Fun With Melanoma

http://www.sciencedaily.com/releases/2008/06/080628155300.htm

I met with Dr. Petersen today. After discussing the tumors in my hip and the resulting pain in my thigh muscles, she decided that we should try radiating the site. She thought there was a good chance that doing so could reduce some of the pain I’ve been having in my thigh, although there is no guarantee. She thought that because it wouldn’t be hitting any sensitive places, like my intestines or stomach, that could cause side effects, that we could go with a single, fairly large dose of radiation. We did the simulation following the consultation as scheduled, and she decided that we should squeeze in the treatment today as well.

So, I went to my blood transfusion and had my 2 units of blood put in me, then returned to Radiation Oncology and had my hip radiated. It only took about 45 minutes and I was done. It was an unexpected surprise that I was able to get it all done in one shot, and in the same day that I was already there. I was thinking I’d have to return another day or two this week, but now I’m off the hook.

Hopefully the radiation will do a better job on my leg than it did on my back.

Both the endoscopy and colonoscopy ended up being fairly painful for me. The sedatives and narcotics they give apparently aren’t strong enough and they didn’t work well. It could be because I’m so used to narcotics now that their effectiveness has diminished.

So, after all the pain of the two scopes, what did we learn? Nothing. It turns out that the problem lies just beyond the reach of both scopes. How do we know the problem is there then? My happy regular 2-month CT scan that I had today!

The scan showed that I have new tumors in my small intestines. These tumors, along with the fact that I’m on the blood thinner Fragmin, is likely making me lose blood through my stools. They are also a likely cause of my continuing nausea.

The CT, along with an X-ray of my hip, also showed tumors in the socket part of my right hip joint, which is the cause of the severe leg pain I’d been having over the last few weeks. I don’t recall if I’ve mentioned that pain on here, but I originally thought it was just a muscle pull or something, until it didn’t heal. Then I mentioned it to Lisa.

I also have some small growths in my lungs and lymph nodes, but Lisa wasn’t too concerned about those.

What does this all mean? Where do we go from here? Well, the continuing tumor growth means that the Temodar isn’t working, even though I only went through one round. And unfortunately, there aren’t a lot of other options for treating me now. The “conventional” methods are exhausted, leaving only clinical trials as options. There are some possibilities there, but before I can qualify, my hemoglobin levels have to be stable. First, I’m done with the Fragmin. It’s contributing to the blood loss, and the risk of a clot at this point is less than the risk of losing blood. I am getting another blood transfusion on Monday to bring my counts back up. Then I’ll meet again with Lisa to see what’s next. She put me on an iron supplement called Vitron C to boost the iron I’m missing from my low blood levels.

Also on Monday, I have an appointment with Dr. Petersen in Radiation Oncology for a consultation and a simulation to radiate my hip. Lisa thought it would only take a couple treatments, and it will hopefully stop the growth there and reduce the pain.

It wasn’t a good news day, but that’s getting more common lately. We just keep on truckin’!

It’s early and still being tested, but it’s encouraging!

http://news.bbc.co.uk/2/hi/health/7460743.stm

I am required to have a driver after my endoscopy, as I get pumped full of hefty drugs that may put me to sleep, or at least will make me really drowsy. Unfortunately, I had some trouble securing a driver for Thursday. So, I had to reschedule the exam for Tuesday. I have a driver lined up, so it should be all set to go!

I had better luck on Wednesday. My blood was ready for me, so I went in, got hooked up, and got the transfusion with very little delay. I was home in 5 hours.

Wednesday night, I drank the magnesium citrate solution and took the Bisacodyl tablets that were supposed to “flush” my digestive system. The idea was that they’d give me diarrhea and, along with the liquid diet restriction, would leave me empty and ready for the lower endoscopy. Unfortunately, my body was stubborn, and I only had a single, very small bowel movement.

I called Lisa today to report the poor results and find out what she wanted to do. She was rather shocked that it didn’t work. Because I was still blocked up, she decided to reschedule the appointment. I am to take Senekot and Colace (laxative and softener) to get things moving, and she will prescribe me “GoLytely”, another laxative they use to prepare for lower endoscopies. My appointment is rescheduled for next Thursday. She also said there is a chance that the stuff I took last night may still have some effect. She said that if I get diarrhea too bad, that I should head to the ER. Boy, what fun I have, eh?

I got to my transfusion appointment at 8am. By 2pm, they still hadn’t started.

There was apparently some problem with antibodies in my blood that made finding compatible blood difficult. Finally, at 2pm, they said they MIGHT have it ready by 3pm. Since they weren’t sure, I told them just to spend the rest of the day figuring it out and I would come back tomorrow. I didn’t want to sit around any longer. They were fine with that.

So, I go back at 9am tomorrow morning to actually have the transfusion. Hopefully, with the rest of the day to work on it, they’ll have it ready!

My hemoglobin today was 7.2, well less than the 7.8 that started it all.

Lisa called Dr. Sherman’s office to set up another blood transfusion for me up here. I will have that done Tuesday (tomorrow) morning at 8am.

She also scheduled an upper and lower endoscopy for me on Thursday at Mayo. She wants to figure out where I am losing all of my blood. They’ll put me under general anesthesia for that, so I have to have a driver to get home.

http://blog.wired.com/wiredscience/2008/06/experimental-dr.html?drugs

I had my blood taken today at the Shakopee Park Nicollet Clinic, who faxed the results to Lisa. Lisa called and reported that my hemoglobin had only improved to 8.1, from 7.8. It wasn’t good enough to continue my chemo. She talked to Dr. Croghan, and they decided to just wait another week and see what happens. They didn’t think it was a GI bleed or anything like that, as I’m pretty young for something like that. They think it’s still just chemo/radiation effects keeping my counts down. She hopes it’ll come up in a week, and if it’s anything over 9.0, she’ll give me the chemo. So, next week I’ll go back to the Shakopee PNC and get another blood draw and do the whole thing again.

Today was my regular monthly checkup and Temodar pill pickup. However, my blood tests showed that my hemoglobin was 7.8, which was really low. Lisa said I was probably low on blood because the radiation treatments were hitting my spine, affecting the production of blood. It is likely that the reason I’ve been feeling run down and tired so much lately is because of the low hemoglobin. I wasn’t able to get my chemo until my blood counts were back up.

Lisa decided it was best to give me a blood transfusion, which consisted simply of getting 2 bags of blood put into me through IV. It took about 4 hours to have the 2 bags of blood infused, and by the time it was done, the nurses said I was already looking “pinker”. I go for another blood test in Shakopee early next week to see if my blood counts have improved, and if they have, Lisa will mail my chemo pills to me.

I reported my continued nausea to Lisa. She gave me more Zofran and some Ativan to help fight it. She said it could take 3 weeks or more for the effects of the radiation to wear off, so she extended my work leave through June 30th.

It’s been 6 days since my last radiation treatment, yet I continue to still get nauseated. I figured that by now, my stomach and intestines would have healed and that the nausea would have decreased. Unfortunately, that hasn’t been the case.

I have my regular monthly appointment with Lisa tomorrow, with the usual blood test and evaluation. Then I get my second round of 5 pills of Temodar. I’ll have to see what Lisa says about the nausea, as well as the back pain that, while is a little better, hasn’t significantly improved.

Here are a couple photos that my sister Cheryl took of me in the radiation machine. The whole unit above and behind me, which is shaped like a large “C”, rotates around me, so that the part that is above me in the photos points at the part of the body where they want to hit. I just lay there on the table, perfectly still, as it moves and zaps away. My feet are strapped together to prevent movement, and I am laying in a head/arm mold that prevents my upper body from moving.

Yesterday, I completed the last of my 10 radiation treatments to my back. I am quite happy that it’s over. While the effects weren’t NEARLY as nasty as when I had radiation to my neck in March of 2007, they were bad enough to help me declare that radiation sucks and I don’t want to ever do it again. This time, the radiation did fatigue me a little, although not to the point where it was a problem.

The main issue was the nausea that it caused. I spent quite a few sessions on the bathroom floor in front of the toilet thanks to the radiation, and that is no fun at all. I still can’t eat a hamburger, thanks to the Culver’s incident. I tried the other day, and when my stomach started to churn after a single bite, I knew it wasn’t time yet to do hamburgers again. Other than that, a lot of foods have been difficult to eat, not because of taste, but just the reaction of my stomach to them. Hopefully in the next week or two my stomach will return to normal and I’ll be able to eat right again. I think I’ve lost weight again because of the difficulty I’ve had eating.

My back seems to hurt a little less, though not a whole lot yet. The Radiation Oncologist said it’s still early and we’ll see what happens in the next couple weeks.

I have another week of disability leave from work to recover from the radiation. I’m hoping that the nausea will clear up in that time. Sometimes it hits at odd intervals, with little or no warning. I need to be sure it’s done with before I go back else I could cause quite a mess at work, and nobody wants that.

I’ve completed 4 of my 10 treatments as of today.

This weekend, I went to the trimesterly convention for the Minnesota Jaycees, which was a nice break from the treatments. It was so nice (and surprising) to have so many people ask how I was doing, say they are reading my blog, and wishing me well and say they are praying for me. It never ceases to amaze me when someone tells me that they read my blog. I started writing it mostly for close friends and family members, yet it seems like everybody I associate with one way or another has made it here at some point. I appreciate all of your support and thank you for reading!

I continue to have nausea occasionally, and it seems to hit at odd times with little or no warning. Sometimes it’s right after a treatment, sometimes it’s when I haven’t had one in a couple days. I got a new prescription today though that hopefully will help. My back pain has not improved yet from the treatments. I’m still loading up on narcotics to keep it down. For the most part, that’s worked well, although Saturday night at the convention I was in quite a bit of pain and the drugs weren’t helping, leading me to crash early.

I got a call from the American Cancer Society’s Hope Lodge in Rochester today. They have a room open for me and I’ll check in tomorrow. The Hope Lodge is a 60 room facility where adult cancer patients from out of town can stay while receiving daily chemo or radiation therapy. I’ll be staying there Tuesday-Thursday nights, then coming home for the weekend, then (I think) staying again Monday night for my last treatment on Tuesday. It’ll save me quite a bit of gas money, although, I’ll have to bring plenty of material to keep me entertained. I’m sure I’ll stock up on DVD movies which I can watch on my laptop, and they have internet access so I can play on there.

Last night, I had Culver’s for dinner. It only stayed with me for about 3 hours. I don’t think I’ll be eating Culver’s again for a while.

The radiation techs told me today to take Compazine every 4-6 hours, even if I don’t feel like I need it. If that doesn’t help, they said they can give me other stronger anti-nausea medication.

I’ve been following their advice so far and taking the Compazine. So far so good, but it hasn’t been very long. Two treatments are down, another tomorrow morning, then I get the weekend off. Woohoo!

I did my first radiation treatment to my back today. It went pretty easy. They did the simulation this morning, getting me positioned, marked up, and creating a pillow that would put me in the same position every time. Then at noon I actually got zapped. The zapping itself was really short, only like 20 seconds, which was much much much less than when they did my neck. Afterwards, my stomach was just a little upset, but I’m not sure if that was from the radiation or from the fairly uncomfortable position I was laying in.

My next treatment is tomorrow at 5:15pm, although they said that they are very good about getting people in early, if I wanted to show up around 3pm or something.

I’m considering staying at the Hope Lodge next week. The Hope Lodge is a free lodging facility for out-of-town cancer patients. I could stay there from Monday to Friday and save a ton on gas going back and forth, although I’d probably be bored out of my mind. They faxed my info over today and I think they’ll tell me more tomorrow.

Today, I met with Dr. Ivy Petersen, a Radiation Oncologist at Mayo. She showed me the CT and MRI scans of my back. Apparently the fractured vertebrae is in my upper back, not the lower, but it’s very possible that the pain is traveling down and manifesting itself in my lower back. Also in my lower back, near where the pain is, is some tumor growth that is worrysome and could lead to problems.

Dr. Petersen decided it would be best to radiate both spots, both to relieve pain and to prevent future problems. I start tomorrow (May 7th) at 8am, and will do 10 consecutive days of treatments, excluding weekends. She suggested I take 3 weeks off work, so I will be off from May 6th to May 27th (but because of my schedule, my first day back would be Sunday June 1st).

Again, it sounds like the main side effects are fatigue and nausea, although both may be minimal. We’ll see!

Also, I completed my 5 days of Temodar this morning. It seemed to go fine and without any issues, but of course, this was the first round. Cumulative rounds may get worse…

I woke up this morning and didn’t want to get out of bed. When laying in the right position, I felt fine. But when I moved, it was apparent that my back was going to be in a bad mood once I got up. I should have taken my drugs and waited a little longer, but I needed to use the restroom, so I got up. And I was right, it hurt.

I took my 60mg of OxyContin, 30mg of Oxycodone, and 1000mg of Tylenol, and about an hour later, I was starting to feel better. Give me another hour from now, and I think the stuff should be kicked in well and I’ll be doing well. I hope so, because I have a meeting I have to attend, and sitting in meetings with back pain is not a fun proposition.

To anyone reading today, have a great Sunday!

I’ve taken Temodar the last two nights, following the instructions given by the doctor, the bottles, and the Temodar brochure. I take a Kytril, wait an hour then take the Temodar, wait an hour, then go to bed. So far, I’ve had no ill effects. I do another tonight, then two more, and I’m done for 23 days.

My MRI on Friday was uneventful. As usual, I dozed off inside the machine. It’s amazing that I can do so considering the considerable amount of noise the MRI machines make. That’s me, though, I can sleep anywhere.

I was scheduled to have my CT this morning then meet with Lisa this afternoon, then have my chemo in the hospital Thursday. The CT changed everything.

Lisa was out today as her baby was sick, so I met with Dr. Croghan instead. Dr. Croghan reported that the spot in my lungs had nearly doubled in size, while tiny spots in my left neck and armpits had increased in size, and one of the spots in my spine had grown too. Obviously, this was not good news. It means that the Taxol and Carboplatin are no longer working to control the cancer.

The CT also showed that there is a fracture of my L1 vertebrae. My back pain has been much worse over the last couple weeks, to the point where the OxyContin and oxycodone weren’t working to control the pain. The fracture explains why I’ve been having so much pain. The fracture was probably caused by the growing tumor.

So, what now?

For the cancer, Dr. Croghan suggested I switch to Temodar (aka Temozolomide). This regimen consists of taking Temodar pills for 5 days, then breaking for 23 days, and repeating. The nice thing about this is that I won’t have to go to the clinic to have it put through IV. I will go once per month for a checkup and to get my new 5 days of pills, then I’m done for a month. The main side effects of Temodar are nausea and fatigue. The nausea is well controlled by taking a Kytril one hour prior to each daily dose of Temodar. The fatigue I’ll just have to deal with. If you remember, previous posts mentioned also doing a drug called RAD001. I guess I can’t do this because I’m on the blood thinner. He also gave me a prescription for a steroid that is milder than Dexamethasone, to help with the nausea.

For my back pain, Dr. Croghan increased my OxyContin to 60mg from 40 and gave me more oxycodone. He told me to start taking 1000mg of Tylenol three times daily, at the same time I take the OxyContin, to help reduce swelling in my back and to enhance the effects of the narcotics. He recommended that we look into radiating the tumor that is causing the problem. He said it would likely be radiated for 5 consecutive days, and the effects would be mild, mostly some nausea and fatigue (what else?). It would be nothing like what happened when my neck was radiated. I first have to have an MRI of my back, which I’ll do on Friday, then I meet with a radiation oncologist, which I’ll do next Tuesday. Hopefully this will relieve a lot of the back pain I’ve been having.

So, it wasn’t a day of good news. On the bright side though, my chemo regimen gets easier and my back pain may get relieved.

In a demonstration that even some of the most hard-to-treat tumors may one day succumb to therapies aimed at molecular “weak points,” researchers at Dana-Farber Cancer Institute report the first instance in which metastatic melanoma has been driven into remission by a targeted therapy. Dana-Farber is a principal teaching affiliate of the Harvard Medical School (HMS).

Read the entire article here: http://www.news.harvard.edu/gazette/2008/04.24/05-melanoma.html

Friday afternoon, my best friend got married. I was so glad that I felt well and was able to attend. After my long weekend of feeling so terrible, I was worried how much of it would carry over and if I’d be able to make it. Luckily, I felt mostly fine, and I was there to be one of her witnesses and her photographer.

After the ceremony at the courthouse, we went to Applebee’s. I started with a tall beer, and had a steak, a baked potato, and fries with buffalo wing dipping sauce. All of it tasted incredible, beer and all. But a few bites into the steak, guess what? Of course, my stomach started feeling strange. I ended up only eating about a fourth of the food. Then, when I got home about 7 hours later, I vomited almost immediately. Luckily I’d pretty much digested the little that I’d eaten and didn’t lose much.

This is the second time in a row, though, where I got sick about a week after my chemo. It’s not limiting itself to just the days after treatment anymore. In fact, while I’ve felt MUCH better since Monday evening, my stomach has never been quite right since my last chemo treatment.

Recently, Encyclopedia Britannica started offering free one-year subscription to “web publishers”. To get it, you have to fill out a form that includes your website address and a description of your site.

I applied, and was approved for a free subscription! I can now access the web version (retail $70) of the $1400 encyclopedia set. I guess this means that they think I’m a web publisher with good site content!

Yes, it’s been over a month since my last post. Yes, I know that’s bad and I need to do a better job of updating. Yes, I’ve been getting a lot of crap from a number of people for not keeping my blog up to date. I hope everyone can forgive me!

Since my last post, I’ve had two treatments. Logistically, they were the same. I showed up at 8am at Methodist Hospital, checked into my room, and spent the whole day there getting my treatment. There really isn’t anything new as far as what I am doing. So, the main thing I have to share has to do with symptoms.

First, my back. I’m now on 40mg of OxyContin every 8 hours, along with 15mg Oxycodone as needed for breakthrough pain. After months of tinkering with my pain killer levels, I think we may have found a good mix. My back has felt better in the last few weeks than it has in months, and while I still need the Oxycodone for breakthrough pain, I haven’t needed it as often.

Following my treatment on April 3rd, I had a little more nausea than normal. It was enough that I could tell it was worse, but it was tolerable. But then April 17th happened.

I had my treatment on Thursday the 17th, then woke up Friday with my usual post-chemo nausea. I felt nauseated most of the day but no more so than in previous treatments. Saturday, I got up in the morning and vomited. It’s not the first time I’d vomited from chemo, but usually I feel better afterwards. So I went to karate expecting to have no problems. That was a big mistake! I barely made it through half the class before I lost it again. I could tell at that point that something was different and I was in for it.

Basically, I spent Friday morning through Monday night nauseated, and became very familiar with the inside of the toilet bowls in my house. I tried eating here and there, but didn’t have a whole lot of luck keeping stuff down. I effectively didn’t eat much from Thursday night to Monday night. I called in sick to work both Sunday and Monday nights, as there was no way I’d have been able to function.

Yes, it was by far the worst the chemotherapy has ever affected me. The Kytril and Dexamethasone that Lisa had prescribed to me didn’t seem to help much, although a couple times that I took the Dex, I vomited within minutes afterwards, so it may not have stayed in my system long enough to help.

I go to Mayo next Wednesday for my 2-month CT, and have treatment on Thursday. For the first time, I’m actually dreading getting treated. I really don’t want to go through what I went through this week again, and I know that it could very well be worse.

I checked in at Mayo at my 8:30am time. Had my blood drawn, checked back in for chemo, and was called back. I was ready to ask for a room with a bed instead of a chair as I didn’t think sitting in a semi-comfortable chair for 8 hours with my back the way it is was a good idea. Luckily, they took me to a room with a bed anyway.

Once there, they kept changing their minds as to what they were going to do with me. First, they wanted to take me over to Methodist and have the chemo all done there, Taxol and all. Then they decided to do the Taxol in there on Gonda 10 and then move me to Methodist for the Carboplatin. That’s what they ended up doing.

As I was getting the Taxol, Lisa came in and talked to me. She said that there was a policy change just that week where all patients who have been desensitized have to be treated in the Medical Oncology unit at Methodist. So, my Carbo this time would be given at Methodist, and in the future both Taxol and Carbo would. She gave me the prescription for Fragmin 18,000u in one .72ml shot. She also bumped my OxyContin up to 30mg, although she had to do it in two pills of 20mg and 10mg, as they don’t make 30mg ones.

After the Taxol, they moved me over to Methodist, where I got my own room, just like I was in two weeks ago. Unfortunately, they didn’t know that I’d be coming (not sure why), so they had to arrange a nurse for me. That unit has a 1:1 nurse:patient ratio, so they had to have someone dedicated to me. They did get someone, so I was good there. The problem then was that they didn’t get the Carbo prescriptions mixed, so I had to wait almost 2 hours for that. I didn’t get the Carbo started until after 11am.

The somewhat good news is that because I’m doing this at Methodist, I get to order lunch and dinner off the hospital menu. It’s good because, well, free food! It’s bad because, if you remember, the food isn’t all that impressive. I went for the breakfast (french toast, etc.) for lunch, and chicken strips and a burger for dinner. I know I gave the burger a bad review last time, but I tried it with bacon on it thinking it might be better. I was wrong. Luckily, by that time I wasn’t terribly hungry anyway, so the sides filled me up.

The Carbo was supposed to go 7-8 hours, yet for some reason I didn’t get out of there until about 1am, which was much longer than that. Hopefully it’ll go quicker next time. Lisa said next time I should be down to 4-6 hours. Then I got to drive home at 1:30 in the midst of a snowstorm. It was coming down hard, making visibility limited, but the ground was warm and everything melted right away and it was never slippery. I got home at 3:00am, after leaving at 6:30am. It was quite the 20.5 hour day!

http://news.bbc.co.uk/1/hi/health/7292652.stm

I talked to Lisa twice this week - once on Tuesday and again on Wednesday.

She and Dr. Davila determined that there was no reason I needed to do the Fragmin in two shots. I need 18,000u, for which the resident at Methodist prescribed me one shot of 10,000u and one of 7,500u. Lisa is going to write me a new prescription for a single 18,000u shot that I can fill once my current 2-shot supply (30 days worth) is expended. That will be so much better, as the shots are a bit painful and leave big purple spots, and they’re expensive ($100 copay for each box of shots, so it’ll decrease from $200/month to $100/month).

My next chemo, scheduled for next Thursday the 20th, would normally be at Park Nicollet. However, because of the desensitization, Lisa wants me to do it at Mayo. I’ll do that one there, then two weeks later at Mayo again, and then we’ll see from there.

Next week, my treatment will be trimmed from 6 bags of Carboplatin to 4 bags, but will still take about 7 hours. The next time I will be down to 3 bags at 4 hours, where it’ll probably then stay for the duration of my treatments.

The OxyContin has been working pretty well for my back. My typical pain has gone from a 6 (on a 1-10, 10 worst scale) to about a 2, with the Percocet once again working for breakthrough pain. Now I understand what the pain doctors meant by the OxyContin giving a “base” for the Percocet to work on. It means that I have a base amount of oxycodone in my system, so when I take the Percocet, I’m adding more to it, thus giving me an overall amount greater than with Percocet alone. Whatever, it works. It’s actually been a little worse today. Not quite the 6, but about a 4, which is the worst it’s been since the OxyContin kicked in.

I was uncertain how much physical activity I could do with a pulmonary embolism, so I asked Lisa. She said I could continue to do non-contact karate (no sparring), but suggested I stay away from other workouts for now (cardio, weight training, etc.).

This was my 3rd year in a row with a hospital stay. In September 2006, it was my first neck surgery. In January 2007, my 2nd. Now in March 2008, a PE and a desensitization.

As with the other times, I slept horribly, probably a total of maybe two hours on Thursday night. It didn’t help that they came in to draw my blood at 3am and to give me Oxycontin at 6am.

Friday morning, a group of 5 doctors stopped by to talk to me about the pending Carboplatin desensitization, which then proceeded around 11am. They gave me a total of 6 IV bags, each with a higher and higher concentration of Carboplatin, until at the end of the 6th bag I had received a total dose equal to what I used to get in 30 minutes before my reaction. I didn’t have any problems, no reaction, so so far so good!

The pain specialists stopped by again and said they were going to put me on Oxycontin. They said that it can take a few days to really take effect, so even though I’ve still been having pain, they want me to stay on it and see what happens.

I asked Lisa about the slight progression of the cancer while I was on Taxol only. I asked if the fact that it progressed so quickly when some of the chemo was removed suggests that I will have to be on chemo the rest of my life, and she reluctantly nodded yes. She said that there will probably come a point when the Taxol and Carbo stop working, and then we’d have to switch to some other drugs, but that I would probably be stuck on something permanently.

One of the doctors said that I probably wouldn’t have to stay Friday night if everything went well. I asked Lisa what she thought when she stopped by and she agreed. Thus, I actually left Friday around 11:30pm and stayed at a hotel in Rochester. They wanted me to be close, but it was more comfortable than a hospital bed. If I had any problems breathing or any reactions at all, I was to call 911 immediately and get an ambulance to pick me up. They didn’t think that’d happen though, otherwise they wouldn’t have let me leave.

They sent me home with a prescription of Fragmin blood thinner shots (which was NOT a cheap med). I did my first injection at 2pm today and have to do one every day until they’re gone. They gave me this instead of the more well known Warfarin (aka Coumadin), as I wouldn’t qualify for some of the clinical trials that I could do if the Carbo desensitization doesn’t work if I were on Coumadin.

Thus ends my entertaining end of the week!

(Oh, and on a side note, if you ever have to stay at Methodist Hospital in Rochester, watch out for the food! It’s the worst hospital food I’ve had. I tried the burger and fries, chicken noodle soup, a brownie, a pepperoni pizza, potatoes, corn…all were terrible. The breakfast food (french toast, eggs, bacon) was actually very good. I had that for breakfast on Friday and again for dinner.)

My normal 2 month CT this morning showed that I have a pulmonary embolism (that’s a blood clot in my lungs, for you laypeople). The radiologist sent me directly up to oncology without passing go or collecting $200.

Lisa told me that I would need to be hospitalized and given a heparin shot to thin my blood and get rid of the clot. I also can’t ever do Avastin again, as that probably contributed to the clot. So, here I sit at Methodist Hospital in Rochester.

Once I’m out, I will have to give myself shots in the belly of another blood thinner. It’ll be similar to the Leukine that I used to do, so it shouldn’t be a big deal.

Since I’m in the hospital anyway, Lisa decided to desensitize me to Carboplatin. They’ll start that tomorrow morning and keep me here a second night.

As far as the melanoma goes, the radiologist said he saw small spots in my lungs, a lymph node in my belly, and the existing one in L1 was slightly bigger. Lisa and two oncologists looked at the films and couldn’t see what the radiologist saw, so they’re not positive it’s actually there. But since I was on Taxol only for a month, she says it’s not surprising that it spread a little. She said though that it’s not a huge problem. The return of the Carbo hopefully will take care of that.

If for some reason the desensitization to Carbo doesn’t work, she may put my on a clinical trial of Temozolomide and RK001 (I think), which are both pill drugs that I could take at home.

Since I was at Methodist anyway, Lisa had a pain specialist visit me. He asked about my pain and what medications I’d been on. He recommended OxyContin, an extended release type of Oxycodone, the main ingredient in Percocet. I got one, and it seemed to work pretty well.

That’s all I can think of at the moment. Oh, Lisa apparently found my blog. Luckily I didn’t get in trouble.

After my call to Dr. Sherman on Thursday, I began taking 2 of the morphine sulfates instead of 1.

That night (or rather the next morning) at around 4am, I was watching TV and got up to let the dogs out. After they came in, as I was hanging up my jacket, my back started spasming, nearly taking me to the ground. It wasn’t as bad as what sent me to the ER on December 22nd, but it was close. Once again, the Percocet didn’t do much, but I took some ibuprofen, too, which helped.

I called Dr. Sherman again Friday afternoon. The triage nurse sounded annoyed that I was calling again, but I didn’t want to take the chance of that happening again and not being able to do anything about it until Monday. He talked to Dr. Sherman and called me back. She wants me to continue taking 2 morphine sulfate, and also gave me a prescription for 2mg Dilaudid (aka hydromorphone). I am to take the Dilaudid and stop taking the Percocet. She also said that if I do need to go to the ER that I should go back to St. Francis, as that’s where I went last time and they have my previous scans. Of course, that’s where I’d go anyway, as it’s only a mile from me.

I took the Dilaudid once on Friday night, and it seemed to work. I’m not sure if it knocked me out or I was just really tired, but I fell asleep in my chair for a couple hours.

Strangely, Saturday my back has felt pretty good and I have not had to take any drugs whatsoever. I was quite surprised!

I gave in and called Dr. Sherman’s office and spoke to a triage nurse, who discussed it with Dr. Sherman and called me back. Dr. Sherman said I should try taking 2 of the 15mg morphine sulfate extended release tablets at my next scheduled dose and see how that does. Hopefully the 30mg dose will work better!

Huey Lewis sang…

I want a new drug
One that does what it should
One that wont make me feel too bad
One that wont make me feel too good

The 15mg morphine sulfate extended release that Dr. Sherman prescribed to me has not worked at all. I can’t tell any difference in the level of back pain, which means I continue to have to use the percocet.

Unfortunately, the percocet seems to be less and less effective as time goes on. Several times lately I’ve taken it and it’s barely dented the pain. Other times it dents it but doesn’t fully take it away. Sometimes it works pretty well, but this is becoming less common.

So right now, I have two powerful pain medications that aren’t doing what they should. I have to decide whether to wait a week and talk to Lisa when I go to the Mayo Clinic on March 6th, or if I should call Dr. Sherman now and see if she can give me something else that might work better.

I really really hate having to be dependent on pain medication. It makes me feel like a drug seeker. But the alternative is constant back pain from the chemo or from the tumors, so I guess I’ll deal with that stigma. I’ll ask Lisa about her suggestion of local radiation to relieve the pain when I go to Mayo next week.

Protein shines light on cancer response
A technique that specifically “tags” tumors responding to chemotherapy may offer a new strategy for determining a cancer treatment’s effectiveness within days of starting treatment, according to a new study by Vanderbilt-Ingram Cancer Center investigators.

http://www.physorg.com/news123083289.html

I had my first treatment with Avastin today. I did the usual pre-meds (to which they added Tylenol, which the nurse said was for the Taxol even though I’d never had that before), then the hour of Taxol, followed by an hour and a half of Avastin. It was uneventful, and boring! I’m used to 30 minutes of Carboplatin (and lately not even that), so the addition of the hour and a half made the appointment seem really long. The bright side is that next time they drop the Avastin to an hour, then the next one to a half hour.

The most important thing I have to watch for with Avastin is numbness. Avastin can occasionally cause blood clots which cause the numbness. If that happens, I have to go to the Emergency Room immediately. The other symptom is nosebleeds, which are a common side effect.

Dr. Sherman refilled my Ambien and Percocet, and also gave me extended release morphine. I can take that twice a day, and use the Percocet for breakthrough pain.

That’s about it! It was mostly uneventful.

Park Nicollet Clinic
The building where Dr. Connelly and Dr. Sherman are is the one northeast of the oval driveway.

Methodist Hospital
This is where I had my neck surgeries.

Mayo Clinic
This one is harder to describe. The building in the middle with the reddish roof is the Gonda Building. On the 10th floor of this building is Oncology, where I am examined and chemo’d. The building north of that (where the words “Mayo Clinic” are) is Rochester Methodist Hospital (as opposed to St. Louis Park Methodist Hospital where I had my surgery). On the west end of the hospital is the Charlton Building, where my radiation therapy and most of my CT scans havebeen. The plus-shaped building to the south of Gonda is the original Mayo Building. South of the Mayo Building (across the street) is the Hilton Building, where the majority of my blood draws take place.

I got a voicemail from Lisa today (while I was sleeping during the day). She said my insurance company told her that no approval was necessary for Avastin if it was administered in a doctor’s office. Yet, someone else she’d talked to last week said it did need to be approved. She was confused and not sure which was correct.

I’m thinking that what she heard today may be the correct information. On Friday, I talked to someone at BCBS who gave me the number for Medical Review that a provider can call to discuss approvals. They sound like they are the ones who make the decisions, so if that is who Lisa heard it from, it’s probably correct.

So, Lisa is faxing treatment orders to Dr. Sherman, who I see this Thursday. It sounds like this will be my first Taxol/Avastin combination treatment.

I found these articles interesting:

Hope May Be Useless Against Cancer - Discover.com

The Cancer That Itches - Discover.com

My brain MRI on Friday morning at the Mayo Clinic went fine. As usual, I had no problem in the cramped confines of the MRI machine. In fact, I rather enjoy it, as I have with all of the scans I’ve had. The only time I don’t like being scanned is when I have to drink the nasty smoothie for a CT. I dozed off a little during my MRI, but not as much as I did for the ER MRI I had in December. Then again, my brain MRI only took like 40 minutes, as compared to nearly 90 for the ER one. They also used contrast for this MRI and didn’t for the ER one. They were able to leave the MRI IV in my arm and use it for the chemo infusion. This must be fairly uncommon as the chemo nurses were a little surprised by it.

Lisa is back from her maternity leave, so things are getting back to normal! She reported that my brain MRI was clean, so my switch to Avastin wouldn’t be a problem. She was a little surprised that Dr. Croghan hadn’t ordered a urine test for me to check for “protein leak”, which is another prerequisite to Avastin. The process at the Mayo Clinic is rather unique. They give you a cup, tell you to use any bathroom. Once done, you put the cup into a sealable bag and take it to the subway level. In the subway are kiosks marked “Station S” where you can deposit your bag. Someone then collects them and delivers them to the lab. I used the restroom on the 10th floor where Oncology is and then had to carry it down to the subway to drop it off. Strange.

Despite my clean MRI and urine test, Lisa still decided to wait on the Avastin. She raised a concern about the cost and insurance coverage of Avastin. Apparently, a single dose of Avastin costs $6000-$8000, and insurance doesn’t always cover it. Thus, she said she wants me to check with my insurance to see if they’ll cover it before she actually starts me on it. For my chemo today, then, we stayed with just Taxol. While I was being treated with the Taxol, I called my insurance company, who told me that Avastin is an “off label” drug and that my provider (Mayo) would need to call and get a pre-approval (aka prior authorization) for it, and then it’d take 7-10 days for a decision. I passed that info on to Lisa, who said she’d call first thing Monday morning.

If it is denied, then I will likely need to spend a night in the hospital in Rochester to desensitize me to Carboplatin, after which I can resume my old regimen of Taxol/Carboplatin. Dr. Croghan had told me that it takes 2-3 days in the hospital, but Lisa said that she and Dr. Markovic had done it successfully with just an overnight stay. As successful as the Taxol/Carbo combination has been so far, I’m tempted to prefer to skip the Avastin and go straight to the desensitization, but I trust them to know what’s best.

So, if the Avastin gets approved in time, Lisa will write orders for Park Nicollet to give it to me in two weeks. If it’s not in time, I’ll do just Taxol again at PNC. If it’s denied, I’ll go to the hospital in Rochester, but I’m not sure when that’ll be.

As for my back pain, Lisa seems to think it may actually be a symptom of the tumors in my back rather than a symptom of the chemo drugs. She wants to wait a little longer and see how things go, but may possibly consider some localized radiation therapy to help it. This was a possibility she had mentioned when the tumors in my spine were first discovered. She also mentioned that if I continue to regularly use the percocet 2-3 times a day, she may recommend a longer lasting pain medication instead of the short term percocet.

Stay tuned for more information. Same Bat-Time, Same Bat-Channel!

I woke up Saturday prior to going to work with worse back pain than I’d had in a while. Percocet was only helping it a little, which happens occasionally. I ended up having to call into work though because I didn’t want to move.

At my last visit with Dr. Sherman, I asked if one can develop a tolerance to percocet. She said that it’s not common, but can happen. If I find that percocet regularly doesn’t work well, Dr. Sherman said to call her and she will give me something stronger. I’m not quite there yet, but it’s a possibility if it keeps up.

Tonight, the temperature dropped to 18 below zero. So naturally, on a day I could least afford for it to happen, my van decided it didn’t want to start. I tried for 45 minutes and never could get it going. In the 7 years I’ve had it, that was the first time that has ever happened. Luckily, I was able to get a ride to my appointment and made it just in time.

My visit with Dr. Sherman was routine. I told her that I had been taking ibuprofen for the back pain, and supplementing with percocet when the ibuprofen didn’t work. She was concerned about the amount of ibuprofen I was taking. Ibuprofen is a blood thinner, and because the chemo can cause a drop in platelet counts, it is suggested that those on chemo avoid ibuprofen. Lisa had told me this when I first started the chemo. I tried to comply, but neither acetaminophen nor naproxen helped the pain. Dr. Sherman said that she wants me to flip them around - take percocet first, and ibuprofen only if necessary.

The actual treatment was interesting. I have very, very good veins and nurses usually have no trouble at all starting an IV. Today, however, was a little different. The first nurse tried twice and wasn’t able to get the IV started. They have a two strike rule, so she had to get another nurse. This nurse appeared to get the IV started, then left, and the first came back to start the fluids. Shortly after the fluids started, I felt a fairly strong pain at the insertion point. I mentioned it to the nurse, who checked the IV and found that it had actually missed the vein. The pain was caused by the fluids going into my muscle instead of my bloodstream. She took it out, had yet another nurse restart the IV, and then all was good. The rest of the Taxol-only treatment went smoothly.

Mayo in 2 weeks, I get an MRI and see Lisa.

After just 2.5 hours of sleep on Wednesday night, I ventured out at 5:30am on my latest journey to the Mayo Clinic, an hour and a half south in Rochester, MN. I was hoping I would get some answers this time. Could they help the back pain? What will they do about the carboplatin reaction? Will they put me on a different regimen? Will Hillary or Barack be elected so we can have a sane person in the White House? How many licks DOES it take to get to the center of a Tootsie Roll Tootsie Pop? It would be an interesting day!

I arrived a little earlier than my scheduled blood test at 7:50, but with nothing better to do, I checked in and waited. They were able to get me in early, and after two pokes (the first having provided no blood), I was off to Radiology.

I checked in at Radiology and was immediately relieved when the receptionist told me “you’ve got the water doc!” Yes, I was fortunate to have the new bottled water with contrast medium in it instead of the vomit-inducing smoothie. I was prepared to fight for the water with several legitimate excuses as to why I couldn’t do the smoothie when another option was available, but I was spared the need. The CT itself was mostly routine, except that they included a neck scan this time instead of just a torso scan.

After the scan, I had a 7 hour wait until I saw Dr. Croghan at 4:30. I ran to Taco Bell, ate, fell asleep in the van for an hour, then drove back to Mayo and went up to the Oncology floor, found a comfy leather chair, and read my book (and dozed off a couple times). The time passed surprisingly quickly.

Finally, my appointment time. Dr. Croghan had conferred with Dr. Markovic, and they came up with these options in response to my Carboplatin reaction:

* Stay with just Taxol.
* Stay with just Taxol, but go back to 3 weeks on, 1 week off like I had originally.
* Put me in the hospital for 2-3 days and “desensitize” me to Carboplatin, a procedure with some risk.
* Add a drug called Avastin to the Taxol and stay every other week.
* Give me a drug called Temodar, a 5-day-on, 23-day-off pill that has shown results at killing cancer cells.

Dr. Croghan decided that we would stay with just the Taxol for this round. He thinks the best option would be adding the Avastin. Avastin is a drug that prevents the formation of new blood vessels, which melanoma in particular relys upon to survive and grow. Avastin would be given intraveniously, for 1 hour following the Taxol. Before they can give Avastin, however, they have to get an MRI scan of my brain to prove that there are no problems.

So, at my next Mayo appointment in 4 weeks, I will have an MRI, see Lisa (who should be back), and then have whatever chemo they decide to give me.

Today I go to Park Nicollet for my Taxol-only treatment.

Like Christmas, I have the joy of working New Year’s Eve and New Year’s Day. As an added bonus, there’s all kinds of EOY (end of year) stuff at the bank, which means all sorts of fun possibilities!

I had my regular chemo appointment at Park Nicollet last Thursday. I saw Mary, Dr. Sherman’s Nurse Practitioner, as Dr. Sherman was out of the office. I related my reaction experience at the Mayo Clinic from two weeks prior. She agreed with Dr. Croghan that once you react to a chemo drug, chances are very high that you’ll react again. I told her that Dr. Croghan said to do the Taxol and skip the Carboplatin, so that’s what we did.

My usual day-after-chemo-stomach-and-taste-effects still occurred on Friday, but they were not as bad as normal. This is probably because I didn’t get the Carboplatin, just the Taxol.

Mary wasn’t sure what would come next for me with the chemo, whether they would leave me on Taxol alone, add something else to it, or try something different altogether. I will find that out in a couple weeks (January 10th) when I return to Mayo.

Once again, Mayo has my appointments screwed up. I have to go on Thursday the 10th to see Dr. Croghan again, which is nice because I’ve seen him before and he was the one there when I had the reaction. I also have my bi-monthly CT scan that morning. I don’t expect any changes in the scan, but we’ll see! Then, I have to go back on Friday the 11th for chemo treatment. I’m considering calling Park Nicollet and seeing if they can get me in for the treatment there instead. I’d then go to Mayo on Thursday for the doc and tests, and stay here for the treatment on Friday. That would be much easier, I think. After all, the drugs are the same, and it doesn’t really matter WHO poisons me.

Friday, the day after I had chemo, my back pain lightened up a bit and has been better. It still hurts, but now it’s more of a dull ache/throb than the shooting pains I had been having before. That has allowed me to slow down on the percocet and rely more on ibuprofen. Monday morning, I noticed a slight tingle in my left foot. It has since gone away, so I’m not sure if it’s more peripheral neuropathy coming on or of I just pinched a nerve a bit.

Have a safe and happy new year!

I hope everyone has a great Christmas! Mine was boring. I had to work both Christmas Eve and Christmas night, so I was sleeping during the day both days.

My back has not repeated what happened on Saturday night, although it continues to give me moderate pain. Monday afternoon, it woke me up around 2:30pm with stabbing pains - probably the worst I’ve had, after Saturday’s. I took some ibuprofen, which didn’t help, so I had to take percocet. That did help, but of course, that made me not able to fall asleep again, so I only got about 4 hours of sleep Monday. I was quite tired at work Monday night, but I made it through.

Tonight, I sit at work, and again ibuprofen did not help. I took percocet, and I feared that it was not going to relieve the pain, but it finally did after about 90 minutes. It’s really strange how sometimes it’ll kick in after 30 minutes, and sometimes it takes an hour and a half.

This lower back pain is definitely the worst of the chemo effects I’ve had. It’s been pretty consistent over the last couple weeks, and luckily I have drugs that can control the pain. I absolutely hate having to take prescription pain medication and always have, but I guess it’s better than the alternative. It bothers me, though, to ask for more when I get low. I know it’s normal for cancer patients to have pain and need medication to control it, and I know that my doctors understand, but I still can’t resist the feeling that I’m a drug seeker when I ask for pain medication.

I used the last of my Ambien today and need to get a refill. The stuff works pretty well at helping me sleep. I’d never had a problem sleeping before, but lately falling asleep and/or staying asleep is sometimes a challenge, so the Ambien is nice to have around.

I go to Park Nicollet on Thursday for chemotherapy. I see Mary, Dr. Sherman’s nurse practitioner, then have the treatment. Two weeks from then, I go to Mayo for treatment and my bi-monthly CT scan. I haven’t received an appointment card from them yet, so I’m going to call tomorrow to see if they’ve made the appointment for me yet. I don’t want to happen what happened last time. I’m also going to strongly request that I get the water contrast instead of the smoothie contrast for the CT. After all, I’m the one paying $3000 for the scan (well, my insurance is, but I’m still the customer), so I should get what I want.

It was an interesting weekend! After having LASIK eye surgery on Friday, I got to pay a visit to the emergency room on Saturday!

Saturday evening, I woke up at 5:30pm after taking a nap prior to going to work that night. I stood up, and almost immediately fell backwards on the bed in pain. My middle-lower back was experiencing severe stabbing pains, worse than I’d had yet. I got up and tried a few more times, each time ending up back on the bed. It was bad enough that I knew I was going to need to go to the Emergency Room to see what was going on. I knew that I had tumors in my vertebrae, and it was a possibility that it wasn’t just a chemo reaction but a tumor pushing on my spinal cord. Either way, I had to be sure, and I knew I needed stronger pain medication.

I took percocet to alleviate as much pain as I could and remained in bed for an hour while it kicked in. Once it did, although still sore, I was able to get up and move around. I called in to work, then headed to the ER at St. Francis Hospital in Shakopee.

The ER doctor gave me a shot of dilotid which, on top of the percocet still in my system, relieved most of the pain. He sent me for a MRI of my lower back. I spent nearly 90 minutes on my back in the MRI machine, which made it start hurting again despite the amount of painkillers in my system. Once I got back to the ER room, the doctor told me that the tumors in L1 and L2 were not affecting my spinal cord and that he suspected that the pain is just chemo related. He gave me a another shot of dilotid and a prescription for more percocet and sent me home with instructions to follow up with Mayo on Monday.

Today, my back is still in pain, but it’s not nearly as bad as Saturday, and ibuprofen has helped and have percocet if necessary. As long as it remains tolerable, I will probably not call Mayo tomorrow, and will just talk to Mary (Dr. Sherman’s nurse practitioner at Park Nicollet) at my regular appointment on Thursday.

Other than Friday’s episode, things have been going fairly well. Saturday was a bit unpleasant due to the normal upset stomach that’s followed recent chemo treatments. My left hand continues to be slightly numb from the neuropathy. My biggest complaint at the moment is the lower back pain that I wrote about a week or so ago. After having the pain for about 5 days, it went way, but the last few it has returned. Sometimes 3 ibuprofen does the trick, sometimes I have to go for the percocet.

Strange thing about percocet…it’s supposed to make you drowsy, but it actually does the opposite to me. It doesn’t make me drowsy at all, but rather makes my mind hyper-active, which in turn keeps me awake. I can’t take percocet before bed or I’ll never fall asleep. It’s really odd!

On a side and totally unrelated note, I’ve restarted my other “non-melanoma” blog. The blog has been there for a few years, but I have rarely done anything with it. I’m trying to change that. Feel free to check it out at http://www2.flamespurt.net.

On Wednesday morning, I called Mayo and told them I couldn’t make it so that they would have to rearrange my schedule. They were able to get me in for both the doctor and the chemo on Friday, so that’s what I did.

Friday afternoon, the chemo was proceeding normally. The hour of Taxol went smoothly. However, about 15 minutes into the 30 minute Carboplatin infusion, things went bad.

I suddenly started getting very warm. At first, I just figured that they turned up the heat a little. Then, my lips got numb. My stomach started cramping, and my lower back started to hurt. The backs of my hands turned bright red and were itching. Worst of all, my throat started constricting, making it difficult to breath, and I could barely talk above a whisper. All this happened in about 3 minutes.

I quickly called the nurse that was standing right there at the desk, and she came over. I explained, and she immediately shut down the Carboplatin. She rushed away, returning with a 50mg injection of Benadryl (twice what they gave me at the start of the treatment) and a 10mg injection of Dexamethasone, a steroid used to prevent and treat allergic reactions. She closed the curtains between patient chairs, then went and paged the doctor I saw that day, Dr. Croghan.

Dr. Croghan didn’t immediately respond, so another oncology doctor (whose name I don’t recall) came and saw me. There were 3 nurses and the doctor there. I was somewhat out of it by then, and I don’t even remember what this doctor said.

Shortly after he left, Dr. Croghan arrived. He listened to my lungs to make sure that I was breathing well enough. I don’t remember everything he said either, but I do remember that he said we may have to not do the Carboplatin at my next treatment. He said the reaction could be even worse if we did it again. He said there was something they could do in the hospital that would make my body better at tolerating the Carboplatin, but it would require a 2-3 day inpatient stay. And unfortunately, that’s about all I remember. I felt so crappy that my attention span and memory were temporarily shot.

About 15 minutes after the Benadryl and Dexamethasone shots, I started to feel better. They kept me there another hour or so to monitor me, and then let me leave. Dr. Croghan told me that I need to find a ride home because I shouldn’t drive with the all that Benadryl in my system. I called for a ride, but I would have had to wait like 2 hours for anyone to get there and didn’t feel like sitting around that long, so I just drove home. Benadryl usually doesn’t make me all that sleepy anyway.

I’m probably going to call down there on Monday to ask questions that I didn’t while I was there. Dr. Croghan told me to tell Park Nicollet not to give me the Carboplatin, but I want to know what happens beyond that.

I tried to think of anything different that I did in the few days before that might have caused this sudden reaction, 8 months after I started. Mayo said it can happen, but I still wondered. The only thing I could think of was that I did not sleep AT ALL on Thursday night, and I thought that maybe a lack of sleep may have contributed. I’m doubtful, but I’ll ask.

I heard back from the Mayo Clinic yesterday (Monday) afternoon. Because of the short notice, they couldn’t get the doctor visit and the chemo on the same day. I have to go down there Wednesday for the blood tests and the doctor visit, and then back on Thursday for the chemo. It’s 90 minutes each way, so there are 3 hours of extra driving that I didn’t need. They did apologize and admit that it was their fault. The service at Mayo has been exceptional, so I suppose they’re entitled to one hiccup.

It amazes me sometimes the number of side effects that Taxol and Carboplatin cause. The last several days, I’ve been experiencing lower back pain. I figured that I just pulled a muscle or something when I was on the treadmill on Friday. This morning at work, the pain got worse than it had been, and I got fairly cold sitting at my desk, which is unusual for me. I investigated, starting with Mayo’s page on Taxol, and there it was: “Lower back or side pain accompanied by fever or chills”. It was listed as a “more common” side effect of Taxol, and a “less common” side effect of Carboplatin. I’m not sure about the fever yet as I don’t have a thermometer here at work, but the lower back pain and chills apply. I took both ibuprofen and acetaminophen, which only moderately helped. I have percocet at home calling my name.

So, the side effects list is now:

* Fatigue (Frequent)
* Peripheral Neuropathy (Constant)
* Hair Loss (Minor, especially after the dose and schedule reductions)
* Nausea (~2 Days After Treatment)
* Change in Taste (~2 Days After Treatment)
* Lower Back Pain & Chills (Not Sure Yet!)

I miss Lisa. If you don’t remember, Lisa Kottschade is the RN/MSN/CNP who I see at the Mayo Clinic. She’s on maternity leave and won’t return until February.

I’m seeing Dr. Ravi Rao for the next couple months, until she returns in February. He’s ok, but isn’t nearly as friendly as Lisa is.

Today, I realized that I haven’t received my appointment card for my treatment at Mayo next Thursday. Usually I’ve received the card, which has my appointment details, earlier than this. I called the Oncology appointment line and asked if an appointment had been made for me. One hadn’t. The scheduler found in the notes that Dr. Rao said that I would call and make an appointment. Unfortunately, he didn’t tell me I needed to do that.

I guess I just got spoiled by Lisa taking care of everything for me. I can’t wait until she gets back.