I went today for CT scans to measure the progress of things in my battle with kidney cancer. The last set of scans (from January) had shown tumor growth for the first time since starting the targeted chemotherapy in 2008, so we changed to a newer drug, Votrient, and after three months of almost continuous use (600 mg/day), I have learned that the tumors are again shrinking. I meet with my oncologist tomorrow to discuss this all, and will post a further update with more details then, but for now, I am quite happy and off to play some poker to extend my lucky streak.
Votrient is Working
April 28th, 2010Still Struggling with Kidney Cancer
March 22nd, 2010I’m not taking this evening my daily dose of Votrient, the targeted chemotherapy drug that I have been taking for the last two months, in my battle with renal cell carcinoma, which I prefer to just call kidney cancer. The side effects, for me at least as this is always different from person to person, have been much easier than those with Sutent, the previous drug I was taking, but a new issue has popped up. A rash on my legs that has turned into pretty much open sores, has me visiting the Doctor tomorrow to figure out if this is a new side effect or something unrelated, and we are halting the chemo as a precaution.
I have not updated the blog in a while, so here is the latest on my cancer and the side effects of the targeted chemotherapy, Votrient. I do not have CT scans scheduled until late April, so we really don’t know where we are with tumor growth.
Fatigue: While I am not a bundle of energy, I have much more get-up-and-go than I did with Sutent, but still a mere shadow of my former self pre cancer. I spend most of my time sedentary, working/playing at a TV, iPhone or computer, and am excited to get my iPad in a week or so. The weather is getting warmer and I am looking forward to at least getting outside for an occasional walk and a ride in the convertible. I continue to get short of breath if I over exert though, and back to back trips up and down stairs forces a sit down.
Pain: I am in pretty constant pain if not taking drugs to control it, but when I take the prescribed dosage I am practically pain free. The pain is in my chest, and goes all 360 degrees around, feels similar to what I used to describe as low back pain, and it can get pretty bad. The consensus medical opinion seems to be that the pain is coming from three possible sources: as a drug side effect, as a cancer tumor growing, or as just plain old age, pinched nerve, pulled muscle kind of thing. I believe it is mostly cancer tumor related, but there is some pain from all of the issues. Some days when I know I have nothing better to do, I do not take any pain medication just to see just how bad it gets before I give up and take a pill. Time release morphine and Vicodan control this just fine for me, but the usage of these drugs brings major problems in to life, and I know that as my disease progresses I can look forward to even more pain control medications. I do not want to sleep my life away and sit all day slobbering on my remote control.
Appetite: The Votrient has really done a number on my appetite. Believe it or not I have to sometimes force myself to eat. Part of this is the taste-bud damage that has been going on for almost two years of these anti-angiogenesis drugs. Things just do not taste the same as they used to, not necessarily bad, but generally bland. My sugar addiction is one of the most powerful things in my life though, and so far, it at least keeps a few calories coming in to my body. I have lost 35 pounds over the last few months, and if I keep up at that rate, I will weigh the same as a normal person in 5 years.
Diarrhea: Sutent kept me afraid of being too far from a friendly bathroom, but the Votrient seems to be much easier, and I think I can now officially declare that it is no longer a side effect. The pain killer constipation effect may be the cause, but I am in balance so am happy.
High Blood Pressure: Daily Norvasc, Coreg, and Torsemide keep my blood pressure under control and I stay close to 125/90.
I have learned my way around the American healthcare system in the last few years. I have no problems with how my personal medical care is paid for, and how it all related to what they have been hashing out in Congress with what they call healthcare. I am working on a new rant about all of that and it is soon forthcoming.
From Sutent to Votrient
January 27th, 2010After sixteen months fighting my kidney cancer with the targeted chemotherapy drug Sutent, I sit here this evening having just finished my first day on the new drug I will be now taking for the foreseeable future, Votrient. Votrient is GlaxoSmithKline’s trade name for pazopanib (paz OH pa nib), and is similar to Sutent in that it is a targeted anti-angiogenesis drug. There are differences in Sutent and Votrient, of course, and while I did on and off cycles with Sutent (because the side effects become pretty unbearable at the end of those 28 day on cycles), Votrient is just take the medicine twice a day (ramping up over the first few weeks from 400mg to 800mg a day) until it stops working… no scheduled breaks, but the side effects are supposed to be much milder. The operative words there are “supposed to be”.
At the time I started taking Sutent I found a very few resources online of patients detailing their side effects, and the doctors would only tell me that everyone is different, and they were correct. Today there are many more good folks out there detailing their battles with the side effects of the cumulative toxicity of the drugs we consume, as well as their problems with government and insurance plans with these very expensive drugs that are use to prolong my life.
Typically for me I am like the first real patient ever taking this drug outside of clinical trials. I am able to get all of the clinical trial data about side effects and things like mean times before failure, but they just started selling this stuff in December. As I have over the last year or so, I will continue to post my experiences in the hope that they might offer some other person some knowledge about what to expect.
If you happen to be reading this and have some firsthand knowledge, like you were in a trial, about what I am going to be looking at over the next few months, please comment to this post. At the present time I am feeling about as good as I have over the last few months, and would just love to have confirmation from someone who has been down this path that I have a shot at continuing to feel at least this good. Better would be nice, but I don’t want to sound greedy.
Things are changing
January 16th, 2010I had my CT scans on January 12, and the operative words in the report are “enlarging pulmonary nodules are present”. What this means is my targeted chemotherapy drug, Sutent, is no longer working, so we are making some changes. I will be starting a similar routine using the drug pazopanib, which is marketed by GlaxoSmithKline under the brand name Votrient. I am starting now on my next mission, namely learning everything there is to know about this new drug (only approved by the FDA in August, 2009, so I will be in my normal role in life as an early adopter) and its side effects, which they tell me are milder than with Sutent. I will get that knowledge first hand soon, as I plan on starting the new routine in about a week.
This would be my chance to say goodbye to Sutent, and to thank the generous people at Pfizer and their First Resource program that has provided me with the very expensive drug at absolutely no cost to me. You don’t want to be near me ranting about the evil pharmaceutical industry and their profit driven single minded motivation, as it just is not true.
I am just getting started with GSK and their similar plan. We have hit a few early snags but it looks like all will end up well with them too, at least on the financial side. The real test is when I get the drug and start taking it and discover the side effects, and specially if it keeps my cancer from continuing to grow.
Stay tuned, keep your fingers and toes crossed, and the good energy headed this way.
We’re in the championship rounds now
December 26th, 2009Half way through the eleventh round of my Sutent targeted chemotherapy fighting my kidney cancer finds me still at it and hopeful… I have scans scheduled on the 12th of January when I will learn if these aches and pains in my body are as a result of my drugs working and killing cancer cells, or if the cancer is growing and causing the problems.
Just at the start of the last round I caught a horrible cold. I pondered whether it was just a cold, the flu, or possibly H1N1 or possibly even pneumonia. All I know is my nose has been running, I have been coughing and hacking and feeling pretty much like death warmed over for the last three weeks, and have decided that it is just the plain old common cold amplified by Sutent. Basically, I know I would have been happier being water boarded at Gitmo than I have been here, and am writing the CIA to offer them my new torture suggestions. Just not sure how to replicate the common cold.
The general side effects, fatigue, shortness of breath, pain, hand/foot syndrome, and taste bud issues are all with me still, but the ache all over feel really bad from the cold makes them almost seem almost non-existent.
I have applied for another year of financial aid from Pfizer’s First Resource Group that have been so kind to me by just giving me the Sutent. This stuff is quite expensive (regularly only $90,000 a year), and even with my “Cadillac” Medicare plan and a decent income (for a retired Mainer) I could not afford to pay the co-pays. I hope they see fit to continue the financial aid as I am pretty good proof that the drug works, but my tax returns show some extra income from the high oil and gas prices last year, but those are now long gone.
My sister Barbara, son Charles, granddaughter Taylor and niece Beth all visited me and helped make my holiday season a bit brighter. I ended up canceling my annual Christmas party as it just did not seem like a fun thing to do considering my health. I missed seeing all of my friends, so if you are reading this, please drop by.
Ten rounds down, who knows how many to go
November 25th, 2009I am just starting my break after finishing ten cycles of Pfizer’s cancer drug, Sutent, it’s Thanksgiving Wednesday and I have an appetite, and am so very thankful to be sitting here writing this blog entry. This last cycle, with the additional week break between day 14 and 15, has been probably the easiest one so far. I remain too tired to get out of my own way, am retaining fluid and have feet too swollen to put on normal shoes, am in minor pain (only had to go to Morphine three times this cycle) but it is generally controllable with low dose Vicodin. The taste issues become less and less… I am not sure whether I am just adjusting but things don’t taste right, but I no longer find the taste so offensive. Late in the cycle my appetite goes completely away, but my long standing sugar addiction manages to still kick in, and I get plenty of nourishment, just not the kind conventional wisdom says I should be getting.
I go for another round of CT scans in mid December, and I’m pretty sure that my cancer is not progressing yet. I just have to believe that I will know when it starts spreading and growing, and it is just not there yet. I’ll post results here as soon as I get them.
Since my last posting I have upgraded my computer systems and am running a combined Windows 7 and Snow Leopard system that works for me. I have to say that Leopard to Snow Leopard was hands down easier and way cheaper than Vista to Windows 7, but both do the job just fine for me, and at the end of the day they are only tools.
We finally got cell service in St George (Port Clyde and Tenants Harbor), but not for us unfortunate iPhone AT&T users, but I have it on good authority that it is forthcoming, and that news gives me hope. My soul is going nowhere until I can go to my poker game in Port Clyde and use my iPhone, so my message to AT&T is: Take your time, I’m enjoying life just fine.
Starting Sutent Round 10 in Kidney Cancer Battle
October 17th, 2009So, last night I took the first dose of the 10th cycle of chemotherapy fighting my kidney cancer. While the normal cycle of Sutent usage is 28 days on, 14 days off, the last couple of cycles we have been playing with the timing, and are now trying a one week break in the middle of the 28 days on. I am now calling a cycle two weeks on, one week off, two weeks on, two weeks off (seven weeks as opposed to the former six weeks).
The major side effect to me is fatigue, and the change did little to help that, and the taste issues were all but non existent and the chest pain was minimal and easily controllable with pain medication (Vicodin and time release Morphine at night). I had a couple of bouts with painful and swollen feet, to the point that no amount of pain killer helped (you know its bad if I miss poker because of the pain), and the doctors are currently studying the possibility of gout. They are doing a Uremic Acid test as a part of the normal screening that is done prior to each cycle, and while I know gout is a possibility, and I clearly fit the profile of someone who may get the disease, I think it will end up being just cumulative toxicity to the Sutent.
The cold weather is moving in on us here in Maine. The thought of shoveling snow in my current medical state is chilling, but I am still happy to be here, and have no plans to depart any time soon.
USAF Colonel A.J. Bird, Jr. (August 30, 1909 – March 4, 1955)
August 31st, 2009
Col A. J. Bird, Jr. USAF
I have a page on my website here with photos and many more details of his life. He was a career military officer, a command pilot with thousands of flying hours, was commanding officer of the Greenville Army Air Corp Base, commanding officer of the 464th Bomb Group serving in North Africa and Italy during WW II, was commanding officer at Hickam Air Field in Honolulu, served at the pentagon during the formation of the Air Force from the old Army Air Corps, was commanding officer at Patrick Air Force Base in Florida when we fired the first missiles from Cape Canaveral, and base commander at Itazuke Air Force base in Fukuoka, Japan
A year of chemotherapy later…
August 16th, 2009I just ended my eighth six week Sutent session (4 weeks on, 2 weeks off), am in my break period now, and feeling pretty good about things. I am going for new CT scans tomorrow afternoon, and am confident that they will show, as they did the last time I had them done, that the metastasized kidney cancer tumors in my lungs and abdomen are not growing and remain the same or slightly smaller. That is the best news I can expect, but I’ll confirm this in a day or two.
[Update] Scans are back and the tumors are all smaller than they were 129 days ago. The best news I could have gotten.
The Sutent side effect update would be that things are never quite the same. The profound tiredness is with me 24/7, taste bud issues change as I get deeper into the cycle, and this time my feet got so sore it was difficult to walk. The heavy duty narcotics I use (Morphine and Vicodan) do a pretty good job of controlling the pain, and I am quite comfortable when sitting or standing still. Just don’t like to go in motion anymore, and that just sucks. But God works in mysterious ways… he decided to make my pinched spinal cord nerves problem (from too much football, skiing, and dirt bike riding when younger) act up just now, and I spent a week or two in either neck traction or hobbling around on a cane, and that pain was so intense that the cancer pain became a non issue, but at this writing I am three days into a totally painless no narcotic time, which is way good for me.
I feel like I am the poster child for the health care debate currently going on in government circles. My health care issues came to the surface on my 65th birthday when I went for my welcome to Medicare physical. At that time I was covered by what I have since learned to be a horrible insurance plan that had been in effect for the previous ten years. I am the luckiest man walking to not have had the kidney cancer problem while under my private insurance plan. I had been under the care of a Primary care physician through all of those years, forever really, but because I had high deductible insurance I always just paid my way and it was never more than $500 a year tops, plus the monthly Insurance premium of $450 a month. I currently pay approximately $300 a month for first dollar coverage, no deductable, no co-pay except for small ones for drugs.
Medicare has served me well and efficiently through the last two years. It irritates me that they insist on sending me postal copies of all of the charges when I can get access online, but other than that, the system seems to keep everyone in the loop (Patient, Doctor, Hospital, and Pharmacy) quite satisfied. It is a perfectly good system for handling healthcare reimbursement to service providers. The big problem with Medicare is the system is approaching insolvency and must be immediately repaired (by taxing additional revenue and raising eligibility ages or similar plans) or it will prove that a government sponsored plan will not work.
Once Medicare gets put on a solid foundation again, then, and only then start talking about what to do next. In my opinion I would want to see all children under 18 come under Medicare also, but some revenue would need to get dedicated to the system to pay for them. Tax junk food, do whatever, it has to get paid for.
Then put everyone else on a level playing field and let them fend for themselves. Carry insurance if you wish, buy into the Medicare system or buy from a private or co-op insurer, and if you get sick your bills get paid. Don’t carry insurance and get sick, plan on paying the bill or declaring bankruptcy.
Finished Round Seven
July 4th, 2009Seven cycles of Pfizer’s oncology drug, Sutent, later I can say that things are improving a bit. I don’t know why, but I seemed to have things a bit easier this round. The taste buds did not go as fast nor as far, and ice cream almost tasted good through the entire cycle. I even managed to get to Primo for dinner while Jay and Anne were here, and things actually tasted good. The hand foot problems were almost non-existent, but the fatigue and dyspnea were still there, and daily doses of Vicodan kept the pain in my back and chest bearable. I go for new scans in August and we just wait and hope they show that things are stable.
I am really irritated with the woman who went up to President Obama during his recent town hall meeting on healthcare issues and claimed she had all kinds of problems with her health insurance because of her kidney cancer, trying to get sympathy for the plan she wants. Her story is full of holes from beginning to end, and it infuriates me that people think they need to lie and make up stories to further their cause. What is so silly is I am for the same cause. All I had to do was ask Pfizer for help and they are giving me the drugs to fight my kidney cancer. Medicare takes care of my doctor’s visits, lab work, and scans, but I believe I actually pay more in premiums than I get in services.
Had a great 4th of July with friends down river in Cushing, and the sun actually was shining most of the day. Now that summer in Maine has ended we are looking forward to a mild autumn and a not so cold winter.