Posts Tagged ‘Sutent’

We’re in the championship rounds now

Saturday, December 26th, 2009

Half 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.

A year of chemotherapy later…

Sunday, August 16th, 2009

I 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.

More on Kidney Cancer and Sutent

Saturday, March 7th, 2009

I have now finished four rounds (28 days on and 14 days off) of my chemotherapy for my advanced kidney cancer. This round was overall the easiest so far, and the news (see my earlier post) that it is working probably caused me the believe that. The side effects, all previously outlined and detailed, were overall easier this round, but I had a few days where they were the worst yet. There were two days that the foot pain was so bad that I had serious trouble just walking, and I spent a great deal of that time just sitting in a chair with a heating pad on my back.

Food tasted fine until almost three weeks into the routine, but it changed, as usual,  such that everything tastes like cardboard seasoned with black pepper, and I am, at this writing, nine days into the break and my taste is almost back to normal.

The big discovery this go-round was Extra Strength Tylenol. It’s much better for the overall pain than Ibuprofen or Aspirin. My blood pressure remains under control with daily medications (Coreg, Diovan, and Norvasc) and I find that an occasional puff of marijuana takes care of the mild nausea and the chest pains. I have had a few problems with diarrhea, but it seems to be more diet related as opposed to chemo induced.

I remain constantly tired and short of breath and am looking forward to the end of a terrible Maine winter so I can at least get outdoors and try to get a bit more active.

Sutent is working

Monday, January 19th, 2009

I had new CT scans done today, and the preliminary reads show that the tumors in my lungs and the one in my abdomen are all shrinking. Thank you to Dr. Ramdin for calling me this evening with the preliminary results, thank you Pfizer for this miracle drug, and thank you everyone who is sending the positive prayers, thoughts and energy this way. I’ll update this post when I get actual numbers which are soon forthcoming.

Update: For those who want to get really serious about this, here is a link to the Radiologist’s report on the scans

Sutent, Round 2

Monday, December 8th, 2008

I just concluded the second round (28 days on, 14 days off) of Sutent in my fight against kidney cancer. I learned a few more things this round, and had a few new side effects, but all in all it was a pretty good time. The issue is, of course, the side effects. I was, once again, almost halfway into the second round before things started getting bad, but remember that it did not turn decent until a week after I stopped taking the drug. What that means, at least to me, is that I’m looking forward to feeling okay for about three weeks in a row, and then feeling bad for one, really bad for the next, and then back to bad, completing the six week cycle.

I’m describing the side effects so that anyone who may read this and who, like me, has just started this learning process and is trying to figure it all out. The worst part is the thing that I describe as just a general fatigue.

I just can’t find the energy to do anything much except to sit and breathe, which is way out of character for me. I can still get around fine, drive around and visit friends, but am regularly quite short of breath doing silly little things like going out to the car, and forgetting something and having to go back inside, upstairs and back to the car and have to stop to rest for a minute or so before driving.

The mouth issues are much better this cycle. No sores and just slight tenderness in my gums so chewing is no longer a problem as it was, but the taste is still seriously screwed up. I am working on figuring it out but it is pretty complex, being a subtractive process as taste buds stop working.

I think there is a way to figure out what is happening, and what to avoid by eating things that now taste horrible to my new senses. Some of my favorite things… steak with Dale’s sauce, cured ham, and ice cream to name a few important ones… now just make me gag.

The tingly hands and soles of my feet issues are still with me, but I think it is not quite as bad as last cycle. I am most comfortable wearing my LL Bean fleece lined moccasins, and it’s cold here in Maine now and snow is already on the ground, so socks and heavy footwear become required, and I’m looking for good solutions.

The new thing this cycle is the chest pain, similar to low back pain, but higher and more in my lungs, and is, what I hope is the drug causing the cancer to stop growing or better yet shrink. I think this is called tightness in your chest by some people.

I am looking forward to feeling better as we move closer to Christmas. The issues are about as bad as they get right now but I should have a few good weeks ahead of me.