Sutent

Three days and three pills and no side effects yet! That's a great start since you can have immediate reactions. Not it's a "wait and see" if anything cumulative starts cropping up which can happen now or far later.

Changing meds

My scan from last week was not good so they are taking me off the clinical trial of Avastin and Velcade and having me switch to Sutent. Sutent is a "first line" drug of kidney cancer but can carry some difficult side effects. When I was diagnosed last year it is what they prescribed for me while recommending that I go to Dr. Quinn to see if I qualified for IL-2. I'll start in a couple weeks. I could get none or all of the side effects but a couple would be the most common. Well at least I don't have to get IVs put on me twice a week any longer!

Scans

I got my CT scans and I have no new tumors, one that stayed the same, 2 that shrank and 1 that grew. Dr. Quinn says that this is a good scan and the sort of reaction that they would hope to see with the treatment. Not a cure but suspension of advancement. Very good news: Basically it has been a year and treatment has kept me as I was in 2009. It can go on like this indefinitely but if it fails at some point, there are many other medications to try and many in the works.

Side effects diminished!

My niece Debbie suggested that overdosing Motrin a bit, 3 tablets a day twice a day, might help after a few days since it has helped her and since we are closely related. I asked the doctor's assistant if Motrin was alright and got the "go". After 2 days of taking them it did help a lot and so here, a couple more days later, I have much of the joint pain reduced and can function much better. Thanks Debbie!

Cycle 2

Halfway done with cycle 2 and halfway to my next scan! My only side-effect is a lot of pain in the joints. I'm still up for walking though.

Cycle 1 done

I've had the first cycle of my doses for this trial which was 4 visits to the hospital. One took hours and the others about 1 hour each. The shorter infusion seems to be giving me joint pain and maybe some weakness. Like having arthritis... I'm still doing my walks and doing some work but getting up and down is a bit shaky. I might be good enough for a marginal game of volleyball but we'll see.

As time goes on the IL-2 treatments in April-May will have those side-effects go away so maybe this current problem will fade some. On the other hand, cumulative effects could get worse. Cross your fingers!

The next cycle starts Aug. 2 with a long day: give blood/urine, wait for results, talk to the doctor and get a 2 hour infusion. Then back to the 3 visits over 21 days that are short visits.

Steroids!

I emailed the doctor as to what in the new treatment would alleviate my remaining IL-2 side-effects and he said that one of the pre-drug drugs that is given to minimize the Avastin side-effects has steroids.

First new treatment

The clinical trial that I am now trying will go till I have a bad scan (checked quarterly). It's Avastin and another drug (technical names Bortezimib and Bevacizumab). One hits tumor cell division and one hits tumor formation (onto existing blood vessels). I have to go in 4 times every 21 days and get an infusion (IV). One visit will last about 4 hours for a blood draw, doctor visit and 90 min infusion and the other three are straight to the infusion for 30 min.
First treatment was yesterday and I feel almost normal waking up today. I feel about like Pre-IL2 like I felt in late-Jan almost recuperated from the surgery. Very interesting! Hand numbness is reduced (which can get worse from this trial!), grip is easier to do and my weakness feels reduced. Odd but I'll take it!
Here's a link to the trial web page: click here.
Since today is the day that I might have started to have new side-effects from the new treatment, it is very encouraging that, instead, I feel more normal than before!

Scans after IL-2 treatment

I talked to Dr. Quinn on June 30 and the results on my lung scans was mixed. Some shrinkage and some growth. The ones that grew had not been affected by the first rounds in Feb. or the treatment in April-May and so the doctor doesn't think they will be helped and to go over options. Surgery will not work well because there are 7 small tumors and would require taking too much of my lungs out. We could wait and observe (for more IL-2 affects) but that could be dangerous. We could take one of the pills available. Some attack the cell division and some attack the formation of veins that tumors use to grow. They have a trial going that involves two medications. One attacks cell division and one attacks the tumor connecting to the veins.

The trial involves one medication by injection and one by IV infusion so there would be visits to the hospital. It's only open for a set time period so it won't be available some time in the future. There are many possible side effects but most people have fewer than people taking other chemo therapies. If they don't find improvement in the first scan in 3 months than I'd go off the trial and on to one of the kidney cancer pill treatments. We think the trial improves my odds a bit so we're going to go with it. Depending which part of the trial they put me in, I will have to visit the hosptial 2 or 4 times a month.

I get brain and bone scanned July 2 to make sure I don't have anything going there that would preclude me from doing the trial. I take the first infusion/injection on July 7.

I'm still recuperating from the IL-2. My hands still have some carpo tunnel issues (numbness and inability to make a fist or hard grip) which may not go away and if that gets worse I'll get it treated. Strength is getting better but that is a slow process. Maybe I can do more than walking, like volleyball/racquetball, in 4-8 weeks. Assuming the new treatment doesn't weaken me which it might.

One day at a time! I feel pretty normal so doing my daily routine is easy.

3 weeks out

With 3 weeks passing since I got out of the hospital, I'm feeling better. I can take a daily walk now. I feel pretty normal except for being weak and having some numbness in my hands which gets worse sometimes or with use to hold things or type. The worst thing which was exhaustion with modest effort is about gone.

Post-hopital treat

Here's what I got, besides a new recliner, for enduring all this! It's a killer laptop with the fastest video card for games and a giant 18.5" monitor. Click here.

Scan

I get scanned 6/23 and see the doctor 6/30. Cross your fingers!

On the mend!

Hospitals are behind me for the foreseeable future and I'm getting a little bit better day by day but it will take many weeks to be up to par.

Out of the final IL-2 hospitalization!

I took a bad turn after my 4th and final dose. I had episodes where I could not breath and almost passed out. The IL-2 and general hammering of my body by IL-2 seems to have brought out a rhythm problem with my heart with the top and bottom half not communicating properly. They had to put in a pacemaker. This was very disturbing in that nobody in my family has ever had a heart problem although the procedure was very easy and non-invasive.
I'm out now but very weak from IL-2. It will be days or weeks before I can walk easily. Walking is a chore now since IL-2 effects are cumulative and I was not 100% when I went back in 2 weeks ago for week 3 and maybe 20% recovered when we started week 4.
Now it is time to wait and recover and see how it did!

Final IL-2 week

I've had 2 doses and they skipped one due to blood pressure. They've got the pressure up so we'll probably do 1 more dose. I'm weak and hyperventilate easily. I probably come home wed or thurs.