Jan 24, 2013 - 1:13 pm
A Concise Guide for Sutent User Newbies (new users)
* Sutent does not "work" for everyone, but it does work for a LOT of people. No one knows for how long it can work because it has only been on the market for a few years.
* I have stage 4 RCC with a lot of small mets in my lungs. I am one of the people for whom Sutent works and I recommend it! I am not getting any kickbacks for saying so from the manufacturer (alas). I have been on it for about 19 months.
* At this point the disease itself is not directly causing me any disruption, discomfort, or pain. Any discomfort I have is not directly from the disease but from the side effects of the Sutent. The price for halting the progression of the disease is those side effects. These vary a lot across patients and even for individual patients across Sutent cycles. The side effects are not trivial, but generally not so bad as to prevent normal functioning and quality of life (at least by my experience). Coping with cancer at this point is simply coping with those side effects, but nothing worse than that.
* The side effects of Sutent vary from the mild to the very annoying. They also vary from the medically irrelevant to the medically potentially dangerous.
* I find that they are milder on a two-week-on-one-week-off cycle than the 4-2 week version. I am on the full monty, the 50 mg dose, which some people cannot tolerate. I think you are better off on 50 mg with shorter cycles than 37.5 with longer cycles.
* I think the two common and most dangerous potentially for most people are high blood pressure and slow thyroid functions. There are some people who experience disruption of liver functions or heart functions; one needs to keep an eye on those things. Blood pressure and slow thyroid issues are relatively easy to treat and control but are dangerous if not controlled. Simple blood pressure meds work for me and I go off them when I am on the breaks in the Sutent cycle. Slow thyroid gets fixed with a thyroid supplement that has no other side effects. My thryoid has gotten slower and slower and I have had to adjust the thyroid supplement accordingly, but nothing worse than that. Slow thyroid and high blood pressure are actually a mixed BLESSING, because they are highly correlated with the Sutent being EFFECTIVE!
* Mildly annoying side effects:
- MANY people get mouth, hand, feet sores. I have gotten none, but I think my experience is not typical. I understand these are manageable.
- Taste changes in mouth late in cycle - ****y foods, salty, alcohol, mouth wash are very irritating when this happens. Taste changes are milder on a 2-1 cycle compared with 4-2.
- General muscle weakness in arms and legs late in the cycle, disappears during Sutent break. These are also milder on 2-1 cycle compared with 4-2. Just take stairs slower and carry fewer groceries.
- I get watery eyes late in cycle. Nothing to do about it.
- My body temp drops quite low and I feel cold a lot. Drops to 35 degrees C (94.8 F). Might be thyroid related, or not. Nothing to do but turn up the thermostat and add layers.
- General feelings of tiredness and fatigue. Fixed by taking naps.
- Hemoglobin can drop. Fix by taking iron supplement. Blood fats (cholesterol and triglycerides) can shoot up, partly because of thyroid. Adjust diet and, if necessary, take a pill that knocks them back down.
- Hair turning white and skin pale. I do not care much about this (on male geezers it is supposed tolook distinguished) but women patients complain a lot about it. Can cure it with hair color. My skin is a little dry, including in some unmentionable spots, but nothing some skin cream or Vaseline cannot fix.
* Very annoying side effects:
- For me, the only really serious annoyance has been gastro side effects: the "runs," painful gas, cramps, sometimes nausea. I have been wrestling with finding ways to control this for over a year and a half. Most people seem to control it more easily than me, but what they use has not helped me. This past month I have tried a couple of new things and at long last they seem to be working. For me, this has been the major factor negatively impacting quality of life, but really the only such factor.
* Emotional side: This of course also varies widely across people. I was pretty scared and stressed in the first few weeks after I discovered I had mets in lungs and was Stage 4, rather than Stage 1. After that, I made my peace with it and I would say that at this point I am not affected emotionally at all, am as chipper and optimistic as healthy people my age (I am 62). I live a normal life, work, do pretty much all the things that healthy guys my age do, minus the jogging and weight lifting. When I was first diagnosed, I was sent by the oncologists to a social worker for counseling. She invited me into her office with boxes of tissues, since so many people sit and cry there under the cir***stances. I ended up telling her jokes and picking up HER spirits. I am not depressed, I am no moodier than before I got cancer. I do not feel dread on a day-to-day basis. My most distressing experiences are all gastro side effects. I am somewhat religiously observant but I do NOT think my emotional state has anything to do with that.
* I have LOTS of small mets in my lungs. I can also do 30 pushups at age 62 (how many healthy blokes my age can say that?) and my pulmonary functioning levels are those of a health 45 year old (how many healthy blokes my age can say that?). I do get out of breath more easily, but I attribute that to cutting back on exercise when I turned Stage 4.
* I do still get a bit nervous when waiting for results from CT's and similar, and I have put my financial affairs in order, just in case. But at age 62, EVERYONE should do THAT. Once put in order, I ignore the subject altogether and get on with enjoying life.
* Do things you like to do and that give you pleasure. There is life after RCC!