9 replies to this topic

[WoofWoof]

Your last comment "Feeling good is not the objective for these drugs.  Fighting the leukemia is what is important for him."

Is so very true and we must keep this as our goal.

Way too often (myself included) we lose sight of the fact that stopping this disease is the #1 priority. Yes, most of us suffer side affects and the control of them is very, very important to our well being but we wouldn't have side affects, much less life if the cancer wasn't stopped in the first place.

Thanks Trey for putting it back into perspective.

[CallMeLucky]

I think it also comes down to where you are in treatment.  If you are just starting out, or if you are not having a favorable response, then you need to focus on disease control and doing whatever is necessary to get it under control, including putting up some side effects that you would prefer you didn't have.  However, once you are stable and have been for a period of time, I think it is reasonable to start having the discussions with your doctor about what other treatment options are available if you are not feeling well from side effects.

I started on Gleevec and the side effects were not great (heavy fatigue, and muscle pain).  I was responding well, so I stuck it out for about 2 1/2 years.  I got to a stable MMR/CMR and at that point I had a conversation with my doctor.  I said that now that things were stable and it looked like I might actually be living with this for a while, then I would like to look at ways to manage it more like a true chronic illness and that means trying to minimize side effects without jeopardizing status.  I switched drugs, had some issues, lowered dosage and working way back up looking for good balance between drug/dosage/ and quality of life.  The key is being in a place where it is reasonable to do that, and also accepting that if things change, it means you have to go back right away to doing whatever works.

I actually read an article about Kareem Abdul Jabar and it was a very similar viewpoint.  He had taken a drug for a while but the side effects started to impair him too much so he switched.

In the case that Trey was referring to, that was someone who was recently diagnosed and did not have disease under control.  I think that is a big difference.

[Trey]

Actually the guy had been diagnosed a couple years ago, had a poor response to Gleevec, tried Sprycel but was put off by the side effects and quit too early from what I can tell.  He then went back to Gleevec which, surprise, did not work well again, but the side effects were lessened.  But the cost was a major loss of response.  The point really is that sometimes a person is in danger for their life and must gut out the side effects to get through to a "better place" as far as disease state is concerned, even if that better place is a somewhat painful one physically due to side effects.  The battle really is a life and death struggle, and if it is a choice between letting the CML get the upper hand or having physical pain, it is the wise choice to endure the pain.  How many times have people started Sprycel only to quit within days due to the headaches?  I have seen someone go on to transplant because they refused to endure the Sprycel headaches which are normal for a couple weeks after starting.  Too many times we look at pills as something to end the pain.  That is not how we should view these drugs.  The point is to save our life.  After that the pain thingy takes priority again and we can deal with it.  I just hope the original recipient got my point the way Woofie did.

[rich1403989321]

so, I'm new.  Took my second dose of Gleevec last night.  Does it generally take a few days for the drug to take hold and to begin to feel the side effects or is it normal to feel them from the first dose on.  So far, after two doses, I don't feel any different than before the Gleevec (not that THAT was great to begin with!).

thanks

[Trey]

It is not instantaneous.  Let us know again in a few weeks.

[SunNsand]

I found that I needed to change my perspective. I think because our treatment comes to us in the form of pills, we expect pills to "fix" whatever ails us, not cause us to feel worse, in some cases. Cancer patients that go through IV chemo are not surprised by feeling crappy during treatment. They know they must endure the discomfort of the treatment to continue to live.

[scuba]

Trey is spot on here. First and foremost is disease control. That is where the focus has to be when newly diagnosed. It is life and death at that point. By the time CML is diagnosed - one's body is wracked with a wildly growing cancer. Leukemic Stem cells are outnumbering normal stem cells. The bone marrow is getting squeezed. The risk of acceleration and blast crisis is very real. Untreated - you are dead in a couple of years - and not a good death, but a painful, miserable way to go.

So first order of business is to get the disease population down - way down. And whatever drug someone is started on, it is very important to track effectiveness right away. Blood counts are the obvious first guidepost (getting back to a normal blood count), but not the most important. The first test is FISH coupled with bone marrow examination. It is vital that patients understand the FISH test and get it done. Only then do you know if the drug you are taking is working. If is not - don't waste time screwing around with that drug. Try another one. We are so fortunate to have a wide choice of drugs. Too many patients stick with one drug because their Oncologists are ignorant about options. Find a drug that hits the CML hard in the beginning. Do you own research if you can. But don't wait too long to give a drug a chance. It needs to be working in a meaningful way within six months.

Once you have control and you get to zero FISH and PCR less than 1.0% preferably 0.1% (MMR) - then quality of life comes in. By that time, your body should have adjusted to the initial side affects. If it hasn't, then experimentation with dose, a different drug, yoga, or something comes into play.

The good news (and this is where I might be departing from Trey's thinking) is that the population of CML is so greatly reduced and that the bone marrow is in so much a better shape (healthy, normal cells have repopulated the marrow, CML cells are few and far between or even quiescent), that you could stop treatment altogether and have months before it shows up again just like it was starting before you knew you had it. Experimenting with dose during this time, Drug cessation, changing drugs are all something one has time to do once the disease has been decimated.

I use the analogy of rats. When you don't see any rats, it doesn't mean they aren't there. It just means the population is low enough that control is effective. There may not be enough food for the population to expand. Some preditor (i.e. T-cell) is constantly eating them. Your neighbor may be killing them. Something keeps them in control, but they are not gone, but it doesn't matter because you can live with them. You don't see them, there is no evidence of them - so all is good. A single trap by the garbage is enough. But if you see a rat - or worse you see one in the trap. Then chances are you have a lot of rats - and one trap won't manage what is otherwise a growing population. You need to put out a lot of traps in order to get the population under control. Even add poison, cats, drone missles. Anything to get the population down.

CML is the rat in our blood stream. It is all about population control. Keep the population from growing and the normal blood has room to exist. And that's why we stay alive. There is a chance that the second to last rat gets killed (it take male female to make more- so having one rat left is o.k.). And if that happens - you're cured. But that one rat is still looking for a mate. And so what is cure?

[Melanie]

Every time I start to think about letting the side effects or the measures you have to take to control them are just not worth it...I look at all the other chronic diseases out there that people are coping with like Chrones, diabetes, amputees, ACL, MDS, MS, ALS, etc, and what they're having to do just to get through each day...I'm good.

[CallMeLucky]

Rich,

Everyone seems to have a different experience.  I've known people who immediately threw up their Gleevec pill the first time they took it and others like me who felt pretty much nothing.  Over time I did develop side effects to Gleevec.  For me it was muscle pain and fatigue that started off annoying and then got pretty bad after a couple of years, I actually had trouble getting out of bed and standing up without muscles spasming and locking up.  I know plenty of other people who have been on Gleevec for years and have not had many issues at all.  One of the common side effects of Gleevec for many people is diarrhea, which I never had even once.  So it really comes down to your own experience.  If you tend to be impressionable, then be careful reading too much into what other people experience.  Your experience with the drug will be unique to you.  Something to keep in mind is that when a side effect does show up, understand that their is a good chance it will go away.  It may take a day or a week or a month, but many of the side effects tend to cycle.  Some will come and go, some will come and never come back.  It is also not uncommon to have a new side effect show up possibly years into treatment.  There are things you can do sometimes to help alleviate and deal with them.  Most can get by and certainly get by for a while.  Some will switch drugs.  The points in this thread are to be taken to heart.  If the drug is working, try to stick with it, if it is not working, then get onto something that works better.  Once you get everything under control and you are stable for a good period of time, then it can be reasonable to consider if you are feeling the best you could be, but early on it really is about making sure you are doing everything you can to get it under control.

Best of luck...

[CMLSurvivor]

When I was first diagnosed I didn't worry about the side effects. My main goal was to get to PCR as quickly as possible and stay there. I would ask my doctor what I could take to make my side effects more tolerable and took that to combat the effects.  I think people jump a little too quickly from one medication to the other. They all have some type of side effect. We will never feel "Normal" the way we did before CML, we have to find our "New Normal" and try to function as best as possible. To this day and I have had CML since 2007, Immodium is my bestest friend in the whole wide world! A little sad I know, but that is my "New Normal".