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I’m still working on those pesky Gleevec side effects. I don’t like to complain all the time and I don’t like to feel terrible if it’s not necessary so I keep plugging away at it.

The most debilitating is the fatigue, since that can be caused by either low iron or low red blood cell counts the only thing I can do is take iron. I take a multiple vitamin with iron every day and that has made some difference. There is nothing that can be done about low red blood cell counts. However, forcing myself to exercise seems to improve the fatigue in the long run so I’m trying to get back into it. This is difficult, to say the least.

The next big problem is diarrhea, I’ve found some relief in following an IBS diet with lots of soluble fiber and minimizing insoluble fiber. Probiotics and Citrucel are my friends! Since I discovered soluble fiber I have been able to mostly give up Immodium. One less drug to take.

Thin dry skin seems to be helped slightly by using a heavy cream with cholesterol in it. I use a product made for babies with eczema (Triple Cream) and it does help. Nothing seems to help the spontaneous bleeding in the skin of my arms and in my eyeballs. Some research says that Vitamin C and bioflavonoids help. If they do help, it’s not a lot.

Calcium and magnesium supplements do seem to help with the horrible muscle spasms. The problem is remembering to take them, and I just read today that calcium interferes with Gleevec absorption so it needs to be taken several hours apart from the Gleevec.

I have reached my 5th cancerversary this month. I’ve been taking Gleevec since the day after Thanksgiving 2007 except for a brief 9 day period last August where I tried the Sprycel disaster. The life expectancy for CML patients before these targeted therapies is at most five years. So now I’m still living and that is great!

 

About that Sprycel

It was an epic fail. I started out with a little nausea, and progressed to every possible problem of the digestive system. Each night I would take it and would start having symptoms about 30 minutes later. After 5-6 hours I would start improving. This got worse every night until the 6th night I got so dehydrated that I started having  a lot of confusion (symptom of dehydration) and could not figure out what I should be doing to treat the dehydration. By about 2 am I was thinking I was dying. Then it started wearing off and I figured out I should start drinking the baby’s Pedialyte. That was a big improvement.

The next morning I called my oncologist and told the nurse my sad, sorry story in much greater detail than I will tell it here (be glad!) and they decided that I should go back on Gleevec. If someone had told me over the last five years of horrible Gleevec side effects that one day I would be grateful to have them back I would have laughed my head off. But here I am. Very, very glad that Gleevec is still an option for me.

On the other hand, I got 2 days off of both of them to “recover” and that was wonderful. But even a week off of Gleevec means your body has to adapt again, though fortunately not as much as the first time I started it.

At my check-up this week my oncologist told me he wanted me to switch to a different drug because of all of my side effects, he said it was a quality of life issue. I have to admit I was getting close to wanting to quit Gleevec, myself. The side effects are rough. He said I have more side effects than any of his other patients on Gleevec and most have no side effects at all! I cannot imagine a life like that at this point.

So I came home and researched Sprycel, the list of side effects for it look at least as bad as Gleevec’s, but apparently most people don’t have any of them. So here’s hoping it will be good.

It will take the doctor’s office and the insurance about 2 weeks to negotiate over whether or not the change is okay and then I will start!

So, almost five years in, I’m still PCRU but switching to a new medication. More adventures for me!

 

Still PCRU

I just got the results of my BCR-ABL test and I am still in molecular remission! So yay for Gleevec, still doing its job.

It’s been a while

I haven’t posted in quite a while.
I’ve noticed on the CML blogs I follow a lack of updates means either the writer is doing so great he/she forgot about CML or he/she is in serious trouble medically.

So this is to let anyone know who might be interested – I’m doing very well. I’m still PCRU, my doctor told me that he expects I will live as long with CML as I would have otherwise, as long as I keep taking Gleevec. And I’ve started figuring out how to control some of the side effects.

I found this PowerPoint presentation on The Life Raft Group’s website:

http://www.liferaftgroup.org/treat_gleev_sideeffects.html

The Life Raft Group is for patients with Gastrointestinal stromal tumors but Gleevec seems to work for GIST so they have the same side effects we do. Most of my side effects are under control or manageable following their advice.

Still PCRU!

Did I mention that I have somewhat of a love/hate relationship with my Gleevec? Mostly it’s love, but sometimes I look at those 4 little pills and just don’t want to take them. Because they cause problems, lots of problems. Like nausea, exhaustion, extremely dry skin, eye bleeds, skin so fragile that the slightest touch causes bruising, inflamed eyes, diarrhea and terrible muscle cramps/spasms. I generally have one or more of these every day.

On the other hand, without taking Gleevec for the last 3 years I would be dead by now. So there’s cause for some love there.

On my last visit to the oncologist he talked again about switching me to Sprycel or Tasigna, but he is reluctant to do that because my leukemia is so perfectly controlled with Gleevec. And what if those other drugs couldn’t do such a good job? And then what if my particular mutation decided to mutate just a bit and Gleevec no longer worked? So I’m staying with Gleevec for now.

The good news is that Gleevec goes off patent in 4 more years, a generic should be much cheaper.

PCRU!

I had my PCR (Polymerase chain reaction) test to see if any signs of the leukemia could be found. And woohoo! nothing was found. So I am officially still PCRU (PCR undetectable) again.

In case you want to learn more about PCR testing here is a link to a Wikipedia article about it:

http://en.wikipedia.org/wiki/Polymerase_chain_reaction

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