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A MyLeukemiaTeam Member asked a question 💭
Chapel Hill, NC

I have been taking Gleevec for one year now. It is my third TKI. The previous two were discontinued because they caused severe pulmonary hypertension
Everyone's experiences with various treatments can be unique. Therefore, I like to be careful when l discuss side effects so as not to potentially deter others who are trying a similar regiment
However, I do have some questions for those of you who take Gleevec (Imatinib).
I want to know if any of you have experienced insomnia, loss of… read more

October 25, 2022
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A MyLeukemiaTeam Member

I took Gleevec for the first 11 years after dx. It's hard to remember the effects. I do remember having to mix it with enough food and water very carefully or I'd throw up. I'm on my 5th drug, I think. Bosulif has given great results with a minimum of effects. I take it at lunch. Must eat enough, only a little water or I'd get nauseous. Then, I get so sleepy, it's as though a sedative was given. Very merciful. I sleep through the nauseating and painful side effects and have some coffee when I wake up. So the day long side effects of gleevec are compressed into 2 hours and I can have a few hours to actually do things. I wish you all the best!

October 30, 2022
A MyLeukemiaTeam Member

I lost all my hair due to chemo, of course. I was a redhead but when my hair grew back, it had changed to an unusual blonde shade. I let it grow long and while I didn't have any issues with hair breakage while taking Sprycel or Tasigna, I am having that issue with the Gleevec. I brush my hair and so much breaks off. One brushing leaves the brush full of hair.
I also noticed my skin was very dry. It's often hard to tell what causes dry skin. It wasn't cracked or super flaky but it was almost painful because it seemed so tender. This will sound terrible but the only thing that helped me was limiting showers to twice weekly and washing off very gently using a mild lotion and a soft 100% cotton wash cloth in between those days. I don't do anything to get really dirty like sweat or play any sports, I just sit around the house. Since I have neuropathy in both feet and legs and had septic arthritis in one knee joint (which sometimes still swells) limiting time in the shower reduces my risks of falling as well. My oncologist's office said that was actually a good idea.
You get this illness and it's kind of like there's no going back to life as it once was. You can still enjoy life, of course but anything you need to do to cope or help yourself (as long as your doctor agrees it's not harmful) is okay.
There is an olive oil based facial cleanser made by a company called DHC which was the absolute best facial cleaner I've ever used. It removed every speck of mascara. It is just lightly oily at first then with water, it turns into a wonderful emulsion on your skin then completely rinses away without leaving any residue whatsoever. It is not cheap. About $30 for 8 ounces. I'm sure there are generic brands available now as I used it quite some time ago. DHC or other companies probably have similar products for the body. It would be absolutely perfect for your skin as it is 100% non drying.
I have used medical grade Vaseline (from hospital stays) on my legs/body and applied B&BW cream in the tube over that.
As for your hands being slick, I know it's awful but you may need to wear non latex gloves so your don't have to wash your hands so frequently while you're around the house. They will also give you a good grip on dishes, stuff from the fridge. As for driving, I think a pair of fingerless leather gloves like bikers wear would work great. That's exactly why bikes wear them- to grip the handle bars.
I don't think emotional outbursts would be considered unusual with an illness like this. You have to realize that your body is working very hard to keep itself well. When you're body is tired, your mood can definitely be affected so don't be too hard on yourself.
Good luck to you!

March 11, 2023
A MyLeukemiaTeam Member

I never was a very nervous person but there's times I get really upset over stupid stuff. Can't find something in my pocketbook. I must really show it too, the one whose asking for my card will just say. That's OK, give it to me next time but, I keep looking getting more & more upset. I was never like this. Dry skin. Lotions just last for a little while.

February 28, 2023
A MyLeukemiaTeam Member

I assume your husband's leukemia was diagnosed in the chronic stage, meaning he did not have IV chemo... I was diagnosed during an acute lymphoblastic "blast" phase, which required IV chemo. I initially presented with ALL, which affects lymphoid cells, but subsequent testing revealed that myeloid cells were also cancerous, hence the CML. Four rounds of IV chemo resulted in remission.
During and after the IV chemo, I took Gleevec sporadically. My treatment was interrupted by a move to NC which resulted in more in-depth testing, which revealed I was incurable and not a candidate for stem cell transplant. (Which I probably would decline anyway). This also meant I would be on oral cancer medication indefinitely. I was prescribed Sprycel for two years. It worked great, had very few side effects and comparing it to all three TKIs I've taken, it has been the easiest to tolerate. I did have nausea (which was easily controlled by ondansetron [Zofran]) Unfortunately, I suddenly gained 15 lbs in a week from fluid retention and a pleural effusion with severe pulmonary hypertension were found. I was treatment free for a month, then prescribed Tasign for three months which also caused severe PH so we went back to imatinib.
I am hoping the Sprycel induces a complete response for your husband. Since he has survived twelve years with the CML, it's a good sign that he may have continued success! Best wishes to the both of you...

November 19, 2022
A MyLeukemiaTeam Member

My husband has been on Gleevec 400mg for 12 years now. 1st drug but he has never received a complete response and he does have side effects. Nausea every night but he takes at bedtime to sleep through most of it. Bone pain off and on and diarrhea most days. In the beginning he still had lots of night sweats, stomach pain, and lightheadedness which seems to have subsided in these later years. But because he hasn't received a complete response and he does show more and more resistance to Gleevec, we are considering Sprycel per his new doctor. Should be less side effects, a lot less, and maybe a complete response. We will start the prelim testing in Feb probably as they have to monitor the heart. He was on anxiety medication for quite a few years but no longer.
Best wishes to you.

November 18, 2022 (edited)

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