34 replies to this topic

[Tenderheart]

I am thinking of asking my oncologist about changing from Gleevec to Sprycel. I have fought the nausea so long that it is a big determining factor in ongoing treatment I think. I am on 600 mg of Gleevec. Are there things I should consider? Are there specific things I should ask my doctor about? I am very interested in your thoughts...Thanks so much!

[hannibellemo]

We all react differently to these drugs. I know, that's not a news flash,  but the one thing we all seem to agree on is that after 6-12 months on a drug we seem to acclimate and things get better or they don't. If they don't, things may never get better on that particular drug and a switch could be looked at depending on our particular tolerance for that side affect and how well we're doing on the drug, etc, etc.

I went through a 6 week period on G where I felt nauseous on a daily basis. Not to the point that I felt like I was going to vomit any second, just mild nausea. Started about 4-5 months after I had been taking it and it went away as suddenly as it arrived and I felt great again until my liver took extreme exception to G and I was switched to Sprycel.

I hated Sprycel for the first 6 months - we've now reached a truce where life is generally good. I still have new side affects crop up occasionally and I get a bit panicy and wonder how long these will last. I don't think, for most of us, that TKIs are drugs we can take and forget about until our next dose. As Gilda Radner's title to her book about her struggle with ovarian cancer says, "It's always something!"

Good luck!

Pat

[Tenderheart]

Thanks so much, Pat, for the information. And thanks for the reference to Gilda's book--I just ordered it! I am not sure what I might do about my meds. I want to look into the options a lot more before I talk to my oncologist. I have learned the hard way that I need to do the leg work prior to seeing the doc. I appreciate all the help. Donna

[lala]

Hi......I am on gleevec 400...thanks to Trey's advice, I am taking 4 100 pills a day and am feeling much better.  Could you do that?  And could you take a lesser dose?  I take 2 pills at lunch and 2 at dinner.  The horible fatigue that I had in the mornings is gone....I used to have trouble walking into work before I split the dosage....and the little pills are much easier on my stomach!  All I had to do is ask my doc....good luck!  Lala

[TroyLynn]

I have found I prefer Sprycel....in the side effects department.  I was on Gleevec 400 for 20 months while my December bone marrow biopsy came back with no cells, I had an increased in my blood (from 0) both in December and in April.  Hopefully, I will know in July if Sprycel has remedied the evidence in my blood.  I had problems with anemia that affected my breathing on Gleevec, anxiety, weakness....everything, with Sprycel (100mg) headaches are an issue and I still get tired, but I feel I can breath way better.  I do wish you luck and health, take care, -Troy-

[hannibellemo]

Donna,

Glad I could help a little but now that I've reread your post I see I've totally ignored your questions in my answer!

Why are you taking 600 mg. of G? How long have you been on G and how long at that dosage? What response level are you currently? CHR, CCyr, MMR, PCRU? This may help me/us fine tune our suggestions for you.

Pat

[Trey]

Any side effects that cause unecessary suffering should not be tolerated very long before switching drugs.  There is no reason to stay with Gleevec if it makes you miserable when other options exist, and the other drugs will likely also work better against the CML.  If you are not splitting the dosage (300mg twice per day) then you should ask the Onc about doing that (or just do it as many of us do).  Also, ask the Onc why 600mg is necessary for you (400mg is normal starting dosage).  The difference between 400mg and 600mg can significant when it comes to side effects, especially for women (my observation from this forum).

[jjg]

I know 400mg is the starting dose in the US but following this study:

Impact of early dose intensity on cytogenetic and molecular responses in chronic- phase CML patients receiving 600 mg/day of imatinib as initial therapy, Hughes et al, Blood November 15, 2008 vol. 112 no. 10 3965-397

Abstract

We conducted a trial in 103 patients with newly diagnosed chronic phase chronic myeloid leukemia (CP-CML) using imatinib 600 mg/day, with dose escalation to 800 mg/day for suboptimal response. The estimated cumulative incidences of complete cytogenetic response (CCR) by 12 and 24 months were 88% and 90%, and major molecular responses (MMRs) were 47% and 73%. In patients who maintained a daily average of 600 mg of imatinib for the first 6 months (n = 60), MMR rates by 12 and 24 months were 55% and 77% compared with 32% and 53% in patients averaging less than 600 mg (P = .037 and .016, respectively). Dose escalation was indicated for 17 patients before 12 months for failure to achieve, or maintain, major cytogenetic response at 6 months or CCR at 9 months but was only possible in 8 patients (47%). Dose escalation was indicated for 73 patients after 12 months because their BCR-ABL level remained more than 0.01% (international scale) and was possible in 45 of 73 (62%). Superior responses achieved in patients able to tolerate imatinib at 600 mg suggests that early dose intensity may be critical to optimize response in CP-CML.

It seems that 600mg Glivec is the preferred starting dose in Australia. Of course we also have to consider that in Australia there is not yet the possibility to use the 2nd generation drugs (i.e. Sprycel or Tisigna) as front line treatment unless one can pay for it out of pocket. Although I read they will consider changing this next month....I'm not holding my breath. So in Australia we must first fail glivec either via response or via side effects before we get access to Sprycel. My hem told me that she had a patient with bad side effects on glivec but an otherwise good response, who switched to sprycel only to discover really really bad side effects. She was eventually able to get approval to put her back on glivec as a special case.

I want to stop treatment and try for a pregnancy asap as I am 38 so I am esspecially keen for a fast response. I started on 600mg of glivec 4 months ago with some side effects but liveable. It has been tempting to "fail" glivec as the 2nd generation drugs tend to give a faster response. However, it does seem that I am responding well to glivec: my PCR went from 72 to 0.52 in 3 months. I don't know if my very close to normal WBC of 13,000 at dx contributed to the speed of response, i.e. is it more likely to slow from here? If it was not for the pregnancy thing I would be absolutely thrilled with that response...even so it is a good result. I guess it is reasonable to sit tight on 600mg of glivec?????

Along with my 3 month PCR I also had a test to measure the trough concentration of glivec. I'm quite tall (nearly 5ft 10 1/2") but otherwise small (123-125 lb) so we originally thinking that maybe I should be on a lower dose. However the concentration was just over 1000 ng/ml which is more what they expect for somebody on 400mg. Does anybody have experience with these trough concentration numbers? How constant are they? Is there anything I could be eating/doing that causes the relatively low concentration? I take glivec with breakfast which is normally heavy bread and tuna/eggs but I must confess to washing it down with pepsi max - not sure if you have it in the US, it is like coke zero but sooo much better...especially for breakfast :-)

Sorry for the mini post hijack... I hope my questions are kinda relevant

[Tenderheart]

Thanks, Lala, for your response. I have been dividing my dose for a long time now, taking 2 100 mg tabs after breakfast and 4 after supper. I couldn't manage without doing that. Thanks again!

[Tenderheart]

Thanks, TroyLynn for your response. I have so valued the care and time taken by so many on this website. I don't feel so alone and without resources now.

[Tenderheart]

Pat, you are always so helpful! I appreciated your answer the first time! But to clarify your questions now: I am taking 600 mg of Gleevec now for probably 3 years. (I have been on Gleevec now probably 7 1/2 years total) Initially my onc had me on 300 mg because my nausea was hard to control. I have always taken the 100 mg tabs, and in divided doses for some time. But I just couldn't get my lab work to come out like he wanted. He had me increase to 400 mg, and again I couldn't tolerate the med. I was taking reglan 3-4 times a day, plus GERD meds, and compazine and phenergan pretty often. I just hate the sedating drugs. Finally I came to the conclusion that I had to change jobs. I am a nurse, and I was working for a neurosurgeon, pretty intense work with very long hours. I was finding that the longer hours I worked, the more nausea I had from the Gleevec. When I just couldn't achieve remission--or actually I did once then lost it for a while. I finally told my doc I needed to change jobs. He hugged me and we both cried. The office shifted me to a position with more regular hours. The fatigue improved, and the nausea from the med lessened. I was able finally to come up to 500 then 600 mg a day. Then finally I got to 0%. I still am a bit unclear what that all means. But I have been able to stay at the 600 mg for the last maybe 3 years I guess. The nausea from the meds, however, has come back from time to time, and the last 3 months it just has been persistent. I know my onc will be reluctant to change anything since it is working. I did have a change in oncologists about halfway through this process. That was as hard as changing jobs! My first doc was involved in the clinical trials and was so knowledgeable. He left to teach. My new doc is ok but certainly not as knowledgeable in my experience. I guess my response to you probably answers Trey's questions, too. Thanks so much again, my fellow fighters! Donna

[GerryL]

Sorry to hijack

Hi jjg,

I think it depends how far along your CML is and perhaps who your doctor is, as to what the starting dose of Glivec/Gleevec is in Australia. I started on 400mg in the beginning of August last year and achieved MMR by late May this year - my level of CML was very low.

Gerry

[mmdojr81]

Hello all,

I have been on gleevec for 6 years now. 400 mg. I have found that the best way to battle the nausea is to eat well, wait 20 minutes and take all 400 mg. I would say that 75% of the time the nausea does not come.

I would like to ask if anyone has had hair loss with gleevec? They are now listing it as one of the side effects when I pick up my meds.

I have experienced hair loss and then regain and then hair loss again for the past 6-12 months.

Thought about changing to sprycel for that reason.

Good luck to all,

Mario

[DA103474]

Hi I just started on Sprycel about 2 days ago I was on Glevec for around 9 years. Did you experience pain in your bone? I had it so bad that they had to give me Oxycodone  for the pain

[hannibellemo]

Do you mean on Gleevec or Sprycel? Many of us experience bone pain on the TKIs. I never did on Gleevec but I do occasionally on Sprycel, especially in my femurs (the long bones of the thighs). It seems to come on later in the day and generally is gone by the next day. It never keeps me from sleeping, it's just there sometimes.

I hope Sprycel treats you better than Gleevec in that department!

Good luck,

Pat

[pamsouth]

Lala,  I missed that part about "Treys advice on taking 4 100mg pill a day."  A few months ago I asked my oncologist "what about taking 4 100mg of Gleevec a day and that would not be as hard on your liver and kidneys, as my kidneys are in a stage 3?"  His reply was;  " 4 pills @ 100mg a day, the 100mg would still have to go thru your liver, all the same"   I just thought it would be better for your liver/kidneys to space them apart so they wouldn't go thru your liver at the same time and maybe you would feel better.  Between the oncologist and nurse shaking their head it wasn't even open for discussion.   Is that what Trey was talking about or about spacing then apart so you wouldn't get sick.  I do wonder if there is a difference regarding the liver and kidney and if one is either the 4 pills or one 4oom mg which would be better on liver/kidneys?

Anyhow I tried Sprycel last week at 50mg and it was a disaster, I didn't even want to give it a chance it was to horrible to go thru that.  Lots worst than when I start on Gleevec at 400mg.  He asked me to try Tasingna or go back to Gleevec, I said I wanted to go back to Gleevec at 300mg as long term side effects of other health issue are troubling me, I do not know if it from Gleevec or a combination of things and Gleevec, but I do know I needed a break to get serious other health issues addressed with their perspective specialist.   Anyhow onc said I could try 300mg for 2 months.  We will see how that goes.  If I go back on 400mg I still want to play the card 4 100mg tab a day.  Don't know how I will get that by him, he didn't like the suggestion?

PamSouth

PamSouth

[ChrisC]

Hi Mario,

I had significant hair loss when I was on Gleevec (varying dosages and TKI vacations for 7 months), then switched to Sprycel 100mg: my hair grew back — on my head, anyway

ChrisC

[Trey]

It is the spacing apart that helps, not the pill type.  Otherwise dosage is dosage, so no wonder the doc said it would not help.

[CallMeLucky]

Pam,  I can tell you that with Sprycel the initial impact can be significant but it passes.  The day to day side effects of Sprycel are not as bad as the first few days.  I know it is hard but if you can push through it, once things settle down it can be better than Gleevec.

[pamsouth]

Yes I have hair loss.  Been on Gleevec since 2005.  I have always had lots and lots of hair, but it has gotten quite thing.  I went to visit my sister and family up north and they remarked my hair had gotten quite thin.  But them my Kidney GFR is at stage 3, I was exstremely low in Vit D2, so am taking a precription at 1 gel pill a month at 50,000 units for Vit D2.  I think for me, hair loss  is a lack of vitimins.  However I tried Spyrcel 50mg last week and it was terrible.  So I went back on Gleevec,  Keeping my hair cut short and hoping the vitimins will help.  That is better than being sick on Sprycel.  thought I was dying.

Pam South