9 replies to this topic

[FLchef79]

Started with Gleevec, had severe pains all over my body......Dr. had me switch from Gleevec to Sprycel ...........After my 6th day on Sprycel, I began to experience severe pain in my lower back, which is progressively getting worse.  The pain feels like nerve pain and stops me in my tracks!! Has anyone experienced this and if so, do you have any advice for me?  Thanks!!

[Trey]

You need to treat the initial pains and side effects as the body getting used to the TKI drug.  Give it a few weeks and see what remains.  The first few weeks are not very useful in determining what the real side effects will be.  We all needed to work through the first several weeks the best we could, and most of the initial side effects usually diminish significantly or go away.  Then the longer term side effects will become more evident.

[pamsouth]

Flchef,

Trey, Pretty much said what a doctor would tell you. I can remember, I was told the same thing when I started on Gleevec in 2005 (hang in there it will get better) well it is 2012 and I am still on Gleevec.

Sometimes I am amazed at how many start on Gleevec, move to Tasigna and/or Sprycel and end up back on Gleevec, not all, but I see some of the newbies are glad to be back on Gleevec.  From some of the post it seems the side effects are more sever for some on Tasigna and Sprycel then Gleevec . For other they seem to happy on Tasigna and Sprycel as they could not tolerate the Gleevec.  But the claim is you have a faster deeper response on Tas/Spr then Gleevec.  But I guess you won't know that unless you hang in there awhile and if you still can't tolerate the Sprycel, you can try the Tasigna or go back to Gleevec.  I am sure my onc would like me to switch, but as long as I stay in a certain range (FISH/PCR range, which is still postive)  that I have for almost 7 years, I am happy with that, and would rather stay on the Gleevec.  My CBC and liver and kidney counts aren't to bad, Kidney GFR at 59 then goes back up over 60, so it kind of fluctuations a little.  I hear some have much lower kidney GFR even down in the 40's, I do not know if that is from the TKI though.  At least I don't have to have the platelet and red blood transfusions and shots etc. that carry their own set of risk.  Knock on wood,  just saying it has been almost 7 years, and I am stable on Gleevec. But my FISH has run anywhere from 0 to 7% and PCR anywhere from PCRU to 12 %.  Acutally I was PCRU until the lab had changed over to IS, now I am going to a new lab, so I need to get about 3 or 4 labs and see what the range is.  Outside of last year when my pcr went up High, I discovered the lab had changed over and there was some errors and my test were redone.  Come to find others were complaining of the same thing.  Even the doctor said he had new patients that were experience the same of PCRU, then the labs changed over to IS standard and some people PCRU were going up as much as 50%.  As long as my counts stay in the range they have for 7 years that Ok with me but for others well I think most Oncologist would like them at PCRU, the problem is the long term side effects, and the low CBC and kidney liver counts, course they can lower you dose and give you shots, pills and transfusions. But I am still plugging along after almost 7 years.  Doctor has reminded of mutations and losing response, but I have been checked for other mutations and I don't have any, and I have not lost my response it just stays in a range.

PamSouth

PamSouth

[William1403989302]

That's great to hear Pam, 87% of patients are still good at five years.  As long as your quality of life is good, all your doc should be saying is congrats and let's keep monitoring.

[FLchef79]

Thanks Trey. I appreciate your response, makes me feel a bit more at ease.

Pam, I can appreciate your progress, I'm just not sure how this ties into my question...........where is the relevancy? I just don't see it, sorry. Please explain..

Thanks

[pamsouth]

Hey William.

I needed to hear that from somewhere!!  I thought I was losing my mind.

  I can tell yo there is a hugh push from most onc to move patients to the newer patent drugs.

Newer, better, faster, deeper response.  However I already did my induction with Gleevec in 2005 and I don't care to go out adventure to another drug.  I can remember all the noise was "you gotta stay MMR or PCRU or you will lose your response or mutations. " or you will live longer at 3 or 4 log reduction."  However, when I read so many time and time again, at how low a lot of the patients, CBC, Metabolic, labs are, for some of them it is temporally, but some of them stay that way, I think it get worse as you get older because you begin to develop heart and kidney problems.  Well it freaks me out. I mean red blood cells carry oxygen to the brain and all the organs including the kidneys and your blood cells have important duties.  I know there are shots and transfusion but they carry their own risk. I know there are some lucky ones out there who can take low doses and have a good response, a 3 or 4 log reduction.  The BCR/ABL maybe cancer but they not blast they do work.  I do believe the Ancient Long Stem Cell at the top of the chain, that has the original transcript (the trouble maker, that has these daughter and children at the bottom) has probably disturbed some of our other blood.  But I am thinking these blood cells are still working, maybe not perfectly but they are working, You know at 64 year I don't work perfect either. I don't have to kill all the leukemia cells just enough of them, to find the balance. That way maybe my body can help fight other things.   I think it is hard for the body to fight if the bodies immune system is always so low.

Of course I hear the warnings; of mutation and losing response, but the more I read on that, the less I worry about it  I mean even undetectable you can have a million leukemia cells and you can have mutations regardless, of the TKI that was already there.  I think perhaps that as time marching on the more you find out about your self the more you know where to draw the line with the dosage, that is if you can get your onc to go along with it. .  For me it been 7 years I am still at a low CCYR my other counts are still close to normal, slightly low here and there.  I don't have PE, I don't have a rashI don't have to have transfusion or take iron pills, or shots.  I still have a little bit of a moon face, not bad, I think that will be permanent.  I do have to space myself, a little, but I think some of that is due to my age of 64 + CML + TKI and some muscular skeleton bone issues.  I will soon be finishing up physical therapy and will be going back to My Oasis, a ladies water aqua and the Zumba, lots of fun. So at least I am not sitting in the rocking chair all day.  In fact we are doing a lot of cleaning, guest coming from out of state, to celebrate my husband niece graduation.  So we have painted 3 rooms, washed window and blinds. Bedding and linens are cleaned.  Working on cleaning the porches and steam hard wood floors, Grocery to get yet and party balloons.

I did call my new CML onc office manager yesterday and he did return my call.  I had went for a consultation back in Nov, at a leading cancer center in Indiana.  I was very happy with consultation, but since then it seemed the game plan was changing, and I was banging my head against the wall.  Anyhow the office manager was kind, I didn't feel like talking anymore about it, I was crying a bit, as I thought I was going to have a working relationship with the staff, and was banging my head against the wall.  Anyhow the previous anc nurse as left but he is going to call her, and the present onc nurse and I did not hit off and she doesn't like returning my phone calls and the office manger is going to call her. I think since this is a school of medicine some of them are students and have not learned their manners, but I expect they very soon will.   I said the onc and I had a game plan but this seems to be what is happening, and these are more problems a. b. c. d. e. f....  I told him I think the relationship had gone sour and I didn't think I was going to go back.  I told him I didn't appreciate the doctor,  giving me one refill of gleevec and the nurse telling me this was a warning from the doctor, and I need to think about Tasigna, and mutations.  I am right where I am suppose to be according to the original plan.  I told the office manager of the oncologist group, this was my understanding, at the consultation, and this is what is happening and it is to stressful for me, that I would not be going back.  I also told the office manager I got a letter from Novartis they are not giving out any more co-pay assistance of Gleevec.  I also read there are some lawsuit in I think Asia Novartis trying to get an extended 20 year patent.  Something about Novartis had slightly altered the Gleevec. Anyhow it gotten thrown out of Court.  I think Novartis is going thru a third appeal.  I can't remember the detail, or if I got the right,  was complicated.  But anyhow I am quite sure as Gleevec gets closer to becoming Generic that Novartis and it stockholder and salepeople are getting very nervous, that is a lot of money to lose.  I don't think our problem is with Novartis I think a lot of our problem is with our politicians and our health care system.  It is terrible what I have to go thru to get Blue Cross Uaw Retiree to pay Onc.  every three month, it is like a part time job.  I can only imagine if I changed drugs how many trips to the doctor and test , etc and trying to get Blue Cross to Pay, it is so stressful.  Thank God I will be 65 in Jan Medicare age.  My husband is on Medicare and secondary Blue Cross and we don't have all these problems.

Oh look at me I am just rambling at my own story.  Every body is different and has their own story.  Their TKI and bodies and life style are different then mine.  Although I must say even though their situation is different I pick up a little something useful to me from each story.

Thank again William,  I like you graduation hat and gown, did you just gradate from somewhere or are you a professor or what. 

Tell me about yourself?

PamSouth

[FLchef79]

I actually had some notion that this discussion forum was supposed to be of help. Perhaps I've posted my ORIGINAL question/discussion in the wrong place.

[GerryL]

You'll find your discussion threads get hijacked occassionally happened to all of us - hopefully some of the guys/gals on Sprycel can give you an answer.

[kellbell]

Hi, I am also taking sprycel. I started taking it 5 months ago when I was diagnosed.  I have a lot of pain in my upper back, mostly neck and shoulders. Sometimes I get a little nerve pain in my arms. It comes and goes and I do notice it feels better if I exercise. I think it has something to do with posture and muscle weakness. I feel like my muscles get weak again in 1 - 2 days of not execising and the pain is back. I also wonder about tension and anxiety also because I notice when I'm tense thats when its hurts also. I take too much Ibuprofen and am getting tired of it because sometimes I am too busy or tired too exercise. I was just thinking of complaining to my Dr. and maybe go to physical therapy or take prescription pain med. I hope you resolve your problem if you do I could also use some advice.