39 replies to this topic

[Trey]

Gleevec, Tasigna, and Sprycel are all TKI drugs, which are used to treat the CML.  The additional information you provided is pretty much a re-statement of what you provided earlier.  Trisomy 8 can be found in some forms of MDS, but it is not that rare for CML patients taking TKI drugs, so it does not indicate MDS for us.  Often the Trisomy 8 disappears as the CML treatment progresses.  So the MDS diagnosis could be incorrect. 

Your local Onc there in Idaho is probably not qualified to treat your specific case of CML.  You need a true CML specialist, and there are very few of those (none in Idaho). 

[sarah1403989277]

thank you for clearing that up! yepper im thinking hutch would be the best

[Trey]

I would not go to Hutch unless I wanted a transplant.  That is what they do best.  I would go to someone who treats CML.  In your other posting about where to go for a second opinion, almost all of the responses came from transplant patients who did not have CML.  They would not be my preferred source for information about treating CML.  If you go there, you will end up with a transplant.

http://community.lls.org/thread/13034

[sarah1403989277]

thank you i am glad u let me know i dont know if a transplant will help or not so maybe i should go to knight cancer at ohsu in portland

[sarah1403989277]

everyone tells me to ask u so u r thinking i shouldnt go to the hutch yet!!

[idahobeavers]

hey guys i go to ohsu on feb 23rd. for a consult. i cant hardly wait. hooray for me

[reedgirl]

Sarah,

  My husband was also diagnosed with a complicated case of cml. To begin with he had some cells with only 44 chromosomes and some with only 45.  Without boring you technical things which I myself still am trying to learn and understand, I will say his translocation of 9:22 was not simple.  He had translocations involving chromosome 4 and 9, translocation between 9 and 22 and an unknown origin, translocation with 4 and 20, and another translocation with 9 and 22.  His Bone Marrow Biopsy report was 5 pages long.  The Karyotype for Greg was 6 lines long.  At the advice of Trey, we contacted Dr Talpaz at the University of Michigan which was 5 hrs away. I faxed Greg's biopsy report on a Monday, that evening I received a personal email from Dr Talpaz requesting me to call him.  I called the number he gave the next day, he answered the phone.  The first thing he said to me was, "Your husband has a rare case of CML, one I have never seen before.  He will greatly benefit from my expertise".  We had an appointment the following week to see him.  That was Sept of 2010, every 3 months we travel to U of M.  I have no idea where we'd be if it weren't for Trey's advice in seeking a specialist.  Greg was on Gleevec, Tasigna, and now Sprycel, will be 1 year in March for this drug.  He still has not reached PCRU, but hopefully we are on the way toward that goal.  I did not wait for our local blood cancer doctor to figure out how to treat him, I also did not wait for our local cancer dr to recommend a specialist. I took matters in my own hands and made the calls myself.

   I would strongly suggest you do the same.  Make some calls Monday morning.  Send faxes or emails of your BMB reports to a specialist and get another opinion.  I believe that is what has kept my husband from a transplant.  I asked Dr Talpaz if he had ever seen a BMB report like my husbands, in his exact words, "No. Never, and I have treated a lot of patients."

 

Good luck with your journey.  There are many people on here who can offer support to you and would love to follow you on your journey.  Keep us posted in what you choose to do, what doctor you choose to see, and how your progress is.

Audrey

[Judy2]

Hi Audrey,

It is wonderful to hear that your husband is doing well, even with his complicated case of CML. Audrey, I am curious, what dose of Sprycel is your husband on, what was his PCR when he started Sprycel, which scale is it, international or, I guess you would say standard,and what is his PCR level now? I just started Sprycel 50mg five weeks ago, I will have my PCR results in about 2 weeks and I am anxious about it as I have also been on Gleevec and Tasigna. Thanks in advance.

Judy

[reedgirl]

Hi Judy2,

  Greg's PCR in Jan 2011 was .327% which was great because in Nov 2010 it was 18.226%.  He was off medication longer than he was on after his diagnosis in July 2010.  By Jan he was taking Tasigna on an irregular basis due to very high liver counts.  It was decided in Jan he was to go off Tasigna due to drug intolerance and stay off until end of March 2011 when he began 50 mg of Sprycel. One month after he began Sprycel he had another PCR test, results were 3.049% but they expected an increase because of him being off medication so long.  At that time they increased his dosage to 70 mg.  In July his PCR was .108%, showing great response to the drug.  His next PCR wasn't until end of Dec because the lab at U of M forgot to do the test, so they sent a specimen kit to us for our local lab to enclose a blood draw, then overnight back to U of M lab for the test.  That PCR came back at .135%.  Overall I think he is having a good result.  It's not exactly where I'd like to see it after almost a year on Sprycel, I was actually hoping for PCRU by now. We go back to Michigan beginning of May.  I plan to discuss with Dr Talpaz my concerns about his levels.  I hate to complain because he is doing well, I think I'd just feel better if there were more 0's in that result.

  You asked what scale it was, honestly I do not know. I never asked them.

  I'll be looking forward to hearing about your results, I hope you have a great response to Sprycel.  What was your PCR when you started? Do you have any side effects, aside from the skin issues?  Greg ignores all signs, side effects, or pretty much any "problems" to his body and health.  When he mentions any problems, I know they are bad because he refuses to ever say he feels bad or is sick.  He works at a minimum 10 hours a day, some days are 12 hours, five days a week. Saturday's he works 5 hours a day.  Some Sat's he comes home and crashes, the last two Sundays he hasn't been able to get out of bed.  He actually said to me last Sunday, "I don't know what's the matter with me, why can't I get out of bed".  I looked at him and said, "Um, where do you want me to start".  I had to explain to him how lucky he is he can put in the days he does and that if he crashes one day a week its because his body needs to.  I know its good for him to be occupied and live a normal life, I just worry he is overdoing it and ignoring any warning signs.

Take care Judy, can't wait to hear about your results!

Audrey

[Judy2]

Hi Audrey,

Thank goodness Greg is doing well, he has had quite a journey. The fatigue issue is lousy, I know first hand, but at least side effects are not preventing Greg from staying on Sprycel. I am  hoping Greg gets to PCRU but I have heard people say on this board that MMR is the important finding, not so much PCRU as it is thought even if we reach PCRU we still have some undetected leukemic cells and the PCR result may vary from lab to lab. At one lab someone may come up PCRU at another lab they may be MMR. At least that is how I understand it.

I was dx in May with a PCR of 44.3% by my BMB and 41.6% by blood. I then went on Gleevec 200mg, a lower dose due to kidney problems, and by Sept. my PCR was 71.8%. My PCR in Oct. was 54.7%, in Nov. it was 55.9%. At that time I went up to 300mg Gleevec but could not tolerate the side effects so I switched to Tasigna. Unfortunately, I could not tolerate the side effects of Tasigna either. I went back on 200mg Gleevec to get my WBC down again until I could procure Sprycel. In Dec. my PCR was 42.7% and after one week on Sprycel 50mg in Jan my PCR was 34.5%. All results are, I guess you would call it on the standard scale, not the international scale. My side effects from Srycel have been, rash with welts (prednisone is taking care of that), muscle pain (not horrible after I got by the first 3 weeks), fatigue, and a liitle worsening of an exsisting condition (angioedema) Allegra is helping with that. All in all not bad. I also developed Shingles, not sure if Sprycel played a part in that or not. I'm just hoping the 50mg works as I'm not sure how I would tolerate a higher dose. I switched oncs in Dec, love my  new onc, and he says if my PCR result does not steadily decrease I will have to increase my dose. I had my blood work done yesterday and will get the results in about 2 weeks. BTW, Scuba, enhances his Sprycel with Curcumin. Anyway, Audrey, I'm so happy Greg is  doing well, despite the fatigue issue. I hope my results will be as good as his.

Judy

[idahobeavers]

ok i am on 100 sprycel my last cbc showed no improvement

wbc

2.9

rbc 3.23 hgb 12.5 plat 70  neut% 30.8

bma trisomy 8 and translocation between 9q and 22q are consistent with cml nd mds,

interpertation cytogenic analysis shows presence of two abnormal cell clones the first clone contains a extra copy of chromosone 8 trisomy 8 in 12 of 20 cells examined.the second clone shows what appears to be a three way translocation between 9,22,and 15 in 8 of 20 cells examined resulting in philadelphia chromosone rearrangement

i am going to ohsu on thurs feb 23rd to see a specialist

does any of this make sense to you ?

i am fighting extreme fatigue,being cold and diarreaha and stomach pains also mild itching.

[Pin]

Hi Sarah, Did they give you a PCR or a FISH test? Those CBC numbers don't look so bad to me (low-ish platelets and neutrophils), but it is hard to tell unless they have done a PCR or a FISH test?

[idahobeavers]

fish

[idahobeavers]

if u can go up to early talks with trey and i i posted my reports there  they are under sarah beavers. i couldnt get on so i set up another acount

[Trey]

The CBC is good for having just started Sprycel after having taken Gleevec and Tasigna previously.  Otherwise, it is good that you have an appointment at OHSU to sort out your CML issues with the unusual Philadelphia Chromosome 3-way translocation.  I have previously expressed my doubts that you have MDS, just Trisomy 8 along with the CML which is not that unusual; but the Onc can sort that out for you.   Hope all goes well with your appointment.

[idahobeavers]

sure hope u r right ! thanks trey

[sarah1403989277]

ok went to see a cml specialist at ohsu she agrees i have cml+ph and mild form of mds. she wants a bmt every 3-6 ,mos and if my counts drop then she wants to do bmt. ok thats scary sure hope i dont have to have one.i hope the sprycel kicks this stuff. i done want the bmt. but if needed so be it

[Trey]

The doc you saw at OHSU (Dr Holtan) was not a specialist in CML.  Not a specialist at all -- just another newby Onc.  But anyway, either the drugs work or they don't, and if they don't, then BMT becomes necessary.  Your local doc can do the BMTs and testing.

[sarah1403989277]

right on!! i am hoping they work i dont like the idea of a bmt

[idahobeavers]

just a short update here. now i have also seen dr maurio (spelling?) at ohsu. he also says i have mds. and he wants to keep a close eye on the mds ,with blood and marrow tests. they are saying its a mild fgorm right now. but if there are any changes i go in for a bmt.