Chronic Myelogenous Leukemia (CML) Support Group

Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

0 Online
0 Online

May be able to stop Sprycel

I saw the doc. today after not taking Sprycel for two weeks. I had taken Sprycel for three weeks and stopped because I was getting a lot of edema and most of the blood counts had dropped below normal. Today the counts had moved back into the normal range and the doc. made a very interesting comment.

He is going to talk with one of his friends at Hopkins for a second opinion, but thinks I may not have to be treated for CML. I couldn't believe it and hope he's right. I've heard of CML patients in a French study being able to stop their meds after ten years of treament, but after three weeks?

I'd be interested in hearing any comments on stopping Sprycel..

Replies

Susan1947
Susan1947

I do not know what kind of doctor your seeing, and I mean this in a very concerned way. CML just does not go away after a short period of treatment. CML is Chronic, and right now the only cure is a bone marrow transplant, thats why we take these TKI drugs. I was diagnosed in 1998, and seen by the best CML Specialists. I have been on Gleevec for 11 years, and have had CML for almost 14. They no longer see the cancer cells in my PCR testing, and I am now PCRU meaning undetected, but I cannot stop my medication or it will get worse again. Are you seeing a CML Specialist? Sprycel is one of the rough TKI drugs for Edema and in some cases Pulmonary Problems. Please do not get your hopes up to high as to what this doctor told you. Please get back to me. I would like to know more about how you were diagnosed etc.
As for patients stopping meds after 10 years, they have had a lot who had to go back on their drug because the remission did not hold. They are doing a lot of research into the possibility of stopping the TKI drug after being PCRU for a long length of time.
chambliss
chambliss

Thanks for your thoughts Susan. My doc. is a hemotologist, but not a CML specialist. However, the Hopkins doc. he's consulting with is a CML specialist and to assure myself, I'll probably see another CML specialist. My dx was through various blood tests, bmb, plus weight loss and night sweats, as well as an ultrasound of my spleen.

My doc.'s idea of stopping treatment at first seemed capricious, but I don't think so since he's quite cautious and conservative.

What problems do you see in not resuming treatment as long as I'm monitored periodically for any changes?
Susan1947
Susan1947

HI: I am reading what you wrote, and I have no other information. By what your saying, you are newly diagnosed with Sprycel as the first choice of treatment for you CML. You did have a BMB to confirm the diagnosis of CML, therefore, it is impossible for you to just stop treatment after 3 weeks. Even if your doctor is a Hematologist, he should not have said that to you. He should have just referred you to a CML Specialst. I am sure this other doctor will maybe switch you to a different TKI drug due to the effect of the Sprycel or lower your dose.Like I said Sprycel is one of the tougher drugs to handle. Did this Hematologist put you on Sprycel, not being a CML Specialist. I assume by what you said that he is not a Oncologist. The smartest thing you said, was to see 2 more doctors who specialize in CML. I saw many before I went into the clincal trial for the Gleevec in New York back in Oct. of 2000.
I hope your not taking offense at anything I am saying. I am just shocked that this doctor would give you false hope like this, but after you see a doctor who can lay it all out for you properly you will see that you can be put on the correct medication and dose.
Apparently you were in the chronic stage at diagnosis. If you were to do watchful waiting with only 3 weeks of treatment you would go into an accelerated phase of the disease without a TKI drug. Please keep in touch with me, because I have been living with this disease for many years. You can private e-mail me anytime.It sounds like you achieved a Hematological Response with everything getting back to normal range. That is only because you were on the Sprycel. As soon as you stop taking your Sprycel, the numbers will become abnormal again. The only time I have seen a doctor do the monitoring of a patient who is not on any treatment, is when they have had a PCR test that reads 0.000 which is called PCRU where there are no cancer cells detected anywhere. I have been PCRU for 9 years, and my doctor still does not want me to come off of my Gleevec yet. When do you see this other doctor?
deleted_user
deleted_user

My oncologist is the top one at Hopkins for CML, and I absolutely agree with Susan.
chambliss
chambliss

jllettmann, thanks for your comment. Would you mind providing the name of your oncologist at Hopkins, I probably need another opinion.
Thanks
deleted_user
deleted_user

Sure! His name is B. Douglas Smith and he's wonderful. Are you local? I would be happy to talk if you need to. I'll be diagnosed a year this October and doing well but I know how difficult this can be.

Jennifer
Susan1947
Susan1947

Hi Chambliss: I hope you got to make an appointment with Dr. Smith who Jennifer recommended. Do not wait to get onto one of the TKI's
Also glad your doing so good Jennifer, and you have almost a year under your belt as they say.
If your on the right TKI whatever it is, you will see some great results as time passes.
chambliss
chambliss

Jennifer,

I just wanted to tell you I made an appt. w/ Dr. Smith for the end of Sept.. I think it's a good idea to get his opinion and I'll let you know how it turns out. In the meantime I'll be seeing my hematologist/oncologist who is getting input from another Hopkins CML Doc.
Thanks again for your help.
deleted_user
deleted_user

Unless your doctor is saying that he thinks you were misdiagnosed then there is no plausible reason to believe you could stop TKI treatment and not have the CML come back. The fact he would suggest such a thing should be a concern. If you do in fact have CML as determined by the presence of the Philadelphia Chromosome in your genetic tests, then you will need to stay on TKI treatment for at minimum a few years, but most likely indefinitely.
If there is a question about your original diagnosis then a second opinion is needed right away. Either way you are best to seek out another opinion from someone more familiar with treating CML.
Best of luck.
chambliss
chambliss

Saw my hematologist/oncologist last friday and all the blood counts were back into the normal range. This is after stopping Sprycel 4 weeks ago. The doc redid the bmb; I think he may suspect a misdiagnosis, I'll find out next friday.

In any event, I'll see Hopkins' CML specialist in two weeks and hopefully that will clarify everything.
Susan1947
Susan1947

If I was misdiagnosed and put on a TKI drug like Sprycel that could have given me pulmonary edema or worse, I can assure you this doctor will be reported, but lets just hope you get the right answers when you see this other doctor.
As for the first doctor I would run as fast as I could to get away from him. Even if its not CML, you do not tell a patient they have Leukemia or any type of cancer until it is truly confirmed.
So glad your going in the right direction now for a definite diagnosis.
Please post to us as soon as you know.
chambliss
chambliss

I saw the Hopkins CML expert a week ago, after having stopped Sprycel two months ago because of edema. During the interim, my blood counts slowly started rising and eventually moved into the abnormal range. Dr. Smith at Hopkins put me back on Sprycel, but lowered the dose to 70mg and also prescribed Allopurinol and Lasix (in case edema becomes a problem again).

I appreciate the comments I received suggesting getting another opinion; it was an excellent idea.
wombat5
wombat5

Its good that you've been able to clear up the ambiguity regarding your diagnosis.
If the edma continues to be an issue for you could switch to Tasigna. It can come with its own set of side effects, but I don't think I've heard edma as a Tasigna side effect.
Susan1947
Susan1947

Hi: The Sprycel is known for the Edema,and in some cases pretty bad. I have always been on Gleevec, and it has been great for me. I do get the Edema in the eyelids, but nothing extreme. I usually have to put icepacks on my eyelids if I am putting on make-up.
The fact is you cannot stop your TKI completely. Hope you do well on the lower dose. Keep us informed. Wish You Well.
deleted_user
deleted_user

Hi susan i was dx in 2001 aged 31 and ive been on hydrox and imititab and now distanib for past 4 years the doctors tell me theyr amazed at how long ive stayed like this..mylast bcrable was 0.0012 and then this time last week was 0.000 undetectable im toldwhich i think you wer told also
x