27 replies to this topic

[Pattyod]

Hello everyone,

Thank you so much for your responses, the information I get from all of you who are actually dealing with this illness and the medications and side effects is priceless.  It has given me the inspiration to research even further and I have spoken with my daughter and told her about all your responses and information.  She is going to come over on Sunday ( we are going to look at a wedding venue as she just became engaged on valentines day) and read all your emails.  We are seriously discussing getting a second opinion and even the possibility of changing doctors.  She had received a call from the pharmacist about her change to Tasigna and found the pharmacist surprised that my daughters doctor had not told her about her need for a EKG and to have her eloctrolytes checked.  We discussed her last appointment and both of us remember her doctor saying he had never seen the issues she is having so now we are really wondering how many CML patients he has and what his experience with this illness is.....trust me a question I am going to ask on our next appt 3/12.  I also am going to ask him to clarify a comment he made that after we left we discussed had confused us both and that was the result of her bone marrow biopsy show the Sprycel was not attacking the CML cells, yet her numbers were decent then but continued to drop, it is very confusing as I guess is should be when one is just beginning to deal with this.  That's why I so appreciate this site and all of you, it gives me not only more information but more hope and also the inspiration to push the envelope and not settle for what the doctor says but to push for answers and ask the important questions and to know that if  changes have to be made, you make them.

Thank you again, I hope  you are all doing well and feeling well and that today and everyday is a good one for you.  Please keep in touch.

Patty

[Trey]

I don't see the rationale for switching to Tasigna instead of lowering the Sprycel dosage.  The Onc is not allowing enough time to adjust to the Sprycel, which can take time.  Is the Onc going to have her take full prescription Tasigna?  The result could easily be the same low blood counts.  Some people just need less drug than others.

Also, she should get copies of every lab test result, and we can help her understand them. 

[hannibellemo]

Hi, Patty,

I've been on Gleevec for 9 months (liver toxicity) and Sprycel for 2 1/2 years. In my opinion you are wise to be thinking of another physician. That is not to say that the doctor your daughter has now is not a good one, but he does not sound like he has much experience with or knowledge of CML and the TKI drugs used to treat it. Most doctors don't, this is a relatively rare leukemia.

It is helpful to remember that low counts are generally just a side effect of the drug. It doesn't indicate one way or another if the drug is actually doing it's job. That is information you get from the results of PCR or FISH tests. For most of us that doesn't happen over night so we have to find physicians who are comfortable managing the side effects while giving the drug time to do its job. I don't think your daughter has found that physician yet. If you read some of the other posts from new members you can see that some of them, whether they know it or not, are dealing with the same thing.

What your daughter is experiencing is very common to most of us. I did not have real low counts on Sprycel for some reason, but I did with Gleevec so I know what she is going through. It took 3 years, but my counts are all in the normal range now. The difference is that I have a doctor with lots of experience with CML patients and he didn't panic when these things happened but allowed the drugs the time they needed to do their job and managed the side effects, for me, with short term cessation.

It sounds like you have a handle on the issues and will be a great advocate for your daughter!

Good luck!

Pat

[jjg]

Hi Patty,

Congratulations to  your daughter on her engagement, and congrats to you too. My husband & I were engaged a month after dx and I think you know for sure that he's a keeper when he chooses to marry into CML.

My doc is experienced with CML but isn't a CML expert. She openly sources advice from experts and I'm seeing one of these next week -  he will act as a consultant on my case. So if I was you I wouldn't be at all shy about getting a second opinion from an expert even if you only see that expert a couple of times. Quite a few people on this board travel long distances to see an expert as required  but then go back to their local onc for regular care. Of course this all requires that the local onc doesn't have an over sized ego.

Enjoy wedding planning!

Josie

[Pattyod]

Good morning everyone,

I hope your weekends went well and everyone is doing ok.  I spent some time this weekend with Jordyn and she read over all your emails and was so appreciative of the advice and information.  We had a talk and have decided to seek a second opinion/or new doctor to work with her dealing with her CML.  She has been discouraged with the fact that her present doctor is intent on changing her medications so quickly without really giving Sprycel a chance.  She was on it for only a month and then off and then a week and a half and he is done with it.  We have contacted the Smilow Cancer Center at Yale New Haven Hospital, which is the biggest hospital I think in Connecticut and are waiting for a call back so she can arrange to meet with the doctor they feel has the best experience with CML.  We are keeping our fingers crossed !  We are also considering traveling to NY or Boston where I think I may have found a couple of CML specialist and seeing if we can find a CML specialist to consult with a doctor here in CT.  Also we talked about our conversations we've had during appointments with her present doctor and some of the comments he's made do not match things we've read or things you guys have advised.  We are starting to think Call Me Lucky is right and he is winging it.  I think he is a very good doctor and great manner but we now are starting to think his experience with CML is limited.  We see him next Monday and are going to tell him she does not yet want to start the Tasigna and that we first would like a second opinion.  Its a awkward thing to do but I feel her health and treatment come first and we need the best possible person to work with her.

I hope everyone had a good day/week ahead.

Patty

[CallMeLucky]

I live in CT and I travel to NYC to Memorial Sloan Kettering.  They have a few CML specialists there, including Dr. Berman who I see.  She is conservative but she knows her stuff.  She's been working with CML for 30 years and she is a co-author for the NCCN guidelines for treating CML.  I know some others on this board who also see Dr. Berman and would recommend her or any of the doctors at MSKCC.  I initially saw her for a second opinion and then decided to be transfer to MSKCC for treatment, but she was willing to consult if I wanted to stay with my original doctor.  At first it was a pain to go to Sloan but once things settle down it's not a big deal to head into the city once every three months.

You should not feel uncomfortable about asking for another opinion.  This is a rare disease and many doctors do not have that much experience with it if they are not working at a major cancer center.  Your doctor should not have a problem with this - my original onc told me I was going to go for a second opinion before I even got a chance to ask.  If your onc does have a problem with it, then that is just another red flag that maybe this isn't the right doctor.  It would be bad enough if he doesn't have enough experience but to have too much of an ego to recognize it, would be dangerous.  Remember it is your daughter's life, not his....

Best of luck.

[sharingg]

My close relative was diagnosed with CML in July 2012. She was prescribed Gleevec and had her blood tests done every week. After few weeks she was told she had excellent results and blood test was not needed for another month (until September). During this month, she started experiencing various symptoms such as swollen nodes, fever, etc. She also suspects that she caught cold/infection from air conditioning which made things a lot worse. She told doctor about these symptoms but doctor said that despite these symptoms she did not need to have another blood test until September (as agreed previously). She went for a blood test two days ago and was told that her CML has progressed to blast phase, but the doctors said it would hopefully be possible to go back to chronic phase after having other treatment (Chemo) additional to Gleevec. We are very desperate and I would be extremely grateful if anyone who has had similar experience or knows anyone with similar experience could share information with us about treatment/prognosis in a similar situation. We suspect that blast has only started a few days ago so we are desperately hoping that this can go back to chronic phase with a view of further treatment to fight to achieve remission. PLEASE HELP. Thank you very very much. Sharingg   

[Trey]

sharingg,

You posted this twice.  See responses here:

http://community.lls.org/thread/6785