All Turned Cml...

My husband was diagnosed with ALL at 35 (see previous posts from last year "ALL Side effects in Adults") and I have not posted in a long time.

He went through ALL treatment for 2 years and finished in Nov 05. Ever since his treatment was over, his white's have been slightly elevated. The Dr. wanted to wait for a few months to see if they came down..she thought it could be an accumlative effect from the prednison etc.

Last week she decided to do some extensive blood work...the results came back with the marker of CML (aka the Philidelphia chromosome). He has had CML the ENTIRE time and we had no idea. God only knows how this went undetected for 3 years of biopsies etc.

The ALL was actually a secondary off shoot of the CML know as a 'blast'. So, here we go again. We are scheduling consults with Dr's at MD Anderson in Texas as well as Fred Hutchinson in Seattle. He was just put on Gleevec, so we will wait to see how that works. From my research, the only true cure is a BMT...any feedback from anyone would be greatly appreciated. We are terrified, but in war-business mode this time.

Beth

Usually I would think of Chronic transforming into acute, not the other way around. Perhaps you are saying this was misdiagnosed. At any rate, CML can be cured in up to 70 percent of patients who undergo Bone Marrow Transplantation (BMT). Upon establishing a diagnosis, if the patient is deemed to be a candidate for BMT, a search for a donor must be initiated. If an identical twin or a matching sibling is available, a BMT should be considered.
For patients who do not have a sibling donor, a search for an unrelated donor must be initiated. Transplants for CML patients using an unrelated donor are best performed at the initiation of the accelerated phase. Preparation for BMT takes a few months. Meanwhile patients are treated with medications to control the illness.

Hi there:

Thanks for getting back to me. I think it would be safe to say that he was misdiagnosed. time will tell as we meet with othwe Dr.s. I believe what origianlly presented as ALL, was actually the accute phase of CML;a blast phase.

When you say a BMT should be done at the accelerated phase, is that the same as a 'blast' or accute phase?

We have so much to learn about CML, Gleevec and BMT's. It is scarry to only count on Gleevec when it is so new...and a BMT is flat at terrifying...I guess that is what we will find out when we meet with the specialists.
Beth

cml starts with a chronic phase but moves into an accelerated phase and then a blast crisis. The accelerated phase is when the CML is becoming progressive and Gleevec doesnt work as well. Thats when a BMT should be considered. He could be controlled with Gleevec in the chronic phase for years. BMT can have some problems, but it is the only cure. Does he have any siblings? They make good donors. Hang in there and dont give up. He CAN be cured.

He does have 3 siblings, and they have all done the HLA testing about 2 years ago, in the event..they were not 100% matches, but we will have the specialists re-review those results.
Have you had a BMT? Or have you been on Gleevec?
Beth

No to both your questions. I work in Oncology as a Pharmacist.

Hi Beth,

You might remember that we talked before under the post Darren created... I'm the one that was diagnosed last July when my younger daughter was 1.5 months.

It came as a shock as I checked my mail today about the shocking news. Well, I got the feeling though that your husband might have a relapsed Philadelphia positive ALL, not CML. The reasone for that was: I was diagnosed with ALL, Ph negative at the beginning, went through chemo and stay in remission. But when I went to Hutchingson for a transplant consultation, a test called PCR was recommended to make sure I'm on the safe side, I was found Ph+ by the test performed on my original marrow. This type of test (PCR, FISH) looks for bcr-abl fusion genes that characterises Ph+ (normally flow cytometry does the work of finding Ph+, but some patients don't show signs of Ph+ while have bcr-abl).

So, long story short, I was put on Gleevec and went through a sibling donor BMT this March, my transplant doctor is happy with me so far.
I would suggest the following:
1. make appointment with Hutch as soon as you can, they are booked up very quickly (I was there for consultation), they might have more suggestions before you hurry into any conclusions;
2. have his onc dig into his original marrow sample (those usually are kept for a long time), and check by either FISH or PCR to see if it had any bcr-abl fusion gene;
3. have a new bone marrow biopsy, do the test again, to find out what type of fusion gene that is (ALL and CML both have bcr-abl fusion genes, but the fusion occurs at different segments, so the two can be distinguished);
4. based on the new findings, decide if it's a relapse or it's CML, for sure start Gleevec at no time;
5. start search in the National Bone Marrow Registration at once, for that, I think you probably need to hook up with a transplant center, and get the approval from insurance company, so that can start ASAP. Normally the search can take 5 to 6 months. The girl who had BMT when I had mine was lucky to have a match found within 2 weeks. So there's always hope.

Stay calm, you fought it before and you will make it this time too. I'll keep you in my thought as always. If you have anything that I can of help, please email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----.

-- fight-all

Dear Fight-All...if I recall was your name Angie?

First of all THANK YOU soo much for taking the time to share all of that info...we really need to see a specialist. MD Anderson just requested Andy's previous bone marrow biop's, CBC, Dr. notes etc. After they review them we will schedule a visit to Texas for 3-5 days for tests, biops etc....THEN, we will do the same for Hutch for more opinions.

Why did you decided to have the BMT if you were in remission? Because they found the Ph. chromosome? What did you think of Hutch's?

Did you have to move to Seattle for several months etc? If you did...WHAT DID YOU DO WITH YOUR BABIES? I try to to worry about all the "what if's" but I am a planner and need to know what we are possibly looking at, so I can stay strong...Our daughter just turned 3 and we cannot be apart from her for months on end...I guess we just rent an apartment and bring our babysitter etc...just curious how you dealt with that...


I would have emailed you on your personal email or call you so we can chat, but I think it was edited by the staff of this website...Youre not in California by chance are you?

THANK YOU SO MUCH AGAIN for your support and info..

Beth

In the transplant forum of leukemia society's BBS, there's a discussion going on about how to choose a transplant center. It might be helpful to you. Just go to google, search for "leukemia bbs", the first or the second would lead you to the BBS, choose the "Bone Marrow and Stem Cell transplant", you can find a lot of info on leukemia patients going through transplant, I highly recommend this forum. If you wanna contact me, when you are there, search for "fightALL", click on any post found under my username, then click on the profile of mine, you'll find my email.

I didn't have mine at Hutch, although I speak highly of the place, they are the one who suggested the additional test that might have saved me in the first place. I did the bmt just because the Ph+ (said it's a very poor prognosis due to this), I was against bmt before that discovery. My bmt was done at the local hospital in Wisconsin, so that I didn't have to be apart from my kids too long, and I feel happy that I could stay home to recover.

MD Anderson is also a great place, especially for CMLs (my impression only), so Andy is in good hands (for sure, he's started Gleevec?). Hold strong, Beth, he needs you at this very moment. You are in my thoughts. Good luck,

-- fightall

Dear Beth,
I am so sorry for what you have to go through, but I truly know how you feel. I have an 11 yr. old daughter w/CML and it has been a year now since her diagnosis. She has been on Gleevec for the past year and is now in somewhat of a remission. She has been through alot this past year, but she is definitely a trooper. I can't believe how she is handling this, we are in a better place than a year ago. My daughter had repeatedly been misdiagnosed and was even told that her pain may be psychological. Some docs just don't get it and can be so cruel and unefficient. I took my daughter to the doctor for 7 months and she saw several. I finally had enough and changed hospitals, she was diagnosed in 3 hours. Her white count was 708,000 and she was very ill, what is worse, we were just at her docs a week prior to changing hospitals. Due to the time that it took for her diagnosis the high white count destroyed her hearing in her right ear and caused her eyes to get worse. The day, (Sept 6, 2005), is a day that I thought the world had ended. Yet, a year later, we have hope. Her blood counts are normal, she has been ok on the Gleevec, and the docs found 4 matches. If her #'s start to go up, she will then have to through a BMT. The risks are very scary, esp since I do not have any other children so she has an unrelated donor. I will pray for you and your husband, just have hope and faith. Gleevec has done wonders for my daughter and hope that your husband also benefits.
Cindy