3 replies to this topic

[thewife]

DH was diagnosed just this past Tuesday with CML.  Took him to E.R. last Sat. for extreme left arm pain and increased blood pressure.  Everything cardiac checked out but his WBC was 143,000.  Hematologist came right in to see him.  Looked at the smear and said there were  a lot of "ugly" cells on the smear.  When asked what that meant she said "blasts" which are immature white cells that shouldn't be there.  So we were transferred to West Penn in Pittsburgh.  She thought they would clean the WBC out of his blood through some procedure but they didn't.  Did lots of blood tests and a bone marrow biopsy.  He does indeed have the CML with the Philadelphia Chromosone  .  This is all so new to me and I am trying to understand as q uickly as possible.  He was on hydroxyurea and allpurinole in hospital and sent home with a script for Gleevac which he started today.  He is still very short of breath He also has a very bad foot and ankle that was to be fused on April 1, but now we are told to put that off for about 3 months minimum.  Blood test on Monday and then every MOnday for four weeks,

Watching this board to see what to possibly expect and know that I think all of you who fight this thing are heros and so brave!!! I love you all already!

 

[scuba]

His bone marrow test results will be very important at this stage. You will have 3 main test results to identify and then report here if you would like comments. The tests are:

 

1. FISH test (which is likely to be 100% - 20 out of 20 cells positive for Ph+ chromosome indicating CML)

2. PCR test (likely to be 100% or even greater)

3. Cytogenetics - what percentage of each blood cell type is in his bone marrow and their chromosomes - most important here is blast cell percentage.

This will stage him in terms whether he is chronic phase, accelerated phase or even blast phase. It doesn't seem that he is in blast phase given how the doctor responded.

 

A CBC test will have also been done showing his blood makeup (percentages and counts of red blood, platelets, white blood cells and related. Feel free to post those here as well.

 

Trey will most likely post his starting recommendations; do read his blog which contains some very useful starting information for the new patient:

 

http://treyscml.blogspot.com/

 

Another good read is the NCCN guidelines which describes what your doctor should be doing to treat your husband. But you should know that these are just "guidelines". Your husband's eventual treatment should be customized depending on how he responds. As you read this forum you'll discover that many doctors don't know what they are doing. One size does not fit all and you need to be vigilant as your husband's care progresses. 

 

http://www.nccn.org/...uidelines/cml/#

 

One final thought which is my opinion - your husband is very likely going to be just fine. Assuming his blasts are not out of control, he will respond to treatment quickly and his CML will be brought into remission. The treatments today give over a 95% progression free survival at 5 years. This disease which was fatal in 3-5 years 20 years ago has been rendered chronic at worst and functionally cured at best. Let us know the data and you'll get very good insight to what's happening. 

[tiredblood]

Welcome to the discussion board. I wish your DH well with his CML journey.  When I was first diagnosed, the NCCN patient guidelines that Scuba provided a link for was one of my favorite resources in helping me understand CML.  I'm still in the process of reading Trey's blog. He has done a wonderful job of sharing all of his research on the subject.

[roamingdoc83]

First thing my oncologist said to me some 7 years ago, "You aren't going to die"... TKI's extend NEAR normalcy (aside from costs and what can be tough side effects) to sufferers of CML.

 

Within a month or two of starting Gleevec or TKI your husband's blood will most probably be near normal. I get blood tests each month now (for other reasons) and NO ONE knowns or can tell I have CML from the standard WBC data. I look perfectly normal.

 

Exercise, as mentioned, is very helpful. I do not get tired as some seem to; My side effects are 'nausea' so I take the gleevec at night and headaches - some skin eruptions ... BUT Gleevec destroyed my testosterone production and SOME doctors still contest, so hormones might be (might) an issue to watch. Once discovered, I am nearing normal again (had gained 30 #s while dieting until discovered!). I do have bone aches, another possible side effect. BE careful not to ascribe EVERY strange thing to Gleevec, seems to warp people's outlook and bring on real depressions (for example, my aches 'can' also be attributed to injury induced arthritis so I don't completely blame the meds). As far as sleep is concerned, try to get that 7 hours nightly, body (all bodies, not just CML) need it.

 

While most won't, I decided (due financials) to (after these nearly 7 years) take the meds "one month on, one month off" and monitor. As Medicare does not cover the BCR tests, I do standards and have not noticed any change. YES, Trey and others will say, "Have the BCR..." and that is one of the best but Out of Pocket is approx $1K... so cannot. But you will monitor. I was MMR very quickly way back when I was draining the bank to pay and so right now, well I am just doing what I did then except every other month. There is another digital genetic test (BCR as well) that gives a very exacting read on 'how well' one is doing - being used for people GETTING off meds, so remember, some people are being 'healed' and going off TKIs, this test is not common yet)

 

From a perspective of 'average' issues, responses, your husband will recover, approach normalcy and live out his expected span of life. The TKIs are a miracle and, while a very small percentage of people do not respond, the average is remarkable in quality of life and length... make sure you have some 'fun', relax if possible (working all the time is not fun), be sure to try to live normally. CML is a bad illness but we now have an amazing medication that allows us to move on and remain productive. God's Blessings upon you and your husband!