Newly Dxd w/ CMML

[Lori C]

My husband has been dxd with essential thrombocythemia for the last four years. It is a myeloproliferative disorder. Yesterday, we saw his dr. and the dx has changed to CMML. He is still in the indolent phase so his counts are still pretty good. Treatment right now is watch and wait. The dr. will do a double bone marrow biopsy in late April or May to determine disease progression. Prognosis given was 24-60 months. I’m just looking for more information about CMML. While my husband had ET, he was on Hydrea for a while and then later interferon, Pegasys to be exact. The dr. has taken him off the INF and my husband can no longer take hydrea due to toxic side effects that he experienced. Platelet counts are falling for the first time in four years w/o meds, although still within normal range. If someone can let us know what to expect, that would be great. My husband is 38, he’ll be 39 in May, and is in good health other than the CMML. His dr. has been very helpful to us over the last four years and told us not to get hung up on statistics. He has a 74 yr old patient w/ CMML who has had it for 15 years and has just now gone into blast transformation. So, I’m trying to think positive, but I’m sad too. Thanks in advance for any info regarding CMML.

[jaxem]

lori
don’t know that much about cmml but it’s usually a disease in patients over 60 and shows many blood issues such as blasts and displastic cells. If you haven’t already done it, I would definitely get a second, perhaps 3rd, opinion of his disease. Texas is a big state but I’d try to get to MD Anderson for an opinion. if it’s confirmed by multiple sources, stem cell transplant should be considered especially since he’s so young. good luck with your research. Maybe someone who knows a lot more than me will pop up & give their recommendation.

[Lori C]

Jack,

Thanks for your reply. We have been to MD Anderson before to confirm dx when Grant had ET. We plan to return to see the MDS specialist there after Grant has had the double bone marrow biopsy. I have ordered four textbooks on MDS and am eagerly awaiting their arrival. I became well educated on the ET so I hope to become as well educated on the CMML. Best wishes to you and your wife.

[jaxem]

lori
smart thing about becoming as well educated as possible. it never hurts. what is a “double” bmb? thanks for asking about my wife.

[Lori C]

Jack,

A double bmb is where they do a biopsy out of both hips. The reason Grant’s dr. is doing this is because Grant has had a paratrabecular lymphoid tumor show up in one hip and the dr. wants to compare biopsies from both hips to try to determine more about this tumor. He will also chart disease progression for the CMML. A paratrabecular lymphoid tumor is not good and can sometimes indicate lymphoma, although it is rare for it to originate in the bone marrow (less than .5%). We are hoping that it is not an indication of lymphoma on top of the CMML, but I plan to not borrow trouble unless trouble comes aknocking. If you don’t mind my asking, how was your wife dxd? Take care.

[jaxem]

hi, lori
my wife had a breast lumpectomy in 2000 after which she received adriamycin & radiation as a prophylactic treatment. she had returned to the cancer center semi-annually for check-ups & cbc blood test. her rbc’s, wbc’s & platelets were progressively getting lower & they did a bmb to confirm the secondary cancer aml (mds). we got 2nd & 3rd opinions to confirm the diagnosis.

[Jimbob]

Lori and Grant,
Watch and wait is not a bad idea for CMML. It can “smolder” for a very long time, as long as the patient takes care not to over-stress the body.
While waiting, I would recommend that Grant – or any other person with disease – do what he can to help his body get as strong as possible. One way to do so would be to work with doctors in alternative or complimentary medical fields who have had successful experience in treating patients with CMML.
I was fortunate to find a naturapathic physician who is also an acupuncturist and one of the founders of the Oregon College of Oriental Medicine. She used various forms of treatment but started me out with a detox diet and then a restricted diet to give my body the nutrition it needs with as few negative input as possible. If you put garbage in, the body cannot perform that way it is meant to. Treatment is different for different people so I would suggest you consider checking this out for yourself.
Since Grant is young and otherwise healthy, he has a very good chance of recovery. While waiting, watching and, hopefully getting his system in better shape, I would still suggest he look for a donor, so that one will be available immediately if that becomes a necessity.
Jim

[Lori C]

Jack,

Wow, I am sorry to hear of your wife’s journey. Sounds like she has been through the wringer as, I’m sure, have you. Can the drugs that your wife initially took for the breast lumpectomy cause secondary cancers such as the AML? I’ve read somewhere that some cancer drugs can cause additional cancers. My best to you both!

[Lori C]

Jimbob,

Thanks for your suggestions. We live in a small town so naturapathic physicians and accupunturists may be in short supply, but I’ll look around and see if I can find some. It can’t hurt Grant to eat in a more healthy manner. He changed jobs back in January due to stress so his stress level is somewhat better at the time being. I see that you had a transplant. What was that process like? Grant has no siblings and both his parents are deceased so his donor would have to come from the registry if/when he had a transplant. His dr. is against a transplant at this time because Grant currently has good quality of life and the dr. does not want to take away from that. So, his dr. has not even looked for a donor yet. Is this a common practice? Should the patient insist upon finding a donor even if a transplant isn’t considered at this time? Thanks for your help.

[jaxem]

lori
yes, the drug that was given to her and has been known to cause aml/mds, is adriamycin. I hear the words from many people, “Don’t worry. We’ve come a long way in treating cancer.” I say we’ve got a much longer way to go to cure it!

[Lori C]

Jack,

That is just terrible to think that one drug that she had to take to save her life may be the culprit for what she is facing now! Yes, I would agree that we do have a long way to go to cure cancer! It can be discouraging to say the least. Grant’s dr. told us that there are some new drugs in development for CMML and indeed there are, but they’re only in Phase II right now. Even if they go to Phase IV and get FDA approval, what will the side effects be? It’s just a shame that the drugs we have available sometimes cause harm while trying to do good.

[Author]

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