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I was diagnosed with ITP about 12 years ago, and then with CMML 4 years ago. The hematologist gave me literature saying my expected life span was 2 years. Don’t believe it. I am on the MDS side of the MPD/MDS divide. I feel a bit like a fraud, in that CMML has not much affected my life style and I feel good, after taking precautions re avoiding bleeding (no aspirin or anti-inflammatories, line nostrils with Vaseline nightly, moisturize skin). I have acquired an enlarged spleen. My period of not being affected may not last, but I enjoy it while I can.
Many with ITP (low platelets) seem to have similar symptoms; there are two platelet disorder support groups (PDSA/PDSO), one in USA and one in UK. You may learn something there.
Best wishes HMB

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Jack, just noticed your posts. I had a double hernia, laparoscopic repair 2 1/2 years ago and had a 0.6 unit infusion of platelets (raised 40 to 66) before a colonoscopy early this year.
I avoided catheters, barely, and was immensely swollen for a week after the hernia. I didn’t ice after the hernia surgery; I would recommend icing and anything else to reduce the swelling. I recommend any other readers facing the hernia to pursue the avoidance of swelling.
My surgeon had done above 500 laparoscopics, so for the others whose doctors are dubious, being in a first class medical care area and having an experienced surgeon may be a consideration. The surgeon also told me that he was just able to repack the hernia and almost had to go to a full cut.
Best wishes Henry B

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I believe that Gleevec is a MED for CML, Chronic Myelogenous Leukemia, which is a disease of the white cells. Gleevec is very effective, with a reasonably long term cure.

CMML is a disease of platelets, although some percent of the whites (usually in a normal range) are monocytic (and, thus, I believe, ineffective in fighting disease). I have been advised if my white count reduced by the percent of monocytes is above 1000, then I am OK.

I recollect previous posts, where it seemed that a CML-CMML confusion led to a belief in Gleevec for CMML. I doubt it, but would be interested if Gleevec is confirmed for CMML/ITP/thrombocytopenia.

Best wishes Henry B.

[hmblume]

Juiced pineapple and (ground) black sesame seeds improved my platelets for a period, and then it didn’t. The juiced pineapple should be fresh. I don’t know but wonder also if pineapple should be as fresh and/or if the source of the pineapple is a factor. Best wishes

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CML and CMML are very different. Gleevec has reportly superb results (90%) in treating CML (which I believe to be very high white counts). It is sometimes used to treat some variations of CMML. Thus, doctors not recommending it generally and lack of general success with Gleevec treating CMML seem very understandable. It also seems to me that ITP and CMML both have low platelets; ITP seems to have unreported monocytes on the ITP support group web-site. I had ITP for about 6 years before diagnosis changed to CMML; I have not had treatment for either, except that anti-inflammatories and some MEDS have been ruled out and I take anti-bleeding precautions. So far I have been hanging in, but deep-down I expect to be facing some treatment within a year. I don’t know how to categorize the variations of CMML.
Best wishes

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[I believe] Glucosamine with or without Chondratin will not help arthritis (New England Journal of Medicine, earlier this year). Those of us who still pop Glucosamine hope that it will help the cartilege, which can be pretty thin in former athletes.
Gout websites list gout (and I assume gout-like maladies) as a co-morbidity of leukemia, and I would also assume also MDS with some leukemia-similar blood counts. Also, some meds and especiallly anti-inflammatories are bad for those with low platelets.
To have related maladies is unsurprising, and diagnoses are probably less sure and less likely to be offered. Good luck

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I believe there are a small number with leukemia or MDS newly diagnosed at any age, but around 65 the numbers grow rapidly. I was diagnosed with ITP about age 65 and with CMML age 72. CMML has not been a part of MDS in Europe for some time and recently in the US it became MPD or MDS/MPD.
As I read the ITP support group (USA, UK has a different one) website, it seems to me that there is an overlap with CMML and ITP. I also suspect that many have not seen a hematologist, more have not had a bone marrow biopsy, so even more overlap in diagnosis and symptoms may be possible.

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Susanj, I have CMML which is still somewhat under the MDS umbrella in the USA. In the last 3 months, I have acquired “probably gout” or “probably pseudo-gout”, and am being medicated for the gout. It started in the 5th finger of my right hand, Colchicine medicine seemed to activate the gout in my left hand. After nearly 3 months, I now also have a swollen right foot and swollen big toe of that foot.
The gout web-sites state that gout may be a co-morbidity of leukemia (and we have some of the leukemia blood counts). Allopurinol is taken to reduce one’s uric acid, but doesn’t treat the gout. Colchicine alleviates the gout and/or makes the next attack less severe, but doesn’t get at the cause of gout. However, those with low platelets (me) are warned against Colchicine. The dietary recommendations are included in the gout web-sites; Patti also has recommendations.
I will try cherry juice; also will end now. I tend to believe that symptoms and treatments are sensitive to blood counts, to uric acid level, to diet, and probably a lot more…and thus what works for me may not work for you.
Best wishes and with great interest HB

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Probably silly to comment, but
-is the patient off all anti-inflammatories?
-does he/she line nostrils with Vaseline or something better once or twice daily?

My situation is not extreme and my prior nosebleeds manageable, but the precautions above have made nosebleeds a minor issue to date. I used to carry a little nosebleed repair kit with me, to repair on the road, but I have gotten confident. Good luck

[hmblume]

re platelets and pineapple….I wish I knew.Some report great success, some no effect. I have come to believe that the pineapple or juice must be very fresh. Also, that the sesame seeds should be ground.
While I am trying pineapple, I have reservations that the pineapple raises the platelet count as counted, but may not delay the onset of AML or fundamentally increase one’s resistance to bleeding. Don’t know, just sceptical.

There is a Platelet Disorder Support Group (PDSO), with a web-site and reader’s forum. Most have ITP…low platelets…but also other symptoms suggesting to me some overlap with CMML.

Advertising in the PDSO journal was
GetWellNatural.com with an ITP kit, which is claimed to improve platelets as well as immune response over perhaps 3 months. PDSO does not endorse getwellnatural but their office reported a majority of favorable comment.

Any experience from the MDS folks??

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Susanj, et al
Pharmion has a booklet on Vidaza; call them.
They talked and listened at the AAMDS-I update meeting in Denver last July. In my perception, about 6% get remission, about 10% get significant improvement, and 25-40% have quality of life decline more slowly. There are also things you can do when being treated, such as anti-nausea treatment. As I follow this forum and listen, some get great help while some get little. Pharmion recommends 4 sets (a set is 7 daily treatments followed by a month off, to recover or live). Many have declining blood counts after 2 sets and stop. At any rate, Vidaza is considered for most a temporary fix, although some are in remission for years.
In my case, Dacogen (decitibine) is just approved and some (in clinical trial) report improved platelet count with Dacogen, which looks better for me with CMML, although my Stanford consultant has doubts.
Finally, a center of excellence seems advisable for you. HB

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Jocelyn, CMML is a small (10%) of MDS patients.It is hard to find a lot about it. Call the MDS-Foundation, the AAMDS-I Foundation, and Leukemia & Lymphoma Society offices (800 numbers); they will send you stuff. The literature is pessimistic. Find a local support group if you can. LLS has local support groups; AAMDS-I has a Bay Area support group.

You are not alone, but also it will take a long time to find matching symptoms and experiences.

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Lucym
I had nosebleeds with platelets around 80.I was removed from all anti-inflammatories and aspirin and some other medication. I line my nostrils with Vaseline EVERY night. The backs of my hands would also bleed with the least abrasion; use of skin moistener helps. My platelets are down to the 40’s, but bleeding has not been a problem recently. You may need to experiment a little. Good Luck HB

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Californiamom
Find a ‘Center of Excellence’. In Northern California, it is Stanford, starting with Peter Greenberg. [We had our local MDS Support group meeting in Oakland yesterday; all of us but one had recently seen Greenberg’s associate Dr. Jason Gotlib. All were also favorably impressed by the care and human factors shown by Gotlib and Greenberg.] Many hematologists do not stay up with the latest in MDS. No two of us in our group have the same symptoms, nor the same remedies; this is a scary, diverse disease.
It takes a year to learn about this. The main message is to keep trying. “FIND A WAY”
My best wishes.

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Jack, my hematologist took me off all anti-inflammatories. I was told that platelet count is not lowered, but that the blood clotting effect is lowered by about 10,000 for a week. Since stopping ibuprofen and pletal, my nosebleeds are very much reduced.

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