cmml treatment low platelets

[tytd]

Hello Birgitta and Mcgill54,
It's good to hear about those platelet responses.
Birgitta, I'm glad to hear that you have had a great response to thalidomide. I wonder how it works? Does it decrease fibrosis or have you had another BMB to see? Of course, I'm sure you haven't if you have been doing so well. Has your ferritin decreased since you haven't needed transfusions? I'm sure you would like to get off the iron chelator? McGill54, thanks for reporting in on your response to Nplate. I'm so glad that you've had a good response so far. I certainly can identify with the tendency to micromanage, as I do also. I think it is important to "be on top of things" to prevent errors but can certainly understand other patients who just want to trust that their doctor will do what is right. Continued good luck to the both of you.

[cathybee1]

It's always wonderful to read good news. Don't want to hijack the thread here, but Birgitta, your news about your progress is awesome. Hope you continue to be transfusion free and that your white counts have also improved.

[Birgitta-A]

Hi tydt and cathybee,
Thalidomide is working in many ways - many of them probably still unknown. It is an immunomodulatory drug and inhibits the cytokines tumour necrosis factor-alpha, interleukins 1-beta, 6, 12, and granulocyte macrophage-colony stimulating factor. The drug stimulates primary human T, NKT and NK lymphocytes inducing their proliferation, cytokine production, and cytotoxic activity. It is anti-angiogenic (inhibits new blood vessels to the tumor cells), anti-proliferative, and pro-apoptotic (increases programmed cell death).

In some patients the drug decreases fibrosis - I have not yet had a BMB.

My ferritin was 5600 in July when I had got transfusions every week - now it is 1100 . When it is less than 1000 I will stop taking Exjade - 500 mg/day.

My WBCs have not increased. As you can see Thalidomide inhibits granulocyte macrophage-colony stimulating factor. Initially I took 50 mg/day but my WBCs decreased so I can only take 4 caps/week - that is 29 mg/day.
I still take Neupogen 2 injections/week (since neutropenic fever Sept 2007).

We don't know how long the drug will have effect but my HGB and platelets are still increasing very slowly.
Kind regards
Birgitta-A

[mcgill54]

Hi All, just want to report that after 2nd dose of Nplate platelets increased to 62, today I got the 3rd dose increased to 1000 mcg.No side effects or other lab changes. This dose protocal is different than some of the earlier studies and they feel it is effective for me. Of course there always remains the issues of blast increases, reticulin etc, and if this response will be durable, but again with limited options and my age this seems like the best one.
So glad that you Brigitta are doing so very well with your regimen. It is hard to know what will work, but we are very fortunate to have some good results. My best to all, with many thanks for ongoing support. McGill54

[Birgitta-A]

Hi Mcgill,
Wonderful with a platelet count of 62 !
Kind regards
Birgitta-A

[tytd]

Hello McGill54,
I hope that you are continuing to do well on the Nplate. That was quite a jump to 62k. Have you had any side effects at all? thanks tytd

[mcgill54]

Hi Birgitta, Tyd and all, am happy to report after 3rd dose of 1000mcg platelets are up to 87, had another dose yesterday and next week will get further info re tx plan. No side effects, except maybe a bit more tired, although hard to blame on this,,still working with trainer, taking balance class which is pretty challenging, and swimmimg. This schedule has been disrupted by our bad winter and numerous drs appts, but hopefully I will be able to continue. All other labs are stable ,with minor fluctuations so far and No Blasts. The big issue is how long the response will last..it really is hard but necessary to stay in the moment.
Best wishes, McGill54

[tytd]

Wow, that is a great response, McGill. Yes, living in the moment is important. I guess the drawback to starting on therapy and getting blood checked every week is that it's hard to escape the fact that you have this disease. Sometimes it's best just to try and "forget about it". I wonder whether you will need to go back on baby aspirin for your stent. I guess nobody knows the answer to that as we are sailing in uncharted waters. Tytd

[Birgitta-A]

Hi Mcgill,
Yes, we can only be grateful for our good responses and hope that they will last a long time . We are both aware of that we should be "living in the moment" as tydt wrote.
Kind regards
Birgitta-A

[mcgill54]

Hi All, just a quick update, after 4 shots platelets still responding, they were 85 and had another dose yesterday. I feel fine, but am now concerned because the wbc's are creeping up each week, and now are at 11, hi normal at my lab. Dr says "don't worry", which I find unhelpful without further detail but they don't think it's related to Nplate and it does happen with CMML..so more anxiety especially for my wife. Best regards, McGill54

[cathybee1]

McGill54, that is good news that you are continuing to respond and you feeling fine, thank you so much for the update. Hopefully the doctors will be able to adjust the dosage if necessary.

[Birgitta-A]

Hi Mcgill,
Good that your platelet count is increasing and that you are watching the WBCs. Perhaps you could ask them to control if there are more blast cells in the blood than you had before Nplate?
Kind regards
Birgitta-A
Latest counts: HGB 12.2, platelets 112

[mcgill54]

Hi Birgitta, so glad that your counts are so good. I have no blasts in blood, and they are monitoring every week before the injection, so we'll just have to watch. There is not enough data on the Nplate effecting anything in wbc's so it seems just like the natural course of this hybrid disease which is both dysplastic, and proliferative, or maybe they will just stabilize. I have restarted the low dose aspirin , so a little less worry about the heart.
Best regards, McGill54

[Birgitta-A]

Hi Mcgill,
As far as I understand almost all patients with malignant hematological diseases have some blast cells in their blood - I have 0.1 - 0.2 % since dx. Very good if you have no blast cells and they really are controlling the differential every week.
Kind regards
Birgitta-A

[mcgill54]

Just had 6th dose, todays count 72,anything over 50 is good news, also the WBC are down to 9 today, so I guess the roller coaster continues.The Dr is very pleased , I am grateful for the response. Hope you're all doing well. All the best, Mc Gill54

[tytd]

It is quite encouraging to hear of such good responses that mcgill54 and Birgitta have had. Here's hoping for a very long durable response. Just for anyone interested with very low platelets and no other options, the NIH has started recruiting for their trial with Promacta in low risk MDS patients.

[mcgill54]

Hi All, today I had my 9th dose of Nplate 1000mcg, platelets were 77 before injection. I find they have been fluctuating abit,last week they were 52, and at times the auto count and the manual count differ. Dr says this is common. Hgb slowly went from 11+ to 10+ and during this period had an episode of angina manifested by sudden fatigue and the slightest chest pressure. This resulted in an overnight admission where there were No new findings and they statred me on Imdur a long acting nitoglycerine to help improve blood supply to heart. I have felt fine since but less active dueto weather and numerous dr appointments. The Cardiologist will manage this medically and wants me to excercise as tolerated.Glad to be back on the low dose aspirin. Regards , best wishes Mc Gill54