Questions on Dacogen, Revlimid, Neumega Ferritin

[MJM]

Yesterday I posted an update to the "Our Story" thread I started about two weeks ago. I included a couple of questions in my update, but my concern is they may not be seen by all the helpful participants in this forum since the thread subject doesn’t relate directly to them. I hope nobody minds if I repeat those questions, along with some new ones, in this new thread. So here goes:

1. Dacogen – I have read many of the posts regarding successes with Dacogen, and also about the potential for severe drops in blood counts. But I’m curious if anybody has had a partial response to Vidaza (i.e. reduction in blasts but no reduction in transfusion dependency) and then had subsequent success with Dacogen. Also, are the drops in counts brought on by Dacogen worse than Vidaza’s? Any other side effects? Is the treatment protocol the same (one week on, three weeks off)?

2. Revlimid – I know that this was initially limited to 5Qminus patients, but then expanded to non-5Qminus patients with some success. Do we have any non-5Q’s here that have tried it? What were the side effects? Any successes?

3. Neumega growth factor for platelets – Has anybody tried this? Any successes at raising platelet count? What kind of side effects did you have, if any? The research I’ve read on it is several years old; does anybody have anything current?

4. Ferritin – Joseph’s ferritin level was 1860 in January, 2500 in February, and 3100 last week. He usually gets two bags of red every week, occasionally three. His doctor hasn’t suggested any chelation therapy yet. From what I’ve read, if it’s under 2500 there’s not much danger of ill effects, but of course now he’s over that mark. It appears from the forums that most patients are treated at lower levels than that, so we need to decide whether or not to push for it. Which treatment is better – Exjade or Desferral? What kind of side effects can occur? I’ve also read that doctors don’t normally treat patients with more severe cases of MDS, because of their shorter life expectancy. Is that true?

As you can probably tell, we’re at a loss right now as to what direction to go next (I think the doctor is, too), so we would be immensely grateful for any information you can provide. Thank you in advance.

Maureen

[Kirby]

Hi Maureen,
I used Revlimid for 18 mo. successfully as a non -5q patient. It stopped working at that time. Side effects were minimal, the least of any of the drugs I’ve tried.

I tried Vidaza for 4 cycles after Revlimid, no real success. My counts dropped after each cycle and did not recover to the point before the prevous cycle.

I tried a low-dose Dacogen treatment involving a weekly one day dosage at 2/3 the normal 5 day dosage. I only had one week, ie one injection, my counts dropped drastically so we stopped.
My counts dropped more severly with the Dacogen, but my bone
marrow may have been in a worse condition. The Cleveland Clinic suggested the Dacogen 1 inj/wk plan, it seemed reasonable but did not work in my case. I’ve heard that some patients responded better to Dacogen than Vidaza but no real data seems available.

I tried Neumega for 5 months for platelets with little success, it may have helped for about 4 weeks, then stopped. It does not seem to work well for MDS patients..

I’m currently using Promacta (elthrombopag) for platelets. It was obtained from PromactaCares.com on sort of a mini-trial. Several pages are filled out by the patient and doctor. It is a capsule taken at night, easy, no noticible side effects. Promacta seems to have stabilized my platelets in the mid teens. I have no bleeding.
Since Promacta is obtained as a drug outside clinic it is costly, on Medicare it took me thru the "donut hole".

I’m on Procrit 60000/week, Neupogen 480/week or sometimes 2X wk.,
Promacta daily. Trying Thalidomide again. I’ve had no transfusions.

Perhaps staying on the Vidaza will reduce the transfusions.

[MJM]

Hi Kirby,

Thanks so much for sharing your experiences. It’s helpful to know about your 18 months of success with Revlimid; Joseph’s doctor didn’t seem to think it was worth trying for non-5q-minus patients. It’s a shame it didn’t continue working for you, but 18 months of a successful treatment would certainly be welcomed. I plan to gather as much research as I can and then approach the doctor about it.

We asked his doctor this week about trying the Neumega again. We had tried it before, briefly, but it was discontinued after two or three injections because of side effects (shortness of breath, chest tightness). The third injection didn’t seem to cause any side effects, so Joseph and I thought it would be worth trying again. But the doctor said that in order for Neumega to work there must be some normal megakaryocytes in the bone marrow to begin with, and apparently Joseph has none. So he said the chance of it working would be infinitesimal, and not worth the risk of toxicity.

I am very interested in learning more about the Promacta, especially since you’ve seen some improvement in your platelet counts from it. We would be thrilled if we could get Joseph’s platelet count in the teens! I did a google search on it and found http://www.promactacares.com. There is a link to the prescribing information on Promacta, which explains that its primary usage is for the treatment of ITP. The only mention of MDS is a the very end, where it says "PROMACTA stimulates certain bone marrow cells to make platelets and may increase the risk for progression of underlying MDS or hematological malignancies." But if the manufacturer is running this "mini-trial", they must have found some success with it in treating MDS patients. If you have links to any studies or other information on this, I would be very grateful. That type of information would be helpful in supporting the suggestion when I bring it up to the doctor. Also, if there is anybody else out there with any information or experience to share on this drug, please let me know.

Thanks again,
Maureen

[Kirby]

Hi Maureen,

One bit of info on Promacta comes from an ITP forum.
http://discuss.pdsa.org/topic.asp?ARCHIVE=true&TOPIC_ID=21818
See the 2nd entry by Birgitta-A

It mentions that Promacta seems to kill certain leukemia cells in test tube tests. If this proves true it could be an added advantage to Promacta.

My use of Neumega was at very low dosages as recommended by MD Anderson.

Promacta has had no bad side effects on me, my renal functions are normal.

Hope this helps.

[sgoodman]

I am non-5q and have been on revlimid since March, 2005 and now am stable thanks to this drug. The side effects are moderate, but much better than thalidomide. One note-it can take several months to show any effect and there may even be a decline during the first few months before it begins to work.

[jimkufis]

Hello Maureen. Jim here. I have RA MDS for more than two years and in the last month tried Revlimid and Exjade. The Revlimid was originally for 5q- but can be used for other abnormal karyotypes. Mine is a 3q abnormal karyotype. After 3 weeks of Revlimid my Hb increased from 7.5g/dL to 9.9g/dL. My Ferritin was 2800 and after a month of 1500mg/day of Exjade it dropped to 711. These drugs have worked well for me in the early stage of medication and I hope this continues.

[tedcapecod]

Hi Maureen, I am a 78 year old who recently entered a drug trial sponsored by Amgen. The trial drug is romiplostim used in ITP cases. My platelets have been between 12-16 for over a year, yet I am tranfusion-independent. I was hoping for a bounce in my platelet count. Instead my HG dropped 2 grams to 9.2, platelets are back to 12, my white count is up 2000 to 5.3, not to mention my MDS has progressed with 10% increase in peripheral blood myeloblasts. Not all trial drugs work. Good Luck!

Ted

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