[Kirby]

I’m a non 5q patient and responded to Revlimid for 18 months. I had responded well to thalidomide prior to switching to Revlimid.
I think the % of non 5q responders is like many other drugs on the order of 25-30%.

[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.

[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.

[Kirby]

Hi Simon,
I’m new to Vidaza, one cycle so far, I start the next on Dec 8. I did subQ injections, in my case there was no pain with each injection. They actually felt better going in than the Procrit and Neupogen I take. I did have very slight soreness to the touch in my arms a couple of days after the injections, not bad at all.

I’ve talked to a couple of others who do ok on the injections.
One lady, however, was thin and the lack of fat made her injections very painful, she now uses infusions.

If one has a port it would seem like the infusions might be a good option.

[Kirby]

Hi Paml, Zoe and Jaxem,

Hi Paml,
Cleveland Clinic is one of the centers of excellence and they have lots of experience with MDS, they would be a good place to consult. My Dr. in Cincinnati is very experienced with MDS if you wanted another opinion.
I was at 16% blasts in early 2004, only Thalidomide was available, after 3 months my blasts were normal. Revlimid worked a shorter time and now I’m depending on Vidaza. Both Revlimid and Vidaza would seem to be options in your case, Revlimid is easy to try, a pill each night. Vidaza is often used when the blasts are high as in your case. It often seems to depend on each doctor’s experience as to the drug they try. Dr. Sekeres at the Cleveland Clinic is experienced with each drug. This link to an AA/MDS site may work and will let you hear a presentation by Dr. Sekeres: http://live.blueskybroadcast.com/bsb/client/CL_DEFAULT.asp?Client=680927&PCAT=1016&CAT=1020
(I hope it works).

Hi Jaxem, I’ve thought of a transplant but as long as the medications work I’m pretty satisfied. The “Hutch” in Seattle, WA is the premier MDS transplant facility and is a top choice. Even their data shows that 50% of MDS transplants suffer death within 12 months, so the odds are not too good. Some are successful however and it is an option for many.
I’m sorry for the loss of your wife. I worry about leaving my wife and family but so far I’m holding in there.

My counts are holding stable, I did not suffer any large drops during days 10-17 after the Vidaza was given (this is often the minimum count period during Vidaza treatments).

I’m looking forward to the a full 5 day cycle starting 12/8/08 at or near the normal dosage.

[Kirby]

Thanks to all for your responses.
My platelet levels continue to be somewhat unstable: up to 30 on 10/13, down to 23 on 10/15, WBC is also up and down but Neupogen continues to boost the WBC. I also respond well to Procrit and use it as needed. My Hgb is the least affected and continues in the high 10 to high 11 area.

The bone marrow cellularity was 10-20% on 10/1 and this low value has the doctors concerned with starting Vidaza at the moment. The feeling of 3 different doctors, one from Moffett, one from Ariz Cancer Center, and my own doctor agree on this point. There is general agreement that the Revlimid has impacted the bone marrow adversely in the platelet and WBC production. I’m well beyond the median response of non -5q patients on Revlimid.
My platelets started to drop after 14 months and while trying to readjust the Revlimid levels the drop became severe at 18 months.

We will continue to watch the counts and my have another BMB within a week or so to look at cellularity and the blast%.

I continue optimistic that I can start on Vidaza soon, probably at reduced dosages to minimize the depression of the WBC and Platelets.

[Kirby]

Hi Plantcollector,
I have had some minor chromosome abnormalities but not consistent, they appear to be transient in nature in my case.
Did you try Revlimid, it often works well for 5q-patients? It sounds like your MDS has remained fairly calm since 2001.
Hope you do well on Vidaza, keep me informed.
I’ve talked to several Vidaza patients who are having great results, we can both go for that!!

[Kirby]

Hi D,

Sorry the link didn’t work, I’ll try entering again:
http://bloodjournal.hematologylibrar…urcetype=HWCIT
It looks the same but does work on another web forum. You might try copying and pasting into the address bar of your browser.

I did very good on Revlimid at 10 mg/day for 17 months, then I had drops in platelets to 50’s. We went off for 2 weeks then restarted at 5 mg/everyother day for an average of 2.5 mg/day.

At present the counts are stable, Hgb great at 12-12.5, platelets in 55-75 range, WBC in 1.9-3.0 range.

Some long responding Revlimid patients can hold good Hgb at lower but mostly adequate platelets and WBC.

[Kirby]

Hi deltoid,

This link should take you to a recent Revlimid trial involving non -5q MDS patients:
http://bloodjournal.hematologylibrar…urcetype=HWCIT

I’ve been on Revlimid for 20 months, I’m non -5q.
Medicare D insurance will pay for it in my case, prior to Med D insur I had Medco and it paid also.
Some insurance companies may not pay.

hope this helps.

[Kirby]

Hi All,
I’ve been on Revlimid for 18 months, never transfusion dependent. I think the Dr. can prescribe it if you have MDS diagnosis.
Medicare part D covers mine, but at a high cost.
$4088 the first month, then approx $400/month after that.
Side effects of Revlimid have been minimal in my case.

[Kirby]

Hi Lynn,
The following article shows that non -5q MDS patients respond well to Revlimid.

http://bloodjournal.hematologylibrary.or…ur cetype=HWCIT

You might be able to use it with your insurance company to get Revlimid.

[Kirby]

HI All,

I’ve been on Revlimid for 18 months, still working good. One patient at last years AA/MDS conf in Las Vegas had been on Revlimid for 5 years. I think one in AZ has been on it longer.
With some patients it seems to stop working after a year or two, all patients seem to respond differently to any MDS drugs.

I think once you are on a medicine you will need it as long as it will work for you.

Many MDS patient that are -5q will have the chromosome abnormality go away for a while. If the Revlimid stops working the -5q may come back.

[Kirby]

Dear Mary Lou,
I just learned of Neil’s death and am very sorry.
We will all miss him very much. He always had great answers and was very encouraging. Neil was one of the “old timers” that we always looked forward to hearing. He will be greatly missed by all of us and our families.
We will keep you in our thoughts and prayers.

[Kirby]

Hi Warren,
I responded quickly to both thalidomide and Revlimid. I started at 16% blasts with thalidomide and was at 2% within 5 weeks. I’ve read that it can take upto 3-4 months with some patients for a response.
Vidaza or Dacogen are noted to reduce blasts in some patients.
Have you considered Vidaza if the Revlimid doesn’t work. Some patients will respond to one of the two (Vid or Dac) but not the other.
Hopefully the Revlimid will “kick in” for you.

[Kirby]

Dear Laleigh,
I’ve been on Revlimid for 14 months, minimal side effects. It’s easy to take, one pill a day.
It can help the Hgb and RBC in some patients.
If it doesn’t work then Vidaza could be the next option.

[Author]

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