[Kirby]

I’m aware on one patient in Oklahoma who failed Vidaza and is now responding to Dacogen. His counts have improved and no TX for several months.
Seems like all MDS patients respond differently.
Dacogen might be worth a try, hope it works.

[Kirby]

Hi Liz, I’ve been on Revlimid for 8 months, I have itching at times but not seriously. I take one Tylenol PM at night to help go to sleep and
to help with the itching (it has benedryl), that usually works. If I have more itching than normal I will add another benedryl.
Revlimid has has worked very well for me, my platelets are holding around 140.

[Kirby]

Hi AlexD and all,
Alex, I had trouble sleeping with Revlimid after stopping thalidomide. Thalidomide makes one sleep like a baby while Revlimid doesn’t seem to do so. I’ve been taking one Tylenol PM at bedtime, about an hour after taking the 10 mg of Revlimid. Sometimes I feel itchy and I add a benedryll at the same time. This seems to help me fall asleep.

Hope you can continue to improve.

[Kirby]

Hi all,
My great response to Revlimid continues. After 4 months on Revlimid a BMB revealed blasts at <2%, down from 4.5% on 12/6/06. Fewer dysplastic cells were seen. My counts are above or near normal, Hgb=14. Platelets a little low at 110.

In 6th month on Revlimid at 10 mg/day. Side effects are negligible. I’m not -5q so my response is very good. I feel great.

I’m shooting for a long run on Revlimid.

[Kirby]

Hi June and Shell,

My wife and I will be attending the conference. It will be a good opportunity to meet other patients. The sessions with the Doctors should
also be very informative.

Looking forward to meeting all of you there.

Kirby and Nancy Stone

[Kirby]

Hi Cathy,
I am also having a good response to Revlimid, I started 12/24/06. I do not have the 5q deletion either. My MDS affects mainly the platelets and WBC with RBC least affected.

At one MDS center of excellence a contact of mine said that if the platelets hold in a 60-80 range they are not too concerned. If your other counts are ok it might be an option to watch the platelets longer. Taking a capsule is lots easier than the Vidaza treatments.

Did you have a drop in platelets or WBC when starting Revlimid, that often happens according to info from Celgene and can require lowering the dosage.

Hope your response holds longer.

[Kirby]

Dear Abdus Saleen,
My drugs are covered by Aetna thru a retirement insurance offered by my past employer. It covers the Revlimid without questions on -5q. You might try appealing, sometimes the clinic or Dr. can help in appealing. See if the insurance will allow it to be tried as an “off label” application, it has worked on non -5q MDS patients.
I also did very well on Thalidomide for 32 months, it is the precursor of Revlimid and has helped some MDS patients.

[Kirby]

sgoodman,
I’m on 10 mg/day. No significant side effects. Some scalp itching but not bad.

[Kirby]

Chuck,
2nd post didn’t work for some reason, here is the 3rd attempt: hope it works:

http://www.leukemia.org/all_page?item_id=161418

It doesn’t have the AML at the end.

Also updated my signature, now on Revlimid and doing great.

[Kirby]

Chuck,
Sorry the link didn’t list properly, hopefully this one will:

http://wwwleukemia.org/all_page?item_id=161418#AML

Remember to scroll to near the bottom.

[Kirby]

Chuck,
The link is:http://www.leukemia.org/all_page?item_id=161418#GBC

You must scroll down the page to find the AML programs. The recent one by Dr. Appelbaum is listed but the text, etc. will be available in a few weeks. It was excellent and very clearly explained. Keep checking to see it later.
Kirby

[Kirby]

Hi All,
The same Leukemia and Lymphoma Society had a good
program on AML treatments on Jan 25, 2007. The Dr. was from the “Hutch” in Seattle. It is a good one to listen to also.

Kirby Stone

[Kirby]

I’ve had excellent results with Thalidomide.
My counts all improved, I was RAEB-2 at 15% blasts and after 5 months I was 2% blasts.
I’ve maintained at 100mg/day. Univ of AZ personnel said 100mg/day was sufficient. Some want to push it higher and get bad side effects.
I tried 200mg/day for one week, too dizzy. Tried
150mg/wk for 2 weeks, then settled to 100mg/day
Some on the AA/MDS listserve are doing good at
50mg/day, one lady has been on it for 18 months,
her Hgb has improved.
I took Procrit and Neupogen weekly with it for several weeks, now only take them every 8-10 weeks if the WBC or RBC indicate I need them.
Counts are above or near minimum in all cases.
Thalidomide is easy to try, if it does work it
can show good results.
Everyone responds differently so it is difficult to make comparisons.
I have been on it for 9 months, some numbness in the hands and feet, but not too bad. Without it I feel I would already have transformed to AML.
Hope this helps.
Kirby

[Kirby]

I agree with you completely. It is so helpful to know who has what and if what they are doing can help you.

[Kirby]

Jim, the Univ of Arizona Cancer Clinic at Tucson,
Az is very good on MDS. Dr. List (MDS researcher) was there for years and now Dr. Mahadavan is in charge. It would be a good plaace for a second opinion on treatmetn.
I was there last March for possible treatment for MDS RAEB-t, I was judged too close to Leukemia to participate.
Since then I have had a very good response to Thalidomide, Procrit and Neupogen as needed. My blasts went from 15% to 2% in 5 months.
Everyone responds differently, your Mom might respond favorably.
Kirby Stone

[Author]

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