Started Revlimid - good results

[knstone]

Hi all,
After 32 months on Thalidomide it started loosing effectiveness.
It had taken me from 16% blasts in April 04 to essentially no blasts until some were detected in Dec 2006. Blasts were less than 5% but dysplastic cells were seen in the BMB for the first time since starting Thal.
We started Revlimid in late Dec 06. I have had no difficulties with it, my counts after 8 weeks are the best in many months. My platelets and ANC were not affected to any extent, this seems rare but we all react differently.
All counts are above minimums. The side effects are much less than thalidomide. When I was diagnosed in Feb 2004, no drugs for MDS were available, Thalidomide was used by some; it saved my life. Now I hope to get more years out of Revlimid.

Don't ever give up and keep a positive spirit while fighting MDS.

[Albert Seufert]

Pleased to hear of your success with Revlimid. Any chromosome irregularities?

[seniorrico]

Praise the Lord on your good experience with Revlimid. Were you ever transfusion dependent?
Warren Rich

[knstone]

Hi Albert and Warren,

Thanks for your comments.

My MDS mainly affects WBC and Platelets, the Hgb never was too low; hence I've never had any transfusions. I respond very well to Procrit and Neupogen when required.

My chromosome analysis is fairly clear, of 7 BMB chromosome analyses, two occurances of Trisomy 15 were present, and one occurance of Trisomy 4. My Doctor isn't too concerned with these.

I had essentially "perfect" health until 2002 when I was diagnosed with Celiac disease, an intolerance to Gluten as found in wheat, rye, and barley. Then in 2004 the MDS was diagnosed.

Perhaps my unusually good response to both Thalidomide and Revlimid is due to my otherwise "good" health. I also take a battery of vitamins that were started before the Thalidomide, whether they help or not is not clear but since I'm doing good I've decided not to change anything.

Regards, Kirby, Cincinnati

[Helen Robinson]

Kirby

What dose of revlimid are you taking? At long last my husband can access revlimid but the dose is 10mg. He always gets a serious side effect when he starts a new drug so we are hoping revlimid will work well.

Helen

[knstone]

HI Helen,
My dosage is 10 mg/day. The side effects are not too bad. Some itching of the scalp. Revlimid's side effects are much less than the Thalidomide I was on for 32 months.
Many patients suffer a drop in platelets or WBC when starting Revlimid but this seems to stabilize if the drug works for them.
I'm now in 14th week and seem stable in all counts.

[knstone]

Hi fellow MDS colleagues,

My great response to Revlimid continues. A BMB on 5/2/07, after 4 full months on Revlimid revealed the blasts were <2%, down from 4.5% on 12/6/06. Counts are good: all in low normal ranges except platelets which are at 110. The platelets have dropped from 160 over the past 4 months. The Dr. is not concerned at present but we will watch.

I am not a -5q patient so the response is especially good in my case.

We are hoping for a long run on Revlimid.

[Tom M]

I hope you do have a long run on Revlimid. I was on it for 27 days, 10mg, and my counts dropped really low. I had a 103 fever on top of the low counts and was admitted for iv antibiotics. After 4 days, I was discharged. In the hospital, I received 4 untis of rbc's and my hgb came back up to 8.6. Surprisingly, after discharge my hgb hit a high of 10.3 and has been very slowly dropping to a current 8.4 over the last 4 weeks. I don't know if this is due to the Revlimid or to the shark liver oil I have been taking since my discharge from the hospital. Anyway, my Dr. wants to get me back on the REvlimid at a lower dosage of 5mg and hopefully stabilize my counts. It has been nice not needing transfusions every week. Time will tell.

[Garbs]

I too did much better on Revlimid than on Thalidomide. And I am not a 5 chromosone either.
But after about 9 months I am taking it with a Procrit shot every week and my counts are still sliding down. Although much better than without it.

[Zoe's Life]

Kirby,

That is wonderful! I am glad it is working for you.

Zoe

[Helen Robinson]

Hello Kirby and Tom

We also have good results from Revlimid. David had your experience Tom, but as soon as his white cells began to recover the protocol was to take 5mg which worked. His Hb slowly rose and now after five months he is normal at 145. ten weeks since his last Tx. His platelets have been the last to recover. He did get a DVT which is a rare side effect but he is prone to clots so will be on warfarin for life.

I have heard that Revlimid often stops working eventually.
Has anyone been taking it for over three years? It is certainly a wonder drug when it works.

Best wishes to every one

Helen

[knstone]

At the AA/MDS conf in Las Vegas one male patient had been on Revlimid for 48 months without a transfusion, counts near normal. One patient in Arizona who was on the first Revlimid trials at the Univ of Arizona has been on Revlimid for at least 5 years. These are the longest responses I've heard of for patients on Revlimid.

It seems that everyone is different but at least a few have had long responses. Others seem to stop in 1-2 years.

Dr. Steven Gore related at the AA/MDS Conf that Dr. Silverman in NY has had some patients on Vidaza for 8-9 years, those are the longest responses I've heard of for an MDS drug. Vidaza seems to be a good choice if and when Revlimid quits or one progresses to leukemia. It's no where near as convenient as one capsule a day but it may be the best in the end.

Let's hope we can last a long time on Revlimid.

[knstone]

After 12 months on Revlimid, 10 mg/day, I remain stable. CBC counts are good. A BMB in early Nov shows no dysplastic cells. Blasts were 3%.
My response has been very good.

I hope others can have similar responses.

[Ruth Cuadra]

Hi, Kirby.

Thanks for sharing this great news! You give hope to other patients with every post. I'm glad you're feel good.

Regards,
Ruth

[Helen Robinson]

Great news Kirby.

After three months of normal Hb, David's reds cell count has slowly been drifting down. He is booked for a Tx on Friday becuase it would be hard to organise before the new year. He is disappointed but the Drs say the Revlimid is still working if the time between Txs increases. Since the last was July 23 we are greatful for the respite.

The last BMB in Oct showed only normal cells but the 5q- was still there. the next is in Feb so we shall wait and see. You do a lot of that with MDS.

Enjoy the Christmas season

Helen

[Helen Robinson]

Kirby,

How are you progressing? David has been having transfusions since before Christmas and at the last BMB on feb 3 they decided to increase his dose back to 10mg. Because he is on an experimental protocol we were very pleased.

I hope his counts do not collapse as they did last time but we are being positive. He is much better physically than when he began the treatment last April. We have travelled closer to the hospital for peace of mind so I am having an enforced rest with time to use the computer.

I hope all is well with you

Helen

[knstone]

Hi Helen,
Hopefully the 10 mg/day will control the MDS better for your husband.

My counts remain stable, the platelets are dropping a little but not dangerous at this point. I have been on 10 mg/day since starting in late Dec 2006.

If your husband does not respond to the new dosage I wonder if
Vidaza might be tried?

It is good you are close to where you get treatments.
Tell you husband to keep up the fight.

[Tom M]

Hi everyone....I posted here in June after having my revlimid dosage reduced to 5mg. I am glad to say I am still transfusion free......10 months now. My platelets flucuate between 90 and 140, and my neutrophils remain below normal, but so far, so good. I have read, on this thread, of some people going as long as 5 years transfusion free on revlimid. This is great news. My one concern is the cost. I can only hope my medical keeps paying for this med, but at $7000 a month, I don't know how long it will go before they finally say "too much." I was surprised to find that the cost is rising for this medication, rather than coming down. My last script came in at $7700 for 28 5mg pills. Perhaps this belongs on another thread, but I just had to air it.

[Zoe's Life]

Tom,

I know what you mean about the drug costs! I am on Aranesp, which I swear is like the price of gas--expensive, fluctuating, but ultimately rising! Sometimes, like gas, it goes down a bit one month, but the trend is ever upward. Even with my insurance I can't afford it. I have to keep applying for aid. My disease is stable at this point, so the expense is the hardest aspect for me.

Zoe