It's a Roller Coaster Ride - my 3 drug regimen continues

[knstone]

Hi fellow MDS colleagues,
I haven't posted in a while as my counts, blasts, etc, have been on a roller coaster ride. My blast counts have been as follows:
April 2004= 15%, blasts controlled to normal using Thalidomide for 30 months, then Revlimid for 18 months. Stopped Revlimid Aug 2008 due to low platelets, WBC.
Tried Vidaza for 4 cycles with no apparent effect.
Blasts 15% in May 2009, Platelets min of 9 in late May 2009, started Promacta for platelets in June 2009, platelet counts stablized in mid 20-30's. Hgb minimum reached in July 2009, restarted Thalidomide which resulted in an improvement in Hgb.
Blasts 40% in Oct 2009, started low dose Dacogen(decitabine), 10mg/one day per week/every week.
Blasts 16% in late Feb 2010, increased Dacogen to 15mg/one da/wk, Hgb increased until July 2010.
Blasts 40% in mid July 2010, increased Dacogen to 20mg/one da/wk.
Blasts 10% in Sept 2010 but Hgb decreased at 20mg/wk dosage.
Reducing Dacogen dosage in Nov 2010 to see if Hgb will increase.
Some concern if the last BMB is really accurate but pathologist stated it was a very good sample.
I'm continuing on the 3 drug regimen: Low dose Dacogen, Thalidomide, and Promacta. The low dose Dacogen is very easy to take with minimal increase in fatigue and little effect on blood counts.
The low dose Dacogen may be a result of studies in these links:
http://precedings.nature.com/documents/3044/version/1
http://www.ncbi.nlm.nih.gov/pubmed/20501800

Feeling pretty good and CBC counts holding fairly steady. Looking forward to my 7th year since diagnosis and celebrating another Marriage anniversary in May 2011.

[Neil Cuadra]

It's always good to hear from you, Kirby. What are your current counts like?

Do you know anybody else who's taking the "Kirby Combo" of thalidomide, dacogen, and promacta?

[Birgitta-A]

Hi Kirby,
You have really managed to find treatments for your disease - it is not easy since we are so different. As you perhaps have seen I have started to take Thalidomide June 2010 and responded well with tx independence (I was tx dependent at dx 4 years ago) and platelets increasing from 22 June 2010 to 77 this week.

Hope your response will continue!
kind regards
Birgitta-A

[knstone]

Hi Birgitta and Neil,
Glad you are on thalidomide Birgitta, it worked very good for me-increasing all counts for 30+ months. My doctor in Cincinnati has had good success with thalidomide even thought it is not "in favor" with most doctors in the US. We think it probably saved me in mid 2009 as restarting it caused my very low blood counts to increase and allow the use of Dacogen.

Neil, I don't know anyone else on my current 3 drug combo. Doctors at the Cleveland Clinic suggested the "low dose" dacogen to me in May of 2009, they also suggested I might try Promacta (elthrombopag) for platelets at that time. While attending an AA/MDS patient conference in Cleveland at that time I met 2 other patients on the "low dose" dacogen who were under the care of Cleveland Clinic doctors. Since the thalidomide worked well for me earlier my local doctor suggested we continue with it, hence the 3 drug combo. Rather unusual but since it seems to be working we have not changed anything but the Dacogen dosage. We are trying to "fine tune" the Dacogen dosage so it might control the MDS/AML yet let the blood counts increase.

My current counts are still fairly low: Hgb mid 7's to 8's, ANC 150-350 (.15 to .35), platelets 20-35. Hgb was in the 9's when at a slightly lower dacogen dosage and we are trying to get the Hgb back to that level or higher.

MDS/AML is so different for each patient that treating it seems more like an "art" than a science at times.

[crpa]

Hi:

Do you know of you or any of the other patients had problems with high liver
enzymes while on the lower dose treatment?
My husband Larry did try the Dacogen before his BMT but his liver did not like it.
But I was hoping to suggest it to his Doc for a post sct treatment for maintence regimen.
He is now on Cyclopsorine and Prednisone for some GVH issues, so we are searching for alternative treatment.
Thanks for any ideas.
Christine

[rose mcmillin]

Hi Kirby, You always seem to find the right combo at the right time. Mostly, I am so happy to see you of the site again. Your posts have given encouragement and helped so many people.I hope that you will continue again. You were missed. Thanks always for your honesty and helpful info. Sincerely, Rose

[Lori Patrick]

Such good information here! It is good to hear what others try. I have my third bmb next week to see if my chemo worked to put me in remission. Brother is waiting as a perfect stem cell match. Keep the information coming! And God bless you all. Lori

[Sues7]

Originally Posted by rose mcmillin

Hi Kirby, You always seem to find the right combo at the right time. Mostly, I am so happy to see you of the site again. Your posts have given encouragement and helped so many people.I hope that you will continue again. You were missed. Thanks always for your honesty and helpful info. Sincerely, Rose

Hi Rose and all members,
I am replying to your specific post because your situation is similiar to mine. My father who will be 84 soon was just diagnosed with CMML-2 recently. The bone marrow showed 18% blasts (but his blood showed less than 5%, I don't understand how it works but..) His white blood count is 23.9, hematocrit is 27.4, hemoglobin is 8.9, and platelets are 17 (up from 11 three weeks ago). They want to start him on Vidaza in a few days. He has no chromosome problems, I guess it is the monocytes causing the problem as they are reproducing.. (MO#-25) and abnormal. He has no symptoms so he is hesitant on starting the Vidaza. He carries on with his routine of going out each day and acts physically normal. I would love some input from everyone and I hope all of you are doing well.

[knstone]

Hi to my MDS colleagues,
Wanted to update my Roller Coaster Ride. I've had a downhill run for a few months, hopefully it's now going uphill again (uphill is Good).

My blasts increased to 17% on 1/18/11, they were 10% on 9/14/10. The Hgb also has had a slow but consistent decrease to 6.0 .

We changed my complex drug protocol:
1. changed Thalidomide to Revlimid on 1/27/11.
2. changed Procrit 60, 1/wk to Aranesp 200mgc.
3. continuing Dacogen(decitabine), one day/week at 10 or 15mg.
Added Iron infusions for last 7 wks, may stop this soon.
Continuing Promacta(elthrombopag) at 75mg/day.

Since restarting the Revlimid the Hgb stabilized and has increased to by 15% during the last 3 weeks, 6.0 to 6.9; and is on a sharp linear increase.

I've been blessed to have the rare second response to an MDS drug that was started earlier. Two doctors have indicated that this can happen in some cases.

We are hoping the recent apparent good response will continue for a long time. I'll update the results in a few weeks-months.

[Neil Cuadra]

You are one of a kind, Kirby!

Could you say more about the iron infusions? What's been changing?

[knstone]

Hi Neil,
The major change has been in my Hgb counts which dropped from 9.8 in Aug 2010 to 6.0 in Feb 2010, a steady decrease even with the blasts fairly low. My doctor was concerned and decided to change from Procrit to Aranesp, feeling that the slightly different molecule might work where Procrit didn't seemed to be helping after many months of usage.

The iron (Venofer at 200mg/week) was started by my doctor in an attempt to help the Hgb. Recall that I've never had blood transfusions so my ferritin level was not very high, just over the upper limit of 336. After 7 weeks of Venofer the ferritin level was 805 last week and I think we may stop soon.

The most significant change has been from Thalidomide to Revlimid. The good secondary response I had with Thalidomide since Jun 2009 seemed to be waning after 18 months. We had stopped Revlimid in Oct 2008 due to platelets and WBC dropping even though the Hgb was holding in 12's. My platelets and WBC are much lower than when we stopped the Revlimid but have been steady for over a year so we decided to retry the Revlimid at a low dose, 5 mg/day and watch the platelets and WBC. Thus far the results have been good and we are hoping that a good secondary response to Revlimid may continue. We will continue the Dacogen (decitabine) at 10-15 mg on the one day per week protocol.

Thanks for your support, tell Ruth Hi for Nancy and I.

[Birgitta-A]

Hi Kirby,
You know I think you are lucky to have a very engaged doctor, who really will try to give you the very best combination of drugs ! Hope Revlimid will increase HGB and not decrease the other counts!
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednisone since June 2010 with good result. Last tx Sept 2010. HGB 11,9 and platelets 109 (compared to 22).

[cathybee1]

Hi, Kirby, we came much later to this than some of the others, but just wanted you to know that when we began reading this forum, your story was very inspirational to us both. And it continues to be.

[Steve Kessler]

Hi Kirby,

Good to see you're keepin' on keepin' on. I am traveling to Stanford Tuesday for what I expect will be my first infusion of Estybon (ON910.NA) from Onconova. My blasts rose unexpectedly from 8% two months ago to 25% kast week. I'm glad to see you've had several transitions back from AML to MDS again. It gives me hope. I've been on BSC (Best supportive care) since November 2009 without any noticeable change until recently. My platelets dropped to 26K so Dr Peter Greenberg (who runs the Stanford study and is one of the world superstars) says he wants to boost my platelets also.

I'm glad you haven't needed TX's through all of this. I just had my 146th unit and am ready to graduate to Senior Vampire status. My serum ferritin has been kept under 1000 with Exjade, currently about 800, but the constant TX's are taking their toll as I'm weaker than not too long ago.

Estybon was reported on at the larest ASH meeting and is a different type of drug, a D1 inhibitor. Stage 1 and II trials went well so I'm hopeful I will respond to this drug.

10 years is a long time to have MDS and I'm lucky to still be here. Keep in touch.

Steve
smartmony@msn.com

[knstone]

Hi All,
My good response to restarting Revlimid after being off it for 27 months is continuing. Hgb now 9.7 from 6.0 in a period of 6 weeks. We are all surprised and very pleased at the secondary response. Other counts are all up as well but not to the same magnitude.

Don't ever give up, a secondary response to a drug can sometimes work.

Dear cathybee1, thanks for your kind words. Stay positive and some of the drugs now available can help Bruce.

[Birgitta-A]

Hi Kirby,
Very good that your are responding again to Revlimid !

My little wagon in the roller coaster is still slowly going upwards - latest counts HGB 12.4 and platelets 112.

Hi Steve,
You beat me with your 146 units of PRBCs - I got 142 before I was transfusion independent Sept 2010 after 4.5 years with MDS.
Kind regards
Birgitta-A

[Steve Kessler]

Now up to 150 and every 2 weeks. Trying a new drug from Onconova at Stanford, but preliminary results look poor. Have needed to reduce dosage because of diarrhea. Looks like I'm approaching the end of the trail soon unless I get real lucky. Too weak and old for Transplant and normal aML regimen offers high chance of not leaving hospital. I am glad for you but am making EOL plans.
Steve

[knstone]

Hi Steve,
Sorry the Onconova doesn't seem to be working.
One patient in Chicago area reported that Sapacitabine seems to have lower side effects, it is an oral drug in clinical trials. Do you think you could try it?

I've had good results with low dose Dacogen (decitabine), you might contact
Saunthararajah, Yogen, at the Cleveland Clinic about suggested dosages.

Keep a positive attitude, you are a long term survivor and we all appreciate your encouragement and record in battling MDS/AML.

[Steve Kessler]

I'm at Stanford for my 3rd infusion. Reduced dose, so just waiting to see how I do. I've checked the AML trials and may consider one of those soon.
I'll keep you posted.

[ccpat]

Hi Steve. Haven't "met" you, but you hang in there at Stanford, and we just might! My husband, Ron, goes for a BMT in 3 weeks. If there is help to be had, Stanford is the place to be. You have put up a gallant fight! Vidaza only worked 18 months for Ron. You seem to hang on to that positive attitude, so don't let go of it just yet! Our thoughts are with you and hope you find strength and comfort in all of us who join in your fight. Pat

[sophia68]

Originally Posted by knstone

Hi All,
My good response to restarting Revlimid after being off it for 27 months is continuing. Hgb now 9.7 from 6.0 in a period of 6 weeks. We are all surprised and very pleased at the secondary response. Other counts are all up as well but not to the same magnitude.

Don't ever give up, a secondary response to a drug can sometimes work.

Dear cathybee1, thanks for your kind words. Stay positive and some of the drugs now available can help Bruce.

Hi knstone,

My father was treated with vidaza, then thalomid and now revlimid since a month and a half ago...How long did it take for the revlimid to start working?

[knstone]

Hi Sophie,
In my case I've always responded to Thalidomide or Revlimid in 3-5 weeks. Some take longer so hopefully your Dad will respond soon.

After 9 weeks on Revlimid my Hgb is now 11.3, continuing a rapid rise. Platelets stable in mid 20's-mid 30's, ANC has been higher. Also continuing Dacogen at low dose, one injection per week.

[cathybee1]

Kirby, that's great news about your hgb and ANC.

I'm smiling too.

[Neel]

Hi kirby,

Good luck on ur response to revlimid again. IMy father is MDS RAEB-2, diagnosed in Oct 2010. We are planning to start thalidomide, can you guide in regard to this medicine, i mean what other medicines u took with thalidomide initially and other aspects.


Regards,

Neel

[knstone]

To all my MDS colleagues,
My roller coaster ride is really climbing a high point, my Hgb was 11.3 last week after 9 weeks on Revlimid along with the other drugs. I'm enjoying the "view" and we are travelling a little to visit friends, vacation spots, etc.,while I'm doing so well. I'm hoping for a flat ride at the higher levels for a while.

Hi Neel,
I used Thalidomide for 30 months starting in April of 2004. My blasts were at 14-16% blasts. In my case I responded within 3-5 weeks and my blood counts started increasing. Studies show about 25-30% of MDS patients may respond to thalidomide.

I took Procrit and Neupogen until the blood counts increased to safe levels.

Over the period of Thalidomide use I experienced:
1. Increased sleepiness and hard to wake up in mornings, lots of coffee helps - HA.
2. Neuropathy in the hands and feet. This results in a numbness and "tingling" in the feet and hands. One gets used to this and it is not too painful. The neuropathy does not go away after stopping the medication. Neurontin can help reduce the pain, I take 300 mg/day. On the whole the neuropathy is a small price to pay for controlling the MDS. I take Acytel-L-Carnitine, a vitamin-herb, 500mg 2/day; it was recommended by one MDS center of excellence. Not sure how much it helps but I always taken it.
3. General tiredness and fatigue seem to accompany MDS drugs, Procrit and Neupogen.

While Thalidomide is not very popular with many MDS doctors it worked very will in my case, actually with a 2nd used starting about 2 years ago.
I hope your father responds well.
Regards,