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]

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%:mad: on 1/18/11, they were 10% on 9/14/10. The Hgb also has had a slow but consistent decrease to 6.0 :eek:.

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:confused:

[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':confused: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]

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,

[Neel]

Thanx for the information kirby, deeply appriciated.

God be with u.

While interaction one of the fellow members father, who also happens to be in india , has stated that his father had response of arnd 5/6 months with thalidomide.

Kirby, if u dont mind, can u pls give in detail in regrd to your counts before and after starting of thalidomide, and how counts behaved while u were on the drug.

regards,

Neel

[knstone]

Hi fellow MDS colleagues,
The roller coaster is again on a good increase, going uphill sharply:).
My latest BMB results show the Blasts reduced to 8% from 16% four months ago. Cellularity increased to 30% ("normal" for 70 yrs of age) from 20%.
My Hgb increased from 6.0 to 11.7 in 12 weeks after restarting Revlimid at 5 mg/day. This is my second GREAT response to restarting a drug that had stopped working earlier in my fight against MDS.

I feel the combination of Revlimid with the very low dose Dacogen (decitabine) and the Promacta may be increasing the effectiveness.

Don't ever give up in fighting MDS. You never know what might work.

[tytd]

It's very good and inspiring to hear that you are doing so well, Kirby. Thanks for telling your story and inspiring other patients to learn more about their disease, seek the best care possible, be patient and hang on for the ride. Tytd

[ccpat]

Well, Kirby, good luck with your continued good responses!!! I just LOVE how everyone knows their "counts"!!

My husband, Ron is now an inpatient at Stanford, preparing for his transplant on the 27th. I've been attending all the classes they offer on how to deal with this and feel better about...let's see...hmmm..about what they are doing. Ron's reaction to the ATG has been minimal. He's doing well and comes "home" to our rented apt. on Friday. The roller coaster continues, with no guarantees for each day. Once I get to know the other patients and caregivers, it adds another whole, new dimension.

Best of luck to you in your fight! Be sure to notice the flowers, the birds, the clouds in the sky as you walk along this troubled path!

Pat

[Neel]

congrats kirby and good luck with ur medications

regards,


neel

[grejulian]

Kirby - man - you must be one hell of a guy to be so positive after all you've been through!!!

I need input from "all y'all".............:)

My 46 year old husband was dx 8/2010 RAEB2 (blasts= 10%) Vidaza treatment monthly ever since. Was looking to be tx dependant until last transfusion on 12/23 when all blood counts suddenly went up and stayed in the normal range. Repeat bmb 1/14 showed 8% decrease in blasts with better cytogenetics. (long arm 7th chromosome). Last bmb 4/8 showed absolutely 100% normal marrow!!!.......so - here is my ponderance.....they say this will not last. Urging for a transplant. We have met with 2 transplant teams both saying the same.......MDS will return. Meanwhile - vidaza continues - but is oh so much harder now that he is in remission........So - IF (and i am positive minded and trusting the miracle of sustained remission is our future)...but IF/WHEN the MDS returns - does anyone know - will it be explosive or gradual? Anyone know others that have had such wonderful results with 7-8 rounds of Vidaza, how long the remission lasts (of course we are all different - but is there an average length of remission?) The thought of a transplant scares the bejeesus out of me :eek:and i feel like we'd be greedy opening up to life threatening complications should we not just appreciate the wonderful 3 weeks a month we get. He has residual deficits from a serious motorcycle accident 9 years ago and has decreased lung function, further testing needed to see if he'd be a good candidate for the transplant. Of course - he wasnt supposed to survive that either........he is a walking miracle! Would like advice and to hear your thoughts? thanks! (hope you all have a happy memorial day weekend!):p

[Neil Cuadra]

grejulian,

Do you know if your husband has a matched sibling who could be his donor?

[knstone]

Hi Fellow MDS colleagues,
After a great response to Revlimid+Dacogen and Promacta from Feb 2011 to the end of May 2011 my counts started a rapid drop.:(
The platelets were the first to drop, often the case with Revlimid, and I found myself with platelets below 10 for 4 weeks in a row, the last being 5.
My doctor(s) recommended a battery of drugs to help the platelets: Nplate, IVIG, prednisone and Danazole. After 3 weeks the platelets are now at 74, a tremendous response. I had a good response in 2 weeks with the platelets at 28. We are not sure what med is causing the increase, I'm inclined to think it might be the Nplate.
My Hgb is still dropping but the rate of drop is decreasing so I'm looking for a turn around soon. We are retrying thalidomide but I'm not too confident since it's a 3rd attempt after being off of it for only 5 months. Hope to restart Dacogen soon.

I'm waiting for the the coaster to start uphill soon on all CBC counts.

[cheri]

Good luck Kirby!
You sure are a wonder!

[Gokcen]

http://www.hopkinsmedicine.org/news/media/releases/half_matched_transplants_widen_pool_of_donors

My mother will have Half-matched SCT soon, i hope it will end up with a great success..

...Never give up...

[knstone]

Hi fellow MDS colleagues,
My last post in early Aug had a good platelet recovery with Nplate and restarting Thalidomide for the 3rd time, Hgb bottomed at 4.6; then the Hgb increased at a rapid rate to current value of 10.3 on an increasing track.

Platelets have held in 140-160 range on Nplate. Low dose Dacogen continued on the 1 day/week regimine.
Overall the counts have been increasing and I feel better:), however a BMB on 9/20 had blasts at 25%:mad:. Cellularity was better and no chromosome abnormalities.

We think the Nplate may have increased the blasts and have stopped it to see the effect on platelets. If they drop below 50 we may add it occasionally.

At this point staying on Thalidomide 75 mg/day(avg), Dacogen 15-20 mg/one day/wk, and occasional Nplate.

Read good quote: "Don't worry about the things you can't do. Just get on with the things you can do."

MDS may limit our physical ability to some extent but we can still do many things.

[Birgitta-A]

Hi Kirby,
Very good that your HGB and platelets are OK :)! Too bad with the blast cells.

Perhaps the low platelet count during the spring 2011 was due to Revlimid - that drug often decreases platelets. If you tried Promacta again instead of Nplate now when you take Thalidomide and Dacogen your platelets will eventually not be so low.

You know Nplate has actually increased blast cells in all studies in MDS patients long before the drug was approved for patients with Immune Thrombocytopenic Purpura. I was surprised when they was allowed to continue studies in MDS patients with that drug.

Take care!
Kind regards
Birgitta-A

[DanL]

Kirby,

Your story and persistence are inspiring. Thank you for the updates.

[cathybee1]

Hi, Kirby, I do look forward to your updates. I always hope for good news, but even when the news is not as good as we would like it to be, you leave us with something to think about.

Your quote came at just the right time in Bruce and my journey. Thank you very much for sharing it.

[knstone]

Hi fellow MDS colleagues,
:)I celebrate my 8th year of successful treatments for MDS on April 21. I've had an unusual treatment regimine but it has been very successful in my case.
I was told I might survive 2 years, starting as RAEB-2 with 15% blasts; but here I am at 8 years.
My message is: "Don't ever give up and stay positive".
We all respond differently but I feel a positive attitude always helps.

I'm currently experiencing good blood counts, "good" for an MDS/AML patient. My worst count is the WBC and ANC, WBC is around 1.0. Hgb has been in 10-11 range for over 7 months. Platelets are being controlled in 30 to 120 range by Nplate injections, 2 wks on-4 wks off. Thalidomide at 75mg/day, Dacogen at 10 mg/ one day per week.
It's a unique combination but it's working. I'm now in my 3rd cycle of using Thalidomide, it has been able to make my counts recover when restarted after a few months off. I have had no blood transfusions during the entire 8 year response.

I feel a major component in my success is due to finding great doctors who will "think outside the box" in trying different treatments.

[cathybee1]

You are an inspiration to all of us, Kirby.

[knstone]

Hi fellow MDS/AML colleagues,
A BMB 7/12 showed lower blasts:), 21% down from 30% in 9/11. Even though I'm in AML (by definition) my counts are stable and the blasts have dropped. I have a fair energy level.
I've been on Nplate for platelets continuously for 1 year and yet the blasts are reduced. Nplate has controlled my platelets, keeping them above 50.
The low dose Dacogen, 1 injection/week at 10-15 mg, may be controlling the MDS/AML and keeping the blasts under control.
I'm continuing on Thalidomide at 75mg/day average.

I've had almost a year of very good counts, Hgb 9.8-11.4, platelets 50-100. The ANC is low, running 200-600 (.2 to .6); but with care I've avoided illness. My wife and I are OCD about cleaning tables, never touching door knobs or faucets in public places; so far it has worked:D.

My response has been very good and unusual for starting at RAEB-1 almost 9 years ago. I attribute it to finding great doctors who will try unusual treatments and personally having a large part in the treatment choices. I've talked to many patients who have not been able to find doctors who will deviate from the normal drug protocols, in my case I would not have survived this long if the normal treatments were used. The AA/MDS patient conferences have helped a lot, I would advise all patients and caregivers to attend.

Always stay positive and never give up, don't forget the power of prayer.

[Al's Wife]

Kirby,

God has blessed you. That is such great news and gives hope to all of us - patients and caregivers. Thanks for posting. Your story is such an inspiration. And it is great that you have found doctors that will think outside the box - no doubt, thanks to your prodding.

Keep up the great numbers.

Linda

[Neil Cuadra]

with care I've avoided illness
That little phrase says a lot, Kirby. You take the extra precautions against infections that I call "making your own luck". We do the same, even years after transplant.

And nobody demonstrates better than you do the value of staying informed and being a full partner in your healthcare.

Keep never giving up! :)

[cathybee1]

Kirby, I do look forward to your posts. I'm so glad about the improvement in your counts, you continue to be such an inspiration to us all. Your doctors definitely do think outside the box.