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

[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 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!)

[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/...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%. 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.

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]

Originally Posted by knstone

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.