Question on patients responding to prevously used treatment - Secondary Response
 

Hi All,
Have any of you responded to a drug that was taken earlier, perhaps it quit working, and then you responded to it again? I think this may be called a secondary response.

I appear to be having such a response to Thalidomide. I started on Thalidomide 5.5 years ago, it seemed to quit working after 32 months. I took Revlimid for 21 months, then it stopped working. I tried Vidaza for 4 cycles over a period of 5 months with no apparent response. One infusion of low dose Dacogen was tried, it dramatically lowered my counts.

Finally, almost as a last resort we restarted Thalidomide in late June 09, after 12 weeks my counts have improved almost dramatically.

My question also concerns how long anyone has been able to remain on a "seconday response", my doctor indicated it would be shorter in duration.

Whatever it is we are thankful.

Secondary Revlimid
 

Hi Kirby,
I tried Revlimid about 5 years ago and my counts dropped like a rock. I'm 5q- and 11q23. I quit after reducing the dosage after about 3 months. A bone marrow biopsy following the quitting showed some improvements in the cells, but the meds were just too powerful. I've been on Vidaza for about 4 years now and have improved but it seems to have stalled now. I went on a reduced dose of Revlimid, 5mg twice a week about 6 months ago. Counts are still dropping when I take revlimid. I'm getting a BMB tomorrow to see what changes have occurred over the last 6 months. I'll get back to you when I know the results.
Steve

Hi Steve
 

It will be interesting to see what your BMB shows. I'll probably have a BMB in a few weeks. My Hgb has improved to 7.1 from 4.5 over the last 10 weeks, platelets from 9-10 to 31. My blasts were 16-17% on 5/6/09, with the counts improving it may be that the blasts are now lower. The low dose Dacogen may have reduced them as well as the Thalidomide. I'm also taking Promacta for the platelets, it's only approved for ITP but I was able to get it as a trial, it may be helping the platelets but we are not sure.

You are certainly at a great center for MDS, hopefully the Revlimid can continue to help you fight MDS. Have any of your counts improved with the Revlimid over the last 6 months?

Keep us informed.

Your MDS colleague,

Two drug regimen
 

Hi Kirby,
Sorry to take so long getting back to you. My BMB showed little change although the results for visual and flow were very different. The visual showed 10% blasts while the flow analysis showed only 2%, 1% fewer than the previous one. I'm not sure which to trust.

Anyhow, I went off of the low dose regimen of Revlimid about 3 months ago and then skipped vidaza for September because my counts were too low, possibly a holdover from the last prior revlimid doses. Counts were excellent in October so I'm taking a second month vacation from vidaza. Not sure where I'll go from here.

I'm feeling fine and have plenty of energy. The energy boost started about 4 months ago when I started taking wellbutrin. This normally a drug for ADHD kids, but the doc prescribing it said it could work to boost my energy and she was right.

Latest BMB
 

Hi Steve,
Your BMB sounded good, flowcytometry sometimes seems more accurate, eliminates human error.

I had a BMB on 10/6/09, the results were not good. Blasts now at 36%-flow, 40%-manual.
This was very surprising since my blood counts have been going up since 7/6. The bone marrow cellularity had increased to 30%, almost normal, it was as low as 10-15%.

We started Dacogen on a low dose, one day/week trial. I will stay on the thalidomide and Promacta to see what happens. The last Dacogen was on 5/20/09, the blasts on 5/6/09 were 17%.

I'll keep you informed of my CBC progress using the Dacogen.

I'm feeling fairly good, the same as during the past 8 weeks when my blood counts improved.

From two drugs to none
 

Hi Kirby,
Sorry to hear your blast count is so high. Hope the Promacta helps your platelets. Based on the count, you are into leukemia. Have you asked your doc about leukemia drugs that may be more appropriate for you?

As mentioned in my last missive, I went off of Revlimid prior to the BMB. My counts rebounded really well so we decided to give me a vacation from Vidaza. As of now, the only MDS med I'm on is Exjade. My serum ferritin is just over 1000 so I may drop that also soon. I was on for a year about 2 years ago and my count dropped from 1500 to 800. It stayed low for about a year and I started up on it again. Very expensive; I blow through the donut hole in a little more than a month.

Not sure what I'll be trying next, back to Vidaza or something else.

Let me know how you're doing.
Steve

Kirby,

Sorry to hear about the blast increase. Just wanted to let you know I will be praying.

Zoe

Hi Zoe and Steve,
We are not sure what the blasts are doing at the moment. My blood counts were at their minimum in July 09, since then they have increased, Hgb from 4.5 to 8.7 using Thalidomide. One theory is that the blasts were actually higher than 36 in the July-Aug timeframe and are coming down - It's a theory that I like - HA. My doctor said one could have blasts as high as 60-70% and still survive with difficulty.

I'm trying Dacogen at 1 infusion/week along with the Thalidomide. My early treatment was with Thalidomide in 2004 and I was a good responder to it.
Not sure if the Dacogen is working, will have to wait and see.

Hope both of you continue to do well in your MDS fight.

Other thoughts
 

Hi Kirby,
I just received an email update from AAMDS. Their November bulletin has video presentations embedded within that has presentations from the June conference. I saw a bunch of world expert names with good things to say. Worth loggin on.

I hope your doc is right that you are heading back down but I would think about a second opinion.
Steve

Latest news -Good Response starting
 

Hi All,
After having pneumonia and being hospitalized from 11/8 to 11/13 my blood counts have started a rapid increase.

I've been on low dose Dacogen, one infusion per week for 6 of the last 9 weeks. Also continuing to use thalidomide and Promacta(for platelets). My platelets are now at 65, WBC at 2.8, and Hgb increasing to 7.9 (it was in the 8's prior to the pneumonia)

My doctor thinks the thalidomide may be working in concert with the low dose Dacogen. It's a rather complicated drug schedule but since it seems to be working at the moment we aren't changing anything yet.;)

I'm fairly confident that the blasts are being reduced by the drugs otherwise the counts would not be increasing.

Thalidomide + Dacogen + Promacta
 

Hi Kirby,
Congratulation to your good counts :)! You are lucky to have a doctor who dares try different drugs - as far as I understand you are the only member of this forum that can receive Promacta.
Kind regards
Birgitta-A

Counts increasing
 

Hi All,
My response to the low dose Dacogen and the other drugs continues to improve. I've had 9 infusions of Dacogen on the one/week basis during the past 12 weeks and weekly infusions the past 5 weeks.
My Hgb and platelets have improved dramatically.
12/02/09 Hgb=7.3
12/30/09 Hgb=10.8 an increase of 0.88 Hgb points per week over the last 4 weeks, the platelets have increased to a 54-65 range.

My energy level has improved a lot.

A BMB is planned for late Jan, hopefully it will show a reduction in the blast%.

response
 

That's great news Kirby. You must feel like running a marathon with that Hb after being so low for so long. Can you clarify what dose of Dacogen you get weekly in mg/m2 and what dose of Promacta you are on? Have your WBCs been affected by the Dacogen. How did they come up with that schedule for the Dacogen. Thanks and continued good luck.

info for tytd
 

Hi tytd,
I've answered some of your questions on a private post to you.

The low dose Dacogen has not seemed to affect the WBC, although of all
the counts the WBC is remaining the lowest.

Marrow improved - blasts reduced
 

To my MDS colleagues,
:)Latest results incouraging.
BMB on 2/24/10 shows improved marrow cellularity: 45-50%, highest in several years, Blasts reduced to 14% from 35% on 10/09. Blood counts improved from minimums in 6/09. Hgb mid 10's-11's, platelets mid 20's-50's, ANC low at 300-600.
I'm still on the 3 drug regimen: Thalidomide 100mg/day, Dacogen 10mg/wk, Promacta 75mg/day. One Procrit 60k/wk, one Neupogen 480/wk.
We are not sure which drug is responsible for the improvements, but will not change the treatment plan until necessary.
The low dose Dacogen was recommended by the Cleveland Clinic, the one day/week dosage is being studed there by MDS researchers, the goal would be to move up to 20mg/day/wk. My doctor has had good results with Thalidomide and I responded to it as the first drug I tried in 2004.
I've had 6 years and counting, looking for a few more.

Latest counts
 

Hi Kirby,
Congratulation to the good counts :)!

I still hope to be able to get Promacta and have found a paper about Promacta in Hematological Malignancy (AML, MDS, Lymphoma, MPD and other)on the net. Perhaps my doctor will use that report to get Promacta for me.
Kind regards
Birgitta-A

Hi Birgitta - Promacta
 

You might want to check at Promactacares.com, they arranged my Rx for Promacta even though it is not currently approved for MDS. There is another site by GlaxoSmithKline, maker of Promacta, that assists US residents on Medicare: http://www.gskforyou.com/16_programs.htm

Perhaps you and your doctor might be able to get Promacta for you.

Hello Kirby,
I am very glad that your blasts are down and counts are up. Looks like you have found a winning combination! Thanks so much for posting and giving hope to Birgitta and I and others about the possibility that Promacta may be an option if needed in the future. It is also good to know that it hasn't increased your blasts as reported in some MDS patients who took the other platelet drug, Nplate. I checked into a clinical trial posted at NIH about using Promacta in low risk MDS but they said they haven't registered patients yet since they are having problems getting the drug for the study. I'm still hanging with "Watch and wait" for now. I wish you continued good luck. Thanks tytd.

Promacta
 

Hi Kirby,
You know I live in Sweden so I don't know if my doctor will be able to get Promacta (called Revolade in the EU) for me. I have no bleeding symptoms but my platelets are low.
Kind regards
Birgitta-A