What to expect?

[vikasgoyal]

Dad's hgb fell from 8.5 to 5.5 over one year. His other counts have been pretty stable plus his kidney,liver ,heart test have been within normal range throughout. With such a low hgb level what should i expect in terms of life expectancy?

Any suggestions for any kind of treatment that he should try?

[bebop]

is he on transfusions?

[vikasgoyal]

4months back he needed 2units in every 2months when hgb used to come down to 7. Since last couple of months he had to take 2units in every 6weeks and hgb fell to 6. This time shockingly its been only 4weeks and his hgb stands at 5.5 which is very frightening. Doctors are suggesting Revlimid which i am not sure will work for patients w/o -5Q. We are completely lost and really do not not what should we be doing. Like i mentioned before he has no other issues apart from low hgb. He had a very high ringed sideroblast percentage when we got his bmb done last year. Should we get his copper/zinc checked?Any suggestions will be welcome.

[Chirley]

He definitely needs his copper level checked. Low copper can cause severe anaemia and high sideroblasts.

My sideroblasts were 58% before I had copper replacement. If the doctor won't order the test, you could always try giving him a copper supplement for a short time and see what happens but be very careful because too much copper can cause problems too.

Chirley

[billyb]

Vikasgoyal, Sorry to hear about your dad, leukemia takes a toll on the whole family, my wife operates decent on low rbc, we just get a lot of transfussions, ask you dads doctor if they are concerned about his dx possibly progressing into AML thats why they want to try to control things with Revlimid. I try not to focus on life expediency ( even though I do drift off into that area from time to time ) a lot of things can happen with leukemia that can either legthen or shorten someones life, there are a lot of factors in play, sometimes doctors dont say things in a way we can comprehend them, because if your in limbo ( not in remission ) there either treating things as they come about or trying to prevent things from getting worse. We find life less stressful when we focus on quality of life. Ya'll are in our prayers....Billy and Tina

[vikasgoyal]

Is it possible that even though disease is progressing it is still impacting only rbc but not the other counts? Is there an indicator that can tell us the disease progression w/o having bmb done?

[Chirley]

Hi, I'd watch out for a sudden large increase in the WCC or if there are blasts in the blood.

I'd still highly recommend a copper level.

[vikasgoyal]

you mean WBC going out of normal range?

[Chirley]

Yes, a higher than normal WCC.

[Mseth]

Vikas, revlimid is often tried for non 5q patients as well, and there are reports on success as well. My mothers doctor calls it a 'blind trial', After EPO did not work, My mother was prescribed Revlimid (Lenagio in India) 5 mg, but she could not take it beyond 3 days, she has never been good with medication in any case. If your dad's doctor is recommending, he could try this, and have the counts monitored weekly. As per the doctor, there is nothing else that can be tried for her currently. As you know, there are no clinical trials etc in India, and MDS itself is rare/rarely diagnosed.
Since dx in April 2013, my mother would get 2 units every 20 days (when Hb would fall below 7), last time 2units saw her through 30 days, so we are happy. I understand that the duration will vary every time.
Her case is very similar to your dad's case, only low Hb, rest all counts stable and well within normal range, which as per the doctor is very positive for MDS patients. She is also active and feels fine otherwise.

[vikasgoyal]

My dad is sensitive to most of the medicines as well which scares us a lot more when we think about putting him on those toxic drugs. He is getting treated in Delhi and as per the doctors they have very limited knowledge on MDS. Although we have shown him in US & UK but the line of treatment they talk about isint any different. I dont think there is a lot known about this disease yet and after reading about the different clinical trials going on it doesnt look likely that we are going to have any new effective drug available soon.

The 3 drugs which are approved are quiet toxic and it does not appear to me as if they actually improve the quality of life or extend the life significantly. Its all very disappointing.

[Mseth]

Yes Vikas, we are in Delhi too and feel the same way, there are no specialised MDS centers and very little awareness of the various issues that can come up at any time. Mumbai seems a bit more equipped to handle MDS, we have consulted various doctors and the conclusion is that transfusion led supportive care is the preferred line of treatment. Atleast it does not involve pain or much discomfort.
Even on this forum there are people who have multiple transfusions over many years so dont lose hope!!

[bebop]

I think he should get them more frequently. If revlimid is available it is worth a try.

[vikasgoyal]

I know revlimid lowers plt and wbc counts? Do they jump back to normal levels after one quits revlimid? How long one needs to be on it in case it works for someone?

[Birgitta-A]

Hi vikasgoyal,
Since July 2013 I have been taking Revlimid 5 mg/day + Prednisone (tapered dose). Low platelets initially is a common adverse effect but my platelets have not decreased. My WBC has decreased a little but I am taking Neupogen (Zarzio) once a week. I still don't know if my increased HGB depends on the Prednisone or Revlimid.
Kind regards
Birgitta-A
Chromosome aberration 12- and X-.

[gramous]

Hi vickasgoal,

Why is your father rmcd with one low count (red blood cell?) and not RARS? .What's his sideroblast count? Is he check for coper and zink level? HAs he blast in his blood of bone marrow? Sorry for the questions but I don't well understand good the diagnose. Kind regards, béné

[Mseth]

My mother took only 3 days Lenagio - 5 mg (revlimid brand in India), her platelets stayed within normal range but the White cells continued to decline for 4 weeks to 3,800 and then jumped back to normal of 6,900. Normal range 4,000 - 11,000. Even the doctor was surprised that 3 days of dose could cause so much change.
Each person responds differently and tolerance levels are different too.
If it can be tolerated its worth a try.

[Mseth]

Hi Gramous,

My mother too has RCMD diagnosis, but in the blood reports only the RBC counts are low. The Bone marrow biopsy reports showed dysplasia in all 3 cell lines which is the reason for RCMD diagnosis in my mother's case.

[Mseth]

Birgitta-A, very good news that Revlimid+Prednisone has increased your Hb.
My mothers doctor does not think that Prednisone will work for her, but he would like her to try Lenangio (Lenalidomide in India) once again. In the first attempt, she was able to take Lenangio-5 mg, only for 3 days and had to discontinue as she could not tolerate it.
Do you know if she can try a reduced weekly dose, say twice a week or alternate days? Maybe I can suggest this to her doctor?
Also, is there any difference between the medicine in India - Lenangio(generic Lenalidomide) and Revlimid? Maybe Revlimid will be better tolerated.

Thanks.

[gramous]

Originally Posted by Mseth

Hi Gramous,

My mother too has RCMD diagnosis, but in the blood reports only the RBC counts are low. The Bone marrow biopsy reports showed dysplasia in all 3 cell lines which is the reason for RCMD diagnosis in my mother's case.

Thank you for the information, I haven't think in terms of dysplasia in the bone marrow but only in cytopenia terms. Thank you

[vikasgoyal]

Even my dad has 1 cytopenia but the bone marrow shows dysplasia in all 3 lines. based on the blood smear test 3months back there were no blasts visible in blood. What i hear is that revlimid can suppress plt,wbc but it will bounce back to normal once we stop taking it?

Birgitta great news that the combination is working for you. Does it mean it has to be taken everyday until it's working ?That gives us hope.

[Birgitta-A]

Hi Mseth,
When your mother responded after 3 days with Revlimid she is so sensitive that she probably can try a lower dose for example 5 mg twice a week.

I didn't know that there already are generic drugs for Revlimid - I don't think the patent is 10 years old yet. If they say that it is Lenalidomide we hope that they have managed to make the "real" drug.

When I started to take Thalidomide 2010 I took 50 mg 7 days a week. My WBC decreased and could only tolerate 50 mg 4 days a week. That dose worked almost 3 years.
Kind regards
Birgitta-A

[Birgitta-A]

Hi vikasgoyal,
In most clinical trials with Revlimid the patients take 10 mg/day during 21 days in a 28 days cycle and no Prednisone (myeloma patients take Dexamethasone - similar to Prednisone).

I started with 5 mg Revlimid during 21 days in a 28 days cycle but have now increased to 5 mg/day.

We will see if my HGB will decrease when the Prednisone is stopped.
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A, thanks for the dose suggestion. All lenalidomide medicines in India say generic Lenalidomide. I will ask the doctor about trying Revlimid, though I am not sure if we can import this in India.

Hi Vikas,
Maybe you could check Revlimid/Lenangio with your Dad's doctor as well, and see what they are prescribing, both top Hema-Oncos prescribed Lenangio for my Mom, maybe Revlimid is worth a try for both your Dad & my Mom. In case he tries, please keep us posted on response, hope for a positive one.

Thanks for all the information, sometimes a few new ideas may make the difference to treatment. Always hopeful.

[vikasgoyal]

Hi Mseth,

Which doctor is treating your mother? My dad's doctor is Rahul Bhargava in medanta and i will make sure to ask him.

Thanks,