New Member/Dad has MDS

[JyotikaK]

Hi,

It is so nice to have a place where people understand what this disease is and what it does to you and your loved ones.

My Dad (60 yrs) was dx with MDS in July 2009, with a blast % of less than 5%, but his HB was the main concern. Dad is a diabetic and has had a heart surgery back in 1996 because of which his heart is weak.

One other major problem he has had for past 15 years is an hysterectal absis (fistula).

After the initial dx, he has been only on supportive care which was a RBC transfusion once in 30-45 days and platelet transfusion once in 2-3 months.

The doctors here were not very keen on starting vidaza, thelidomide, etc. given his overall health condition. But his quality of life has been constantly deteriorating, he has become half his size, has major body aches, loss of appetite, etc.

Given all this, we heard of this miracle worker, an Ayurvedic Doctor who apparently has a cure for everything. And, being desperate for a miracle we started the medicine he gave us along with the assurance that he can treat this.

Dont know whether we were being naive or just simply were overwhelmed hearing that dad can actually be better again, no one asked any questions, no logic prevailed and we started the medicine this ayurvedic doctor prescribed. This was around 2 months back.

Since then, dad's platelet requirement has become almost once in 10-15 days, he is constantly bleeding from the fistula, having nose bleeds on occasions, has had further loss of appetite, complains of headaches.

Saw some new doctor yesterday who is suggesting that the disease might have progressed as now his tlc is also dropping. She wants to get a new biopsy and then if he is still MDS wants to start him on dacogen.

At the same time the ayurvedic doctor is saying he is treating the disease and we should not start dacogen and just continue with transfusions and have his medicine.

In all this I feel I am losing my dad day by day slowly and it is just unbearable at times to see someone you love so much suffer in front of your eyes like this. It is becoming more and more difficult to look at him and give him the reassurance that he will be better again.

I have been reading posts and stories on this site for some days and it just gives me some faith that you can have a more complicated but yet a good life even with MDS. I am going to try and get dad to read some of the stuff here - it might give him some motivation.

Has anyone with MDS tried promacta for low platelets? Dad's platelets count is usually around 20000 nowadays. But with his fistula there is constant bleeding because of which his HB also goes down.

I will be praying for all of you when I pray for my Dad.

Jyotika

[Birgitta-A]

Hi Joytika,
You know platelets are very sensitive to a lot of drugs and food. I should never try unknown drugs like Ayurvedic medicine because my platelets have been low since dx (initial count 65, last count after 4 years 30). Here is a warning list for platelets:
http://www.pdsa.org/about-itp/warnings.html

The drug that has showed the best results in MDS is Vidaza with a little more than 50% of the patients responding. No one knows how the drug should be administrated to give the best results. One member of this forum is getting low dose Vidaza for 10 days in a 28 days cycle with good result.

One member of this forum (Kirby Stone) is getting Promacta with good result but the drug is expensive and not approved for MDS. The first trial in MDS patients will hopefully be reported in the fall 2010.

Hope your Dad will feel better with supportive therapy and perhaps some chemo!
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low white blood cells, asymptomatic

[JyotikaK]

Thanks so much for your post.

I have seen the warnings page and will definitely keep a tab on Dad's eating habits, didn't know dairy products could be harmful.

Let see what happens. As of now the plan is to get a fresh biopsy done.

Will keep posting his status.

Jyotika
_________________
Father dx MDS RAEB July 2009, on supportive care but platelets really low and active bleeding from fistula. Probably starting Dacogen.

[Neil Cuadra]

Progression of MDS is usually tracked by blast percentage. Dropping TLC (total lymphocyte count) can be a symptom in all forms of MDS.

Progression to acute leukemia, on the other hand, is often marked by elevated TLC. But an infection can also cause elevated TLC and blood counts are also affected by the drugs we take.

Regular blood count tests and most importantly bone marrow biopsies tell the story over time.

[Birgitta-A]

Hi Joytika,
You know some dairy products can have a positive effect on coagulation. I eat 100 g organic hard cheese boild for 1 - 2 minutes in water (to kill mold) because cheese is supposed to contain Vitamine K - good for coagulation. I got the info from another support group when my platelets were very low and they disn't decrease but actually improved a little. We are all different.
Kind regards
Birgitta-A

[JyotikaK]

Hi,

Dad's condition is slightly better than the last time I was here.

His fistula bleeding has stopped although his counts arent that great.. Today's report is 8.3 Hb, 17K Platelet and 3.0 TLC.

But there is a new count on the report Basophils. His Differential leucocyte count is as follows:

Segmented Neutrophils - 38%
Lymphocytes - 43%
Monocytes - 14%
Eosinophils - 1%
Basophils - 3%

And there is 1% Blasts.

He has a lot of nausea and a constant head ache and vomitting feeling which is our main cause of concern right now. Because of the vomitting feeling he is not eating too much and sleeping all day.

But we are all praying for him and I have my faith that he will pull through.

Any insights on the Basophils?? and are these blasts the ones which are referred to in the biopsy?

Praying for all you guys as well.

Take care.

[Neil Cuadra]

I'm glad your Dad has had some improvement.

Basophils are a normal type of white blood cell, usually 0 to 2% of circulating blood. They destroy invading bacteria and viruses. Your Dad's basophils (3%) are only slightly elevated, which is not uncommon with bone marrow problems and can also result from an infection, an allergic reaction, or from drugs he's been given. From your Dad's differential leucocyte counts, I compute his absolute neutrophil count as 1140 ("mild neutropenia").

Yes, blast percentage is one of the results of a bone marrow biopsy and aspirate. Another result is his cytogenetics: a study of his chromosomes. Did they give you cytogenetic results? Those results and blood counts are used for MDS classification. By the numbers your Dad would seem to be in the "Intermediate Risk 1" category but his combination of symptoms make clear why it's hard for you and your Dad's doctors to know whether to use other treatments.

[JyotikaK]

Hi Neil,

Thanks for your kind words. Yes, dad's cytogenetics were checked last year when his MDS was Dx. His chromosomes analysis was normal.

What I didnt understand was why are they showing 1% blasts in his blood report? Isnt that unsual - I understood that you normally can not see the blasts in blood tests but only in the bonemarrow biopsy. That is what worried me a bit.

Anyway. We continue to pray for a miracle.

Jyotika

[Neil Cuadra]

Originally Posted by JyotikaK

What I didnt understand was why are they showing 1% blasts in his blood report? Isnt that unsual - I understood that you normally can not see the blasts in blood tests but only in the bonemarrow biopsy. That is what worried me a bit.

I thought you meant you had the results of a BMB but now I understand that the blast count was from a blood test. Yes, that's worrisome. There should normally be no blasts in peripheral blood. It may be a sign of something wrong or something changing, and certainly worth asking your Dad's doctor about.

[Raj]

Hi Jyotika,

Hope your dad is getting better. I can relate my experience on Vidaza and Ayurveda.

My dad is being treated in India as well for MDS RAEB-II which was diagnosed in Feb-2010. He is currently undergoing his third cycle of Vidaza. It is too early to make a call on how well it is working - so far the results are mixed.

His platelets have risen from 40000 at start of first cycle to 125000 now (at one point it was as low as 12000).

Hb has not stabilized and he still needs red blood cell transfusions - has had about 10 units in the last 4 months.

He is also on alternative medicines in parallel (including Ayurvedic medicines). Unlike Vidaza, there were no formal studies in the alternative medicines to prove their efficacy in treating MDS. So we were reluctant to follow that as the sole treatment plan. Both our allopathic and ayurvedic doctors felt that for the immediate future Vidaza provided the best course of action to prevent the disease from degenerating into leukemia and offer a better quality of life.

Wishing your dad and family the very best and hope he starts to feel better soon.