MDS in India
Came across this wonderful forum while browsing for more information on MDS. Very Happy to find this place which helps shed more light into this disease.
My dad, 68 years, located in Chennai, India was dx earlier this week. We are awaiting the cytogenetics reports.
The prelim. dx for my dad is MDS with RAEB-2 - BMB reveals blasts < 10% with Auer rods and micromegakaryocytes, platelets just at or below normal, Neutrophils 16%.
He is a diabetic (30 years - type-2 which he kept under great control throughout the years with no insulin injection requirement). He has had no other previous problems and so his fatigue and lethargy three weeks back were a surprise to us; He never stops his daily exercise routine and when he did not feel like sticking to that routine, it was a give-away something was wrong. Initial tests revealed anaemia with low RBC and Hgb of 7.4 - which then led to further tests and now the dx of MDS !
So far the only treatment has been one dose of vitamin B-12 injection and he has started taking insulin injections as his blood sugar levels became erratic (the blood sugar has stabilized for now - he continues his insulin). We have been referred to an oncologist and have an appointment tomorrow to determine the next course of action.
I would love to hear back from anyone who has ideas on doctors/hospitals in India who specialize in MDS. This website identifies a good number of hospitals/doctors here in the USA, but this disease still seems relatively obscure in India. MDS foundation website lists Tata Memorial Hospital, Mumbai as a Center of Excellence. Wonder if anyone has any info to share in this regard.
I wish everyone and their family in this forum the very best and pray that your fight against this disease may result in a complete and permanent cure.
My husband is also diagnosed with raeb-2. He has been on Vidaza for 15 months with good results. I wish your Father and you and your family happy wishes.
Rose, Here's wishing your husband continued improvement. That is very encouraging indeed.
I had heard that RAEB-2 has much lower chances of remission and imminent BMT was one of the very few mechanisms available. Given my dad's age, it also appears that an allogenic transplant is the only BMT option he might have available.
However the results of Vidazo treatment on your husband is positive and gives us hope as well. Thanks for the message.
Are there any folks here undergoing chemotherapy who are also diabetic. I would like to hear any advise there is on this topic. Thanks.
Forum member kishore_nawani's father is also in India and has MDS. See this thread: Father has MDS RAEB 2 Please Help.
You can search these forums for the word "diabetes" and find a number of comments about it. We've heard stories of diabetic patients taking chemotherapy drugs, including the husband of forum member ann and the father of forum member Marixyz.
Forum member Alex, who had a stem cell transplant for aplastic anemia, was apparently our first forum member from India. See this thread: I'm still here! We don't know of an MDS support group in India but there's a Yahoo! health group for the Aplastic Anemia Association of India and perhaps it would be worth contacting them to ask if there's a similar group for MDS.
Thank you for the pointers Neil.
My dad received 2 units PRBC 7 days back. The Hgb climbed from 6.4 to 7.4 as of yesterday. The platelets however dropped from 137 to 105 over that period. He still seems week despite the transfusion. We have another appt. with the oncologist tomorrow.
The cytogenetics report came back last week and the oncologist mentioned that there were no chromosomal abnormalities found - supposedly a good news ?
That's very good news.
With his blasts < 10% he's right on the border between RAEB-1 and RAEB-2. The cutoff at 10% is rather arbitrary but both are serious. When he gets his next bone marrow biopsy and aspiration his blast count will be one of the most important measures. Let's hope there will again be no chromosomal abnormalities.
Meanwhile I suggest that you keep track of your dad's blood counts each time they test them. One-time fluctuations aren't as important as the longer-term trends.
Please let us know how it goes and whether the doctor decides that any other treatment is appropriate.
Thanks for the tip. I have started a spreadsheet to capture his blood counts. In addition since he is diabetic we are capturing his blood sugar levels.
My dad had his second PRBC transfusion (2 more units) on Tuesday. He had a severe shivering reaction and temperature (Pyrogen ?), which was brought under control.
The doctor has ordered serum EPO, CBC, iron and other microbiology tests for this week.
A bone marrow biopsy looks quite likely for next week; flow cytometry and cytogenetics are likely as well. I learnt there is a FISH test - should I be asking the doctor about that test as well ? Apparently my dad has only had a "traditional" cytogenetics study so far. I wonder if the FISH test is part of the normal cytogenetics process in US and UK ?
Due to signs of infection where he had severe shivering and fever for 4 days straight now - he has been admitted at CMC Vellore hospital and is in IV antibiotics.
Apparently such fever is also signs of MDS progression. A blood culture has been ordered to determine source of infection. If it is not bacteria he would have to do another BMB.
The doctors here have said no FISH test in this case and conventional cytogenetics would only be performed. My father also has a long standing dental infection which would require extraction of a teeth. But his platets count has now dropped to 33000. Hb is now at 9.7.
While your dad is in the hospital his blood counts will probably be monitored daily. I'm not sure why they think an infection is a sign of progression of MDS but it's certainly a common MDS symptom since a low white count makes patients more susceptible to infections.
The measure used to judge the risk of infection is the Absolute Neutrophil Count (ANC), which is computed from the white cell count (WBC) and a white cell analysis called a "differential." You might want to ask if your dad's ANC has been computed.
Thank you for your input.
His WBC is at 10,700 and differntials are normal. It is his platelets and Hb which is going down. The doctor feels his ability to fight infection still exists as his WBC counts seem to be responding well. However he has anyway been put on a high dose of antibiotics along with paracetamol.
The doctor tells me that once the pathology reports come back and reconfirms his belief that this is indeed MDS and his fever subsides, my dad will be started on a palliative treatment course - likely Vidaza. The doctor has ruled out performing a Stem Cell Transplant. I wonder if patients > 65 years of age in the US/UK do undergo SCT.
My prayers and thoughts go out to everyone fighting this disease. I met a 30 year young patient in the ward and he is on Vidaza currently awaiting his SCT. Hope he finds his donor match quickly and can make progress with his life.
An update -
After one unit PRBC transfusion last night, started on Vidaza this morning.
Counts prior to Vidaza (after PRBC transfusion) this morning:
Hgb 9.9, WBC: 10,900, Neutrophils 85%, Platelets: 44,000
The only side effect so far was severe nausea. After an hour of turmoil he was administered an anti-nausea injection which took immediate effect. So far throughout the day no other side effects - have been told that it would be around day 5 when we could expect his counts to begin dropping.
This drug is mighty expensive here in India - 6600$ for one cycle (7 days) - just the drug cost. Need to soon find this drug cheaper as there is no insurance cover here. This sure is a rich man's disease ! thank god for the hope though.
MDS Treatments in India
Raj - I am curious to know how your dad is doing.
My FIL in India (69 yrs) was diagnosed with MDS (8% blasts) in July 2011. He was put on Cyclosporin and Thalidomide from Sept 2011. We chose this drug therapy over ATG - since we thought ATG was an extreme form of therapy. He seemed to be responding well to it - He needed 2 units of PRBC per month and his Hb hovered around 6. The last blood count however was a Hb of 4.
Our doctor suggests vidaza therapy which sounds no better than ATG.
Did your dad go straight to vidaza therapy or was he offered atg therapy first? Did any of his docs (or any doc in India) suggest that BMT is a good option at that age?
We hate having to switch him back and forth - but pray that he is always getting the best of all options.
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