[krishananth]

Hi Ram

I have sent you my details as a reply to your private message.

Our best wishes to your FIL for a speedy recovery.

Regards
Sandhya

[krishananth]

Hi

This month there has been normalcy with regards to my dad’s tranfusion. He was at 5.5 before and post transfusion his hb count increased to 10 (after 3 red packed cells). His doc asked for Coomb’s cross matching to be done as he has had more than 44 transfusions.

We still have no answer to the reason why his hb count did not increase last time. His haemo told us that this oculd be a one of case but we do not know the exact reason for this.
your responses have really helped us have more information.

my dad is due for his transfusion later this week. Hoping that the post tx increase in my dad’s case continues.

Thanks
Sandhya

[krishananth]

Hi Bergit,

Thanks for your response.

Please can you explain more about the answer you have given. I am still not clear. We would like to know if this will be the trend in further transfusions too or is this a one of situation.

Thanks
Sandhya

[krishananth]

Neil

Sorry abt your hospitalization… really glad to know that your are back..Wishing you a speedy recovery and have a great time.

Warm regards
Sandhya

[krishananth]

Thanks for your response. Appreciate the information you have shared as it is encouraging.

Regards
Sandhya

[krishananth]

Hi All

Thanks for the posting and sharing your experiences. I have also read out this to my dad and hoping that he will consult his doc on Exjade.

He has started Lenalid, Indian version of Lenalodimide which is Revlimid and he is having itching all over. Is this the common reaction of revlimid?

My dad is currently 58 years and has been healthy i.e. used to play a lot now stopped. He has been very active all through and even now is continuing his regular office work and weekends spends time with his grandchildren and also once a month he visits the society which is servicing poor people who have a blood related disorder. He was diagonised for MDS in July 2006 (a year now) and since then been on supportive care. The MDS was classified as MDS/MPD with myelofibrosis. Blasts were 8 – 9%. Platelet counts as low as 6000 just last week. He had a single donor platelets(SDP) but still his counts are 6000. we are wondering if the reading is incorrect and whether the SDP was not proper. We are extermely concerned about his low platelets.
Any suggestions to increase platelets? Has any one had instances where platelet transfusion was done still no increase in count?

[krishananth]

Hi Neil,

Your post was real good. The list of questions you have mentioned would occur only on a timely basis but not all together. I think this is a kind of checklist for people to have to generate questions for their doctors and know more about MDS.

I have one question based on what you had mentioned of “thrombocytopenia -> chances of moving to AML are remote”, why is that so?

I assume thromobocytopenia is related to low platelets. My dad has platelets ranging from 20,000 – 50,000 sometime back but over the last 2 months his count has just been 10000, and now over the last 2 – 3 weeks just 8000. we were all so worried because one of the haemotologist whom we visited said it is dangerously low and he needed platelet transfusion. He also mentioned that the chances of the diease transformation to AML are more. but his regular haemo told us not to worry or go for a platelet transfusion unless and until there is a bleeding from anywhere.

However, his blood count is okays… falls as low as 4.4 every month and after tranfusion of 3 packed cells goes up to 9 – 10.

Thanks
Sandhya

[krishananth]

Hi choijk

Please could you send the link for the MPD newsletter.

My father too has been diagonised for MDS/MPD. Docs say that it is difficult to treat both at the same time and it cannot be dealt with together. However, we would like to know more on this.

Please do send me the link.

Thanks
Sandhya

[krishananth]

Thanks a lot Jack. yes this info will help.

Another opinion required. We are from India. Some of my close relatives feel that getting the initial few dosages of Dacogen in the US will help.
In India, so far we have not heard of this drug and really not sure if by taking this we are/will be falling into trouble.

Please suggest.

Thanks
Sandhya

[krishananth]

Hi

My dad too is transfusion dependent and has had nearly 20 – 25 transfusions by now. he just has a transfusion last Saturday.
earlier he never had chills but last saturday he had chills and the transfusion was stopped for an hour.

just wanted to know if the chills are indicative of non-acceptance of fresh blood or what is the reason for this?

Regards
Sandhya

[krishananth]

Hi patti,

My heartfelt condolences with you and your family.

May the departed soul rest in peace.

Regards
Sandhya

[krishananth]

Karen,

After reading your post, i realized that unknowingly tears rolled down my eyes.

I know it is really so painful to see the person you love and above all Father, who support has always been there whenever your wanted it.

But then i too believe that people who are close to you do not go away after their death. They are always with you both in your mind and heart.

My deep felt condolences to you and your family.

Regards
Sandhya

[krishananth]

eve,

My heartfelt condolences with you and your family.

Regards
Sandhya

[krishananth]

Jim

Thanks a lot for your speedy response.

Rgds
Sandhya

[krishananth]

Jim

Please could you let me know whether you took Danazol with some other medicine. My dad has been asked to take Danazol daily 3 times with procrit on weekly basis.

Regards
Sandhya

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