[drinaldi]

i am so very sorry to hear of your brother’s passing. it is heartbreaking to hear that, after going through the bmt and all the difficulties involved with it, he succumbed to this horrendous disease.

There really are no words of comfort right now. Losing a brother at such a young age is not easy to accept. Please find comfort in the fact that you were there for him when he needed you most.

My prayers and thoughts are with you tonight. his suffering is over.

diane

[drinaldi]

There are no words.

My husband died in a similar situation after one week of dacogen treatment. It has been four very hard months. My heart breaks for you and your family and my prayers will be with you.

diane

[drinaldi]

my intent was neither to upset you nor to have you leave this forum. this is where you belong and we will willingly be here to support you. i was the caregiver and, as close as i was to the disease, i cannot speak as one who had it. my frustration came with wanting you to learn from the wisdom here and combine it with the natural spunk you possess. i believe the combination of the two will bring you success in the fight you have ahead.

your age and health give you a wonderful advantage with mds. there are many success stories here and your doctors seem to be guiding you in the right direction. it’s frightening but it can be done.

each and every one of us was in shock when we first joined and most of us had never heard of these blood disorders. but this is the place we belong. the information is invaluable and the support system unwavering.

stay with us. you belong here. hopefully you will eventually be cured and move on. but right now, we are here for you.

Prayers and love…….

[drinaldi]

Cathie

I have tried not to respond to some of your posts because I know how difficult it is to accept the reality of your condition. However, I am insulted by your last comments and feel I must reply.

My husband was a strong, healthy man who was diagnosed during a routine blood test. His last eighteen months were spent accepting the diagnosis and the lifestyle changes it involved. His time at the end included medical treatments as well as transfusions on an almost daily basis. It was not of his choosing, yet he did so hoping it would extend the life he loved. Although he was willing to try anything he certainly did not deny the seriousness of his disease.

He used common sense in his approach to avoiding germs but, at the same time, did not isolate himself from family, friends and eight wonderful grandchildren. To compare necessary precautions to carrying “around a leper’s bell” is beyond comprehension to me and others on this site who are mature enough to follow precautionary guidelines.

He died differently than he lived. His voice did become weaker and his head held not quite so high. yet he was the strongest man I have ever known.

He was loved more than can be expressed here and has been missed every moment since.

Think before you post. Everyone here is vulnerable. We are not here by choice.

I wish you the best.

[drinaldi]

bety..

my husband died on may 8th of this year also from internal bleeding. he was 67 years old and we were married for 42 years. his condition was a combination of mds and mpd. no matter what we tried, we could not control his counts. they were preparing him for a cord transplant, but everything just ended so quickly.

although there were many times i read of someone losing their mate, there is no way to comprehend what this really means. i have no words of comfort but, from reading your posts, i know what a fortunate man your husband was. you lovingly did everything you could for him. these diseases rob us of control.

may your memories comfort you. my prayers are with you.

[drinaldi]

hi….my husband was on five rounds of vidaza with no significant side effects (did not have any hair loss — just some mild nausea). unfortunatly, he was transfusion dependent throughout and has been switched to dacogen this month.

he has a combination mds/mpd with very high white counts (now 140,000). vidaza did lower those to 4,000 but brought down his red and platelets (usually down to 10). after the fifth round of vidaza his white spiked to 80,000 so they stopped treatment. it was really easily tolerated and i hope you have the same experience and if it works, it is great.

he is now having major side effects from the dacogen and was hospitalized for five days. this began immediately after his five-day cycle and we still have not reached the nadir point. his original dx was on 11/07 and was able to "watch and wait" for over a year.

[drinaldi]

my husband who is 68 has a combination diagnosis of mds/mpd and his original white blood count (on a rountine physical in 2007) was 65,000. they immediately hospitalized him and diagnosed him with leukemia but after the bmb changed it to mds/mpd. he was on "watch and wait" for one year. his white count remained between 40,000-60,000.

twelve months later his white spiked to 128,000 and the second bmb showed no progression of the disease. he was placed on hydroxurea for a two month period which caused a severe nose infection resulting in mrsa. he healed perfectly and has not had a recurrence.

he was then put on vidaza for six months which lowered his white count to 4,000 but also brought both his platelets and red counts down (red was as low as 6.2 and platelets are now at 10). this month, while on vidaza, his white spiked to 133,000 and we are now trying dacogen. another bmb showed no progression. the next step may be a mini transplant.

during it all, he has not caught any bacterial infections or viruses (with 8 gradchildren constantly around). he is usually fatigued but still able to get around at a slower pace. he had constant red transfusions while on vidaza… also two or three platelet transfusion.

sorry to be so long, but i wanted you to know that the spikes in white counts do not always mean leukemia.

my prayers are with you and your mom. you are not alone. keep us updated.

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