My dad just diagnosed with MDS. Please read..

[bebop]

those numbers look pretty dang good! woo hoo! congrats!

[mausmish]

Thanks for sharing your great news!

[Steve_F]

I was diagnosed in Jan. 2009. Brother, sister and two of our three kids were tested for match, and both my sister and our oldest son came back 10+. We had the results on the non-matches sooner than the match, so keep your hopes up...you may have a match already and not know it!!!

Had my transplant in March as it was apparent that the MDS was progressing and the fear was that it would progress to treatment resistant AML.

[cathybee1]

That's excellent news...I'm so glad your dad is getting such good care.

[stayinghopeful]

Thank you all for the positive feedback

The nurse just called us and gave us the greatest news ever!! Two of the three siblings are 100% matches!!! I am so excited that I can't stop crying. I called everyone I could imagine to give them the news. The nurse told us that we are going to go ahead with one more cycle of chemo (which will be his 4th one) and then do a BMB. Hopefully, if everything goes well, they'll go ahead with the transplant early next year (Jan). In the meantime, they'll be doing some additional tests to see which of the two is the better donor.

I just couldnt wait to get on here and share the news with you all

[Neil Cuadra]

Wow, that's absolutely fantastic news! There's even a choice!

[bebop]

that is great news!

[mausmish]

Fantastic!

[cathybee1]

yeah!!

[stayinghopeful]

Finally have a date set to start the transplant process for my father. January 15th!! It's right around the corner! Excited, nervous, scared all at the same time.

[mausmish]

Wow, that's good news. I can sure relate to all the feelings you're going through right now. My husband and I were just sitting here discussing the fact that one year ago was the day I got out of the hospital after my transplant. We can't believe how the time has flown by.

[stayinghopeful]

We are here at the hospital for my dad's pre-transplant work. This is his 2nd day and so far so good. He is getting his ATG, steroids and radiation. He felt a bit chilly last night and his fever reached about 102 degrees. Doctor told us that these symptoms are completely normal with the ATG. He just started his ATG for the day, hopefully he holds up a little better today.
He said radiation was a piece of cake, so I was very glad.

Transplant is set for next friday. We are all anxious and excited for it.

[bebop]

this is wonderful news! please keep us posted!

[Scarlet]

My dad is 60 yrs old, and he has had a heart attack before and currently has problems with his kidneys, and he also has MDS. The doctor says that they can't perform the transplant on him because of the weak heart that he has and his kidneys, but I want to know if there are other options, because honestly I want my father to be cured and to be able to live a long life, free of pills and such. Well not completely but still, free of pills for the MDS and transfusions for it also. Please tell me if there are other options.

Thank you!

Scarlet.

[stayinghopeful]

Hi everyone
I have been away from this forum for a long time and wanted to come back to get some advice/support.
Im sure some will remember my story, I hope.
My dad received a bone marrow transplant last Jan from his sister.
Since then, he has been on numerous chemos, spent months in the hospital and had 2 DLIs.
He currently is not doing so well. Doctors call his cancer "aggressive".
I have never seen my dad so weak, tired and miserable.
He currently has a blast percentage of 63%
His white blood cells are up to 19 (highest they have ever been)
He has officially gotten a Leukemia disgnosis.

For the last week, he has been having a very high fever. It has been been in the 100-104 range. Yes, It reached 104.1..

He is taking a chemo pilled known as hydroxyurea 500mg 4x a day.
It is really putting a toll on him.

We are waiting to meet with his doctor on the 10th of this month to discuss the next step. We may even try another BMT cause his brother is also a 100% match.

Any feedback/advice would be appreciated.
We are trying to keep him in high hopes, but it is so difficult.

[Birgitta-A]

Wonderful response Melanie!
Kind regards
Birgitta-A

[bebop]

stayinghopeful I am sorry he has progressed into aml. does the dr think another bmt at this time will work? I pray it does! I really don't know much about the aml and another bmt but my prayers are with you and your family.

[stayinghopeful]

Thanks for the prayers. We have not yet discussed another BMT with the dr yet. I hope to ask him about it on the 10th when we meet with him.
I hope it is an option for him.

[billyb]

Stayinghopeful, it can become overwhelming at times, ya'll our in our thoughts and prayers.

[Birgitta-A]

Dear stayinghopeful,
I am sorry for my post Jan 2 - as you understood it was for another member.

If your father can manage a second SCT it is probably his only chance. Hopefully he is now getting effective treatment for the fever.
Kind regards
Birgitta-A

[Heather8773]

I will keep y'all in my prayers. When ever you have questions do not be afraid to contact your drs office. You are not limited to just your appointment dates. I have read over most of your posts but I am new to this site so forgive me but i was wondering have you seeked advise from other specialist as well now that things have changed?

I wish I could give you more advise. I truly hope things improve. A friend sent me this and it made us feel better. I hope it does for you. Philippians 4:6-8 then Joshua 1:9 and a personal favorite Philippians 4:13

[Lori Patrick]

Hang in there. The waiting is not fun. I found my walk through MDS tolerable through prayer and my family (including my husband of 6 months). I am going to be 2 years post transplant this Friday! I was where you were and am now here. Keep your spirits as high as possible and leave it in God's hand. You can look at my caringbridge site listed below for a taste of that I went through. Again, it will be 2 years!! I only have graft vs. host of the skin that I am dealing with now. Much better than what it could have been. Blessings, Lori

[Rainer A Kohl]

My husband just became a member of this forum, although he was dx already in 2007 (he was 65). He was very ill and we nearly lost him because of the unforgivable misdiagnosis of his then physician and other so-called specialists. . . It was terrible to see him suffer! But then God sent us the miracle of a superb hematologist who immediately put him on vidaza and within weeks he made a fantastic recovery. He was on Vidaza for 12 months every 4 weeks - then went into remission, i.e. his monthly blood tests showed a perfect balance! Unfortunately he keep secretly smoking which obviously caused a relapse, so
he went back on chemo since March 2012 - now phase-stretched to 8 weekly
5-day treatments with dacogen which he responds to better. The only side effects he has (after the 5-day treatments) is constipation, some breathlessness and dizziness - for about a week or so (the constipation we treat with prune juice; works the best). His metabolism seems a little delicate but this could be age related.
Since receiving treatment, he is like a rejuvenated person! Can you believe even his hair started growing again on his bald patch? He seems to heal quicker when he gets a 'flu or cuts himself (he's an artist and sculptor). I make sure he eats well (not too much red meat), gets enough stimulation, rest and exercise, and leads a full life. (And he definitely gave up smoking!)
The reason I'm relating all this to you is to give you much more hope that your dad will cope very well in the future! Believe me, these treatments are life-savers! Our family cannot express our gratefulness and relief enough for our 'Papi' to have received this extended good health and life time! Take heart and continue to give your dad all the support and love - which includes smiles and laughter! Mami Hedy

[Janinne G.]

My dad was diagnosed yesterday with advanced MDS. How is your dad doing today? Does anyone know of good doctor ear Joliet, Illinois?

[bob weinberg]

Dear Stayinghopeful:

Is your Dad being treated at a MDS Center of Excellence? You need to know the IPSS-R score (Internation Prognostic Scoring System - Revised). Key components are what percentage of his marrow is in the form of blasts (unmatured blood cells)? Does he have any chromosome abnormalities? Some are benign and some are signs of higher risk. The Hgb, WBC and platelets in a CBC (complete blood count) do not tell the actual risk. If they are putting him on chemo (other than Vidaza or Revlimid) at this point, I would assume that his IPSS-R score is higher risk rather than lower risk. But you should find out what it is and what factors are causing that.

There is an absolutely incredible on-line and pdf book called Building Blocks of Hope (BB of H) created by members of the MDS Foundation board. It is quite detailed and should be must reading for all MDS patients and caregivers. It can be found in both versions at http://www.mds-foundation.org/. You can find the BB of H link in one of the circulating messages at the top of the home page. You can also get a list of Centers of Excellence on that website

BB of H is one of the best resources out there.