FINALLY have appointment at Moffitt

[Al's Wife]

Well, we've been trying to find alternatives since getting the news that Al's blasts were now at 10-15% and this disqualified him from the trial at NIH in Bethesda. So I've spent the last week going back and forth between the insurance company and Moffitt, where we have decided to seek further treatment. I won't go into all the details, but suffice it to say, it has been another NIGHTMARE!
However, today we finally were able to set an appointment for Moffitt in Tampa and will be going there in July. Not sure exactly what treatment we will have, as we want to look at all options and see what the doctor thinks might be most helpful.
Received Al's BMB from NIH yesterday and it was the most detailed he has ever had. His folate levels and B12 levels were off the chart. I mean SUPER high. Does this mean it has turned into leukemia? Does anyone know?
I'm glad we're finally moving forward again as our Watch and Wait didn't last very long.
I'm just hoping and praying that we will find something that will help him.
God bless all of you for your kind words and support. I don't know where I would be without this forum.

[Birgitta-A]

Hi Linda,
Good with an appointment for Moffitt ! If you look at clin trials gov for Moffitt MDS you will find many studies. If you continue to studies recruiting patients you will find 12 trials and among them a study of Promacta for high risk MDS patients: http://clinicaltrials.gov/ct2/show/N...cr=Open&rank=2,

Hopefully Al will be able to participate in that trial!

Since I have been taking B12 since dx my B12 is also off the chart - more than 1100. I don't know how high my folate level is. You know we should not take folic acid if the level is very high because folic acid is DNA methylating - has opposit effect than for example Vidaza that decreases DNA methylation.
Kind regards
Birgitta-A

[Sally C]

Hi Linda,
I am so glad you and Al have an appointment at Moffitt. I really believe your NIH visit was meant to be as it seems to have given you some valuable information.
Please keep us posted. Prayers being sent up for you both!
God Bless,
Sally

[Anne Yeomans]

i also have high risks mds and are going to moffitt. My onclogist in wbp and moffitt have told me, that it is not full blown leukemia until your blast are at 20%. When I was diagnosed mine were at 15% with 5q, now down to 5% in marrow and none in blood. it took the combo of 5dys vidaza and 21dys revlimid. which is a trail treatment. You are going to a good place. Hope things go well. Hang in there it's the beginning steps that are the hardest. Unfort. this illness has a mind of it's own.

Anneg
God Bless

[Hopeful]

Originally Posted by Al's Wife

Received Al's BMB from NIH yesterday and it was the most detailed he has ever had. His folate levels and B12 levels were off the chart. I mean SUPER high. Does this mean it has turned into leukemia? Does anyone know?
.

When my doctors were working on a diagnosis for me, my B12 came back over 1100. Nothing was said about it. So, I'm not sure what a high B12 means, but I didn't have leukemia. I also wasn't taking any supplements at the time.

[milliken2]

Linda;

It was me who made the appointment at H. Lee Moffitt Cancer center for Earl, since I was sure there was something our Docs here were missing. We had our appointment with Dr. Jeffrey Lancet - very informative. They did a BMB there under anesthesia, and Earl had the least pain ever from one. We saw the Dr. just before we returned to PA - and this is where we first heard that he positively had MDS. He said to have our oncologist here start treatment, since they would not be able to follow Earl's progress or decline there. I liked him, and when we had our appointment with Dr. Sekeres at the Cleveland Clinic, he said he was very familiar with Dr. Lancet - in fact, they each have the other's home and cell numbers.
It is nice there in that they do not charge you for the valet parking (of course we tipped the valet) and the lab and hema/onc office is on the same floor - but if Al needs a wheelchair - there are plenty available, and many people offer to help. Good Luck to you both.
Beth

[kris]

Linda, you and Al both will be treated with respect at Moffitt. Everyone is very informative and helpful.
My husband has been a Moffitt patient the past 15 months. He had already had a successfull 25 month run on Vidaza. Unfortunately when it stopped working Rick developed all three cytopenias, GI bleed and lung infection. So he was very critical. They still were very positive assisted in his treatment till he was strong enough for a HSCT from his sister who wasa 10/10 match.
SCT for MDS is the only hope for a cure. He/We are 8 months post transplant. It is a journey of opportunity and my husband reminds me daily that life is an adventure to be lived!
The Oncology /hemotology team is exceptional and work hand in hand with the BMT team. If there is a clinical trial Al is a canidate for they will be able to advise you.
Keep the faith, we are a community routing for each other's sucess.
feel free to contact me.
kris