No Luck At University of Penn

[cherylm]

Hi All,

I’ve posted here before a few times…my 70 yr old dad was diagnosed with RAEB I in May; tried a clinical with Vidaza + MS275. Completed 4 rounds; didn’t work. MDS progressed to RAEB II. Onc advised no ohter treatment options locally and suggested looking outside the area. I contacted U of P and saw Dr. Salena Luger. Unfortunatley she had nothing to offer either and suggested trying to find another clinical somewhere. I’ve come across two 1 at Penn State Cancer Institute at Hershey Med Ctr – Aflibercept in treating MDS, a phase II study. And 1 at Cornell Lonfarnib vs Placebo in Subjects with MDS. Anyone have any info on either???? I have calls into both as it looks like my dad is progressing quickly. 3% blasts in May and 13% now. Any input, ideas, suggestions please……..Cheryl. Can reply her or email directly. Thanks everyone…….

[JaneP]

Have you tried Duke in North Carolina? You may want to give them a call.

Jane P.

[lynette]

Hi Cheryl
Is Cornell in NYC still doing the Arsenic and ARA-C trial?? My Mother was on that, and she did achieve a remission for about 10 months. Her blasts were up to 39% when she began the trial. She was a young 74, with no other health problems.

[cherylm]

Lynette,

I don’t know if they are still offering that one, but I understand they are going to start a new trial with Clorfarabine. I’m making an appointment with Dr. Eric Feldman at Cornell NYC to see about that. I have been in touch with a few doctors at Anderson TX and they sadi they’ve been doing a clinical with Clorfarabine and have had a 50% success rate. Thanks for responding!! I’m at this point looking into all possibilities. Cheryl

[lynette]

Cheryl,
Dr. Feldman was my Mother’s doctor. He was very informative, honest, and he gave her hope. I think that you will like him. Just be prepared to WAIT!!.
Take care,
Lynette

[jaxem]

cheryl
been reading this topic about your dad. clorfarabine interests me but it usually is combined with the classical chemo drug for leukemia ARA-C. when you say “clinical”, you mean it is a trial. I don’t know about you but trials scare me. there are other chemo protocols available that aren’t trials but I can understand the urgency if your dad’s disease is rapidly progressing. since ms-275 & dacogen didn’t do anything, any consideration in trying other non-trial protocols such as using vidaza or dacogen and valproic acid? since MD Anderson has many mds trials going, I’d be inclined to contact someone there for an opinion.

[cherylm]

Hi Jack,

I too am nervous about clincal trials but Anderson is where I went for their opinion. I exchanged emails with Drs. Kantarjian ans Garcia-Manero. They are both vry involved in the clinical trials there. They were in agreement that the clorfarabine was the next best step in treatment. But it still worries me. The clinical we hope to get in is at Weil Cornell NYC. I have a call into Dr. Feldman there to see what he has to say. The onc here (noretheast pa) said she would be willing to try a progressive dosing of dacogen but since the vidza failed she thinks the odds are against it working. So very confusing!!

Cheryl

[jaxem]

cheryl
it seems most trials on cutting edge are coming out of Anderson & Dr. Kantarjian. Discussion with our hematol points to the clorfarabine/ara-C combo as next step if dacogen + HDAC combo doesn’t work. Personally, I’m a little afraid of Anderson to get treatment done there but their trial work is worth looking at. also, several people here said that vidaza/dacogen demeth agents didn’t work but when an HDAC was added, response was noted. You might want to searchhere. good luck on finding something.

[cherylm]

Hey Jack,

I’ll post with what I find out as we proceed. We have a 12/20 appointment with Dr. Eric Feldman at Weil Cornell. He called me on Monday (11/26) and we discussed my dad’s case and the upcoming oral clorfarabine trial. We are going to try it. I read you recent post about your wife, I feel bad for the let down. Good luck with the dacogen. I really hope it works. Like I said, I’ll keep you posted on the clorfarabine, at least if you end up having to go that route, you’ll have a little background info.

Cheryl

[jaxem]

cheryl
thanks & good luck with the clorfarabine. Keep me in the loop! I’m anxious to keep track about what you are doing.

[cherylm]

Hi Jack,

I’ve been off the boards for a few days. I can’t wait until Dec 20th and the appointment with Dr. Feldman. It seems like forever away when you are waiting. My dad has had some tough days recently. The fatigue and breathlessness are really wearing on him. Plus we are having super cold weather and the cold air doesn’t help. I’m hoping to get him on some oxygen support today. I have a call into to his doctor to get it set up. Hope your wife is doing ok. Positive thoughts, right? I’ll let you know how we make out…good or bad. Cheryl

[Mary4Mike]

Hello Cheryl,

I am sorry to hear your dad isn’t feeling well.

I would be interested to know if your dad’s doctor does give him oxygen. I asked our hema about this and he said it wouldn’t help. Please let me know if they give it to him AND if it helps. I hope so!

Thanks and best wishes.

[cherylm]

Hi Mary,

Ended up taking my dad to the ER yesterday, early morning. He was so breathless he could hardly make it 10 steps without needing to rest. Seems he’s got too much fluid so they have him now on a diuretic and yes, they are sending him home with oxygen. I will let you know if he does better with it than he was without. Looks like he is coming home tomorrow which is nice becasue it is his 70th birthday!

[Mary4Mike]

Cherylm,

First off, Happy Birthday to your dad. I pray for better things this year for him:).

I hope the diuretic and oxygen relieve his symptoms. My husband’s breathlessness is due to low HGB and this was why the doc said oxygen wouldn’t work. He said there aren’t enough RBC to carry the oxygen where it is needed.

Let us know how things go.

[cherylm]

Hi Mary,

Thanks for the Birthday wishes…I will pass them along as it looks like my dad will be coming home today! A great present. We found out a few things during this hospital stay which no one ever bothered to tell us before. For as many chest exrays and echos my dad has had recently, this was the first time (new heart doc)we were told my dad’s lungs have a severly lowered capacity as a result of his past heavy smoking. He also had 10 lbs of fluid build up which made things way worse. So even though the breathlessness from the low rbc won’t be helped too much with the oxygen, it will help with the lung isues. I hope that makes sense. Have you heard of any one else with fluid issues from being transfused so frequently?? I can’t believe no one in the oncs office didn’t pick up on it…..urghhhhh

Cheryl

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