RAEB w/Chromosome 7

[JaniceR]

Hello to everyone: My head is spinning. We just got back from NY Presbyterian with Dr. Eric Feldman. His suggestion for my dad is to put him on Trisenox and Ara-C for two weeks. It’s a clinical trial, but he feels that with his type of MDS, in 6 months he could progress rapidly to acute leukemia and downward. Since he’s so healthy, vibrant and active, he feels forcing him into remission and then doing a stem cell transplant would be my dad’s best option for “cure.” By the way, dad’s been eating one whole pineapple a day, and his platelets have gone from 27,000 to 39,000 in less than one week. Does anyone out there have anything encouraging about this clinical trial and has anyone else been dx with chromosome 7 abnormality? Should we go for the trial… or just try Vidaza?

[lynette]

Janice,
My Mom is on the same trial. She is doing well and in remission. The 2 weeks in the hospital were, at times, difficult. She did not want to be 2 hours away from her family. I stayed w/ her a few nights, and my Dad took a hotel room several times. The nurses were very familiar w/ the protocol, which is a plus. There have been very encouraging results from this trial. The arsenic had a few side effects: numbness in fingers and toes;rapid heart rate; mild nausea. My Mom was not a candidate for Vidaza.
It is a difficult decision, but since my Mom had progressed to AML, we were running out of options.
Good luck.
Lynette

[JaniceR]

Thanks lynette. I hope it works for my dad as well. Do you know if it doesn’t work, can it damage any other organ, i.e., heart, lungs, liver. If this trial doe not help him, can it actually hurt him?

[eve]

janice

it is a tough decision to make

did they tell you the risks of the stem cell transplant

what ever you decide i wish your dad good luck

eve

[lynette]

Hi Janice,
Generally speaking, the Arsenic is tolerated very well. However, it can cause a temporary condition called “prolonged q-t syndrome” which is a heart rhythm problem. The problem is reversed(if it occurs) once the Arsenic is stopped. It can cause fluid retention which my Mom did have both times. If the heart and kidneys are healthy to begin with, there is usually no residual problem. It can cause temporary kidney problems, but my Mom only has 1 kidney, and she had no kidney problems at all. She was observed very closely because of this.
I know how difficult this is for you, it is not without risks. I will keep you in my thoughts and prayers.
Lynette

[gemloyear]

Hi Janice, My husband had been dx with Raeb-1 w/Chromosome7 & 8 abnormalities in Nov., by Dec. he was showing a few more blasts.By Jan. it had progressed to AML.If he is other wise healthy it might be worth taking the chance with the chemo. I wish my husband could do it, but he has many other health issues and is older than your Dad. I’m leary of the SCT but you see lynette’s Mom is in remission with out a SCT. Glen has COPD so he could not stand the fluid retention in his lungs as he is prone to pneumonia. Good luck with your decision.Prayers for your Dad.
Ellie

[seekay]

Dear Janice,

Arsenic is poison, if I am not mistaken. I don’t believe that the body fully excretes these drugs once ingested. I think that residues of them remain in the body, putting further stress on the system.

Have you considered a nontoxic alternative first? What would be the harm in that?

CK

[JaniceR]

To everyone: My dad had his second dose of the arsenic/ara-c last night. He was eating dinner while receiving it. After the two-hour drip and dinner, he went for a walk and then to sleep. He hasn’t felt any reaction or any different whatsoever after his first two treatments. His appetite is robust as ever (he’ll probably be the only one to GAIN weight during chemo) and he says the food at NYP is good.. compared to mom’s cooking, I guess 😉 just kidding. This morning he has a slight fever, so now I’m nervous. He’s still cutting up making everyone laugh. Today’s another day.

[Suzanne]

Most of the drugs used for cancer are a form of poison. They are designed to kill cells and hopefully killing the bad cells outweighs whatever damage they do to other cells and leaves the body strong enough to to recover from that damage. Luckily they seem to know a lot about how to target the poison and how to help protect from peripheral damage.Don’t misunderstand me, I am all for doing as much naturally as possible and strengthening the body as much as possible but the development and use of some of these drugs are making it so some of us are alive instead of dead.From what I have read and experienced, anybody with Raeb w/ monosomy 7 & 15 % blasts would be reasonable to be looking at using drugs to stop the disease before it gets out of control.

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