[JaniceR]

So now… the Dr. at Morristown Memorial is saying they can’t get Decitabine in time for him to start on Monday; yet it’s available at Hackensack on a clinical trial. I don’t understand why my father just can’t start his treatment at Hackensack and when it comes available in Morristown transfer over. It’s been FDA approved so what’s the problem? We met a doctor from Hackensack last weekend and he said all the area hospitals work so closely together, they help each other out. So the Dr. from Morristown can’t borrow some from Hackensack and replace it when they get it in?

[JaniceR]

thanks patti, kristy and lynette… I’ll keep you posted as to how the decitibine works and if the B-6 helps him at all.

[JaniceR]

Hi Pierre: My dad is the other one on the clinical trial of trisenox and ara-c like lynette’s mom. Lynette has been our rock. She is full of answers and support. My dad is now on his second cycle. The first cycle he had no reaction or side-effects; however, his blasts are still at 15% and none have gone into the blood (good). The doctor told him that he’s seen it happen where the blasts don’t go down significantly in round one, but after round two they see a drop and/or remission…still hoping. The doctor’s at NYP gave my father the option of doing the clinical trial in New York or staying at home and going to our local hospital for Vidaza. We chose the more aggressive approach with the best chance for remission. We were told the Vidaza would only be a maintenance program until it progressed to AML. I second guess myself everyday on whether we made the right choice and we won’t know for sure until he has his second biopsy after March 12. Good luck to you and your mom!

[JaniceR]

OMG Esme: I don’t know what to say. I am so sad for you and your family. God bless you.

[JaniceR]

Thanks Lynette! I feel better now that I know that’s what’s to be expected. He has been putting warm compresses on it and the doctors said that it IS getting better. Thanks again.

[JaniceR]

Hi everyone: I went to see my dad today at NYP. His arm is really swollen and red and it hurts him. They are giving him antibiotics. His BMB has been switched to Monday instead of today… I guess they want to clear up the infection first. What I’m worried about is that even though his is no longer on chemo, his blood counts keep going down a bit each day. Is this normal?

[JaniceR]

Esme, Lynette, Caroline: Thank you all for your thoughts, prayers and blessings. I’ll keep you posted. And all my best to all of you and yours as well!

[JaniceR]

PS..My dad sees Dr. Feldman at NYP Weill Cornell. He is doing the same arsenic and ara-C clinical trial that Lynette’s mom did that put her into remission. We are hoping for the same results (remission) as Lynette’s mom; but we won’t know until next week when he goes for the bone marrow biopsy. I e-mailed Dr. Lewis Silverman (lewis.silverman@mssm.edu) and got an immediate response from him… and we are not even a patient of his! He’s at Mt.Sinai and I hear he’s also great. I also hear great things about Dr. Nimon @ Memorial Sloan Kettering. Get ALL the opinions you can so you can make an informed decision and a fast one! They told my father that his type of MDS will progress to acute leukemia very rapidly and that we could “just wait” and go with the treatments for AML… but it is much wiser to “head it off at the pass” and stop the progression. Make sure to stay completely away from ALL alcohol… not one drop! All alchohol interferes with bone marrow operation! Also, eat lots and lots of fruits and tons of vegetables. One whole pineapple a day got my father’s platelets up ALOT… it really helps, though I don’t think the drs. and nurses believe it yet. And… a gallon of distilled/filtered water a day! Flush out those toxins!

[JaniceR]

Ron, my Dad will be 72 in July with RAEB and chromosome 7 abnormality. He’s at NYP Weill Cornell Medical Center in New York City where he’s on arsenic and ara-c clinical trial. His first doctor told him to go on azacitidine, but the specialist said results are much better with the arsenic treatment which he could only get at NYP right now. His roomate is 81 and is receiving Zarnestra. Just because you are 72 doesn’t necessarily mean there’s no options for you. An MDS Center of Excellence can give you all the treatment options. Good Luck.

[JaniceR]

Pierre: One more thing… make sure she stays completely away from ALL alcohol… not one drop! I know full well how us French and German decendants love our wine and beer, but any and all alchohol interferes with bone marrow operation! If I didn’t ask the doctors about it, I still wonder if they would’ve told me. Also, have her eat lots and lots of fruits and tons of vegetables. One whole pineapple a day got my father’s platelets up ALOT… it really helps, though I don’t think the drs. and nurses believe it yet. And… a gallon of distilled/filtered water a day! Flush out those toxins!

[JaniceR]

Hi Pierre: My dad also sees Dr. Feldman at NYP Weill Cornell. He is doing the same arsenic and ara-C clinical trial that Lynette’s mom did that put her into remission. Week 2 and NO side-effects so far. He goes home Friday! He thinks the hospital and staff are wonderful and so is the food… gained 10 pounds (hopefully water-weight). We are hoping for the same results (remission) as Lynette’s mom; but we won’t know until next week when he goes for the bone marrow biopsy. He also has RAEB – 15% blast with Chromosome-7 abnormality. I e-mailed Dr. Lewis Silverman (lewis.silverman@mssm.edu) and got an immediate response from him… and we are not even a patient of his! He’s at Mt.Sinai and I hear he’s also great. I also hear great things about Memorial Sloan Kettering. Get ALL the opinions you can so you can make an informed decision and a fast one! They told my father that his type of MDS will progress to acute leukemia very rapidly and that we could “just wait” and go with the treatments for AML… but it is much wiser to “head it off at the pass” and stop the progression. Good Luck… always have hope!

[JaniceR]

Hi Simon: My dad just finished week one of a clinical trial at New York Presbyterian Weill Cornell Medical Center. He has RAEB – 15% blasts and the chromosome 7 deficiency that you have. He’s on arsenic and ara-c.. two weeks on, two weeks off. Lynette’s mom did the same trial and is now in remission…same doctor at NYP. The chromosome 7 abnormality makes you drug resistant and that’s why we opted for the arsenic… which is supposedly the strongest and used for acute leukemia patients. He has not had any side effects from it whatsoever. We are hoping and praying that it’s working and doing what it’s supposed to be doing, but we won’t know for certain until they do the bone marrow biopsy after the third week sometime. His blood counts are reacting the way they should, so it’s killing the good… let’s just hope it’s also killing the bad. I heard that Vidaza is an option, but it’s just not as strong and doesn’t have as good results as the arsenic & ara-c. I also read about the telintra.. http://www.telik.com that’s the trial going on in Texas, I believe. Sign up for google alerts and enter MDS high-risk or myelodysplastic syndrom high-risk and you’ll get up to the minute ground-breaking news and the latest trials. All my best, and good luck.
Janice

[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.

[JaniceR]

Hi Fran: I’m new, my dad was just dx two weeks ago, but this is what I know: WBC=white blood cell count normal is 3.3-10.5; RBC=red blood cell count normal is 4.35-5.9; HGB=hemoglobin-carries oxygen to other organs normal is 13.7-16.7; MCV=red blood cell size normal is 79.7-97 too high=B12-folate deficiency; HCT=hematocrit normal is 40.5-49.7 low=anemic(iron, B12,folate deficient); PLT=platelets normal is 144-400 thousand – makes blood clot. My dad’s numbers don’t fall within the norm, but he feels fine, looks, fine and acts fine.

[JaniceR]

Susan: I forgot to tell you, we bring a taperecorder to all our doctor appts. It is such a big help. It’s so hard to digest what the doctor is saying when you’re nervous and stressed. Better to go home play the tape over and over and then write down all the questions you have for him. And… look everything up.

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