[Brenda P]

I would say trust the doctor–the long term use of antibiotics can eventually hurt her kidneys or liver (especially vancomycin). Also it can cause resistant bacteria to grow so the antibiotics won’t work next time. Good luck!

[Brenda P]

Maueenh,

I completely agree with patti, the coumadin should be stopped considering that now your dad is not making the clotting factors he used to. You should consult with your doctor about that soon. It seems that the doctors who focus on the MDS sometimes “forget” what the patient’s health was like before… My dad was still on blood pressure lowering drugs when he was so anemic his blood pressure was 110/58.

The chromosomes have been found to be associated with certain types of disease. For example, if you just have -5q, it is associated with a milder disease. Multiple abnormalities, like your dad has are associated with a worse disease, BUT there has been a ton of research in MDS lately, and several new drugs introduced within the past year so there IS new hope. Definitely consult with a center of excellence since you’re in Boston. Maybe your dad is a candidate for a mini-transplant. Of the 3 latest drugs, I think either Vidaza or Dacogen are good options–sounds like he’s getting good care and good support from his family!

[Brenda P]

Oh yes, my dad had TERRIBLE gout affecting both feet. Allopurinol decreases the uric acid that leads to gout–you may want to ask the doctor about it. But the only thing that worked for the pain was codeine/morphine.

Check out Tembo’s link, but be aware that baking soda has lots of sodium so may not be good if your dad has high blood pressure. Also in terms of natural remedies, I heard that raisins soaked in rum helps…

[Brenda P]

Just wanted to update you–my dad was diagnosed really late. He had mild anemia a few years ago and I wrote a huge note to his doctor to check it out, get Aranesp, etc. but the doctor didn’t follow up. He was being evaluated for a long time for blood loss before they did the BMB and found MDS. So–I think that’s why he went so fast after diagnosis. He did experience severely low platelets on Revlimid, but he was so late in the disease by the time he was treated that I’m sure the disease made it worse. My only advice is keep an eye on MDS and make sure your doctor stays ahead of the curve and has a plan for when/if it transforms to AML. My dad’s doc was HORRIBLE and unprepared, he reacted to events too late (but in the end, Dad’s MDS was so advanced that the difference between a good doctor and a bad doctor would just be a couple of days/weeks). Good luck with you, it sounds like you’re fully informed and have good support!

[Brenda P]

The del 5q is a mutation found in the bone marrow that is associated with MDS. If your dad has ONLY 5q deletion that is a good sign–he has a better prognosis and Revlimid is the best choice. If he has other chromosomal mutations (“complex cytogenetics” they call it) that is a worse prognosis and I would consider Vidaza, because Revlimid has not been studied very much in these “complex” cases.

I can’t explain how the drugs work offhand (pretty complicated stuff about how they inhibit the bad cells from growing, but do it in different ways.) But you and your dad may want to consider the treatment plans for both drugs: Vidaza is IV so requires hospital visits; Revlimid is a tightly controlled substance because it can cause birth defects so you need to order by mail from a certain pharmacy and talk to a pharmacist phone counselor every month. Good luck!

[Brenda P]

Please look into the Zarnestra as soon as possible. My dad had RAEB-2 as well and I feel that it would have been the best thing to help him. Your oncologist could fill out a form to obtain it from Johnson & Johnson. Good luck, and keep your spirits up!

[Brenda P]

I am so sorry for your loss.I know it’s difficult, and unexpected in spite of having this diagnosis. My thoughts are with you.

[Brenda P]

I just wanted to post that I received a call from the MDS Foundation, and they were so helpful. When donations are made, a thank you card is sent out. Also if you register you can receive a list of people who have donated in memory of your loved one.

Thanks all–
Brenda

[Brenda P]

Thank you all. We’re requesting donations to this foundation in lieu of flowers. Everyone has been so helpful, and we need to find more options to treat this horrible disease.

[Brenda P]

Dad passed away when we took him off the vent today. It was a good decision, the only one we could make, even though it was hard for us. He seemed to be sleeping (ok, snoring a bit–) but I know he was ready.

[Brenda P]

Jan, please keep in touch with me because my dad has the same effects. He is so weak, tore a hip muscle completely from the bone, can’t talk, etc.

See my post under “help, my dad’s doc is awful”

this is such a horrible disease.

[Brenda P]

Be strong like your dad. i’m so sorry about your loss, i know it’s painful and i’m thinking of you.

[Brenda P]

Oh, also Yang came in, looked for 2 seconds at my poor unmoving dad and said, “the next step is to consider aggressive chemotherapy… he’d have some mouth sores and lose his hair and need to be in isolation, but we can consider it.”

this is before i had my chat with him.

Personally, I was thinking Zarnestra compassionate use but i think that’s too late. But someone mentioned the possibility of leukocyte sludging causing the dyspnea and now i want to ask about hydroxyurea but i’m scared and the doctor hates me.

[Brenda P]

My dad saw a rise in blood counts after a month on Revlimid 10 mg. But now due to side effects he had to cut it to 5 mg. Also he tore a muscle and then got an infection (not sure if the infection was from the hospital or if it was developed before he was admitted).

[Brenda P]

I’m just a pharmacist, not a doctor, but I know Aranesp is VERY similar to Procrit, (EPO is a huge protein and Aranesp has just a different little tail.)

The thing is, Aranesp has a longer half life; it sticks around longer in the body. I would ask why they changed because with the procrit at least you could hold the dose and the hgb stimulating effect would wear off more quickly.

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