[jaxem]

jeanette
I remember you and the fight your dad had with this awful disease. I am so sorry about his passing. You need to know he’s got to be in a better place now.

[jaxem]

Hi, Kim
I’m not understanding why your dad would not be a viable candidate for induction/consolidation chemo such as a MEC regimen. My wife had very little side effects trouble with it. She did develop congestive heart failure, however, not sure if she already had it or got it the same way she got MDS, chemo following breast cancer surgery (secondary cancer). Cindy’s comments above reinforce these comments. I’m not volunteering yet & am taking it a little slow to return to my wife’s treatment center. they want me to put together a newsletter for patients & caregivers.

Cindy
your comment about BMT vs SCT is correct. I think BMT’s are rarely done anymore. Good luck to you and your convalescence.

[jaxem]

lynne
what is your diagnosis? how often do you go in for a cbc check? what are your cbc #’s?

[jaxem]

kim
again, the only difference between leukemia & mds is 20% blast rate. at 65, he’s not so old that he couldn’t survive an induction chemo regimen. don’t forget, once induction is complete, he needs to go through another chemo regimen (consolidation) regimen. are you stating that stanford is advising the trial rather than chemo? response rate only means that patients show "some kind" of reduction in their disease. putting toxic chemicals into patients blood streams (directly into the heart) is a scary thing. many, many patients have gone through it. are you thinking transplant because that’s the only cure?

[jaxem]

sorry about the 0.8 number in last reply. that’s a hemoglobin #. normal hemo is between 12 & 16. not sure if any institutions transfuse based upon RBC level.

[jaxem]

laurie
mds isn’t a disease that is seen by many healthcare pros especially people in ER’s. that’s why it’s so important you see a hematologist, preferably at a known institution for doing transplants. I’d be scared stiff being treated at the place you describe. any chance you can get a 2nd opinion at Hutch in Seattle? I think you mean to put a decimal point beween the RBC #’s. also, most institutions don’t transfuse until you get below 0.8 but patients do react differently at low counts although yours doesn’t seem that low. Normal RBC is 4.1 to 5.4. anyone say anything about getting you started on revlimid?

[jaxem]

cz
I left you an e-mail.

[jaxem]

cz
I left you a message on your message board.

Bev
good to see you back here offering your opinions and experiences. I hope you’re doing well since Barry’s passing, and also your own surgery last year. I still talk to Ricky every 2 weeks or so. His wife is doing well and at home now. Keep up with The Forum as I find it good therapy for myself & maybe you will too.

[jaxem]

kim
a lot of mds can be treated as a chronic disease and a lot of patients do well with periodic treatments. when there are blasts involved in mds (RAEB), this can become a smoldering leukemia. The only remedy is to replace the blood (stem cells). Smoking?? I wonder. When cancer is involved, all bets are off! My wife was treated at Temple Univ. in Philadelphia, and at the Univ. of Minnesota. I know that stanford and UCSF are good institutions for treating blood diseases and they do stem cell transplants. If you’re willing to travel, the Univ. MN is far and away the premier institution in the country, if not the world for treating blood diseases. They are doing trials no one else is doing. They have performed many more transplants than anyone. Unfortunately, my wife was way too sick to undergo anything. It has been tough for me without her & as special dates pass like Easter, it hurts. I am planning to do volunteer work for Temple to aid patients & caregivers and I’m excited about that.

[jaxem]

mary’s right about 4 cycles being low. It is the minimum but 6 is the norm. I would think the docs would have gone the 6 rounds, waited a month, then done the biopsy. But they’re the docs and I’m not. also, I’m not aware of anything at the Huntsman Center. Is it in SLC? attached to a major hospital? Again, any chance of going to Hutch? My wife had clofarabine which didn’t work for her but did work for another Forum member. Everyone is different. a dosage of clofarabine for 5 days costs $250,000. Whew!!

[jaxem]

kim
sorry about your dad’s diagnosis. go to stanford & get a 2nd opinion at UCSF who are also known for work in blood disorders. no reason why they won’t see him. monosomy 7 is a tough cell abnormality but they can deal with it. any idea how he contracted leukemia? I would think they would want to start him on an induction then consolidation chemo regimen like MEK.

[jaxem]

Stuart & Joy
I assume that you are going to the Int’l Bank since no sibling is qualified as a donor. My wife’s sibs never matched so we tried for an umbilical donor but her level of disease was too high. A trial in the US at The Univ. Of Minnesota using our son’s Natural Killer Cells, then Stem Cells, never came to fruition because of the level of her sickness. She never would have survived the pre-treatment. Azacitidine (vidaza) or decitabine (dacogen) is a good alternative which hopefully might work for you.

[jaxem]

lori
check out:
Vanderbilt University Medical Center
Nashville VA Medical Center (Secondary Location)
Stem Cell Transplant Program
1301 – 22nd Avenue South
2665 TVC
Nashville, TN 37232-5505
(615) 936-1803

who knows where it developed but I’m told that "it is a rare occurrence when it develops from chemo and/or radiation". My wife died from this "rare" development and I continually hear cases of secondary cancer occurring. never heard of herbs, vitamins stopping this cruel disease although many patients live with some forms of the disease for a long time. In cases where the disease is life threatening like my wife’s (RAEB), the only "cure" is to replace the blood totally (transplant) using a donor.

Bob
an age of 63 is not too old for a transplant. get a 2nd opinion at an institution experienced with your disease.

[jaxem]

bilb
I am so sorry for the loss of your brother. this is such an evil disease. My wife & I spent the summer at Univ. MN (and Fairview Hospital) last year because she was so sick and it did get down to going there as a last resort. They are perennially cutting edge & have done more transplants then anyone else. Although transplants can be done at various levels of disease, the lower they are & the younger the patient, the more chance of success you have. We went for a special trial only they were doing involving a half-match (haplo) using our son as the donor, however, she never got to a point of health where she could have survived the pre-transplant process which is devastating. If your health is good, you have a 1/3 chance of success of living 3 years. You can be in the greatest condition but if cancer strikes, especially blood cancers like leukemia & lymphoma, you’re in for the fight for your life. This is an MDS forum but people have to realize that some forms of MDS can be a precursor to leukemia and lymphoma. We have a long way to go and I pray that pharmacological approaches to fight these diseases quickly get better with time. If anyone would like some impartial information about the Univ. MN, feel free to e-mail me.

[jaxem]

mtair
insufficient information about what’s going on. (1)what chemo treatments, (2)what type MDS diagnosed (RA, RAEB, etc.), (3)what clinical trial, and (4)why Vidaza. Also, how old is he, where is he receiving treatment, have you gotten a 2nd opinion, and is he seeing a hematologist? Are you very far from Seattle to get to the Fred Hutchinson center?

[Author]

Posts