[jaxem]

ccpat
RCMD is a bit rare. one or more of the chromosomes are abnormal causing cytopenia. I guess you’re saying his hemoglobin is in the 8’s and his neutrofils are less than 10 rather than 100. "wearing a mask" doesn’t really do much but alert people to stay away. He needs to keep free of children and people with possible infection as he is susceptible to infection. have you looked into getting a transplant? Donor available? Vidaza will lower all counts even more. get back to this Forum to talk more candidly about your husband’s disease.

[jaxem]

jnos
sorry for the diagnosis. many people with RARS have lived long & fruitful lives. it would be nice to know what’s causing your HG to be so low. there are a few injection meds which people have learned to take that have been beneficial to them. Good choice going for a 2nd opinion. If you’re looking for a 3rd opinion, I recommend the Univ. Minn in Minneapolis which is at the cutting edge of technology for MDS. You should go to a place that does a lot of transplants and are fully setup to treat the disease like Minnesota. I’m not a believer in watch-and-wait treatment for MDS unless all clinics have the same opinion. good luck to you!!

[jaxem]

maureen
i’m curious where those "success" rate figures came from. having a sib match doesn’t carry any increased chance for success than getting a matched unrelated donor (MUD). The figures I’m familiar with is that 1/3 achieve a 3 year success, 1/3 fail, and 1/3 die. of course, this is based upon a patient is reasonably good health and age 65 or less. It absolutely is a devastating illness.

normally, ara-C isn’t given by itself. They combine Mitoxantrone, Etoposide & Cytarobine (ARA-C) for the protocol and it’s given over several days. Then you wait until the body recuperates and do it again. the point I was trying to make is that a MEC regimen is performed on patients less than 70. my wife only had the 1st cycle (induction) and never made it to the 2nd (consolidation) because of the terrific hit it had on her body. She had to switch into something milder such as vidaza, then dacogen, etc. seems like your husband’s diagnosis is RAEB-2, the same as my wife’s. you should query the docs on using chemo. Please understand that I’m pushing chemo because I would be thinking transplant, but if they don’t think he would survive the pre-transplant chemo, then that’s another issue. then there’s the matter of finding a donor, too. good luck to you & your husband.

[jaxem]

bety
my wife passed about 10 months ago. I, too, have feelings of guilt in that I always pressed to do more than maybe should have been done including a last gasp effort at a clinical trial far from home that lasted 6 weeks and only seemed to prolong her misery. This tears me up more than anything in her 3 year effort in fighting the disease. The thought of her in a wheelchair in her last 3 months is agonizing to me. I’m hoping time will help me live with these thoughts. All the best to you.

[jaxem]

Hi, Mo
Being your husband is 66, I’m a little surprised that they didn’t talk about a chemo protocol (MEC, etc.). What have they said about a transplant? Is there a donor available?

[jaxem]

cathie
several other kiwis responding here. maybe some will correspond once they hear about you. you will hear the catch phrase, "everyone is different" with this disease. g-masews’s husband disease is fortunate as most progress at varying rates. continuing cbc & marrow biopsies will show progression & hopefully yours will be like her husband’s. I recommend getting a recorder to record what docs are telling you. ask questions that you have written down. most docs will spend the time with you. reactions from other friends & family vary. most don’t understand what mds is. when explained that mds can be a prelude to leukemia, the reaction is to offer sympathy. only empathetic sufferers & caregivers can understand what you are going through. being so young is a positive. I truly hope you get a match from a sib. stem cell transplant is the only cure.

[jaxem]

wendeo
Good for you for registering for the transplant list. You do know that you will only be a 1/2 match (haplo) such that your stem cells cannot be used for a typical transplant for your father. However, others may be a match & possibly you may be able to donate your stem cells to them. There is some work & success in haplo research going on now but again, this type of transplant is not typical. You didn’t state what type MDS he has but some forms of MDS grow into leukemia; MDS is definitely linked to leukemia. I can’t say enough about people giving their time for this noble cause. You can contact both the Leukemia & Lymphoma Society as well as the MDS Foundation to get their ideas on fundraising work you & your son can do. And thank you. I wish your father all the luck in the world in battling this ugly disease.

[jaxem]

Josh
Colchicine is not approved by itself by the US FDA so you won’t be getting too many comments from Americans about the drug. Please see http://en.wikipedia.org/wiki/Colchicine for a complete discussion about the drug. It will cause cytopenia per the discussion.

[jaxem]

hi, sherry
since high whites might indicate a multitude of things, without knowing a little more about your dad’s latest marrow biopsy results, it’s hard to say why the whites rare increasing. if the whites are rising because of defective cell increase (blasts), I wonder why chemo hasn’t been started. How old is your dad? Have you gotten a 2nd opinion from a known bone marrow transplant center? dacogen treatment won’t do much unless at least 4 treatments are done. If it were my dad, I’d want to quickly find another center. Please indicate if you need help in finding another center in your area.

[jaxem]

understand of being so tired all the time. yes, plenty of transfusions for RBC’s & platelets. hope he gets at least 6 rounds in. thank you!

[jaxem]

miriam
i’ve been responding to this forum for 4 years not & still have problems figuring them all out.

[jaxem]

my wife started treatment with this drug after demethylating drugs dacogen & vidaza stopped working. It is an extremely expensive trial drug to the order of $250,000 for a 5 day treatment. It really didn’t do too much for her but, as it has been said, everyone is different. One person was treated at Sloan-Kettering in NYC about a year ago reported reduction in blasts but other issues with his health prevented a good overall outcome.

[jaxem]

tory
i see nothing of significance but others may write about something I’m missing. WBC’s are a little low & MONO’s a bit high but . . .
neutropenia? is she sick with infections often?

[jaxem]

white counts can be high or low in blood diseases. usually high whites mean infection with the body trying to fight the infection. my wife always had a very low count with the subclass neutriphils also being low. because of the low whites, she was continually fighting infections. red cells (hemaglobin) carry oxygen & if these are low, fatigue will develop. be assured she is at a good hospital with great docs. any chance of transplant?

[jaxem]

should take for at least 4 rounds, preferably 6. what type MDS does he have? how old? after which round was last biopsy done? cbc results?

[Author]

Posts