very new to this we feel lost

[Di / Scott’s wife]

We found out my husband had Leukemia on Mar 28th 05, my birthday…
he had a BMB on that Friday prior and because of Easter the Doc from the VA hospital, waited until Monday…
She sent us over to Roswell and they expected to keep him in for 30 days for extensive chemo… we didn’t know what was going on…
The VA came back with his blasts at 20%, they rechecked him at Roswell and they were only 15%… you only have MDS we can’t treat you with AML as we thought you had… so after an overnight they sent him home…
We still don’t know anything…
We finally got in to see a doctor at Roswell and he explained that his blasts might not be high enough to go in for treatment right now but that his chromisomes are bad and he will need a BMT…
We have been back to the Doc’s many times and he has had 4 biopsy’s to date… the last one looks like blasts were at 11%…
But he has had no treatments…
last week he was laid up in bed for most of the week complaining his legs and feet hurt…
oh and the reason we got even this far is he has some kind of internal itch that they say comes from this disease…
would be nice to know if anyone else has had this itch… and is he suppose to hurt as he is saying… I am trying to encourage him to get up and do anything but I just can’t get him going…
He sees the Doctor again this Thursday… I feel after reading many Post’s I would love to know the proper questions to be asking…
thanks for any help, di

[JulieMarie]

di,

Sorry to hear about your husband. Some things that the group will ask you is his classification of MDS, RARS for example. If Neil is still around and sees your post he’s very good about filling you in. He’s had the desease for some time now.

The one thing I’ve learned from my mom is that she takes a lot of naps, when her energy is way low we know her hemoglobin is way down, She has never complained to me about body itches or leg pains, besides the other month when her job changed and she was walking more than before. Encourgage your husband to get out of bed and walk a little cuase that will help keep his strength up.

the only true cure for MDS to date is a Bone Marrow Transplant. Drugs such as Procrit and Vidaza will keep counts stable, but not everyone reacts to these drugs.

Hope this helps.

[Suzanne]

You need to see a Dr. that specializes in MDS and AML preferably at a Center of Excellence for the disease.There are some in NY. If you are going to consider a bone marrow transplant you might want to chose a center that does a lot of those if you can. There is a list on this site. Have not heard of an “itch” except as a reaction to a drug but that does not mean that it can’t happen. This disease is very individual. You did not mention type of MDS-because you mentioned blasts, I am guessing he has some level of RAEB. You did not mention what kind of blood counts he has or his age. Low counts can cause some symptoms.The fact that he has chromosome changes would make me suspect a high risk level. I believe that the last presentation I went to said that they have now decided that it is better in high risk cases to do a transplant as soon as possible rather then to wait for AML as they often do. Does he have siblings? Have they been checked for a match? All of these things would be addressed by a center of excellence so again the very best thing you can do is get at least a consultation at one so that you have a more realistic idea where he stands, what his options are, and what they advise you to do at this time. You can make it through this. There have been many encouraging developments in the past few years in treatment and in the transplant process. Most local Hemos seldom see MDS except in those elderly that usally have no options except supportive care. They can’t possibly keep up with all the experimental developments. Learn as much as you can. There is a wealth of information on this site and many caring people that have had lots of different experiences with the disease and treatment and are very willing to share information.

[Carrie]

Roswell is a Center of Excellence. You’re in good hands! Tell your doctor about your concerns and be honest.

My dad is also treated there and my mom works there.

[sarah]

Di, welcome to forum. What is your husbands age? Hopefully you will get a classification soon. My husband is RAEB. For the past 3 years, he daily experiences a itching of the skin. It starts like a itching, then shooting pains then a burning sensation. Drs cannot explain it to date. I have asked others on this forum, if they experience this sensation. We have not found anyone who has. Does this sound similar to what your husband experiences? Also it is worse after showering. So needless to say, he deals with this daily for sometime now.
Sarah

[Terri]

Di, Welcome I am sure you will find a lot of answers here, I know I did when I first joined. There is so much support and knowledge on this board.
The others have all relayed a lot and when Neil post I am sure he will give you tons of questions to ask the doctor, he is our wealth of information.
Bob does not have the itch, but I know he says his feet feel like they are filled with sand. Weird and no one has an explanation.

[Suzanne]

Sure glad you are already at a center of excellence. Sorry I can’t keep up with all the ones that are. You also need a Dr. that you trust and who explains things well. Neil has a great list of questions to ask. Write down your concerns and make sure you get the answers on your next appointment.Maybe take another family member with you to help listen. Sometimes they really can’t answer as exactly as we would wish. There are a lot of unknowns about this disease.

[Scott P]

thanks for all your help… I will try to keep an eye out for the proper questions to ask…
My husband is 43yrs old…
his itch seems to get better after a shower, but really bad when it is cold… which he is now almost always…
we do like the doctor he is seeing at Roswell and at the VA Hospital… but we still feel like we don’t know anything…
his doctor has told him he cannot work or go to school and that he expected to have a transplant by June… he has a brother and sister that were just contacted regarding HLA typing…
thanks again we appreciate any help so we can not feel so lost… di

[Neil]

Hi Di,
Roswell is a great facility. MAke certain he has a doc that has treated other MDS patients. This is very important. Particularly those with RAEB.
Will send info to your E-mail address. Much too long for The Forum
Neil

[sarah]

Hi Neil, hope you are doing well. Good to see your post.
Take care,
Sarah

[Di / Scott’s wife]

Neil,
I didn’t receive anything in email yet…
just don’t want to miss out the doctor appt is 26th…
thanks, di

[Neil]

Hi Di,
Will resend. Just loaded some new software and my PC is acting a bit strange.
Have a sister-in-law living near you —in Williamsville
Neil

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