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[BethW]

I joined the group back in April shortly after my husband was diagnosed with MDS. The medical terms and med choices are so confusing to me that I am having a hard time understanding this disease.

How do you fill out the info at the bottom of your messages with their details? Is that in the Signature part of profile?

My husband has RA type, blasts 4%, other numbers have been very low from the beginning gradually dropping. WBC moving from 4.4 to 3.3 and now 2.1. He had a kidney removed from possibility of cancer during the workup and it turned out the kidney was benigh. hgs running below 8.0, RBC around 2-3. Platelets fluctuating from 53, then 32, now 34. Lots of other things low.

We have stopped asking for prognosis because I think he is afraid to hear it. He has received several transfusions, ARAnespt did not help. Neupogen brings up little over a pt and then drops back down. This week he tried to fix something and got cellulitis with a nodule (abcess not a clot and got an infection that extended from under the arm all the way down below his elbow. After 5 days in hospital on IV antibiotics, 2 units of blood, platelets, Neupoen every day, etc., it finally resolved enough to come home yesterday, but the Infectious doc wants to drain the place possibly after seeing him this Friday. We drive 2 hrs to the Hematologist who we do like. I have a chronic illness also with constant pain and weakness.

He has not been tried on anything other MDS treatments. The transfusions do make him feel better for about two wks. If and that is a big if we can get this infection cleared, we need to find one closer to home but a small town doesn’t provide the expertise he needs.

I guess I am taking a long wordy message to ask for emotional support and also help with understanding the disease. He is now 69 but was always in great health until this was diagnosed. Minor things under control like blood pressure and thyroid. Got on treadmill everyday, etc.

Please forgive this long message, but I am getting desparate. There is a Center of Excellence 2 hrs away but he hates to change from this doc who we both like, but perhaps there are no treatments that will work with all his lines down and not having the cryogenic or whatever you call the thing that is helped by chemotherapy so that is out. Isn’t there something else to try?

I’m so sorry to be so lengthy but am so scared.

Beth

He was

[cherylm]

Hi Beth. I jst read you post and I’m pretty new here, too. Posting for the same reasons. My dad is in his early 70’s so a bone marrow transplant is out. He’s on his 4th round of Vidaza but I guess it takes a while to see if it is going to work. I’m no way up on this crazy illnes like the others on the board but have learned tons just by reading all the posts. There’s info out there but it all reads the same. I think this is the hand down best info source because the people are real and live what they post. You can email me any time to compare notes or just for emotional support. My family is really scared also. I would really suggest you ask your husbands doctor about vidaza or the other durg treatments mentioned on this forum. If the doctor hasn’t worked with any other mds patients, maybe he or she could reach out to another doc who has. Cheryl

[lindajo]

I would suggest that your Dad be evaluated at a Center of Excellence. Two hours away is too hard for routine care.

Keep a good hematologist or internist locally. Most of the time the Center of Excellence doctors will do an initial evaluation and then send you back to your local doctor for care. I have had this disease for 16 plus years and only traveled to a Center of Excellence every 2-3 years to keep up to date with the most recent discoveries. Don’t get discouraged.

My local family doctor is a family practice physician. The only drawback with using him is that he delivers babies and can’t be available every time I need him. That is why I suggest you look into a good internist.

[kls]

Hi Beth,
I would suggest that you ask your Dr. to recommend another Dr. at a center of excellence. My Dad dealt with a Dr at a smaller hospital for about 2 years until his plan needed to be more advanced. His Dr. then recommended that we move onto a teaching hospital that had clinical trials to offer. Both Drs. worked together. He traveled to the smaller hospital(Edward Hospital in Naperville) to get his weekly blood checks and transfusions. Then he traveled 1 1/2 hrs. to receive chemo, bone marrow biopsies, etc at the teaching hospital(University of Chicago Hospital). All info was shared with both Drs. My Dad felt the same way about his first Dr…….he like him and hated to drive farther for another Dr. Like I said, they worked things out so that he only had to travel farther for the procedures or chemo that his regular oncologist couldnt provide him. Does his oncologist feel as though he can handle everything himself? We were fortunate enough to have a Dr. that let us know when it was time to move on to a more advanced hospital. Good luck! KLS

[jaxem]

beth/cheryl
this is just my opinion on what i’ve read here on this topic. i wouldn’t get hung up on “centers of excellence”. this may get me ostracized by The Foundation but I notice that major institutions such as the university of Minnesota who are pioneers in blood disease research & treatment, Univ. Miami and the Univ. Michigan aren’t listed probably because they haven’t cared about sending in an application. Find a hematologist that you are happy with, who keeps up on the latest research in hematology, and is optimistic. beth, your husband’s levels seem to be dropping quickly. are they considering doing another marrow biopsy to see if the blasts are going up? how old is he? any treatment being considered? if your current clinician group is sitting on their hands & not doing anything, maybe you do need to go somewhere else to get an expert opinion. and cheryl, your father isn’t “too old” for a transplant in view of the many “mini transplants” that are being done on patients into the 80’s.

[BethW]

Thank you, Jack, KLS, Cheryl, Linda, and anyone else I might have missed for your suggestions. They were all very wise and helpful. My husband’s next appt with the Hematologist is next Wed. He had said he felt it was time to find a local physician to follow him and gave us the name of an oncologist. I am feeling now as if we should get a referral from him to UAB since even the town closest to us doesn’t have certified Hematologists. It seems though that every medication I look at is not for him because this cell line or that cell line is down and thus is not a viable option for him. Since all are low, does it make it harder? Anyway, our current Hematologist hasn’t recommended anything new. We need to have an open, frank talk with him next week and see what other options we have.

Thanks to all of you for reaching out and answering questions and being so supportive,
Beth

[Mary4Mike]

Beth,

I have to agree with Jack about getting hung up on the term “Center of Excellence”. We live in a small town with a small, but growing hospital. This is where my husband was diagnosed (by BMB) and received all of his treatments up until a year ago when his doctor left the area. We see a doctor in a neighboring town that is in a group of hema/onc, but it is not rated a Center of Excellence.

I also wanted to add that just because your husbands counts are low, this doesn’t mean he couldn’t have treatments. This is when treatment is usually begun. Perhaps he will have to be transfused to get his counts up to an acceptable starting point. My husband was transfusion dependent for a year (monthly) when he began Vidaza. It kept him transfusion free for a year before it stopped working. He didn’t really have any bad side effects from it either.

Just something to think about:)

[Mary4Mike]

Beth,
I just read your original post. Yes, you fill out any info that you want listed in your signature in the “My Profile” link.

[cherylm]

Jack, what is the mini transplant you mentioned in your response above? My dad’s onc said he was outside the age limit for a bmt. She didn’t say anyting about a mini transplant. If it is something to consider, I will mention it to her. She is actually very good and does keep on top of the latest mds treatments even though the cancer center in not a COE. You can email me directly if you like, or just post the info here. Thanks Jack. I appreciate all your input

[jaxem]

cheryl
a full transplant involves total annihilation of blood cells (ablative). a “mini” or non-ablative transplant is a partial wipe-out of your cells with or without total body radiation but always with a chemo drug like fludaribin. it was designed especially for older adults. heart & kidney function must be in good health. if you have a donor, stem cells are then introduced. if you don’t have a donor as in my wife’s case, you may be able to go to an umbilical cord blood transplant but only if the patient is fairly small in weight (<200lbs). very few transplant centers will do a cord blood transplant on patients over 65. the Univ. of Minnesota is the most experienced in performing both matched donor marrow and cord blood transplants. you will find that they are experienced with patients into their 70's. I suggest that you go to their web page and contact them directly. My wife & I are traveling there for an interview next week.

[jaxem]

cheryl
obtw, COE’s are an MDS Foundation thing & don’t mean that much to me. i don’t know where you are in PA but your dad should be seeing a specialized hematologist. there are good ones in pittsburgh & philadelphia. is the doc keeping on top of things if she doesn’t know about the latest treatments for mds/leukemia patients? I am up to here with clinicians that lose hope in patients because of age. if your dad is healthy & wants to transplant, show him the path to get that transplant! you can e-mail me directly if you want more help with this.

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