New to MDS

[Melody]

Hi All,

I have been reading this forum for the past four hours and just want to thank each and every one of you for the information presented.

My Dad was Dx with MDS in Feb 05. He is also an insulin dependent diabetic. This has been a terrible blow to our family. He was Dx with Lymphoma 23 years ago and given just a few months then. His oncologist hit him hard with chemo and radiation. But he made it!!! He is again seeing the same oncologist. He began receiving transfusions immediately. We are currently at transfusions about every five days. We had to take him to ER on Saturday after I spent a week asking the DOC to give him platelets because he was coughing up blood. He is black and blue down both arms from blood draws, most of the time they can’t find a vein and just continue to poke at him. His skin is petechie. He finally received platelets at 1:00am in the hospital. I am so frustrated with his DOC! It just feels like he is not listening! I am reading these posts and many people receive transfusions on a regular basis, as well as a myriad of medications. His transfusions are sproadic at best, and we have to beg for platelets.

We have asked for a bone morrow transplant and have been told he is too old. We have asked about cord blood, he is too old. We tried to get Thalidomid but my parents would have had to pay $10,000. a month for the drug. We asked about Procrit but the Doc said it would probably send him into AML. The Doc decided to put him on a low dose chemo agent, Cytarabine, for 14 days. No improvement!

Yesterday his Doc informed him there is nothing more he can do. He suggested Dad go to Rush University in Chicago and enter a trial study with Dr. Jamile Shammo. We are having a family conference tonight because he wants our opinion.

I honestly think he is “bleeding out” as I write this post. Not as familiar with this disease as I would like to be, I have a couple of questions. Can my Dad receive blood and platelets the same day? Does anyone know anything about this trial study? What does anyone know about Vidaza?

Sorry about the length, just had to get some things off my chest! Thank you!

Melody

[ButchL]

Melody:

Yes he can receive both red and platelets in the same day. They used to transfuse my wife like that all the time. I can’t answer any of your other questions but I am sure someone on here will.

Just don’t take no for an answer. Keep searching and asking questions until you are satisfied.

Butch

[Neil]

Hi Melody,
Would locate a local hematologist experienced in treating MDS. Experience ia a must!! There are too many variations of MDS for most docs to keep up with. All MDS patients are different. We react differently to the disease and to treatments. What works for one may or may not work for others.
Was secondary MDS mentioned in his diagnosis?
If he goes to Rush. Make certain he sees Dr Raza. She is the best they have at Rush. Has tons of experience. She tends to market their services. This tends to annoy other docs and some patients. She is good! She will work with him for a day, analyze his BMB, CBC and other tests. She will get back woth a recommendation and work with a local hematologist.
71 is pretty old for bone marrow transplants, stem cell transplants and cord blood transplants—based on todays knowledge. There are some drugs. Procrit, Aranesp, Vidaza, Revlimid, Trisenox and more.
Vidaza works on about 18% of the patients who have tried it.
A couple more “musts”. Make abso;utely certain he gets irradiated/filtered red cells. This will prevent downstream problems with stray white cells and matching difficulties.
Make certain he gets irradiated platelets and single donor platelets. This helps his body accept them and keeps out the stray white cells.
A patient can receive X number of platelet tx before the body becomes refractory to them. Eventually they will not work. They want to stretch the interval between platelet tx as long as practical. Platelets live for about 5 days. Sometimes a bit longer. Single donor platelets seem to last a bit longer. Some patients get a platelet boost from Prednisone temporarily.
The secondary MDS issue should be answered. 23 years since his last chemo/radiation is a long time, but should be considered.
Keep him seeing his primary doc. MDS can cause some nasty situations with various parts of the body. Low RBC can cause the heart to work harder. Low WBC can have infection issues. low platelets can cause bleeding issues and stroke problems. A GP or internist would stay tuned to such problems.
I amm also a diabetic–type 2. My docs claim there is very little interrelationship between MDS and diabetes. BUT there might be some difficulties that are exaggerated.
Neil

[lindajo]

Rush In Chicago is one on the best from all of the patient comments I have heard. I don’t think Dr. Raza is there anymore, I think she is in Boston.

They have a number of trials that are available there. It sounds like your hematologist made a great recommendation. Keep a positive attitude that is truly half the battle.

[covergirl]

Hi Melody,
Don’t know if this will work for your dad, but he may want to have a port-cath inserted to make it easier when he needs transfusions. Inquire about it.
It would take anywhere from 30-45 minutes for them to find a vein from me, but now we’re talking 1-2 minutes and their in.

MDS is an incredibly frustrating disease as what works for one does not work for all. In all, you must remember to take one day at a time.

–cheryl

[danz]

I’m just wishing you well. I was considered too old at age 55 for a BMT. Well, I am now 16 months post-BMT. At his age, you might consider a mini-transplant. The downside is that these don’t work as well as a standard BMT. From what I understand, in order to participate in a clinical trial, you have to meet certain qualifications, such as transfusion dependence, have or have not taken Thalidomide, etc. I had my BMT done through Fred Hutchinson Research Center / Seattle Cancer Care Alliance in Seattle, WA.

[Kathryn]

Hi Melody, my father was on Thalidomide, but it didn’t work too well for him. He had some results w/ Vidaza & then Trisenox (arsenic trioxide). The Trisenox is apparently used for older patients who do not have other options. He had been waiting for an experimental drug to come available… It became available in July I believe, but unfortunately I do not know the name. My dad was tx. dependent and would occassionally recieve both platelets & blood. When he was in the hospital he had a reaction to the blood and retained a great deal of fluid. They hadn’t given him lasix, which they had done previously… It was scary & something to keep an eye on. Neil has given you some very important info. and do make sure you feel confident in his doc. as he is the gate keeper.

Also, if you locate your local Leukemia Society, they will send you an application to receive $500 to go toward medical expenses. I would imagine that the MDS-Foundation or the Leukemia Soc. or the American Cancer Society can recommend where your parents can get aid for the medications, etc.. My dad had stopped taking Thalidomide for a few days due to the costs until the pharmacy told my him that one of his policies would cover the it.

Well, I hope I’ve helped a little. I’m sending you & your dad my best wishes.

Take care,

Kathryn

[Fran]

My hsband was told that he has MDS. He is type RAEB-2. The Oncologist wants to start him on Vidaza. We were told that it only helps 10-20% of the people that have been on it. We are seeing another DR. on the 9th of this month. Does anyone know anything about Revlimid? Our primary care MD said that he did not believe in Chemo.

Husband is 73 years old and we need HELP
We live in Phoenix, Arizona
Thanks
Fran

[Suzanne]

Fran, go to a “center of excellence ” for a consultation. There have been so many new developments for treatment of MDS and AML. Doctors with a lot of experience with the disease and access to drug trials give the most knowledgable advice. Not long ago they wrote off anyone at 73 to “supportive care”. Not true anymore. It will depend on how hard he wants to fight for more time and any physical condition complications other then the MDS. Most of the treatment-even the trials work for 30% or less but they are getting better at figuring out which groups they work for best. You can find lists of the centers on this site. Good luck to you. There will be options.

[Terri]

Hi Melody, Neil is our expert and he is right can a Hemotologist that is experienced in MDS and that you also are comfortable with and takes time to explain and answer your questions. OUr local Hemo is the best, he sits down and explains all and takes the time to answer my list of questions. They have not suggested any transplant for BOb due to age and condition. They think by the time they would find a match since he does not have siblings it would be harder on him.
So far the Vidaza is working and I pray it continues, Little worried right now since Bob’s WBC have not gone down like they usually do the first week of Vidaza. I hope Its nothing and when we go in this week it will be better.

Each patient reacts to differnt things. Bob is on Procrit to help keep is Hgb steady and tx free.
It seems to be working, the Arensp did not work for him.

[diner]

I am 62 yrs. old and have had MDS for 2 yrs. My dardepoten shots don’t help anymore and I’m transfusion dependent. I just started the Vidaza shots yesterday because any of the other options wouldn’t work on account of my very low platelet problem. I was told that I would have a 40% chance of it helping by OHSU and the brochures on the drug. Other drugs that will be coming out, aim at helping the red cells only and I need all of them.

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