What Next?

[Nancy L]

My mother is 84 years old and has been receiving blood transfusions for the 1-1/2 years for MDS. Since the summer, the transfusions were administered every 3-4 weeks instead of the usual 3-4 months. Now she has developed Iron Overload and receives Subcutaneous Desferal 8 hours/day. I was told that she would require medication for Iron Overload one day, but I was not prepared for the costs of a daily visit from the nurse.

As I am not in the same town as my mother, however, I am responsible for her finances and am not getting any straight answers from my siblings who are with her, I need to know what the next step is in the progression of this disease. I am not looking for medical advice, rather what I need to be prepared for and the possible time line.

Any information here would be greatly appreciated.

[Birgitta-A]

Hi Nancy,
It is difficult to tell you anything about what symptoms your mother perhaps will develope when we don´t know anything about her white blood cell count or her platelets.

I get blood transfusions and Desferal (with a home pump) intraveneously in a port-a-cath for low hemoglobin and iron overload. Then I take Neupogen 2 injections/week subcutaneously myself for low white blood cells. For very low platelets many patients get platelet transfusion but new drugs will perhaps be approved late spring 2008.
Kind regards
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days every 6th week after transfusion and Neupogen 2 injections/week

[Ruth Cuadra]

Hi, Nancy.

Birgitta is right that key to the progression of your mother's MDS is in the details of her diagnosis. Do you know whether she has any chromosome abnormalities? What is her blast count? These details would come from the report on her bone marrow biopsy.

Given that your mother is transfusion dependent and the time between her transfusions is getting shorter, it is most like that she will need to continue Desferal treatments as long as she is receiving blood transfusions. I think many (most?) people can insert the needle and start the Desferal pump themselves. Is this why your mother needs daily visits from a nurse? Perhaps your siblings who are with her can work with the nurses to find a scheme that eliminates those costly daily visits.

As an alternative to Desferal, there is an oral chelation drug named Exjade that eliminates the problems of dealing with needles and pumps. But it is quite expensive on its own. If it were possible to switch your mother to it, you could contact the maker, Novartis, about possible reimbursements via their Exjade Patient Assistance and Support Services (EPASS).

Hope this helps.

Ruth Cuadra

[Chirley]

Hi, I know this is getting off the subject but I noticed the MUD part in your diagnosis information ,Ruth ,and I was just wondering what it meant ? Chirley

[Ruth Cuadra]

Hi, Chirley.

MUD stands for Matched Unrelated Donor. My donor was identified from the National Marrow Donor Program (NMDP) registry. She was a perfect 12/12 match and I thank her every day for her gift of life.

Regards,
Ruth

[Nancy L]

Ruth:

Exjade has been ruled out as a possibility. We discussed the findings from May on the dangers of using Exjade and the doctor decided it wasn't in mom's best interest to use it. See Link http://www.aplastic.org/aplastic/news/news.php?id=116

Mom hasn't had a bone marrow test in a few years. Her platelet Count is 357, WBC is 3.5, RBC is 2.79 and HGB is 8.3.

Nancy

[Birgitta-A]

Hi Nancy,
Your mothers platelet count is very good . Her WBC count is low but still normal (in Sweden). That means that ske only needs treatment for low HGB and iron overload. Do you know if she has any blast (immature) cells in the blood test?

In Sweden the doctors give Desferal - that has been on the market for at least 35 years - to patients with vulnerable marrow. Exjade and other drugs that you take as pills are used for other types diseases with iron overload. Do you know her ferritin-level?
Kind regards
Birgitta

[Ruth Cuadra]

Mom hasn't had a bone marrow test in a few years.

Nancy,

It's certainly true that Exjade isn't for everyone. Does your mother have pre-existing renal conditions that make her more at-risk?

You say she hasn't had a bone marrow biopsy in quite a while, but now her transfusions requirements are changing. That in itself points to changes in her bone marrow. I'm surprised that her doctor wouldn't want to take another look at her marrow to see if there were any clues about how her disease is progressing. Has this been discussed? Given that her platelet and WBC counts are good, maybe you are dealing with something that is not really MDS. Only a bone marrow biopsy can confirm the diagnosis is still accurate.

Regards,
Ruth

[Nancy L]

Ruth:

Mom is 84 years old. She is still "viable" and lives on her own. However, I really think the doctor feels there is no reason for a bone marrow test as she would never survive a transplant. I think he is just treating things as they come.

Mom was never officially diagnosed with MDS, however, an exam at the Cleveland Clinic said "yes". She has been with the same Oncologist/Hemotologist since 1988. He has always said "no she doesn't have it".........but then.....what does she have???? So confusing.

We originally found the problem when mom was refused for a life insurance policy. According to the insurance company....she wasn't going to make it through the next year....and that was in 1988. Despite her doctor's assurance she would live longer...they didn't believe it. They were going on the results of the bone marrow tests she was given at the time.

He has kept her going thus far. Mom has ALWAYS been anemic. We grew up eating liver, beets, etc. But, back then, they never even heard of MDS, so they continued to prescribe iron pills, then eventually upped her vitamin B's. It wasn't until last year that she required transfusions. Procrit never worked.

I am at the point of just trying to find out what the progression of the anemia is so we can be prepared to take care of her. I am 250 miles away, and the two who are in town with her maintain, but panic when something new is thrown onto the pile.

Nancy

[Ruth Cuadra]

Nancy,

The reason for having a bone marrow biopsy (BMB) to confirm your mother's diagnosis would not be for the purpose of planning a transplant, but to establish how best to treat her and how to anticipate what course her disease might take. If she doesn't have any of the abnormalities that define MDS, but some other sort of anemia, her prognosis could be for a much longer life than if she was actually found to have MDS or even MDS progressing toward AML. Because your concerns are about how to plan for her future care, I think you need the information that can be obtained only from a BMB.

Although BMBs are an invasive procedure that is not pleasant for the patient, they can be done with conscious sedation so the patient feels no pain and recovers easily. There are several posts on this topic in the Questions & Answers forum.

Regards,
Ruth