2nd opinion suggestion in the OC Area

[pamelah]

My mother was diagnoses with MDS 3 years ago at the age of 74.- RARES. She was very healthy & took very good care of herself all her life. In the 3 years she has been on weekly Procrit shots for her red blood cell counts which typically are around 11 which is not so bad. She is monitored weekely. Recently over the course of 3 months the shots are not bumping her numbers up at all and her numbers seem to be slowly lowering. The latest is 9.4. My question is that she never got a second opinion. She has suffered for 3 years with extreme nausea and side effects which I feel are from the shots. But her hemoglobin oncologist states he feels that this is not the cause. I have continued to have a nagging feeling but have not wanted to push my mother. But I am now to the point where I feel I have to. I realize Im not a doctor but I try to be informed and aware of her care. So my thoughts are what about getting another opinion, should we have update bone biopsy done to see what is going on? The next step that is being suggested is increase the Procrit but our past experience of this had increased the side effects even more. So looking for some suggestions. Also do anyone have thoughts on facilities or doctors that specialize more in the treatment of MDS in older individuals in the Orange County or LA California area?. There is so much more I can say but Im thinking I should start slow with all my questions.

Thanks for listening. Pamh

[admin1]

I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. Your mother should be very carefully assessed before undergoing any treatment. The first rule with MDS is to do no harm, i.e., don’t make the disease progress faster. Access the following link for centers in your region https://www.mds-foundation.org/mds-centeres-of-excellence/

[CatGirl]

What would make the disease progress faster? My Mom had knee replacement surgery in October 2012. Her bloods counts are going down steadily. I am wondering if the surgery has anything to do with it….She’s much more tired and her memory has gotten a lot worse. I am concerned that the disease is progressing. Thoughts please.

[bobweinberg]

Progression of MDS is a tough concept to define. The main way people think of progression is that the blast count rises, the cytogenetic abnormalities get worse and then the patient converts to acute myeloid leukemia (AML).

Another way to think of progression in low-risk patients is that blasts and cytogenetics are normal, but repeated transfusions over many years cause toxic iron overload that chelation can’t keep-up with, or cause a build-up in antibodies that render the transfusions less effective and cause more frequent transfusion need, which just accelerates the process of iron overload and anitbodies.

I guess you could say the wrong treatment could cause "progression". Some medications work by suppressing the marrow, taking the blood cell counts down, with the idea that the medication will destroy what is wrong in the bone marrow and then the blood counts will rise. My experience with Revlimid (lenalidomide) for six months was that my counts dropped but did not then start rising up. Eventually, I was taken off the medication and it worked its way out of my system so my counts went back to their former abnormally low limits. For example, my platelets were 85,000 before taking the medicine, went down to 8,000 while I was on the medicine, and months after stopping the medicine the platelets eventually rose back to 85,000.

I don’t see how a knee operation would exacerbate the progression of MDS. Keep in mind I am no doctor and only somewhat know what I am talking about. Nothing substitutes for finding a highly expert doctor that answers your questions.

[choijk]

Pam, I took my father for a second opinion at UCLA with dr Ron paquette. Since my father treated at kaiser (sunset) we had to pay out of pocket for the consultation. Dr paquette spent approx an hour with us and was very patient and answered all our questions. From what I remember, dr paquette specializes in mds and he was actually a speaker at an mds seminar I attended in Las Vegas.

Otherwise, in California, city of hope is also well known for treating mds and leukemia patients.

My father actually treated with dr roberto rodriguez, an amazing doctor who transferred from the city of hope to kaiser sunset.

Although my father has now passed, I still remember the journey as if it was yesterday. If you need someone to talk to, please free to contact me. I’ll send you a private message with my email address.

June

[choijk]

Pam, for some reason I am unable to send you a private message. I’m not sure if its because I haven’t been to this site in awhile. But please feel free to email me anytime if you have any questions or would like to vent. I live in glendale, just a hop skip over the Oc. My email address is junechoi212@gmail.com

[Author]

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