Supportive Care

[lindajo]

I have seen many new and old patients refer to supportive care as a negative.

I was diagnosed in 1991 with preleukemic erythremic myelosis, now refered to by the WHO (World Health Organization) as AML M6. I went to two Center of Excellance centers, Washington University-Barnes in St. Louis, and Memorial Sloan Kettering in Rochester NY.

There was much discussion and disagreement about the proper course of treatment. During the time that elapsed I somehow improved and was reclassified as MDS-unclassified which is now called MDS-RCMD (refractory cytopenia with multilineage dysplasia).

To date I have only had transfusions, antibiotics and a nutritional program designed by my chiropractor that includes many vitamin supplements.

I have lived 15 years since my diagnosis, disabled but able to be here for my daughter who was 7 1/2 at the time and now 22. She is ready to graduate college and will be married next year.

Listen to the doctors when they suggest supportive care. Sometimes it is the best way to stay alive. I am all for the new treatments coming out, but just because a doctor may suggest supportive care as your best alternative, doesn’t mean they have given up on your case or that they don’t care about you because of your older age.

In my case I have had 14 years longer, than they initially predicted. Be open to the suggestion that no drugs may be the right treatment for the time being.

[KATHY1]

lindajo,
Sometimes I wish my mom would have stayed with supportive care. I wonder if she would still be here if she refused these new treatments. Except for having to go for her bi-weekly shot and occasional transfusion she lived a quite normal life. No one knew how sick she was. So I agree with you, depending on the case sometimes supportive care is the right choice.

Kathy

[patti]

Lindajo,

I have to agree with you. My MIL and I were talking the other day about the new treatments for MDS and we finally settled on this: All of these treatments are only a few years old. Most of them have less then a 30% success rate. If we took a test in school and only got 30% we would be flunked. I maintain that doctors are using people with this disease as guinea pigs for their new drugs. Honestly, there are only a few people on this list that can actually say they were helped by the drugs. VERY FEW. I think we’re always safer taking the natural/supportive care approach then to act as guinea pigs for drug companies that want to make a lot of money.

To this day mom’s doctors refuse to believe she’s still here because of how she’s taking care of herself. And just last week they told me again her prognosis is still only 4-6 months (umm… it’s been more then a year). I don’t disparage those who try the drugs, it’s just not for us.

Just my two cents worth.

[lindajo]

I didn’t mean to suggest that I am against research, the new drugs that are out or people who make a decision to try taking the new drug treatments.

I believe that doctors and researchers get a bad rap when people make statements that they use patients as guinea pigs to make money.

I believe that they are dedicated professionals who are striving to find permanent relief for us. I just don’t want patients whose doctors recommend supportive care as a treatment alternative to feel like that recommendation is a doctors way of writing them off.

Many of the patients on this forum are new to the disease. They are overwhelmed with all of the terms and new language. I recommend that in making a decision about a doctors’ suggested treatment protocol that they keep an open mind about supportive care as an alternative. l also feel like they should research and keep an open mind about drugs and clinical trials.

100 years ago there wasn’t such a thing as insulin shots for diabetics. It took patients willing to try new things and yes being guinea pigs to bring that disease to a point where it is managable for most of those afflicted with it today. Someday I hope the same will be true for MDS patients. We need both avenues of treatment to wipe out this monster.

[Terri]

When Bob first started Vidaza (5 Aza) the first time it was becuase his blast were excalating in his blood and marrow. Rather than have him immediately progress to AML he was put on the 5 AZA on a compassionate use before its approval. We also started the supplements and vitamins. After 6 rounds his blast were back at a normal range (and not transfusions) He went 7 months without anything but the diet, vitamins and supplements with Procrit weekly But the blast started coming back even more so back on the 5AZA now known as Vidaza since it was passed during the time he was off of it. It is now close to one year since he was put back on the Vidaza and i just heard from the Doctor that the smears they did last week on slides – his blood cells look good, Does not see any abnormal.

Every patient is different and If we just went supportive route I think Bob would not be MDS but AML.

[covergirl]

What I tell everyone who inquires about my MDS is that there is no one cure for every patient is different. What works for one does not always work for all. I think it is the most frustrating thing about the disease.

As for now, my medical team thinks supportive care, blood tx’s, are my best course of treatment until something changes. Tx’s are presently required every 4-6 weeks and BMB’s every 4 mths. I am scheduled for another BMB the first of the month.

I pray that there is no change as after being an outpatient at the BMTransplant Unit after failed ATG treatment, I decided BMT is not something I want to do right now. I hope and pray the Good Lord sustains me with current supportive care and blesses me as he has Lindajo.

Thanks Lindajo for giving me hope this will work for me.
–cheryl

[Author]

Posts