interesting protocol differences

[patti]

Thought I’d share with you all some interesting things that have happened this past few weeks. We visited mom’s new doctor for the second time yesterday and she was well in need of a transfusion. Unfortunately, I wasn’t too on the the ball when we switched and I forgot to ask if he’d give us irradiated blood. When we mentioned it yesterday he absolutely put his foot down and said, “no” and said if I wanted it I’d have to switch mom back to her old doctor. So we did. Thankfully, we’ll still be seeing the nurse practioner, whom we really like, for the most part. But what I learned about seeing another doctor is important, I think.

Mom’s old doctor had a totally different protocol for MDS. His feeling was to treat it with vidaza while it was still MDS. The new guy that we just dumped had a totally different take. He felt like it’s better to just manage the MDS and do nothing until it changes to AML (if it changes). His reason was that he believes historically people achieve remission in greater percentages from the chemo used for AML. He felt like the success with chemo for MDS was so low that it wasn’t worth putting a patient through.

Those are two very opposing view points that I thought really worth sharing because how many of us have different protocols from our MDS neighbor? Nothing is really that consistent, I don’t think. But it also made me want to research more about the treatments for AML. I thought about Suzanne’s success with chemo AFTER she got AML. I guess what the second guy said started to make a lot of sense to me.

Anyway, thought I’d share that with you all and see what your doctor’s are telling you. I’m just curious to what the different protocols are out there. Any willing to share what their doctor’s have said?

Patti

[sugarwhale]

Dear Patti,
I’ll tell you what my mom went through. She has CLL and MDS. We started out with a really awful doctor. He did a BMB and told my mom that the CLL was no problem, but that she had MDS with chromosomal abnormalities. “Make your final arrangements!” he said. We had a million questions. He just walked out! He never did answer our questions. I tried to learn all I could, but I’m no doctor.
Finally, we switched to our fine doctor at a “Center of Excellence.” He TALKS to us. He’s KIND. He answers our questions. When my mom’s blood counts started catapulting downward, he gave her a try with rituxan for CLL. At her age, he wanted to try the easiest things first. Sadly, the CLL wasn’t the problem. Then he tried Vidaza for MDS. It worked only for a short time. Next he tried thalomid. This worked for a longer time, but there were some nasty side effects. Finally, he tried Valproic Acid, which didn’t work at all. There were other things he could have tried, but he didn’t want to put my mom through anything that wasn’t necessary or that would harm her. For this reason, he did not try Decitabine. He said my mom would be OK with just transfusions until the revlimid came out. About a month ago he approved of our idea to try Essiac Tea. On Friday, he’ll help my mom get the Revlimid.
We love our doctor. We feel he is honest with us. Each time he tries something for my mom, he wants to be sure it’s the right thing for her. We feel that he cares. When he told us that the Essiac Tea might help (It has!), there wasn’t any ulterior motive. I mean, he certainly doesn’t own any stock in health food stores! We love this doctor, because he hasn’t given up on us. I think he tries a different protocol for each patient based upon their individual needs. I hope this helps, Patti! Happy New Year to you!
~~~ Janet

[kristyk]

Hi Patti
I agree that protocols differ greatly. Really I think you hit the nail on the head for the sense of frustration I was feeling the first 9 months after my mom was dx with the MDS. I was having a difficult time just waiting for her progress to AML and felt this urgency that we needed to be doing something NOW. Since her dx she was being monitored by two doctors. Her local oncologist Dr. P, who made the diagnosis, supervised her supportive care those 9 months, and who referred her to his colleague Dr. D, the director of stem cell and bone marrow transplantation and lead hemotologist for the leukemia and lymphoma treatment center. Both doctors are with the same hospital system and cancer center, it’s just that local Dr. P practices at the smaller site out in the suburbs near my mom and is regular oncologist who treats all cancers, Dr. D “downtown” at the Big Center. 2-28-05 Dr P made the diagnosis( RAEB-t vs AML, the bmb results were sill pending) and sat down with us and did a diagram for her treatment, which was the Induction chemo. We went home to pack and await his call as he wanted her in a bed downtown ASAP to start the induction process. So we went home and waited and waited. He called late in the eve and essentially put on the brakes. He had consulted with Dr. D who obviously advised to keep Mom on supportive care and get to get her downtown to consult with him a few weeks later. ” we are not going to do induction at this time with you, we think you have MDS at this time and we can treat you with supportive care but I want you to see Dr. D to explore future treatment options”. I ask Dr. P, “what is the difference between MDS and AML” as at the time I had no clue to any of this, and he says “hmmm, frankly it’s the difference between and train wreck and a car wreck”.
Anway, Dr. P the regular oncologist wanted to jump into drastic treatment at the get go. Dr. D, the hemotologist, who once he ruled her out as transplant candidate, pushed to wait until she progressed to AML to start anything except procrit and hydrea along with supportive care.
So even between two colleagues under the same institution, I sense there was some initial differences on how to treat my mom. Ultimately I think Dr. P followed lead of Dr. D who is the expert and main guy for hemotology disease in our city.
Has Dr. D been “right”? I wonder often. I hope so. Is the protocol different from individual to individual? I don’t know. I have also done some research and have read that AML that transforms from MDS has poorer treatment response to chemo and prognosis than other AML’s. But I don’t know if that is related at all to whether or not a person has tried chemo’s while in MDS stage. It is perplexing to me!

I have babbled on again…but I think your thoughts were interesting and I too keep wondering does anyone( doctors) really know what they are doing for sure out there. One does wonder, but good to have some faith in your treatment team regardless!
Take care
Kristy

[hope&faith]

The doctors for my dad in UCSF have said that he needs intense chemo first week of january. Everyone is saying that he has not progressed to AML, but they want to move onto the 1week chemo with 3wks in the hospital for recovery. He went for a second opinion at stanford with DR. Greenburg and he concured. I am so confused the last appt. he had they said he did not need a transfusion, so what is the rush for chemo???

[patti]

Kristy,

You made an interesting point I hadn’t heard or read.

“I have also done some research and have read that AML that transforms from MDS has poorer treatment response to chemo and prognosis than other AML’s. But I don’t know if that is related at all to whether or not a person has tried chemo’s while in MDS stage.”

I think I’m going to talk to mom’s doctor about this. It’s very interesting to hear what different doctor’s are saying. I get the sense that although everyone is different with this disease that it’s actually the doctor’s personal opinions or choices that dictate which treatments they decide are worth it. I think that’s weird. You’d think the different COE doctor’s would have a standardized protocol that other doctor’s could treat from.

I’m also curious if there’s anyone on this list whose had a someone over 75 do the chemo and succeed. I know mom’s age is against her but I wonder how much. She’s also in better health than most people otherwise.

Janet, your mom’s first doctor sounds like ours now. We live in the wrong state I think (no, I know that! I’ve known that for years!!)

I appreciate all the input. It’s very intriguing.

Patti

[Jack_dup1]

I have been to several Dr. a received several different opinions. My local hemo/oncologist says start Vidaza now, my MDS specialist says do nothing now. I have a WBC of 40.8. The MDS guy says to wait until things progress or should I say digress futher. CMML is a little different, it is not considered by some as MDS, but a combination of MDS/MPD, which makes it harder to treat.
Still in state of confusion,
Jack

[Author]

Posts