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[karenkay]

Hello, my name is Karen and I just found this forum. I pray you all can help me. I am 37 years old and my father, 69, has been diagnosed with MDS. However, he lives in the Chicago area and I am in the Midwest, so I must rely on his girlfriend of several years to keep me in touch and , thank goodness, advocate for my father.
My apologies for the length of this post, I hope you do not find it too boring, but I have such a need to get this out there.
My father was diagnosed in December 04 with colon cancer. He had a tumor removed immediately and biopsies of the surrounding area indicated it was contained and he didn’t even need chemo. All was going well. However, after the surgery, he developed an infection and he has been in the hospital ever since minus a few days here and there. They discovered his hemoglobin was way down, took a bone marrow biopsy and diagnosed him with MDS (I have no clue what type).
There had been a oncologist on his team for the colon cancer, but now there is just his primary doctor. Kathy, his girlfriend, has constructed several letters and made several attempts to get answers to some basic questions, type of MDS, prognosis, etc. and we are getting NOWHERE. I should mention, she and I both have power of attorney, so there should be no problem in sharing this info. When asked about the prognisis, she just says he’ll have to have occasional transfusions and these shots every two weeks. I wish I could find my notes on those shots, but I can’t right now. I recall it being some type of long acting procrit.
My question for all of you is: shouldn’t this doctor be recommending a hemotologist? They are moving him to a nursing home because his medicare wants him out of this hospital because his 25 days is over. There seems to be no major concern for the treatment of this MDS and frankly, I am confused and disheartened. He has VA benefits and insurance besides medicare, but my main concern is why no hemotologist?
I would also like to hear from anyone who has recommendations about where he should go? The VA, Loyola?
I am calling this doctor tomorrow and going to try to ask pertinent questions, but the answers she has given in the past are so bland, uniformed, blank.
I feel lost and don’t know what to tell Kathy anymore. His life is like a teeter totter. I wonder if he will ever get better. I don’t think his doctor is giving him information or taking this MDS very seriously, what to do??
By the way, his mother had leukemia and he was exposed to massive amounts of radiation in the military.
Any help would be appreciated. I am so lost.
Karen

[karenkay]

I should add, he is in the hospital now for infection control/rehab and now they want him to go to the nursing home for 2 weeks rehab. He is currently receiving his approx. 6th blood transfusion and he just recieved his shot 4 days ago.

[geebeebee]

Hi Karen,

I’m sorry for your Dad’s diagnosis, but glad you found this board. You are absolutely correct about seeing some sort of specialist that has knowledge about MDS. Try to see if your Dad can see someone who has dealt with it. It is a fairly rare disease with a lot of complexities, so experience is very vital.

From the MDS site, I found these Centers of Excellence. This would be a good place to start:

Rush Cancer Institute
Rush–Presbyterian–St. Luke’s Medical Center
Chicago, Illinois

University of Chicago
University of Chicago Medical Center
Chicago, Illinois
Richard A. Larson, MD

Washington University School of Medicine
Barnard Cancer Center
St. Louis, Missouri
John F. DiPersio, MD, PhD

It sounds like they are trying to maintain his blood counts — this may well be the best, but I would see if you can get another opinion. You really should be able to get some basic information.

Hopefully Neil will see this and send you his list of questions to ask the doctors. This was of great help to me when Mom was diagnosed.

Best of thoughts for your father and yourself. Please keep in touch so that we may be of help.

Greg

[Jimbob]

Karen,
A Bone Marrow Biopsy (BMB) is needed to determine the type and level of MDS that one has. That has to be done before any worthwhile treatment plan can be devised. It is vital that you get your father to someone who has successful experience in treating MDS. Loyola is such a place and I believe that it is also a “Center of Excellence”. Loyal and Hines VA hospital are tied together and Loyola has had more experience with treating the various forms of MDS than any other hospital or care center in the Chicago area.
Most important: Do what you can to help your father maintain a positve attitude AND do NOT be led by some of the survival rates you might find on the internet to believe that he only has months to live. They are based on old info and results are getting better almost day by day.
Jim

[JulieMarie]

Karen,

So sorry to hear about your dad. Always seems like when it rains it poors with medical things.

My mom has had MDS for about 6 months now and well just this past march there was some seminar in Chicago with Richard A. Larson, MD. When my mom returned she said it was a good seminar and that she learned a few new things. I would strongly suggest seeing this dr. Larson if possible.

[Terri]

Hi Karen, As the other said find a doctor specializing in MDS. It helps. Hope all goes well for your dad. Will add him to my prayers

[Neil]

Hi Karen,
It is imperative that he has a hematologist treating him, A GP or internist is not equiped to handle MDS.
Would suggest you/he phone Laurie Lisak at 312-942-8947. She is The Myeloid Program Supervisor. The doc she works for is Azra Raza at Rush Presbyterian. She has an excellent grasp of various MDS treatments. She also has a very large grant that has been funding her research. She is quite aggressive and tends to market her program.
There are other options in the Chicago area but think she has more experience that most. would interview various docs like one would interview a prospective employee. If you included you e-mail address will send you a list of questions dor a doc.
Getting a Bone Marrow Biopsy is the only means of diagnosing MDS and the classification he has. Potential treatments are available for all classes.
Keep in mind all MDS patients are different! We react differently to the disease and to treatments. What works for one may or may not work for another.
The mortality statistics for MDS are usually outdated. They are getting better, but there is a lot to consider when a doc determines the treatment options. There are patients who have survived for many years on periodic transfusions. Have a friend who is in his 15th year and I am in my 8th ( I am not being treansfused).
His GP or internist must be included in his treatment plan. Very few patients succumb to MDS. It is the effects the low red counts, low (or high) white counts and low platelets have on various organs that cause most of the damage. His primary doc must keep tabs on his health outside of MDS. Low reds can impact the heart, low white counts put one at risk of infection, low platelets may account for bleeding issues.
Diet, exercise and vitamins and rest are generally involved. I follow a low fat, low carb diet ( am also a diabetic). I get all the exercise I can tolerate, all the rest i need and take a multi vitamin, B complex and vitamin C.
Another point to remember is never take any form of herb/supplement/vitamin or treatment without the hemos knowlewdge. Every facet of his treatment must be discussed with his hemo!!!
This is enough for you to think about for a while.
Wioll send additional info via e-mail. Much too long for The Forum

[txnmomma]

Quote:

She is The Myeloid Program Supervisor. The doc she works for is Azra Raza at Rush Presbyterian. She has an excellent grasp of various MDS treatments.

I agree with Neil.. Dr. Azra Raza is very knowledgeable about MDS. My dad has MDS and has emailed her on several occasions. She replies in 1-2 days.

I hope you find the answers you are needing. I am still doing the same with my dad and needing answers.

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