Texas Doctors

[PaigeS]

Does anyone have personal experience with doctors in Dallas at Sammons or in Houston at MD Anderson? My dad has an appointment in Dallas, but I always hear such wonderful things about Houston…I’m torn!

Thanks!

[txnmomma]

Hi Paige. Just noticed your dad and my dad were dx’ed with MDS same month and same year.

What was wrong with the Vidaza and thalidomide? Side effects too much or blood counts were going up? jUst wondering. What classification of MDS is he?

[Carl]

Hi Paige,

I saw Dr. Miloslav Beran at M.D. Anderson Cancer Center. You can call his nurse/assistant Glenda Alexander,RN at 713-792-8760 to get an appointment. Of course there are several other Drs. that specialize in MDS that you could also see. I was impressed with the treatment and the speed at which they moved patients thru their system since there is a crowd of people there every day.
You could keep your appt. in Dallas and go to MDA Cancer Center for a second opinion like I did.
Good luck to you and your Dad.

[PaigeS]

Hi Wendy,

He really had no side-effects to the Thalidomide and Vidaza other than the fact that his platelets would hit rock bottom. They have found nothing besides tx that can bring them up.

I asked our last doctor about classification and she said he was unclassified..just severe thrombocytopenia.

[PaigeS]

Thanks Carl! I’m working on trying to get Dad to go to Houston. He hates the city and feels better about Dallas since I used to live there, his sister is nearby, and my children were born at Baylor. He’s afraid of all the traffic. :p

I know that his age will limit much of the treatment options, but the man planted a 5 acre garden this year!! He is fighting it with all he’s got. Our last Dr. really gave him NO hope
I’d like to find someone who will offer him some sort of plan, even if it’s just tx maintenance.

[Carl]

Paige,

Neither of you should just give up. There are treatment options for just about all cases of MDS and you should not rest until you find someone that will talk to you about what is best for your Dad. His age (74) is a factor, but like you said, he planted a 5 acre garden and that is a LOT more than I have done this year!!

Be persistent and do not give in to the naysayers.

[Suzanne]

Paige, I know of at least one lively patient in their 70’s that went into remission with induction and consolidation chemo. I also know that zarnestra is hopefully close to being approved for the older patients as a full chemo and that there has been a 30% inprovement rate and some remissions in the trials. Get him to someplace that does research and so has access to the experimental drugs and is a center of excellence even if he doesn’t like the traffic. Hopefully he can plant another garden or two in the future!

[Neil]

Hi Paige,
Have some thoughts for you to think about and to discuss with you dad and his doc.
The primary consideration is to have a hematologist experienced in treating MDS on his team. Another requirement is to have a hemo that has treated MDS patients with severe thrombocytopenia. It does not make much difference if his doc is in Dallas or Houston. If he were to be considering a Bone Marrow Transplant or a Stem Cell Transplant Houston would be the obvious choice.
Thrombocytopenia has many considerations.
Does he have any bleeding, bruising or petechiae?
What are his RBC, HGB and WBC counts.
There are no drugs that will grow platelets at this time. There are a few that may provide a boost in counts temporarily.
If platelet tx are used, be absolutely certain they are irradiated. Single donor platelets usually boost counts a bit higher and can last a bit longer.
Suggest taking Tylenol and Benedryl about 45 min. before the tx.
The avg body has about 5 liters of blood. About a teaspoonful are platelets. They have to find their way around the sytem and get to the site of trauma quickly to be at all effective.
Platelets counts vary from CBC to CBC. The equip. used to measure them is accurate to within 15000 on counts between 50,000 and 500,000. It takes a number of CBCs to find out where his counts will settle in and can be consideded reliable. There will be times when a very low count appears. In such an event my doc will have a slide made up and manually count them. They always come out at my current “normal level” (10,000).
The presence of symptoms is an important consideration.
Can provide you with more info—if there are no outward symptoms. There are some of us that get by with a low count while others with counts of 75,000 ahn higher have bleeding and bruising. I can provide some insight on getting along with low counts and no symptoms. Cant help much on higher counts and symptoms

[Author]

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