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Low Platelets: Diagnosis to be confirmed

Blood Cancers & Disorders | Last Active: May 22 2:39am | Replies (87)

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@rockitman

Thank you for giving me some hope with my diagnosis and hope that the Rituxan will work.
Does the Rituxan reverse this immune system problem, (fix it) or do you stay on Rituxan, not sure what happens if Rituxan does work for me. My current Dr. doesn't really go into any detail about my treatments.
As I said previously Promacta and Prednisone did nothing for me.
I will be going to Jacksonville FL. I live 2 hours south of Mayo on the east coast, Titusville FL.
My wife cannot drive any longer and need to know if I end up staying for a while in Jacksonville if affordable lodging is available.
My fear is that at 74 years old I won't be acceptable as a Bone Marrow transplant recipient.
Even though I am in excellent physical condition other than this Bone Marrow issue.
My current Dr said "NOT GONNA HAPPEN" too old.
Looking forward to meeting the DR's at Mayo Wednesday the 19th.
Again thanks for the encouragement.

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Replies to "Thank you for giving me some hope with my diagnosis and hope that the Rituxan will..."

I’m so glad you’re getting a second opinion with Mayo. To be told, “Not gonna happen” is pretty premature. I personally know of 2 people in their mid 70s who have had successful non-related donor stem cell transplants. (Allogenic transplants). It is dependent on the overall health of the individual and that is for you and the doctor to decide together. It’s not an easy journey but worth the risk if it’s the only option for a longer and healthy life.
I was 65 when I had my transplant. Another woman who was having her transplant at the same time, was 73. She and I are still great friends though we live a 1,000 miles apart.
I’m sorry your other doctor isn’t more forthcoming. I obviously can’t predict the outcome of your appointment but I can assure you that you’ll have a more positive interaction with your hematologist at Mayo.

For me, the rituximab quieted my immune system and the 4 treatments were all that were required. I was also on IV Steroid infusions for several months. But the issue never repeated itself thankfully. Rituxan (rituximab) is very affective for quieting the B-cell action. But our situations are different so I don’t know the duration of your treatment. It could all change after your Mayo appointment anyway. So that will be a good discussion to have with your Mayo doctor.

I’ve provided some information about visiting the Jacksonville campus and lodging. There are conversations from other members who live in Jacksonville or attended that campus who can give you some input.
https://connect.mayoclinic.org/discussion/mayo-clinic-florida-campus-advice/
https://www.mayoclinic.org/patient-visitor-guide/florida
Jacksonville lodging: https://connect.mayoclinic.org/discussion/jacksonville-lodging/ --

There are several discussions regarding:
A Few Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/ --

One more piece of information is to get in contact with the Concierge Services at Mayo. They are located in Rochester but they are familiar with all the Mayo Campuses and are really helpful in finding lodging and helping with travel plans and such. It’s a free service and I highly recommend it!

Concierge services
Phone: 507-538-8438
Email: concierge@mayo.edu

Do you have all your medical records and information for the new doctor? Often they will request that new tests be preformed even though you have your own records if more detail is necessary to complete the diagnosis.

I believe you have a Rituxan infusion on Tuesday. That’s good to get another treatment in before you leave.
I’ll be thinking of you Thursday! I’ll actually be in the Rochester Mayo on Thursday for my 3.5 year post bone marrow transplant check up! If one is in your future, I’ll be right there to guide you along as well as a few other members who have walked that walk!
You’re not alone in all of this so let me know how it all goes, ok?