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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @justmeb5, I really do feel it’s my privilege to be able to help out anyone enduring blood cancer treatments or a bone marrow transplant. When going through my own AML/BMT odyssey 6 years go my husband and I had no idea what lay ahead. Fortunately I had great medical teams, both locally and at Mayo-Rochester who were very forthcoming with information and support.
But my greatest mental boost was being able to speak with people who actually experienced what I was going through at the time. They gave me hope! I realized how important it can be to have a mentor, someone who has walked the walk and understands from a patient’s perspective.
It can make all the difference in the world to speak with someone who truly understands the range of emotions a patient is feeling with a frightening diagnosis.

That’s what makes Connect such a special forum! Most everyone here, or a loved one, has gone through some medical drama. They’ve reached out for support, encouragement or hope and stayed to pay it forward! We are all lifelines for each other. So I’m really happy that you have joined Connect and finding it to be a safe haven.

As a patient you have every right to know exactly what’s going on with your health. I think you’re wise to seek a 2nd opinion with a new hematologist. If for nothing else, confirmation of the diagnosis and potential treatment options. Let me know if I can help in any way, ok?

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Replies to "Hi @justmeb5, I really do feel it’s my privilege to be able to help out anyone..."

Thank you for inquiring about our case update. We have gone through 10 weeks of Iron infusions with 5 weeks of B-12 shots. All went well with that. Red cell count up a bit. Unfortunately, white cells remained the same, low. We found an excellent hematologist, who is working with us. We see her next week to discuss Vidaza. So, we are very interested in whatever information we can get from this site. About the Vidaza, it seems once you're on it, it continues for a long time. That does not make sense to us. We will be asking if the Iron transfusion can be continued as needed. Do you have any information about this procedure? We need lots more info on Vidaza. Are there any other drugs that might bring up levels? So far, we have no blasts. Thank you for all your help.