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DiscussionI just discovered I have leukemia
Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (41)Comment receiving replies
Replies to "Hello Lori, and everyone! I hope the quest to better health is getting better for you..."
@joliem12
Oh boy. How frustrating for you. I can only second Lori’s recommendation that you seek another medical opinion. It’s disheartening when you place your trust in a physician and things go awry.
In most cancer treatment, facilities and hospitals, there is usually a patient representative whose responsibility is to sort out this kind of situation for the patient’s benefit. I don’t know if your treatment facility has such as staff person, but it would not hurt to ask. Sometimes they have a medical social worker who knows how to find the right person for you to talk to.
It may seem unfair for that responsibility to fall on your shoulders, but I hate it that this happened to you and would hope that this would alert the facility at the very least to opportunities for improved communication and treatment protocols.
Thank you for your warm wishes. I wish the same for you and the best possible outcome.
Will you please let me know how this all turns out for you? What is your next step?
Years ago, I was going through a different Cancer, but experienced negligence on the part of the specialist. I had been referred to someone else and told him about what had happened. He wisely said… “Do not waste your energy on anger, you’re going to need all your energy to fight this cancer!”
this is the best advice I had been given throughout my cancer journey. Anger sucks mental, emotional and physical energy. Anger is only useful unless it is directed towards positive change in the system.
Understanding hugs to you on this difficult journey.
Welcome to Connect @joliem12 Wow, you’ve been on quite an adventure with your current doctor and the inconsistent treatments with not one but two meds? If you went for infusions but they failed to give the rituximab, what was in your infusion IV? Just saline? My first thought was this surely doesn’t inspire a lot of confidence!
It’s not my intention to cast a shadow on your care team but knowing first hand the potential complications and intricacies of having a bone marrow transplant I’d want to make sure you are with a group who has done many of these with a record of positive results! There is no room for error with Cart T or SCT/BMT procedures/treatments.
It might be in your best interest to seek another opinion on your diagnosis and treatment. I’d suggest visiting a larger teaching hospital….and of course, I’m going to recommend Mayo Clinic. However, most states will have a larger facility with a good track record of stem cell/bone marrow transplants.
Since your local lab did the blood work for typing/donor match is this a clinic that does the transplant?