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I just discovered I have leukemia

Blood Cancers & Disorders | Last Active: Apr 24 10:40am | Replies (38)

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@joliem12

Hello Lori, and everyone! I hope the quest to better health is getting better for you each day. I was diagnosed with DLBCL and peripheral T-Lymphoma in August of last year. I am so overwhelmed. My last R-CHOP cycle was 2 months ago. Following a scan, my Oncologist/Hematologist, mentioned a positive reaction to treatment, and remission. I was overjoyed, but almost 3 weeks later he called to say that for some unknown reason, I was missing/was never given Rituximab at one of my 6 cycles/treatments, and that I should schedule a time as soon as possible to get this 'missing' drug on its own weeks after 'my last treatment.' Which I did with much sadness and anxiety, as well as fear of the unknow of this inconsistency in my treatment. He then called 3 weeks later to say he'd like to take a closer look at my b-cells. I then had a flow cytometry which reflected 0.03% of phenotypic abnormalities. He then went on to recommend a stem cell transplant as a preventive measure. After understanding what this invasive procedure entailed, I asked about alternative treatments, including another R-CHOP cycle, monthly Rituximab, CART-T Cell etc. He insisted the transplant was the only option. I then discovered that I was only prescribed Prednisone only once or twice of the 6 treatments. When I saw him last week, I asked him about this and wanted some reassurance as to the best course of action with this new information. He reluctantly checked to confirm what I was telling him, and basically said "the nurses who administer the infusions are accountable, they should ensure you're taking your prednisone." I then told him the nurses do not prescribe meds and they just follow through on his requests, to which he tried to blame me by saying "it hasn't been easy getting you in here." I was appalled, disappointed and shocked. A case of shifting blame, so I quickly reminded him that I showed up for every infusion treatment, and that Prednisone gets called in to my local pharmacy. At that point, he offered no answers, apologies or remedial fix, instead he stated " Well we can't argue about that now, this is where we are, and we need to move forward, and I then went to the lab for more bloodwork for typing /donor matching-since I was already there. This entire situation has caused much angst, and with an already overwhelming situation, this feels so wrong, dismissive and exploitative. I am posting to please garner feedback, thoughts, etc., and would appreciate and embrace all of the above, to help me in my decision -making process. Thank you and the best of health outcomes to everyone on this platform and their friends and family members who are dealing with this and other health issues. Take care.

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Replies to "Hello Lori, and everyone! I hope the quest to better health is getting better for you..."

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?

@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?