I just discovered I have leukemia

Posted by adeleke212 @adeleke212, Dec 28, 2023

I had leukemia and i heard there’s no cure for it, so I’m going to die can anyone help if there’s treatment for blood cancer

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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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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.

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