Chronic leukemia. Terrified bc I can’t tolerate chemo

Posted by lesliem7600 @lesliem7600, Wed, Mar 6 6:40pm

Hi!
I had stage 4 metastatic lung cancer and given 4-6 months to live. 11.yrs ago. I took over 10 chemotherapy treatments and didn’t take 3 and 6 bc I felt too toxic. I also had 16 radiations in my ankle where the tumor was found. I truly believe that I’m still alive bc I didn’t take chemos when I felt too toxic. I felt the chemo would kill me and not the cancer. Baruch HaShem I’m the only one in the group of 350 that survived the protocol. My Hospital is Sloan Kettering. I went to Mayo , MD Anderson and several others after my diagnosis to find a dr that felt he or she could keep me alive. I decided on Sloan who’s chemo was the strongest and cicplatnum

Liked by lesliem7600

Oops I pressed reply accident. Anyway , I was just diagnosed with chronic leukemia and tried the Hydroxyura and had such a violent reaction They took me off because I felt horrible pain and razor blades on my mouth and in my upper body. I had breathing issues and just got over my 7 bout of pneumonia. I have had surgery removing half my lungs and copd etc.
I’m terrified to take imatinib.Mesylate 400 mg. The side effects are brutal and I’m in the middle of a trial for 11 years with my brother who is trying to steal my dads estate. When I was diagnosed my dad was in Sloan in the next bed dying from cancer. After my dad passed 2/14/08
My brother terminated my medical insurance and I have spent all my energy and 3/4 of my funds fighting him. TBD pressure is horrific. I can’t deal with more pain than I live with already. My nightsweats keep me up all night
I was in court today and tomorrow. I can feel the blood count numbers moving in the wrong direction. I’m not ready to die. Does anyone know an alternative therapy for chronic leukemia? Thank you and may this site give us the support and information that we need to make accurate decisions. Bless you all and if you can help me I would appreciate it.
Thank you ,
Leslie

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@lesliem7600 YouTube and online check out Chris Beat Cancer. Stories how people used nutrition to cure their cancer. There's also a book. Nutrition has helped with my blood disorder.

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Hello @lesliem7600. I would like to invite some other members who have talked about chronic leukemia to do this discussion. @pokeyspride2002, @survivorjan, @robbhiller, @bflattenor, @81ue, have all talked about a variation of leukemia and may be able to share their experiences with what treatments they received.

@lesliem7600, is the chronic leukemia you are speaking about CLL? If so the listed treatments on https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/diagnosis-treatment/drc-20352433, include chemotherapy, targeted drug therapy, bone marrow transplant, and immunotherapy. Have you discussed any of these other treatments with your hematologist?

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Depending on where you live, there is a CLL leukemia and lymphoma society in Minneapolis and a April 27 all morning info program on how to deal. If you can't make it to one of those, I would suggest an expert in Dr. Sameer Parikh at the Rochester Hematology department. He was my doctor through everything and is just fantastic. Blessings to you on this journey. Robb

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@JustinMcClanahan

Hello @lesliem7600. I would like to invite some other members who have talked about chronic leukemia to do this discussion. @pokeyspride2002, @survivorjan, @robbhiller, @bflattenor, @81ue, have all talked about a variation of leukemia and may be able to share their experiences with what treatments they received.

@lesliem7600, is the chronic leukemia you are speaking about CLL? If so the listed treatments on https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/diagnosis-treatment/drc-20352433, include chemotherapy, targeted drug therapy, bone marrow transplant, and immunotherapy. Have you discussed any of these other treatments with your hematologist?

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I don't have CLL, I have B-cell prolymphocytic leukemia (B-PLL). Before diagnosed with B-PLL I was diagnosed leukemia and handed booklets on 'non-Hodgkin Lymphoma'. I was then dianosed Marginal Zone Lymphoma. Fludarabine (chemo) didn't work because I guess it had to do with my 17p deletion and TP53 mutation. They were afraid to give me Rituximab because it is a rough drug that required observation in the hospital so I never got it and …. Anyway, after the chemo didn't work my dr. got me on Imbruvica which is approved for 17p deletion CLL folks. I then went to a specialist and they diagnosed B-PLL. B-PLL got tossed around in medical categories It's somewhere similar to on a spectrum to other things –>CLL (B-PLL) and MCL (it can be closer to CLL 'leukemia' or closer to MCL ' mantle cell lymphoma'). Seems like B-PLL is not welcome in either category. One website called Up to Date said "B-PLL is an extremely rare disease, comprising far less than 1 percent of B cell leukemias . Its rarity has become increasingly apparent as advances in diagnostic criteria have refined the diagnosis of B-PLL and excluded cases of mantle cell lymphoma, atypical chronic lymphocytic leukemia (CLL), and CLL/PLL (defined as between 15 and 55 percent prolymphocytes) " B-PLL prolymphocytes comprise greater than 55 percent of the cells in the blood and bone marrow.

How did I get to treatment? I had NIGHT SWEATS. I had FATIGUE and WEAKNESS. I had a balloon of the swollen SPLEEN. I was hospitalized while they tried to figure out what would work. My dr. said 'what's the rush?' when it came to suggestions of having stem cell transplants. The plan is treat with imbruvica and when that fails get on the next latest and greatest drug. They say to keep treatment options in reserve – plan A, plan B, plan C. My wanting to blast cancer with everything they got is not what drs. recommend. Stem cell transplant is at the back of the list (I hope) for as long as possible. I I think the drs. were amazed that I made it. Imbruvica works for me.

If you have CLL there are many clinical trials out there for the CLL and CLL/SLL folks – really good ones that are with imbruvica or the next latest and greatest drug – Venetoclax (which I've got my eye on for if I have to move on to the next drug). Check that out (edit to add – clinical trials in my understanding give you the drugs for free)

And finally, you have my wishes for success in court, that is a very stressful and terrible thing to have hanging over you. As impossible as it seems, you will need to find things that you enjoy to give yourself a much needed break from that stress. Little things even like going outside to experience the beauty of nature, or having a special treat of your favorite coffee, wine, pastry etc. Or a big things like attending a party with friends.

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