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Can breast cancer stage 4 de novo defeated ?

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adgam2023
adgam2023 Member Posts: 7

Hello! I am from Romania and I received the diagnosis of breast cancer in September 2021 (in both breasts / stage 4 de novo with metastases in the axillary nodes / invasive ductal carcinoma / luminal B/ ER+ PR+ / HER2- / the genetic test is OK and I did not present genes mutant / I did chemotherapy, then radical masectomy of both breasts with bilateral axillary lymphadenectomy, then radiotherapy / I am currently being treated with abemaciclib - VERZENIOS, letrozole - LETROZOL ALVOGEN and goselerine - ZOLADEX.

For now, I have no metastases in other organs, with the exception of the axillary nodes. 16 lymph nodes were removed by axillary lymphadenectomy, all of which were positive for metastases, and 6 were beyond the capsule.

To feed my psyche and optimism with reality, not stories, please write those of you who have been diagnosed with stage 4 de novo and give me the good news that you are still alive as heroes and fighters. I want to know that one can live longer than the survival rate statistics for stage 4 de novo breast cancer say! I am waiting for real encouragement!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,792
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    I believe that in our constant search for security we can never gain any peace of mind until we secure our own soul. And this I do believe above all, especially in my times of greatest discouragement, that I must believe—that I must believe in my fellow human—that I must believe in myself—that I must believe in God—if life is to have any meaning. -Margaret Chase Smith

  • adgam2023
    adgam2023 Member Posts: 7
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    Thanks for the information and encouragement! Health to you, to us, to everyone!

  • adgam2023
    adgam2023 Member Posts: 7
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    I would like opinions about this case : https://journals.sagepub.com/doi/10.1177/20503245221114323

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,792
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    Ah, cannabis! Let me start by saying that I use high THC cannabis almost daily* (I live in a legal state, both adult use and medical). I use it purely for symptom relief. I have no set dosing, so no consistency in how much/little I use. Although I wish that medical research could look at this more closely, it remains federally illegal in the US so there is little solid research to support its efficacy as prolonging survival or possible cure. Your link cites a single case study. That is wonderful for the patient involved but, for me, means little in its general application to others and she received conventional treatment simultaneously . Psilocybin? I have no personal experience with that.

    TBH, I am not now nor have I been, for over 11 years, actively looking for cures or alternative treatments. I am very research/evidence based in my treatment decisions so a case study of one means little to me. If a case study of one meant much then perhaps using only AI's as treatment would suggest that AI's alone are responsible for my long term survival and lack of progression but I doubt that's the case. I do think that further research should be done but until it becomes federally legal in the US, we likely won't have any large scale research using cannabis. Cannabis has helped my appetite, induced sleep, and diminished AI pain for me but I can't give it any credit for keeping my bc from advancing. This is fromthe case study you've cited: “Currently, there is limited documented clinical evidence for the therapeutic use of medical cannabis products and psychedelics to target and treat cancer.“

    * Here is a link to our existing cannabis thread: https://community.breastcancer.org/forum/79/topics/874792?page=14#post_5772986

  • maggie15
    maggie15 Member Posts: 884
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    Hi adgam2023, This article references preclinical trials and an anecdotal case of the benefit of cannabis for slowing or stopping the progression of cancer. Experiments done in a lab on cells or animals do not necessarily have the same results and may even be harmful when applied to humans. Individual success stories unfortunately are not subject to the rigors of clinical (done on humans in a scientifically controlled situation) trials, the standard for approving regimens for treatment. It's useful to keep an eye on ideas and possible treatments in the pipeline but trying unproved treatments can be a waste of money and dangerous.

    Exbrnxgrl has provided good information on how cannabis can be used to alleviate symptoms of breast cancer and side effects of its treatment. It is an option for improving quality of life while dealing with cancer. As far as treatment with "promising" therapies goes, to quote my pulmonologist, "Mouse lungs are not human lungs." Sometimes basic research makes it to the treatment stage but it takes a long time for that to happen. Enrolling in a clinical trial is one way to take advantage of a potential treatment after evaluating the risks and possible benefits.

  • elderberry
    elderberry Member Posts: 1,058
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    maggie15: Smoking is smoking even if it is cannabis and not tobacco. Your lungs will be harmed. When I do THC I do it in the form of bottled iced tea or gummies but I would caution new users to be VERY CAREFUL about dosage. You won't kill yourself but you could have some very uncomfortable hours.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,792
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    Good points, elderberry. I rarely smoke and only do so if I need immediate relief as the onset of edibles/ingestibles varies greatly for me. Dosing is important to pay attention to and if you find yourself too high, CBD (without THC) will help counteract this. I found vaping, which provided immediate relief, to really make my throat sore.Though legal in CA, I know some people who still buy on the black market because it is much cheaper. That involves too many unknowns for me. I need to know THC content per dose, strains, etc.

  • adgam2023
    adgam2023 Member Posts: 7
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    I was recommended total hysterectomy (uterine and cervical removal) with bilateral anexectomy (removal of both ovaries). Are there any of you who have done such surgery and what would be the benefits? Initially I was told that only annexectomy should be bilateral to suppress hormonal activity (ER and PR) but now you must be totally Hysterectomy (I was told that the uterine uterine produces hormones ....) are not fully clarified. Can someone help me ?