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long term survivors

2

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #22
    https://csn.cancer.org/discussion/comment/1725102#Comment_1725102

    I had neuroblastoma presenting as a Wilm's tumor on my left kidney. My kidney, adrenal gland, spleen and half of my pancreas were removed with the tumor. I received 3500 pads of cobalt induced radiation along with actinomician-D initially. Then follow up treatments for 2.5 years. They zapped my entire torso front and back. I've since had adenoma in my stomach and carcinoma and melanoma on my chest. Do to radiation rot I have had my gallbladder, appendix, left ovary,left and right felopians, cervix and uterus removed. I've also had over 80 intestinal polyps removed and numerous tumors, cysts and growths for various places in my body. It has not been a fun trip. Quality of life, due to health has been poor since cancer

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #26

    I had a kidney tumor. A neuroblastoma called Wilm's tumor. Congratulations on 42 years!! A mighty long time.

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #27

    I can't imagine what you must have gone through. I fortunately had another kidney to rely on. We only get one brain!! It must have been very frightening

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #28

    There are LOTS of WACKY side effects. And little to no help from the medical world. Always hear with an ear.

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  • quenonamican
    quenonamican CSN Member Posts: 4 Member
    #31

    i'm 20 years post acute lymphocytic leukemia this year, diagnosed at age 3. remissed 2 months in & got pneumocystus pneumonia (and followup broncoscopy) during the following 18 months of remission. don't know most of my chemo records because the hospital i was treated at lost my records when they digitized. have been in the clear since 2014!

    i still have weird side effects like tight achilles tendon (compounded by hEDS) and consequential bunions, and onychomadesis on my toes.

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  • rhabdodino
    rhabdodino CSN Member Posts: 6 Member
    #33
    https://csn.cancer.org/discussion/comment/1725085#Comment_1725085

    I'm close to 51 yr survivorship at 52 yrs old. We are dinosaurs, hence my name. Hardly anyone survived back then. You are the longest I've ever heard of. They were really just experimenting with our treatments. The doctor told my parents "We can try chemo, radiation and surgery and she may die or we can do nothing and she will definitely die." Not much of a choice. Glad to meet you.

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #34

    Hello there to you Rhabdodino. Rinkydink is my father's nickname for me. Other than during the 2 pregnancies that I carried to term, I have never been able to reach 100lbs. Currently 84lbs. at 5'3" height. Ergo, he would say that I am just a "Rinkydink outfit". I too have never heard of another survivor with my survival longevity. It's been a tremendously long, hard and lonely road. That is non-stop. I could tell 3 medical treatment nightmare stories of 3 different medical providers from just the past 2 weeks! And yes, the option given to our parents was, treatments that make you sick and possible death or death. With ZERO clarity as to HOW sick and for HOW LONG we would be sick. In the beginning this was PARTIALLY out of ignorance. They didn't know because we were the first and only time could tell. But now, although the ignorance still exist, it's UNACCEPTABLE!! The data is available, the studies have been done, we the first, have CRIED OUT. Now the ignorance is a direct result of a politically and financially motivated CHOICE to NOT teach medical students how to recognize and treat the damage created from cancer treatments. It is a sad but true TRAVESTY.

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  • rhabdodino
    rhabdodino CSN Member Posts: 6 Member
    #35

    Totally agree. Doctors look at us like a deer in headlights. They are progrmed to treat the one issue you are having that day and everything else is just noise to them. I am a disabled 30 year RN and I saw it everyday. The holistic approach is not what they learn and God forbid one of them do a little research. I can so relate and it's nice to chat with someone who understands.

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  • superwoman2000
    superwoman2000 CSN Member Posts: 4 Member
    #36

    I feel the situation is improving, but unfortunatelly not at the right speed. Did any of you had to monitor your heart & LVEF due to chemoterapy? Nowdays they are giving the heart children medicines along with the chemo, compared to before.. usually doxorubicin is the one causing problems..

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  • rhabdodino
    rhabdodino CSN Member Posts: 6 Member
    #37

    I live in Florida too. I am awful with calls. Prefer texting. Will that work for you?

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  • rhabdodino
    rhabdodino CSN Member Posts: 6 Member
    #38
    https://csn.cancer.org/discussion/comment/1725177#Comment_1725177

    I have had tachycardia since I was 19 but No one made the correlation until I went to a Pediatric Aftercare Clinic where they usually do immediate aftercare follow up. I had an amazing ARNP that researched some things for me and gave me a list of labwork and tests I should have based on my chemo regimen.

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  • rhabdodino
    rhabdodino CSN Member Posts: 6 Member
    #39

    There has to be someone who is doing late effect monitoring and treatment but I sure haven't found them.

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #40

    I do not feel it has gotten better over time. Having specialist for specific ailments or body parts is good on the one hand. But they have pieced our bodies out to so many different doctors who might be GREAT at their specialty, but have LITTLE understanding outside of their specialty and who absolutely do NOT communicate with each other, especially once people turn adult. General practioners are useless beyond a flu shot or a referral to a specialist. Then there's the insurance interference be it private or government. Doctors are so busy during your visit checking the required boxes for the insurance company that your alotted time is used up and you got no help. It really is ridiculous and I want to puke when I hear people say that America has the best health care available. If that's true, the world is screwed!

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #41

    Here's another part of the problem. My granddaughter has Cystic Fibrosis. During her lifetime, she's 19, a miracle drug came out called Trikafta, by Vertex. It HAS done wonders. It costs $ 30,000.00 per month for 90 pills in America. Vertex IS the only manufacturer worldwide. In Australia if you are on their government insurance program, the cost for the same amount of the same medicine manufactured by the same company is only $SIX dollars per month. If no insurance and paying out of pocket it's only $NINE !!!! And that IS a part of the problem.

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