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List of all of the Side Effects I deal with that wreak my QOL

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Comments

  • macb04
    macb04 Member Posts: 756

    Melanie, I agree with everyone here, don't feel like you missed anything by not taking the Armidex. My friend Mary was 32, diagnosed with IIa, did the whole thing, cut/poison/burn of "treatment ". Took Tamoxifen for a year. Died by age 34. She went through absolute hell those last 6 to 8 months. They gave her C-diff twice when they made her acutely ill with the poison, then she got infections due to Neutropenia, then antibiotics, and then C diff and hospitalization again. . I begged her to try other things like IV Vitamin C, but she wouldn't do it because her "doctors " didn't approve.

    Frisky, have you looked at Intermittent Fasting as a way to improve blood sugar regulation? I saw a lecture about it a few years ago by Dr Longo who did much of the research about it. I have been doing that most nights ever since. I eat my last meal around 7pm, and don't eat again until 8 or 10am the next day. It was hard at first, but my body adapted after a while. I don't even notice it anymore, and I don't get the blood sugar crashes I used to get.

    I think some people have to gradually space the over night fasting length very slowly longer depending on your blood sugar levels. Might be good to speak to your healthcare provider if unsure how to do this safely. What I thought was really great was the studies were done on diabetic patients.

    We need to share this amongst ourselves. Our bc industry "healthcare team" should be sharing this with every single woman that comes through the door. Anyone told this info recently, EVER? These article I cited came out on Medscape April 2016. I hope they have finally started to think of more than the epically mediocre sucess of slash/burn and poison of tradional bc care that has been the "War on Cancer" I want my suffering , everyone's suffering to mean more than some CEO got a big fat check.

    We deserve so much better. There is better out there.

    ============================================================================================

    Intermittent fasting may help fight type 2 diabetes

    https://www.medicalnewstoday.com/articles/323316.php

    Planned intermittent fasting may help reverse type 2 diabetes, suggest doctors

    _________________________________________________________________________________________________________________________________________________________________________________________________________________________________

    Cancer and Fasting / Calorie Restriction

    Can fasting or calorie restriction help my body fight cancer? Could it also help cancer treatment be more effective?

    https://osher.ucsf.edu/patient-care/integrative-medicine-resources/cancer-and-nutrition/faq/cancer-and-fasting-calorie-restriction

    Prolonged Nightly Fasting Cuts Risk for Breast Cancer Return

    https://www.medscape.com/viewarticle/861319

  • rubyredslippers
    rubyredslippers Member Posts: 94

    Thanks Mac for those links. I'll read them with interest.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    I did intermittent fasting too. Also did Fasting Mimicking Diet prior to each chemo. The results of chemo, for those who fast prior, are boosted (in mice) they are doing the human trial now.

  • Frisky
    Frisky Member Posts: 1,686

    thank you Mac and Santa for the links and helpful reminder regarding the intermittent fasting. I can definitely do that since I eat dinner around 5 or 6 pm....

    but the key to explore is the methionine restriction....could that be the key to starving and weakening cancer cells, which would make them, then, more vulnerable to attacks by what we already know to be anti-cancer natural compounds?

    Let's all analyze Joe Tippens story and his miraculous cancer cure with FZ...

    as he tells it, he had been fasting for months, due to medical reasons, and had lost I think 40 or 50 pounds in the process...he basically discounts this important detail, which has been affecting how people have been applying his protocol, including all of us on the FZ bandwagon....With terrible outcomes....

    Could it be that it was the starving of all cells—including cancer cells that consume more energy than the rest since they are all growing out of control—that produced such a remarkable and dramatic result?

    Could that explain why FZ works so inconsistently? Could it be that FZ is effective when people happen ( or whatever reason) to be restricting food intake or specifically proteins?

    It's worth exploring....it sure makes a lot of sense to me and would logically explain the inconsistent results....the hard part is of course the starving, but maybe between restricting the timing and the restricting the proteins, a patient could experience, at least, a weakening and a slowing down of the cancer growth and metastasis...

    I say It's worth trying...we'll see what happens...

  • macb04
    macb04 Member Posts: 756

    I don't know if you ladies know about Artemesia and it's anticancer effects. I take it twice per day for 10 days in a row every 2 to 4 wks fo it's anticancer benefits. Kind of like insurance.

    https://www.europeanpharmaceuticalreview.com/news/67042/ala-artemisinin-cancer/

    ALA-artemisinin combination therapy for cancer identified

    https://link.springer.com/article/10.1007/s13659-018-0162-1

    Antitumor Research on Artemisinin and Its Bioactive Derivatives

    Send to

    2019 Dec 4:e1900240. doi: 10.1002/ardp.201900240. [Epub ahead of print]

    Artemisinin-derived dimers as potential anticancer agents: Current developments, action mechanisms, and structure-activity relationships.

    Zhang B1.

    Author information

    1
    School of Chemistry and Life Science, Anshan Normal University, Anshan, Liaoning, China.

    Abstract

    Anticancer agents play a pivotal role in cancer treatment. However, most of the anticancer drugs currently used in the clinics have a severe anticancer scenario, as well as low specificity and fatal side effects. Thus, there is an urgent demand to develop novel drugs with great efficacy, high specificity, and low side effects. Artemisinin and its semisynthetic derivatives are mainstays of chemotherapy against malaria, and artemisinin-based compounds, especially artemisinin-derived dimers, also exhibit excellent in vitro and in vivo anticancer activity. The structure-activity relationship (SAR) demonstrated that the linker between the two artemisinin moieties influenced the anticancer activity significantly; so, the rational design of the linker may provide valuable therapeutic intervention for the treatment of cancer. This review outlines the potential anticancer activity of artemisinin-derived dimers tethered by different linkers. The SARs, as well as mechanisms of action, are discussed to provide insights for the rational design of more effective dimers.

    Send to

    2019 Dec 4:e1900240. doi: 10.1002/ardp.201900240. [Epub ahead of print]

    Artemisinin-derived dimers as potential anticancer agents: Current developments, action mechanisms, and structure-activity relationships.

    Zhang B1.

    Author information

    1
    School of Chemistry and Life Science, Anshan Normal University, Anshan, Liaoning, China.

    Abstract

    Anticancer agents play a pivotal role in cancer treatment. However, most of the anticancer drugs currently used in the clinics have a severe anticancer scenario, as well as low specificity and fatal side effects. Thus, there is an urgent demand to develop novel drugs with great efficacy, high specificity, and low side effects. Artemisinin and its semisynthetic derivatives are mainstays of chemotherapy against malaria, and artemisinin-based compounds, especially artemisinin-derived dimers, also exhibit excellent in vitro and in vivo anticancer activity. The structure-activity relationship (SAR) demonstrated that the linker between the two artemisinin moieties influenced the anticancer activity significantly; so, the rational design of the linker may provide valuable therapeutic intervention for the treatment of cancer. This review outlines the potential anticancer activity of artemisinin-derived dimers tethered by different linkers. The SARs, as well as mechanisms of action, are discussed to provide insights for the rational design of more effective dimers.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    When I did my C IVs at the beginning they infused artemesinin prior to the C. Then the US prohibited artemesinin IVs from being compounded so they switched me to oral artemesinin prior to C. Both artemesinin and hyperbaric Ox boost the pro-oxidant activity of C.

    Frisky have you considered high dose C? Many Naturopathic physicians can provide it... possibly something a doctor could order and get covered...?

  • Frisky
    Frisky Member Posts: 1,686

    1. Santa, I've reached the conclusion that no therapy can be successful unless the cancer cells are starved—in some way—that is what the COC attempts to do by blocking the various pathways, what Luongo et all recommend with reduced and controlled eating, what all the studies regarding the blocking of methionine point to, and what I'm convinced made the difference in Joe Tippens miraculous cure.

    After the cells are starved and weakened it's the time to kill them with therapies such as oxidative vitamin C infusion or low dose chemo...if cancer cells are strong and thriving it's apparent that even the strongest poisons that kill us, don't affect them at all...as proved by progression even following stage 1 and 2 toxic bombardment...

    People that stop eating due to cachexia don't benefit because at that point they have been already severely compromised by toxic treatments and therefore can only succumb.

    I was taking artemisinin but had to stop. I developed aches and pains in my liver.

  • macb04
    macb04 Member Posts: 756

    I get headaches sometimes when I take Artemesia. Liver stuff can be one of the potential side effects , as am sorry had happened to Frisky when she used it.


  • Frisky
    Frisky Member Posts: 1,686

    Update: I have managed so far to stop eating altogether for 12 hours, and to completely eliminate my intake of methionine rich foods.
    Went to a Japanese restaurant with a friend on Sunday, and instead of the sashimi platter, I ordered a mushroom soup, hijiiki salad, and spinach with a sesame sauce....That was plenty for me.

    I have been meticulously measuring my BS after each meal to ensure my carb rich diet doesn't thrown off insulin levels...so far so good.

    I'm enjoying the variety of foods in my new diet and I'm not starving, even when I have to wait a few hours in the morning.

    Eating seaweed right after breakfast has made a huge impact on my energy levels.


  • santabarbarian
    santabarbarian Member Posts: 2,311

    Sound like it's a good plan for you Frisky! I do not think veggie & nut carbs effect BS as much as white flour or sugar carbs....

  • DeeBB
    DeeBB Member Posts: 71

    I too, have several side effects. I only took Tamoxifen for a couple months and the cramps, fatigue and off balance feeling was ridiculous. It's been about 8 or 9 months since I've taken it and still have the dizzy feeling, fatigue is not near as bad. I recently went to the dermatologist to get a full body check, just to be safe and I've spent a lot of time in the sun over the years. Sure enough, a small spot that the doctor found was sent for biopsy and wouldn't you know, melanoma (great) I will be having Mohs surgery this coming up Monday. Now I get to see my Derm every 3 months.

    When I was originally diagonosed with BC, there was a lot going on in my life. Mom was having a really rough time, my grandfather passed away earlier in the year, my uncle passed away about a week after I was diagnosed, I had to put my dog down of 15 years. Then having surgery and radiation, maybe my nerves were just shot anyway. About a month after radiation I started Tamoxifen and a month later I was having ridiculous SE's. Heart palpitation, high blood pressure, I seriously thought I was having a heart attack. Oh, and I was getting the weirdest dizzy spells, it was almost like week in the knees and I could hardly hold a pen, I felt very weak. The Neurologist seems to think it was extreme fatigue. I have had two head and neck MRI's with and without contrast that came back abnormal but again the Neurologist just wants me to do this every six months to make sure nothing changes, he doesn't seem too concerned. He stated the small spot they see, could be something that I've always had.

    Before my diagnoses, I was never sick or had to go to the doctor, other than annual OBGYN and Mammo and maybe the occasional sinus infection. Now it seem like I have to go all the time and weird random things happen. When I had a couple spots removed at the dermatologist, I ended up getting what looked like a cold sore around the area, guessing this is how my body deals with stress now. Towards the end of summer this year, my belly button got infected, who does that happen too? Me, that's who. I have been having issues with my tailbone too, just weird random things.

    Recently I was also referred to a specialist to rule out Glaucoma. Luckily I did test negative at this time but I am still at risk, as the pressure is very high, so there's another specialist I get to see every year.

    This is all just so crazy to me and seems very coincidental that it all started after radiation and Tamoxifen. I'm sure there other things I'm forgetting to mention.

    I wish everyone well and hope for a better year.

  • Frisky
    Frisky Member Posts: 1,686

    DeeBB, so sorry to hear about your woes...I had a hard time on tamoxifen and I feel as if it permanently and negatively affected me, although i was on it for only a few months.

    As far as the cold sore spots, take this suggestion for what it’s worth, but I found the application of iodine to permanently affect the complete healing of the skin.

    Good luck with your treatment.

  • rubyredslippers
    rubyredslippers Member Posts: 94

    Off topic - but I see this so often I have to ask - why do you women in the USA have "annual gyn" check. As a feminist I think this is a paternal medical system rort / control of womens bodies. Just my opinion. Where I am in the world we go if we have concerns, or to follow up prior issues. Why do these doctors tell women that their bodies need constant monitoring and touching by doctors lest something is amiss? Are men getting their reproductive parts checked each year?

  • jrnj
    jrnj Member Posts: 408

    They test for cervical cancer and pre cancerous cells that can turn into cancer. All with no symptoms. I had hpv 30 years ago. They removed layer of cervix and it never returned. I also have fibroids with no symptoms so I get vaginal ultrasound to check for ovarian cancer with is usually no symptoms til too late. We also have to go to get mammogram prescription

    Funny story. I told my dr I was having hot flashes. My young new dr said do you want hormone replacement? I said NO. Do they not think this is risky? Would she have even tested my hormones which turned out to be normal to high. A month later dx. Another new dr I have to find.

  • macb04
    macb04 Member Posts: 756

    DeeBB. I think tamoxifen is a horrific thing that made me into an irrational crazy person for 9 awful months. My suicidal thoughts were constant, along with new onset incontinence, mood swings and volcanic rages. The insomnia and lack of decent sleep for months . My sex drive died and I had painful ovarian cysts. The final straw was frightening my 7 year old daughter, screaming over something inconsequential, making her cry.

    It took around 2 years for my brain to finally return to normal. Now I rarely cry, and am calm and collected. I never want to feel just one step sway from madness again. No more tamoxifen, ever, surely one of the most evil substances on earth.

    My friend Mary, who died just 2 years after diagnosis, was on tamoxifen. Stage 2a to Stage 4 in just 2 years. Did her no good and ruined what was left of her life, with tons of side effects. So not worth it.

  • marijen
    marijen Member Posts: 2,181

    That’s appalling that a doctor would recommend hormone treatment for a cancer patient. Good grief, not funny.

  • Vicky710
    Vicky710 Member Posts: 5

    I feel real empathy for youm Macb04. I have had the joy (not al all) of everything you have experienced. I had to have very aggressive chemo. My second time with breast cancer. First was 1995 and I went through having a lumpectomy. It was a Negative carcinoma,

    Very large tumor and came on like overnight. I also had a torn rotator muscle at the time and had to delay the surgery for that.

    I had Methotrexate and Cytoxan. Went into overnight menopause at age 45. then a 30 day round of radiation. I had no dreams at night for years. The worse part was not just the hot flashes but the lack of lombido. To this day I still have no interest at all. When I told my Onc and My family doctor. They didn't have a clue of how that could happen or what to do for it.

    Now the second go around 24 years later in 2015. I developed a aggressive triple negative ductal carcinoma. It was too large to risk a mastectomy at the time. I received a heavy infusion of Adriamycin( the Red Devil)and cytoxan. Followed up with heavy dosage of Taxol.

    This started in October by the end of January I was in the hospital no longer able to tolerate the drugs.

    I won;t go into all the symptoms because they are the same as yours.

    Now 4 years later I am not showing any cancer cells in my scans. But I do have every symptom that you are having. The pain and sleepless nights are terrible. The doctors are not sure what to do about it except take Naproxen for the muscle and joint pain.

    All and all ... I feel blessed to be alive and I would do it again. Medicine is not an exact science. I am hopeful someday the pharmaceutical company's would do more aggressive research on how us women react to different drugs. Keep on moving and doing the best you can.

  • macb04
    macb04 Member Posts: 756

    Vicky, thanks so much for writing back to me. I am sorry you are still having such miserable sleep and joint pain. Lack of sleep just about destroyed my sanity ( what was left of it) when I was on that terrible tamoxifen. I empathize with anyone suffering from insomnia.

    I didn't stay on tamoxifen, for a number of reasons, insomnia, was high up on the list. I also never felt safe, and especially hated the urge incontinence that wreaked a pair of shoes when the urine ran down my leg, leading to complete mortification.

    I luckily gave up on the Western doctors and started on science based Naturopathic care. I found a wonderful Oncology specialist Naturopath who had me start on Melatonin 20 mg/capsule that I take 20 minutes before bedtime. This helps me to fall sleep. This is backed up by study data.

    Then she also had me start on Low Dose Naltrexone ( LDN) 4mg, which I take at bedtime. This helps with pain, has immune boosting, anticancer benefits, AND helps me stay asleep all night.

    She had me also start on Thorne Meriva Curcumin, which keeps my arthritis pain at bay.It even lowers my CRP, inflammation markers AND got rid of my Rosacea. I can't imagine the suffering I would have without the Curcumin. Actually, I know exactly how bad it would be. Sometimes in the past, on the worst "treatment " times, when I was out of work, I couldn't afford to buy the Curcumin. Now THAT was BAD. So bad, I was terrified cancer had come back, because I was back in pain. I finally realized I had stopped the Thorne Curcumin, when I ran out, and almost exactly 2 wks later was when my pain returned. I broke open my Retirement CD, and took the hit on taxes, just so I could afford to buy the Curcumin again. I will never be without Thorne Curcumin again.I just get so demoralized by constant, nagging pain. I am so grateful I met my Naturopath.


  • santabarbarian
    santabarbarian Member Posts: 2,311

    Could not agree more about curcumin!! My "pre arthritis" in one knee and one hip has VANISHED.

  • MsPrecious
    MsPrecious Member Posts: 16

    Please does anyone have or had a vertical dark streak on big toenail that started during chemotherapy but still persists after chemo? I have a dark vertical streak on my big toe nail that has refused to disappear. It's 5 months + after chemo and the dark line is still there. There's no pain or anything of such. I'll be having a biopsy soon.

  • minustwo
    minustwo Member Posts: 13,389

    Ms - when you get a minute, please go to My Profile and post your diagnosis & treatment. It's easier to respond if we know the whole story - such as what chemo did you have.

    The toe nails can detach during chemo. Once detached, you can get a fungus growth under them. Even if you don't have any detachment, once toenails are injured it take over year for a big toenail to grow out. I forget the number of months, but it's unbelievably long. Much slower than finger nails.

  • MsPrecious
    MsPrecious Member Posts: 16

    I have updated my profile. My toe nails only had a slight discoloration during chemo but this vertical line has persisted and I am a little worried.

  • minustwo
    minustwo Member Posts: 13,389

    You can certainly consult a podiatrist. I did, That's how I found out big toenails take 6 months to a year to grow out from the cuticle. It's so slow sometimes it's hard to see if the line is moving at all.

    Or you can consult a dermatologist if you already have one. Strangely they do hair, skin & nails.

  • macb04
    macb04 Member Posts: 756

    Mrs Precious. Chemo is known for causing all sorts of bizarre nail damages. Most are benign but persistent.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763763/


  • MsPrecious
    MsPrecious Member Posts: 16

    Thank you so much. I am at peace now.

  • lillyishere
    lillyishere Member Posts: 789

    Ladies, have you found any supplement that may work for joint pain from letrozole? I am on the 3rd month of taking letrozole and my joint pains and stiffness are getting worst.


  • Frisky
    Frisky Member Posts: 1,686

    hi Lilly,

    What has worked and continues to work for me is magnesium citrate 400mg in the morning and another 400mg with calcium at night if the aches and pains persist.

  • lillyishere
    lillyishere Member Posts: 789

    Thank you Frisky.

  • marijen
    marijen Member Posts: 2,181

    bum

  • macb04
    macb04 Member Posts: 756

    I am really having much more achiness in the past month than I had been having. Kind of weird. No changes in anything I can think of.