stop the madness

Thank you triciaot! I didn't know that about tamoxifen. I'm post menopausal, have a uterus w/out PCOS or other problems, invasive HR+ HER2-. Also have spinal osteoporosis. I'm working hard to wean off est/progest/test cream. Again, thank you for the info. Very helpful.

@krisrwalters I included this in my post:

'There are certainly instances where overmedication may happen, or truly intolerable side effects,'

I just want to provide a balancing viewpoint because there are so many posts online about side effects and I have friends who are so scared that they won't try them. Apologies for stating the concern so strongly.

It sound truly scary to be dependent on hormones , for comfort, that are also potentially feeding a cancer. I hope you can get off gently but quickly. You are in the opposite direction of AI's- more estrogen rather than less. I hope there is a pain mgmt. doc or alternative doc or some doc who can help.

I have systemic lupus, high scleroderma tests, atrial fibrillation, COPD, spinal cord damage, 7 spinal fractures and am extremely sensitive to meds, foods and the environment. Recently I was told it was probably eosinophilic esophagitis. My daughter has shown a lot of the signs of EDS: very loose joins, POTS/fainting, along with type 1 diabetes and epilepsy. It's not like we are the health privileged here.

So many people avoid AI's. I think it is worth it to try. Exercise helps. But I get- and I included in my post- that for some it is simply intolerable to eliminate detectable estrogen. Oncotype may also show low risk.

Because of my lupus, my doc did not want me to do radiation. That is one reason I had two mastectomies.

As for cancer spreading with parenchyma as a factor, that is very interesting. My docs told me that we all have cancer cells floating around, and that with cancer itself there are some cells that "want to go somewhere." It was explained to me that that is why my lymphovascular invasion was a concern, as would positive nodes. It's not like the cells from my LVI were going to crawl upward: it's that they demonstrated the ability to move and implant and not all cancer cells do. That was back in 2015 so it is good to read some theories about other factors.

Hi
I had to go off Raloxifene to start Prolia for declining bone mass density. Prolia worked at first but then I had a rebound and lost everything I had gained and more. I had stopped Reclast after a full course of infusions. I went from osteopenia to osteoporosis. I was 58 years old. I moved from Massachusetts to Florida, and began exercising outside. Tennis lessons, walking, pickleball, water aerobics. (I’m no natural athlete!!) my osteoporosis began to change back to osteopenia and I continue to build bone mass. Pretty surprising.
Despite my double mastectomy last year, my bone mass continues to improve.

Thank you for your reply. This is my concern-that raloxifene will not be effective or not effective enough. On top of the switch from Prolia, I did procrastinate for about a month before starting this daily oral medication because I wanted to address the issue with supplements, diet and exercise. This was before I was reading Mayo Connect.

I see my endocrinologist early April. Not officially eligible for a scan until September but I believe it will be covered if she orders it to be done sooner. Will update when I know more.

Thanks again,
Cindy

I posted this 4 years ago. All my checkups have been negative so far. I lost 70 pounds and started a healthy journy of walking every day. I go in for another mammo next month and hopefully will still be clear. Stopping the drugs was the best thing I ever did for myself. I still cant use my fingers and my osteoarthritis is still quite bad. I think that drugs are not always the answer. I dont take anything stronger than a tylenol once in a blue moon, and I am living my best life. But you do you. I wont let the disease scare me anymore. Every journey is different, but YOU be in charge!

That surgeon wouldn't have been in MY life anymore! Bless your heart and good for you. Keep on keeping on!

Hi. I commend for the hard work of thinking through all the treatments offered, looking for more information and questioning. As to negotiations with oncologists, I can’t tell you what to do but I can tell you some of my experience. You are right. It is your body and your life. At the age of 72 I was diagnosed in December 2021 with MBC to the bones. I was in great health and on no medications. I have been eating plant based for 8 years. I was reluctant to put the FDA approved poisons in my body. I did a lot of research including the lengthy discussions on this forum. Over the course of 2022 I refused 3 medications and 1 procedure. Each time I had to sign a document. Looking back I feel I should have refused another medication that I tried. I continue my research and choose other non toxic substances. In 2023 I learned that cancer is a metabolic disease which calls for a completely different approach than the conventional standard of care offered to us. It’s unfortunate that we are not offered anything more. There are certified oncolgy naturopathic medical doctors and others who can help us. But you have to find them on your own which isn’t so hard because we have the internet. It is very time consuming. Cancer research has become a very worthwhile part time job for me. Each person has to make her own decisions. I hope this helps a bit.

pbnew i must say i admire your bravery and diligence in finding what makes the best sense. I realize that i really must find the strength to do the research around certified complimentary oncologists. I'm already quite ill and tired going into this cancer journey. Also, I've spent nearly all of my retirement trying to get better. Traditional medicine has trashed my body. I'm not trying to be ungrateful; I'm traditionally trained and know there's a place for it and there are aspects of it that have helped me. However, why would I continue down that road solely now? Thank you for your thoughts and comments, very much. They were very helpful. Wishing you all the best!
Kristie

Thank you. You might want to read or watch interviews with Jane McLelland. Also Radical Remission. A good source of information is the Ralph Moss report, website and YouTube channel

Thank you! I will do just that. I hope you have a beautiful day..