Hi! I'm new and excited to meet others and learn about your journey

[Sueforshare]

Good afternoon. I'm new to the group. I already posted an item, but thought I should introduce myself.

I was diagnosed with Stage 1 breast cancer in 2010. Had a mastectomy. Went on tamoxifen for 2 years, then quit because it made me feel miserable. No chemo.

In 2022, I was once again diagnosed with breast cancer, but this time metastatic. What a shock! It spread to my lymph nodes and lungs. Only intervention is that I am currently taking letrozole, and it is holding cancer at bay. Also did lots of research on alternative treatments, and opted for the COC protocol. Taking metformin and mebendazole now in addition to the letrozole. Also taking a host of other supplements that are supposed to help fight cancer pathways. Changed my diet, in the direction of Keto, but not quite there. Eating healthy, and low-carb. Exercising 5 days a week.

I sincerely hope that I have knowledge and/or experience that can help you, and I hope too that I can learn from you all.

Blessings!

Sue

[Elle713]

welcome Sue

It is always difficult and emotional to receive that second diagnosis of mbc. Sounds like you have a great outlook and taking good care.

Please share what vitamins or supplements you ate taking in addition to your standard treatment.

And Best Wishes to you.

[Sueforshare]

Multivitamin, Vit C & D, NAC, selenium. And, of course, I have ok'd this with my oncology team. Don't take any advice from me without consulting your cancer care team.

Any other suggested supplements that you are taking for cancer?

[mariootsi]

Sue, so sorry you are here but you are now part of a wonderful group of women who share and care every day..

[Sueforshare in reply to mariootsi]

Thank you for the welcome and for your support.

[love2golfwell]

I am sorry you are on this journey, but this is a great site for information, advice and support. You sound like you have a positive attitude and are doing all of the right things for your health. I'm glad the protocol you are on is working for you. My doc is not a big fan of supplements or alternative protocols, however, I take a multivitamin, Raw Calcium/Vitamin D and have a wonderful protein based smoothie every morning and keep active. So far, so good. Hope you continue to do well. Sending you hugs and prayers.

[Sueforshare in reply to love2golfwell]

Thank you for the warm welcome. Prayers and hugs right back at you. I too love green smoothies with protein and nuts for my morning start.

[ba5083]

I too have used COC (in the US) but have recently switched to another Metabolic/integrative Oncologist. I have Lobular ER/PR+ HER2-. My 1st Oncologist wanted nothing to do with or was the least bit interested in anything other than the flow chart standard of care. My new Oncologist is very open as long as there is not any drug interactions with Verzenio and Exemestane (current meds I'm taking). It is nice to be able to speak openly and transparently with my new Onc that works for a NIC institution. Along with the COC SOC I also take about 15 additional supplements.

My husband is now reading a lot about gut health and how it affects development, progression and treatments. He sent me this podcast today that I will post in an new thread as well. Haven't listened to the entire show yet but what I have listen to it is fascinating. podcasts.apple.com/us/podca...

[Sueforshare in reply to ba5083]

I do a lot of research. I will listen to this podcast soon. I believe that gut health affects cancer. Working to keep mine as healthy as I can. Can you please tell me what an NIC institution is. Are you still taking the COC meds?

[ba5083 in reply to Sueforshare]

I'm sorry my Onc works for a NCI (typo) NCI=National Cancer Institution. From my understanding there are 72 NCI in the US. From what I have seen NCIs are typically tied to a medical/research university and have a lot of trials. The only reason I bring it up is to illustrate that in some cases ONCs are more receptive to the metabolic side of treatment. Not one size or the typical flow chart fits all.

As for COC - I am taking

Metformin

Doxycyclin (3 weeks on 1 week off) - I struggle with this a little because of the toll antibiotics can take on gut health but there is research that it aids in killing stem cells

Mebendazole

Atorvastatin (Generic Lipitor)

Vitamin D

Melatonin

I do take several other supplement as well such as zinc, Claritin, black seed oil, akkermansia, turkey tail, lions mane and a couple others. I also try eat a low glycemic diet. My new metabolic Onc has kept the same scripts as COC but a little different on when to take Doxy and Medbendazole.

Hope that helps

[Sueforshare in reply to ba5083]

That's very helpful - thank you.

[NPmary]

Thanks for sharing your story. Sounds like you are coping well a and doing all that is right for you.That's great. Wishing you the best, glad you found us. ❤️

[Sueforshare in reply to NPmary]

Thank you so much for your warm welcome. Wishing the best for you too.

[Liessie2014]

hi , Welcome to the group , i too have metastatic breast cancer in lymph nodes and lungs I have been on Letrozole and Ibrance for 3 and a half years , I am doing really well , I take probiotic drink every morning , it stops me feeling sick , and I take vitamin D and fish oil capsules every day , I also take an antihistamine every day for my watery eyes I don’t do much exercise, and I eat ok , not as good as I should lol,

I do like my treats lol, fish and chips , ice cream and a few beers ,a must lol , I try to be positive but I do have down days , I always say to myself , no two days are the same , tomorrow I will feel different , It normally works lol , we are all here for you , it is a great group of women and some men , I have had lots of support over the years , I don’t know what I would do without this group of of fantastic strong women , xxx ,

[Sueforshare in reply to Liessie2014]

Thank you so much for that kind welcome! I wish you the very best on your cancer journey. I am so glad to hear that you are doing very well. That's encouraging to me. We are all doing the best we can to take care of ourselves, and we are all walking a very personal journey. My blessings to you.

[Liessie2014 in reply to Sueforshare]

Thankyou Sueforshare ❤️

[nonna70]

Hello, I two am a new member; personally I thought chronic kidney disease was enough. However I was dx with MBC in Dec. 2023. My humerus bone just below my shoulder was so bad it needed immediate surgery before it broke. Since I had had a hip fracture already, I agreed. I take Letrozole and Xgeva. How do you tell a random ache or pain from something more serious. I thought the arm was arthritis and had been fooling with it for 6 months. Thanks.

[Sueforshare in reply to nonna70]

Nonna, as new members I hope we can both share and learn from others who are going through cancer as we are. I can truly understand how we don't know if our aches and pains are serious or not. I know of someone who was diagnosed by 3 different docs within a period of 8 months as having sciatica because of leg pain, only to find out after an ultrasound that he has two blood clots in that leg! Go figure. It's a true blessing that you received the correct diagnosis and can now receive treatment.

I hope you are healing well from surgery. Best wishes to you!

[nonna70]

My surgery is just about healed, thanks.