Hello all! I'm reading posts and starting to comment so I thought I'd introduce myself.
My name is Leo, my wife Susie was diagnosed with TNBC in Sept 18. Chemo, FEC-T and double mastectomy, all quiet until Dec 20 and then stage 4 mets to lung and lymph nodes. As only palliative care was offered, we read very widely (we are still reading and won't ever stop) and have had inter tumorial immunotherapy and cryo ablation with Dr Jason R Williams in Mexico. We are taking lots of supplements, COC drugs (no Doxy as it's an antibiotic) and RSO. High dose IV vitamin C twice weekly and mistletoe every other day.
We are a family of 4, two beautiful children aged 2 and 6 so we are not letting Mommy go anywhere, giving it everything available in the world and will continue to do so.
That's me and us, hello all!
Happy to hear positive stories, help and advice. I'm also happy to share the same.
XX ♥️ 😘
Leo
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Winner123
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Hi Leo and welcome. Keep positive and smiling. Enjoy life to the full with your children and wife. There will be ups and downs but you will all find living with MBC will become easier as the days go on.I also have mets to my bones, lungs and lymph nodes. I was diagnosed in 2019 after being given the all clear six months earlier from breast cancer in 2013.
Keep reading our posts. It makes life so much easier for us.
Best wishes
Cheryl
Hi Leo -
I'm so very sorry for what you all are going through, my gosh!
I just want to share that my sister was dx'd with metastatic TNBC 6.5 years ago and she's currently NED. Her original mets were to the bone (sternum), which were radiated/chemo-ed, and then twice she had mets to her lung. Both times "they" removed the affected wedge of lung vs. like taking a sample (not as bad as it sounds...her lung function is fine, e.g. she ran a marathon after the second surgery).
She's taken no treatment since the post-dx rads/chemo, but she does run (very slowly) about an hour/day, several days a week, plus she does other activities that engage her large muscles. She has done this exercise not specifically to fight cancer, but there are some studies with compelling evidence re: the link. Here's an article: the-scientist.com/features/...
It sounds like you all are being very proactive, e.g. the COC, so I just thought I'd add some info re: exercise as another possibility...might help, won't hurt, right?
My very best to you and your family....
Lynn
Hi Leo and Susie, and welcome.Sounds like you are a very positive family which I think is a very important attribute. The fact you have a young family will help Susie to keep fighting. How lovely she has such good support from you as well.
I was diagnosed with mbc just over 2 years ago to spine, lung and pleura. I am still going strong, taking Ibrance and Letrozole. My 14 year old is my incentive; I want to see him become an adult.
Wishing you and your family many many good years ahead
Clare
Hi Leo welcome I am sure Susie is very lucky to have you supporting her. Having support from loved ones is so critical
You may have come across it already but Jane McLelland is worth checking out ~ how to starve cancer (sorry it won’t let me paste the link) she has a book and really good online course. I’ve been diagnosed with ER+ HERC2- breast cancer with mets to lymph nodes, lungs and bones. Since diagnosis along with COC protocol (but I don’t take the doxycycline either as I am focused on gut health) I’ve reduced my tumour markers by over 80% in 7 months with diet changes and all advice
I also listened to a talk yesterday where Sophie Sabbage talked which was all about how to cope with the emotional impact and fear associated with a cancer diagnosis and how that’s important as well ~ I’ve just ordered her book Cancer Whisperer as she was so honest and had great tips.
Hey. Thanks for your message. Yes, I read Jane's book. Susie is reading Cancer whisperer. There are quite a few books that attack cancer as a metabolic disease, I forget the names now but I've read three on that subject I think. Nasha Winters is also good, a strong advocate of Keto for obvious reasons. The cancer survivors Bible by Johnathan Chamberlain is also a good one, I sent that to everyone in our family. Thanks for your reply, keep me posted on your progress! X
Hello LeoWelcome to the forum, you sound like a lovely supportive family. I too was diagnosed Dec2020 with mets to pleura, nodes, spine and rib after breast cancer x 2 since 2012. I did have 5 year clear 2012 to 2018 with Tamoxifen but then it returned , another op and letrozole which didn’t work.
Now on Ibrance , fulvestrant and denosumab, feel good, had 2nd scan results this week, no progressions. Totally changed my diet to Organic and cooking from scratch and exercising as much as the meds allow, and enjoying all this it’s given me a new hobbies .I shop at my local farm. My daughter is a dietician and even though she lives South of UK, I am in North , she helps with advice. She’s now product development for the largest high street Heath Foods / Supplements chain in UK after working for NHS and we are on this journey together too.
So glad you see this as a family journey and can be supportive to your wife.
Hi Debra. Thank you for your message. We have been on a similar journey (although we don't have your daughter's expert advice!). We only buy organic, almost 100% at home, bit difficult when we are on holiday (which is as much as possible ATM!) It's very difficult to find things Susie wants/ fancies, and can keep her weight up. She's currently at about 57kgs which is a little low for her 5'10" but we are trying. It's causing a little friction as I just want her to eat all the time as the food is low carb so she needs little often. She gets pissed off with me keto trying to get her to eat. We will find our way. Any tips, tricks, secrets would be greatly appreciated. I'm not a good cook im afraid, I'm trying to learn but I'm adding stuff did to the anti cancer properties rather than the taste! (Onion, rosemary, mushroom, spinach ect,).
Just want to say welcome here. You have found a good place for advice, information and support on this "roller coaster" journey with MBC. It will get easier with time. My thought on the eating problem is lighten up. No use upsetting someone with pressure. It is counter productive. It will probably iron itself out and her appetite will return. Nothing wrong with a little encouragement but that is all. My hat is off to you though with everything you have going on. Two small children and MBC. You sound like a wonderful support.
One thing I think I have noticed here is that juicing everyday seems to be a very good thing for keeping our systems strong. And exercise. Lastly but not least, if you don't agree with what your oncologist is saying, get a second opinion. Don't hesitate. No one oncologist knows everything.
My main sources of info are the Mayo Clinic, John Hopkins and my National Cancer group. (I am in Canada) If it is happening, they know about it. Saves lots of time reading up on info.
I was diagnosed in 2013 and I am 80 yrs. old.
Hope some of this helps. Wishing you well and looking forward to more posts from you or Susie.
Thank you June. I will try to ease up, it's just so difficult seeing someone you love get thin and obviously refuse food when hungry for fear of cancer growing. We will get there, one way or another. I'll now go and look at Mayo, John Hopkins and National Cancer Group. I try not to listen to the oncologist at all in the UK. They only have chemo and radiation to offer and I can't read good things about either. Maybe low dose metronomic but that's not offered in the UK, hence they have nothing to offer apart from scans and blood tests.
Thank you again for your response, I respect your opinion and age and experience (without being patronising which I promise I'm not!)
Thanks. I hoped I didn't sound to preachy. I get it about watching someone you love failing. I hope you will have a good outcome and always get a second opinion when needed. All the best,
Hi Leo! Welcome to the group. I was diagnosed de novo (meaning no previous cancer diagnosis prior to stage IV) in July 2020. This forum has been so helpful to me! Hope you find it to be as well.
Love your positive attitude. I think it is REALLY important when LIVING with MBC! So glad your wife has you to support her through this.
Dear Leo and Susie, I am very touched by your story, being a mom of 3 myself, a wife, a woman and second time dealing with Breast cancer. Mine is TPBC, so I am not familiar with TNBC treatments. I do, however, have a very good friend who's been living with TNBC for 16 years! However, it is different for everyone. Having mets so soon after chemo is strange. What I would like to beg you not to do is looking for a hope in Mexico. Please. I don't know where you are from, but I can assure you that developed countries offer the most advanced medications. Doctors do not prey on people's misery.I am wishing you and your family, with all my heart, that you will find the right treatment for mommy Susie. If there is one, then the US, Canada, UK and other developed countries are your best chance. Meanwhile, if I can give one piece of advice, is eat well to keep the liver healthy so you can tolerate any treatment that comes your way.
Hey. Dr Jason R Williams runs the Williams Cancer institute in the USA. A lot of US doctors operate out of Mexico as the hospital bills are cheaper and the drugs are cheaper, that's the only reason. Do have a read of Dr Williams book, the immunotherapy revolution, it's fascinating. We have our current treatment with him, should we need more, onwards and upwards! Thank you for your kind words, good luck with your journey. X ♥️
Hello Leo and Susie ! We are here to support you and in my case with MBC, I'm on iBrance and Fulverstrant (Faslodex) my diagnosis is ER/PR+ Her2-. I'm also on the CoC protocol and my PetScan after 6 months of being diagnsed with MBC (which was 11/2020) was just a few days ago with marked improvement ! Stay the course and keep in mind that mind over matter is a huge boost. That and a strong faith in your healing. Don't rely on just Onc's. Your wife knows her body well. Jane McClelland's books are fabulous as well. A bit technical, but easy to follow. Blessings !!!
Hey ,back in 2006, I did a right breast mastectomy. It was stage 4 , since I had mets in my nodes and lungs. I look first line chemo drugs, adriamycin and cyclophosphamide, also had six weeks of radiation to the primary site. since I was PR+, I took another 5 years of tamoxifen and 5 years of femara. I was cancer free for 12 years!!! I have had a reoccurence since 2018 which I'm dealing with. There are options for your wife. My children are grown up, i have a beautiful granddaughter. Keep the faith, it grows! Stay positive . I wish you wife the very best.
Hey. I'm sorry you've been through all that but it's really reassuring to read, our oncologist gave Susie 12 months with chemo! Really means a lot you took the time to respond. Thank you so much, made my day. XX ♥️
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Just starting ibrance 
Just want to run away sometimes
Just a thought
