Reintroduction

[HOPE1413]

Hi. I joined this group about a year ago. I was not very active with posting. I had a lot of things happen in a short amount of time and was having trouble dealing with everything. Initial diagnosis of TNBC in June 2020, diagnosis of autoimmune disease (NMO) in Oct 2020, diagnosis of liver mets in Jan 2021. I feel ready to share my journey and help any of you if I can. I have great support at home but it's always nice to talk with someone who knows EXACTLY what you're going through. I hope everyone is having a great day and I look forward to communicating with you.

[Teddielottie]

Welcome back Mandi ! How are you doing ? x 🌻

[HOPE1413 in reply to Teddielottie]

I'm doing really good right now. I'm taking Xeloda and tolerating it very well, just started cycle 2. Also just started on Xgeva for bone mets, no issues with that so far.

[Georgiamjb]

Hello! Our journey is similar. I was diagnosed with autoimmune disease MCTD in December 2019 and a second occurrence of ILC breast cancer in January 2020, then metastatic ILC in July 2020. It’s been a journey but I’m stable and also have wonderful support. I wish you the best!

[HOPE1413 in reply to Georgiamjb]

Yes, we do have similar journeys. Having the autoimmune disease on top of the cancer was really hard to wrap my head around. I'm glad you have good support and wish you the best also.

[TammyCross in reply to HOPE1413]

I had an unusual auto-immune disease -- but not as unusual disease as yours -- that can cause strokes and blindness. Had to be treated with high dose of steroids for two years. As soon as I got off (mine went away, so I guess I was lucky?) steroids, mbc. I will always wonder if there was a connection between cancer spreading so far so fast and the suppression of my immune system with steroids.

You sound game and handling it well. It is a lot.

[Hidden]

Welcome. Each of us has a different way of using this message board. I encourage folks to be as active or observant from a distance as suits their personality.

I’m glad you find the board helpful. Be well

[SusieIM]

Welcome back! Glad to hear you are doing well, look forward to hearing from you (smile).

[Sunnydrinking]

Hi

Welcome back!

I fully understand re. taking a break from posting & our busy lives and different things we need to focus on.

I have found this forum so helpful & we are very supportive of each other.

Nobody really knows how living with MBC feels unless you’ve got it!

My widespread mets to lung and bones are stable but my liver mets are proving troublesome… During my last 3 treatment lines of an Oral SERD (clinical trial), Xeloda & taxol my liver mets have still progressed!

I’m now on weekly IV Epirubicin and just hope it’s working its magic 🤞 I’ve had 4 weekly infusions so far and I’m tolerating it really well.

Best wishes

Jo xx

[HOPE1413 in reply to Sunnydrinking]

My liver mets are also giving me trouble. I will be on a treatment that works for a bit then quits working. My oncologist started me on Xeloda hoping pills will work better then IV treatments. Will find out in a few weeks when I have scans.

[USIrishcolleen]

Hello HOPE1413,

I also had an auto immune disease, Guillan-Barre’ Syndrome, diagnosed in Oct. 2018. Thirteen months later after spending 7 1/2 months in the hospital and 5 1.2 months in a nursing home, I was diagnosed with ER+/PR+ HER- invasive ductal cancer, stage 2.

I wonder if there is a connection with immune disorders snd cancer, or if those with these conditions are just more susceptible to getting cancer, because of weak immune systems?

Best,

Colleen

[HOPE1413 in reply to USIrishcolleen]

There are some similarities with our auto immune diseases. I'm so sorry you had to spend that much time in a hospital, that's always a big fear of mine. Who knows if there is a connection with cancer. They think the NMO(Neuromyelitis Optica) was "triggered" by Keytruda that I was on along with my initial chemo. It was to be a "rare" side effect, less than 1%. So when someone tells me I probably won't experience certain side effects I don't have much confidence in that. I've already be the "rarity". 😆 But I keep pushing forward

[TammyCross in reply to USIrishcolleen]

Colleen, I speculated about that above -- but in a different way. I thought the anti-inflammatory treatment for auto-immune disease depressed immune response that might have kept cancer in check. (An oncology nurse practitioner suggested that to me, but the oncologist said no. She says no to almost everything other docs say.)

[stardust1965]

Welcome back to this community. Gosh, you really have had a lot to deal with. It’s such a rollercoaster journey but this group is here for you. Wishing you well. Vicki

[mariootsi]

Glad you are back Mandi. You have certainly had many challenges on this damn Rollercoaster!Keep posting!

Love,

Marianne

[Hidden]

Welcome back. Always lovely to have another member who can support and advise. I look forward to your postsClare

[HOPE1413]

This may sound horrible but I hope that I get to live with cancer for a long time. I try not to think like that but it's hard, as you know. I'm 44yrs old and have an 8yr old son, I have to fight and keep fighting. When I struggle I am able to lean on my husband, family/friends but it's hard for them to understand. Now I can go to this group and vent to all of the warriors on here. So thankful!

[debbiedo2063]

Welcome back. It’s so good to share experiences as you say from people who really understand the issues and how we feel. Look forward to seeing your posts. Take care

Debra xxx😍

[Missmaddie615]

Welcome! Sorry for the late response, I was enjoying an extended Labor Day weekend! So sorry that you have been dealing with so much, but glad to hear that you’re doing well now! Somewhat similar experience- I was also diagnosed MBC in June 2020. I also have liver involvement along with some lymph nodes and my sternum. I am on Keytruda now along with Abraxane. My oncologist told me that being on Keytruda, my body can develop any medical condition that ends in “itis”.....

This lovely group of ladies have helped me keep my sanity! Looking forward to hearing from you! Wishing you the Best success with your current treatment!