New Member

[Shafight]

Hi to all my fellow Warriors. I’m 71 and I’ve been treated for Stage 4 Metastatic BC for 11 months. 3 years before that I had stage 2B BC. I took Femara for 3 years with lots of side effects. Then I suffered horrible back pain. I walked with a cane. Couldn’t sleep. Since being diagnosed with Mets to my bones, I’ve been on Fulvesant, xgeva and Ibrance. I have few side effects. I now have no pain and no fatigue. I’d love to hear from others with BC Mets to the bones! Hang in there everyone !

[Iwasborntodothis]

Welcome to this amazing group of inspirational women - this group has helped keep me sane over the last 2 plus years. I have had great success with reduction of bone mets through one 5 round course of radiation on my hip, Xgeva, and Xeloda. Pain free right now and very happy. I am sure you get lots of responses.Allison

[Shafight in reply to Iwasborntodothis]

I’m so happy to hear a positive outcome. Great that you have no pain

[Teddielottie]

Hello and welcome on here ! Good to see you are doing well on Ibrance and now have no pain and tolerable side effects. I have been on this protocol for bone mets for over four years now and I hope you get a good long run on it too . x 🤞

[Shafight in reply to Teddielottie]

OMG. So happy to hear 4 years. This brightened my day

[Hidden]

Welcome. Feel free to ask questions, just read along, vent, or share photos of nice settings to lift your spirits.

I’ve been on Ibrance and Anastrozole protocol since 8/18.

I’m pleased you’ve found pain relief. I find exercise helps my body and mind, whether it’s walking, cycling or swimming. With bone Mets, I’m careful but still live my life.

I’ve given up alpine skiing for bone safety. I miss it a little but don’t miss all the bother putting on ski gear. At 65, I’m ok with that.

[Bettybuckets in reply to Hidden]

Wow! Love how long you’ve been on Ibrance gives us all hope! I just spent my first night in my new house in Pinehills in Plymouth. If you ever go past up to Boston- stop by and have tea? I am assuming you are on the vineyard?

[Hidden in reply to Bettybuckets]

How do you like the Pinehills? We’ve considered it but we are not golfers which I know is a big draw for people.

It’s a nice development where you can get more for your money than metro Boston.

I don’t live on the Vineyard. It happens to be a place I love. We vacationed there for a week last summer. We plan to return again in late June

[Bettybuckets in reply to Hidden]

HI MV- 6 months ago we moved from a small island similar to Martha’s Vineyard off of Auckland NZ…. It has 31 vineyards! I like the Pinehills a lot and we don’t golf at all. I like the trails that are all over…. And shoveled out the day after the storm. I also like Ebikes as the Pinehills is part of the 100 miles of dirt roads that Plymouth has. I have been on Ibrance since 8/20… waiting to get results back from scans in Boston yesterday. What will be will be.

[Aquadog]

Welcome to this wonderful, supportive group. I'm glad to hear you're doing well on fulvestrant and Ibrance. I was a Stage 3b cancer patient in 2008 (lumpectomy, chemo, radiation) then cancer-free until 2016 when I was diagnosed metastatic with mets to the bones. I've been on Ibrance(100mg)/letrozole/Xgeva since February 2016 with no progression.

Feel free to post whatever's going on - how you're feeling, what you're thinking. We're here to listen.

Sending hugs,

Susan

[Shafight in reply to Aquadog]

I’d like to know if your bone Mets go away with medication or are just stable????

[Aquadog in reply to Shafight]

Actually, a little of both. The met on my sternum was the largest and caused some damage - it's still there, but not actively cancerous. Small ones on my femur and hip are gone completely.

[Shafight in reply to Aquadog]

That sounds good. My last pet scan said some Mets were shrinking and some increasing. Dr said there was very little increase.

[Nocillo]

I’m glad your medicine is working! I was diagnosed with MBC to the bones in 2015. Took anastrozole and fulvestrant for almost 6 years. Then it moved to my stomach and now I’m on Ibrance and Tomoxifen. I hope your meds work for a good, long time!

[PeabodyTerrace in reply to Nocillo]

Nocillo, I was diagnosed with MBC in my stomach in November, 2021. My original invasive lobular carcinoma from 1995 (which reoccured in the chest wall in 2005) has infiltrated four areas of my stomach. I am being treated with Ibrance and letrozole, and so far my body seems to be tolerating it well. You are the first person in all the online support groups I’ve joined that has had a metastasis in the stomach. Do you have any resources that you could share with me where I can read more about this rare metastasis to the stomach? Thanks for any help you can give me!

[Nocillo in reply to PeabodyTerrace]

Hello! I’m sorry that you are in the same boat. Thank you for reaching out. Unfortunately, I do not have any information. I have not done any research on the topic. When I was first diagnosed with bone mets, I did read up on things, but I felt cancer was taking up too much of my precious time and so I asked questions when I would see the doctor, but otherwise I didn’t spend time researching. I have just switched to a new oncologist because I did feel like my previous oncologist dropped the ball when I was vomiting constantly and losing weight. It was my family physician who recommended an endoscopy after weeks of illness. It was then that they discovered the stomach mets. My new oncologist has explained that lobular cancer does tend to affect the digestive system. Something I had never known before. Now of course I worry about the rest of my digestive system! I have taken Ibrance and Tomoxifen since last spring and I hope it works for years to come. The doc also did say that lobular grows in strands, rather than a typical tumor and that can make it very hard to detect. I’m sorry I can’t be of more help. Maybe I will try to find more information right now because I’m resting from my scans and Zometa infusion yesterday. I would be very interested to know how they found your stomach mets and if you know anything else. Thanks for responding.

[PeabodyTerrace in reply to Nocillo]

Thanks for the quick response! My latest bout with cancer started this past summer. I was having stomach pains and lost 15 pounds without trying. I thought I had a stomach virus of some sort so I went to my primary care physician who noticed that my abdominal area was hard and swollen. After that I had an ultrasound, a CT scan, and endoscopy, all of which suggested cancer in the stomach. From there I went back to Dana-Farber Cancer Institute in Boston. Another CT scan, endoscopy, and PET scan followed and it was determined that my original breast cancer from 1995 had metastasised to my stomach. If I find any info on our shared illness, I will share it with you! Good luck on this journey!

[Nocillo in reply to PeabodyTerrace]

In late summer and fall of 2020 I just didn’t feel like eating as much and lost 17 lbs. without even trying. I thought it was just me, 64, starting to eat less as they say happens when you get older. It wasn’t until the constant vomiting in January and February that I realized something more was going on. In all, I lost 45 lbs., which I was thrilled with, since the weight had crept up over the years. I have now gained back 20 of those lbs., which is frustrating, but I am not disciplined enough nor do I wish to live the rest of my life watching every bite I put in my mouth. I should have been more elated today with yesterday’s results, but I was tired from yesterday and got stuck down the rabbit hole of wondering when and where it will strike again. I’m usually more positive, but today was pretty blah. Thanks for your response! I think there is one more person on here with stomach mets, but I don’t remember her name. 🍀 Good luck and please keep me posted on any of your changes. I’m still so irritated/confused as to why my onc at the time did not act on any of my situation!😡

[PeabodyTerrace in reply to Nocillo]

I understand how difficult it is to stay positive. Be gentle with yourself and allow yourself to recognize your feelings and have a pity party--I have these days too. Life is unfair and the older you get (I am now 71), the more you realize it and try to accent the positive things in your life. I am trying very hard to be upbeat about my latest cancer diagnosis for the sake of my son and daughter because they have been with me through my two prior cancer diagnoses and they lost their father to multiple myeloma when my husband was 36 and they were 5 and 7 years old, respectively. It hasn't been an easy journey, but I do believe that everything happens for a reason, but what that reason is still escapes me! Hang in there. Hopefully, tomorrow will be better.

[8576]

Welcome. I have had bone mets for 10years. now. They are stable but I have had advancement in my lungs. I find out the first of March how they are doing. They have advanced with every scan since the beginning five years ago. I am fortunate to have a slow growing cancer. I am sure I had cancer before diagnosis.

Cheers, June S.

[cancersucks2 in reply to 8576]

When I hear stories like yours it gives me Hope. I also find out in March to see if there are any changes. Stay strong 🙏

[mariootsi]

Welcome and glad your treatment is working!

[Books48]

Hi all, four years ago I was diagnosed with BC (lumpectomy, radiation, tomoxifen) then bone Mets were discovered on my spine and a few other places. So, now, faslodex, zometa (both once a month) and daily Ibrance. Had PET scan this week, read report, which was not definitive (such as foci lit on right femur but could be from exercise or injury and foci lit up on liver and etc), so will see onc on the 22nd, if it was something to worry about she would call. But all in all feel good, have discomfort in back sometimes. But not excruciating!! So glad to be on this site. There are so many of us on this journey!!

[cancersucks2 in reply to Books48]

So glad to hear you don’t have much pain. Nothing but good news for you on the 22. Stay strong 🙏

[cancersucks2]

Hi Shafight, I have a tumour on my spine has not spread. I did have excruciating pain because the tumour broke my back. It was all very sudden. I was diagnosed the beginning of September 2021. I had a sore back in the upper part then it slowly got worse. I am on Letrozole and Ibrance. Some side effects which are getting better except my hands and joints are stiff and painful. Stay strong my fellow warrior

[Shafight in reply to cancersucks2]

So happy you’re now stable. Question: With bone Mets are we supposed to be careful with exercise so bones don’t break? What have you all been told?

[cancersucks2 in reply to Shafight]

I really haven’t got a definitive answer. They say do what you usually do, listen to your body, don’t jump ?? I’m going to ask to see a Physio Therapist who specializes in oncology. I’m afraid to do anything but walk. Then they say be careful you don’t fall ?! I’ll keep you informed when I learn more. You the same. Stay strong

[Discocat in reply to Shafight]

My oncologist was very encouraging for me to keep active, and has said she wants me to exercise…but we discussed options like walking, swimming, yoga and Pilates. It depends on the extent of your mets and their position…and I’d definitely ask your doctor before changing your lifestyle too much.The Pilates instructor that I go to was initially worried about damaging my spine (I’ve got mets all over it), but she’s known me for years before diagnoses and we’ve gradually built up a program that we’re both happy with…not too heavy but still a good stretch that engages the muscles.

Really recommend to get moving ,if you can, as it does help to lift your spirit! I’m having Zometa infusions monthly which are helping to strengthen the effected bones.

[Discocat]

Hello!Welcome to our group !!

I was diagnosed MBC , stage 4, June/July last year….so not long in. Had no previous cancer, so was quite a shock. I also have bone mets…skull, spine, shoulders, breast bone, ribs and hips/pelvis. I am taking Ibrance and Femara (Letrozole) and I also have monthly Zoladex (Goserelin) implants and Zometa infusions. The oncologist also prescribed a calcium supplement called Caltrate.

Glad to hear that your now pain free! That’s great, and not being fatigued too!!

I had rib pain initially that kept me awake as I could not find a comfortable way to sleep…but now also pain free.

Wishing you all the best with treatments and life in general.

Zoe xx

[Shafight in reply to Discocat]

Happy you’re pain free. I know how awful that pain can be

[cancersucks2]

The pain is what effects us the most. Let’s hope it stays away.