Hello. I’m a Her 2 positive cancer survivor from 2016. In September during a routine six month follow up my Oncologist found 6 lymph and one met on my back T11 and I had my first chemo two weeks later. After further testing my Her 2 had changed to negative. The chemo was much stronger than the targeted therapy in 2016, within days my counts dropped to 0.1 and I could hardly move. My hair fell out two weeks later.
I began taking Verzenio with early side effects such as stomach issues but they stopped after the first month. Now I am experiencing tremendous fatigue and bone aches. I also get a two shots once a month. I live alone and with Covid feel isolated and have no-one really to talk to except my doctors. I’m so glad I found this group.
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Buster2020
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Welcome to this group. I am sorry to hear that you are facing breast cancer a second time and that you are now metastatic. I think it comes as a shock to all of us whether we are diagnosed de novo or have faced cancer before. I hope that now you have found this group you will not feel so alone in living with this disease. Please reach out to any of us on here. There will always be someone to listen to what you have to say. I do not have any experience with your particular treatment plan, but I am sure there are ladies on here who will be better able to advise you about that.
I have been hosting weekly Zoom meetings every Friday since the end of October, and will be having the last one tomorrow. But after a break I plan to start them back up again in the New Year. If you would be interested in joining in with future Zoom meetings it would be great to meet you. There is no set agenda and you don't have to answer any difficult questions or anything like that. We just introduce ourselves and talk about whatever we feel like discussing, whether it is our latest treatments, how we are feeling and we even talk about non-cancer related topics.
Thank you for inviting me to Zoom. I have yet to use it but will seriously think about it after the first of the year. I do feel like finding this group will make a huge difference in my not feeling alone with the treatments and my emotions and the many questions that come up about meds and surgery and so on. Thank you for reaching out!
Hi I've been a member for a couple of years and would love to join a zoom meeting to discuss therapies and life.
Oh, dear Buster2020, I'm so sorry! What a shame about the diagnosis and also about the timing/situation with the virus...
Welcome to the community, I think you've come to the right place to get great info and support.
I'm glad you're done with the chemo and are now on Verzenio, which will hopefully give you a good quality of life, maybe especially after you get more used to it? I think many of us experience fatigue and bone aches....Unfortunately i have no good advice on how to deal with the side effects so hopefully others will chime in re: that...
My very best to you...Please keep us posted on how you're doing...
Dear Buster2020: Sorry to hear of your surprise MBC diagnosis after your initial diagnosis & treatment 4 years ago! I was diagnosed 2.5 years later after my initial treatment (Masectomy/chemo/radiation). It was a total shock. I had a bone met in my left pelvis. I am Estrogen positive & am taking IBrance/Faslodex/Xgeva. I am doing well after 21 months of treatment.
I pray you adjust to your new normal & engage with us fellow MBC’ers who are all on this journey together.
DearBuster2020Sorry that you are here and welcome to this group that none of us want to belong to. Somehow, we manage to keep mentally upright and cheerful even if sometimes it is only pretend. I am really sorry that you have had such really unpleasant news and I hope that the side effects lessen.
I too live alone and so I can relate when you write about the feeling of isolation. Connecting with those of us in the group assuages that feeling of isolation and is replaced by a sense of camaraderie. We all have the big C and so we all get on with it, supporting each other as we go.
Yes, it is quite an unexpected road isn’t it? I am positive most of the time it’s my nature, and am sincerely grateful for all that is going well in my life. The holidays seem to be particularly challenging to navigate, it’s usually hard for me to reach out but I’m awfully glad I did!
Welcome to this group of wonderful and supportive women! So sorry that your life has taken this surprising turn— for me it was a real shock to have BC return with bone Mets 11 months ago. I’ve been taking Ibrance/ exemestane and have found the side effects have eased somewhat from the first few months.
I can relate to your isolation— I retired in January and have found the COVID quarantine has been an odd way to begin this new phase of my life— I can’t volunteer anyplace... so now trying to stay busy and positive with projects at home.
I have discovered this forum has helped me learn and reminds me of the importance of living every day with joy— despite my diagnosis.
I wish you the best with your treatments and know I will see you , “around”.
After the cancer returned for me, I started on Verzenio and letrozole. The first month was horrible but oh-so worth it. It wasn’t until this year—3 years after starting Verzenio—that the med stopped working for me. I switched to IBrance which did nothing. Now I’ve started Cap., which has its own type of side effects. The points being made are: Verzenio worked quite a long time before it didn’t, and there are still a whole lot of options out there to be tried.
You are not alone. We’re all there with you, always. Try to remember that. As a wise person once said: absent in body but present in spirit.
Finally, i may have cancer, but cancer doesn’t have me.
Thank you for letting me know how long it worked for you and that there are other options when it stops. I try not to let the cancer define who I am, but right now as I grow accustomed to the new diagnosis and treatments and doctors visits and fatigue and bone aches etc. it is front and center right now. This new diagnosis has certainly been my teacher and in many ways a gift in reminding me to appreciate each and every moment as a gift. I didn't realize how isolated I felt from loved ones not wanting to talk to them too much because they are so frightened for me and I need to stay positive. Seeing the fear in their eyes made me more and more private about my own concerns and needs. Thank you for reaching out about the Verzenio. I've been lucky so far with very few side effects. Andrea
So sorry about your diagnosis, but glad you found us- we are a supportive little community and the ladies here will soon seem like friends.You can ask questions, share developments and in time offer your own support- or just “lurk” and learn how others are coping.Hope you are feeling better soon.
So sorry about your news but this is a wonderful group - the women on here are so well-informed and generous with their help. I have learned loads and it has made me feel so much better. I'm sorry i have nothing to offer in response to your particular situation - I've not taken those drugs - but I wish you well and am rooting for you. x
Hi Buster2020 I'm glad you found this site . Everyone here is so open and honest about how they feel and what they are going through. It helps the rest of us to understand that what we are feeling is normal. It can also let us know if maybe it's not so normal and that we should talk to our oncologists and not just brush it off. This site lets us know life does go on. Maybe a little different then before but we go on. Take care we are here for you!
Do you have ibrance as an option? I have been on it 2 years in October 2020. With almost total disease gone! HER 2 negative -- Mets to bones and liver straight outta the "you have cancer gate". I think the side effects are less harsh? I've had zero.
Hi, did Ibrance take a few months to work? My oncologist wants to switch me after one month to Xeloda. His reason is that he thinks if we wait too long, I won't be able to handle Xeloda and miss the window of opportunity. He says I have gone down tremendously in performance since September. I think that I have only because I broke my femur and then had a second operation on my tibia (preventative rod a month later) but I am working with PT to get out of the wheel chair and walker. I think I give more of an appearance of fraility due to the wheelchair. I would really like to give the Ibrance a chance as I am handling 75 mg well and as I said I just started. I have also developed skin mets in the form of 4 or 5 little bumps and red pimple like things on my back. It is all so frightening. What is next?! How long did it take Ibrance to work for you?
So far the Verzenio has had few side effects. I've been okay with it but it is good to know of my other options. Congratulations on doing so well in your treatment. I'll talk to my Oncologist about the Ibrance. Thank you for reaching out. Andrea
Hello. Just wanted to add my welcome to this group. We all value being here often as we ask for info or just follow along. It is a tremendous support group especially for people like you, living alone. I am a bit late chiming in as I was away yesterday and just saw your message this morning. I live in Ontario Canada and am in a different time zone. About 3 hrs. later than you I think. So nice to hear you are mostly a positive person. I am also. My nickname from my neighbours and friends is Pollyanna. I am not the same medication regimen that you are. I take Ibrance with Faslodex injections. I also now have nodules growing in my left lung.
I was diagnosed in 2013 with Her2 positive and mets to my left hip. I also have four pelvic fractures but miraculously not a problem. Also dealing with severe Osteoarthritis in my knees, legs and feet. If you are computer savy, you will like meeting a few of the women here in Sophie's Zoom meetings. Such a good idea.
Wishing you well with your treatments. Be sure to let your doctor know about your side effects. They just might want to adjust your dosage. Very often that helps.
June, Thank you for reaching out. I am comforted to hear that you are so positive after dealing with your cancer since 2013. I was told by my retired GP that my outlook wasn't good and it really spun me out. She is in her early stages of dementia and I doubt she would have said that to me otherwise. A positive attitude and self love is so important. I read the book, Radical Remission by Kelly A. Turner, Ph.D. it was recommended by my amazing Oncologist who did not share the same opinion as my former GP. He feels that am doing really well. I do have an amazing dog and a daughter in the next town, but Covid complicates visits due to her being in school. I haven't shared my anxiety and isolation with anyone until this group. I am really happy to have found it. Thank you! I wish you only the best and am sending healing thoughts your way
Oh, well we know the first opinion is wrong because you are reaching out to this group and that is a good sign of things going well and moving forward. You sound pretty positive to me! Don't worry plenty of good drugs to help fight cancer and more I think, on the way. Not confiding about your illness is a personal choice and when the time seems right and the person is right. For me I didn't hesitate to long in confiding in close contacts. They want to share your journey and are a great support also.
Thanks for the healing thoughts. Gladly accepted. Right back at you.
So sorry to hear about your cancer reoccurrence and welcome to this community of the brave, compassionate and knowledgeable ladies. I was diagnosed de novo in July and still dealing with shock of this terrible diagnosis, so I can definitely relate. This group provided the support that family and friends can’t.
Hi Buster,A very hearty welcome to our group. We always send hugs when needed and share our experiences. My sister-in-law moved from Santa Fe to Virginia about a year or so ago. She is single too. She has an unusual first name that starts with a F. If your paths crossed you would remember her name. Again, welcome. You now have lots of new friends. Blessings, Hannah
Hi, yes, such a surprise. I am so positive -- not generally, but in denial about any frailties or health issues -- that I couldn't believe it that I had mbc 11 years after my original, not so bad, HR+ breast cancer, that it is "incurable." I have, so far, done well on Ibrance + Fulvestrant and Xgeva for bones, but something popped up in my last scan. Such a roller coaster, but I have been surprised at how well I am doing. Life goes on, not interrupted.
I have one bit of advice (other than coming here, as you have done): I take 150 mg of Wellbutrin XL every morning. It helps with the fatigue. Doesn't eliminate it, but it helps with depression from inactivity. I have most of the day with good energy,
JerseyJazz -- re: isolation. This COVID makes it so hard, especially now when they say the old and vulnerable should not go out at all. Especially hard living in the city. I can't just take a walk without encountering many people, and I live in a yellow zone. I am especially worried about Christmas. Thanksgiving was okay because I cooked and planned to meet a friend outside but we ended up canceling. I spent the day on phone with friends. Christmas is harder alone. I always had a cousin visit, we got a tree, opened presents, cooked together, went to see the tree in Rockefeller Center. This year, no visit, and I can't go see my closer relatives because that would be 3 new households who will be together, and staying over. How are you handling this?
I began taking wellbutrin as well. It is helping my emotions even out but not the fatigue. I have grown used to napping which isn't a bad habit to begin. I have a one year old puppy and he is my constant companion. His presence helps immensely. I live in a small town in the historic side and it's quiet and slow and I'm able to walk around without too many people as well as walk my dog. I know I am anemic and that could be the cause of the fatigue. I was told to not eat red meat so have still been figuring out my diet. Thank you for your kind message. I hope you are able to have a sweet holiday. It is quite an adjustment dealing with such a diagnosis, I am mostly optimistic and focused but yes there are days and this group has been such a help already. Please take care. Sending a big smile and hug.
Hey Buster, I was diagnosed de novo just this past July. So, I am not a lot of help on the medical side outside of what I have personally experienced so far. But, I did want to say that I live alone too, and... with or without COVID... I am here for you if you need support.
Forgot to ask you about your amazing dog. My husband and I where heavily involved in dogs and animal behaviour at an amateur level over our younger years. Our last dog was a wonderful Australian Shepard.
Oh my. That is a mix. Sounds great. All those breeds have intelligence and good nature in them. If they are nicely bred that is! I know the Aussie, (I assume that is Australian Shepard, not an Australian Cattle Dog), and I know the Bernese Mountain Dog, but what is in the Doodle? (besides poodle).
Glad you found us but sorry you had to join us ❤️ I was also dx in 2016 and had mastectomy, chemo, radiation and reconstructive surgery. After 2 years of intolerable abdominal pain I was dx in February of this year with MBC with mets to my peritoneum. I've been on Ibrance and Faslodex since March and am getting ready to switch to Verzenio. Glad to hear that your stomach issues resolved quickly. I'm nervous about switching as I'm still working f/t as a surgical nurse. Diarrhea and working in an OR don't really go well together!! The bone aches are likely from your Faslodex shots. The estrogen suppressors and blockers are known for that. I find that if I try to stay more active my fatigue and bone aches are better. Again, I'm so sorry you're here. There's a messaging feature on here. If you're looking for a "penpal" just reach out.
Thank you for sharing. Carry Imodium with you. I found that after quitting coffee my stomach was better as well as anything spicy. I also eat a banana right before taking my morning and evening pill and it helps for some reason. I’m sending you a big hug and hope your new treatment works well for you. I appreciate your reaching out and your advice.
Dear Buster, I just wanted to tell you to keep your chin up and don't loose hope. I too have many painful bone and body aches to deal with. You are not alone in this fight and I wish you the best.
Thank you for reaching out. I can't tell you how much better I feel knowing there is such an amazing community of women who have this diagnosis. It makes me realize I am not alone. I hope to be there for everyone as well. Today was a good day. I've learned to take it one day at a time. I think that Covid has made it difficult, especially with the holidays. I am sorry to hear about your bone and body aches. I wish you the best too.
Buster.. Covid and holidays has indeed made it more difficult to take pain. I find it hard that for me, I have les distractions of being with friends in person, and yet more work and money doing Christmas shopping for grands by on-line purchases. Still, I can settle in with noticing the natural beauty and the beauty of being in solidarity with other women who get it..
Am glad you could find it a good day today.. I only had 30 percent of a difficult time today and I was able (this time) to not let it ruin the 70 percent.. In this together.
I am sorry to hear about your diagnosis. It is a lonely disease because if you live with other people, they don’t get it. This amazing MBC community will keep you company. There are some funny writers too chin up, it gets a little bit better (mentally at least) after you get over the shock.
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chin up, it gets a little bit better (mentally at least) after you get over the shock. 
Nothing working on My Daughters MBC
Just starting ibrance 
Will the tight feeling ever get better?
First Progression - Terrified
