Hi ladies! It sounds like most of us have been enjoying living our lives and then out of the blue that nasty thing that was becoming a distant memory comes back to upset our world again I was just diagnosed with a small spot on my sternum. I’m 61 and have been on tamoxifen for 10 years. When first diagnosed, my doctor put me on anastrozole but it made me extremely exhausted, violent hot flashes and made my feet hurt. I’ve been on letrozole for over a week now and so far so good. If this one continues to do well I will be going on Ibrance next week. He also talked about putting me on Xgeva but after reading more about it I’m not going to do that one. I don’t currently have a bone density problem and all those side effects and reviews of it scare me!
I will be having ten radiation treatments as well since I only have the one small spot right now and it’s not where I had previous radiation
It’s been very encouraging to read of so many of you who are also on the letrozole and Ibrance and are doing well! Certainly gives me hope for a good future!!
Thanks for being there and helping with your own stories Always good to know I’m not alone!
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Ilovehorses
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Thank you! It’s very encouraging to have found this group to see others who are on the treatment I will be on and are doing well. I love seeing how everyone celebrates each other’s successes and send positive thoughts and suggestions if things are not going as well as hoped. Thanks for reaching out!
Welcome on here and I wish you well on your new treatments . I have had a very positive experience with Letrozole and Ibrance (34 cycles so far ) , so I do hope you are put on this too . Do ask here if there is anything we can help with ... we all have similar experiences and have lived with it !
Lovely to see you have horses as they will keep your mind occupied ! Take care and keep in touch ! x
That’s so good to know that you are doing well on these medications! I’ve always been into natural remedies but also realize that there are times prescription meds are needed so hearing positive things about them certainly helps ease my mind. Yes the horses are my therapists for sure. Don’t know how I would get through life without them!
Hi Barb! Yes it is sad we are meeting here because that means we are both dealing with something we’d rather not be. But it is wonderful that there is a place we can meet others who are going through similar things to gain strength from each other. Horses are wonderful therapists and it seems often the only time my mind leaves other problems is when I’m in the saddle and get focusing on my horse Hope you can do more riding in the future! Stay in touch!
I'm another horse person! I have one, a former race horse named Liam who now does very very low level eventing with me. He is the best therapist ever. Glad to meet you...although sorry it's here... One thing, I fell off a few weeks ago and despite bone mets was totally fine. My Onc. said he credits the Xgeva for how I bounced instead of broke. You might want to ask your doctor about it further.
I’ve got 2ottbs, one now retired and one that is 8 yrs old but thinks she is 2. Also have my daughters retired paint mare. I ride nearly every day but just for my own pleasure. Always working toward the goal of perfect partnership! I love eventing and went to Fairhill a couple years ago as a spectator. Would love to be able to do that! Not sure I have the nerve anymore but quite fun and inspiring to watch! Have to say your the first one I’ve heard say positive things about xgeva! But I’m glad it’s working for you!! Got to love the TB’s, they keep us on our toes!
Ha. My son, who is a professional, used to live in Chester County, PA and we have many friends who competed at Fair Hill. Our daughter retrained an OTTB right off the track from Maryland and is just about to sell her before going to college. They are the best. I stick to the (very) little stuff--that's the great thing about eventing. You can watch the big riders go over big jumps, then stick to the pee wee levels yourself and still have fun.
The Xgeva is not a problem at all for me, I had to do quite a bit of dental work (that needed doing anyway) as you can't do anything invasive while on it--implants, for example as there is a very rare side, serious effect that impacts the jaw bone. . Otherwise it's been fine. Apparently an ancillary benefit is it may even help the cancer stay in the bones just a bit longer, without spread to other organs. But everyone is different. I saw you could not tolerate Anastrozole. I couldn't cope with Tamoxifen back when I was stage one...
I am on Ibrance, Anastrozole and Xgeva plus work with a nutritionist in my oncology office who did extensive bloodwork to recommend supplements based on my nutrient profile. I was diagnosed about 1 year ago--July 2019. It's not fun, but so far it has been manageable.
It is interesting to hear your report of your experience on anastrozole. I was put on it right after my mastectomy and had horrible muscle pains, so bad that I had a hard time getting out of bed. I was switched to Letrozol with absolutely no problems on it. You are The first person I’ve heard say they had problems with anastrozole so I’m glad to hear that I’m not totally crazy!
Welcome to our group. It’s a great caring group of supportive women.
I also appreciate hearing you had problems with anastrazole! While I didn’t have muscle pain my feet hurt terribly and I hated the thoughts of getting out of bed, would have preferred to stay there all day. So far no problems with the letrozole other than I seem to wake frequently through the night but am able to go back to sleep I can live with that! Thanks for the welcome!
Yes, out of the blue is about right. I'd had 26 years. Thought I'd escaped! Unfortunately mine had got around before they found it. Scattered was what the doctor said after my first scan. But I'm off for my third month blood test today, and hoping the improvements shown continue. I feel good but had tried cutting out pain meds, however over the weekend the twinges in my back tell me I need something, then I don't have constant reminders of my condition.
I'm 71, but still 18 in my mind!
I had tamoxifen 10 years after the first time, I'm wondering if it would have helped if they'd never taken me off. Or continued with some kind of monitoring. But then it felt good at the time to be free!
We never know for certain if different actions in the past would have made a difference in our condition now. My dr has been wanting me to go off tamoxifen and do one of the other ones for the past couple years. I kept telling him if it’s not broke you don’t fix it! I had no problems at all with tamoxifen. Now I wonder if I had done that would this have shown up now Can’t go back though, only forward. Take care! Happy to get to know you!
I wonder the same thing. I was on Letrozole for 5 years and because my risk was so low they said I could go off of it. It wasn’t bothering me, but it was so nice to be free of bloodwork and appointments, so I went off of it. Three years later, I had bone mets all over my back and 2 crushed vertebrae. I’m 72, going on 73 this next month, but until this I was no more than 40, busy with volunteering and grandkids. Now I have to be careful not to use too much energy at one time or I’m down for a week. I’m hoping that the next medication won’t make me as tired.(Currently Ibrance/Faslodex/Zometa. I’ve been more tired since I switched from Letrozole to Faslodex.)
Elaine
Hello and welcome.
There is a load of support on here, with lots of great advice.
A lot of ladies have researched natural remedies and supplements to take alongside the meds (you have to be careful because of how they interact with the Ibrance), so pop a post up and they will answer your questions.
Thanks Clare! I’m a huge fan of researching what I’m getting into, that’s how I discovered this group! I’ll be sure to take your suggestion and check the information provided by others because that’s often the way to find what can work best. Thanks for being there!
Thank you for being here and best wishes with your treatments. It certainly is a shock when we think we were done with cancer. I was clear for almost 5yrs. when I got my mbc dx.
Thanks for responding! I must admit the first few weeks my head went from deepest despair to anger to trying to get a positive spin on it all Reading some of the posts here has been so very helpful. We are all in this together, no one quite understands unless they are walking down the same path. Take care and stay in touch
Welcome! I’ve also received radiation recently (on my back for soft tissue lesions.) I started anastrozole after my back surgery and I did very poorly on it as well..I became so weak day after day I thought I was dying..it was such a scary drug for me. Letrozole on the other hand I have been able to tolerate very well. I’m on my first week of ibrance (100mg). Xgeva has literally been a lifesaver because my bones were so weak. So, don’t let all the listed side effects scare you! You’ve found a great site with a bunch of very sweet and knowledgeable ladies! Mandy
Amazing how we can all respond so differently to these drugs isn’t it!! Sometimes it seems you just have to give it a try and see if it will give you a good life taking it From what I’ve seen there are quite a few of us who couldn’t tolerate the anastrozole yet do well on the letrozole. I intend to explore this site quite a lot, what a wealth of information!
Hi,
Welcome to this site! I hope you will soon feel at home here.
A lot of ladies on here dealt with early stage breast cancer, and are now metastatic, so they will be able to relate to your particular situation. I was diagnosed de novo with metastatic disease back in 2018, having had no prior cancer diagnosis. It came as a shock, as I didn't expect to be dealing with this in my 30s.
I hope the radiotherapy is effective at treating the spot. Perhaps you can think about xgeva some more. I have been on zometa (a bisphosphonate) since June 2018 with no adverse side effects. If you have bone metastases oncologists like to offer bisphosphonates to help strengthen the bones.
Thanks Sophie! It’s so interesting reading all the stories on here. Some very similar and some a little different but all of us want one thing and that’s a quality of life after diagnosis! Goodness you are young to have had such a terrible diagnosis. I was 49 when I first found a lump in my breast and everyone couldn’t believe that I had been struck with cancer as there was no history in my family and I was the fitness queen! No one is exempt!Thanks for reaching out and I wish you the best!
Hi . I was diagnosed in June after a bone biospy. I just found this website and it has been a big help. It has been a journey to find treatment. Started trying to get answers in March. It began with rising tumor markers, then one was out of normal, then MRI showed suspicious lesions for mets. My first time with breast cancer was November 2008. I ended up getting a mastectomy on the cancer side then at reconstruction I had the other side removed. I did chemo in 2009 and took Femara until 2016. Dr's kept telling me I was cured, but I was not feeling well over the last few years. I had severe pain that moved to various parts of my body which began about a year ago. Bad fatigue too.
The scans, MRI's show multiple lesions in my bones in numerous places and one lesion in the lung. The team that I am working with ordered 10 radiation treatments. I think it was the table, but something made me hurt really bad. It was very hard. No sleep because of pain. Finally by the time the treatments were over the pain was managed better. After the radiation, I started the oral treatments. I am now on Ibrance 100mg and on my 6th dose. Took 8 doses of 125mg and had to stop. Also Femara and monthly Zometa. My oncologist does not understand why I was taken off Femara in 2016. He said I should have been on it for 10 years. I do not like the Zometa but my oncologist is insistant that I try to get 6 doses. The drug works on a pathway that the cancer in the bones needs. Living beyond breast cancer utube I think has a video on bone mets. youtu.be/8AmoeY9ohoY
There is a lot of helpful information here. Sorry to hear that this thing has come back. There seems to be more ways to fight it now.
Thanks for responding! I wanted to watch the video before I got back to you. So much information out there! My problem is exploring this and researching things concerning my horses all while working full time and maintaining a home all by myself!
I also had a rising tumor marker when I had my blood test for my yearly exam. After a PET and CT scan showed the spot on my sternum I realized that had to be the pain I’d felt there at the end of May. At the time I wasn’t sure what it was as I only felt it when grasping heavy things or pushing against something. Oddly enough I could do push-ups though without feeling it It went away after 2-3weeks so I had attributed it to some sort of workout related pain. I did also have some numbness in that area too though that I’d never had there in all those years. Just goes to show we need to be aware of what our bodies are telling us!
It’s interesting that you had done chemo and yet it still came back. I have a good friend that had bc a few years before I did and she had a mastectomy and chemo and thinks she will never get it back because she did both. I don’t want to rock her world by telling her there are no guarantees!
I first had a lumpectomy and 2 years later a mastectomy and radiation. I turned chemo down. I suppose every one of us can look back and wonder if we’d done things differently would we still have this diagnosis today. I guess we will never know
All the best to you in your treatments. I hope they will give you a good prognosis in the future. Take care and thanks for the video!
Welcome! My original BC diagnosis was in 2006– Jan 2020 I’m MBC, treatment with Ibrance, exemestane and Zometa. Wishing you the best with your health and treatments.
I was on IBrance and letrozole for 3.5 years. It was a reasonably good experience. I attained NED in 4 months. My hair thinned a tad and I had some controllable mouth sores. I then took Afinitor and exemestane for 6 months. It held my cancer steady but caused lung issues. I’m now starting Piqray and Fulvestrant. Fingers crossed! I understand that the last (?) stop is chemo unless something new comes along.
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