Hello all! Have had bone mets since the beginning of this journey 6 years ago. Last January I was also diagnosed with stomach mets. Stopped taking arimidex and fulvestrant and was put on Ibrance and Tamoxifen. Had another endoscopy two days ago and the doctor said there is absolutely no sign of any cancer there at all and it was pervasive initially. I am absolutely stunned and so grateful!!! A small victory in a large battle!!
Stunned : Hello all! Have had bone... - SHARE Metastatic ...
Stunned
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Nocillo
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Thank you for sharing the good news!!
Wow that is great!!! Love to hear good news for all of us!
Delighted to hear your good news
Thanks!
Yes!!
Wonderful news!
Wow. Congrats fantastic news xxxxDebra
Wonderful news. I would have it confirmed with a CT scan just for complete peace of mind.
Nocillo• in reply to
I had a stomach endoscopy. The CT scans never picked it up because it was inside my stomach.
That’s wonderful!
Great news for sure!
I am curious about why tamoxifen (rather than letrozole) was prescribed for you with Ibrance. I gather you have just taken that combination since January (four months?). Will you continue with it now that your stomach mets have disappeared?
For all six years that you have had bone mets, did your treatment stay as "arimidex and fulvestrant"? Why was that combination prescribed for your bone mets?
Thanks for any information that you can share about your situation.
Yes, for the first 6 years I was on arimidex and fulvestrant. I believe the doctor thought those would be the most effective and give me the least problems in having a good quality of life. The doctor said I was taking Tamoxifen instead of Letrozole because I had been on arimidex. Maybe Letrozole and arimidex are too similar? I have only been on the Ibrance, Tamoxifen since late March. It took until early March for them to verify what it was and then I had to stop all medications and let them get out of my body before they started me on the new ones. I believe I will continue on this regimen for as long as it works. I hope that answers your questions. Take care.
Thanks for the information, Nocillo. Did you experience many side effects to the arimidex? I'm very glad that tamoxifen is working for you so far. It seems especially impressive though that it got rid of your stomach mets in two months. I hope it continues to work for you for a very long time! Tamoxifen itself should help strengthen your bones whereas arimidex (like letrozole) may have weakened them. Best of wishes, Cindy
Thanks! The only real side effects from the arimidex and fulvestrant combo was fatigue. And, of course, sometimes issues around the injection site and sciatica from the fulvestrant. I still feel fatigued and my hair is thinning with the new treatment, but I have thick hair. I feel extremely lucky to support these treatments fairly well. Today I did feel like crying though because I’m SO tired of being tired! I really can’t complain though. My husband is a gem and does everything I can’t.
I know what you mean about being "tired of being tired". I'm a decade older than you so I try to tell myself that age saps energy too. My husband and I try to go for at least a 30-minute walk every day, and I notice I have less energy when we miss getting out of the house. My hair hasn't thinned much with the tamoxifen. Perhaps, the Ibrance is to blame? I hope you are able to sleep long. Once I'm out of bed (I'm usually there about 10 hours), I find my energy gradually improves. I was always a night owl who found it hard to go to bed before midnight.
Yes, I’m a night owl too, but can sleep in as long as I want unless I have a doctor’s appointment. It’s my gift to myself now that we are retired. Yes, they told me the Ibrance would make my hair thin. I wish you well!
Hurray! So good to see this news. Hope it continues and reduces the other mets as well.
Cheers June S.
That is such awesome news! Thanks for sharing this!
That is great news!! How did you find out you had stomache Mets?
I was vomiting about 2 out of 3 meals, losing weight daily and really didn’t want to eat. My oncologist couldn’t explain it because my scans were fine. My primary doctor finally ordered a stomach endoscopy thinking I had an ulcer. They were all shocked when it turned out to be my cancer because it’s rare for it to show up there. The whole process took weeks to unfold and was very frustrating. I’ve never felt that bad in my life and so had two trips to the ER and one overnight in the hospital for vertigo in the middle of it all. I am thankful to all the scientists and chemists out there who invent these drugs!
Wonderful news! Definitely some worth celebrating!!
So happy for you! Great news!
So happy when others on this journey get such great news. Provides hope and encouragement for the rest of us. Thank you for sharing! 👏
That is wonderful ! Celebrate !
Hurray!! I'm usually happy to celebrate small victories but this is a huge victory. Congrats, I am so very happy for you!!
Wonderful news! Do you have lobular bc? It often goes to "unusual" places.....
I am so happy for you. The same has happened to me. I am on Verzenio and Fulvestdant. Spelling? So far two Pets have been clear.
Living in the present moment daily and feeling grateful and humble every moment.
Celebrate your good news.
That is awesome news! Hope you continue to have good outcomes with these medications.
Wow! Congratulations! This is the great kind of stunned surprise!
Awesome news! Amazing!
What fabulous news!!!! Thank you for sharing!!!
That’s great news! Thanks for sharing it with us. 😊
That is such food news! I recently was told I may have stomach Mets after the bone Metsdor 1 year... had an upper endoscopy and it was ulcers I had given myself from too much NSAID pain meds. I too was GRATEFUL!
That thought mine might be ulcers for the same reason!
I still worry that it will end up being ulcers PLUS cancer in the lining of my stomach. All will be revealed in time!
Amazingly good news ! Thank you for sharing your "happy dance" with us ! xo
Great news! So exciting to hear!!
YAY!!!
So Good to hear!!! CELEBRATE!!!🎉🎊
Always lovely to hear such good news. Hope you enjoy many more yearsClare
Nocillo• in reply to
Thank you!
That’s fabulous!
What wonderful news! Congratulations!
Fantastic news! Congratulations! Enjoy every moment! 🙏❤️🙏
Thank you! I will!
Great news!!!! I also have lobular and have been told from the beginning to be alert to any GI changes.
No one ever said one word to me about GI possibilities. 😬
Lobular Cancer has a propensity to metastasize to the lining of the stomach or peritenium..
Thanks!
Girlspitz
When I read the posts I note that some of the regular women who used to write are not writing anymore. I think of them a lot. Is N Stones still improving? Where is Sarcie? There was a Barb too. Do you speak with these people?
Because I read what you have to say a lot and I am impressed with your knowledge I have a question. I have an ovarian cyst that is enlarging and which they are not worried about and a uterus with endometrial lining slightly thicker that normal. Neither issues seem to be a problem . However, next Monday they will do a biopsy of the endometrial tissue. She is worried I was on Tamoxifen from 2005 -2010 and of course there is a connection between breast and ovarian cancer. I am wondering if they will want to take out these organs. Is there any need to take them out if they are ok?
Thanks for replying Sandra. I am not one to want things removed if there is no need. I dread the biopsy as I think they tried to do this years ago and it hurt. He said he needed to try again as he did not get enough tissue and I said "no". That had to be 12 years ago. I had some bleeding at the time which ceased.
Im just now reading this and so happy you were able to get the stomach Mets under control. I have ILC too so I do worry about where it can show up next . Wishing you more good days ahead.. ❤️
Thank you!
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