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Stunned

Nocillo profile image
62 Replies

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!!

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Nocillo profile image
Nocillo
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62 Replies
Georgiamjb profile image
Georgiamjb

Thank you for sharing the good news!!

blms profile image
blms

Wow that is great!!! Love to hear good news for all of us!

Anitafazz profile image
Anitafazz

That is awesome !!!!!!!! So happy for you

Nocillo profile image
Nocillo in reply to Anitafazz

Thanks!

Joannaaaa profile image
Joannaaaa

Delighted to hear your good news

Nocillo profile image
Nocillo

Thanks!

Itisfinished profile image
Itisfinished

Praise an awesome God!!

mariootsi profile image
mariootsi in reply to Itisfinished

Amen

Nocillo profile image
Nocillo

Yes!!

Pachira profile image
Pachira

Wonderful news!

debbiedo2063 profile image
debbiedo2063

Wow. Congrats fantastic news xxxxDebra

Wonderful news. I would have it confirmed with a CT scan just for complete peace of mind.

Nocillo profile image
Nocillo in reply to

I had a stomach endoscopy. The CT scans never picked it up because it was inside my stomach.

MyMiracle13 profile image
MyMiracle13

That’s wonderful!

Hazelgreen profile image
Hazelgreen

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.

Nocillo profile image
Nocillo in reply to Hazelgreen

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.

Hazelgreen profile image
Hazelgreen in reply to Nocillo

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

Nocillo profile image
Nocillo in reply to Hazelgreen

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.

Hazelgreen profile image
Hazelgreen in reply to Nocillo

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.

Nocillo profile image
Nocillo in reply to Hazelgreen

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!

8576 profile image
8576

Hurray! So good to see this news. Hope it continues and reduces the other mets as well.

Cheers June S.

BallerinaMel profile image
BallerinaMel

That is such awesome news! Thanks for sharing this!

Totheriver profile image
Totheriver

That is great news!! How did you find out you had stomache Mets?

Nocillo profile image
Nocillo in reply to Totheriver

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!

Valisa profile image
Valisa

Wonderful news! Definitely some worth celebrating!!

Dogmomtocockers profile image
Dogmomtocockers

So happy for you! Great news!

Gingerann1 profile image
Gingerann1

So happy when others on this journey get such great news. Provides hope and encouragement for the rest of us. Thank you for sharing! 👏

Thatflowerlady profile image
Thatflowerlady

That is wonderful ! Celebrate !

Shelly1009 profile image
Shelly1009

Hurray!! I'm usually happy to celebrate small victories but this is a huge victory. Congrats, I am so very happy for you!!

PJBinMI profile image
PJBinMI

Wonderful news! Do you have lobular bc? It often goes to "unusual" places.....

Nocillo profile image
Nocillo in reply to PJBinMI

I have both, but yes it was the lobular in the stomach.

Buster2020 profile image
Buster2020

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.

love2golfwell profile image
love2golfwell

That is awesome news! Hope you continue to have good outcomes with these medications.

BluHydrangea profile image
BluHydrangea

Wow! Congratulations! This is the great kind of stunned surprise!

mariootsi profile image
mariootsi

Awesome news! Amazing!

Andibo profile image
Andibo

What fabulous news!!!! Thank you for sharing!!!

stardust1965 profile image
stardust1965

That’s great news! Thanks for sharing it with us. 😊

Bettybuckets profile image
Bettybuckets

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!

Nocillo profile image
Nocillo in reply to Bettybuckets

That thought mine might be ulcers for the same reason!

Bettybuckets profile image
Bettybuckets in reply to Nocillo

I still worry that it will end up being ulcers PLUS cancer in the lining of my stomach. All will be revealed in time!

Adele_Julia profile image
Adele_Julia

Amazingly good news ! Thank you for sharing your "happy dance" with us ! xo

MBCinIowa profile image
MBCinIowa

Great news! So exciting to hear!!

MaryCos profile image
MaryCos

YAY!!!

Justme153 profile image
Justme153

So Good to hear!!! CELEBRATE!!!🎉🎊

Always lovely to hear such good news. Hope you enjoy many more yearsClare

Nocillo profile image
Nocillo in reply to

Thank you!

13plus profile image
13plus

That’s fabulous!

AnnaP668 profile image
AnnaP668

What wonderful news! Congratulations!

Fantastic news! Congratulations! Enjoy every moment! 🙏❤️🙏

Nocillo profile image
Nocillo in reply to hopenowandtomorrow

Thank you! I will!

Oh my gosh. I’m thrilled for you.

Nocillo profile image
Nocillo in reply to

Thank you so much!

Loriterranova profile image
Loriterranova

Great news!!!! I also have lobular and have been told from the beginning to be alert to any GI changes.

Nocillo profile image
Nocillo in reply to Loriterranova

No one ever said one word to me about GI possibilities. 😬

Loriterranova profile image
Loriterranova

Lobular Cancer has a propensity to metastasize to the lining of the stomach or peritenium..

Nocillo profile image
Nocillo in reply to Loriterranova

Thanks!

Arisgram profile image
Arisgram

Great way to start the summer! Congratulations!!

Nocillo profile image
Nocillo in reply to Arisgram

Thanks!

rubyc1234 profile image
rubyc1234

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?

rubyc1234 profile image
rubyc1234

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.

LotusAFlower profile image
LotusAFlower

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.. ❤️

Nocillo profile image
Nocillo in reply to LotusAFlower

Thank you!

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