Metastatic Lobular Breast Cancer in Stomach

Posted by ja5747 @ja5747, Jan 4, 2019

Does anyone share my diagnosis of metastasis to the stomach? What drugs are being used? I'm six months into this diagnosis and have been receiving Faslodex injections every month. Recent CT and PET scans are clean but biopsies from endoscopy confirm it is still there, yet we don't know if it's better or worse. How are you managing your surveillance?

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@djwc

@claudiamaria so sorry about your new challenge. 12/4/2020 I was diagnosed with metastatic breast cancer in my bones. (Original diagnosis ducal carcinoma-no lymph node involvement-tamoxifen for about 7 years) After MBC diagnosis,
I started IBRANCE & letrozole-January 2020. Tolerating both-my side effects are insomnia & fatigue & arthritis type pain.

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Thank you! The last three of the six years since my breast cancer diagnosis I was on tamoxifen. Have your scans shown any improvement after eight months of treatment?

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@claudiamaria

Thank you! The last three of the six years since my breast cancer diagnosis I was on tamoxifen. Have your scans shown any improvement after eight months of treatment?

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I’ve had a variety of scans every 3 months-so far the IBRANCE & letrozole seem to be working as scans show no new activity. Hoping this continues. 🙏

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@claudiamaria

Six years after initial diagnosis of estrogen positive tubular and lobular breast cancer the lobular has metastasized to my stomach. I am being treated with Anastrozole and Ibrance. Looking to speak to others with the same challenge. Especially interested in knowing anyone who is on Ibrance.

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Hello @claudiamarie, sorry it has taken me so long to respond. I was diagnosed with stomach mets In June 2018, 5 years after initial lobular cancer diagnosis. At that time, I continued with Arimidex and also started Faslodex which I stayed on for 16 months with stable results, or at least what we thought to be stable - as I’m sure you know, lobular cancer doesn’t show well on imaging, and especially in the stomach so in addition of CT’s to monitor possible activity to other organs, I had a few Endoscopies to monitor. After the 16 months, I was diagnosed with mets to the liver and since then, the stomach has been pushed to the back burner. I stopped Faslodex and started Ibrance and Letrozole.. I tolerated Ibrance pretty well, one new thing that happened was that I would loose all the blood from my fingers quite frequently and had to use heat sources to get it back. All side effects from Armidex subsided after stopping as well. I was only on Ibrance for about 5 months as an MRI at that time revealed extensive liver lesions and we switched to a chemo drug. I’m so sorry for all the challenges you are facing with your stomach. Is there any discussion about surgery to open the gastric outlet, is it even possible? Are there other options to give you some relief? You are in my thoughts!

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@ja5747

Hello @claudiamarie, sorry it has taken me so long to respond. I was diagnosed with stomach mets In June 2018, 5 years after initial lobular cancer diagnosis. At that time, I continued with Arimidex and also started Faslodex which I stayed on for 16 months with stable results, or at least what we thought to be stable - as I’m sure you know, lobular cancer doesn’t show well on imaging, and especially in the stomach so in addition of CT’s to monitor possible activity to other organs, I had a few Endoscopies to monitor. After the 16 months, I was diagnosed with mets to the liver and since then, the stomach has been pushed to the back burner. I stopped Faslodex and started Ibrance and Letrozole.. I tolerated Ibrance pretty well, one new thing that happened was that I would loose all the blood from my fingers quite frequently and had to use heat sources to get it back. All side effects from Armidex subsided after stopping as well. I was only on Ibrance for about 5 months as an MRI at that time revealed extensive liver lesions and we switched to a chemo drug. I’m so sorry for all the challenges you are facing with your stomach. Is there any discussion about surgery to open the gastric outlet, is it even possible? Are there other options to give you some relief? You are in my thoughts!

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Thank you Ja5747!
Last week I had a stent placed endoscopically between my stomach and small intestine to bypass the obstructed gastric outlet so my stomach is now able to empty! Jejunostomy seems to be working. I have lost a lot of weight and my challenge now is to get enough nutrition. My stomach is not digesting properly because of the metastasis in the lower two thirds of the stomach. I am on anastrozole and Ibrance. Thank you for writing to me, it means a lot to me. I will be wishing you well and thinking of you too.
Claudia

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@claudiamaria

Thank you Ja5747!
Last week I had a stent placed endoscopically between my stomach and small intestine to bypass the obstructed gastric outlet so my stomach is now able to empty! Jejunostomy seems to be working. I have lost a lot of weight and my challenge now is to get enough nutrition. My stomach is not digesting properly because of the metastasis in the lower two thirds of the stomach. I am on anastrozole and Ibrance. Thank you for writing to me, it means a lot to me. I will be wishing you well and thinking of you too.
Claudia

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@claudiamaria, just popping in to let you know there is also an Ostomy support group here on Connect. See this link https://connect.mayoclinic.org/group/ostomy/

Living with a jejunostomy can be challenging, especially at the beginning. There are others with experience who are ready to answer your questions, listen and support you.

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@colleenyoung

@claudiamaria, just popping in to let you know there is also an Ostomy support group here on Connect. See this link https://connect.mayoclinic.org/group/ostomy/

Living with a jejunostomy can be challenging, especially at the beginning. There are others with experience who are ready to answer your questions, listen and support you.

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Thank you very much for pointing this resource out to me. I will follow your suggestion.

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@ja5747

Hi @colleenyoung, thank you for the reply. I read many of the pages of the discussion link you sent, but didn't see anything about stomach metastasis (wishing there was a search function to narrow things down a bit). With more time, I'll read more of the pages. Given the results of the recent scans, the recommendation is to consider a stomach resection. I'll be meeting with a surgeon to discuss. We are also waiting results of genomic testing to determine if a different drug is more appropriate. Until then, will stay with Faslodex and Arimidex (that I've been taking for 5 1/2 years).

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Praying for you.

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