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SHARE Metastatic Breast Cancer

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Jimmjill profile image
17 Replies

Hello. Received the stage 4 breast cancer diagnosis three weeks ago. Have had the first of my chemo treatments last week. At the beginning of this journey just learning facts and where to get support. Physical and emotional support. Thank you for this availability to learn and ask questions.

Jimmjill

Pittsburgh, PA

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Jimmjill
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17 Replies
Kats3 profile image
Kats3

Hi Jimmjill,

What type of BC do you have? And where are your mets? Do you know your subtypes like ER+, Her2+, etc? Perhaps if you gave that info to us, people with a similar profile can respond with their experiences which should help you a lot. What type of chemo are you getting?

Anyway, welcome to the Community! I know that we'll help you with feedback all that we can.

Best wishes, Kats3

Jimmjill profile image
Jimmjill in reply toKats3

Hello Kats3,

I'm still learning what all is important to know and what makes the cancers different. My cancer is HR+ ER+ and Her2Neu+

Set up for six sessions of taxotere, herceptin and perjeta. With ongoing herceptin after as long as 'working'.

Had PET scan with cancer lighting up in lymph nodes in abdomen, liver, L5 vertebrate and left hip. These spots were described as minute with 'just to watch' with the chemo. And the breast of course.

Pain is high, mainly due to fluid in lung. Cancer did not show there just a symptom from the breast cancer. And the chemo is kicking my butt right as this moment , but am only five days after first treatment. To be expected.

Will do what I need to at this point.

Thank you,

Jimmjill

Meadesmith profile image
Meadesmith in reply toJimmjill

Did they consider ibrance letrozole combo. For hr+, and why not xgeva. Just curious, my diagnosis is similar and these are my miracle drugs.

Jimmjill profile image
Jimmjill in reply toMeadesmith

I really can not answer these questions. I will definitely print these off and discuss with my dr. My dr has stated different combinations to move to if this isn't showing improvement with 'markers' after two-three treatments.

Thanks for the input. Needing all the information I can get!

My2greyhounds profile image
My2greyhounds

I had a similar diagnosis. Her2neu+ and er+pr+ with 2 lesions on liver. I did 19 rounds of taxotere plus Herceptin and perjeta. Had very good results. Switched to aromatase inhibitors plus continuing on perjeta and Herceptin indefinitely. My last 2 pet scans showed no evidence of disease. You can do this! It was hard with the chemo but now it almost seems like a distant memory. Drink lots of water after treatments and try gentle exercise if you can. Those 2 things helped me so much. Best wishes to you!!

Liz

Jimmjill profile image
Jimmjill in reply toMy2greyhounds

Thank you for sharing a part of your experience with results. Sounds positive to me. Am a heavy water drinker and get my10,000+ steps daily. Some days easy to do, some not so much! Thank you again for the communication.

Rhwright12 profile image
Rhwright12

Hi Jimmjill!

The initial diagnosis was the hardest part for me. It's very scary. Had bone mets. Was triple positive also. Had Perjetta and Herceptin also. Had 6 Perjetta till cancer levels lowered to remission level and now am continuing on Herceptin and Tamoxifen indefinitely. No real side effects to either so no biggie.

Good luck with your treatment. Perjetta can cause quick onset diarrhea. So take Imodium before u leave the house. Me and some of the ladies in the chemo room laugh about this now but it's not funny at the time. 😀

I live just south of Youngstown Ohio about an hour from u. If u ever need face to face support let me know...

-Heather

Jimmjill profile image
Jimmjill in reply toRhwright12

Thanks for sharing Heather. Glad to hear about the remission. Hope mine will be as well. Will keep my meds in stock to fight the side affects. So far that hasn't been a problem but could change any day.

I work in Washington, Pa which shouldn't be too far from you. Maybe when I get over this 'chemo kicking my butt' phase we can have a face to face. As I think it would be positive to talk to someone: been there, done that. And not friends and family that you are trying to help cope with this phase in your life.

Thanks again for the reaching out. Something needed right now.

-Jill

Rhwright12 profile image
Rhwright12 in reply toJimmjill

I understand helping family cope. I've always been the rock in the family. But to some extent it was good for them. Anyways feel free to contact me for coffee even if it's several months down the road when u feel up to it...

-Blessings!

RLN-overcomer profile image
RLN-overcomer in reply toJimmjill

Greetings: JimmJill/warrior/over-comer. Chemotherapy (aggressive chemo) was no day at the beach for me some 9 and a half years ago.When I finished my chemo, I actually looked forward to my radiation treatment, and I coined a phrase back then "radiation vacation/radiation celebration". I know people who had what was themed" no more chemo parties and bald is beautiful parties" with loved ones.After chemo I had so much more appreciation for even the smallest things we all took/take for granted in life.I was truly humbled.May God's grace and mercy rain down on you.Fight, Stay strong warrior/over-comer.

daf10 profile image
daf10

Feeling alone Not knowing what to do Glad you found our community Here you can find the help and support that you need to help you face your cancer

kTOT profile image
kTOT

Hello, I am also triple positive with mets to liver and spine. On herceptin, perjeta, taxotere and xgeva. Just had round five on Friday. Had repeat scans, after round 4 and tumors are shrinking so I stay the course. This is a great group for resources and support. It is tough. The diarrhea like someone else mentioned is no joke but does get better. Nice to meet you and good luck. Katie

I had this treatment in 2013, then continued with Herceptin, Perjeta and Exemestane (instead of Tamoxifen) until this past summer. The Taxotere is the killer one. I would have 2-3 good days after treatment before the stomach issues started kicking in. I also had neuropathy in my feet from it.

As far as pain goes, terrible back pain is how we discovered the mets to my spine (and liver, but no pain there) but the pain went away after treatment started..

I haven't seen anyone else mention this, but hair loss is likely, starting around 17 days after first treatment. Some salons will buzz cancer patients in treatment for free. ACS can help with wigs

Check out breastcancerfreebies.com

AnnieAppleseed profile image
AnnieAppleseed

An evidence-based Handout to help Reduce treatment toxicities that I created for Annie Appleseed Project, my nonprofit. annieappleseedproject.org/w...

PJBinMI profile image
PJBinMI in reply toAnnieAppleseed

Annie Appleseed is a great group for info about CAM (alternative and complementary medicine)! I've been trained by NBCC as a bc advocate and have attended a number of BC conferences, including the San Antonio BC Symposium and Annie Appleseed is the one CAM group I trust. Just passing that along..... And last couple of conferences I attended, several of the oncs speaking talked about cancer as an inflammatory process. My primary care doc had just recommended the following to help fight inflammation: 1 cup per day of tart cherry juice, the spice turmeric (aka curcumin/cummin, used alot in Indian food), fish oil, and glucosamine/chondroitin. I don't remember to have all of those everyday but I do use them....have no idea how much that has contributed to doing so well, started maybe 6 years ago, have been stable most of 13 years with mbc.

AnnieAppleseed profile image
AnnieAppleseed in reply toPJBinMI

That's great. You are lucky that your Oncologist is alert to new information (I mean new in the sense of NOT learned in medical school as nothing 'natural' is taught. ONLY pharmaceuticals and tests. Too bad for others.

PJBinMI profile image
PJBinMI in reply toAnnieAppleseed

Thanks! She's about 70--old enough to know she doesn't know it all! Ann, I've talked with you at a couple of bc conferences, and I really admire the work you do. Thank you for working on our behalf!

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