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MBC out of treatments
charfun
3 Posts
Hi

For several weeks I have hoped to find someone on my particular journey to share stories. Not completely sure how to succeed at that.

My diagnosis of MBC happened in Oct of 2017. Since then I have used several hormone and aromatase inhibitors as well as Ibrance(didn’t work) and various oral chemo drugs.

My bodies reaction to many of the meds has been intense nausea. (Very debilitating)

My last flare was about a month ago with the nausea so bad I stayed in bed for a couple of weeks. Last week I started on dexamethasone and am slowly overcoming the nausea.

In addition my pain component got much worse. The cycle is getting me down. Regular nausea meds not working. Pain meds and constipation,

this flare has been awful and my question is ‘this what I can expect going forward’ now that my cancer is not responding to treatment and I have elected to stop any more chemo.

looking to find someone having similar experience.

Feeling very weakened by recent episode. Would really like to know what’s next.

thanks
❤️charfun
8 Replies
altachica
87 Posts
Good morning charfun‍ . I also have MBC and I have taken the A to Z of treatments. All have worked for a while until they had to be changed. I’m currently taking a chemotherapy called Eribulin. It only takes a few minutes as it is given by syringe. I have had no nausea. What was the last chemotherapy that you took? Are you being treated by palliative and pain management doctors? They would be able to help you be more confortable. Your oncologist should have referred you to palliative and pain management department since you have elected not to take anymore chemotherapy. Message me if you have any questions. We are here for you. #advancedbreastcancer
Kims1961
2052 Posts
charfun‍ I see that altachica‍ has responded. I support her advice as well. Although I do not have MBC, I have a friend who does. She was able to find some relief through discussing the severity of the nausea she was having. She used a calendar and put a scale each day of how debilitating the nausea was. Sometimes it seems like nausea, fatigue, constipation - can seem "minimal" to healthcare providers, when you are suffering it is not.

Palliative care opens up some options for managing pain and side effects.

I'm so glad you are here! Please let us know how you are making out. Kim



charfun

I'm glad you posted.

I'm sorry to hear about the debilitating nausea. I hope that a palliative care team has been assigned to support you physically and emotionally.

There is a great website Canadian Virtual Hospice that I think you will find really helpful: Canadian Virtual Hospice. They have information about physical symptoms, palliative care, emotional health, spiritual heath etc. Have you considered trying a virtual support group for advanced cancer? I found this one Living with Chronic Cancer: Living With Chronic Cancer Support Group | Well on the Web (wellspring.ca). The first session starts next week.

Do you have someone helping you out at home?

I look forward to hearing back from you,
Lacey
Essjay
1418 Posts
charfun‍ no advice to add, just wanted to say I’m glad you reached out. Hope you can get the help you need. Kims1961altachica‍ and Lacey_Moderator‍ have given some great pointers.

best wishes, Essjay
Mammabear
130 Posts
This is a tough post to read and all of us with MBC biggest fear. I would hope that the docs would make this time more comfortable for you. I have no advice but will send all my good vibes that you find a balance of pain-free comfort soon.
charfun
3 Posts
Thank you for your reach out Mammabear‍ . (And others too.)

This last month has been very frustrating for me with trying to find anyone who may be going though a similar experience.

The questions about disease progression are so variable for each of us but I have still wondered if there are marked plateaus as treatment stops working. And how long do they last? Is it swift or slow? My MBC is the hormone positive variety which has not grown much since diagnosis. How long/ far a future could I have left? Does it ever stabilize and not progress for a bit? Are there choices or advice to be given by those who have gone before.?

Prior to the recent physical ‘crash’(nausea, constipation pain) three weeks with limited activity, everything was going pretty smoothly. Slowly I am trying to regain some level of activity and now I wonder, what’s next?

With Covid and retirement, this past year has been a huge struggle trying to find meaningful purpose and I have slid into a monotonous routine of idleness. My nature has always been active and opportunities for action are so limited. How are others filling the void of social isolation?

The doctors have all been wonderful. The attention and care has made all the difference to getting back on my feet. At no time have I felt forgotten.

Still hoping to find a kindred spirit with similar concerns to share information about the last leg of this ourney.

Thanks again for your reach out. I am not really comfortable with any of these online resources but struggling to answer and stay connected.

cheers
charfun
❤️❤️❤️
altachica
87 Posts
Hello charfun‍ . I am am in a support group for advanced cancer patients that has some MBC patients in the same boat as you. We meet every Monday 1:30 to 3:00 pm Eastern Standard Time on Zoom. This group has been a lifesaver for me because I feel I’m with people who “get it”. #advancedbreastcancer
https://wellspring.ca/online-programs/programs/all-programs/oasis-advanced-cancer-support-group/
elle29
220 Posts
Hi Charfun How r u now ❓Where did u get info Treatment reached s marked plateau ? I had a cancer nurse tell me not to get ahead of myself ❓I am MSB.
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