Are there any topics that you are int... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Are there any topics that you are interested in learning or discussing?

dandrews profile image
24 Replies

SHARE your thoughts with us.

24 Replies
Moveit2012 profile image

As a single woman, I am trying to determine how to prepare my home and life to enable me to be as independent as possible for as long as possible. Currently I have bone mets only, T5/T6 and T10/T11, rib, sacrum. I know that eventually-hopefully in many years-I will not be able to function at my current level and just want to be prepared.

Buffwright profile image

Incidence of infections like UTI while on ibrance and whether they’ve been hard to kick.

AlisonGilmore profile image

How successful is Faslodex'i've been feeling great from started taking.have scans next week and am so anxious

nclui01 profile image

Hi, so I would LOVE to hear about anyone doing any STRICTLY ALTERNATIVE treatments for metastatic breast cancer. Also, the more info. about your situation, the better...ex..age at diagnosis, any previous conventional treatments, what EXACT alternative treatments you've tried, how long you did them for, and any known benefits of them. Thanks!

Jnprsn profile image

Updated lifespan statistics would be nice but I believe the government releases them.

Wagdogchop profile image

ARK 2018

Over the last 3 months I have been treated with Ibrance in addition to Letrozole and Zometa [every 3months], Before commencing the Ibrance cancer markers had fallen to 44 and no traces of disease were found ineither organs or bones. Since Ibrance medication has been added to my medication regime I have continued to feel very well,scans remain negative and cancer markers have fallen to 25. Unfortunately, Ibrance has been having a negative effect on my ALT liver enzymes causing their readings to peak at 230 then begin to fall during the week that the drug is not taken. As a result, the resumption of each of the first two cycles of treatment were delayed and for the 3rd and last cycle the dose of the drug was reduced to 75mgs. despite these adjustments the rise in liver enzymes continues to follow the same pattern,as a consequence my oncologist has advised discontinuation of the Ibrance treatment. Has anyone else had a similar experience, and if so, what advice has been given?

Mcap profile image

I started out in January of this year with what they thought was just going to be a chronic condition with hormone positive her2-negative breast cancer. Stage 4 with nodes in lungs. Letrozole and ibrance Shrunk the breast tumor some but the lung nodes kept growing. So I had a lung resection and they found that my cancer was of a neuroendocrine type. Retested of my breast tissues found that they were the same. So I've been on five cycles of carboplatin and taxol. I now have spread to my liver. My doctor no longer thinks that I have a chronic condition. She tells me that there is very little known about neuroendocrine breast cancer and that my cancer seems quite aggressive now. She has sent off blood, Lung and breast tissues for testing to see if I might have a gene mutation and what my options for treatment May be. She also mentioned that we could look into a clinical trial. I'm so glad that everyone seems to be having good results on the ibrance. I wish I could be one of them. But with the aggressiveness of my disease I feel like I may not be around that long. Any information on neuroendocrine breast cancer?

Mcap profile image

Forgot to mention, I also have alot of bone involvement after the 3 months on ibrance.

Presence1 profile image
Presence1 in reply to Mcap


So sorry to read your story. How are you doing now? Have you learned more about the neuroendocrine breast cancer?

RLN-overcomer profile image

Good morning : I know you have support from a couple of the pharmaceutical companies, but I, and I am sure others would like to see Webinars, and get information on natural modalities, herbs, supplements, and simple healthy living, which would also include exercise for all ages and stages of this diagnosis. I am grateful for the small groups that Share has had, where we have gone to China town to find supplements, herbs, and information , but the groups are too small, and the group leader speaks too low. Everything that I can hear that she speaks on I have already had this information for years. So I personally really didn't find any benefit from this outing in China town. I am looking to become a certified holistic teacher, I just need to make the time.

capemaggie profile image

Is anyone taking medical marijuana to calm the nerves while on Ibrance and faslodex. Just askin.

Shirlbird54 profile image
Shirlbird54 in reply to capemaggie

I am. I was on faslodex and Ibrance and did well for 11 months. Then boom no more.... It stopped. I started on medical marijuana and also Rick Simpson. That is some powerful stuff. I don't like being out of control so I stopped the Rick Simpson. There are alot of great things out there that can help you if you are in pain. I use the vapes.

Dflur profile image
Dflur in reply to Shirlbird54

I tried the Ric Simpson too! Too powerful for me. I’m on 125ml Ibrance with Anaserozole.

Becca65 profile image

More information about HIPEC and the scraping they do first. An area dividing up some of the rarer mets into groups to help those of us out there find each other without searching for days and days. Where we can share treatments had. What works what doesn’t. I have still never found a single person with the same met as myself and I would so love to.

Gemgardens profile image

I found it helpful to find out lung issues are common with Stage WTF cancer. The draining and pain from it is time consuming and frightening. I would be interested in more discussion about that. My favorite oncologist thought it had something to do with cancer but wasn’t sure what. He retired early because he couldn’t stand dealing with insurance companies. That’s another good topic as I’ve had to fight for many treatments.

Carcinomacarolyn profile image

I would like to hear real life stories of how Xgeva worked. How much bone loss from cancer did it fill in? Did it help anyone with bone pain due to it strengthening the bones? Is there evidence that it stopped or slowed cancer growth in patients? Are percentages available to these questions in relation to before and after imaging?

DTendler profile image

peritoneal carcinomatosis, breast primary;

PI3 kinase and ESR1 mutation

Thank you.

Janeway19 profile image

I'm ecstatic to be NED for nearly seven years and counting....but my initial treatment coincided with EXTREME life implosion in all areas of my personal life, and the two combined wreaked havoc on my memory and cognitive processing, not to mention impacting my sleep cycle, depression, and overall fatigue. I've been slowly improving since my worst year (three years ago)...but I've been struggling to communicate with people (medical, friends, supervisors). I feel like being NED makes the rest of me invisible. All people see is - no tumors! Just go to the gym! This is of particular concern when it comes to maintaining my SSD. I am very poor, live alone, have no family within 1000 miles....without my SSD I would have died by now but from stress, not cancer. I am interested in anything that helps me better communicate with people about my non-cancer conditions. Especially when it comes to maintaining my SSD. The thought of being dropped, and the hell that would put me through getting a new job etc, much less more hell if/when tumors return later.....

I'm starting to think I need to see a lawyer to help me with this?

Janeway19 profile image
Janeway19 in reply to Janeway19

ps I'm stage 4. My original mets were to lungs and lower spine.

Twiggersbloke profile image

Yes; prognosis for MBC progression from bones to lungs and then to brain. Any treatment suggestions?

Judyww profile image

Stage 4 mbc will be starting on xeloda.

Any information will be appreciated

Zennia profile image

I would like to hear more about picray. I am currently on this treatment.

Birdee profile image

I'm interested in learning how chemo affects the brain and what is happening to cause neuropathy.

MyMiracle13 profile image

GAMMA KNIFE SURGERY 10-25 Mets to Brain

Would love to know about researches and findings on Gamma knife surgery done on multiple brain Mets 10-25 tumors. I have read some articles on these but would like to know if there are more recent articles or news on this.

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