Sharing Diagnosis

[Kdiet]

I really cherish this website for all of good information and support. It would be so much more helpful if writers/participants gave their diagnoses. Otherwise, I am afraid that I am making inappropriate comparisons.

[blms]

I have MBC since 2017. 24 years ago I was stage 3B, ER positive HER2 -.I did the standard treatment for 6 months then radiation, next tamoxifen then aromadex for the next 9 years then nothing. In the fall of 2017, I noticed my breathing was off and I had an X-ray to find pleural fluid (although not much) and cancer in the lining of my left lung. I went on Ibrance for about 5 months and all clear. In OCTOBER 2019, I felt odd and knew something was up so I asked for scan to find that the cancer had spread to liver and bones. So, I went back on ibrance for 3 months and first two looked good and then not so much. So, here I am on IV taxol once a week for three and off 1. After the first round, I asked to be off the steroid which was an amazing difference and felt great all week of treatment and all t he time basically. A bit tired but did not stop e from doing anything I wanted in course of day or evening. Now this crap!! So that is my background.With that said, I also see a Chinese doctor whom has ben treating me for all 24 years and she give me some things that help a lot. In addition, I take numerous supplements as well as eat a special diet now of added protein and still continue to eat my dark green legs, carrot juice, goat kefir, etc

[Kdiet in reply to blms]

My journey has been similar. Same diagnosis in 2000. All good until 2/2019 when my sternum cracked. Did Taxol to shrink tumors then radiation. So far 18 months Ibrance 125 and Letrozole. They say I can go a long time time. But who really knows and the pills are hard. Think I need some emotional support. Other than this chat room, I don’t know one other person in my situation.

[blms in reply to Kdiet]

where do you live and where are you being treated?

[Kdiet]

New York and South Florida. Main oncologist at Weil Cornell.

[Hazelgreen]

Interesting to read your comment this evening, Kdiet - I had just mentioned to my husband during our evening walk that I thought it would be useful if the MBC details for all the women on Health Unlocked could be compiled along with their MBC treatment histories.

Of course, the type of MBC (ER+/-, HER2+/-, luminal or basal, specific mutations or not) is important in determining treatment, and the order of the various treatments one is likely to be offered. However, age, and length of time since early breast cancer (now called "MFI" or "metastases-free interval") may also be relevant factors in determining how long one might expect to continue each treatment.

Given that there are over 4000 women on this site, it seems to me that we can learn much from compiling our statistics to not only help ourselves plan our futures, but also help treatment researchers plan their data collections on individual participants more precisely.

[Lulu4545]

Hi to all,I've put everything I know about what I've got in my presentation.

I'm kind of new here, but I believe it might help someone in the future.

Have a nice day

Lucie xxx

[Valisa]

Diagnosed MBC de novo in Dec. 2018 at age 58. Extensive bone mets, small lesion on lung and liver. Prescribed letrozole, Ibrance and monthly xgeva injection. Started with 125 mg Ibrance and now I take 75 mg due to low neutrophil counts. I had 6 rounds of radiation to my lower spine in May 2019 due to pain in that area. The radiation alleviated that pain. I am doing well and last scans indicated everything was stable.I am so thankful for this site, the support and shared information is invaluable. Always feels better going into an appointment having more information.

I think having this information in our profile would be more helpful if you feel a need to compare stories in the future. Might be easier to find what you are looking for.

[ChathamLady]

Dx de novo January of 2021 with bone Mets to spine, ribs and pelvis. Had a lumpectomy in December 2020. Clear margins. No lymph node involvement. Excruciating back pain sent me to ER where it was diagnosed. 10 rounds of radiation and no more pain. On verzenio, lettrosol and Xygeva. First scan in March was stable but real teat will be in June. These are great drugs but I’m so scared they won’t work or nit for very king - yes I know they all fail at some point.

This site has been incredibly helpful. I pray for everyone going thru this and send you virtual hugs!

[Staysha]

I’m one of the freaky people who had er + her2- in my breast but the Mets in my lungs were opposite er- and her2+. Ugg. I was on taxotere to fight both kinds along with herceptin and perjeta for the her2+. I had a mastectomy and lymph node removal to completely get rid of the her2-. I’ve had radiation on my breast area and under my arm to try and stop it from growing back. I continue every 3 weeks on the herceptin and perjeta to fight the her2+ in my lung.

I was diagnosed stage 4 de novo in Nov 2018. My last scan in January showed no cancer for the first time. I pray that it stays this way for a long time.

Stacy