I am new to this group

[dkhky]

I have stage 4 metastatic Breast cancer, metastasis in all bones and bone marrow now in lymph nodes in chest and pelvis. To start Ibrance with Faslodex injections for 3 months if doesn’t work on to clinical trials.

[nstonerocks]

Hi

Hope the Ibrance and faslodex work. I’ve been on Ibrance over 3 years. Mets to lungs. Welcome to this great group of warriors. Nothing like talking to people walking the walk. The background in your pic looks amazing. Is it a favorite place of yours? Having something wonderful to think about and plan for really helps me deal with this “new normal” keep us posted.

[BeckyinMaine]

I am also newly diagnosed and found this site and our fellow travelers very helpful and supportive. Strength, energy, and healing to you.

[Snowcone16]

Nice to meet you. I was diagnosed January 30. I’m taking zolodex and xgeva shots since February. I’m just onto my 3rd cycle of Ibrance and letrozole. Happy to report minimal side effects.

I was lurking at several boards. I only joined this one however. Everyone here is positive, hopeful and supportive.

❤️

[PJBinMI]

I love your photo! Lovely scenery plus you have a great sense of style! I don't know quite what the most up to date thinking is within the community of bc oncs, but when I was diagnosed with denovo (from the first diagnosis) metastatic breast cancer in 2004, I was told by both my local onc and the bc specialist onc she sent me to for a second opinion, that 3 months was the minimum amount of time needed to see if hormonal treatment was working. The plan was if tests after three months of treatment (Letrozole and Zometa, Zometa being for bone mets) did not show improvement, that we would test again in another month..... but every thing showed alot of improvement at 3 months and I went on to get almost 5 years from Letrozole, then over 9 years from Faslodex. Ibrance and other targeted treatments for estrogen receptor positive (E+) mbc were not around yet then. We did add Ibrance to the Faslodex for awhile in 2016 but I did not tolerate it well and ended up with a lung condition called Interstitial Lung Disease (ILD) which the pulmonologist described as "gunk between the air sacs." But over all, I've done exceptionally well living with bone mets for over 14 years. Don't really know how much of the changes to my day to day self are from cancer, or cancer treatment or just plain ol' aging! I was 57 when diagnosed and am 72 now. I've gotten to meet alot of women living with mbc and besides their being more treatment options for us now, there are more support groups, more info on line, and alot more attention being paid to stage IV bc than when I was diagnosed. Also I see alot more women out and about with out covering up their bald heads! I think that is great! What I have told myself when a lymph node shows up with cancer cells is that the node is doing its job! They filter the lymph system and better the cancer cluster there than elsewhere! But I am definitely a glass is half full kinda person! My dogs, who are current barking at a repair guy who is in our basement replacing our 18 year old a/c that died last weekend, help me live in the moment! Pets are great for that, plus a good distraction. One thing I do recommend to people with advanced cancer is to see a specialist oncologist, at least for a second opinion. The top tier of cancer centers in the US are those designated "Comprehensive Cancer Centers". and those are listed on the website of the National Cancer Institute. They have bc specialist oncs who see patients and do research and are on top of the latest research. My own local onc suggested I see a specialist like that, and while I wasn't feeling a need to, I'm really glad I did! She did alot of ease the minds of my husband and grown daughter, who went with me. And when she did a manual breast exam, her hands felt different than the hands of any other doctor or nurse who ever examined them, it was as though she'd done it not yet hundreds or thousands of times, but hundreds of thousands of times and had radar in her fingers! Hard to explain but definitely a different sensation Anyway, it's too bad you needed to find us, but good that you did! I hope you will be doing well and writing to newbies yourself in a few years and for a good long time--and collection great hats and photos!

[Sunnydaz in reply to PJBinMI]

Hi I was just dx with “expected” Mets to plural area in lung. No other area has BC

Im getting another thorocentisis this week to make sure tumor grade is the same as my original BC in 2011. My Onc wants to start me on Ibrance and letrozole.

Was your treatment for 5 years “only” letrozole? I would like to start out this way but my Onc says adding Ibrance is better and wants me to be in a study.

thank you

[SeattleMom]

God bless you on this journey, dkhky! I am on same regimen, plus letrozole daily; diagnosed in November 2017. I'll just add that, once you are accustomed to a bit more lethargy (periodically) and some hair thinning, the Ibrance does not have overwhelming side effects. Your oncologist may have already mentioned that white cell counts often fall but adjustments can be made to the Ibrance dosage. I, too, am glad you joined this group! I've learned so much and have read so many encouraging posts! Good luck with your new protocol and think positive! XO

[Tam-56]

Welcome to the group dkhky. I was diagnosed in Jan and began treatment Ibrance and Letrozole just last month. I have Mets to hilar lymph node and underarm Lymph-node. This group is great and very supportive. I just read Radical Remission by Kelly A. Turner, Ph.D - very positive reflections on self healing that others have found useful. Can’t hurt, right? Good luck to you with your treatment plan and hope you will find support and encouragement here.

[Snowcone16 in reply to Tam-56]

I follow radical remission on FB. I haven’t bought the book yet. I am just finishing up

reading Spontaneous Healing by Dr. Andrew Weil.

❤️

[Clair19]

Welcome! You will get tons of great info, ideas, and meet a wonderful group of women here. If I’m feeling down I can always come here to vent. Good luck on your combo. I take Faslodex and Verzenio. Was on 100 mg Ibrance but my Neutrophils after 2weeks went to.5. Verzenio so far better. Glad you’re aboard.

[Kakoburr]

Blessings to you: I have been on that regime for over two years after mets to lungs and brain...and it is working! There are many more options now!

[HopeinNJ]

I hope the IBRANCE works as well for you as it has for so many of us on this site. Keep the faith. So many treatments in trials. I believe they will find a cure one day .... soon, in our lifetime ❤️

[Jacqk]

Lovely to hear your stories ladies. Good luck to you all ☘️. I am new to this site. Finished radiotherapy in March. All set to carry out trials. Had a bone scan which showed Mets to my spine and pelvic bone. Totally floored me but I’m getting my head around everything slowly. Should be going on holiday tomorrow but Oncologist won’t let me go due to not being on treatment for long. I am on letrozole, Ibrance and injection for bones. Doing okay with letrozole 🙏 had one course of Ibrance then blood levels dropped. Waited one week, levels picked up so on next course. 🙏 hope I can continue on this. Xx

[Jerseygirl45]

Hi welcome to the group. I was diagnosed in July 2016 with stage 4 mets to arms, hips, spine, ribs, pelvis. I was on letrozole and Ibrance xgeva ink once a month. Changed to Ibrance and Faslodex In March this year. But markers on on the rise again so I will have a pet scan this month and maybe a new med. But I am hopeful there are a lot of meds to try until they fine the best one. You will be happy with this group.

[Hidden]

I have Stage 4 with Mets to bones. I have had radiation and on Ibrance and Letrozole. Neutrophils drop each month for me and have to wait 3 weeks for them to come back up but my cancer has not spread and some bone regrowth so it appears to be working. Great support here. Good luck.

[RomanChariot]

Welcome! I wish you all the best with Ibrance! For me, it was very easy to tolerate, as was Faslodex. Unfortunately the two didn't work for me according to the recent petscan 1st of June. I am moving to Sarasota, Florida this week and will be cared for at the Moffitt Cancer Center. My oncologist has contacted the new onc there, and they have agreed on Taxol for now. I am also looking forward to possible clinical trials. My first diagnosis was in 2013, and I used Arimidex til Sept.'17, when I was diagnosed with metastasis to bones, lymph nodes and liver. Truly none of us ever thought we'd be in this situation, but we are truly blessed at this point in history. There are so many more options now. I look forward to keeping this disease under control for a long time. I'm finding this is the roller coaster of a lifetime, but I have also found that meditation really helps me stay well-grounded. This group is great! So positive and supportive!! So important!! Stay with us! <3

[lashinator]

Welcome-glad you found this site. So encouraging. I'm stage 4 to liver. On both Ibrance and letrozole and Lupron shot. Side effects have all been manageable for me. Stay the course of treatment, but always stay informed by reading up on what's new out there. Try everything that you find will lead you to a positive head space. Best of luck- lots of us out there...

[Bibfoo277 in reply to lashinator]

Thanks love this site , soft hugs too you during holidays 🤗