What happens after Ibrance/Femara stops working?
hi! I realize that some people do not want to look forward to the details once Mets are no longer “progression-free"; but I've been awake most nights thinking of the horror that lies ahead; not only for me; but for my show, 21 yo dtr & 19 yo son. I think it'd be helpful for me to know where this is all going for me (eventually; I realize that my body will succumb to the cancer I've now “fought for 10+ years.
mid love for anyone who is comfortable sharing any and all details that they are comfortable with; realizing that no two are exactly alike. I'd love to know also any tips or tricks (ie. Letters and memory books to leave for those I'll leave behind—I'm not the most focused person—so step-by-step would be best help to me) on trials/tribulations, accomplishments, what to pack for unexpected hospitalization(s); special memories to create (perhaps something I can do for my 3 most important people while I'm still able without it being forced or to planned; perhaps conversation starters, day trips, classes); it seems that in 2,5 years on Ibrance I realize each day together matters so much—but life goes on for my family-as it should be; I'm not outwardly I'll-though I do suffer some both physically/mentally & lately cognitively-but brain scan is clear x2!)
I should also mention that my br cancer spread to lymph and lungs & I started Ibrance/Femara combination 11/2017 and have been NED for 1-year. I feel ambivalent (for lack of better word) about this situation—grateful for every second these meds have given me and ungrateful for what having stage 4 has taken fron me (&my family)—not complaining at all as I know I'm very fortunate for being in NED; but sometimes I feel I guess I'm standing on edge of a cliff as I know how things can change quickly & progression is obviously what scares me most.
So if I could be enlightened on the unknown by shared experiences I think it may be therapeutic not only to me but to others who may hear only “we have a whole sleigh of meds to try after Ibrance"; it's comforting; but I guess it's the PTSD part of this whole disease/treatment course that keeps me up wondering, worrying...maybe help me to plan for worse times will comfort her, others in my shoes; but I'm hoping also it'd be therapeutic for those who have “walked" ahead of me to share their stories experiences planning with sense of pride. I don't think anyone could ever understand things unless try hee Re uve been in their shoes—maybe that's why doctors don't share the “what's next, then after that, etc. Any help with formalities like health care proxy, wills, end-of-life care decide Zion's, right-to-die (I live in California-recently relocated and do not onowww what laws are here regarding that choice—which I'm on fence about) after death arrangements (I'm catholic—but don't think I want traditional wake/fune Real—perhaps freama Tison; scattered on ocean-cruise or similar with small memorial service (our extended family/friends are all in Boston—so I don't know how logistics of all that'll ply out; but I'd like to have that all set to make things easier on my family & I can't even think of having them suffer watching me pass as I've been through that with 3 very close people in my life; I know how I felt and how the dying person felt and I know it isn't pretty—so I'd like to do whatever I can to make things easier for my family (husband is 55 & children are in college—I'd hate to be a big disruption to them during my end-stages. I'm so, sorry for the long-winded explanation—and also for everything everyone else is going through. Best wishes for strength and much happiness and comfort going forward to all. Thank you all in advance for your thoughts, humor, sorrows and the difficulty it may take for you to share and spell-out things to come as I know it's hard to put it in black and white. I send love and strength and thoughts and prayers to all
Comments
-
-
Thx VM!😍
Anyone who would like to share hereis welcome; can be cheerful/loving stories. Kinda wanted to hear some actual experiences too.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team