Ibrance Arrived and...I'm Scared
Well, it's here. On my kitchen island with big "toxic" stickers everywhere. I thought I would be relieved. Starting on it might mean the end of all this weird pain and fatigue. Instead, I'm scared s-less to take it. I'm someone who doesn't take Tylenol unless it's absolutely necessary. (I'm not quite sure how I got through chemo 9 years ago.) I feel like my body has betrayed me. I don't trust it.
So, please ladies. A little suppprt. I don't like the 10 months disease free progression. I want so much more. I want to be here for the big "Jimmy Carter miracle drug," I want to see my girl into adulthood.
I'll do what I need to do, but can anyone tell me how long til it kicks in? Did anyone feel a difference in pain/symptoms relatively soon? Does anyone have advice on taking it? When is it better to/does it matter? I'm taking the Ibrance/Faslodex combo since I was on Femara/letrozole for 8 years pre- mets.
My husband says to cast my net. I'm casting.
Many thanks
Comments
-
azs40, When I started taking Ibrance and Faslodex 16 months ago, I was very reluctant to start. Like you, Until my MBC dx, I never took any medications with the exception of an occasional Tylenol. The Faslodex didn't worry me, but all those SEs listed for Ibrance made me think that I would become a sickly shut-in. Well, I am here to tell you that I feel great. Faslodex and Ibrance has been a really easy combo for me. My blood counts did drop way too low during the Ibrance first cycle, and my MO dropped my dose to 100 mg. Since then there have been times when I needed a 2 week break rather than 1 so my counts could rebound, but those times have been few. You might have read that low white cell counts would make you susceptible to frequent infection. To that I say hogwash. Infections have been uncommon for those of us on these boards. I have not been sick at all. My scans after three months showed improvement in my liver and bone mets. After 6 months on the combo, there was even more improvement - 2 of the original 3 liver mets were no longer visible, and the third one was tiny. Everyone's experience is different, but my advice to you is, "Just do it!!" As far as timing is concerned, it doesnt't really matter what meal you take it with as long as you take it with food at about the same time every day. I have found it easiest to take it with breakfast since it is the one meal that is consistently at about the same time.
Good luck. Come join us on the Ibrance thread and the Faslodex thread. The Faslodex thread has some good tips for what to do when you have the shots. Those tips are at the beginning of the thread.
One last thing, many of us live for a long time with MBC. Don't pay any attention to those outdated stats you might have read. We are not data points here. We are living, breathing people -individuals. I, for one, and planning to be around for a heck of a long time
Hugs and prayers from, Lynne
-
Lynne...thank you.
xo
-
azs40, I took Faslodex for four years. Ibrance for the last year of it -- once it was approved. Yes, the pill box looks scary. Yes your neutrophil level will go down.
But I never had any fatigue or any other problems. Some ladies do, some don't. Don't assume you'll have a hard time. Don't worry too much about the PFS stats in the Faslodex/Ibrance trial. We are all individuals and those are population data.
I haven't had mets symptoms so I can't comment on how long until they are better. [Well I did have symptoms, but the spinal fusion took care of them, LOL]
You can do this!
-
azs40, I had 16 cycles of Ibrance/Letrozole. It is very tolerable! I felt like a new person in about a month. I had intense bone pain at diagnosis of MBC, and it was gone! White blood cell count will go down every cycle, but I never had an infection. Biggest side effect is fatigue. then joint pain from the hormonal therapies. You can do this! It's nothing like the original IV chemo. Take with food. Full speed ahead and damn the torpedos! Love MJH
-
I clearly remember the day that the big box was delivered to me. It was scary to swallow the first pill. It's not about being brave, it's about making decisions. I have a very long history with B.C.
., which included lots of harsh chemo. I didn't know a pill existed to treat MBC till last December DX. In comparison, after i got over the shock, I decided it was worth a try. Guess what? It's working. Yes, some days SE are bad, some days not as much. I'm almost one year on Ibrance/ femara. I have mets in lung ,chest and liver.
I still get to do all of the things most important to me. Last night I went to a musical starring my granddaughter! I'm sure will get to do your favorite things, too. Probably for years to come.
-
Thanks again ladies for all your responses. I took the first pill last night and haven't exploded yet ;-). Looking forward to it kicking in and feeling like my self again.
You're all wonderful. What a great "net" you are.
xo
-A
-
The responses you've got have been reassuring. This treatment is relatively new for me. I'm on my 7th cycle Ibrance/foslodex. My three month scans showed containment. Next scans are scheduled for January 2018. I am pleased. My side effects are minimal. The worst is itching on face and neck, it comes and goes during each cycle and seems to be easing with each cycle. My WBCs drop, as expected, then they rise again. Slight fatigue and loss of appetite round out my side effects. Over all I feel good and not limited in physical activities. Give it a chance.
-
I just completed my second round of Ibrance/Faslodex and my tumor markers are down for the second time and are now in the normal range!! It works. I’m a bit tired the last two days of my “cycle” but am still able to work two jobs and be a full time single mom. It’s been very doable and, more importantly, successful!!
-
Thank you Iwillwin. I'm working full-time too. I took my third Ibrance pill last night. Had Faslodex injections last week. I don't know which one is working, or if it's just wishful thinking, but I feel a little better. Muscle spasms in my back - that were circulating from one spot to another for the past 6 or so weeks - are greatly reduced. I can move! Don't want to jinx anything, but I'm praying something working.
Thanks for you reply!
xo
A
-
Hi ladies, Thanks for posting all the good news. I start the ibrance/faslodex combo today. I think that is what it is! A shot once a month and then some pills that are delivered to my house. I am a little terrified too. I couldn't sleep last night and I have felt sick to my stomach since I was diagnosed with the mets. It's way worse right now! I don't know if any of you deal with this but I also have clinical depression and anxiety so that is what I am most concerned about. I can't handle anything making it worse.I also work full time and need to be there and not be dulled in my thinking ( that happened with chemo)
I will go at this with some happy / positive thoughts now.
-
azs40, that's excellent! So glad to hear you're starting to feel better almost immediately. Kill those cancer cells!
Spicedlife, good luck to you!
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