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Was anyone on this list “cancer free” until her initial diagnosis at stage IV? Also do you feel worse on the 7 days off?

Presence1 profile image
25 Replies

I was diagnosed Jan 3rd 2019 with secondary neoplasm to the bone. (Ribs and some in hip), and they think the primary source is breast cancer bc there was estrogen in the biopsy of my hips. But I just had a breast MRI and the tumor is so small it seems it is not detectable.

I am on Ibrance, Femara and Xgeva. I just finished my 2nd 21/7 and go today to start a new round.

It seems that I feel worse the 7 days off?! I’m new to this site a finding my way to a new normal.

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mbcfrom2017 profile image
mbcfrom2017

🙋🏻‍♀️

mjmom profile image
mjmom

Yes & yes.. do you have dense breast tissue? Hmmm

Presence1 profile image
Presence1 in reply tomjmom

Yes and I always had reg Mammo plus ultrasound and now Breast MRI.

But no tumor, (that they can find).

Selmac profile image
Selmac in reply toPresence1

Presence1, I had dense breasts. I felt the tumor deep in my breast. Had mammogram, nothing, Had sonogram, nothing. Had breast MRI, nothing, Had biopsy of breast tissue, nothing. I wasted 6 months while being told there was nothing there. Dr finally went in surgically and found the cancerous lump.

janetjanssen profile image
janetjanssen in reply toSelmac

Was yours Lobular breast cancer? They did not detect my lump with a mammogram either but this was back in 2002 so they did not do any other tests. I immediately walked to my surgeon's office and set up a biopsy and we found the breast cancer. I have been told that lobular cancer is harder to detect on mammograms. God bless you.

Selmac profile image
Selmac in reply tojanetjanssen

Janetjansen, I have estrogen driven cancer.

Mimigram profile image
Mimigram in reply tojanetjanssen

Same here, it never showed up on any scans. Surgery found it. Same thing happened with the 2nd finding of MBC. It should have shown up on a PET scan but it did not.

mariootsi profile image
mariootsi

Yes. I feel worse on my week off too!

Gwennie123 profile image
Gwennie123

Every month is different for me on Ibrance Xgeva and Faslodex. The first two months were horrible. Lots and lots of pain. Since then it’s much better but still feel terrible fatigue and occasional achiness in the ribs and back.I’m on month six

Barbteeth profile image
Barbteeth

Hi there It varies with me though a lot of ladies say the week off is worse..maybe because our bodies are replenishing red and white cells?.. who knows..a question for your oncologist?

Barb xx

Francesca10 profile image
Francesca10

I actually feel better off for the seven days and dread the start of next cycle. I am on ibrance/faslodex/xygeva. Ibrance is 75 mg. I am tired everyday after work and cannot wait to get home, eat and relax. If I could financially afford retiring I would but I can’t.

I don’t think it would be good for me mentally either. I am on anti-depressants and take Ativan when I need it. Friday is faslodex and xygeva shots. That’s when I get jittery. Its not something I think I will ever get used to. I have been in faslodex more than a year and on ibrance fourth cycle now. This is a rough road we are all on;am so grateful for you all but am sorry why we are all here posting💕

Presence1 profile image
Presence1 in reply toFrancesca10

I am sorry you cannot retire. I retired, and within the 1st year I was in so much pain but no one could figure out the cause. Then I got my diagnosis in January. I don’t think I could have worked at the same level bc the meds make my thinking fuzzy.

I will send prayers your way. Do you have a good support group at home?

I am sorry too that something like this has affected so many.

Hugs

Lorlal profile image
Lorlal

I thought I’d feel better on my week off, but so far it’s the worst. The fatigue is overwhelming during that time.

Cshipley123 profile image
Cshipley123

When I was first on Ibrance/Letrozol I felt bad the days off (really all of the time). My wbc counts dropped. However, after about 3 months I felt fine. The side effects went away and all I felt was a little tired. I wish you the best!

Have-faith profile image
Have-faith

My DX was stage 4 out the gate. Mamo did not pick up tumor even though it was the size of an almond and noticeable with the naked eye! It was as if this thing popped up to the surface over night. I sometimes feel achey when I go back on ibrance after the 7 days off. I use a sauna at the gym which helps. I also bought an infrared heating pad to lay on. Heat helps me feel relaxed and helps with the aches. My discomfort is not bad compared to how it can be. I have Mets on bones and liver. Bone Mets had disappeared for a few months then sadly returned. Now I am on faslodex with ibrance and an xgeva shot every 3rd month. Was on letrozole before. Hope this helps. Faith

shannamilton profile image
shannamilton

I am on month 6 of my treatment, initially diagnosed with stage 3, not 2 years later it came back to my spine. I feel worse on my week off. I have found hemp oil is a miracle for pain. I buy it on Amazon. It's legal in all states since it doesnt contain thc. I have tried medical marijuana and I feel the same effect from the $25 dollar hemp seed oil as I do the $150 medical marijuana oil.

Bubbles001 profile image
Bubbles001

I was diagnosed de novo stage IV after finding a lump in my breast and the doctor running a pet scan showing a single small net to my sternum. The mammogram only showed calcification and I had dense breasts. I feel tired towards the end of week 3 and in week 4 but I try to push through it. I was lucky enough to retire early so take it easier overall than when I worked.

hdhonda profile image
hdhonda

I feel worse the week off Ibrance.

Blessings, Hannah

Oliveoyle profile image
Oliveoyle

Welcome and sorry you need to be here. I thought I was in remission 4 years from Stage 3c but now docs suspect I was 4 all along. My breast tumors were not detected by MRI and the right breast was only detected because I had it taken off by choice with “cancerous” side. Something very wrong about that. Hope you will be so caring and compassionate with yourself as you take it all in. ❤️

Presence1 profile image
Presence1 in reply toOliveoyle

Sorry to read all you went through. Hope you are doing okay now. Good to be able to suppprt one another.

Hugs

I was the same. I had pain and loss of mobility in my left hip for almost two years before somebody finally gave me an MRI. It showed cancer in my bones and they believed it was Myeloma or lymphoma until I had the biopsy and it was confirmed as breast cancer. The struggled to find the actual breast cancer as it was a tiny spot in a duct. Biopsy confirmed it. I feel awful my last week of my Ibrance and the first week off. (My levels drop so low I’m normally 3 weeks off ). This is a great site for support

Presence1 profile image
Presence1 in reply to

Wow, so sorry to hear about your hip. I couldn’t believe that I suffered for a year but you had to suffer for 2 years!

How is your hip now?

in reply toPresence1

I had hip replacement surgery in October and it’s much better both mobility and pain. Still a little limp but I’m happy to be able to walk with just a cane for support. Thanks for asking ❤️

Gwennie123 profile image
Gwennie123

Yes. I was cancer free for 5 years. Original bc 2008 then clear until 2013 and clear again until 2018 when diagnosed with stage 4. First two times were very small tumors and lumpectomies. This time Mets to bones all over. Tricky cancer.

Becca65 profile image
Becca65

My 7 days off Ibrance was the worst! I figured some of it was the drug had been beating on my body for 21 days and my body was tired. The first half of the week off was always worse than the second half. I found except for trips to the Drs I did little in my week of because of the constant need to be close to a bathroom(diarrhea was the worst).

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