Ibrance letrozole after chemo since July 2016

Me2 days ago

Hi. My name is Julie. I was diagnosed with breast cancer November 2014. I had surgery and radiation in 2015. For a year, I thought all was well. All mammograms came back clear. Then in April I got real sick. Couldn't eat for 20 days. My famy took me to the Emergency room July 4th 2016 where I was diagnosed with metastatic cancer. I had 6 rounds of chemo during which I was trying to recover from losing 50 lbs and all my muscles. Now I take ibrance and letrozole. I am regaining my strength and a little weight. My hair is growing back. I am glad to read that others have lived years with this disease because I thought that I was going to die soon. Best wishes to all. Thanks for the chance to tell my story.

35 Replies

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  • Do u have any side effect from either medicine?

    If so what is it?

    What's the strength of the ibrance?

  • My ibrance is 125 mg. it is hard to tell what side effects I have because I am coming back from near starvation and I had RA before cancer.

  • Congratulations Ibrance works well for many patients One of the SHARE volunteers has been on it for three years and is doing well her major complaint is sore muscles from the femara Please keep us posted on your treatment and remember we are here to support you if you have a down day

  • Thank You

  • I didn't have good side effect

    Have like my whole body hurt

    Had detached retina with lots of bleeding in the back of my eye that I had to get emergency eye surgery

    Took me off until this healed then started it back at 75 mg ibrance

  • That is scary. How long have you taken it?

  • I started with 125 mg then to 100 mg then now 75mg

    Was diagnosed November 20015, started treatment December. Been on these medicine since then

  • It took me 8 months until I had a day that I didn't think about having cancer 24 hours a day. How are you doing?

  • Hi Julie, you have come to the right place to meet people who are surviving the metastatic cancer diagnosis -- for years! Surviving, living, in spite of the horrible diagnosis. I, too, have been diagnosed with metastatic cancer (breast) and thought it was a death sentence and only a matter of time. But once I found this site I have found out -- people are getting through the diagnosis and living -- for years ! We have hope, we have medicines and treatment -- in spite of the side effects -- we can continue living and enjoying day to day. And not worrying about what will happen tomorrow when we wake up. Thank God for the wonderful doctors and treatments that keep us going.

    Never give up on yourself Julie. There is always hope and joy in the everyday....,

  • I am so glad to hear you are on the mend. I don't understand the not eating part with reference to the Stage 4. I am on Letrozole and Ibrance too.

  • After a lumpectomy and radiation, I thought I was all good. Mamograms came back good. I wasn't taking estrogen blockers and not seeing the cancer dr. After a year I got real sick and couldn't stand to smell anything. Including the ink of the newspaper. I couldn't eat or look at food. I thought it was because I had taken some Tylenol 800 for a cracked rib I thought that I got from coughing too hard and lifting my Great Grandaughter. My regular dr gave me pain pills and sent me to therapy. I became bed ridden and didn't eat for 20 days. When I went to the emergency room I was diagnosed with stage four. I think that the calcium in my blood from cancer eating the bones is why I couldn't eat or stand to smell anything. I have not heard anyone else saying that they had that symptom.

  • Hi Gorden,

    My story is similar to yours. I had a lumpectomy + radiation 2012 into 2013. However because I was Est+ I was put on an anti-Estrogen pill, Arimidex. 1 1/2 years later I also had a cracked rib. I was put on Ibuprophen. Well one week later I had pain in the opposite rib + saw my GP again. This time they were suspicious and sent me for x-rays. Something didn't look right. I kept saying that I had been doing a lot of lifting of my suitcases when I had gone on vacation. They didn't buy it.

    I was sent for a CT scan and then an MRI. During all of this, I was put on heavy-duty pain killers and they wrecked my appetite and I couldn't eat either! The smell of food turned me off completely! I ended up in the ER and wouldn't you know, throughout all this, I COULD NOT reach my Oncolgist who was in a city 1/2 hr away! My primary doctor had to hunt him down. Finally I had an appointment with him and he said I needed a bone biopsy. Well, the cancer facility NEVER called me with an appointment! I ended up in the ER a second time and this time I was so weak I could not make it back for any bone biopsy at my original Onc's facility! I was done with him and stayed in my own home town with a new Oncologist taking over and getting me the bone biopsy which showed bone mets.

    I'm being treated with Xeloda right now. Have been on it close to 2 years. I'm also getting Zometa infusions which literally saved my bones! I was in dire pain!

    I'm wondering why you were never put on an anti-hormone pill after your radiation? Usually ER+ women are put on something for at least 5 years. My sister was and so was I. She's lucky she had no metastasis.

    Are you getting a bone strengthener like Zometa or Xgeva?

    Because I'd been on 4 other anti-hormone pills, I could not be considered for Ibrance with Letrozole. A consulting Oncologist that I saw told me this. She suggested increasing my Xeloda which my Oncologist did. She also recommended 2 drugs that could be used next for me should I become resistant to the Xeloda.

    It's good to get another opinion from a different Oncologist. My Onc favored it right from the beginning. It also helps them to see if they're current with new medicines and treatments.

    I'm currently seeing yet 1 more Oncologist approved again by my doctor. She has a new idea for my treatment and my Oncologist welcomed it. I feel fortunate to be able to do this. Two or three heads are better than one!

    Are your mets strictly in your bones? IV chemo was never recommended for me. I guess the anti-hormone pills work better for ER+, Her2- women. Are you Her2+ or -? That would determine if you get Herceptin or not.

    Keep us posted. Just know that you're not alone in this battle and that there are lots of treatments out there! Good luck! Kats3

    P.S. Are you gaining any weight back? I lost about 30 lbs. and have gained back about 16 lbs now. I'm taking vitamins and trying to eat well.

  • Thanks for talking to me. I didn't take the anti hormone pills because I decided not to. I was going all natural. I thought that was a big mistake. But you did and the same thing happened. Maybe it was good because now I'm on ibrance. I do zomeda once a month too. I'm HER positive. I have a very good Dr even though we had a bad start because I wouldn't take tamaxofen He got mad and I never went back for a year until the er dr called him. The mets were in my bones and lungs and they thought on my liver It is funny how we both had reasons for the pain trying to figure it out. Mine was lifting a heavy baby. I am babysitting her again I only gained about 5 lbs but I'm getting my muscles back. I wish you the best. It was nice talking about things with you.

  • Hi Gorden,

    Are you on Herceptin too? How are you doing with the Ibrance? Any recent scans? I'm glad you're getting regular treatment. I take supplements too, like Turmeric, mushrooms capsules, etc. My doctor has okayed this. Do you have any bone pain? I do if I overdo. I have lots of mets to my spine, pelvis, ribs, etc. I'm having an MRI of my hips and pelvis at end of April. I only take Ibuprophen now and my appetite is much better! I'm glad you're doing better. The weight will slowly come back. Keep in touch! Kats3

  • I only take the ibrance and letrozole I take a vitamin C and B12. All the other vitamins I was taking when I got sick so I haven't started back. I hardly ever take pain meds even Advil. I just rest. I am lucky that I am not working just babysitting

  • I hope your scans are good. Blessings to you. I get scans in May. I would rather not

  • How was your MRI?

  • I have been taking the same medication too since september 2015. So far so good. God bless you

  • Blessings to you too.

  • I'm on letrozole only now. I have fatigue and muscle pain but it beats not being alive. I was also on Herceptin and Tykerb which eliminated the breast cancer. So now I'm just on one medicine and so thankful that I can enjoy my family and friends.

  • Greetings Sister/Warrior I love the rationale of your post.Gods continued blessings to you and your loved ones Amen

  • Hello. Welcome. I am glad you have found positive feedback and hope here.

  • I was on letrozole too for over 2 years before I had a small liver met reappear rather larger than it had been. It appears we do not have access to Ibrance here in South Africa so could not take the combination which seems to work so well for you guys over in the US. The letrozole did leave me with rather painful ankles - some arthritis/arthralgia and am presently on Xeloda which seems to be working well - though one marker keeps going up bone and CT scans are all clear other than the vastly shrunk liver met. Hope you get as much from this site as I do - it is great

  • My sister in law is from South Africa. I can't bieve you can't get ibrance I'll be the guinia pig Maybe you can get it soon if you need it. Blessings to you too

  • i am on ibrance and letrozole. this is my 22 month. met with radiation doctor today who said the ibrance did its job. all cancer is gone except primary tumor. and she thinks 20 radiation treatments will shrink it to nothing. looking forward to the decades ahead. the chemo fog and the fatigue are my big challenges. i had to stop working and movein with family. now it looks like i could be independant again!

  • Oh I am so glad to hear. I take the same medication I have been on these two pills since September 2015 and I have some side effects. Today I started my new Ibrance cycle and this week I have a Pet scan. A little bit worried but I pray a lot. Keep up the hood work. I am ver HAPPY for both of us.

  • Good luck to you be positive and fight,I started in 07 with stage2,hhad mastectomy chemo tamoxifen,now stage 4 came back in the bones in 2013 switched to letrezole, now it started to show activity this jan now on aromasin. Cancer is a ugly gift that keeps giving,you just be the warrior and show it you're the boss

  • I am surprised that having a mastectomy doesn't seem to be more of a deterrent. Blessings to you.

  • Are you on ibrance too?

  • Hello from another Julie. I was recently diagnosed as well. Stage 4 right off the bat. I also take letrozole, Ibrance and Xgeva. So far so good. In three months the cancer is responding to the treatment. Try the best you can to stay active. Just a little every day and be gentle with yourself!

  • We have been taking these meds about the same amount of time. I started tending my Great Grand Daughter again. She is almost 3 and is keeping me more active. Plus I eat more fruits (her left overs). Thanks Julie for your letter. Sounds like we have a bit in common. I'm on Xomeda for bones. I think that it gives me a fever. I will see when I go back for more in a week. Blessings to You.

  • So glad I found this safe place to share my story. I love gardening and looking so forward to being outside and planting my flowers. My garden is my peaceful happy place. Food doesn't interest me like it should. Trying to eat more fruits and vegetables. Sometimes, I am just not hungry. I go to see the oncologist once a month with blood work every two weeks. Praying the meds continue to do their job!

    Keeping you in my thoughts and prayers.

  • I did the blood work every two weeks for a while but now only once a month. Are you having too low white blood cell counts ? I am glad you have a garden. I would rather do yard work than house work any time. I am happy for our correspondence

  • Hi Julie, it's nice to know that after all what u went through u are fine now, God bless u with a healthy and long life. My sis 34 had breast cancer in her left breast in July'16, triple negative with 14 nodes affected. Now after taxin chemo and radio on 15th March 2017, she again has on the right one and with affected nodes. Chemo is on and this time she is being given carboplatin and abraxinin chemo now. It's the most difficult time of our lives. I am getting so much of positive vibrations from your story... Was your breast cancer triple negative or er pr positive, coz I want to know if this oral medication will work for my sis too please?? Thank you. God bless u..

    Harry

  • I had positive. That's what the letrozole is for. Thank You for your kind words. Your sis is lucky to have you Take care and blessings to you both. Be positive when she can't

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