NED after 5 months on Ibrance and Let... - SHARE Metastatic ...

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NED after 5 months on Ibrance and Letrozole

I had my first PET scan last week since starting Ibrance and Letrozole in April 2017. There is no evidence of cancer in my body! I was diagnosed in April with breast cancer and bone mets. I think I am still in shock! The meds are working for now, go back in 4 months for another PET scan. I don't think anyone really knows how long these drugs will work because Ibrance is a very new drug. Cancer does give me a different perspective on life. I am living for a cure!!!

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That is incredible news, very happy for you!

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So jhappy

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Thanks for sharing. How was the mets in Apr?

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April was my first ever scan. It showed "faint" spots on multiple bones. Humerus, F1, sacrum, sternum. Bone biopsy of sacrum confirmed breast cancer mets.

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Best wishes. Hope this lasts for as long as possible. Stay strong. What about your muscle and bone pains? Hope you're coping well with Letrozole. If not let me know because after trial and error I have at last managed to find ways to reduce my pain

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Please share ways you use to decrease the pain. For me right now glucosamine with MSm works most days

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Letrozole damages the ligaments and causes strains and cramps to muscles. So we need to deal with each issue separately. I have found that combining calcium, vit D, vit K2 and magnesium do the trick. I also thoroughly massage the painful ligaments with Ibuprofen max strength gel for a good 5minutes. Soaking in a hot bath tub also helps with cramps. So I alternate between all three depending on the source of pain. I also make sure to move around every 15-20 minutes to keep muscles fro. Getting stiff. I'll start acupuncture soon and if you want to I'll keep you posted.

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Thank you! I take most of this along with fish oil. The glucosamine chondroitin and MSm combo works for me. Without it there is a lot of pain.

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Those strains and cramps are awful!!!

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My favorite for bone and muscle pain are cannabis bath Bombs in the tub. They look like regular bath bombs and if you're in a legal state you'll find them easily.

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I am interested in the bath bombs. Sounds wonderful! I can't get them in AL though.

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Text me 973-207-9990 pamela

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I live in Ontario Canada I am not sure where others live or where anyone's stance is on this issue but... I take medical marijuana oil for pain . It is not the kind that gives you a high it is for pain as I take it for fibromyalgia now . It does Aldo help with anxiety. Just a thought!

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Thanks. I have not had any pain from the bone mets. I would not have ever known that I had anything wrong if the breast cancer had not been found. So far I am doing well on the letrozole. It does cause hot flashes about 3-4 times/day.

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How long have you been in it? Thanks for sharing!

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I was diagnosed in April 2017. On meds 6 months.

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So funny...I just said the same thing yesterday. If I didn't know, I wouldn't know. Feeling great!

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Jan, I love to hear that you are feeling great. It does put a different perspective on life for me. I enjoy everyday of feeling good.

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Same here but when you get the news it's so horrible, like am I supposed to start figuring out end of life stuff or remain positive and move forward? I've chosen positive attitude and hope! Also, the book by Mary Elizabeth Williams, 'A Series if Catastrophes & Miracles ' is amazing!

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Can you share how you're managing your pain? I'll listen to any suggestions - presently on opioids etc.

Thank you in advance . Wishing you many good days!

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That is wonderful! And bodes well for you! The bc specialist onc that I saw for a second opinion after initial staging, when my local onc had started me on Letrozole, told me that when Letrozole works, it often works for years. And I went on to get almost 5 years from it! THose of us with a positive response, like you are having, to initial hormonal treatment, often do well. I hope you will be living life for a long long long time! And celebrate this!

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What did you do after 5 years? If it worked, why didn't you stop?

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I had a bit of progression and switched to Faslodex, which I have now been on for over 9 years.

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I just started ibrance and Faslodex last month. How do you feel, after 9 years? I haven’t experienced any adverse side affects... but I recently felt a very sharp pain in my hip. Wondering if this is related to injections.

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Is falsodex the only treatment your taking? Have you ever went meds before? I enjoy reading your post about how good your doing with only bone mets.

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Greetings: Susan 1953/WAAAAAAAAAAAAAAARRIOR. This is wonderful news. My fingers are dancing on my key board. I am celebrating with you. Where is the party. First an foremost I give thanks to God and pray to hear many more testimonies from our other warriors out there. Please don't worry about the, what ifs of the future, just fully embrace and enjoy this time of celebration! ! ! AAAAAAAAAAAAAAAAAAAAMEN

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Hi Overcomer,

I posted above that I found out a week ago that I was NED. Thanks so much for your other message to me.

I sent out an email to everyone I knew giving God all the Glory and listing a lot of verses about healing.

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Praise and prayer does work. God has truly blessed you. C-E-L-E-B-R-A-T-E good times, with the crashing of the cymbals,the blowing of the horn. Move your feet clap your hands and, dance around. I am smiling and my fingers are dancing on the keyboard in celebration with you. Amen Amen, and YESSSSSSSSSSSSSSSSS Amen I pray to hear more NED testimonies. Warriors there is a time to fight, a time to pray, and a time to praise.

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If you are NED, what are you going to do now?

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I'm going to keep thanking God that I can focus back on my 4 1/2 year old son!

See my post below for the rest.

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Hello how are you? Are you still NED?

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Thanks for celebrating with me!!! The party is in Alabama. I do pray for everyone to be NED and stay that way!!!!

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Great news, Susan!

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I am happy for you! That is my goal too. I have had low counts on 3 cycles which has slowed my treatment. Im hopeful I can get my counts up with nutrition and supplements. I am curious if you have neuropathy from letrazole. I have tingling in my feet.

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I also have tingling in my feet, leg cramps at night.

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So happy to hear that! I think ibrance and letrozole are miracle drugs for myself also.

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That's great news!!! Keep going. I am on Ibrance and faslodex injections. Wondering the difference between faslodex and letrozole, will ask my doctor. Good luck and all of us keep the faith!!!!

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Susan, Congrats...I am (Liver/Spine) also NED as of Aug 17,2017. The PET Scan results are sooooo shocking and amazing. On Aug 17th ALL my bIood work was normal. I am currently on my 6th round of Ibrance/Letrozole and my September blood work is all over the board. A couple of week before my September appointment I started slowing down and sleeping more than 4 hours became impossible. They started me on B12 injections so hoping that does the trick. So nice to have a fellow NED Ibrance/letrozole SUPERSTAR. Any hair thinning? I had none when I started Ibrance this was because of my previous treatment (The Red Devil)...but happy to report about 1/2 inch of growth.

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Congrats to you too Lisa! I was also shocked by the results and I even asked my Dr. "How can that be?" He showed me the comparison in April and September's PET scans and it is really amazing. I have just started my 6th round today so we are together in this journey. No hair thinning but this is my first treatment for breast cancer. I have had less energy at bedtime but I just go to bed earlier and try to get 8 hours sleep. That is great your hair is growing back on Ibrance. Stay in touch! My blood work was good and he said I do not have to have it drawn every week anymore.

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Hi Susan!! So so happy for you!!! I've decided to go on a plant based diet, no sugar, no processed foods. I only get my blood work done once a month. This past month my blood work looked real good. I'm not sleeping well though. I'm tired but can't get to sleep. Congratulations! 🎈 wishing you continued NED!!!! 😘😘🙏🏻🙏🏻

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Theresac1, Susan

I am following a Whole 30 plan for eating. It seams to give me the most energy. What time of the day are you taking Ibrance? I'm also having sleeping difficulties. I can get to sleep but cant stay asleep. 4 hours is the best I can do. Trying some sleeping scripts...but I really don't want to take any more meds.

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I take Ibrance in the morning after breakfast. Trying to walk everyday 10,000 steps. Exhausted by 9-10 at night. I used to be the energizer bunny but not anymore. I am eating healthy and drinking vegetable and fruit juices made by a local juicer.

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I just went on a Plant based diet also no dairy,meat, processed foods or sugar, white flour. It takes a while to get some go to recipes but after watching the movie Forks over Knives and what the Health on Netflix I am a convert. It should be recommended watching for everyone who has cancer!!!

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Hello lisa,, I to am NEDS!! How are?

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I am also NED after 7 months on Ibrance and Letrozole (and Lupron).

I give God all the glory on this one.

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Congrats to you on NED also!!! I just hope it continues to work on us for a long time. Stay in touch!

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Susan,

Not sure from your message, but it sounds like you are staying on the chemo pills. Is that correct? If so, why did your doctor suggest you stay on them? ...or are you doing maintenance drugs....or planning on nothing at all?

I am doing nothing this month except next month I will take Xgeva again for my bone to heal more.

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Sweetk, I am still on Ibrance and letrozole. There was no discussion about not continuing treatment. My understanding is I continue this treatment as long as it is working and not effecting bloodwork adversely. I don't understand why you would be taken off of the meds if they are working.

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Hi Susan,

I didn't want to take over your posting...since it was your wonderful news! So, I didn't write much above. So, I'll answer your thought. Please let me know if it is OK to share more detail on your posting?? I hope this is ok?

In response to your question and Sheung's below...

Ibrance is a wonderful drug when you are fighting cancer.

However, it is most definitely toxic to our bodies. Letrozole also has a long list of side effects. These drugs fight cancer, but they also fight your body's ability to be healthy.

So, yes in my oncologist's opinion, when a patient is NED, they definitely don't need to be on Ibrance and letrozole.

My oncologist actually wanted me to go on Tamoxifen because it is a "maintenance" drug to keep the estrogen at bay.

She and all the specialists in her network wouldn't have suggested I stay on Ibrance. Her exact thought was that since Ibrance didn't stop working....we could come back to it any anytime (and that was postive). I asked if that would concern the insurance company. She said no because many patients (other patients) need a break from the "toxicity" of Ibrance (and other cancer drugs).

However, I asked the Lord to heal me from my cancer. I prayed, and hundreds of people prayed for me (even little kids of friends prayed for me at bedtime). I have shared my good news with everyone that the Lord has heard my request.

Psalms 30:2 “Oh Lord my God, I called to you for help and you healed me”

So, I told the doctor I did not want to take the Tamoxifen (for this last month - since NED). I want to let the Lord shine through this example of what he did. I have to for all those who have supported me in their faith.

I also have severe disc degenerative disease in my back, with a major nerve being pinched and 3 discs out of place. That was on top of the bone mets. The time off of these drugs in my system has confirmed that all my pain is coming from my back and not from chemo drugs, letrozole, or bone mets.

I have a blood test coming up this next week to check my cancer markers. Not everyone's cancer markers follow their cancer progression, but mine did thankfully. So, I'm going to take it day by day with the Lord at my side. He's done so much in my life that I will trust him. If the cancer markers go up, the doctor said she wants me to take Tamoxifen.

I am so THANKFUL for every NED story I hear on this site!!!

I praise God!! I pray that everyone is healed of cancer forever.

My heart goes out to everyone on this site that is in pain over cancer!!

Blessings to All,

Sweeetk

P.S. I grew up in a conservative church that did not spend a lot of extra time on healing verses or teachings. But when I received my diagnosis and was told that I had an average of 4 years to live; I got busy studying in depth what other Christians had done after their stage IV terminal diagnosis. That was a very long journey since last Christmas! But I learned a lot. I have a 4 1/2 year old son. I would give my life for him...but I don't want to leave him. As a Christian believer...I had to call out and finally tell people what I was going through. That was very hard. I also had to take my faith to a whole new level; beyond just my belief in God and the fact that he saved us...but a belief that he would heal me, and has healed me now. I believe that he will work for good in this situation.

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Greetings: Sister/Overcomer/ Sweetk continue to stay in faith, and give God all the praise, no matter what the situation. I pray that God will surround you with angels ,doctors, and instrumental people who, will promote complete healing/restoration in your body/temple. I pray you will see every wonderfully important milestones in your son's life .Believe it , receive it , God will achieve it! Amen

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Hello sweetk! I love your post. I'm also ned and I'm not taking ibrance just monthly shots. I prayed and many others prayed for me. God has healed my body and I'm going to continue to pray to my god. Bless everyone!

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God bless you. I too am a Christian and know that our God is a great big God and I have asked for healing too from breast cancer in my spine . I have a nurse that prays with me and fills me with the Holy Spirit. Heavenly Father hear our cries for a cure for cancer. Thank you that you have healed so many onthis site. We praise and glorify your name Amen!

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Hello sweeetk

You mean you have stopped ibrance right after NED? Was it suggested by your oncologist?

Since ibrance is quite harmful for the blood work, I also have concern to stay on it. Any experience to share?

Thanks

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I am NED and my oncologist said he will keep me on Ibrance 125 as long as we can keep my bloodwork stable.

Lisa

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Congratulations Susan 1953! What wonderful news for you. We all rejoice in all the good news. Enjoy.

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Amazing!!! ❤️

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Congratulations! That is so good to know. My doctor wants me on ibrance. Will you keep taking it, or will you now switch to something natural like mistletoe? Did you do chemo or radiation?

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Thank you. I am continuing to take Ibrance and letrozole. The side effects are very minimal for me so far. I have hot flashes 3-4 times/day and several at night. I sleep with a fan blowing on me which really helps. I had no chemo or radiation because my initial diagnosis was Stage 4 with bone mets. I have no pain or discomfort. I will have another PET scan in January to make sure the medications continue to work.

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Cancer Tutor has some great protocols for stage four. Not all of them have harsh drugs. I'm new to stage four but I don't understand why, if you get to NED, you don't move to something natural and healing and monitor it.... Then you could go back to Big Pharma if necessary? I thought the cancer gets resistant anyway and then we have to change.

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This is my curiosity as well, is there never an "exit strategy" for an Ibrance patient with NED? My Dr says when something new, or better comes along, then it will be advisable to go off Ibrance, and use it. I am grateful for it, as it has been a big help, but I dont want to be on it for the rest of my life....

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Susan,

I forgot to say that my "original" diagnosis was also Stage IV.

I'm sure you were as shocked as I was. I'm in constant hot flashes too.

I took Lupron for 8+ months as well to put me in early menopause.

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Forgot to ask.. What were your side effects?

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My side effects were hard for me. But I had a lot going on at one time with my health.

The chemo put me in bed by the 12th of the 21 days. I took the maximum amount of Ibrance and it socked everything out of me. It was fighting cancer in my body. So, I did feel a war going on in my body each month as my white blood cell came down each month. Then I would just need to wait until my WBC came back up to take it again. I was ok for the first week on Ibrance....but then it started to bring me down bad by the last day. Then I was thrilled to be off for 12 days or so.

The letrozole had terrible side effects as well in my jointss (adding to my pain).

The Lupron of course brought the hot sweats on and this has had the biggest impact on my life. So then you are in pain with sweat coming down all over your neck and head while you are feeling fatigued....

God Bless

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That is great news, an encouragement to hear. I am probably am going to start on Ibrance within a week.

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Thank you, Susie. Ibrance has been a miracle drug for me. I am hopeful that it will continue to work for a long time. Good luck to you and let me know if you have any questions about my first 6 months on Ibrance.

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No questions right now. I am on Femera, start Ibrance October 9. I hope and pray it works well. I have heard positive things.

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That’s great to know. I started that combo a week ago.

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I hope you have good results and minimal side effects.

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OK Susan,

I started my own post :) ....quite a long one.

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I’m on my second month of Ibrance and Femara, May I ask if you take both pills together after food? I was told to take after dinner. Currently I take Femara before dinner and ibrance after dinner, not sure if I’m doing it right.. My tumour is still as hard as rock, hope you can share more on your diet and routine that you do daily..

Also can share if okay to drink coffee, eat red meat? I have carrot juice before I go for morning walk, vegetable juice before lunch and another vegetable juice before I go for walk before my dinner.

My blood count is low too so I’m thinking of eating red meat to help boost my red blood cells, Guess nothing much I can do with the white blood and platelets counts, let me know if anyone has any suggestions..

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Red meat is a real no for cancer patients. Get your doctor to prescribe a supplement. If you have Netflix I highly recommend you watch the documentary Forks over Knives and the other one What the Health. Both are excellent. I wish I could make them required watching for anyone with cancer. It opened my eyes up. There is nothing in the movie about factory farming or anything so you don’t have to be afraid you will see farm animals in destress. But you doefinitely shouldn’t eat meat!!

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I started out taking both pills in the morning after breakfast. I have recently started taking Ibrance after supper or bedtime. I thought it might make a difference with fatigue. I cannot tell a difference. I still get tired by 9 PM either way. I can live with that. I am eating red meat in moderation and lots of fruit and veggies. Taking turmeric and vitamin C supplements. I am trying not to eat much sugar but the holidays have been a challenge! I walk everyday and try to get 10,000 steps/day. Prayers for all of us in 2018!!

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Thanks Susan!

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I instinctively want to split the time frame of taking the pills. I take the Femera at night before bed as it says it can make you dizzy--maybe it helps me sleep---not sure. I am starting Ibrance tomorrow and will take after breakfast. Also, as a note, I took Femera, letrozole, 10 years ago while in my 50's and the hot flashes drove me crazy and I stopped taking it after 5 years (the time frame appropriate at that time) but I began taking it again with this recent spread after 20 years about 6 weeks ago and it does not seem to bother me nearly as much as it did when younger. So, maybe the photoflashes are just not so much at an older age. That makes a lot of sense to me.

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Awesome!!!

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Way to go!

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How are you doing now Susan?

I was NED as well, but showing cancer activity now. So, I'm on Tamoxifen now.

Kim

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Hello Kim,

I have a scan In a few weeks so I will know more then. Praying for NED but I will fight on just like you if it shows activity. How are you doing on Tamoxifen?

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I don't know. I've only been on Tamoxifen for a short time now.

I was on "nothing" for 4 months. I wanted to be NED with nothing.

Then when we saw activity, I agreed to go on Tam.

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Hi Susan, may I ask is ibrance your first line defence? no surgery or chemo and you get into NED? Do you just continue with ibrance and scan every 3 or 4 months? Sorry for so many questions as my onc gives me ibrance and told me not to do any surgery or chemo for now, and I’m abit worried that Ibrance will not work and I should just go for the big guns..

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Hi Athena, I had my very first cancer diagnosis in April 2017. It was already MBC in my bones. I had a normal 3D mammogram less than 5 months prior. Ibrance and letrozole were started in April also. I have had 2 PET scans, Sept 2017 and Feb 2018, and both have showed no cancer NED. I have had no chemo treatments.

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May I also ask how big is the primary tumour? It is amazing that ibrance could shrink it to none in such short period. Do you take xgeva shots for the bone mets and Lucrin shots to stop estrogen? Thanks so much for all your replies..

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Hi, I know this post is older but I wanted to share this. I have mbc to spine and rt lung. I said no IV Chemo right off, well I changed my mind. Went on Doxil for 6 months, something I tolerated better than the Ibrance. The Ibrance for me was stronger than the IV Chemo. I just might not be able to take it. It lowered my wbc to dangerously low count. I know this happens but I’m off it for 3 weeks or until blood work is better. So I think Ibrance is very good and strong chemo that will work. I did take it only 21 days, just make sure your blood work is done regularly. Hope your doing great!

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Thanks for sharing im taking both drugs myself...

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What two drugs are you taking?

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Hi Susan and everyone who is taking ibrance and a hormone drug like letrozoke or faslodex. My question to all of you with the bone mets is, were you all also taking xgevia ? Or were the other two drugs alone enough to make the cancer tomor a shrink?

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I am on Ibrance and letrozole only so far ( 6 months ) for bone mets to pelvis , but told it would be reviewed after my scan , as to whether I need bisphosphonates ( if develop further bone sites ) . So far my tumour markers have remained stable at 20-22 and I have no bone pain . Fingers crossed for my scan in September ! And for you too x

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That’s fantastic news! I just started Letrozole and Ibrance a few weeks ago. Time will tell.

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I have now been on Ibrance and Letrozole 16 months and tolerating it well. The side effects are tolerable ( increased fatique, hot flashes, joint pain). I have friends that have been on these drugs over 3 years and are doing great. Live for the cure!!!

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Are you still ned?

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I Have been NED since my first scan 1 year ago. My next scan is in late September. I have friends that have been on these 2 drugs for over 3 years and are NED. The 3 of us are all active and travel.

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Are still taking ibrance? My doc took me off ibrance. I had a scan 2 weeks ago and I'm still ned n bones are healing

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I am still on Ibrance and letrozole. My Dr. plans to keep me on it as long as I am NED and not having bad side effects or blood work.

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Susan - I am new to this group and felt very positive about everything you have written. I hope you are still on here. I was diagnosed in med Sept this year but didnt start Letrozole till Nov 1. I was petrified and got a 2nd opinion as my dr was pushing chemo thinking I was a stage 3 -he saw I was reluctant. I completed my first cycle of Ibrance last week so we will see. It is stage four with flakes of met to bone right femur and in some nodes-no where else. This is my first line of treatment--they are wanting to do zomyeta infusion--no bone scan done but had a bone density test that is normal. I am feeling worse in my bones since starting the letrozole-weaker with pain--I guess its both of the meds causing it--night sweats but also hot/cold during the day. I hope my results will be good except my tumor marker went up from beginning 70 to 151 but it was me that delayed treatment. I hope that your are still well and if so maybe we can hear from you.

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Eliactida1955, welcome. I have the same diagnosis as you and Susan. I reached out to her a couple of weeks ago and thank god she is still doing well. I was diagnosed feb 2018 and am on my 10th round of Ibrance /letrozole/Zometa. Everything looks a lot better now, was tired and had some bone pain the first couple of months, then it went away. I am pain free now. You will do fine on this combo, hang I in there. You have found a great group of ladies here, that have so much knowledge and are so inspiring. This is how I get through my day. How old are you? I am 53.

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Hello-thanks for responding . I’m 63 and found out around September 20th 2018. I was so devastated and was afraid to take the letrozole just so petrified. I couldn’t find anyone like me that was de novo stage 4 with mets to bone-right femur -just flakes . I tried to reach for support to various groups here but I found no one like me. No support so I prayed hard and took the pill on November 1 then started the Ibrance a couple of weeks later. So far there has been pain in the bones that I didn’t have before and weakness. The night sweats when I sleep have been difficult and the hot/cold flashes during the day just come and go but I know it should get better. I am supossed to go for a zyometa infusion on the 15th-scared of that too. I am so glad I have found this site and I am reading that everyone is doing well-I hope I do well too. Tomorrow I start my second cycle of Ibrance but we are watching wbc levels I am praying for all of us Keeping positive and living life.

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Hi Eliactida,

It is normal to feel devastated and scared at what is going on in your life. It can take a while for everything to sink in too. What I like about this site is that we can connect with other ladies who are going through similar experiences, even if our breast cancer is not exactly the same.

Letrazole can cause pain in the joints and bones, so that could explain your symptoms. I have been having three-monthly Zometa infusions since June, and I manage really well. I actually feel better after I have had an infusion with no side effects from it, so hopefully it will be the same for you too. What I like is how the atmosphere is so relaxed in the cancer unit. The radio is on playing music the moment you walk in, we have comfortable recliner chairs to sit in and there is a lady who comes round offering us tea or coffee while we are having treatment. I am going to have my infusions in a mobile cancer unit bus closer to home from now on so I don't have to keep travelling to hospital for infusions. I am looking forward to finding out what it is like. If I don't like it, I will go back to having infusions at the hospital.

Take care,

Sophie x

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This is great news..I hope for the best.

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Hello Eliactida, We are very much alike. I am 65 and have been on Ibrance and letrozole 20 months now. I have been NED since my first scan after starting meds. I remain very active traveling and helping with my 3 precious grandbabies. The only discomfort I have is some joint pain and hot flashes. I have a tower fan beside my bed that helps at night. My husband is my rock and has been with me everyday on this journey. I know that I am lucky and very blessed to have a support system.

If you would like to talk, I will message you my phone #. I understand the fear and anxiety you are having over your diagnosis. Noone wants to have our diagnosis but you are not alone. I hope you have minimal side effects and stay positive. Live for the cure!!

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That would be great to have someone to talk to. I started the second cycle today 125 mg--worried because the last dose was 100 mg. My wbc had went down to 4 from 4.4 and now after a week it is 4.1. I am hoping that my treatment goes as well as yours--I am so glad it seems we might have been some what alike when diagnosed--I have pain in my joints--stiffness and need to be more active--those hot/cold flashes and night sweats that i hope will go away. It would be nice to talk and I am so glad i have found this site with all these strong ladies that are positive--there is hope....

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Hello ! I wouldn’t worry about wbc being 4. as they are within the required range for Ibrance . I am very similar to yourself with de novo stage 4 , with mets to the bones (pelvis). I have been on ibrance 125mg / Letrozole for a year now (13th cycle) tolerating it with not too bad side effects, and ‘NED’ seen at my ct scan in October this year (my bone mets in 2 areas of pelvis have sealed over) . So hang in there , the side effects do lessen as months go by , pace yourself if you get tired at certain times of the day/cycle, try to get some exercise ( I dog walk daily and do stretches) and just keep moving , as that helps with any stiffening of joints . Also drink lots of water as will get dehydrated quickly and eat a healthier balanced diet . I haven’t really changed my diet as I am already vegetarian , but not vegan. I haven’t yet tried any supplements so can’t advise on those . But lots of ladies giving good advice from their experiences on here, but remember everyone is different . Wishing you well with your new combo ! x

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Thanks-I feel so tired in the afternoon especially--my legs are so weak so pushing myself to exercise and to drink more water. Im getting a zometa infusion tommorrow and kinda scared of that with the side effects. I am so glad I can talk to everyone here because just starting all of this. Im hanging in there.

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Hope the infusion goes ok today ! Do take naps in the afternoons if you get tired ... in the early months I would dog walk am and do a few stretches and rest pm ... my body would tell me if I needed to rest or drink more . Pace yourself in those early months and take ibuprofen etc for pains ...it does get easier as months go by ! I still get occasional hot flushes so just strip off for a few minutes in the home when it happens ! But generally feeling good and I wish the same for you . Hang in there ! X

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That is so awesome !!!! Gives all of us hope ♥️

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Hi..Thank you for sharing this. Ive been searching for positive posts about these drugs. Do you mind if I ask if you had surgery to remove the cancer from your breasts...candy xx

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Hello! Are you on Ibrance /Letrozole? I had a right mastectomy after ductal bc was diagnosed just over a year ago , and as 16 out of 18 lymph nodes were affected, I had an axillary clearance on the right side and a right reconstruction all at the same time . It was discovered after ct and bone scans that I had bone mets to pelvis and I started on this combo a year ago . It has gone well for me so far , with a few side effects , but tolerating and there was no evidence of active disease at my scan in October . So my onc agreed to me having a breast reduction (on my left non-affected side to rebalance my new smaller implant ) 3 weeks ago , while on my off week of Ibrance . I just had the dressings off a few days ago and all going well and looking good , so that’s a “positive” out of this awful situation ! I now have less pressure from the weight on my shoulders and ‘pert’ breasts... or as my daughter (just home from uni ) said ,”new tits for Xmas! “ That made me laugh and made my day ! 😂

I do hope it goes well for you too . x

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Thank you. I was diagnosed with everything at once. The oncologist some of them anyway thing surgery isn’t worth It and won’t extend life. Yet I’ve found a different oncologist that believes removing the primary cancer can extend life and gives your body a better chance of fighting the cancer. I think it’s something I will do. Just knowing it’s there and caused this makes me want it out. I’m glad things are going well for you. It’s goid to hear positive stories when you had such frightening news ❤️

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I am very new in this group. Just diagnosed with MBC and my oncologist started on me on Letrozole, Ibrance and Zometa this week. Thanks for all the positive feed backs on this chemo-therapy combo for MBC. To God be the glory!!!!!! We will all overcome this journey.

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Hi Susan Veronica here diagnosed in April 2016 with breast cancer ..right breast cancer had tumor removed ..30 rounds off radiation .10 months with nasty infection..finally cleared up and had the breast finally closed off ..thought thst was the end off it all buf got hit in July 2028 with mbc ..lungs and spine .ribs hips .everywhere spots showed up ..but organs were good for now and brain was good also..on my 6 round off 125 mg ibrance and lertroizle buft in 5 months my blood counts ts dropped for the 3rd time ..i will see my oncologist on the 20th for more blood work. Hope my levels r back up. As when i am off i am very tired and fatigue ..as no radiation can do much for my bones as it everywhere ..i am having very bad nite and day time sweats ..its crazy..lots off joint pains and its getting worst ..not sure what they will do for my pain ..

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Wonderful news. This gives us all a shot of hope. And Hope is one of the anti cancer ingredients!!

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So amazing! I've been reluctant to find a spot online for support but so glad I stumbled upon this one. I'm honored to be part of this group. I was diagnosed in Oct 2018, told I would have to do 5 rounds of chemo, surgery and radiation. Then had a CAT scan and everything changed! Stage IV. Already went to liver & bones. Started immediately on ibrance and letrozole. First scan in January everything had shrunk by half or more! Is it possible to beat this? Up until this point no symptoms, no side effects. Thought I was perfectly healthy. And I know I'm blessed beyond measure. Is it really possible to become NED?

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Amazing!! I hope I get the same result soon!

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Hello to everyone. I have been reading all of your posts and so glad that everyone is sharing and getting help from people that have already been where you are now.

I am 25 months NED on Ibrance/letrozole. I have recently changed to MD Anderson and have been very impressed with their care. My new oncologist has added Zometa infusions every 3 months for bone strength.

You do need to be your own advocate. My recent experience changing to a different facility was interesting. I really wanted to keep my local oncologist and be treated at MDA. He told me yesterday that I really did not need to come to him anymore if I was going to be treated elsewhere. I only let them do my bloodwork and he was not happy with me. Oh well!

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So glad you doing so well Susan and for sharing. It gives us gals on the same or similar treatments inspiration. So sorry you had that experience with your former oncologist but I know as a long time nurse some docs can get their knickers in a knot pretty easily when they are questioned. Oh well move on and do what's best for yourself. Take care.

Sandra

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Glad to hear you are still doing well Susan ! You say your new onc has added Zometa every 3 months ...is this the first time on bone strengtheners for you ? and have they said why you need them now ? I am on same combo 18 months , but not yet on any bone strengtheners, but my onc is keeping all options open x

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I have been getting Zometa infusions every 3 months since diagnosis. Generally speaking it depends on the amount of bone mets you have and the amount of pain you have associated with it as to when or if you receive a form of a bisphosphonate . I was in extreme amounts of pain when I was diagnosed and will be on the bone strengthener indefinitely.

Sandra

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Thanks for your reply Sandra. My onc has not yet put me on bone strengtheners as my bone disease has always been very low volume and well maintained/controlled , but she is keeping all options open for the future . I did ask for a baseline bone density scan (Dexa) , which she is arranging for me (my mum who is in her mid 80’s ,but doesn’t have cancer , has preventative bone density scans /meds )and my onc has said she may start me on oral Bondronat if there is a risk of osteoporosis . I hope the pain you had when diagnosed is now much better x

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Definitely much better thank you. It took awhile but honestly I at the moment feel like a new woman and mostly pain is controlled with extra strength Tylenol. If it had stayed like it was when I was first diagnosed I couldn't go forward and wouldn't have. I have never felt like that in my entire life. Thank you for caring.

Sandra

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