SHARE Metastatic Breast Cancer
1,525 members832 posts

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!!!

88 Replies
oldestnewest

That is incredible news, very happy for you!

3 likes
Reply

So jhappy

2 likes
Reply

Thanks for sharing. How was the mets in Apr?

1 like
Reply

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.

1 like
Reply

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

4 likes
Reply

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

4 likes
Reply

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.

7 likes
Reply

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.

1 like
Reply

Those strains and cramps are awful!!!

Reply

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.

4 likes
Reply

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

Reply

Text me 973-207-9990 pamela

Reply

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!

2 likes
Reply

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.

2 likes
Reply

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

Reply

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

Reply

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

3 likes
Reply

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.

Reply

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!

1 like
Reply

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!

12 likes
Reply

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

Reply

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

9 likes
Reply

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.

Reply

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.

Reply

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

7 likes
Reply

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.

8 likes
Reply

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.

6 likes
Reply

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

Reply

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.

5 likes
Reply

Hello how are you? Are you still NED?

Reply

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

5 likes
Reply

Great news, Susan!

Reply

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.

1 like
Reply

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

Reply

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

4 likes
Reply

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!!!!

2 likes
Reply

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.

6 likes
Reply

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.

3 likes
Reply

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!!!! 😘😘🙏🏻🙏🏻

4 likes
Reply

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.

2 likes
Reply

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.

1 like
Reply

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

Reply

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

I give God all the glory on this one.

11 likes
Reply

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

2 likes
Reply

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.

Reply

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.

3 likes
Reply

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.

4 likes
Reply

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

1 like
Reply

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!

Reply

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

1 like
Reply

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

Lisa

1 like
Reply

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

1 like
Reply

Amazing!!! ❤️

1 like
Reply

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?

Reply

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.

3 likes
Reply

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.

2 likes
Reply

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....

Reply

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.

Reply

Forgot to ask.. What were your side effects?

Reply

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

Reply

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

2 likes
Reply

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.

1 like
Reply

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

1 like
Reply

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

1 like
Reply

I hope you have good results and minimal side effects.

Reply

OK Susan,

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

1 like
Reply

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..

Reply

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!!

2 likes
Reply

Thanks Susan!

Reply

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.

1 like
Reply

Awesome!!!

Reply

Way to go!

Reply

How are you doing now Susan?

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

Kim

Reply

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?

Reply

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.

Reply

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..

1 like
Reply

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.

Reply

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..

Reply

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!

Reply

Thanks for sharing im taking both drugs myself...

Reply

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?

Reply

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

1 like
Reply

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

Reply

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!!!

1 like
Reply

Are you still ned?

Reply

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.

Reply

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

Reply

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.

Reply

You may also like...