How long until Ibrance makes you feel better?

[Toomanyquestions]

I read somewhere that Ibrance could make you NED in 4 months. I guess that depends how bad you are. I’m bones, lungs and liver ER+. My onc says I’ll be able to be ‘normal’ but I’m still in bed most of the day. I’m on my first full cycle after having to stop the previous x3. Not sure if I can believe I’ll be normal again.

[nstonerocks]

I think the key word here is “could.” It isn’t a standard, and I have been on it almost 4 years with the goal of no progression, as opposed to NED. I have had two scans with some progression, but the latest showed no progression and some regression. Mets to lungs. I think the anti hormonal faslodex made the big difference, though seems like the Ibrance has helped to keep my disease fairly quiet. Do you feel any better? When are scans scheduled? Are you on anything else? Normal is another tricky word. Getting out of bed and being able to engage in a meaningful life would be a wonderful “normal.” However, be prepared that these meds do have side effects, and most of us have to reconfigure our lives to include more rest, less stress, lots of water, etc to make it work. Here’s wishing you the results you need to get out of bed and get back to enjoying life a lot more. Use this time to think about priorities and what you want to do and achieve when the meds kick in. Ask your doctor about other meds that might complement the Ibrance. Keep us posted. It can be done as so many of us here are a testimony to the many treatment options. Sending a hug and healing thoughts to you. 💕

[Toomanyquestions in reply to nstonerocks]

Thank you so much x

[Toomanyquestions in reply to nstonerocks]

Hi again, sorry I couldn’t reply earlier, I’ve been prescribed Valium to get through the first week on the antidepressants - I feel like a drug addict! So have you been on first line treatment for 4 yrs? I’m guessing you are in the states as you’ve had Ibrance for longer there. They say 2yrs here and at the back of my mind I wonder if this is how long the NHS will fund it for. I do feel better , the Letrozole was working for me without the Ibrance I think as I started to get better. Also I’m on Zolodex. I’ve had two major operations on my legs so 2 anaesthetics which sent me totally loopy. Do you just have bone mets? Sorry if I’ve asked you that before. Thanks again for your reply X

[Toomanyquestions in reply to nstonerocks]

PS Do you have any tips for getting to 4yrs? Do you have a particular diet or juice? Do you mind if I ask your age? Do you work out? X

[Garden-Lady in reply to Toomanyquestions]

Blue Zones plant based diet

[mariootsi]

I think all of our results are so individual. I wish you quick recovery and to be able to get out of bed and do the best you can! The side effects slow us down for sure. Rest and take it slow! Love, Marianne

[Toomanyquestions in reply to mariootsi]

Yes I think that might be the lesson for me, I’ve never rested or taken it easy I guess that’s why I’m struggling so much. The fatigue is so annoying because I can’t sleep. Hopefully that will improve when I can walk properly. I keep thinking they wouldn’t have done the surgery if they didn’t think I had a few years in me but then it’s so hard to trust that they are telling the truth about a normal life when I’m this debilitated. That’s why this forum is so brilliant - there’s a lady on here who goes to the gym 3 times a week - if I could get to that! I don’t know if it’s a realistic goal and I don’t want to set myself up for disappointment. I’m only 42 and I used to run all the time. At the moment I feel about 90! X

[mariootsi in reply to Toomanyquestions]

I hear you! I was always active, traveling, working and running all day! It's a tough transition to where we are now! Just know as time goes it gets better and we adapt! Don't have a choice! Love and hugs Marianne

[Red71]

My doctor told me I’d hit my new normal by the end of the summer. This was April. I made it by September but that did not include NED. But I had radiation and PT and massages, and tried to increase my activity level everyday after I started moving around. You won’t be able to just hop out of bed and be normal. It takes work and knowing your body...when to push, when to rest, and when to ask for help from friends and doctors. Good luck in getting there...it’s worth the journey!

[Toomanyquestions in reply to Red71]

Hi Red, that’s really encouraging, can I ask how old you are? Do you have bone mets? What sort of exercise did your PT do with you? Are we allowed massage? Yes I must force even a small walk every day. I was in bed all weekend which was not good mentally. My sister in law just forced a walk on me in the freezing cold but I do feel better now X

[Red71 in reply to Toomanyquestions]

I’m 71, but I don’t act my age! I have numerous bone mets including t 10 and 12 compression fractures. The compression factors were giving me a huge amount of pain and were treated with radiation which helped tremendously. I still have pain from other sites but they are treated with pain meds because they won’t ever improve and the pain will never go away. I can deal with that because I can still do the things I want. We have scheduled a Viking River tour of the Danube for this fall. My doctor encouraged massage once I was up and moving. I had a pain in my hip that made me feel like my right leg wouldn’t hold my weight and made climbing the stairs difficult. My massage therapist found a muscle that was really tight and worked on it and it was like a miracle cure after two treatments. Being inactive makes your muscles stick together and quit sliding over each other the way they are supposed to. She has worked on that too. She is a lot more than just spa massage! PT worked on restrengthening my legs and balance. I didn’t go long but it was a great help.

I don’t understand why you are staying in bed. Has your doc recommended it or are you just that exhausted? If you are able to walk I would recommend that you find a very comfortable chair or recliner that can be in a place where your family is and where you can be part of the action, doing the small things you are capable of. I started off very slow, getting out of my chair every two hours to do something, fold a few clothes, clean one countertop, just small things. But staying in bed, away from the people in your life will lead to more loss of strength and more depression. I read books to my grandchildren while I was still chair bound because that was the only thing I was capable of. Now I’m babysitting them again. In the beginning you have to push yourself but I was determined that I didn’t want people waiting on me. I’m just not the type, having been a nurse in a previous life. I’m more the one that waits on other people! You can do this by very slow movement forward. Don’t look at the change from one day to the next but one week to the next. Please feel free to private message me if you are feeling down. Elaine.

[Francesca10 in reply to Red71]

Thank you for your post. It gives me hope and encouragement as I have bone Mets also; many in t section- two were radiated but didn’t resolve.

[Toomanyquestions]

Thank you Sandra, that is a great reply. Would you mind me asking how old you are? I’m 42 with extensive bone mets, I’m really hoping for NED but I’m beginning to realise that I’m actually very weak. Building myself up after 3 months in bed has been so hard. I can walk without crutches now and my CA15-3 has dropped from approx 780 to 280 since December with not much Ibrance so that is positive. I’m just so tired, I even find it difficult to sit at the table to eat. I’m eating quite a restricted diet which I guess probably isn’t helping the energy, no refined grains so I’m low on carbs, high on protein. Do you follow a diet? Are you in the states? X

[Francesca10 in reply to Toomanyquestions]

I also have bone Mets and had two rib fractures

The replies you got are wonderful honest and warm. I am grateful for those replies also. I am on faslodex over a year and on my fourth cycle of ibrance 75mg. I couldn’t tolerate ibrance 125. My ca markets rise every month by 5; i dont know if ibrance is working or not. I also get xygeva every month. Pushing past the fatigue every day as I still work full time; I am a RN. The mental part for me is the hardest

Of all as I worked in oncology for six years. That is not helping me at all.

Give yourself time, rest and gentleness. I am glad I found this site- we all need support and prayers from each other. Hugs

[Toomanyquestions in reply to Francesca10]

Hi Francesca, thanks for your reply, yes this is a positive place, I’ve probably been the most negative person on here for the past few days! I’ve had so much amazing advice and support and I think it’s only been just over a week. I have heard it takes 4 months to do too much but that might be a myth. Are you doing a particular diet or taking supplements? I’m mainly eating avocados, chicken, eggs and fish and vegetables also juicing. Limiting carbs and no sugar. Not sure if there’s a point to it but I’m paranoid about what I eat. X

[Francesca10 in reply to Toomanyquestions]

No not following anything really. I have cut down on pasta which is difficult because I love it. I try to eat as healthy as possible and most days I do but if I have an urge for chocolate I will eat it😄hugs

[Red71 in reply to Toomanyquestions]

Sugar is something that many people avoid but my doctor says that all cells need sugar so if you restrict too much they will take it from somewhere else in your body. I try to eat a well rounded diet with lots of protein, vegetables and fruit but because of radiation restricting my esophagus, I find that pasta and rice are much easier to eat so I eat them as well. While you are healing, eat whatever tastes good. It takes calories to heal and regain that strength! When you are back up to what your normal is going to be, then you can think about your diet.

[Francesca10 in reply to Red71]

Couldn’t agree more. Healing takes so much energy💕

[Hidden]

I have been in Ibrance a year. My scans have stayed the same. No progression but it hasn’t cleared up any. I am chronically fatigued. I don’t know if it is the Ibrance or hydromorphone cont or the combo but I barely function. I would love to feel normal again.

[Francesca10 in reply to Hidden]

I don’t know what “normal” is anymore. My new normal is constant tiredness and it’s probably the cancer and the treatments and the worries. I still work and can’t imagine not working- it helps keep me focused on someone else and have gratitude at times. All I really do is just work and come home- if I have energy left I will go see my baby grandson who is 2 and makes me forget everything!

[Francesca10]

Thank you Sandra🙏🏻

[nstonerocks]

I am 65, diagnosed MBC right off July 2014. I had 12 or 13 rounds abraxane, which really cleared up my lungs -- not entirely, but worked really well. I don't have bone mets. I had the lump removed from my breast and went for radiation treatments. Then started on letrozole December 2014. Summer 2015 some progression, started on Ibrance. Summer 2018 some progression, started on Faslodex, stayed on Ibrance, and I am stable with some regression. I wish I could tell you there's a formula. I would like to say I exercise (I don't -- yet), avoid sugar (I try to, but I cave). I do juice, but lately not as much as I should (which ideally would be daily). I highly recommend juicing greens, as I feel much more energetic when I do. However, lately I'm a bit nauseous, and it is hard to guzzle kale juice on an upset stomach. If you do juice, try to keep it 3 veggies to one fruit. I don't eat much meat. If I feel low or upset stomach, I do crave a burger (I know, sounds weird), and try to eat organic. I cut out lots of dairy (used to guzzle milk), but still enjoy eggs once a week. Occasionally cheese. Try to incorporate vegetables and some fruit daily. Grains like brown rice, quinoa. I take CBD oil, chaga mushroom tincture, a probiotic. I just got ginger pills and dandelion elixir. I try to take multivitamins and omega oils. It is a lot of supplements, so I don't fit all of them in daily, but the chaga is good for immune system, and I am one of the only ones not to get the flu where I work. I meditate, study Buddhism, and would love to do yoga, but since I work every day, it's hard to fit it in. I am very tired when I get home. I nap a lot on weekends. Try to deal with stress with therapy. I am on an antidepressant and when I am circling the bowl (getting anxious), take a xanax. Less than a handful of times a month, sometimes none. I have travelled a lot since being diagnosed. I was afraid to fly and dealt with that chemically. Now it doesn't take much to fly back and forth to Europe. I have seen amazing places and had fantastic adventures. Planning my trips really saved my sanity over the years. You need to look forward. I'm lucky to have a supportive (sometimes needs a reminder..) husband and love my dog and 2 cats. I was overweight before MBC and still am, but really trying to cut out junk (can't have cookies or cake in the house) and lose weight. If it were a perfect universe, I would follow all of Kris Carr's advice (check out her website, she also has a Stage 4 Cancer). Try to drink a lot of water. Half your body weight in ounces. I am here in the States, so maybe the protocol is different in the UK, but I will be on Ibrance until it is clear it isn't working. The median efficacy is 2.8 years, but everyone is different. I find it hard to live with all the uncertainty, and that's where the coping mechanisms kick in -- meditation, travel, work, etc. I don't know if any of this helps you, but you will find a routine to optimize your physical and mental well being. I cannot believe it is almost 5 years. Going for the next 5 and the next 5 after that!

[Purple60 in reply to nstonerocks]

Hi nstonerocks. Is there a particular juicer that you recommend? Thanks

[nstonerocks in reply to Purple60]

I have read masticating juicers are best. Low speed, preserve more vitamins and enzymes. But they can cost hudreds. I have an Omega masticating juicer. The Breville fountain juicer is also highly recommended and goes for 100 to 200us. The slower the speed, the better.

[Francesca10 in reply to nstonerocks]

Thanks so much for this post. It is honest and empowering.

[NPmary]

Suggest to your doc lowering the dose, lowered doses seem to be just as effective and can decrease side effects. You shouldn't have to be in bed All the time if you do then your doc should be helping you more or should refer you to someone who can (palliative care doc). If your doc doesn't become more helpful - get a 2cd opinion don't be afraid tow switch docs.

[Survivornow]

I just had my first full round of Ibrance. Rough 3 weeks as my pain returned. Once I stopped the 21 day dosage, my pain began to back off. So not sure if it was the Ibrance stirring things up!

I meet with my Oncologist on Thursday to discuss my reaction to the drugs. I did notice that within 30 minutes of taking the Ibrance, I was suddenly exhausted. So I'll switch to nighttime dosing. Hope that helps!

[Eliactida1955]

I have been on Ibrance since November and just now I am starting to feel better. I am still weak sometimes-have my days and really I don’t think we will ever be the same as before the diagnosis. I think my bones are the worse-they hurt and my legs are weak at times. You will feel better soon-think positive ❤️ We are all trying our best and wish for the best-one day at a time and alive!!!!!

[Francesca10]

Ibrance has many side effects and though I trust my oncologist I had to tell him my nosebleeds were from the combo. I read through the trial studies and felt relieved when I saw symptoms I have-chronic fatigue, stomatitis, upset stomach, gas etc. I accept this with the hop it is working but won’t know until next pet scan. Quality of life is important and my doc understood this so I am on 75 mg of ibrance.

Thank you all for being here😘

[TuliS]

First off YOU must be Positive, think GOOD then it will be GOOD

[Dflur]

What is NED?