I hope you are all safe and well. Just had my telephone appointment with hospital and basically they have offered me the chance to stop Ibrance for the time being (and continue with Letrozole) until the pandemic settles down. I have been on Ibrance since June 18.
They said it could be a good opportunity to see if I can continue being stable without it. The drug company now lets you get back on it if you need to later on. So far this has never been allowed. So I have decided to give it a try, it is a bit risky but I won't be considered extremely vulnerable for coronavirus. Has anybody else stopped Ibrance due to Covid-19?
All my Zometa treatments and CT scan have been postponed. They have also offered Lupron every 3 months instead of Zoladex every month. Has anybody had Lupron before? Are side effects similar to Zoladex?
Many thanks,
Eva xx
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So interesting, thanks for posting. I phoned my hospital to ask if I could come off ibrance for a bit while, as you say, it's the thing that makes us 'extremely clinically vulnerable' but doctor (not someone I know) didn't recommend. I have a scan in a week so maybe I'll ask again, depending on the results. Also interested in zoladex alternative - every time I have the injection at my doctor's surgery they ask me how long I expect to be on it and seem surprised when I say years, until I might have hit menopause... Makes me aware of how expensive it must be for the practice. Gill x
Hi Eva ! That is good to know ...that we can now go back on it !
Is it the drug company or N.I.C.E. that’s allowing that to happen now ? Where are you in UK ? ... I’m in Yorkshire .
I asked my onc the same thing in a phone call , a couple of weeks ago , and I was advised to stay on it at that time for that reason ( just after a fourth stable ct scan ) .
I am in the middle of cycle 29 ...so I am now wondering , will I be advised otherwise in the next 2 weeks , before I start my 30th cycle ? ( however I am now starting to have bloods ‘in community ‘ at my local GP practice , and I am due to start having my Ibrance/Letrozole delivered to my home by the hospital’s pharmacy this next cycle , ( during pandemic) so I will not be seeing my onc or chemo nurses) .
I am not able to comment on the Zometa ,or Lupron ( as not on this ...I’m 56 )
It is best we dont go to our NHS hospitals for the time being , so it is the right decision , I believe . Take care ! x
You could ask at your next appointment. I think it is the actual drug company that is allowing it.
I have been thinking of stopping Ibrance for a while as I have been stable for almost 2 years but I knew they would scare me out of it, especially if we could not get back to it. So I see this as an opportunity to at least try. Wouldn't it be fantastic if we could stay stable without it? 🙏🙏🙏
At least we can get back to it if it does not work out.
Yes maybe a good time to try it ! I started Ibrance Dec 2017. Which part of U.K. are you in ?
I normally see my onc every 4 months ( so probably not till August now) and just had a ct scan in March ( last one was 8 months ago- end July ) and I had the stable results from my onc via phone . My only appointments in next few months are the monthly ones with the phlebotomy nurse at my local GP practice ...and I have just ordered a special chemical snood to wear for those appointments ! x 💟
I am in Leeds. I see my onc every two months and have yearly CT scans, I was due this April but has been cancelled. I think if you are stable or have been stable for a while it is a good time to try. You can speak to your onc and see what they think.
Thanks for the info ! I will wait and see what they do in 2 weeks time when I am due an ibrance delivery from the hospital , as I don’t want to be bothering them at the present time , as I only spoke with them two weeks ago . I am self isolating with my husband and daughter in a small village in West Yorkshire and only go out for a country bike ride close to home . Fortunately with the great weather we are getting , we are able to sit out in the garden . Hope you’re keeping busy and keeping safe too ! x
I live in Calverley, a small village on the outskirts of Leeds, so we can still go to the woods and our local park (keeping 2m distance!) so we are coping ok at the moment.
I bought a hybrid e-bike a few weeks ago ( after reading about them on this site ! ) and it is hilly where we live as we are in the foothills of the Pennines , so it enables me now to get out in the countryside nearby . But my husband struggles to keep up with me , when hill climbing !! 😂 But think it is good for my bones/ hips ! x
We are in a small village in West Yorkshire ... not far from Holmfirth ( if you ever watched Last of the summer wine ?!) but it’s very hilly so the e- bike has come in handy ! My home is minutes from the countryside so not much traffic here and great when self isolating for rides ! But we have father in law in NI and my husbands cousins / relatives are over there . Hope you get out for some lovely walks this Easter ! x
I would like to ask you both - because you are my Ibrance heroes.. does your doctor check or monitor your Tumor Markers from blood tests? I am starting round 8 and my tumors are shrinking and I feel great but this number is still sky high and climbed this month. Thanks - sorry to highjack post
It’s not a problem as we are all on here to help each other in any way we can ... there is no such thing as hijacking on this site !
My tumour markers have never changed ...so they are not a reliable indicator for me ... ( My onc said that I have ‘marker negative disease’ )My onc goes on ct scans (which are less frequent now ), and on how I feel . Luckily I have no pain , ( my mets were bone related) and that is a main thing to look out for , if there is any change . Take care and hope you do well on this protocol . We all know that at some stage we will all have to change protocols , but hope this is not for some time yet ! Hope you get continued good results from Ibrance protocol ! x
Yes, they check CA153 every month. They went down within normal level (below 30) by the third month or so of starting treatment and have stayed normal since 🙏. In my case they have been realiable so I know if they go up it is not good news. I get very anxious every month about those numbers!
I believe diet, exercise, supplements etc. help us to stay healthy.
Mine have always been between 18-22 and have never changed , so I don’t have them checked that often these days , usually just before an onc appointment . I had them checked every month for the first couple of years .
Please could you say which supplements you are taking? I’ve only been on Ibrance since last August but first scan in January was positive with healing in bones and no new lesions so my (private) onc has suggested a two month ‘holiday’ while this virus is at its worse (hopefully!) I can only tolerate 75mg as neutrophils always badly hit and have a 3 week in 2 week off protocol in any case. It will be very interesting to see how my bloods respond.
Glad you had a good first scan. That is always encouraging. I am taking a high dose of Vitamin D, Amla (Vitamin C), mushrooms and Reishi Spore Oil. All of these can help to strengthen your immune system and could help with both cancer and Covid 19.
I also take High strength Pure Fish Oil, Glucosamine Sulphate and Floradix occassionally. My herbalist from Haven also has me on an concoction including Gotu Kola to give me energy.
Infrared sauna is great for pain and anxiety. Exercise and diet are very important as well to support your immune system. I have been doing PE with Joe everyday 😊!
I am on a mainly plant-based diet (no sugar, no dairy, no processed foods etc). I have about 500- 800ml vegetable juice every day. I still have oily fish and organic eggs a few times per week. Organic chicken occasionally.
You can try to include a few supplements and modify your diet if necessary and see how your bloods respond.
Further to my previous email, just to say that tumor markers are not reliable for everyone. It is a good sign that your tumours are shrinking and you feel good! Xx
I wish you well as you take a break from ibrance and zometa.
As to whether you will remain stable, I can’t say. I can only speak for myself when I say that I have been stable without ever being on ibrance since I started treatment in May 2018. So I sincerely hope that the same will be true for you as well.
I’m still having my zoladex injection next Tuesday and my zometa infusion the following Friday. I double checked with the hospital and I am not on the list for cancellations. I suspect chemotherapy patients may have had their treatment suspended.
So glad you have been doing so well on Letrozole only. It seems that your bone mets were minimal so it is great you have not needed Ibrance so far! It is a bit scary to stop Ibrance but I am glad it was them who suggested it and not me. xx
Yes, I can see what you mean. The fact that your medical team suggested the break from ibrance is good. They know the science behind the drugs, so it is good you can trust them. My bone metastases comprise of two small spots on my thoracic and lumbar spine. I take Adcal D3, and a vitamin D +K2 spray each day, as well as eating lots of green leafy vegetables each day. So I am hoping that all helps keep my bones strong. I hope everything works out for you.
Thanks for all the info. I didn't know about Zoladex being effective for 3 months. I will ask them next week. Regarding Ibrance it was my onc who suggested stopping it so I suppose they can't say later on that I can't get back on it! I could have it in writing just in case. My neutrophils have been ok on 125mg so far so I don't think the decision was based on that.
I am on Ibrance , Letrozole, daily. Once a month get Lupron and Xygevia . The side effects I have experienced is major fatigue, and achy . When I first had them I felt terrible like I had the flu because of the aches. Now it’s just fatigue. Good luck and blessings to you
Thanks. Glad somebody else here is having Lupron . They said I could have Lupron this month as a one off instead of Zoladex so I don't have to go to hospital for 3 months.
I’ve been on Letrozole and Ibrance since September 2019 and have had monthly Zometa injections. In December my scans showed “stability”, for which I was very grateful.
Mid-March I finished my ibrance cycle and my oncology nurse told me the oncologist felt, given Covid-19, it was in my interest to boost my immune system and go off ibrance until further notice. Letrozole doesn’t affect our immunity so I’ll continue that. Monthly injections will go to three monthly and CT, MRI etc have been postponed until this summer.
So we sound in the same place. As Letrozole is the first line of treatment I feel good being only on it and hope that whenever scans are done, there will be no progression.
May I ask where you’re living? I’ve not heard of any rule about not being able to continue with Ibrance if you take a break.
I was glad to read you said this had been discontinued.
I’m afraid I’m not familiar with Lupron or Zoladex. What do you take these for?
It seems that we are in the same boat😊. I am happy we have the chance to give Ibrance a break and hopefully still be stable 🙏.
I am based in the UK. My onc mentioned that had it not been for these unprecedented times the drug company would not have allowed us to re-start treatment once it is stopped.
I always thought we could not stop and come back to it for medical reasons. This makes me think why they have not allowed this before 🤔? Why there are no studies to check if people can have a break from it? Why there are no studies to see if people can be stable after it? I really hope it is because it is a new drug and not because there are vested interests!
Zoladex and Lupron are to shut down your ovaries if you are still premenopausal.
Hope things go well for you. Please keep us posted. Let's hope this pandemic ends up soon and we all can go back to normality.
I would be in the same boat as you and Kathleen. I've been on Letrozole, Ibrance & Lupron (every 3 months), Zometa ( one time) since August 2019. I live in the US, 52 yrs old and I have been known NED since Feb 2020. HR+ with bone mets. I have been off Ibrance since March 1st due to COVID-19 per my Oncologist. I have been on/off (more off) Ibrance since I started, so I'm not convinced that Ibrance NEEDS to be taken. I will stay off Ibrance till this is over or maybe until after my next scans in August. I will continue the Lupron injection until I have my ovaries removed in September. I do take CBD/low THC daily (my oncologist does know). I don't really follow any special diet - and I take supplements here/there. Nothing steady. The only side effect I wish I could improve is the "arthritis" I have in my feet, hips & shoulders. One day at a time........
I would agree with you that it’s strange the pharmaceutical company is now allowing you to stop and then go back to ibrance again. No idea what that’s about.
I’m fairly new to us going it, however, so maybe just haven’t heard about that regulation in this country. The one I take is a product of Pfizer and is absurdly expensive. Happily my insurance kicks in so I don’t pay the full amount but it’s still a lot.
I hope things go well for you too. I have no idea when I’ll be tested for anything - even blood tests - as all my treatment has been suspended for the time being.
I just had a visit with my oncologist and nothing was mentioned about stopping my ibrance. I am having a bone scan and ct scan soon so we will see what happens. I am a bit anxious about them as I have a sore back again.
Fingers crossed all will go well with your scans. We’re all anxious when about to have them. Please keep us informed!
Big hugs. Kathleen
Am I right this is a UK focused discussion? I ask because I’ve not heard of suspending Ibrance in the US. I’m wondering why, other than unceasing your WBC while covid is flaring, or bad side effects, one would stop.
My CA 15 dropped from almost 400 when I was diagnosed early in June 2018 to 30 now. I’ve had a good experience with it after a little adjustment.
Aside from Covid and WBC, why would I consider suspending? What is the medical reasoning. Please? Thanks.
It would be interesting to hear from the ladies in the US and what they have been advised to do , if taking Ibrance , during the pandemic . I have been taking it for well over two years now and tolerating 125mg to date . I am stable and my bloods and tumour markers have always been ‘ within normal range ‘ for Ibrance . I did ask my onc in the U.K. about whether an ibrance break , during the pandemic , would be beneficial only a couple of weeks ago , and she advised me to stay on it as no guarantees I could go back on it , if I came off it . But I was also told by the oncology sister that protocols were changing daily ...so things could change . I am self isolating with my family and taking extra care , however , if we did get the virus , our immune systems ( while on Ibrance) may not be able to fight off the virus as we are immunocompromised . Difficult decisions in testing times ! Take care ! x
My oncologist wants me to have the best possible chance of fighting COVID-19 should I get it. I’m on 100 mg, reduced from 125mg, as my neutrophils were very low. That’s her reasoning but may not be the same for others even if you too have low wbcs monthly.
I’ve found via this site that all oncologists treat us differently.
Eva is the only other person I’ve heard from who has also been told to stop the iBrance during the pandemic.
I don’t think there is another reason for suspending this drug, assuming you tolerate it well, but I’m not medically trained. It seems to work very well with Letrozole which is the first line of treatment in post menopausal women.
I had my phone appointment yesterday with my oncologist, she said my PET scan from March 26 was stable, no active cancer. She didn't say anything to me regarding stopping the Ibrance. I will get my labs done on April 21, and see what she says about it then. I have been on Ibrance and letrozole since May 2017. Just went to 100 mg in January. This is definitely stressful times. Take care everyone and stay safe.
Glad you had some good news at this difficult time ... you may not feel like celebrating at the present time , but give your loved ones a big hug ! 🤗 Take care ! x
I agree with many that you can follow the guidance of your oncologist. A good relationship with your onc and trust in them is essential. First and foremost make certain you can go back on Ibrance at a later time. For me, I have been on Ibrance coming up on 4 years in May. There is no way I would suspend it other than for a week or two when my WBC has been extremely low. If it is working, and it is... I want it to keep working . I have had to change the drug it is paired with and am on my third one.... Faslodex injections with the Ibrance. That is enough change for me. Prior to this change to Faslodex there was progression. For now, I know i am one of those with a weakened immune system and am 65. I will stay away from people. I haven't even been able to see a new grandchild born during all of this. But for me I would rather stay on my current regiment of drugs and get back to a normal way of life whenever the restrictions are lifted. I don't want to add more worry about my cancer progressing. But bottom line--- each person has to stay informed and do what they feel comfortable with. Blessings to all -- stay safe and healthy !!!!
I stopped I dance for a week bc I kept getting sick, not Coronavirus, didn’t get tested tho. I’m supposed to go back on Saturday but I’m kinda liking not being on it. Seems risky but I’m not sure. Ive been on Falsodex instead of letrozal for almost 3 years plus Leupron and xgeva.
Side effects of Leupron is the same as menopause. It’s medically induced menopause so hot flashes, irritable, etc. I take Effexor to handle the side effects.
I’m curious to see what your other doctor recommends.
I have been off Ibrance for 3 months but still on Letrozole with good results so far. I take lots of supplements and mostly GI diet. My oncologist said I can always go back on Ibrance if need to.
That is very encouraging Mimigram! I also take lots of supplements and follow a low glycemic, plant based diet. I think this is what my onc is thinking that I can always get back on it if need to xx
Yes I’m uk based and advised to come off Ibrance till June. I asked if the protocol was suspended for starting it again and my oncologist said yes I’d be fine to start again.
I’ve just had a stable scan three weeks ago with bone mets. Relieved at only have to fight one fire at a time!
Here in the uk ibrance is only available as a first line treatment we cannot even change to faslodex from letrozole but for the next few months they are letting ladies have a break due to the virus and resume when safe c
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