ON IBRANCE, DANSUMAB & LETROZOLE - SHARE Metastatic ...

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ON IBRANCE, DANSUMAB & LETROZOLE

Jodiec40
Jodiec40

I live in UK and i am on Ibrance & Dansumab. I was due to go tomorrow to get my next cycle of Ibrance & dansumab injection. Had a phone call today that they are stopping this treatment for 1 month due to corona virus has anybody else been told this.

88 Replies
oldestnewest

What ???? No way. This is scary for me

I’m in UK and have appointment next Wednesday for bloods denosumab injection etc...not cancelled so far

I’m in Nottingham

Barb xx

Me to Barb. I’m in Liverpool.

Will you be getting more than one months Ibrance ? x

Hidden
Hidden

In UK, they give you your Ibrance medication? It does not come via mail or a pharmacy? (I live in US).

girlsptz
girlsptz
in reply to Hidden

Anna Marie normally my oncologist gives me my medications at each appointment but in these circumstances as long as your oncologist requests it the oncology pharmacy team will mail out in my case my Ibrance/Letrozole. Unprecedented circumstances call for unique measures.

Sandra

Scandia68
Scandia68
in reply to girlsptz

Hi Sandra. How will you get your bloods done before each cycle?

girlsptz
girlsptz
in reply to Scandia68

Good morning. My labs have been very stable and I'm one of the lucky ones that after 22 months on Ibrance 125 mg do not experience low neutrophils etc so I may decide not to go for labs for the next couple of months and my oncologist is fine with that. If I do go though I have a really good setup where I live. I posted about it before so will post my response below. Good luck to everyone in these difficult times.

Sandra

healthunlocked.com/share-me...

Hidden
Hidden
in reply to girlsptz

Interesting how different countries have different protocols for the same medication and condition.

In US, even when I was on Ibrance and went to my cancer center, it was NEVER given to me by my onco. I do not think ANY of the major hospitals and or cancer centers in US are given their medications from their onco. At the best, the onco calls them into the specialty pharmacy and they are delivered to me via federal express by a specialty pharmacy. It usually comes with refills and I will get a reminder via email from the pharamcy from my next rx of Ibrance was due, just click refill and then they mailed out to me. Now, I am on Verzenio but still sent my email reminder. As a matter of fact, it was delivered today and my doorman signed for it.

Only my injections are given to me at the center. Even with my pain specialist, she sends all my rxs to a pharmacy in my area. I never get any medication (not even primary doctor) handed to me.

LynnFish
LynnFish
in reply to Hidden

I'm in the U.S. and got my Ibrance at the doc's office for the first few months. Then my insurance (Aetna) started to insist that I do mail order. I successfully fought them off for a while since I did not trust some pharmacy warehouse/distribution center in the Florida panhandle (I remember reading some nightmare stories a few years back) plus worried about temperatures, e.g., in delivery trucks. Well I ultimately lost that battle and now do mail order...So it's the insurance companies that force us to do mail order from their warehouses due to cost-savings, no doubt..

Hidden
Hidden
in reply to LynnFish

Ever since I started at that cancer center, no meds were given to patients. I prefer them via email. i never think about temperature or any of that. I am still here 2 and and a 1/2 years later. I never know or think out markers. I am like a blank slate when it comes to the cancer. I just need to know after CT scans (which I get every three months) when it spread or not and if it, what next.

Works for me. I never read any books at all or any diets for cancer patients (even with the nutritionist who was about 25) I told her don't even suggest vegetables bc not happening at my age. She gave me papers to write down what I eat every day. LOL...I dont even know where the papers are but will now blame it on the virus.

Since my onco referred to me to palliative care bc of my pain and my onco does not prescribe any pain meds, just the pain specialist, I had to go also to the psychiatrist and nutritionist.

The dumb psychiatrist must have asked me three times do I ever have thoughts of hurting myself. He also seemed disappointed that I said No (I was scared they would cart me off to an insane asylum.)

When he asked a third time, I said how many times are you going to ask me that. I said why would thoughts about hurting myself when I have stage iv cancer that is taking care of that itself. He look dumbfounded and then said well, then do you think we need to continue sessions and I said no. I dont believe in psychiatrists, as a whole, bc you don't know me. I understand you went to school and got your license but unless you know me or have lived through what I have, I do not see where you can be of any help and I am certainly not going on any anti-depressants so that was my first and last appt. with him. My pain specialist though laughed when i told her. She said he needs to ask those questions and I said Okay, I get that but three times. I felt I disappointed him by not saying I wanted to hurt myself.

LynnFish
LynnFish
in reply to Hidden

Aamkearns! I really do admire your approach to life! It seems you are fully "you", every day! :) It's what makes the world go 'round! :)

Hidden
Hidden
in reply to LynnFish

We all have low bumps in our lives. I feel I had more than my share since birth. I have been through much worse than being diagnosed with cancer so for me this is not the worst thing that ever happened to me. My fiancee getting killed a few months before we were to get married was and I knew if I got through that, nothing else in life could knock me down.

8576
8576
in reply to Hidden

Yes, those bumps. Some are bloody awful. Had a few myself, starting at age 4. I thinknow, the bumps made me stronger. Maybe. I don't dwell on problems just want to fix them. I enjoy reading your remarks in this group. Simple approach. I also don't buy or read books about cancer. I am living it! I love this group though. Don't know why I am telling you all this. Your reactions to the nutrishonist and psychiatrist was funny. It is very difficult to find a good psychiatrist but I think you are right you don't need one!

Cheers, June S.

Teeco
Teeco
in reply to LynnFish

I live in the Province of Ontario (Canada) and my Ibrance is given to me directly by the Pharmacy in the Cancer Center. I'm so very grateful and give thanks every day for these blessings.

I live in Ontario Canada also , If you don’t go to the cancer clinic every month you can have your ibrance sent by courier. Mine is arranged with shoppers drug mart specialty pharmacy. Just an FYI if you need it . Shoppers calls each month to arrange for delivery day .

Many thanks. I'm aware of that but I happen to be in the area of the hospital on the days that I need to get it. Wishing you the best!

Barbteeth
Barbteeth
in reply to Hidden

Yes I get it given to me at monthly appointment

Barb xx

Barb is it because it’s a controlled drug that they won’t mail it to us.?Also, the Chemo Dept go on our blood results before giving any of the medication.

I’m not sure about mailing drugs...is it a controlled drug?

Yes have to have bloods checked for calcium levels before you can have denosumab injection so you’d have to go to the hospital for that

Fgs people aren’t dying in the streets...if everywhere is kept clean and people are sensible then personality I don’t see a problem...my dental practice is still open and the nurses are disinfecting every hour...door handles banisters light switches etc...no magazines In waiting area and not allowing anyone to attend if they have symptoms or just come back from a danger country

My poor daughter who is head of chemistry at a private school is so upset about closures and the effect on her A level students

Rant over!

Barb xx

You are right Barb. If precautions are taken then no problem. My Dentist is still open also and the nurses always clean down after each patient normally anyway. My GP surgery is closed. Fair enough as Phone consultations are a good idea. They introduced that before the virus. I feel for your daughter and her pupils. My Brothers grandchildren are really upset about the closures. He has 2 x 11 year olds and l x 16 year old. He has an autistic Grandson that crawls the walls normally let alone with a school closure. Bless him, he is 11 with the mind of a 3 year old. He doesn’t speak either. He has excellent parents though and a lovely little sister. I was told Ibrance was a controlled drug but who knows? I get told all sorts of things. Your daughter hasn’t had much time to put a plan together has she? I live opposite a primary/junior school and I am going to miss watching the babes in the playground having fun. Let’s hope people pull together and my husband can get the much wanted milk we want and a box of cereal. He has tried 5 times.........so far. We won’t starve. I urge everyone who may read this please put something in the food bank box at the supermarket. Take care Barb. Here’s to next Wednesday🙏🏼. Let me know how you get on.

Thank you for your kind words...my daughters friend is a doctor in London and she’s advised Vanessa ( my daughter) to stay away from me for two weeks in case she’s contacted the virus before the school closures...she’s now upset that she can’t see me tomorrow on Mothering Sunday but is paranoid about passing it on to me!

I did go up to the stables today to see my horses but tried to keep a safe distance from people...I’ve also been to a few small shops for bits of food but I’m trying to be sensible...very difficult though

Barb xx

It’s so nice to know you have seen the horses. It’s good for your wellbeing. I can understand your daughters upset but it’s better to be safe. I can’t see my 92 year old Mum either but I’m hoping that I can make a video call to her via my brothers phone. It really is upsetting that we have to curtail the way we live. I’m just hoping I can still go,to our allotment. It’s near planting out time. Take care.

Yes horse therapy works for me...I just groomed him a bit ( and a few cuddles...my horses often have lipstick on their noses!!) and it was just good to get away from the routine

I wanted to start swimming again now my wounds have healed but all leisure centres have closed yesterday together with restaurants pubs etc so I can’t....it’s annoying because it was helping my pain and getting me fit....of course the health of the nation is more important!...I’m naughty complaining

However there were groups of people hanging about today and I saw two cafes with people in them...I despair...they’re just taking no notice of the PM and spreading the virus around just because they don’t feel ill....grrrr

Barb xx

Scandia68
Scandia68
in reply to Barbteeth

Why are the cafes open??

Barbteeth
Barbteeth
in reply to Scandia68

No idea...I thought maybe they were just selling bread/pastries etc as they make their own stuff but there were people sat at tables inside

What’s the point

Barb xx

So selfish aren’t they Barb. I just don’t understand the ignorance of people. I’m due to have my blood taken tomorrow ready for my Ibrance and Denosumab jab Wednesday. I walking to the hospital with hubby. It’s around a 30/40 minute walk. Wish I could be convinced that public are staying off the streets. I will take the necessary precautions but......always the but......will others. So pleased you managed to get out to the horses. Bet they look cute with the lipstick. Hope it’s their colour. My stepdaughter has a tea shop. She is allowed to open for take away food. She has decided not to do that and do deliveries. At a distance of course. She also bakes so will be busy. Folks just won’t heed the warning and me, maybe from a selfish point of view, would like a complete lockdown. We live in an apartment in Liverpool City Centre and I am chomping at the bit (did I say that correct?) to get out to the allotment. We shall see what happens under hospital advice. Take care and talk soon x Cheryl

Hi there

Oh I do hope you get to go to your allotment...that will be so therapeutic....just being out in nature raises your spirits

We have closed the practice apart from emergencies...extractions and prescriptions mainly...the rules have changed in a day!

All the best

Barb xx

Will let you know what they say. I expect my dental surgery will close as well. My dentist has been wonderful through my extraction nightmare. I see her every two weeks (since last July). She never charges me either. I actually look forward to going. Let’s hope we can all enjoy some outdoor life in the next 12 weeks at least.

Let’s keep smiling

Cheryl

Got to the allotment Barb. It was wonderful and we picked up an award and gift voucher. I have put a picture on here but goodness knows where. Anyway, I was pleased to hear Michael Gove say allotment holders are allowed to go to their plots as it’s excersise and for food we have grown. Our allotments are gated and locked so no happy wanderers. My Chemo Dept rang tonight to say attend appointment as normal. I’m so pleased we had a good day in the sun today. It’s lifted me ready for tomorrow. Watch this space. Take care and hope you have seen the horses today.

Hidden
Hidden
in reply to Flowerfairies2

Ibrance 75 mg is not a controlled substance under the Controlled Substances Act (CSA). This is in US. I was able to get refills and did it through their online refill page. I would be surprised if it was a controlled substance in UK.

In US most drugs that are addictive such as opiate medication are considered "controlled substances." My pain specialist is NOT allowed by law to give me any refills and must see me every single time to send over a new rx for my percocets.

Xanax is also a controlled substance. Any drugs that people also may use for recreational drugs are labeled controlled substances. US thought has gotten to the point of changing the laws so often and doctors who prescribe are tracked so that doctors would prefer have a patient to go through pain rather than prescribe them any opiate meds, even dentists now. They do not want the govt. looking over their shoulder. Even my small damn pharmacy would make comments if they felt I was getting too many opiates.

But now that I have pain specialist and it says on it CHRONIC PAIN - CANCER, they keep their snide comments to themselves.

Flowerfairies2
Flowerfairies2
in reply to Hidden

That’s reassuring. Thanks.

Hidden
Hidden
in reply to Barbteeth

UK is certainly different in the way they operate from US cancer centers. Interesting. I tell my onco all the time. She loves to hear the differences.

Teddielottie
Teddielottie
in reply to Hidden

I’m in the U.K. and I am usually given my next month’s supply of Ibrance and Letrozole by the onc nurse ( via the hospitals in-house pharmacy ) after she has checked my bloods . But whether this may change in the current climate , I’m not sure ., but I would still have to have the monthly bloods done. x

Hi Jodie....Personally there is much literature to support now that Xgeva is equally as effective when given every 3 months as opposed to every month so I wouldn't worry about that myself. Can you not ask them to mail out your next month treatment of Ibrance? I know the oncology pharmacy here is mailing out all oral treatments to avoid people having to go to center to curb the spread.

Sandra

That’s crazy. I do not want to skip a month. That is scary. I have an iv treatment Tuesday. It’s still on so far. I would definitely call to get the Ibrance.

❤️

Stacy

Hidden
Hidden
in reply to Staysha

Maybe because Ibrance lowers the immune system, the UK cancer center decided better to skip a month with this virus going on. I was off Ibrance for almost four months due to being on antibiotics which did not work bc Ibrance (I hated that drug) messed up my immune system so much that I also have to have surgery which took four months recovery and I was off the Ibrance the whole time and it was still hard to heal from this surgery.

Hi

Yes been on this combo for 2years 3months did have my ibrance delivered last friday but my dansamab injection cancelled for a month .have a scan due on 8th april I hope it does not get cancelled xx they did say no teatment disruption for cancer patients but I'm not confident if week one we are seeing this .stay safe everyone xx mandy

Hi Jodie ! Could it be the injection they are putting off rather than the Ibrance?

I rang up my onc’s secretary this week and asked for my early April ct scan to be brought forward and have had it today ( I’m trying to avoid going into hospitals during the peak of the virus here in the U.K. ..in my town ,so far there are 3 cases reported , but it is getting bad in the south of the U.K. especially .

My follow up with my onc was already booked for late April and I asked if it could be via ‘virtual clinic’, which was agreed . A bit of a wait now , but I would rather not go into hospital for scans at peak virus time .

I go every 28 days to the oncology department , where I have my bloods done and my ibrance issued there too by the onc nurses . . This is scheduled for the end of March . I did ask the onc nurse if I could get two months supply of Ibrance with my end March bloods , in the current climate, but my onc passed on a message saying no that it would be cutting too many corners . She even asked the opinion of another senior onc , and he agreed with her . I was a bit surprised as I have had 28 cycles and tolerated 125mg to date and stable for a good while now . Is anyone else here getting more than one months supply of Ibrance but only off one set of monthly bloods at the present time ? I know there are strict regulations for this in the U.K. , but I thought , given the current crisis , they may be more flexible ? It would be interesting to see what others are doing ! Thanks x

Lesh often it is the physical pharmacy department that puts on these restrictions in our universal health systems not in the oncologist hands at all. Canada is the same and because of the cost of the Ibrance they restrict amount distributed at any one time for their budget controls. They cannot resort to trying to claim from insurance providers so are careful. I saw my oncologist at the beginning of the month and got my Ibrance for a month but to sorta over ride the system my oncologist on the same day called in a mail to me 2nd month of drugs. She trusts me to do or not my next blood work before I would start my next cycle. I told her I would decide if I will have blood work closer to the date and she said that was fine as I am stable lab wise. My next scans won't be until the end of May so hopefully we will have more stability with what is happening with virus by then. Canada has evocked extraordinary restrictions to flatten the curb.

Sandra

Thanks Sandra . I think the issue is more with the monthly bloods test than the supply of extra Ibrance in the current climate here , so I will ask for more supplies of Ibrance / Letrozole . I was also told l could have an Ibrance break if I wished , but not sure about this as I am tolerating ok . I assume this means being allowed to go back on it afterwards as I’m sure they wouldn’t suggest it otherwise ?! ( however I was talking via onc nurse , as my onc is in touch with them via email as currently at end of 14 day leave ) . In my town the virus hasn’t yet taken hold , but I know it is coming , so getting everything sorted while things appear normal in the hospital . London and the south of England have started to take more drastic measures with I’m sure more to come . x

Last few times I have been given 3 months supply of Palbo (Ibrance). I do still have to go monthly for bloods both for neutrophils and also calcium levels so I can have the Denosumab. It'll be postcode lottery again I'm under South Yorkshire.

Thanks , I am going to ask if I can have 3 months supply of Ibrance / Letrozole on my next bloods visit on 30 March just to shorten my monthly hospital visit in the current climate . I know they won’t let me have bloods less often than monthly ( even tho ‘ I have ,so far, been in normal range for wbc and neutrophils for 28 cycles at 125 mg ). It was my oncs decision and she then asked the other senior onc and they both agreed on monthly bloods continuing (which she joked they rarely agree on ! . .. ) x

Good luck. Let me know how you get on with the bloods cos I'm wondering what's going to happen about that. I don't want to be going to Hospital or GPs if I can avoid it but not sure how else we'll do it. Let me know what your guys say. Stay safe. x

Hidden
Hidden
in reply to Teddielottie

I live in NY in US. We have the distinction of having the largest number of people infected in the entire US. So far over 4,000 and God knows how many people have it but don't know yet. I cancelled my cancer appt. to have my injections and blood work but my onco called and said I really need to get my injections (So many cancer patients are cancelling, that they need the business of patients coming in). I was more scared of getting into the car service than going into the cancer center. They take your temperature before they let you in. So I will go plus I have pain specialist three days later. All are located in same place.

Teddielottie
Teddielottie
in reply to Hidden

Yes I have seen NY on the TV ...4000, that’s more than the whole of the U.K. , tho’ London has over 1200 recorded cases . My town / region in Yorkshire ( up North ! ) has 3 recorded cases ...we are thought to be 3 weeks behind London . So at present I am on ‘get prepared’ mode ! Take care when you are out ...and wear a scarf over your face in the taxi ! x

Hidden
Hidden
in reply to Teddielottie

I dont do the masks. I heard on TV that they said the masks unless they are very tight and no little loose parts are useless. But they stated that they found that the virus is NOT airborne. You cannot get it just from walking by somebody. It is via fluid. So if someone sneezes near a counter and even if they try to wash it down with a bounty or something if some of that sneeze fluid is left on the counter, well the next person is going to touch that counter and then if they touch their own face (on the average a person touches their face 23 times an hour subconsciously).

Really in US at least in my area of Brooklyn and my friends that live in NJ and Staten Island, people are doing gloves, NOBODY IS DOING MASKS.

Plus I am sure there many be many others in NY and your area who have the virus but are not even aware bc they are showing no symptoms.

For now the constant washing of hands (I live alone which makes it a bit easier and have no kids) and so far staying inside but I am starting to go insane.

I was stuck in my apt. (no balcony) for months bc of the surgery in which I was home in bed and in so much pain and then my spine and I could not walk even 1.2 block without my back giving me so much pain it would make me cry.

Finally, finally, I got a pain specialist who is not afraid to write me percocets (90 10 mg. 3 x a day plus one 3mg. of gabapentin plus some kind of cream).

I was so so excited I took a bus and went to a specialty Italian store where they have freshly made lasagna, eggplant rollatini, meatballs...I spent close to $200 and frozen much of it.

I was so excited now that the weather is turning nice and now this. I am stuck in the damn apt. again and my apt. is not large.

I have decided that I am going to become a split personality so that I have company. LOL

Teddielottie
Teddielottie
in reply to Hidden

So sorry that you have to endure this alone in your apt ... , let’s hope the three months ( or more?! ) goes quickly ... it’s all about survival for now ...but have a think about what you could do when it’s all over ! I’m glad you have all the lovely ladies on here to communicate with too. Take care ! x

Hi I am on the same medication as you in the UK and going for my new cycle today. I have not heard anything yet. I suppose they feel it’s safer for you to stay away from the hospital.

How did you get on today at the hospital ? x

Went in and had my treatment wearing a hideous asbestos filtered face mask 😷 P3 and glowes. Felt like an idiot but got my tablets and injection. I then went to the CT department and had a scan, still wearing the mask. I was the only one in protective gear, everyone else on the day unit had bare hands and no masks. I did wonder if I was overreacting 🙄

I'm in the UK too.

It sounds like they've pulled the nursing resources into the handling of coronovis patients or they have staff shortages due to health or child minding issues.

However, cancer will not wait a month if it's in the progression stage and if left to its own devices may need more resources down the line. Fine if you're in complete or partial remission (perhaps?)

I believe everything needs to be done to maintain continuity of treatment for those with cancer.

I would (and have) complained about waiting for a chemo slot to up just before the coronovis hit the UK. I succeeded in getting my message through and actions are being taken to address the matter.

If you feel you're cancer can wait a month fine otherwise raise awareness through the complaint system . Sometimes they can get you into another hospital.

Hope this helps xx

Hidden
Hidden
in reply to Andersl

I went several months without taking Ibrance after only three months bc of an infection that got out of hand bc the Ibrance killed my immune system. Had to be on antibiotics for five weeks no Ibrance, did nothing so had to have a killer painful surgery where they cut large tunnels in my upper thigh and took four months recovery all the time off Ibrance.

I am very very bad with my cancer meds. After that experience, my onco took me off the Ibrance (I hated it hated, it) and now on Verzenio.

Just as an experiment, I still get CT scans every three months. I decided bc I wanted to see and I stopped taking the Verzenio for a whole month right before I was to have my CT scan. My CT scan came back as stable.

I forget (honestly) about 3-4 times a week to take my pm Verzenio (you take it twice per day with no breaks). I am on the lowest dose of 50 mg. OMG...I love it so much better than Ibrance. I rarely ever need naps. Ibrance knocked the crap out of me and my off off was hell, I felt like I was dying.

At least two times in the past six months, I have left the cancer center and not got my injections. I told them I refuse to wait and hour and half to get injections that takes less than a few seconds to administer.

So twice in six months I did not get my injections and even though I try I always seem to forget to take my second dose of Verzenio.

Not advising it for others but nothing major happened to me. I was surprised after stop my meds for a month that my Ct scan came back stable.

But I dont really stress about the cancer. I dont know what my tumor markers ever where, I dont care what my blood count is, that is my oncos job, not mine.

I dont read books on cancer, I don't juice or follow any plant-based diet or take supplements. I do not eat any vegetables and I am still here doing fine. Not saying it is for everyone but I dont stress about the cancer. It is what it is.

I sleep fine the night before my CT scan and don't stress when waiting to get results. It is what it is.

I see too many women on forum boards get so stressed about their numbers and markers and thought Oh, no, that is not for me so I never ask and don't care.

I just need to know when it spread and if so what next? That is all I want to know.

Once I walk out of the cancer center, I got back home and back to my life and don't think much about it until my next visit. It works for me.

Andersl
Andersl
in reply to Hidden

I'm with you there. Stressing doesn't help. Just accept and see what's next xx

I had blood labs postponed for a month. So next labs are in two months. But, they called in the Ibrance prescriptions. They do not mail Ibrance in California, I have to go pick it up monthly.

Maybe they just don't need your labs this month?

Call to clarify.

Hidden
Hidden
in reply to klhowe

Wow...I am in US and live in NY. My Ibrance was always mailed to me. My onco writes the rx to the specialist pharmacy with refills and they fed ex it to me and send me a reminder email a few days before I am due and I just hit the refill button and it is fed exed to me all the time. Never given in person.

Now I am on Verzenio and I just hit the refill button two days ago and got it delivered today. I live in a doorman building where we have 24/7 doormen so there is always somebody available to sign for it.

Whilst this is alarming I would say try not to worry too much. Even if you end up having to take a break from Ibrance. It will give your white blood cells chance to recover. Many people (me included) have multiple breaks when neutrophils go too low. It did not seem to effect the efficacity in my case. In fact tumour markers usually went down faster when I was off Ibrance for whatever reason! Keep your chin up if you can xxx

Hi!

I live in California and yes, I had the same message yesterday. My onco asked me to stop ibrance for 6 weeks to allow my white blood cell count to improve. This would allow us to better fight the virus should we become infected. All my other medical appointments have been cancelled and my husband and I are quarantined until

further notice. No one is allowed in our home and we can only go out for walks in unpopulated areas.

It’s a bit scary as the ibrance has been working these 5 months and I’m nervous to be off it. More nervous though about surviving if I’m infected with corona virus.

Trying to be positive though and find ways of productively spending so much time indoors.

Take care and sending virtual hugs,

Kathleen

Mindysooty
Mindysooty
in reply to Red1246

It's so strange because earlier this week, I was given the exact opposite advice, ie it's vitally important to carry on treatment. I guess as things change and evolve, so will the advice and possibly be slightly different depending where we are. Take care.

I think it may depend on if the person is stable , as I have been told I could have an ibrance break ?! I was told that although routine operations are being cancelled eg hip / knee etc ., essential oncology treatment will continue . I personally do not want to be in a hospital , if I can help it ... yesterday I went for a ct scan , and a poor elderly lady ,who had a very nasty cough , was being pushed in a wheelchair by her daughter in the reception area ,and I kept my distance and moved away very quickly ,but it freaked me out ! It does say on the entrance for anyone with a bad cough not to enter via the main entrance , even tho it may not have been virus related . Take care too x

yeah I think we're all scared when we hear someone coughing aren't we. I do have a constant dry cough though, have had since all this started for me. Glad I'm not out and about or I think people would be stoning me lol. xx

Yes I said the same to my husband when he was coughing in public last week , after a cold . What is strange is that I had a ct scan yesterday and haven’t thought about it at all ... in fact I was so relieved that they allowed me to have it brought forward a couple of weeks ! I now seem more concerned about the virus than any progression I might have . How things change ! x

Red1246
Red1246
in reply to Mindysooty

It is strange to read all the different reactions by oncologists re the virus and our continuing with Ibrance.

Mine is head of the department and very into research so I must assume she knows what she’s doing by suspending the ibrance for 6 weeks, at least in my case. There’s certainly more than one way of dealing with this.

I can’t even go into the hospital for bloodwork so wouldn’t be able to restart even after my normal 2 weeks off. So, I’m going to stop stressing and hope for the best when I’m finally allowed to have scans and bloodwork to see where I am.

Ironic isn’t it that we’re trying so hard to minimize the metastases and prolong our lives when we’re hit by the threat of this virus!

Blessings and safety to all,

Kathleen

Mindysooty
Mindysooty
in reply to Red1246

it really is ironic. I had that very conversation the other day with Clare (Bella E). We were saying we've done so so well over the past year and just cracked on with things, carried on working etc and now this!!! And it forces you to think every day about bloody cancer because now day in day out we're having to protect ourselves. pffttt… Never mind, we're overcoming adversity all the time and we'll overcome this. Take care xxx

Hidden
Hidden
in reply to Red1246

I have been off Ibrance (was my first medication and I was only on it for three months). But a minor infection that I got every year this time did not go away with antibiotics as in the past. they stopped the Ibrance and put me on five weeks of antibiotics and still the infection got worse. I had to have a surgery where they cut large holes in my leg and was not able to stay on Ibrance so that I could heal. I was told a month but Ibrance messed up my immune system so badly that it took four months without Ibrance to recover.

Finally, when recovered, she THEN decided Ibrance lowered my white blood cell count too much and then put me on Verzenio. I told her how very very sick I got on my week off from Ibrance that I could barely get out of bed. She should have (in my opinion) take me off it sooner bc my 2nd week off was just as bad and maybe, just maybe I would not have had to go through the hell I did.

I’m in the UK and started Faslodex and Denosomab in December and Ibrance soon after. My neutrophils dropped to 0.4 then after three weeks gap, crawled up to 1 so had reduced 100mg dose of Ibrance for two weeks then picked up chest infection and was advised to stop Ibrance.

That was four weeks ago. Had a very frank discussion with Onc about Covid risk/ benefit of Ibrance and she recommended suspending Ibrance pro tem. Our risk of contracting Covid and the resulting potential complications means we need to make these risk/benefit judgements.

BellaE
BellaE
in reply to Nooze

Keep well and try not to worry.

At least we are seeing some sunshine now!!

Clare x

Hidden
Hidden
in reply to Nooze

I am more scared of the virus than the cancer. We have protocols in place for the cancer. Not much is known about this virus and having the breast cancer in my lungs, along with my compromised immune system to me, makes me think if I got the virus, I am done for. So much more scared of the virus.

Wolverine19
Wolverine19
in reply to Hidden

Yes me too. I think my doctor said my lungs are clear at least since my last key and end of January. But I do get some asthma-like symptoms that I think are after effects of the cancer around my throat and esophagus area. That's my concern about the virus.

Hi there

I am in Wales, and on the same combo as you. I got a call yesterday from my nurse saying they were deciding what to do about the “Palbo ladies” as she calls us.

Basically no going into the hospital at all. I have to get bloods done and someone goes to collect my meds. I was concerned about not having the Denosumab injection because I know that has helped with my pain. She said the injection often gets stopped for 3 months and that it may have already done its job.

She also said I will probably go to 2 monthly bloods which they also do when people have been stable for a while. This has also been discussed with me in the past. I have been on treatment for just under a year.

She said decisions are changing on a weekly basis.

I am an nhs worker on the Community and was sent home on Wednesday to self-isolate. I will be working from home once my remote access has been set up.

Eek indoors with my husband who works from home, and my son who’s school has shut down - for 12 weeks 😱😱😱

Clare x

Mindysooty
Mindysooty
in reply to BellaE

I suspect a lot of people will be thinking the same Clare - about being stuck at home with their loved ones. May love them but don't want to spend 24/7 with them hahahaha. I certainly don't anyway. At least you have a beach nearby and the mountains so you may get a few solitary outings.

My appointment is week after next so I'm just hanging fire until a bit closer the time. No point asking now as the advice could well have changed by the time I get to the appointment. I do hope there's some good steer about bloods because my options currently are go to hospital and sit in big waiting room with everyone else coughing and wheezing OR go to GP surgery and sit in a big waiting room with everyone else - ditto!! Not the best options so hoping there might be a good solution. I'm thinking they may say take the Palbo - which I've been on for a year and which I already have stashed at home having to 3 months worth last time - and I bet they say just forego the Denosumab. We'll see next week won't we :).

Take care. xx

Hi,

I am based in the UK and I went to hospital on Monday and Tuesday this week for my monthly appointment and treatments, so same as usual.

I was wondering about temporarily stopping Ibrance but nobody mentioned anything. I would be happy to give it a break for a while because of the threat of the virus but also to see if my markers stay supressed with only Letrozole. I suppose it would not be a problem to go back on it after a few weeks? (protocol at the moment does not let you get back on it once you stop).

Kind Regards,

Eva

I am in the UK and expecting that phone call but not had it yet. I should be getting deno and palbo next Wednesday. Fay

I am also in uk I am on same meds, been told to go in on tues for meds than next one will be in 3 weeks used to be monthly

Yes. I got a message from uk hospital where I go as I contacted them about what to do. They advised still to have blood test at gp’s as usual. They replied as follows:

Please do not send anyone to hospital to collect your meds (Ibrance and Letrozole) until you have had a phone call on 01.04.20 . That is to ensure your bloods are okay and you don’t have toxicities, before your next cycle of treatment is prescribed. Whoever comes to pharmacy gives you name & DOB or hospital number.

Your Ibrance & letrozole are your active cancer treatments. Densoumab is to counteract the effects cancer has on the bone however, does not treat the actual cancer. It is safe to miss doses & it has to be balanced with you self-isolating & the risk of you attending the hospital during COVID 19.

Luckily I am prescribed the meds on a three monthly basis so hopefully this is over in 3 months???!!!

Keep strong xx

I'm in Florida and it seems to be business as usual so far. My Onc wouldn't approve my continuing on Ibrance without labs. Thank goodness he did because my neutrophils were .53. I go for my Xgeva Injection today and will also get Zarxio to give my ANC a boost. i had been staying right at the 1.0 line with 100mg previously. I will drop down to 75mg now. At this point it seems worth the risk to keep the appointments.

I’m here now...course they already screwed up! Forgot my creatinine for my Zometa. Now I’m in the waiting room waiting for lab results even though I don’t have to wait for results to start! Ugh!

But yes they are open but I guess they have canceled a lot of appointments with the doctors unless necessary....

I'm in US Midwest (Wisconsin). My monthly oncologist appointment on Tuesday was canceled and is rescheduled for March 30. Was supposed to start Cycle 32 of Ibrance that day. Nurse said my doctor was having all patients take a two-week break from Ibrance to help boost immune system. Until recently I have tolerated 125 Ibrance well and doctor had changed me from two visits/blood tests a month to one. In December I was more tired than usual, so she had me take a two-week break from Ibrance. My understanding is that such breaks do not hinder the effectiveness of the drug. I have been extremely tired this month, so I kind of welcomed this break. Today is day 11 of Letrozole only and I'm just starting to perk up and feel a bit of my normal energy.

I was supposed to have a pelvic ultrasound yesterday for a closer look at "relative hypodensity" in uterus that showed up on January CT scan. That was also canceled and is rescheduled for April 30.

I'm 73 years old--self-isolating per onco's order. Definitely missing the fitness classes that usually fill my mornings (all canceled due to virus). The big question is where we'll be in 10 days when I'm due for blood tests and restarting Ibrance. I haven't posted here in ages but am trying to check in more often as I keep you all in my prayers.

Hi

I’m under Windsor Oncology and on the same meds as you - coming up to my 22nd cycle.

I’ve not been told anything... I’m due bloods on 30 March and Onc appoint in 31 March.

I would be concerned about missing a month .....

Jo xx

Hidden
Hidden

I live in US and not UK. Well maybe in UK they are thinking that since Ibrance lowers the immune system (I was taken off it in the beginning for almost five full months due to a normal infection that in the past would easily go away with some antibiotics so they had to take off the Ibrance).

Antibiotics for five weeks that worked in the past still do not work so I had to have the invasive surgery that I was hoping to avoid. I was off the ibrance the whole time since I had holes in my leg but the expected one month recovery took four months bc my immune system was so messed up.

Maybe they are thinking (only an assumption) that since Ibrance lower the immune system, that it it better right now until this have this virus situation under better control and information, that their patients should not be on it.

Hi beautiful ladies 🌺 my dr just called me to tell me NOT to start taking the Ibrance To take a 2 week break I am in Houston, Tx Stay safe

I’m in US and my onc wants me to come in .

Strict rules and temps taken before entering the office.

I’ve just had a call to say the oncologist will do a telephone consultation

However I’m still going in for bloods denosemab and to collect my drugs

I’m in UK...Nottingham

Barb xx

I'm in US and have heard nothing from onc. regarding suspending or changing treatment. My neutrophils and other bloodwork are within normal range, so other than avoiding people, hand washing, etc., I'm not doing anything special. I'm on same drugs you are.

No, I am still taking my Ibrance and Letrozole. I was allowed to go off it for four days when I had a bad cold but otherwise I am still taking it (21 days on and 7 days off). I think your doctor might be trying to get your immune system in good shape in case you contract the Corona Virus. You just might be doing the right thing. All the best. Hugs Marlene

No I went in this week and they have posted my ibrance as they didnt have all of them. It might not matter missing dansumab for 1 month as I am only have it every 3 months, ask them to post ibrance. I am also in uk

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