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Continuing ibrance with Coronavirus pandemic.

Thatflowerlady
Thatflowerlady

What has your oncologist/ oncology office said about continuing ibrance treatment during the Coronavirus pandemic? I have not called mine yet As I figure they are very busy preparing and I am not having any difficulties.

Have you been told to finish this cycle ? Take a break ?

Luann from Ontario Canada

53 Replies
oldestnewest

Hi Thatflowerlady -

It's sort of confusing right now...I have read at least one post/response on this site from someone whose doc told them to stop the Ibrance. But it seems most of us are not being told that. There's also discussion re: trips to the doc/hospital...what's worth going in for? I'm sure that varies based on our individual circumstances, so I would def check with your doc. But in many cases it's not unreasonable to forego labs, e.g. but maybe go in for infusions/injections? That's how I'm currently handling it, based on my own completely unscientific take on things...My doc has said nothing yet, but I haven't asked...

The first really scary week here at the first of March that is what I did , blood work , injections, quick visit to emerg & X-ray ( we live in a small town there were 3 people in emeg that day . And then home to self isolate again . I am Curious what next month may bring .

Hidden
Hidden
in reply to LynnFish

Maybe each onco is basing it on their patient's medical health. Some may have other medical issues plus take other medication while others it just may be the cancer they have and are in better medical condition so if they don't take their ibrance, their immune systems may protect them a bit better.

Also, I go next week for my injections. If the oncos and technicians and receptionists and others can show up to work at the cancer center, so that I and others can get our treatment, then I can make it in. I have cancer and these workers do not. So I am thankful most of them are showing up for work. My onco told me that they are half staffed but that is because here in NY we are in almost total shut down mode and many were not prepared for the fact that all schools are closed and will not be opening before the school years end so many of them were not prepared for that so cannot come to work.

But if the others can, then I can at least make their effort worthwhile and show up. When I called the other day I spoke to the receptionist and an appt. scheduler and I thanked both of them individually for coming to work regardless of what is going on in NY (the worst state in US) and I appreciated their coming to work so that I could get my treatment.

Apparently, we got so much on our minds, most people don't acknowledge this and both of them were very appreciative and I could hear their surprised and they thanked me for thanking them.

My onc approved a two month supply of Ibrance without having to do labs (my labs have been ok the last few months) and told me my regular appointment was changed to a video appointment and to not go to the hospital, but call oncology.

Crazy days, aren't they!

Anja

Thank you for your reply Yes definitely crazy days. I am 1/2 way in my cycle of ibrance and doing fine so I don’t want to bother the clinic I am sure they dealing with so much right now.

But I am curious as to what others have been told .

Different countries seem to have different protocols in ibrance treatment .

I have not called my oncologist to ask so I am continuing my Ibrance. My monthly labs were canceled but they have been stable. I am due scans in June so I hope this virus mess will be over by then.

Stay healthy everyone and away from people.

Luann I will continue to take my regular dose and when I met my oncologist a number of weeks ago she gave me my current month cycle and said she would be asking the pharmacy to ship the next months to my home. We had already decided I wouldn't see her again until May anyway. I am due for my Zometa infusion on the day I am supposed to see my oncologist (early May)and scans in late May. I have an open requisition for my lab work so I choose when to go and likely won't get it done until before the May appointment. Things are changing daily it seems so I guess we all have to play it by ear. I just want to continue my Ibrance/Letrozole regularly and that's my main focus....labs and scans may be delayed. I also hope to get my Zometa infusion as scheduled (every 3 months)because I have such extensive bone disease and have had multiple pathological fractures so my body really needs it....but that may be out of my hands. Good luck.

Sandra

Thank you so much Sandra

Can I ask if there is a reason for Zometa vs xgeva ?

Simple reason....it's not covered by my healthcare. I could pay out of pocket $700 a month if I wanted it. Zometa has worked well for me so it's not something I need to do at present.

Sandra

I am presently looking into alternatives to the xgeva & faslodex , my husband is going to retire in the near future and I will no longer have drug coverage for these 2 medications .

I have read a little bit on the Zometa , I also understand that since I have been on xgeva for 5 years I might be ok to not have it monthly . I am just looking at my options .

Thank you !

Luann I have always gotten my Zometa infusion every 3 months since diagnosis never monthly. Faslodex isn't covered in my healthcare either but apparently I can access it if I pay $2200 a month and buy elsewhere. None of that stuff is sustainable for most of us long term. I have been on Ibrance/Letrozole from the start with the Zometa. I don't have an issue at all with the Zometa infusions. If you decide to go that route pm me and I'll give you a few tips. Good luck.

Sandra

Red1246
Red1246
in reply to girlsptz

Hi Sandra

I’d be interested in hearing what your Zometa tips are. I began infusions, ibrance and Letrozole in September, 2019. As my metastases are in spine, my oncologist has me on monthly Zometa infusions for the first 6 months and would then switch me to every 3.

With the new virus, she’s got me off my next infusion, due this month and is changing all her patients on monthly procedures to every 3 months for the time being at least.

I read someone say it was easier on your system if they gave the infusion over 1/2 hr VS 15 minutes so I ask for that each time.

Thanks for any tips you might share.

Take care!

Kathleen

Hi. The dr called yesterday and said Stop Ibrance for now 🤷‍♀️

Are you on your week off ibrance ?

Hi Luann

I’m also in Ontario.

As well, I’m also on Ibrance/Letrozole and zometa every 3 months. I finish my cycle of Ibrance in a few days and I’m supposed to see my oncologist on April 2nd for bloodwork and Zometa infusion. I usually see him every 2 cycles and this is the second cycle this time around. I haven’t heard anything yet and I haven’t called either as the appointment is next week.

I don’t know if he’ll say to stop or not as I need two weeks off for my neutrophils to come back up. I can let you know what happens when I know more.

Susie

Thank you Susie that would be great if you could let me know . Which cancer centre do you go to . I am London Ontario area

HiLuann,

I’m in Mississauga, not too far away from you.

That would be great Susie , thank you . I hope you are doing well. I am on ibrance 100mg , Faslodex , and xgeva.

My concern is the lowered immune system because of the blood counts caused by the ibrance .

I agree with you on that! I’m also on 100mg ibrance (letrozole & zometa) Because my blood counts don’t rebound in one week I have to stay off ibrance for two weeks. I have 3 pills left for this cycle and am wondering if I should stop.?!

Don’t need the added worry of getting neutrophils even lower and then being more at risk for 2 weeks!

I asked my doctor 2 weeks ago and he said to finish the cycle. This is my week off and I honestly don’t want to go into get my labs done. Plus I have to go to the hospital pharmacy to pick up meds if info go on another cycle. I will find out this week. I will definitely ask again!!

Ibrance can be shipping to your house for free

have your previous labs been ok ? Maybe they will let you skip the labs and have the ibrance shipped .

I understand what you mean about going for the labs ,I went to my local blood lab & medical clinic for my injections at the beginning of the month (just when this started in Ontario ) . I was thankful it was very quiet and I did wear a mask ( if that helps )

I don’t go in for a blood draw till the middle of April, so I’m just continuing on my ibrance. Thankful I’m doing ok.

Thant is wheat I am doing also . Just wait and see or wait for a call .

I have to go for bloodwork tomorrow which has me worried but we have been told only essential bloodwork will be done (cancer patients, etc) so there won’t be many people there. Also my oncology nurse called me last week and said my appointment this Tuesday will be by phone. I’ve been waiting a week to get my scan results and the anxiety is through the roof.

Hi there

I’m in the uk so will differ to you.

My nurse phoned me. I had bloods in my doctor’s surgery this morning.

I am having a reduced dose of Ibrance starting today (not because of bloods, just to help my immune system). I am driving to the hospital later. The nurse is going to bring my tablets out to me.

They are reviewing the situation monthly still here.

Good luck all, stay safe

Clare x

I have been thinking about this. My insurance didnt want to pay so i have not rcdv yeti. They approves just the last friday. So i will start on April but depend how this virus unfold here in América. I dont want to be kill faster! And my cáncer is stable so one month without wont kill me!

I have had a low-grade fever and wet cough for over a week and what felt like sinus infection. Stopped Ibrance on day 8 for two weeks. Yesterday after a week of dealing with these symptoms, am getting an antibiotic from my GP with a plan to finally get rid of whatever I have. Will plan to resume Ibrance after that.

Sorry to hear you are not feeling well .

Keep me posted as to your symptoms and clearing up with the ibrance break . I am really curious as I have had a dry cough for 6 months .i went from having a drippy runny nose for a few weeks during each ibrance schedule to post nasal drip and sinuses & very annoying cough .

Dr has said take an allergy pill ( it doesn’t help )

Feel better soon .

This was MY idea....every once in a while I need MY common sense instead of the doctor's. Right now I am very lucky to be NED and thus I want to use this time to try to clear this up once and for all.

I would really appreciate it if you kept me posted on how you are feeling with the extra time off .

Luann

US here - I called my Dr. to ask about stopping the Ibrance, which I was suppose to do for an impending surgery anyway. The surgery was cancelled until June but he told me to stay off the Ibrance until this virus passes. (Husband is an airline pilot). He said to keep taking the Letrozole. I have been NED for one month. I was concerned that I could be off Ibrance for 3 months or longer but he said, it would be fine and that the Ibrance just helps in combination with the Letrozole. Hmmm.......OK.....kinda makes me wonder if we need to be taking the Ibrance or is this a money maker for the pharmacy. Is Letrozole really the pill making all the difference?? The reason I question it, is because I started the combo in August 2019 - 6 months later I'm NED - however, during that time I was only on Ibrance half the time due to low ANC. Is anyone on this board, ONLY taking Letrozole and having good results? My next appointment is May, no scans, so I do think my appointment will be by telephone, with blood work & lupron injection at local center versus Dana Farber.

I have wondered about the $ making thing also on some medical treatments / procedures . But I am honestly afraid to not do what is recommended for me .

That is great that you are doing so well .

Hidden
Hidden
in reply to OceanBreeze3

I had to go off Ibrance. I was only on it for three months but I hated it. I was on 125 mgs. and did not even know you could ask for a lower dosage (I learn so much from this board as to even knowing there were lower dosages you could ask for.) But that is what I learned most from this board that everybody has totally different reactions and side effects to the same med.

I do not use this board to ask what treatment I should take or what supplements will help me. I only use medical doctors or staff for that type of information.

But realize I had just been diagnosed and Ibrance was my first experience with any kind of med like that. I never had chemo, radiation, etc. first like many of these women so I am thankful for that.

She put me on Ibrance and all she told me was that "food may taste different." Well, by week three I felt the first of Ibrance fatigue. I felt like a train hit me and thought OMG...I won't be able to handle this. I had to take 2-3 hour naps during this period. Then my week off was coming up and I thought Thank God. Well, I felt like I was going to die I got so sick.

It was August here in NY and very very humid. I had to turn off my central air and I could feel or sense how stuffy it was and yet I was shivering. It felt like my blood was like ice water. I had wool robe on, several blankets and was in bed and shivering that my teeth were chattering. It scared me. I told my onco (who seemed surprised LOL)

I then found this and other forum boards where some ladies felt the same on their week off, some had more energy and others felt just like me.

Well, three months of it and I developed an infection that I normally got in the past but antibiotics, again in the past, would knock it right out of me.

They took me off Ibrance, put me on five weeks of antibiotics that did not help. During this time I was in pain and could barely walk because of the infection.

I had to have surgery and tunnels were cut into my upper left groin of my leg. It was hell. It took four months for the holes to close. I could barely walk and had to go to ER twice.

I was off Ibrance close to five months and THEN my onco decided Ibrance was not good for me (still a bit angry that she didn't think to take me off or lower my dose when I told her how sick I got but I was all new to this.)

But I was off it for FIVE months, before my onco decided what to put me on, I had to have ultrasound and then another mammogram and it was discovered (I still have the original tumor in my breast that ANOTHER cancer tumor had formed far from my breast during my five months off). Luckily, it was the same type of cancer.

I questioned why my onco was scheduling me for biopsies when we already knew what type of cancer I had. I then learned that you could have two different types of breast cancer in the same breast. I WAS SHOCKED. Luckily, it turned out to be the same type I already had, so not major change to treatment except she put me on Verzenio. And the new tumor has not changed or grown at all.

I am now on Verzenio (lowest dosage at 50 mgs. twice per day with no breaks). What a difference. No more fatigue, naps, no more getting scared of the week off.

Maybe if I had been off the Ibrance for only 3 months, it would have been different. But I was still getting my injections during this whole five months, but no Ibrance and and a new small cancer tumor had been found when I was ready to go back on full treatment.

So I don't think the Ibrance is given to patents just to increase profit. When off it for a long period, I grew another cancer tumor.

13plus
13plus
in reply to OceanBreeze3

I once had a second opinion at Dana Farber. The doc told me that honestly there is no way for them to know if one drug or the other or the two drugs together are working for any particular person. I started both together so have to assume both are working but it’s impossible to say unless one has started with only letrozole and has positive results.

I have an appointment for bloodwork, see the oncologist and my first zometa infusion March 30. Have not called yet to see what is happening. I really want the zometa infusion as I have a lot of tumours in my spine.

I am also due for scans. It is a very worrisome time with this virus. I feel very down and isolated at times. Thanks for all your support.

Hidden
Hidden
in reply to Totheriver

Everybody feels the same. I live alone, have no family or friends close by. I also live in NY where we are the state with the most infected amount of people and rapidly growing so quickly in amount of people that are affected that NY is almost in lock down. Schools are closed, all companies are closed.

Close to I think 18,000 in NY alone and NYC has almost 8,000 people infected and God knows how many of us already have it. Every day I wake up and there the numbers increase in the thousands.

I feel for the hourly workers who live check to check and now that NY schools have closed their children are home which means (for many single parents who say work as home aides) cannot go to their jobs so now the elderly have no one coming to help them.

My friend who is a Brooklyn, NY teacher (and it was the last of the schools to close down last week) said they waited so long because the kids in her school they get free breakfast and lunch. When school is closed, they only usually get one meal a day at home. Today, she starts teaching them via online and they have already said NY schools won't be opening for the rest of the school year for sure. And now people have kids at home that they cannot allow to go out and play. It's just sad all around so I try not to focus too much on how I feel and realizing so many people have it worse. The thought that children are going hungry as their parents have no money is heart-breaking.

Hourly workers are not getting paid. The NY UE crashed bc so many people are trying to claim benefits so that they can get money and FEED their kids.

They had interviewed an UBER driver in NY who said he was on the streets for 10 hours in NYC and only made $16.00 and he has three kids to feed. A lady (single parent) worked 12 hours and made $25.00.

Even the charities are running out of food.

So when feeling upset just remember (it works for me), I thank God, I get my SSDI coming in and I realize there are people and elderly literally currently with no food and not eating.

It's a scary time to be living in NY. It is worse than what Italy had and it is spreading fast here then it did in China. They are saying quaranting oneself makes all the difference to "flatten the curve." They expect the NY hospitals to be overwhelmed shortly with people who will start getting sick and they expect to be overflowed with people.

Maybe there is something you can do. There are many volunteer groups (people on their own) that are trying to find those elderly or people who have no children with no food.

You may even find an organization to call an elderly person at home and just chat with them bc many are feeling very isolated. We may not be able to interact with people, but we can call the elderly or those who are disabled and live alone just to help with the feeling of isolation. So possibly consider that to help you overcome your fear and feeling so isolated. Helping others always makes one feel valued as they are contributing. God bless.

Pbsoup
Pbsoup
in reply to Hidden

This is so heartbreaking. We left NYC about 18 months ago for SF but I lived there since college so it’s still “home”.

Stay safe!

Hidden
Hidden
in reply to Pbsoup

Thanks. It is just scary how quickly it is spreading in NY. Thousands each day, not hundreds. Loads of people have compromised immune systems, but my breast cancer is in my lungs and I have been in treatment for a bit over two years so I just feel that if I get it and it goes full blown (sign would be a fever over 104) that I won't becoming home from hospital.

So right now, me (and my whole building) are staying indoors. The management company (I live in a large high-rise) sent us email that our workers and porters WILL NOT be doing any work in any of our apts. ONLY if it is an emergency, like a flood.

I lucked out as I live alone and have no family and no FRIENDS that even live in Brooklyn. But right before it hit how quickly it was spreading, I had placed an order with Peapod and usually buy (which I did) the large orders of Scott toilet paper (20 rolls), 10 extra large Bounty, 35 bottles of water, 10 jugs of gatorade, shampoo, dial disinfect soap, laundry detergent (had it on sale so bought 2). And like three days before that (now that I was finally getting pain meds since I was unable to walk very far without my lower back giving out and I don't drive so I was already stuck in my apt.) I took the bus to an Italian specialty store. Because of the pain I could walk far at all and where I live there are no real stores. primarily residential.

So I got my percocets and gabapentin and was able to take the bus and I stocked up on $200 worth freshly made meals. Lasagna, egg rollatini, meatballs, chicken Marsala and then wrapped and frozen them.

It was like three days later the shyt hit the fan here in NY so I am stocked. I am grateful for once I did the right thing.

I went to small family owned pharmacy three blocks away and picked up six of my prescriptions so feel safe there also.

It just gets scary every day when you see how high the number is increasing. Thousands...every day in NY. I can't do much more than what I am doing.

Basically we are in lock down. Many of my friends are fortunate in the fact that they are still getting full pay. I am grateful I am getting SSDI.

Many hourly workers are getting nothing and probably dont even have food to feed their children. The NY Unemployment board website crashed bc the number of people trying to apply bc they are broke.

I just feel for those elderly who are alone or the children who bc they are not in school are no longer getting the free breakfast and lunch.

Its just a horrible trickle down effect. Day by day. But soon I will be putting on netflix. Like 9/11 (when I worked downtown) there is only so much you can listen to and then have to turn off bc its gets overwhelming.

God bless.

Pbsoup
Pbsoup
in reply to Hidden

And like 9-11 this too shall pass. I remember then thinking the world had ended. But it hadn’t

It’s pretty isolated out here in California too. Same sort of issues. But people are by and large following instructions

And at least both of us have governors who are adults in the room.

Hidden
Hidden
in reply to Pbsoup

Kind of different though. 9/11 just affected primarily New York City and (God bless them) but people died, most instantly.

This is different. This is much much worse. We didn't need the hospitals after 9/11 bc people did not live.

We now are up to 12,000 just in NYC alone which is 4,000 more than yesterday. This too shall pass but at what cost.

We don't have enough hospitals or machines when these infected people (the ones that will get sick) have to be hospitalized.

No, this is not like 9/11 in those respects.

Pbsoup
Pbsoup
in reply to Hidden

That's true. And I agree, at what cost.

Hidden
Hidden
in reply to Pbsoup

There will be picking and choosing. They will not be able to treat all. You have say 2,500 people that suddenly the virus is coming on strong, the fever, the coughing...even NY is not prepared for this and Gov. is saying its is going to get worse and to prepare ourselves. We have limited resources on doctors, nurses, ventilators, hospital beds.

There will come a time (sounds like a bad TV movie) when they will have to make choices about who they can treat and soon there just wont be any more beds or room or God forbid when the medical personnel start getting sick.

God hear our prayers!

Totheriver
Totheriver
in reply to Hidden

I totally agree that people have it much worse and I am ok.

I hope your Zometa infusion appointment goes as scheduled.

Yes it is a very complicated time.

I have not been told to stop.

Are you continuing your ibrance as scheduled ?

I haven't been told anything, will keep you posted.

Thank you

On 7th round of Ibrance/Faslodex. I have low WBC/ANC and need weekly blood test to closely monitor count. Besides cancer treatment, low immune system, I’m 65 years and live in one of the US hot zones - California. My oncologist said today for me not to leave the house - skip blood test this week and Faslodex shot next week. Clinic has cancelled all in person visits for next 2 weeks then will reassess. Only those needing chemo can go in.

I am glad they gave you clear direction .Take care of yourself .i hope this pandemic will be under control soon .

Thank you for sharing .

Luann

I have not been told anything and am continuing my usual routine.

That is what I have done so far also .

It appears that some people have been given direction from their clinics but this is also in other countries.

I have ordered my medications to start my next treatment cycle but will wait to see if I hear anything from my oncologist office and if I should go for my monthly blood work or take a treatment holiday

Its a wait and see for everything .

Thank you for the feed back

Luann

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