Coming off Ibrance and fulvestrant. Not feeling great.

[Ticket123]

Hello. So I am changing meds since I had a progression while on Ibrance and Fulvestrant. I am currently on a med break. I guess to get everything out of my system. It’s been a week since last dose of ibrance and a month since my last shot of Fulvestrant. I started off feeling like I had a cold and now feel nauseous. Not sure if it’s med withdrawal, a virus or cancer creeping back in. My Onc said my cancer was slow growing and that this 2 weeks period off meds would be ok. I am crushed to have to change meds but grateful to have meds to change to. I think if I feel better I will be able to better handle this change. I know all this unknowing and change is part of life now but I am having trouble with it right now. Thanks for any info or words of wisdom.

[Joannaaaa]

Hi Carla, sorry you have to go through this. changes in medication or new pain can be very stressful and scary. all I can say is take one day at a time, deep breaths are good too and keep faith in yourself, you will get a handle on the new stuff. sending hugs to you

[Ticket123 in reply to Joannaaaa]

Hello! Thanks for the kind words. I have to remember that how I feel ( freaked out, sick, scared, ) will pass and I will get a handle on the new stuff. Hopefully the cycle will continue for a long time!

[Aprilfoolz1]

Ticket123, I'm so sorry you aren't feeling well. It seems like you could have a cold or flu bug and it's a coincidence that the timing is when you stopped I/F. I'm hoping you are feeling better today. I suggest calling or sending a message to your oncologist . Med changes are stressful, sending you hugs. Keep us posted on how it's going and also when you start you new treatment .

[Ticket123 in reply to Aprilfoolz1]

Thank you for your reply! I am feeling better and I see DR on Wednesday so that’s good. I have to get better about the med changes because there is no avoiding them!

[Claireperth]

I am on a drug trial now but it’s not working. I feel frustrated that my oncologist just can’t prescribe the miracle medication! I am half in the living world and half thinking about the end which according to me should be in 6 years time!! I suppose having faith in your oncologist and hope in your heart is what keep us all going. I do hope for the best for you 🌸

[Ticket123 in reply to Claireperth]

thank you I hope for the best for you too. I’m sorry you are having trouble finding the right med. This is very hard. Im trying to be grateful for everything I do get but this definitely knocked me for a loop. I’m trying to stay focused on today. It’s tough though. I think you’re right! We just have to keep on hoping and keep on going!!

[Bettybuckets in reply to Claireperth]

hi Claire- I am so sorry that you are in that place… but I know what you mean… I had an operation on Friday and I found myself thinking how nice it would be to be put to sleep like this with all the hands touching me and tucking me in, and asking me to breath deep, rather than waiting and going. Very painfully. I too hope I have 6 more years.

[Bettybuckets in reply to Bettybuckets]

oh but I also wanted to say that I switched to cape 4mintgw ago… and now I love not being fatigued and it really helped my pain and other cancer symptoms. Yes I have to deal with the HFS but don’t be waste too much energy being afraid of trying something that might work for you.

[DDIL1 in reply to Claireperth]

I’m in the same situation. I’m 14 months into this and developed ESR1 failing meds and thinking like you with a timeline. I’m really praying we are wrong. Hope you find the right med.

[bikebabe]

I’m sorry you have progression and hope the new meds give you a new lease of life. See if it’s possible to treat it as an obstacle to get over / round towards that longer life - like you would do for a temporary side effect- There’s other meds constantly in development and hopefully a new super one will pop up in our lifetimes. Much love.

[Ticket123 in reply to bikebabe]

yup I agree. Gotta treat all of it like an obstacle. I’ve been knocked down by this for about a week but lots better today. Very much appreciate the positive reply!

[fancydog]

I think everyone's body is very unique in how it works with and without meds. It makes sense that you may have some sensations that feel different in your body since you have been on these meds a while. For one, you are probably having an increase in estrogen availability in your body. Often we are not sure what is going on until it isn't. I've had a bad Respiratory Virus for over 2 wks, neg for Covid and now hubby has it. Hope you feel better soon!

[Ticket123 in reply to fancydog]

Thanks for replying! I’m sorry you are feeling lousy. There seems to be lots of that going around here. It seems like it’s doubly hard for us to kick regular illnesses. I hope you feel better soon💕. I looked it up but couldn’t find anything about coming off these drugs. There must be some effect. Hopefully not the cancer growing!!!

[mariootsi]

So sorry you are dealing with this stress. It's all such a Rollercoaster! I'm on a break from Ibrance too after being in the hospital for Neutropenia Boodwork tanked. Praying we can both go back to Ibrance. Let us know what happens. Praying for you to feel better.

[mariootsi in reply to mariootsi]

Hope you both feel better soon

[Ticket123 in reply to mariootsi]

Thanks! That Neutopenia is a beast!! I hope you feel better!!

[mariootsi in reply to Ticket123]

It is a beast

[Bettybuckets in reply to mariootsi]

can you switch to Verzenio… thst worked for me without the netropenia issues… for a while anyways.

[mariootsi in reply to Bettybuckets]

It's up to the onc I guess.

[Eliactida1955]

Don’t worry sounds like you have a great onc. Where do you live? I was on ibrance and letrozole and went off bec of tumor markers rising. It’s ok to go on a ibrance holiday . This was studied by Dana Farber last march of 22 a Friday where some patients stayed off of it awhile. You could start it back but my once wouldn’t hear of it. M d Anderson on believes once it stops then you need to change meds. I did the best with that med. I’ve been on affinitor and aromasin didn’t work and fulvesterant for 5 months -no! 🥲I am staring today xeloda and I pray for the best. 7 horse pills a day. We will see. I wish you the best-be strong -my cancer had progressed in the bones and a spot on the liver now. Let me know what your dr does. Take care!🙏✝️🌹

[Ticket123 in reply to Eliactida1955]

my tumor markers kept going up so I probably am off Ibrance and Fulvestrant for good. I got a year and a half. I am grateful for that. I go to Dana Farber. I live in RI. I heard xedola works well!! Good luck today! I am going to go on a trial that compares standard of care with a new drug Giradestrant. Currently on a med break to clear out my system.

[Eliactida1955 in reply to Ticket123]

wow thanks for responding and I wish I could go up there as that dr who did the study is great. Let’s hope it works started this am xeloda. Feeling sleepy but I am always fatigued. Good luck and let me know about the treatment…🙏✝️

[Eliactida1955 in reply to Eliactida1955]

is this a pill form of the med? I bet it’s I’ve -let me know

[DDIL1 in reply to Ticket123]

do you have ESR1? I saw the new trial you’re going on it looks very promising. My markers were climbing as well62-198. I hope you get a good response on this trial.

[TammyCross]

It is really confusing when one has "indolent" cancer and the first treatment is easy to take, then fails. I did really well on Ibrance and fulvestrant. I went from many mets all over, and a big tumor in my chest, to NEAD. The side effects were light. Then I went on an oral SERD in a clinical trial: NO side effects, felt great, and NEAD again. Then that failed. I am now on 3rd line of treatment and have unpleasant side effects from each of the two meds, and may have progression. I am having trouble dealing with it.

I think I got spoiled by my lazy cancer and the lack of side effects. I have to keep telling myself that this is serious business, many people here have been dealing with side effects -- often worse than what I have now -- and this is what it is like to have mbc. Lucky there is anything that delays it without completely interfering with my QOL. It is an adjustment.

I have often taken breaks between meds. My oncologist is big on breaks, during changes in meds, during dose adjustments. They are not dangerous at all -- at least for indolents. You might be sick (I think I am right now; hard to tell sick from side effects) or your body is adjusting. That is what breaks are for. Only two weeks? I usually get a month off, and it is not until the 3rd week that I feel normal again. Of course, we always imagine it is cancer, but it probably is not, just your body reacting to these strong meds we are on, or going off them.

[Best521]

I don’t have any words of wisdom to share, only empathy. I am also in the middle of a washout period before moving on to my next treatment and a trial. After 16 months, Ibrance and Letrozole failed. As a result, I will be starting Fluvestrant. However I will also participate in Phase 3 of the Monarch Trial to see if Verzenio will give more time to MBC patients who have had a previous failure on a CDK 4/6 inhibitor. It is a blind study so either Verzenio or a placebo will be given along with the standard of care, Fluvestrant. It is great to know there are more options, but also disheartening when you know you are further along on the journey. One thing for sure, I am doubling down on living to the fullest.