IBRANCE/FULVESTRANT...

[JimmyStewartHarvey]

Starting 1st treatments and pills on Monday. Any advice?...I am a little scared of the Ibrance. Dr. Starting me at 125mg.

[Hidden]

Hello JimmyStewartHarvey,

I've been on Ibrance 125 for almost five years and have had no problems. My blood counts do crater a bit on the "off" week, but I've had no ill effects from this, i.e. have not even had a cold during this entire time. Everyone's experience is different, of course, but I would suggest you take a "wait and see" stance on it all. And of course look online to see what you can do to boost your immune system....

I, for one, am so incredibly grateful for this medication. It has contributed (in addition to the two AI's I've been on) to my longevity and good quality of life. Truly, I thank the researchers for coming up with this concoction that doubles the effective duration of the traditional meds. I walked by their home office in NYC last week and saluted, no joke.

I know it's all scary....I don't mean to discount that...but I'd view Ibrance as your very best friend... If your friend turns on you, I'm so sorry..but I do think optimism is warranted.

Be well,

Lynn

[JimmyStewartHarvey in reply to Hidden]

Thanks for the advice

[SunshineBoss in reply to Hidden]

Ditto although I’ve only been on it since May of 2019 with only minor side effects. Think positive! ❤️

[Shafight in reply to Hidden]

Ditto here. I’m so gratefulFor Ibrance iAd fulvstant. Little side effects. It’s keeping me alive. I had terrible side effects from 3 yrs of Femara

[TuliS]

Don't worry, I'm on it for 4 months now & no side effects TG so far. just think positive, you'll be fine

[Iwasborntodothis]

Just started my 5th round, very few side effects. Number good and tumors shrinking. Changed my diet to more veggies, lost ten pounds, and I am super grateful. This board will be a great comfort for you.

[JimmyStewartHarvey in reply to Iwasborntodothis]

Thanks so much for the kind words...Helps to hear from someone who has experienced it.

[mariootsi]

I was scared to start too. Switched from 125 to 100 when platelets went too low. I find Ibrance very tolerable.

Good luck! Just alwaysxlet your onc know if you have any issues.

I suggest you take it with food and always drink ALOT of water all day!

[Hidden in reply to mariootsi]

Same here. After about 6 months we switched to 100 mg due to fatigue. My numbers remain low. Fingers crossed.

[JimmyStewartHarvey in reply to mariootsi]

Thanks so much...got to get better about drinking more water

[Jerseygirl45]

Hi

My first treatment was Ibrance and letrozol. I loved Ibrance only side effect was a little fatigue and stiffness in bones. Lowered my tumor marker quickly from 2200 to 168 never been that low since. All other treatment came with lousy side effects. I was on it almost 2 yrs.

I started on the 125mg and white cells went so low then they put me on 100mg and I was good.

Don't be afraid even on here there have been less bad side effects with Ibrance than other meds.

I keep a daily journal even if it. Is had a good day or had a a day in bed with vomiting and diarrhea. Be surprised how many times I had to go back and see how I felt on a certain treatment.

I was sorry when it stopped working roller coaster ride since.

Hope it does well for you.

Barbara

[JimmyStewartHarvey in reply to Jerseygirl45]

Thank you...all of this is helping to calm my nerves. I feel better prepared. The journal is a great idea.

[carolannjohnson in reply to Jerseygirl45]

Dear Barbara, If your Ibrance quit working, as mine has, what are you on now? My Dr put me on letrozole only. I feel he doesn't know what other drug to use . Don't know where to turn or who to call. any help out there. I live in McAllen, Tx.

[Jerseygirl45 in reply to carolannjohnson]

After Ibrance and letrozole I went on Afinitor and Faslodex injections. I had a lot of side effects and went on Taxol chemo and injection day after. Was on it for6 months got very sick in June. Went off Taxol NowI just started Gemzar chemo and exgeva once a month for bones..

Barbara

[Jerseygirl45 in reply to carolannjohnson]

Afinitor verzenio and Kisqali are same family. Oh I forgot I was on Kisqali before Gemzar. Liked it no side effects but doctor said it was not working.

[Hidden in reply to carolannjohnson]

I only lasted on Ibrance for three months but not because of progression. I am now on Verzenio. For me I hated the Ibrance bc I got so so sick on my week off (everybody is different) and then developed an infection because my immune system was shot and was off Ibrance for almost five months recovering from the surgery needed when the antibiotics did not work.

My onco then switched me to Verzenio. You take it twice a day with no breaks. I could not handle the 150 mgs. nor the 100 mgs. She then gave me the lowest dosage which is 50 mgs. twice per day. I no longer have the fatigue that I had on Ibrance. With Verzenio though there are some gastro issues, severe constipation and more often, severe diarrhea but I have learned to manage it. I much prefer the Verzenio bc I don't have the fatigue I got from Ibrance nor do I have to worry about the week off anymore.

[JimmyStewartHarvey]

Thank you so much....all of your words so helpful. I am so happy to have found this group.

[Merma]

I’ve been on Ibrance for over 2 years. Other than low blood counts, there hasn’t been any major issue- just a little fatigue.

[Gwennie123]

Hi I took it for 15 months. The first two months were difficult - aches and pains- spent a lot of time in bed. After that it was smooth sailing. We all react differently. I found it to be a very effective drug. Pay attention to your body and treat it the way you would a,newborn.

[Jerseygirl45 in reply to Gwennie123]

I know Iloved Ibrance. Got almost two yrs on it.

[Arisgram]

Hi there! I have been on ibrance and aromasin for 1 year this month. Everything everyone has said here is true. Don't be frightened. The side effects are definitely manageable. When my counts dip a little low, I drop down to 100 mg for one cycle and back to 125 after they recover.

The one thing I experienced I wish someone had warned me of...... I experienced tremendous aches and pains the first couple of months. However, my first scan showed me clear of disease. I believe it is Lynn who says to remember aches and pains can be a sign of healing. Now when I am tired and achy, I just think to myself it's the medication working!

Best of luck, and keep in touch. We want to know how you are doing!

Andi

[Lordmandy]

Started when drug was new in 2015 on 125 mg. ANC low, so they dropped to 100 mg. Much more is known about drug now and I have increased back to 125. Tired at end of cycle, but then ok again. Thankful for access.