4th month on Ibrance 125

[Miffy49]

Hello everyone, I rarely post but this 4th month of ibrance 125 and letrozole is really tough. I made it about halfway through it and quit. The side effects are bad and I'm always in a fog of tiredness. I also had gotten stomach flu this week. I go back to Dr on Feb 6. I was staying positive four months ago when I first diagnosed with this, however lately I feel overwhelmed with the reality of the situation. Any thoughts or experience with this? Thanks Kim

[nstonerocks]

Did you tell your doctor you were stopping it? Ibrance and letrozole can be tough. Ibrance is notorious for the fatigue it causes. You are on the highest dose. Your doctor would probably try a lower dose. It happens all the time. It does take a while to "get used to," both in terms of your white blood count and the fatigue, but 4 months seems like a good effort. Don't count Ibrance out yet. Letrozole can give you joint pain. I was stiff and in quite a bit of discomfort from it, but I took it for about 3 years and dealt with it. Now that I've been changed to faslodex, the pain is gone. But now have to travel half a day back and forth to the city to get it (it's two shots in the butt. Ouch). I feel a lot better on faslodex. Feeling overwhelmed is something we all deal with. It's really rough in the beginning, and then is like a roller coaster ride. Some days/weeks/months will be ok, and then something will trigger you and the reality, as you say, becomes really hard to deal with. Being tired and worn out is a set up for feeling defeated and depressed. I find I do have to take naps on Ibrance. I work full-time and come home and doze sitting upright on the couch. Sometimes I have to cave and take a nap, even though the common advice is push thru it (because a nap will disturb your sleep/wake cycle), Listen to your body. Give some thought to what can support you emotionally. Religion, therapy, meds, planning a trip, an outing with friends, a hobby...It takes conscious effort to put in place coping mechanisms and filling your live with people and things that give you joy. Be up front with your oncologist. Tell him/her everything including how down you feel. Call the SHARE hotline. They try to set you up with a woman who shares your clinical picture. I called several times and it was a big help. Check out Kris Carr's website. She has Stage 4 cancer and you will be amazed by her story and all the resources on her site. Don't isolate yourself. Let us know how the visit goes. Hugs.

[Miffy49 in reply to nstonerocks]

Nstonerocks, thank you

[Have-faith in reply to nstonerocks]

You are super with your replies nstonerocks! You always write such great responses.

[nstonerocks in reply to Have-faith]

Aww shucks!

[Red71]

Nstonerocks is right on. My doc told me it would take about 6 months to get to my new normal...I hate that term! It actually took about 8 months but I started out in a pretty bad place with back compression fractures. I don’t know if you are working or have kids at home or what your situation is, but I found I had to start out slow, rest a lot, figure out how to deal with the side effects and figure out mentally that the only control I had was over this disease was my reaction to it and how I would handle it. I still can’t do as much as I used to so I decide what’s important and what’s not and control what I do much more than I used to. Taking my medication is what is important because I want to survive this. Taking the pills at dinner time worked better because I could pretty much sleep through the slight nausea and the weird taste in my mouth that I would get. That doesn’t bother me anymore. It does get better but you do have to continue pacing yourself. I also have less fatigue when I have a goal and something that I want to do, so I’m sure some of it is mental! But if I have a busy week and I’m tired, I give myself permission to take the day off and curl up in the recliner with a book. I’m lucky in that my husband can see when I’m tired and he will make dinner or pick up the slack. Please talk to your doctor and don’t give up. Life is worth fighting for!

[Southside25]

Try going to a lower dose, 100 or 75. If you're concerned about lowering your dose, I found this on another support site. The copy gets a little weird doing a cut-and-paste, but you can read it. I've gone from 150 to 100 and scans are still good. Hope you find this helpful:

"I just had an appointment with my oncologist yesterday-- she told me that a Pfizer

representative told her recently that post-marketing analysis of both the earlier clinical trials and actual

patient use (data to be released in the future) is showing that ANY dose is equally effective-- that if it

works, it works, regardless of the dose, and there doesn't seem to be any correlation with degree or

duration of response based on dose.There will be more sub-group analyses reported in the next year or so

trying to determine if a particular sub-group of patients (lobular vs ductal, ER+only vs both ER and PR+,

etc...) responds better than others....

So I wouldn't be concerned about lowering the dose- I am almost at the end of cycle 32--the last 28 of

them at 75 mg. So it hasn't a􀁷ected the effectiveness for me...and I will continue at this dose at least until

my next scans in January.

One other thing to consider is a recommendation from a research pharmacist I talked with when I was

having difficulty with the higher doses and low WBCs/ANC-- he said, based on his knowledge of cancer

biology and where Ibrance works in the cell reproduction process, it is his recommendation to take a

lower dose for more days in a row and also minimize the amount of time o􀁷 the medication, than to take

a higher dose for fewer days or having longer days-o􀁷 intervals.

Hope that you find that you get less side e􀁷ects from the lower dose. May you dance with NED for years to

come!

"

[mariootsi in reply to Southside25]

Interesting what the pharmacist said. I'm going to talk to my onc because I am having platelet issues. My palliative care doc gave me wheatgrass powder. It seems to be helping. But still if a lower dose is better for more days that sounds good.

Marianne

[Purple60]

I agree with other posters. I just reached 6 months on Ibrance/letrozole combination. It has been a long road trying to work through side effects and small sinus infections etc. I am happy though I stuck with it. In my experience the first 4 months were rough and then things started to get better. Yes fatigue an issue but it has improved in the last month or so. I definitely listen to my body and rest when I need it. In fact, I scheduled a rest from 2-4PM almost every day. I am back working full time now, but have a schedule that I can manage. I can work from home when needed and take my rest period and pick up my work afterwards. I don’t know your situation but would try to encourage you to speak with your onc and restart your meds. I found out that side effects CAN be managed. It means more meds sometimes but they do help. Please hang in there!

[mariootsi]

It is overwhelming sometimes but I find that somehow these feelings will pass and we get our " control" back. Deep breathing, prayer, meditation, positive thinking and last but not least----- xanax! Marianne Talk to your onc about your meds. I find depression and anxiety are side effects also. Your onc may be able to perscribe something.

[ghnstuff22]

The first few months are up and down. I am on my 41st cycle and have learned that lots of water with doses and good nutrition helps tremendously. 💚

[SeattleMom]

Hi, Kim! I felt just like you at about that same point in my Ibrance/Letrozole protocol. I had my dosage of Ibrance reduced to 100 after about six months. Still have low WBC but the fatigue has lessened (I started on Ibrance in December 2017). Somehow, I do think that your body eventually acclimates to the assault of a new drug in its system.

I also had the same emotions of feeling overwhelmed, defeated, discouraged, hopeless. Again, once you wrap your head around the fact that, yes, you'll be on some form of medication for the rest of your life, you begin to move forward; and the self-pity diminishes. We have all been dealt a tough hand, but life can still be beautiful. And research into not just the treatment but also the management of side effects makes this road less challenging as you move forward.

God bless you, Kim, and may your days brighten. They will be longer and sunnier soon! Hang in there! Love to you, Linda XXOO

[Candyfloss68]

Im on month four week three of palbociclib/Ibrance and Letrozole plus a monthly estrogen elephant dart they give me in my tummy. Not that theres much room between the bruises and small eggs caused by the daily blood thinning injections Ive had to learn to give myself. The Ibrance is clever and if its working (I'll know next week after a PET and MRI today) Im on the 125mg dose and it takes its toll on my white blood cells, but I know if they are low they will take it off me or reduce the dose. So Ive had to reduce stress (they give stress hormones to transplant patients, the hormones stop the immune system working so their bodies dont reject the organ, I didnt realise the impact of stress on my body) Not easy given the diagnosis. I went from breast cancer to 'terminal' in four weeks.

I read about a lady that was diagnosed with cancer and went home and watched films that made her laugh everyday for three months...everyday she laughed!! Three months later she saw her oncologist and he said its gone...GONE!! Ok I dont know if its true, but I collect these stories because Ive no idea what Im doing, I dont imagine anyone does. But try and do something that makes you laugh, happy.

Fresh air helps, they say the wind is the best antibiotic, I walk the dogs for an hour every day. And exercise helps, not easy!!

Food....my worse subject. Ive eaten processed food all my life, but my body needs all the help I can give it to fight this. Immune foods, mushrooms, boiled chicken bone stock and watercress...vit C....I have a berocca every day..smoothies, green tea and Matcha

And sleep when you can so your body can heal...nap if its a reward for a walk or a swim, I used to nap when I was well!!

Read things the secret, there is a section on illness, watch Bruce Lipton documentaries anything that makes you believe you can get through this, imagine the cancer shrinking and the Ibrance nibbling away at it...love that drug..enjoy taking it...I kiss mine..Its in a special box that says unicorn food!! Because we are unicorns, we are brave, special and rare beings to have to deal with this. Be proud of yourself.

I started taking mine at dinner, Id have a desert. I read somewhere fatty foods make the side effects less awful, Ive had none, Im not sure if its the cream cake I have before it!! The filtered water I drink by the litre or the fact I love this drug and what it can do for us!!

Keep going, dont fight the drug....fight the cancer!! That has to go

Lots of love

Candy x

[Hidden]

I am approaching a year on Ibrance and Letrozole and I am exhausted and not functioning at all but my last scan showed no big differences so it is working. I was on 125 and dropped to 100 after 5 months due to low netrophils. Speak to your doctor and nap when you can and try B12 in the morning maybe. I am starting CBD oil prescribed to me this week that they say will improve my exhaustion. I will let you know how it works. My depression has been at its lowest this past year but with my family and the amazing women on this site I am still here and still fighting. There is great support here so don’t be afraid to voice your needs or to vent. ❤️

[Candyfloss68 in reply to Hidden]

Hi Sarcie. I was told not to use CBD oil because it encourages oestrogen. Which for the majority of people is good it helps heal. But not for ladies with an oestrogen positive cancer it can make it grow. This information was advised by a doctor and a homeopathic person. It maybe incorrect. But I couldn’t rest reading your post.

Candy ❤️

[Hidden in reply to Candyfloss68]

FWIW, my oncologist — at well known -hospital— is fine with using CBD oil for my anxiety.

[Candyfloss68 in reply to Hidden]

That’s interesting. It was a private doctor that told me I couldn’t have it. It’s very confusing. So many different ideas and methods. And all you want to do is keep living. Thank you ❤️

[Hidden in reply to Candyfloss68]

From what I understand it actually decreases estrogen.

[Hidden in reply to Candyfloss68]

My oncologist referred me to the cannabis clinic

[M2PLFighter]

Hi Miffy,

I am on my 3rd month of Faslodex and Ibrance. I started at 125mg but in the second cycle my neutrophils dropped too low as did my red blood cells. They dropped the dosage to 100mg and I am day 3 of that. The exhaustion sucks...some days I am "Ok" with it and other days I am just sad that this is how I am feeling.

I do love the idea from Candyfloss about visualizing the pill eating your cancer...I am picture Pacman right now LOL. I also think I will have to start kissing the drug to help me resent it a bit less.

I am up and down over this whole thing but know you aren't alone...

Em