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The Artist

The-artist profile image
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How do you all feel on your 7 days off Ibrance? I’m on my 5 th round and each time when I’m off for the 7 days I still do not feel that great. I’m still tired and I don’t get a lot done.

Also does anyone else’s scalp burn and head really sore? That also takes until the 4 th day off. I color my hair and wondering if I should stop it.

Thank you

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The-artist
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24 Replies

I don’t want to alarm you but ask your doctor to check for scalp metastasis. I noticed my scalp was very tender and it turns out I have scalp metastasis. It doesn’t change my treatment and we caught it around d the same time they first found the bone metastasis. The ibrance is keeping it in check and the small hair loss I noticed had recovered. I can still feel a slight “dent” in that location. In addition to seeing my onc, I have regular checkups with my dermatologist who is the one who found it. As for feeling fatigued, I too don’t notice much of a difference in the off week.

The-artist profile image
The-artist in reply to

Wouldn't that have shown up on the MRI or Pet Scan? Also after 4 days off all burning and soreness leaves. Is this what yours did?

in reply toThe-artist

They scanned my lungs etc but not my scalp. I too thought it was related to hair coloring. I showed it to my onc who suggested I have dermatologist check it out. Dermatologist shaved some skin and sent it for confirming biopsy. Remember your onc is not a skin doctor so the dermatologist is a good way to go. First, I noticed the tenderness, then a small hair loss in that spot about the size of a dime. Then it felt like a small divot. Turns out the scalp was acting up the same time the bone metastasis kicked in. Ibrance addresses it all.

in reply to

Also now they include my scalp when they do scans. Good luck.

The-artist profile image
The-artist in reply toThe-artist

Does your scalp stop burning on your 7 days off period? Mine does so I just thought it was the Ibrance releasing from my body. As a hairdresser I know meds release through the scalp that's why sometimes your perms wont take.

Nursewithcancer profile image
Nursewithcancer in reply toThe-artist

If you had scalp nets it would show up on the pet scan. Are you having hair loss or thining? That can cause scalp to be sensitive.

The-artist profile image
The-artist in reply toNursewithcancer

Thank you

Barbteeth profile image
Barbteeth

I don’t feel any different on week offThe only thing that makes my pain worse for a few days is after the denosumab injection..and I could be imagining this or it could be coincidence

I’m not especially tired on these meds...if I am then I have an iron infusion to boost my haemaglobin

Barb xx

Ppppopp profile image
Ppppopp

Hey, I haven’t had burning on my scarf but , am getting little cuts.

I too am thinking it’s all the meds coming out of my scalp.

SpongebobMom profile image
SpongebobMom

on my off week, especially days 5-7 i have major leg pain, it's more uncomfortable than anything, but annoying all the same. my bones & joints ache & I can't stay in any one position for too long.

MMMP profile image
MMMP in reply toSpongebobMom

Some thing happened to me!! My knees were killing me- got a muscle relaxer and it helped- once back on drug no issues with joints. Have 4 days left on this cycle!!!! Aleast now I know what it is and what to do!!

The-artist profile image
The-artist

I have a similar complaint. My joints feel swollen and stiff, my knees mostly. My dr said to get Glucosamine and it does help.

The-artist profile image
The-artist in reply toThe-artist

The Glusosamine is a vitamins. I don’t really want to take a muscle relaxer because I’m tired of meds

Thrifty51 profile image
Thrifty51

Just had hi-lites and lo-lites yesterday. My scalp does the same thing as yours but gets better toward the end of the seven days off. I have hair thinning and the texture has changed a little but still have most of it. I initially was diagnosed with mets to the scalp but have been told that they are gone now by the doc and from the pet scan.

Gwennie123 profile image
Gwennie123

I don’t color my hair and my scalp hurts. Very sensitive.

Sunnydaz profile image
Sunnydaz

I color my hair at the end of the week off. I think it’s from a dry scalp.

Robin

mariootsi profile image
mariootsi

I don't feel great on my days off from Ibrance.

kearnan profile image
kearnan in reply tomariootsi

My first cycle of Ibrance the first two weeks were fine (this was my first treatment after diagnosis) and I thought I can handle this. Then my third week came and I woke up one day and felt like somebody had hit me with a bat during the night. I could barely get out of bed. I never experienced chemo or radiation so I had no idea what that kind of fatigue felt like. So I was eager for my week off to come so that I could get some things done. It was awful. First it was last year about this time so hot as hell in NY. I had shut off my central air and I could feel how stuff my apt. was and yet I was freezing. I had two robes on and then went to bed and had three blankets on and I was still shivering. I knew that was not normal. I did not even have the energy to take a shower. That whole week was a horror. I thought okay, its the first time your body is experienced a heavy duty med, but then the second week off was just as bad. I felt like a drug addict....I wanted to start taking my Ibrance two days early because I could not stand how I felt off it, but I didn't. Third week off was just as bad. Yet some women on forum boards said they felt no difference on their week off. I am now off the Ibrance (after three cycles) and on verzenio.

Red71 profile image
Red71

I’m more tired on my days off Ibrance than when I’m on it. I color my hair and haven’t had any scalp problems. I don’t time my coloring days with any special point in my treatment, I just get it done when it needs it.

Sailfree profile image
Sailfree

Each time I’m off Ibrance it’s different. I believe it’s related to my WBC. If I go lower than 1.7 in the 21 day cycle I feel dizzy and tired until my count increases, usually 5 to 6 days off drug and then you start again!!

nstonerocks profile image
nstonerocks in reply toSailfree

Same here. No rhyme or reason I can find. Some weeks are fine, sometimes I'm sooo tired. But that can happen on other weeks too. I had extreme exhaustion 2 months ago. I don't know how I went to work, but feel better now.

The-artist profile image
The-artist

I'm going to dr tomorrow and I'm going to talk to him about having 2 weeks off in between instead of 7.

Maludagui profile image
Maludagui

Hi 💕🌺

I have noticed that my scalp hurts and it becomes super sensitive. To avoid this I wash my hair every day with anti-fall shampoo and then rinse I like the Tressemme Professional brand. and it helps me a lot.

I also noticed that when I was given Xgeva and Falsodex injections at the beginning of the week, I went through with many pains.

Another detail that I have observed is that the cycle five until now has been for the one that has given me the most side effects. 💕🌺🌹

The-artist profile image
The-artist in reply toMaludagui

I will not take shots the Xgeva. I twitches and jerked to much so I told him I wouldn’t take them anymore. I just started building up with my calcium vitamins.

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