Ibrance (Palbociclib)

PatgMc

SanJF, I don't know how long you've been on Ibrance but I found the appetite varies and you may get yours back soon. In the meantime, one way to get enough calories when a plate full of food just turns your stomach is to assign yourself 100 calories an hour. I don't know if it's still in print but I remember a book called "Cooking Well for the Unwell" which had lots of good ideas.

I'm so sorry you're struggling with this and pray it gets better.

Love from PatG

Wanderingneedle

SanJF, my nurse told me that when I do eat to eat well. Small portions. Hope you feel better soon and this doesn’t last long

Amica

SanJF - I just started on Ibrance/Letrozole and have the same problem with lack of appetite. And some slight nausea. I force myself to drink Boost or Ensure, to at least get some calories and protein. Food does not hold much interest for me, but I am hoping my appetite comes back. Hoping yours comes back too.

Cure-ious

Re-posting: Here is an article from Time updating the ongoing efforts to find a way to get immunotherapy to work for MBC:

http://time.com/5415044/breast-cancer-immunology/

Chemokaze

Thank you Cure-ious - Gives me hope

Cure-ious

#MeToo! All hope is good. Waiting to hear something exciting coming out of some/any clinical trial, its been awhile!!

PatgMc

Thanks, Cure-ious. I was happy to see Judy Perkins' story included. If you guys want to friend her, she's on Facebook. It's nice to follow a real live person who has effectively been cured for 3 years with immunotherapy. I have a friend who is 5 years out from malignant melanoma after immunotherapy. She's started a whole new career instead of facing what they told her was certain death. It's all pretty exciting!

I saw my oncologist today and told him I'd like to scan in early December, then plan to take a break from Ibrance whether the scans are better or worse. Every single lab test fell in the normal range today and I'm sure he wonders why I would consider a break but he didn't argue with me. The best explanation I can give is that I just want to feel like a normal person for a while, at least a couple of months. The nausea and indigestion are not terrible and are fairly manageable but still life-limiting. We'll see how brave and bold I am when November comes! My port worked again today which was a beautiful blessing.

In the meantime, I'm working on some art pieces for a gallery show in December. One is an early version of a Ferris Wheel with crash test dummies eating Fair Food....fun!

Have a great Tuesday! I'll be quanked for a few days from today's XGeva shot!

Love from PatGMc

skyfly

PatgMc,


Are you doing hormone therapy and chemo at once (I thought that’s what ports are for)? I’m sure that’s very tough on your body.

My mom’s oncologist suggested hormone therapy first and when I asked if combining it with chemo would be more effective he shot down the idea.

SanJF

Tha nks lovelies for the support...

Ami a, Patrick and wanderingneedle.... Tight hug!!!

Sure I will try to find it out online that print...

Wish and pray all the best for you people too!!!

PatgMc

skyfly, I got the port for chemo in 2012 and never had it removed. I'm a tough stick so it's nice to have for blood draws and I've told them they'll have to chase me down to take it out! I hope your mom is doing well.

Love from PatG

PatgMc

"Cooking Well for the Unwell" on Amazon. Very low prices for the used copies but it's also available new on Prime.

https://www.amazon.com/gp/offer-listing/0688155588...=tmm_pap_used_olp_sr?ie=UTF8&condition=used&qid=1539066366&sr=8-1

Grannax2

Joyner you can see my shoes in this one

SanJF

Thanks patG fir the link...

Have any had gagging cough with lung mets and how to deal with that?

Asking for my mom aswel... She was on XELODA and then cycle 1on ribocyclib...

airlinegal

When I saw my Onc a few days ago, I asked about immunotherapy for MBC. She said there is a trial starting now for it. Let's get our fingers crosse

holmes13

Penny that is great news! I'm glad that you have someone that will give you a little sneak!

Penny-78

Holmes13 thansk -- me too!

Grannax you are luminous!

Pat let's talk about that in November! Your call of course but we all love you -- sounds scary!

jaycee49

Pat, I appreciate your position. I'm thinking of taking a month off soon. Haven't done that in a while. I don't suffer your SE's, though. I could never put up with that.

PatgMc

Penny, thanks for your concern. And thank you, jaycee.

I was off Ibrance for about 7 weeks back in the winter when I had the flu and pneumonia, then switched to 75mg and my scan in early June was still great. This November scan will be a test of how well the 3 weeks on/2 weeks off of 75mg is working. I'm willing to play with this a bit to improve my quality of life as I have become pretty much stuck at home. I know we have rule followers here and they're wonderful; then we have nutheads like me who decide to live a little closer to the edge! We'll see what November brings!

Love to all of you from PatGMc

Penny-78

Pat I didn't realize you were struggling that that degree with SEs. I'd assumed you were a bundle of energy out and about. Hope you didn't mind my outburst of convern above -- it is borne totally out of love and friendship.

PatgMc

Not to worry, Penny. I could feel your concern. It's not that I'm nauseous all the time; it's that I don't get a lot of warning when I have to throw up. I sometimes even throw up with an empty stomach which is pretty weird. I'm not one to get out with a throw-up bag and I don't like the side effects of the nausea meds so I'm just getting lots of reading done and some artwork. (WTMI: The good news is that I had Adriamyacin in 1994 without Zofran and I learned what throwing up was really like. None of this is that bad!) My husband would laugh about that "bundle of energy" comment!

Love from PatGMc

JoynerL

The rule-follower will hold her peace.

Grannax, gorgeous...and great posture to boot! Love the photo and the shoes!

I met with my MO yesterday for my regular follow up. I asked him about immunotherapy in general terms. Essentially, he said that BC is the most studied cancer there is right now, but it's lagging behind in immunotherapy. He said that this was mainly because there are so many treatment options now available for BC that it's hard to take a patient off of something which is working in order to try an immunotherapy approach. I'm sure that I'm vastly over-simplifying. He told me that were I to progress, the first thing he would do is check the immunotherapy trials to see if there was something we should consider before choosing the next drug regimen option. He's always very candid and matter of fact, which I appreciate. He's not a sugar-coater, so when he gives me positive news, I know it's real.

JoynerL

Interesting new article from Stanford:

Invasive Breast Cancers Punch Tunnels into Neighboring Tissues

Husband11

Has anyone experienced rashes and itching on Palbo plus letrozole? My wife is constantly itchy, all over. Her skin, her eyes, in her ears. She has eczema like red patched on her back and belly. She's seen three dermatologists, and nothing they give her seems to work very well. Wondering if its due to the drugs?

IntoLight

Husband, yes, I am itchy all over most of the time. Sometimes it is worse than others. My patches are usually small (eraser size). Oddly, some areas have healed well over time, and people have commented lately on how good my skin looks (face) although I don't see it. I am a California girl with skin damage from past years of sun abuse although I am religious about sunscreen and hats now. My dermatologist told me to use cortisone cream on the extra itchy patches which works for me.

Penny-78

Joyner, thanks for the link. Interesting piece for sure. Not sure of everyone saw this article too but there are certainly hopeful insights:

https://medicalxpress.com/news/2018-10-markey-brea...

Husband, I've had some trouble off and on with itches and rashes but they've tended to disappear quickly on their own. Sorry I can't be of more help.

Pat, thank you for understanding. :-)

Seaway

SanJF;

Yes I have that cough. I cough regularly but sometimes it is so powerful and unremitting that I through up. I have mets to the lungs. I use cough drops regularly and don't know what else to do and just put up with it as I expect it to improve once Ibrance/Letrozole does it's thing.

Cathy

KatyK

Joyner, I also recently discussed immunotherapy with a MO at Huntsman in SLC. Right now immunotherapy treatment is more effective for types of cancer where there are lots of mutations (lungcancer being one)and most bc is not like that. I hope we see effective immunotherapy someday for bc and some cure but the best we can expect right now is to bump along on one drug to the next ( for stage IV) and hope they keep coming up with a new one.

Husband- my understanding is that the Ibrance rash is common but also “good” in that it means your immune system is responding. I use a nice homemade oatmeal soap bar (my sis got it in VT) and it really helps me, rash doesn’t go away but it’s soothing and less itching.

It may be time for me to change up my treatment. I’ve been on Ibrance/letrozole for a little over a year and it’s been effective and I have felt quite good but the TM is on an upward trend. Will have the TM test next week and depending on those results decide the next step. Maybe switch to Faslodex? I really hate this......

PatgMc

Husband, I've had the itchy rashes off and on for my two years on Ibrance. For most of a year I itched above my ankles and on the tops of my feet. I finally applied Cortisone 10 cream and everything cleared up except one spot on the top of my left foot less than the size of a dime. I hope your wife gets some relief.

Love from PatGMc

Amica

Husband11

I have just started on Ibrance/Letrozole, and after about 10 days a rash of tiny red pinprick dots appeared all over my legs and midriff. It has lessened in some spots, but mostly remains. Fortunately it does not itch. I have rosacea on my face normally, and that also flared up. The skin on my face is somewhat itchy and slightly burning, like I have a sunburn only I don't. And my scalp is sore. So yes, I noticed skin reactions. So far I have not done anything except moisturize a bit more. I use the solid Dove bar for Sensitive Skin.

Leapfrog

SanJF....I have the same problem. I think it's fine to eat anything you feel you can eat, even if it's not exactly a balanced diet when we feel like this or our weight starts dropping. Mine started dropping again last week because I just couldn't face anything so I nibble at things whenever possible. Don't try to eat big meals. It's straight out impossible and you will probably lose it anyway. I drink fruit juices, very small volume smoothies - usually half a banana, a few frozen blueberries and some almond milk but keep it small or you'll lose it and go off it for months. That's what happened to me, anyway. I also eat energy bars. I'm in Australia so I don't know what's available where you are but I like Bounce Balls. They're small and full of protein and I can just nibble a bit whenever I feel I can. I force down a pancake at breakfast time because if I don't I'll get hypoglycaemic. I hardly eat any of the things I used to, I just can't face them. Fruit can be good. My sister made me some cupcakes but they're still in the freezer. My oncologist told me to eat chocolate to put weight on but I can't even face my favourites. Don't force yourself, just try to keep something handy to nibble on. I used to be a very healthy eater and made nut butters and all sorts of healthy food but I just can't do it now. Nuts are also good if your mouth is in good shape. So, I'd say little and often. I hope this helps.