Palbociclib trial ladies(how you doing)

Hello @JaneyB welcome, this thread is in the general forum and is therefore not private.

Oh @Unicornkisses, sending you a big bear hug  <3  Kate xox

Hi Ladies
I wondered if you wouldn't mind if I joined your chat?
I am from Melbourne, but living overseas at the moment.
I am on my 19th cycle of Palbociclib and Letrozole and can SO relate to so many of your comments.  
Also can I ask is this thread public?
Thanks

@LMK74 thank you.
just got told this morning that I have to take a week off the Palbo as the neutrophils are too low. Damn it I was going so well. They were okay last round. This is the second time this has happened on the original dose, so chances are they will have to reduce it this time?
another blood test next Friday and we will go from there.
I feel so well otherwise, the 2 TaiChi classes, one Encore class and the physio exercise class each week are helping me feel stronger and more energetic.
I am easily making the 10,000 steps required by my new Fitbit each day. YAY!
So the low neutrophils don't seem to affect anything else.
Cooler weather will probably help with the hot flushes. (Hoping)

@Unicornkisses, so glad to hear from you . Those hot flushes sound vicious and I hope you can find something that helps with them. It sounds like you're having a rough time atm. None of this is fun that's for sure.

@KatyJoy, it probably won't mean 10 years of Zoladex as menopause might hit around 50 and you can swap the sanitary items for the incontinence pads!
Bitter? Me? never!
I am 58 and have been prone to UTIs most of my life, so it is no surprise that I get them now, and the severity of them is probably linked to the low immunity with the low neutrophils, so that is the Palbociclib effect.
I think the fact that I am getting them now is due more to the dry pubic area and the complications that go with that, and that is partly natural menopause and partly the Femara.
My Oncologist mentioned that the first two to three months on it are usually the worst, and I am starting to feel a bit more human, but I am holding him to that and will be discussing the hot flushes on my next visit.
I also have the complicating problem of the incontinence medication of which the side effects are overheating, reduced sweating and dry mouth and skin - isn't life fun?!

So nice to be in touch with others on the same treatment path. Just had my first zoladex. Thank goodness for Emla! Have follow-up for lower back pain in two weeks, at which time my oncol will investigate further if pain hasn't gone, to eliminate anything sinister. He's told me not to worry (haha) it's probably not!

Hello @Unicornkisses sending you a private message

Hi Ladies, I have been offline for a while. Lots going on in life at the moment.
regarding the trial.
I am in month 4 of Palbociclib and have just gone from fortnightly to monthly blood tests.
I am also in month 5 of Letrazole (Femara) 
The Palbo really hasn't caused me too much grief. I have had one incidence where the neutrophils were too low and I had to delay a week before starting the next round, and they are sitting just above the cut off level most of the time.
I just find I have to be extra careful with anything that involves skin breakage, such as dental work. My tooth root removal for bridge work became nastily infected. I have also had a fairly savage UTI, but then I am prone to them, so always have treatment on hand, and bottles for samples before I take the first tablet.
The horrid side effects are mostly from the Femara, I think.
The tight sore knees eased after the third month, and I only notice them now if I have done too much heavy work in the garden or with the horse. 
The hot flushes are another story. If they don't ease I am going to have to investigate alternatives as they are really interfering with life. Some nearly have me passing out.maybe winter will be better (I hope). The after effects, dizzy head, inability to focus, nausea, anxiety, weakness, can take up to half an hour to pass in a bad case. Icepacks on the head and neck help.
I wish I could give just one to my (male) Oncologist so he could understand what I am going through with them.
I can easily have 10 or more on a bad day.
The fatigue is slowly easing. As long as I don't overdo it during the day (who me?) I can function normally at night, though I need to be in bed by 10.30. Sleep is broken, hot and cold all night, but at least I go back to sleep each time, mostly.
Dry? I cannot drink enough. During a hot flush I can down a 600ml bottle in two gulps. 
But as I said, I think it is mostly due to the Femara.
I found the constant blood tests and clinic visits a bit of a pain at first, now they are more spaced out I think I am okay with them. Having to keep a diary of the tablets is a bit of a pest, but I now just write them in my diary on the kitchen bench and transfer into the trial sheet at the end of the course. Having to remember to take the damn tablets is also a drag, but I am getting into a better routine now. I guess it will become second nature soon.
I am happy that the specialists visits have spaced out more too.
I see the surgeon after my next mammogram and ultrasound in June, my first after diagnosis and now only my left breast.
I have no faith at all that they will pick up everything, after my experience with my right breast, but we will see. She is also ultrasounding my right axilla where all the lymph nodes were removed as it is filling it with fluid constantly and I have to be taped by the lymphodema physio.
I see the plastic surgeon at the end of April re reconstruction, I will probably have the left breast MRId before going ahead with DIEP flap, just to make sure it doesn't have to come off too.

I am finding I don't cope well with stress any more and my brain just freezes, but the head is clearing a little from the fog, recall of names and events is still slow but getting a little better if I relax and take it slowly. Crossword puzzles are still a challenge, but again, getting a little better. I am back working half days, which is as much as I can manage before I get too tired, but I can now actually come upstairs I work from home, and after a sit down can do housework type stuff, which I couldn't do before.
I finished treatment in November last year, so it is still early days I guess.
Thank you for checking in with me, I will catch up with all your stories when I get a minute.

@KatyJoy, great. I remember asking someone how to do it too. I'm so useless with technology lol.