Just wondering how you other ladies on this drug are faring. I'm on the maximum dose and seem to be doing quite well. I'm on cycle4 and have had were side effects. Hopefully you are all going well.

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.

Hi @KatyJoy, fatigue is ongoing for me too, although my oncologist thinks I should be back to normal lol. If only they could be in the bc seat to see how it really is. All my bloods have remained in normal ranges so far. They do dip a bit week 3 but fine by next cycle. I'm on three monthly visits also. I do go in monthly for my zoladex injection though. Touch wood I haven't had any urinary tract infections. I'm 44 in a couple of weeks. Not sure if age may be a factor for u.t. infection, probably not. I know @Molly001 and @Unicornkisses we're on this trial also so hopefully they can tell us how they are finding it.I thought it would be good to start a post on this so we can all swap info on how we are doing. It's nice to hear from someone else on the same trial.

@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 Thanks so much for the reply.The radiation effects on the lung are scary. I also had mets removed from my diaphragm too. So the breathing is at times tricky. At work I do a gazillion stairs a day and that is great incidental exercise. It really makes a huge difference to my breathing and I can tell when on holidays the significant difference.I hadn't thought about the fat cells - oestrogen connection. Thanks for sharing - did a quick read and there is so much evidence to support this. I had done extensive reading on sugar and refined carbs and cancer in general.When I decided to cut these two things out of my diet, my excess weight fell off me. I've not been as diligent of late and the mid section bulges are creeping back, I am starting to feel unwell and I'm not sure if it is connected but my cancer marker is slowly heading increasing. I really appreciate your reply. It has made me reflect and make a new resolve to get back to the way of eating that I know is best for me. To keep this disease at bay for as long as possible. Glad that you have found a way to keep motivated to make changes to your life that will make you as well as possible. It feels so important to have 'control' and to be doing what we can to combat this (other than just the meds, ops, zapping etc).

@LMK74 Yes! It works! Thanks for that! It’s taken me ages to work that out, your awesome! Thankyou

Palbociclib trial ladies(how you doing)

33 Replies

KatyJoy
Member
8 years ago
Hi @LMK74, I was 43 in October, so we’re almost the same age! I am based in the eastern suburbs of Melbourne and have my zoladex through my local hospital where I have had the rest of my treatment, but I have to go into St Vincents hospital in the city for the Pallas trial, which is a bit of a pain, but my oncologist was very keen for me to do it. I also participated in the eliminate trial during chemo, which meant I had letrazole with my chemo pre surgery. It’s made it a bit difficult to know what side effects are caused by what because I’ve been on them all together. Lol! When you said your onc thinks you should be back to normal by now! I get frustrated because I so want to be back to normal but I’m just not. I think its hard for anyone who hasn’t experienced this themselves to understand
LMK74
Member
8 years ago
Hi @KatyJoy, fatigue is ongoing for me too, although my oncologist thinks I should be back to normal lol. If only they could be in the bc seat to see how it really is. All my bloods have remained in normal ranges so far. They do dip a bit week 3 but fine by next cycle. I'm on three monthly visits also. I do go in monthly for my zoladex injection though. Touch wood I haven't had any urinary tract infections. I'm 44 in a couple of weeks. Not sure if age may be a factor for u.t. infection, probably not.
I know @Molly001 and @Unicornkisses we're on this trial also so hopefully they can tell us how they are finding it.
I thought it would be good to start a post on this so we can all swap info on how we are doing. It's nice to hear from someone else on the same trial.
KatyJoy
Member
8 years ago
Hi, I am currently on cycle 7 of the Pallas trial. I was initially on 125mg for the first 4 cycles but had 2 instances of severe neutropaenia, although I felt fine and didn’t get any infections. My dose was reduced to 100mg from cycle 5 and my neutrophils have been fine since. I now only need a blood test and review every 3 months which is good. I have been feeling fine but still bothered by fatigue. I am not back to normal since my chemo, surgery and radiotherapy, but I think the fatigue gets a bit worse through the cycle of palbociclib, and then recovers a bit during the week off. Have you had any symptoms like that? My liver function was a bit off at my last review, which made me panic a bit with the thought that my dreaded cancer had returned! This has since been followed up and thank goodness everything is fine. I have also had a few urinary tract infections, but I don’t know if that’s related or not. I am interested to here from others too so thanks for posting this LMK74

Forum Discussion

Palbociclib trial ladies(how you doing)

33 Replies

Recent Discussions

Anastrozole

Letrazole what's it like to take?

Hormone treatments, tamoxifen and tendonitis

Duration of endocrine therapy in premenopausal Australian patients

Tamoxifen and dizziness

Disclaimer:

Foundation partner	Major partners