Palbociclib trial ladies(how you doing)

@Molly001, glad to hear you are doing ok on the trial. 

Hi @LMK74, still on the trial and doing ok with it. I've not really been on the network for a few months as my personal life is a bit full-on right now. I'd like to go back to work, I'd like to do a regular exercise program. I think this would make a huge difference. It's just a matter of finding the time and energy to make these changes! I'm mentally ready to stop being in the post-treatment zone now. Just need the old body to jump on board with that!! Mostly I can just get a bit down about how different I look and feel. So much fatter, older, weaker and tireder. I don't really know if the palbo is holding me back a bit, but I want to finish the trial. So, I guess, like you, I'm finding it very tollerable but less than ideal. Thanks for thinking of me!

@Molly001, how are you doing. I haven't seen you here in awhile. I hope all is well.

Hi @Salpal, I started this thread for those of us on this trial. I have been on it since December last year along with arimadex and zoladex injection monthly as I was pre menopausal prior to treatment. I'm tolerating it pretty well. I have stiff joints from arimadex and my memory is appalling but not sure if that's lasting chemo effects or what. I don't seem to have any side effects from the palbociclib and am still on 125mg. Bloods have been fine so far . Good luck with what you decide.

@Unicornkisses
Brain too tired!
Refined sugar and carbs - not the other way around :) 

@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).

 

@ JaneyB, thank you for your insights too, from a longer term user it is helpful.
I am exercising to get the weight under control for several reasons, 
less strain on the joints, and hopefully keeping them moving lessens the risk of joint pain with the Letrazole, it seems to work.
I was told that fat cells produce oestrogen and if I have to be on Letrazole and put up with the side effects, I can't see the point in sabotaging the benefits it is supposed to produce.
Less weight equals lower risk of recurrence, not sure I know how that works, but I am willing to test the theory.
I also exercise to combat the loss of muscle and strength due to the chemo and forced inactivity during 12 months of treatment. I ride a horse, so I need to be fit and agile.
Exercise improves my breathing. Radiation has damaged part of my right lung and the inactivity during hospitalisation, for two operations and on two occasions during chemotherapy, resulted in collapsed portions of my lungs and frightened the bejesus out of me. The Oncologist said that exercise would help with that.
I mostly exercise in a group situation which helps to keep me motivated and also gives me a support group outing at the same time. The more I go to these exercise groups, the easier it is for me to stay focused on healthy eating. Otherwise I tend to slip back into old habits.
It also helps hugely with the mood swings and general depression that can descend on me at times.
plus it means I can eat some of the things I enjoy and not have the weight pile back on. 

@Unicornkisses
Congratulations on your "all clear".
Wonderful news for you.  Must make the side effects more bearable.  

Hi Ladies

I am so appreciative of being able to read about your experiences.  I don't have a cancer support network in my situation and was one of the first women in the country I live, to start taking Palbo.  

I hope you don't mind me sharing my experiences with you.  I hope it gives you all some additional things to consider and most of all hope.  I am in to my 20th cycle of Palbociclib and Letrozole, used as first line of drug treatment in my case.  I had heaps of tumors and am now down to one small one in my sternum, which we have just zapped the blazers out of.  Fingers crossed for my next major scans etc.  I have had minimal surgery and no chemotherapy as yet.  I've continued to work full time and care for my family in a foreign country.  We are very, very lucky to have this drug available to us.  My hope is that you all get great results from it.  

Here is just a little of my experience with the side effects:

Aches and pains - oh yes! 
During the winter I sleep cocooned in a very snuggly, velvet like blanket.  Seems to just take the edge off the pain and puts me to sleep much quicker.  Not sure what to replace it with now our weather is warming up over here.  
I have a body pillow and often at night cuddle that with my arms and legs, it really eases the bone pains and general aches - particularly the pain in the sternum when I want to sleep on my side. 
 2 months ago my oncologist asked if I had been taking the pain meds she had prescribed - I only had when it had been bad.  She suggested trial the regularly twice a day.  What a difference.  I actually didn't realize how much pain I had been living with until it was gone.  In the scheme of what I am putting in my body drug wise, I have decided that two pain meds a day are well worth wrapping my head around.  

Flushes, energy and general feelings of well-being.
I had reduced my sugar intake prior to getting my diagnosis, just being healthier, more educated and results of living in a different country.
Since diagnosis I have gone sugar free, gluten free, low carbs and alcohol free.  When I choose to eat sugar or carbs I feel very unwell.  And much more tired.  Green tea, also helps enormously and remembering to drink LOTS of water.  I'm not vegetarian, but am reducing my meat intake - done some research and curious if it will help me manage better.  

Mouth ulcers - hate those suckers!
My oncologist gave me this great mouth wash and it helps enormously, they normally lasts about 4 days and it is super hard to eat or drink.  Very uncomfortable to talk too. This has eased as the months have gone on, and now reappear occasionally.  I can almost predict which days of the monthly cycle they are going to appear (if they decide to).

Energy and feeling like crap
I work full time and have a busy family life. 
Most days I have to really push through to get to work.  But once there and I get busy and involved, the pains and feeling bad seem to diminish.  Keeping busy and really highly occupied have helped me a great deal.  If I relax when I get home I find if I just sit and relax my body and mind, rather than having a lay down (so tempting) I actually have a much better day.  Having a big rest on the weekend is good, but it does make me feel low and I can't get past the feelings of tiredness even after the rest.  It is interesting how bad I feel after doing serious resting.   

Dizziness and feeling faint - nothing really works.  I just walk close to walls most of the time.  And my teens have become used to me being more cosy with them when we are out and about :)

During the 20 months I have had to postpone the double dose, by one week, 3 times due to low neutrophils.  Often my immune system is directly related to my lifestyle choices - particularly food.  My oncologist is really good at negotiating this with me.  I suspect if I was on the trial I would have been made to postpone more times than 3.  

I'd love to hear about any other things that are working for you all.  I can see that many of you are exercising a lot.  Are you finding it makes a difference to your bodies and the side effects or mainly for the health of your mind?  

Wishing you all the very best of things that are good in life.

Hi Ladies, how are you all progressing?
I have been very quiet of late, trying to simpify my life but for some reason I seem to be busier than before???
I am onto the 7th cycle of Palbo. I have been dropped to 100mg due to recurrent low neutrophils. I wasn't surprised, I had the same issue on Chemo and was on Neulasta for the whole treatment.

I am now on 3 monthly reviews and have sorted out the side effects to some degree.
The hot flushes have eased in severity with the cooler weather. HALLELUYAH!
BUT the joint stiffness and pain have increased markedly. SIGH.
I wasn't really having much problem with that in the beginning, just a surge of it in my knees in the first three cycles and then it eased to be barely noticeable. 
My hands and wrists are also suffering.

I started having finger pain and tingling at the end of cycle 5.
Not all the time and it rotated around my fingers each day. It eased off in the week off, but is creeping back again now I am back on the Palbo, week 2. 
I have reported it and will monitor it. I can live with it as it is mild if it eases off each break, but otherwise I think that would be a reason I quit if it increases.

A lot of the hot flushes and awful nausea I have identified are very much linked to stress.
Even the mildest stress sets them off. I guess it helps to know, not that I can do much about it, though.
And coffee also brings them on. I am going to have to tough that one out, I am not giving up my coffee, it is the one thing that makes getting out of bed appealing.

I am sorry to see on the news that Palbo hasn't been put on the PBS due to lack of agreement on cost but so good to see that the other one has got approval. I was a little alarmed to see that the Palbo is $5,000 a month, it did make me value it a little more.

I am currently going to TaiChi, Music Therapy and Exercise with the Physiotherapists at Wyong Hospital, all through the Central Coast CanCare program. I am determined to lose a lot of weight for my reconstruction surgery at the end of the year.
Today I managed to jog on the mini trampoline, I haven't jogged in years!

I had my first mammogram, 3D tomography and ultrasound following my diagnosis.
All clear.
I have fatty lumps down my mid sternum area and quite a bit of pain to touch there, which the Onc thinks may be either arthritis in my bones from the Letrazole or possibly a side effect of the Palbo, it is listed as one of the side effects. As long as it isn't something serious, I can live with it.

I hope everyone else is having minimal side effects too