Immunatherapy - Palbociclib

Hi Wino, how are you doing.  I hope you are doing okay and coping with palociclib drug.  I started mind last Wednesday and am doing okay - tempting fate I hope not.  Felt a bit of pain around the breast area and stinging nettle feeling.  However, if this is what it is going to be like then I will cope.  Get bloods done next week for white cells to see how they are doing so will please when that is done. 

I get a scan in August (jumping ahead I know) so hopefully there is positive news there.  For the past few weeks my cough has improved so much so hoping the radiotherapy has helped there.  

Take me care and keep me posted on how you are doing 

xx

Hi Jodieb,  Well i have nearly finished my first month of palociclib and i still feel great, i don,t want to speak to soon like you i am worried it can all go down hill. I had my bloods done yesterday and the nurse phoned today but she did not say anything about white blood cells and i forgot to ask. She asked how i felt and did i have any pins and needles, or a rash i answered no to all and said i have just done a 5 mile walk and she seemed surprised by that.I am going to see a radiotherapy consultant next week so it looks like i might be having some of that soon i will soon find out ha ha.Glad to hear your cough has improved i hope it continues.I think i will be having a 3 month scan to see how i am doing on this drug it will probably be towards the end of August these scans make us all very anxious i dread them like many on here do lets hope its good news for both of us.You take care too and keep me posted xx

That is brilliant news   Well done you   Take care and keep me posted xx

Hi Jodieb there was one thing i forgot to mention my hair is thinning its kinda strange there just seem to be singular hairs falling out like one or two at a time i hope it does not all fall out my scalp is kind of itchy so i will have to wait and see Take care xxx

Hi Guys!

Only just found this thread but my own experience is scarily similar. Diagnosed with MBC last August (2019) after a few months grappling with self-diagnosed RSI in my upper back from sitting at the dining room table on the laptop. When I finally got a proper diagnosis it seems I had MBC in spine, liver and lungs. I was immediately put into a spinal brace and surgery fused my thoracic vertebrae from T1 to T6. So like another lady on here, I was fortunate not to have had serious spinal damage.

Anyway, I was immediately put on anastrozole while the spinal team was stabilising things, subsequently changed to letrozole and palbociclib added as soon as possible from January 2020 along with denosumab which is now quarterly. I have to say that currently I’m in good shape. My latest scan showed the lung mets have gone and I now have “stable disease”.

 I experienced the hot flushes but they have settled down and occasionally I get a very mild one, I had hair thinning (very depressing scooping my hair out of the shower tray) but that has also stopped now. I get joint pain - particularly in my hands and sometimes wake up with claws until I can tease my fingers open again! I’m also very stiff in all joints particularly if I’ve been in one position for a while. I look just like a little old lady!

 I wanted to let the “newbies” know that there is light at the end of the tunnel in regards to the side effects of treatment and to ask the group a question:

Does anyone have any suggestions in regards to weight gain?

My weight has been creeping up over the years but my recent serious diet attempt was pathetic - I lost 7 pounds over two months.

Any advice gratefully received!

Many thanks  

Hi  Banksy39          Wow we are alike i am the other lady with the spine cancer in T8 T9  mine was cemented but yours seems to have been more serious but at the end of the day we were so lucky not to have had serious spinal damage than god for good doctors.Really good news about your scan " stable disease " the news we all want to hear.Yes my hair is thinning but i am lucky at the moment thats the only side effect, i have heard of others with joint pain and stiffness lets hope its eases of in time. As for the diet question this is also giving me some grief, before diagnosis i lost 4 stone with diet and exercise, i know i can not do the exercise due to my back problems ( it still aches ) but i have been eating only healthy foods and have put on 1 stone in 3 months this is very upsetting,the  only thing i have found out from my doctors is that palbociclib and letrozole can increase weight  gain and i was told by my oncologist not to go on a diet but to just eat healthy so i am doing my best.nice to have a chat Keep Well and safe x

Thanks Wino!

Fortunately I’m still on shed loads of pain killers so my back doesn’t hurt but as I said previously, it’s the weight gain getting me down. I, like you, do eat healthily and I walk a couple of miles roughly 5 times a week (which is new for me). My next consultation is on Tuesday so I’ll raise it again.

Let you know if there’s anything helpful to report!

Stay well and safe xx

Hi Everyon

I am new to this so still trying to find my way around. I was diagnosed at Christmas with Mets due to my back fracturing and like many others I was being treated to muscle pain as I sit at a computer. My cancer is on my T3 and 7th rib and possible lungs but not definate. Treatment has been Leteozole but it crippled my hands then Megace which affected my knees to the point I couldnt get down the stairs or walk very far. I also put.pn a lot of weight so as of last Saturday I am now on  Exemestane which seems ok but I did start a period yesterday which is strange asy last.one was last October amd I had a couple of injections amd I am now 58

 Last CT showed everything was stable and at the moment I am only on hormone treatment. I had radiotherapy on my spine but other than that nothing else. 

You always feel anxious as at the beginning all I had was a lumpectomy with radio and told I had just had a brush with cancer and had 4 years almost.to the day of Tamaxofan which obviously didnt work.

Hope everyone is well and staying safe.

Hi Bullfrog

Sorry to hear you’ve had bad reactions to your drugs and fingers crossed the latest one will not affect you so much. 
My secondaries are on a rib and in the liver. I take Leteozole as well and up to now it seems to suit me . I’ve been taking it 2 1/2,years . I have another drug too palbociclib and a zometa drip every three months for my bones.  The treatments do vary as do individuals reactions to them . 
Thinking of you 

Blank 

Hi 

I wasn't able to have that because I couldn't tolorate Letrozole so did not get palbocilib. I have a bone injection every three months. So at the.moment I am only getting hormone treatment and loads of.pain relief. But so far it is.stable.

Hope you are ok and enjoying the weather x