Hi

Hi Zeds welcome to the forum and so very sorry that you have not had a response as yet I imagine that your history may be fairly unique hence why maybe not many replies.

It sounds like you have through the mill with all that has happened and this must have been all very traumatic for you. I'm wondering if you may like to give the Macmillan Line a call as they have Nurses there who may be able to provide more information for you re this treatment and I'm  not sure if they offer peer to peer support for you to be able to chat with someone with the same issues but worth a try. 08088080000.

Have you had the scan results as yet or not please do keep in touch and let us know how you are doing?

Sending some hugs your way for now. xxxx

Hi, Gail, thank you for your reply x Unfortunately, my white blood cells were still too low on Monday to restart my treatment, so keeping my fingers crossed for this week. I will get the results of my CT scan on Tuesday so keeping everything crossed. 

Hi Zeds,

My story is similar to yours...diagnosed stage 2 January 2018 had a mamoplasty (half removed and remoulded) central lymph node removed told all ok then a month of radiotherapy..lesions on my liver were picked up on a scan i had but they told me they were nothing to worry about...took tamoxifen

then fast forward to early 2020 feeling generally unwell back and forward to the doctors then in July i got an xray...tumour in my chest wall..plural effusion round my lung and cancer in my liver..they drained off 6 litres of fluid no idea where it was hiding lol..had pleurodesis which has worked so far...i am on palbociclib and letrozole..second scan results yesterday..drugs are working so all good...I did start off on 125mg then had to take an extra week off then go down to 100mg which fingers crossed I am still on...my neutrophils have been really low at times too I think its quite common..mostly I forget I have cancer and love that I am still here...I hope you are well and your scan results were positive xx

Hi nik67

Thank you so much for your reply. So glad that you are doing well on the medication. I had very good results from my scan, my tumours had shrunk - so very happy with that. But I did have to have 3 weeks off the Palbociclib so a bit worried about what may have happened in those 3 weeks. I have also had to go down to 75 mg dose so hope I still get as good results when I get my next CT scan at the end of May. I like you try very hard to just live my life and be grateful that I am still here and enjoying life - even in lockdown lol. xx

Hi Zeds

That is the best news about your scan results so happy for you....
I remember when I went from 125mg to 100mg I panicked but the oncologist told me that because we are all different our bodies will all need different doses it does not mean that its working any less on your cancer than on someone on a higher dose and along with the rest of my treatment i.e letrozole and zoladex its still fighting the disease...I think we all worry and its hard not to..

I had never posted on here until I read your post ..I like alot of people read posts but didnt post myself...just looking in and reading posts I think helps to know your not alone in this and gives you a wee boost to keep going....hopefully the end is in sight re the lockdown lol...I am heading out a walk now ...stay safe it was great to hear back from you and your positive scan news xx

Hi nik67

I am so happy that you replied to my post. I too was a bit reluctant at first to post on here but thought it would be good to see if there was anyone in a similar situation to me. Thank you for your reassurance about the change in dose. I do find if anything changes I get a bit nervous - but still keeping positive. I hope you will keep in touch with your progress and wish you all the best on your journey. Hope you enjoyed your walk, I had a lovely walk this morning, with my dog, although it was raining a bit. xx

Hi Zeds

I am enjoying my walking this week the weather has been amazing and making me feel so much better...pets also help keep us sane during these times I think...

I am on my first week of another round of my palbociclib and always feel quite well at this bit of the cycle not sure if it is because I have had the 7 off and it takes that time to get back to feeling more normal...long may it last....thanks for your good wishes...I will keep in touch ...stay well xx

Hi Zeds

Hope your well...I was wondering what brand of letrozole your on?

I am wondering if some of my side effects might be the letrozole not the palbociclib..hard to tell because I started them both at the same time.

xx

Hi nik67

Good to hear from you again. The brand of Letrozole I am on is Accord. I get hot flushes and quite a lot of palpitations, which I think is the Letrazole. My worst symptoms are acid reflux, feeling queasy and sometimes quite nauseous, I am not sure if that is a symptom of the Palbociclib or just part of the mets in my liver, or just me, I have for a lot of years had a problem with acid reflux. What sort of side effects are you getting? 

Xx

Morning.......thats the thing eh its hard to know which drug is doing what...I have had really sore joints which are much better since taking seven seas joint supplements...bit breathless...acid reflux...palpitations and some nausea too....I have been taking the cipla brand so thought I might try another brand just to see if theres a difference so starting accord from tomorrow...I was on tamoxifen before my re-diagnosis and I changed brands all the time until I found one that suited me...I do think theres something in the brand thing ...I can put up with the side effects if I have to maybe lol but am thinking nothing to lose by trying different ones to just see....could be its the palbociclib or the disease ...maybe its that thing where everyone is different and what suits some doesnt suit others...I will give it a go lol....thanks for getting back to me...hope all is good with you xx