Hi

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Hello, This is my first time posting here. I was diagnosed with stage 2 invasive breast cancer in 2017, I had a lumpectomy and 3 lymph nodes removed, I was told there were no signs of cancer in the lymph nodes so only need radiation. I had a bad reaction to the radiotherapy, but with 6 weeks of steroids recovered from that. They then said they could see some lesions on my liver but after 3 months and another MRI it was decided this was not cancer. I was given Letrazole, which I was told I would need to take for 4 years, this gave me very painful joints so this was changed to Tamoxofen, the only side effect I got from Tamoxofen were hot flushes which were quite intense but manageable. 4 years later and after a CT scan for digestive problems, namely very acid stomach, I was diagnosed with a large tumour in my liver and further smaller tumours. I had a bit of a delay in seeing the consultant but was again put on Letrozole and Palbociclib I have now been taking them for just over 2 months, I am still getting very bad hot flushes but so far my joints are ok - I do try to exercise regularly and that does seem to help. Unfortunately with the Palbociclib by neutrophils (white blood cells) each month have gone down to .50 so the first month I had to wait two weeks before I could start the next month, the dose was lowered to 100 mg but the same thing has happened again this month .50 again. I am hoping I will be able to carry on with the 100 mg this month - has anyone else had this problem? I am quite worried - I have just had my first CT scan since starting the medication and feeling quite nervous to see if the medication is working. I would love to hear from anyone with the same sort of problems - thank you x

  • Hi nik67

    We do seem to have the same side effects, I also was on Tamoxifen for nearly 4 years before I got diagnosed with secondary cancer. I had previously been on Letrozole but my joints were so painful I couldn't carry on with it. I have not had the joint pains anywhere near as bad this time, but I do try to do some stretching and strengthening exercises when I can fit them in! They do seem to make a difference, but maybe it is a different brand, I can't remember the brand I had originally. So maybe a good idea to try a different one.

    All is good with me, thank you, in my third week of my Palbociclib, and feeling a bit tired and a bit nauseous sometimes but generally feeling lucky as I am feeling quite well. A bit nervous about getting my blood test soon, hoping my white blood cells will be ok.  I hope if you change your Letrozole brand you will feel better - please stay in touch and let me know. 

    xx

  • Hi Zeds

    I wonder if it was a different brand that you were on before when you were on the letrozole it definetly sounds like that might have been the case...I have been and collected my accord brand so will see how I am with them and keep you posted...

    Glad all is good with you...I think at the start of the palbociclib I expected to feel alot worse ...so same as you I feel lucky to be keeping mosty quite well ..kinda get used to the symptoms and hope theres no wee extras come along lol....I am on my second week so a week behind you...my bloods were really low last time then better this time there doesnt seem to be any way to ‘make them good’ or any reason for the good v’s bad..maybe somebody out there has the answer?

    send your bloods with lots of luck and fingers crossed..good to hear from you xx

  • Hi nik67

    I hope you are well. How did you get on with changing your Letrozole brand? 

    I had to go down to a 75mg dose of Palbociclib as my neutrofils were too.low again last month. Even on the new lower dose my neutrofils were still too low to start this month, been off for two weeks now and waiting to find out this afternoon if I can start again. 

    Xx

  • Hi Zeds

    great to hear from you..I have had a terrible couple of weeks...the accord brand did not agree with me at all ...I felt like I was going crazy I was so emotional for no reason..I then got the sun pharmacy brand from the pharmacist which seems better......I also had a call from the breast clinic about reconstruction surgery (which i obviously cant have) I explained my situation and questioned why its not on their system as its the same hospital ...they apologised only for me to get a pre op phonecall a couple of days later they apologised ...then two days after that I got a pre op appointment through the post...I had my oncology appointment today and got it all off my chest and have also asked for all my scan reports to be emailed to me I am so mistrusting of them but I feel better today like am back in control of my own self if that makes any sense..

    I hope your doing ok....How did you get on yesterday with your bloods? 
    xx

  • Hi nik67

    I am sorry you have had such a bad couple of weeks, but glad you are feeling a bit better now, and hopefully the best clinic have got the message now! 

    My bloods still aren't good,  so have got to wait another week before I can go back on the Palbociclib. I am feeling a bit down and anxious about the delay, especially as I am feeling quite nauseous again and feeling pain in my side. Hopefully they will be ok by Monday and they start to pick up now I am on the 75mg.

    Keep in touch and look after yourself.

    Xx

  • Morning Zeds

    Thanks for your reply...thats not so good about your bloods...I wonder if theres anyone else on here having the same issue..there doesnt seem to be any way of controlling our blood count which is frustrating.....maybe it means that your body doesnt need as much palbociclib as someone else to get the same results....

    Not heard from the breast clinic today but its still early lol ..anything is possible...I hope you manage to have a good day today and feel a bit better...

    be kind to yourself

    speak soon

    xxx

  • Morning Zeds

    Thanks for your reply...thats not so good about your bloods...I wonder if theres anyone else on here having the same issue..there doesnt seem to be any way of controlling our blood count which is frustrating.....maybe it means that your body doesnt need as much palbociclib as someone else to get the same results....

    Not heard from the breast clinic today but its still early lol ..anything is possible...I hope you manage to have a good day today and feel a bit better...

    be kind to yourself

    speak soon

    xxx