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metastatic cancer. 2nd time around and taking Letrozole

Ninaho
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Morning Folks , 
   Well i signed up to this probably 12 years ago when i last had brest cancer ... but didnt get involved .. I feel a bit alone so i thought i would join in on the convo ...
  
   This is going to be very helpful to read and hear all the side effects , and ailments and posotives from this group ...

    I have been diagnosed for about 2 months now ...Am on Letrozole , had an MRI and a scan ...Started on the dreaded  Palbociclib , after 3 weeks had to stop , oh my god ...Thought i was going to die ...Awful sife effects ...

    A really sore throat and chest aching all over , just wanted to stay in bed .....so after talking to the clinical pharmasist , told me to come off for 2 weeks ...

    I suppose what i really want to know is .. I still feel awful with flu like symptoms, sore throat , aching body tired etc etc ....Is it the cancer making me feel like this or is it a virus or is it Letrozole ...I cant work it out ...

    I see people have issues with Letrozole ...maybe thats it ..

    I have cancer in bones , brest , liver and lung ...

    I dont want to stop the Letrozole really if i can help it ...But with no quality of life ...I was just wondering ..If this is the feeling of Cancer or what !!!

     I will read through your messages and grt some incline as to what i can find out ....Gosh this is a lonely business ...Sorry for the typing ...Love to all

     

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    Hi Ninaho, 

    You have come to the right place to meet others in a similar situation so you feel less alone and can chat to others who understand what you are going through and who have experienced similar side effects to Letrozole or Palbociclib. I am sorry to hear you have been feeling so unwell and it can be difficult to tell what is causing these flu like symptoms. I think it would be a good idea to talk to your doctor or your medical team about this and they will I am sure have the expertise to tell you whether they think this is a side effect of the Letrozole or not. As it seems to be severely affecting your quality of life, it is definitely worth bringing this up. 

    We have had many members post on our forum about side effects linked to letrozole and if you type the word 'letrozole' in our forum search at the top, you will be able to find past relevant threads on the subject. I have also added the word 'letrozole' to the title of your thread so that it can be spotted more easily by other members who are taking or have taken this drug. 

    I will now let others who've been through all this before come and say hello. It can be a lonely business as you say and it is normal to feel no one else is going through the same but I just wanted you to know there are others right by your side here on this forum who will understand what you are currently going through. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Hi Lucie.  Thank you.  Looking forward to talking to others 

  • Offline in reply to Ninaho

    Hi Ninaho,

    A very warm welcome to our forum, although I'm so sorry to hear why you've had to join us.

    I can fully understand why you feel so alone, but you need never feel like this, now that you've joined our forum. There are always others going through the same treatments as you and they are happy to share their experience of  treatments, along with any advice on how to minimise side-effects.

    I have had 2 bouts of primary cancer, but that was 14 years ago. I haven't had any experience of Palbociclib. I took Tamoxifen for the first year, then changed to Letrozole, after the second cancer was discovered. Letrozole did cause a number of side-effects, including joint pain and extreme tiredness. I did persevere with it for 6½ years. Not everyone gets side-effects

    How are you feeling since you've a stopped taking your medication and have you contacted your breast care nurse for advice, now that you've done this? Most of the hormone blocking tablets, have similar side-effects, but some are more severe than others. You might feel better with a different prescription, which is something your nurse can usually arrange for you.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hello Jolamine , I dont think i have replied to you ...ThaNK YOU so much for that message ...  Yes tomorrow i will get in contact with them to see what they suggest .

     The symptoms are horrendous i find ...I just dont want to get out of bed ...Their must be an easier way ,...
       61/2 years is a god innings .How on earth did you manage that ... Perhaps i have given up too early..This is a useful chat group to hear about others ..
     Nina x

  • Offline in reply to Ninaho

    Hi Nina,

    I had all sorts of emotional problems with Tamoxifen, along with hot flushes & fatigue. When I started Letrozole the extreme fatigue and flushes continued, but they were nothing in comparison to the pain in all of my joints. I eventually had to have both knees replaced. I then had problems with my eyes. I had cataracts removed in both eyes, but this led to other problems and I started to lose the sight in both eyes. After 7 operations to my eyes, I was fortunate enough to regain my sight, for which I am very grateful.

    I also had problems with severe insomnia. My nails developed longitudinal lines, look devitalised and break frequently - this is still the case, after all this time. My scalp became extremely itchy - enough to wake me from my sleep at night and again, this still persists.

    Some people find that the side-effects begin to lessen, once you have been taking Letrozole for a while. How did I manage to stick with it for 6½ years? The answer is  - by sheer grit and determination. I had previously lost my mum to secondary breast cancer. Like you, she had primary breast cancer 12 years before this. By the time we realised that it had metastasised, it had spread to her brain, bones, liver and lungs. That was many years ago and there wasn't much that could be done for her then. Fortunately, treatments have come a long in the meantime.

    There was a delay in my radiotherapy, when my first surgeon refused to scan a lump in my other breast, telling me that it was ok. I didn't feel convinced, and refused to have the radiotherapy in one breast, while ignoring the other. I eventually saw another surgeon, 11 months after my first surgery and he took my concerns seriously, thank goodness. Unfortunately, by that time, it was too late for me to benefit from radiotherapy, so I had to give Letrozole my best shot. It wasn't easy, but I'm glad that I persisted.

    I sincerely hope that your care team can suggest something that won't leave you feeling so awful. Please keep in touch and let us know how you get on.

    Kind regards,

    Jolamine xx

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