New treatment for me. Faslodex (fulvestrant) and ribociclib (kisquali) has anyone had this combination

So does mine.  I will get them to have a feel.  You just dont know what its up to inside.  Drive you crazy!   Xx

Yep it’s really a crap situation to be in and so unfair on us. Get them to feel and hopefully your mind will be put a ease as bit. My anxiety is through the roof most days and I sometimes spend a whole day in a state of panic it’s horrendous

xx

Lockdown makes it worse!  Too much time on our hands to think!!!! Xx

Yep sure does! Feel free to add me as a friend and we can chat anytime. I’m newly diagnosed literally feb this year so I’m still on the roller coaster daily xx

Yes. Add me too xx

Added you and sent you a message xx

I just thought I would say hello to you and to say hang in there. I was diagnosed with secondary C in April last year.  First time diagnosis. I was all over the place for a while.  I was started on Ribo and Letresole straightaway.  Mastectomy and IV chemo were ruled out.  I also have monthly 'bone juice'.  This has stopped whilst COVID is still rampant.

I did not have a good start, Ribo did not agree with me at all, my bloods were all over the place so I had about 5 weeks where all I was taking was Letresole.  They switched me to another chemo tablet called Palbociclib which I have been taking since end June last year.  I have tolerated this pretty well.  Letresole gives me 'led legs' but I am used to that now.

I have CT scans every three months to check all is in order and no spread and last scan result in January was ok.  I have just had my next CT and am waiting results on this.  I had an ultrasound again last week and they showed me the comparison of this scan to last years and I could visibly see the tumour had shrunk.  It has not disappeared but I take that as some positive news.

It is ok not to be ok on this rollercoaster ride and what you are feeling is how we all feel.

I don't know if you are aware but in the secondary breast cancer group started a positive breast cancer thread and I would encourage you to take a look.

I am a self confessed technophobe and I don't know how to copy the link or I would (I am getting a bit better with the technology though).

Keep talking and sharing it is good to have responses and support from people who know exactly how you feel. So many people with same diagnosis have different treatment plans but we all have same diagnosis.

Take care of yourselves.

x

https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/f/breast-secondary-cancer-forum/186433/positive-secondary-breast-cancer-stories

Hi, above is the link to the positive secondary BC stories thread. IamLyn I'm impressed that you tagged  and  though!

Hi Iamlyn, 

thank you so much for your positive reply it’s really helped me feel calmer ( for now! ) I have my first ct scan coming up and I’m so so nervous about the result I will get and if the meds are even working or the cancer has spread some here else. My poor mind is exhausted from all the worry and anxiety I have. I am hoping if I get a positive scan result that will give me the kick up the bum I need to start living again xx

Hi Lollipops

You are welcome.. I am pleased my reply has somewhat helped you. Don't get me wrong I have good days and not so good days.  I have more good days now though.  I and so many other people get 'scanxiety'.  You will feel better once you get your results no matter the outcome it is the not knowing.  I am trying hard not to fret to much as that is another day lost. 

I spent the first 4 months in a haze and was crying all the time and not really sleeping.  For me I found going to work was a good distraction. A group was set near me in January this year specifically for Stage 4.  I fond that refreshing and we have a Whats app group as well.  Every one in the group has stage 4. We sometime talk about it but mostly not we have a laugh and chatter. The meetings have been cancelled for now due to Covid but the Whats App group is very much alive and kicking.  This has really helped me.

Also there is someone from this forum whom I now have Whatsapp chats with and this is also good medicine. Believe me I did not know how to use it until earlier this year. I am a self confessed technophobe.

When is your scan due ? 

I have just had my 4th scan, Sunday just gone and am waiting for the results.  The fear of the results has not gone away for me and then you breathe again for a while until the next scan is due - it is like a merry-go -round but this is our new normal.

Remember this we may not be curable but we are treatable and there is new research and different drugs all the time.

If ever you want to message me please do so - I don't log on every day but if you send me a message I will respond to you and this group has a lot of people on who will be able to answer your questions.  I am not an expert by any means but if you want a chat any time does not even have to be about treatment.

Be kind to yourself and if you are having a bad day accept it is ok. It would be worrying if you didn't. Let me know how you get on.

Take care

Iamlyn