Anyone else on ribociclib

Just proves my point really - paclitaxol was awful for you and fine for me. Hopefully ribociclib will be fine for you and me!

It must be very hard being a single parent with 2 young boys, supporting them as well as trying to cope yourself. Hope you have some good support around you and that the groups on these forums help as well. If you have too much time on your hands and that allows over-thinking, then maybe you need to think about what helps you to take your mind off it - either distraction via hobbies, or things like meditation/mindfulness ( Headspace app is good for short exercises you can do). Whatever works for you, as in that respect we are all also individuals in our response to stress. I used to train people in stress management and I was always amazed at how many people said shopping helped them - my idea of hell. For me it is walking, music and reading. Hope you can find your best stress reliever and that in a few weeks you can accept that maybe you just dont have many side effects from these drugs.

xx

Yes it’s a big struggle trying to look after them and be upbeat when I feel so terrible inside but I mange to do it to protect them as much as I can. I have great family and friends around me but I still feel so lonely, this is a really hard diagnoses to accept as you know. I have the head space app but not used it yet, I do things with friends and my boys but nothing takes my mind off it at all and it’s exhausting me. I know I’m early days post diagnoses so I need to give myself more time and try and be more positive if I can xx

Hi Lollipops84                                                                                                                                                                                     I am sorry to hear you are feeling anxious all the time,I am a single parent and when i was first diagnosed with breast cancer in 2004 my son was only 12 i can understand how lonely you feel, at that time i also felt alone and scared.Thankfully you have come onto the macmillan site and there are so many people here who will help you along the way.                                                                                              I think ownedbystaffies has said it all in her message she understands how it is. I can only hope you can find a way to be less anxious but its not easy,i am still very anxious all the time and some days i just feel plain sick to my stomach.Bless you and keep well Xx

Hi wino, 

I’ve been told my people that are further down the line that is does become easier but I’m fearful it won’t and I’ve always suffered with terrible anxiety. I’m hoping once I have my first scan I get good news and I can relax more maybe. Im such a negative person and that doesn’t help this situation I’m in at all. Being a single parent is so so hard isn’t it, I have great support but nobody knows how I truly feel apart from all of you. I hope your keeping well I know the sick feeling I have it permanently. Lots of love xx

Hi Lollipops84

I don't think lack of side effects means it's not working, just means you can tolerate it quite well. From experience it's a pretty amazing drug and the consultant can't believe I have so many side effects. I know the feeling of being apart, and no one gets it and they see you looking okay because it doesn't really show and think it can't be that bad. I suppose it's up and down.  Must be tough being a single parent and I'm sure you're doing an admirable job. I've clung to work, just four days at home and it's a fantastic distraction. 

Hello

Wow 17months, excellent. I have just finished month 4 last Saturday. The nurse employed by the drugs company ( Ribociclib) will come to my home later today and take bloods and possibly ECG. She is paid to do visits to people on Ribociclib for six months, then I will have to go back to Phlebotomy Dept I guess. 
If all is well with bloods then I collect cycle 5 from Chemo nurses on Wed and have monthly Fulvestrant injections in bottom.

I have my CT scan in a weeks time and get the result on Monday March 23rd, then I will know if it’s working or not.

No, I’ve not had any more headaches, fortunately. My main SE are difficulty sleeping, sore/ itchy dry eyes, skin and scalp. Plus chemo fatigue second and third week. 
Do let me (us) know how the medical cannabis goes ?

I am currently avoiding crowds of people busy shopping centres etc. There are 9 cases of Coronavirus in Brighton, not many, but it worries me. 

Judith x

Hi Judith

I can hardly believe it myself. The cannabis is due to arrive today, famous last words. Can you believe my kind boss paid for the prescription which was  £408.80. I'll let you know about it. 

That sounds like a good arrangement with the nurse coming round, shame it ends after 6 months. 

I wish you all the best with your scan results. My consultant waited 7 months before checking whether the Ribociclib was working and then arranged a scan.  Let me (us) know the outcome and good luck again. 

I don't blame you for semi self-isolating and am doing the same in Twickenham. I've just had a bad chest and temperature and the hospital didn't want me anywhere near the chemo Day Unit in casec it was the coronovirus. The clinical nurse specialist said symptoms of neutropenia can be similar to the virus'. In the end I had to sort it out through 111 and the GP who gave me some antibiotics. I've been off the chemo tablets so it wasn't neutropenia I think. Messy! Anyway, I think the hospital want me to have a coronovirus test before going back on 21 for blood tests so should be getting one in the post. 

The side effects don't sound too bad, but still annoying. They might stop after a while as well. I had itchy skin, blurry vision and swollen ankles for a few months only. 

I am 51 and on full dose of ribociclib and Letrozole and have been since October after being diagnosed with metastatic breast cancer in my lungs following a lumpectomy and lymph node removal. I have tolerated all treatments well although my hair has thinned a little and my eyebrows and body hair have disappeared. Recently my taste has changed significantly and I have a strange taste in my mouth all the time. Food doesn’t taste like it should. Heartburn is also quite regular so I need to watch what I eat. I would still rather have this in the knowledge that the drugs are doing what they are supposed to and shrinking the spots on my lungs!!!! Hope you get on ok..

Elspeth xxxx

Hi all is this thread still active ?