Worried about heart

Hi there,  just caught up on your post and wanted to say that I hope you got on ok today and now have some answers. Best wishes 

Thank you, I was told today that the echo I had in December was unremarkable and the one I had today was the same. 

She needs to do some measurements to fully compare them but I'm feeling more positive. 

Obviously will have to wait for the full results.  Also had multiple bloods taken, the results that are on the hospital app look ok but it looks like just the standard ones and they definitely did more than the normal 2 tubes. Not sure when the other results will be available or what they were checking. 

It's the waiting game again but I suppose it's good that they are being thorough.

Hi - you are not over reacting it’s natural !

I finished my chemo two weeks ago and have been told I will be on same medication as you and I’m totally upset about the Ribo one - it’s blindsided me as there is not enough evidence of impact for adjuvant treatment and I’m like you as in i don’t want to live my life with side effects that impact very negatively !

and the heart problems from this scared me too so I have asked for another consultation to have my15 questions answered! 

how did it go for you as you posted quite a few days ago 

Thank you Jenny K

My oncologist has prescribed the Ribociclib and I started it on Tuesday.   Tuesday night I had terrible restless legs with hip pain which kept me awake most of the night.  I immediately blamed the Ribociclib but then my husbands cool head pointed out that I had my second Zometa the day before so it was more likely to have been that.

I have taken Letrozole for 18 days and so far so good.

So I am feeling the best I have this year although I still have more hospital appointments than I expected due to needing monthly ECGs and blood tests for at least the first 3 months of Ribociclib, a confirmation of lymphodema and a follow up MRI.

My oncologist says the Ribociclib reduces the risk of reoccurrence by another 5% and she couldn't prescribe it before as they didn't have the funding.  With 8 of 11 lymph nodes cancerous I will take every % they offer!

Thankyou so much with your story it really helps. 

i know I should be grateful for them offering me it all - belts and braces - I had a tiny bit in one node ( caught early ) and had masectomy and three nodes removed followed by chemo. 
I know everyone is different too - so maybe my oncologist can help too next week with my concerns - but this kind of support on here is priceless and your lived experience is so helpful. 
I appreciate your response. 
I hope you continue to feel the best you can

thankyou once again.

Ps -  only just starting my medication  journey too - day 2 of Letrozole and getting prepared for Ribo - 

so maybe we can update each other of side effects etc. and the good stuff

x

The good stuff is so important.   Understandably the majority of post on here are from people who are struggling  because like my post it's when we need that extra support and reassurance and even if no one replies putting my concerns on here in my own words helps me to put things into perspective and let things go.  Like a worry jar!

My positives, 

My hair is growing 

I can taste my food

My stomach has settled 

I can go swimming again

Small things that I used to take for granted are so much more precious, although I still can't get my head around the fact that I am being treated to prevent the reoccurrence of a potentially fatal disease!

I am more than happy to compare notes whenever you want,  see my profile for my full story and ask me anything if it will help you. 

I was definitely of the impression that once the chemo and radiotherapy was done it would be repeat prescriptions, 6 monthly Zometa and an annual check up.   Came as a bit of a shock that it's not that simple. 

Sorry I'm wittering on!

Hugs to you and I hope you are reassured after asking your list of questions xx

I have now received an appointment to see a cardiologist in August......stress levels up again!

It’s a great forum !

and I’m glad you have found some positives in light of getting your head around it all- I think that’s the thing it’s overwhelming x

never apologise for wittering away - it’s good as you said it’s down on these notes and out your head. I was the same regarding treatment with the tablets etc. as per my post. 

my hair is growing back too it’s like a fluffy cloud lol

i am enjoying the taste of coffee again!

hugs received abs hugs back to you x 

Just replying to your new post !

you had mentioned your heart worries so maybe you can get the thorough check and they have acted upon it x 

However I understand your stress it’s relentless - i hope you get some reassurance from the appointment  

And they have still kept you on your Ribo ? 

sending you a hug x 

It was a total shock, appointment appeared this morning on the NHS app.  I knew my oncologist had asked cardiology to look at my ECGs and Echo results but as the Ribociclib was started this month I assumed that they had reviewed the results and that everything was fine, now I'm not so sure. 

I asked my nurse if my heart results were ok when I collected my first Ribociclib and she said the results were within range, whatever that means! I assumed that was the end of it and they would just do the monthly checks during the initial treatment.