Devastated

Hi Martello, I think we all remember the day we heard the words “ incurable, stage 4 and advanced” so we understand how you felt.  It was June 2022 when I heard them and 3 weeks later I had a full hip replacement and a chunk of femur.   When you get your treatment plan there will be a lot to take in so have someone with you....my husband is good at taking notes!

i am on Letrozole every day, as I was for 7 years after my primary BC.  Also Ribociclib for 21 days then 7 days off.  That means going to oncology every 4 weeks to collect the tablets and have an injection of Denasunab.  It felt very confusing at first and I didn’t feel great, but not as horrendous as chemotherapy..... and after my dose was reduced, I felt much better and now life is good and my quarterly scans are “stable”.  Your oncologist will be in touch regularly and your BC nurse.  We are living with cancer and it is treatable.  Best wishes.*

Hi

im in a similar position, just found out I have secondary breast cancer after 18 years in my lung. 

oncologist prescribed letrozole and ribociclib and I start these next week.

my breathing is very poor so taking it easy. My chest sounds like a rattling can!

I didn’t have chemo back then so no experience of that.

im so sorry you’re going through this again, it’s an awful shock!

take care of yourself.  One day at a time.

Hi thank you so much for your reply, I had a mastectomy and then after chemotherapy was on tamixfen for 6 yrs with primary so expect the Letrozole is a similar drug?. I have been told I am ER positive HER2 negative but not really sure what that means a question I expect oncologist will give me further details about . I keep telling myself I got through it before & I can do it again My husband has been a great support & will come with me to any appointments it is a lot to take in & I'm just hoping the treatment will work for me x 

Hi Thank you so much for your reply, I too have had some breathing problems mine is caused by fluid around the lung I think it's called a pleural effusion.  I have had it drained twice in the last 6 weeks, doctor is now saying I need a tube fitted so the district nurse can come & drain off a couple times a week, he said hopefully with treatment this will stop the accumulation & tube can be removed.  

Yes, I had a small pleural effusion too but they say it’s too small to drain, more issues in the lung so they gave me oxygen and morphine. Breathing is the worst at night and anything hilly or with stairs. 

we sound like we’re in very similar positions.  I hope you do well with your treatment, it’s not our first rodeo! We got this!!

I find walking when it's windy really difficult & living on the coast it's always windy!  ...got to keep going   

How’s it going Martello ?

Hope you’re doing okay x

Hi Bassy1969 thanks for your message I'm feeling a bit down, really finding it hard coming to terms with diagnosis especially with everything taking so long still waiting for oncology appointment for treatment plan just seems to be taking forever although I have started the Letrozole on Friday which I got prescribed from breast clinic. I found out about the cancer on 12 July in A&E it just seems a lifetime ago!  

It feels like the fluid around my lung is building up again & breathing has got a little bit worse,.

How are you has the hot weather affected your breathing? 

I’m really sorry to hear that.  The waiting is absolutely the worst. I even tried switching to private appointments without success to speed it up so I feel your pain. I ended up finding out who I’d been referred to by my GP then harassing their secretary for an appointment. It helps to be proactive, I find. Once you have an appointment date at least, you know the wait is coming to an end.

I started letrozole and Ribociclib and boy did it make me sick. Had to call hospital for anti sickness meds. The nurse said ‘most people need these’ which annoyed me as they could have prescribed them at the same time! Instead I spent hours waiting for a call back and more hours waiting for a prescription but anyway, I’m feeling better now.

For me, breathing is terrible, can’t do 100 yards without gasping for air like I ran a marathon. I’m going to ask what therapies are available on my next appointment, maybe breathing exercises might help? I have oxygen for an evening, that helps and a hand held fan which is helpful but I still sound like I ran a marathon most of the time.

Take care of yourself and keep in touch xxx

Hi Bassy1969;

I phoned my BC nurse yesterday she said i should have had oncology appointment booked by now & chased up for me, got phone call this afternoon for appointment on 22nd September, so hopefully I will start treatment soon after. 

Must be really hard for you when breathing is so difficult, my dad had COPD and was on oxygen 24/7 so I know how debilitating it can be. Hopefully there will be some therapy available to help you.My breathing problem is no where nearly as bad & is caused by the fluid buildup, I have appointment for respiratory clinic in couple weeks to discuss having drain fitted. 

xxx