Long time, no see!
 

I’m pleased that I recognize many names still, that’s a good sight!

Maybe nobody remembers me but that’s ok. I’m trying to find people who have been on Kadcyla longer than me, which is about 3 years now. (I forget!)

I’m also trying to find people who have been doing actual chemotherapy for ten years, give or take by a few. I know the AIs and Tamoxifen meds suck but I’m interested in the actual infused chemos where we are still tied to that space, years later.

This may get written in my blog but mostly I’m curious. Those things don’t show up on a search, which is shameful. I want to change that and let people know we metsters can hang in there.

I remember being told I’d be in chemo for life, but at the time I thought it would be 2 years. Now that many of us are living much longer, I think our lives should be represented and more people should know how long we. An fight. I know many years of going In to chemo has changed somethings about me (mostly that I spend ten days a month sick) but other things too.

Hugs to all you amazing women.

Re: Long time, no see!
 

Hey there, Ann!


I just popped on between thunderstorms and was delighted to see your post! The hair is fabulous, Darling!!!! May I just say!


Glad to hear you are going strong. Flori is doing Kadcyla now and finding it a tough go. I know it isn't easy for you, so she will be encouraged by your 3 years of tolerance and response.


I will follow this thread, because you are correct in summoning the long-survivors-of-endless-chemo for role call. The Chemo Warrior Role Call.



It is nice to see your post and smiling face, Ann!

Re: Long time, no see!
 

Thanks! Hopefully somebody has done Kadcyla for years. Yes, it’s been a struggle for me too but it’s also been effective!

Re: Long time, no see!
 

Yes, I'd like to hear from long term warriors. I've been on TDM1 and Keytruda a little over a year. Been having a hard time with fatigue and joint pain. Have been out on LTD for the past 6 months. I hate to say anything to my Dr. how bad it is because she wants to drop me to a lower dose and I think the stress of that would be worse. I'm thinking of returning to work, since the expense of doing this trial has depleted my saving. Just not sure

Re: Long time, no see!
 

Good to see you back, Ann! And to hear Kadcyla is working so well for you. I am still plodding on with Herceptin every 3 weeks - coming up to cycle 100. Long may it keep working.
Best wishes..... Pam

Re: Long time, no see!
 

Hi Ann, I have been stage 4 for 15 years. I received TDM1 for a little over 4 years. It remained successful in treating the cancer, but I developed nodular regenerative hyperplasia of the liver, portal hypertension and bleeding esophageal varies. I have remained stable with Herceptin and Perjeta the last 4+ years. I recently have signs of progression, so not sure what is next. I now have ascites and a clot in the portal vein, not a good situation. I am so thankful for these 15 years of relatively good quality of life. I hope the very best for you

Re: Long time, no see!
 

Hi Ann, good to see you back here on the board, and you have given me hope for Kadcyla. I'm now on Kadcyla about 3.5 months, heading towards the 8th infusion. I've had a dramatic improvement in my tumour markers, which started at 426 mid January, and are now 8, and first scan showed reductions in all tumours. I hope I can stay on it as long as you have. But fatigue is a big issue. I look forward to hearing from others.
Cheers Marie

Re: Long time, no see!
 

Hi Ann - I only did 3 cycles of Kadcyla, unfortunately it was too toxic for me (liver enzymes 5x normal after first infusion plus chemo type side effects were too much for me, had zero QOL) AND I had progression.

I feel like there are/were many women who did well on this combo for many years. Maybe you can query some of the facebook groups, HER2 and others? BTW you look so great, inspiring to see!!
xx Flori

Re: Long time, no see!
 

So happy to see your post CoolBreeze - glad you checked in! I'm not one that fits what you are looking for but just wanted to say hello and welcome back :)

Jessica