Looking for hope
 

Looking to hear from long term stage 4 survivors who have been on several lines of treatment. I'm stage 4 and on my 3rd line and second trial. The longer I go the more nervous I get. At the beginning I was good, the longer I go the more I think I'm running out of time. Only 27% of stage 4 make it to 5 years. I'm so jealous of people who have been on Herceptin and Perjeta long term and thriving. Looking to hear from those that have been on several lines of treatment and past the 10 year mark. Really in need of some hope. I'm really hoping there's a ton of you out there

Re: Looking for hope
 

Hi there! I am still basically first line, but I know a number of women through an Australian group I am in who are 10+ years and have had many different treatments, including some not specific to Her2+. Seems such an individual thing! I think Bunty is one example here. There's always hope......
Best wishes.... Pam

Re: Looking for hope
 

Hi, my friend doesn't post here but is twelve years out from stage iv. On and off treatment of course but has done well. Andi who is a member of this group has been stage iv since the late 90's, don't lose hope and try to stay positive. I think generally the people doing well don't post because they're too busy enjoying their lives!

Re: Looking for hope
 

What trial are you on and how are you doing, are you NED or stable or what?

Re: Looking for hope
 

Hi SoCalGal!

Currently on the HER2CLIMB and stable. Lots of side effects. On heart meds, bad echo,
drugs have caused ulcers and just found out I have osteoporosis from treatment. Before this one I was on a trial for TDM1 and keytruda.

Re: Looking for hope
 

Well you’ve been on two of the top trial drugs. One is now approved (kadcyla) and tucatinib is supposed to be out first quarter of 2020. Also due first quarter is ds8201. So you’ve picked a good time to go mbc. It’s not very productive to worry about how long others are alive and on what protocol—better to focus on improving your own QOL. What do you do to improved heart function (is your lvef low or high blood pressure or?) and osteo? While this is a terrifying disease, our main job is to manage our mind game and survive our treatments! Have you discussed ways to improve QOL with your doc? Joined support groups or exercise and healing or any of the zillion modalities that people find supportive and healoful (I’m gonna leave that typo lol)?

I’ve been doing this for 12 years and it’s a grind. I get that. Try to put energy where it will have the most affect. I’d discuss ways to stay stable while improving QOL w onco. (Dose reduction? Coming off trial when drug is approved so you can do your own protocol using the same drugs—or maybe that’s allowed on trial. Idn). Good luck!

Re: Looking for hope
 

Is tucatinib being out the first quarter of the next year just a guess or is that pretty much confirmed?

Re: Looking for hope
 

@scottmac I don’t know if it’s confirmed but tucatinib is certainly expected out the first quarter of next year.

Re: Looking for hope
 

Hi Valley Girl! I feel your anxiety, but as SoCalGirl writes, there are some new drugs on their way to us HER2 metsters. I've just passed 12 years Stage 4, and December is my cancerversary - 19 years since first diagnosis. I've had a lot of treatment at Stage 4, and sometimes it's been a roller coaster, with hiccups along the way.

In a nutshell, Herceptin since Stage 4 for about 10 years, with quite a bit of chemo during the early Stage 4 years, e.g., Taxol, Abraxane. I had to stop Herceptin (subcut) because of low EF, so have been seeing cardiologist for the past 18 months, and on beta blockers and ACE inhibitor with much success - EF sits at about 65%. When this all stabilised I stared Kadcyla, and continue with that. However, I also have had local intervention prior to Kadclya, such as liver resection of a large met, SBRT on lung met, and on a very large lymph node in my abdomen which caused all sorts of problems (the node not the treatment as such). It had crushed my liver bile duct so have had a few stents inserted and replaced, but now all good again (although the radiation treatment caused a duodenal ulcer to develop, which is managed by meds). I do have a few small mets in my lungs and liver, but they are stable with the Kadcyla, however, 8 weeks ago a 12mm brain met in the cerebellum was treated with SRS, and then on the review MRI last week a 4mm brain met in the right temporal lobe was detected, and treated on Monday this week with SRS. At the end of last year, and it's still a bit of a mystery, I was very sick and nearly kicked the bucket with pericarditis, and cardiac tamponade. But it seems not to have been related to the cancer or treatment, but maybe because our bodies do take some battering with all that it endures? (I was struck down with pneumonia 3 months before, so perhaps that also contributed?)

What I'm hoping to convey is that perhaps the disease progresses and presents in new places the longer on Stage 4, but there are still options such as trials, and local interventions, such as surgery and targeted radiation - and we are watched closely for any changes. When I first was diagnosed Stage 4, doctors were quite reluctant to even consider local interventions, but with longer survival rates, I have found this attitude much changed.

To be honest I do feel sometimes like it's catching up with me, but then hope returns. I still lead quite an active life, just back from a lovely holiday (sporting an injury from falling on a dance floor from too vigorous dancing, and maybe a few glasses of wine!!), and heading off again next week for another week away. I like to find joy where I can, and I give much thanks for being watched over by my medical team, and maybe a higher being??

And of course, we are all here for each other, and this site has inspired and educated me beyond belief.

Best wishes, Marie

Re: Looking for hope
 

I've been a member of this site since 2006. I am continually impressed how knowledgeable and helpful so many members are. My best to all and a special extra hug to those with MBC. Knock on wood, I have had no recurrences since my original DX 13.5 years ago. I, too, believe that knowledge and hope help!