Any Herceptin / Prejeta long term survivors? I really need to hear from you.

[Onedayatatime60]

The death of Shannon Doherty has made me think about my own journey. It is not like I was a huge fan, but she was diagnosed with MBC the same time as I was- Feb 2020. so I have followed her and her open dialogue about her cancer. Her death of course has made me go to the darkest of places.I have been stable on Herceptin/ Prejeta and Zometa with liver mets now undetectable and no progression to bone mets for four years. My Onc tells me he has two pts., with same HER2+ MBC, one 14 years on this regime the other 9.I need some positive thoughts today. Is there women out there who have been stable on this regime for years? I am thankful that I feel well, I have two international trips planned and though every day is not perfect, there are many perfect days.But yesterday and today I am feeling a little despondent and worried both for my future self and for those that will be left to grieve. Thanks for your insights.

[urthmothr]

I am on the same regimen, with the same diagnosis, and I just celebrated celebrated my 4th anniversary of completing Taxol chemo, with no new mets!. I had one lymph gland that cleared right up, and 2 compressed vertebrae, which might be osteoporosis, but has stabilized with no changes in 4 years. I do have chronic diarrhea, and trying to find a trigger before considering dropping perjeta.

[Onedayatatime60 in reply to urthmothr]

Oh my goodness, I had terrible diarrhea too, but the key word is "had"—it's no longer an issue! I love my oncologist, but he didn't have any real solutions other than stopping Perjeta, which I didn't want to do unless absolutely necessary. It might not work for you, but here's what I did after dealing with it for over three years:

Tracking: I made a chart for days 1 to 21 and noticed the "bad days" were day 2 and day 7.

Prophylactic Imodium: If I had plans on those bad days or felt like I might have diarrhea, I took 2 mg of Imodium. I didn't take it at home since my bathroom is nearby, and I never took more than 6 mg per 21-day cycle.

Food Diary: I kept track of my food to find triggers. For me, it was nuts, cereal, bread, and pasta—all common IBS triggers.

FODMAP Diet: Even though my issue wasn't IBS, the end result ie diarrhea and stomach pain is common to both so I had nothing to lose therefore, I tried the FODMAP diet to see if it helped. It's not as restrictive as it seems; you can have many foods in smaller quantities and I followed it loosely not super strict for 4-5 months. If you try it, the Monash University FODMAP app is the best resource- great app that easily tells you if a food is high in FODMOPS

Diarrhea is now a rare event for me. I’ve reintroduced nuts and no longer follow the FODMAP diet. I still avoid processed foods, partly because I intentionally lost 30 lbs last year and want to maintain that. I know if I eat things like potato chips or cookies, I'll get diarrhea, but in moderation, it's no longer an issue. Who knows if my improvement was due to these changes or if it would have happened anyway, but I'm so relieved it's a distant memory now.

I hope things improve for you. I know this is a long reply, but I wanted to give you the details. The only thing I wish I had done is ask to speak to a dietician—they might have had some good suggestions

[Hopeful4Cure in reply to Onedayatatime60]

I too have the same emotions and watched her podcast often. The news was a shock. I always wondered what type she had and the "miracle" fusion she spoke about last year. I just read that the type she had was invasive. She looked good on her last podcast too. My apologies for not speaking about your type and journey, because I have a different type. However, all of us are praying for each other and hoping that we will be able to put up with the side effects, have no progression, be stable and live for many years. Blessings

[urthmothr in reply to Onedayatatime60]

s. Thank you for the tips! How frequently did you get infusions? I get them every 3 weeks. Do you still avoid bread and pasta?

[Onedayatatime60 in reply to urthmothr]

I am also every 3 weeks

I needed to drop some weight and did a program and lost 30 pounds.

In the program you can eat complex carbs like potatoe and rice but you limit simple carbs like bread, pasta and added sugar. This is for weight management, but who knows if it helps with diarrhea . I just know when I eat unhealthy foods, I feel worse

[urthmothr in reply to Onedayatatime60]

I lost 50 lbs on chemo, have kept it off, but the diarrhea might be contributing to that.

[Iwasborntodothis]

The Shannon thing is getting to me too not because I am on the same meds but because she was pictured looking pretty good walking around in LA just a month ago. I am sorry I don't have any input on your meds but I am with you on the emotions.

sending hugs

[JEE123]

It also hit me pretty hard. It was a shock.

[Dragonfighter]

Hi, I was also diagnosed at around that time and am doing well on letrozole and ibrance but I know what you mean, When ever I hear about the death of someone from breast cancer I feel very discouraged and worried for myself and my family. I have to remind myself that every person's story is different and all we can do is move forward with hope.

[mariootsi]

Shannon's death hit me hard too

[Liessie2014 in reply to mariootsi]

I too was affected by Shannon’s death too , ❤️