TRIPLE POSITIVE GROUP

Hi, Ladies I have a question for anyone that has been out for 4 years or longer. What signs are we to look out for other then a lump? We get seen less and less and that really scares me I am at every 6 months have been for a while but after I think September of this year it will be once a year no blood work no scans not anything. Any info would be great thank you!

Im also wondering what side effects to expect on Herceptin alone. I start on monday, the 14th.

Jodi

Thanks for the information TTFan and Fighergirl!!!!

Thank you Lago and Grandmav -____

I saved the list

Hi everyone! I posted this on my October chemo aboard, but I thought I'd ask you all as well.

Has anyone else been given Zometa with their infusions? My doctor recommended it for bone strength and preventing bone metastasis, and I got my first one yesterday along with Herceptin and Perjeta. I got so achy and flu-y feeling overnight and now I can barely get out of bed. I know it's just temporary, but I didn't really expect this. I managed six Neulasta injections with not one side effect, but the Zometa has really thrown me for a loop. Anyone else have this experience? Somehow I am going to have to pull myself out of bed to get to my radiation appointment in about an hour.

I think that MO would only prescribe Zometa to me if my bone density continues to deteriorate. My first dexascan revealed that I'm osteopenic. But, if I slide into osteoporosis, I'm sure Zometa might be on the horizon.

Question - I was talking with a nurse in my RO's office about being frustrated that my MO wouldn't engage with me in a conversation about risk of recurrence. She suggested that I look for articles on the NIH website.

I did, but when I type "triple positive" in, nothing comes up. I tried it on this site and no articles come up either. Lots of articles come up on both sites when you put in "triple negative" though.

Am I searching this wrong? Anyone have any recommendations or intel on this?

Thanks!

Blessed2Be - When were you planning to try to get pregnant? What does your MO and/or surgeon think? My surgeon is okay with the fact that I am considering starting a family after treatment, but he wants me to wait for 2 years (not sure if that starts after I finish Herceptin in December). I don't know if that's standard procedure to give your body time to fully recover and make sure there's no recurrence. I was going to confirm this the next time I see my surgeon, and also get my MO's opinion. I know my MO is also okay with it, because he allowed me to undergo egg retrieval before I started treatment. I just don't know how long he wants me to wait. Maybe your fertility specialist is okay with you having a baby if you wait a certain amount of time.

Hi Faith,

I had a big problem with this too. I drank those Ensure drinks. I'd have little bits of things - sometimes I had to force myself to eat something. Everything tasted so bad. There wasn't really a magic food, though I found that sweet foods were easier to eat. My husband used to make me milkshakes (he even put raw egg into sometimes it so I'd have some protein.)

My MO also suggested drinking everything with a straw (cuts down on contact with your tongue so you can drink more and stay hydrated)

Faith,

Right there with ya on taste changes. I was given advice on using plastic utensils.I thought eating bland foods would help but for me that actually made things worse. It seemed that stronger flavors cut that yucky taste. I started craving tomato based dishes so made them my go to foods. So, my advice would be to listen to your body and see what you can get by with. That thrush will probably go pretty quickly and then you can get a better idea of what appeals to you. This too shall pass!

I had awful taste changes on Taxol, but (like lago) I've heard that you can minimize them if you put ice chips in your mouth during your infusion. Taste buds (like hair) involve rapidly dividing cells, and that's what chemo targets.

As far as food, I was into bland and salty, but could also eat sweet food, so there was fruit. I ate a lot of chicken and rice.

I was a potato girl too - any form worked but especially mashed potatoes with bacon and cheese and a spoonful of sour cream. I also liked fresh fruit and yogurt, and milkshakes. For the week or so prior to the next infusion when my GI side effects had quieted, and taste buds somewhat recovered,I ate steak and cheeseburgers like mad trying to maintain my RBC and hemoglobin.

Faith83111 - I felt like I could tolerate salty foods more than sweet foods. When my taste is at its worst (about Day 5 - 7 following treatment), mac and cheese is my go to food. And even then I only eat a few bites because I don't really feel like eating to begin with. Like others have mentioned, I was told to try drinking through a straw and using plastic utensils, and drinking smoothies, Ensure and/or Boost. It seemed like with each treatment, my taste and appetite started to improve around Day 10 following treatment. Also, I had the most issues with mouth sores after the first treatment. I had a sore throat, and it felt like I had a cold. The corners of my mouth would hurt when I yawned. All those issues didn't really show up with the following 4 treatments.

debiann - I'm totally with you. Taste changes are the only side effect I dread with each treatment. I'm already dreading it for my last treatment on the 21st. I could care less about not having hair at the moment. At least I can cover it up with a wig. I didn't even cry when my head was shaved but I will be on the verge of tears by how disgusting food tastes.

Thanks so much, KHinMD! I fear the response I received from FE was based on limited knowledge and potential fear of medical liability. My original MO was supportive of my getting pregnant but wanted me to have 6-12 months of tamoxifen, let it wash out, then start fertility process again. He has since moved out of state, but I am going to reach back to him and also seek second opinions (maybe a female FE with more experience in our population)?

Really appreciate your sharing your story and all the best with your family planning!  

mltdd - Zofran did not work for me and Compazine was my second line anti-nausea/emetic and it worked great. I was able to take it in pill form