TRIPLE POSITIVE GROUP

Ingerp - we were probably there the same "million" years ago! Glad you have loved it. It holds a special place in my heart.

Happy Easter to all you amazing women!

Hi there,

I’m in this site not for myself but for my mother.

My mum has been diagnosed with triple positive breast cancer. Positive nodes showed up on the Cat scan both under the arm and in the stomach!!!!

The doctor has stated that she doesn’t think this is metastatic because it wouldn’t normally take this pathway.

Does anybody know what she meant by this? I assumed she meant that breast cancer goes to bones first usually???

My mums bone scan came back clear.

I’m feeling so sorry for her just now. She’s 80 and very scared by this tummy lymph node thing.

My mum is getting 12 weeks of paclitaxol with Perjeta and Herceptin. They are also giving her a bisphosphate every six months too.

i don’t know how many nodes are involved in armpit. We will find out after operation. Her lump was 2cm.

I’m worried they’re going to come back and say she is metastatic.

Doll

Thank you Hapa,

That’s pretty much what our oncologist said. She said that the six week scan would tell them more. I think if the nodes in the armpit go, but don’t go from stomach, then that is suggesting that they are not cancer???? I THINK that was what she said. It was some sort of process of elimination that would help her make her decision.

We start chemo in a week. I’m so glad to be back on this board and have the support and knowledge that is around here.

I’m the UK and we tend to never ask for second opinions. But I think mum really likes her oncologist. So I guess that’s good.

Can anybody tell me the sort of success that can be achieved with both perjeta and herceptin.

Has anybody done Herceptin without a port?

Doll

Thanks Morrigan,

It’s always good to hear that people respond well to their treatments. This is a wicked disease and I just love to hear when we women win!!!

I hope you’re doing well on your regime and have not been too uncomfortable with it.

I did FEC four years ago and found it pretty easy to do. It shocked me.

Do they know what causes Her2? I read somewhere that it could be linked to diet

I had terrible dry mouth with Taxotere. Stock up on watermelon and other melons, have them already chopped in containers in the fridge. I lived on watermelon, yogurt and scrambled eggs for days on end. I could not eat anything dry. Everything was dry. Lost a lot of weight because of this.

I'm having the same dry mouth issues. It's pretty much the only thing that I'm experiencing outside the tiredness and some acid reflux. Any other suggestions?

wahoomama, what worked for me was stocking up on the things I could eat, and also being very careful with mouth washing, I used warm salt water several times a day. Avoid dry foods, avoid hot, spicy, salty foods, It helped to get organized and plan in advance meals that I could eat, because it was very painful and stressful to be hungry and not being able to eat or drink. Plain yogurt, cold juicy fruit, juices, smoothies, bland scrambled eggs, bland vegetable purees

@Dolly - I am cold capping, using Dignicap. It's going rather well. I still have most of my hair, it's thinned out and, there is more scalp visible along my part and right in front. I can easily cover it up when I need to (not like I go out) but, I don't think it's that noticeable to others, more something i can focus on.

My nurse said this is the time when shedding slow down. The last few days shedding has been mild so I'm hoping she's right and, I won't lose too much more.

I'll let you know how it ends up. From what I'm told the cold capping works to prevent total hair loss and, helps the hair grow back faster. We'll see how that goes as well. Still a good couple of months before I'll see it filling in but, I can't wait 😁

"I recommend using Aquaphor to help with nosebleeds. I put it on a q-tip and put some up each nostril, then pinched my nose and rubbed it."

I never thought of that. I bought it for my hands but, I will give that a try

wahoomama - keep in mind that you have a multi pronged regimen, and any of those agents can cause the Big D. You received loading doses of all in this first infusion, so for many of us, the first treatment can be among the worst. Also figuring out how you will be affected going forward can be a moving target. I found that I would get one thing under control and a new issue would crop up, lol! Make sure to keep your onc apprised of all side effects, there are many ways to mitigate them. You don't want to get dehydrated because that brings other woes, and extra IV fluids may help you as well. Are you getting an injection of Neulasta or receiving the on-body injector? If you are going in for injection, getting a bag or two of fluids then could be helpful. If Immodium and bland foods are not working, there are some stronger prescription meds that can help also.

laughinggull - I do have the sheets of side effects (I used the ones from the American Cancer Society - will link for others) I used for each infusion. I found those helpful since my SEs tended to vary with each treatment, and I had a hard time tracking unless I wrote it down. I think there are also some phone apps. I have been on this site for a long time so I have written about this stuff repeatedly - helps me remember it, but I think it can go two ways - permanently etched in one's memory because it wasn't that much fun, or dismissed because it wasn't that much fun. I'm thinking dismissed might be the way to go, lol! The fam is doing well, DH is working from home for the most part, going in once a week or so. This has been interesting for me because he works in a military office and much of his work is classified so I have never been around it - I have discovered he talks to himself when reading email! Also, he absolutely can't multi-task. My daughter has been working from home for the last several years, so nothing new for her. My son is a firefighter/paramedic on an Army base in VA, I am glad that is where he is, not out in the community transporting patients to the ER. His roommate is a firefighter/paramedic doing that and they have a very strict protocol for disinfecting, but I worry about both of them. I have not left my house in 30 days - my WBC is below the low end of the range and I am 63 - both risk factors, so I am being really careful, but have been busy making masks for friends and neighbors and working on projects around the house that I am usually too busy running around to tackle! I hope you are doing well too and staying safe.

Newbies - Aquaphor your whole body pretty much....

https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/phm-tracking-tools.pdf

Sugar77 -

Thanks for all that. I am trying to keep track and I will let the oncologist know about the side effects. I hope you are right about the loading dose. There does not seem to be any rhyme or reason to the "Big D" as you call it! It comes and goes. Last night I had the WORST acid reflux right as I was getting ready to eat dinner. Came out of nowhere. I could barely eat because every time I swallowed a bite, I got this huge burning. So I'm calling about that too, today. I need to eat! I'm actually very hungry and want food, so there's that at least. I'm so reluctant to throw any more medication into my already over-medicated system with this chemo. I'm normally the person who takes nothing and uses natural remedies for almost everything. This is very foreign to me.

I take pepcid every day morning and night at the direction of my oncologist. After round 4 of TCHP, I am still suffering from breakthrough reflux, which I treat with Tums. I hate it. Only other time I've experienced heart burn was pregnancy. Alot of these side effects are like pregnancy

AngieB92 - they did not give me any Pepcid. I did talk to the nurse navigator yesterday and she suggested that as well, if I continue to have issues. I've actually found that as long as I don't let my stomach get too empty, it's not happening. So I've switched to eating smaller meals every 3 hours or so and that seems to be better. I have a call into the nutritionist at the hospital for a consult, and I'll talk to the doctor on Monday when I go for my mid-cycle lab draw.

Fab4Mom - thanks - I'm definitely going to discuss that with the doctor.

HeartShapedBox - same here. Once during one pregnancy, I had to take something for acid reflux. My digestive system is usually so healthy and great - and this stinks!