2nd Cancer after 10 years ~ HER2 positive ~ TCHP 6 cycles

Debra1111

Hello Everyone,

I am new to the forums. I have lived on them the past week trying to wrap my head around my diagnosis and treatment plan. Reading so many threads and stories of individuals going through this along side with me has brought so much comfort and knowledge. Thank You All !!

I am 10 years out of initial diagnosis. Only had to do lumpectomy and radiation and five years on Arimidex the first time. Fast forward exactly ten years. I had a mammogram on 2/14/2020 that was clean !! Two weeks later I find a small pea size lump in my same breast that was involved before. Was able to see a surgeon in the midst of all this Coronovirus Pandemic and with the help of Radiology Services had three separate biopsies, MRI, and Pet Scan to determine that it is a different cancer this time and it had not spread so I know that I can beat this thing !! This Invasive Lobular my Oncologist said is often missed on Mammograms ?? There is so much to get to the other side this time. I had my first round of TCHP on 4/15. Handled the Chemo fine and very little side effects except mouth issues. I hate the thought of losing my hair but then that seems to be how we all feel. The hair is the least of our issues, right ? Does each treatment get harder ? I know its cumulative so I'm guessing it might. After treatment ends I think my best option is to have a double mastectomy. How long do i need to wait after I finish treatment ? Its so overwhelming.

I just turned 60 but feel I am a young 60. I hope to get back to my physical self after this is all done. I am married 35 years to a great husband and have three children. Both of my daughters are nurses so they help me so much with understanding this new treatment plan I am on. Not sure where to post this. Also following APR 2020 new start to Chemo. I feel HER2 positive is a beast that has been unleashed on me. So glad I am in treatment only 3 weeks after diagnosis. I knew this time was different and it was taking over my body. Walking still and drinking a gallon of water a day. Any advice is appreciated.

Beesy_The_Other_One

Debra, I am so sorry you find yourself in this spot again--truly. You and I are part of a very small group here, being ER-/PR-/HER2+. We are a clear minority! Being HER2+ seems overwhelming at first because the tumors can be quite aggressive, but thanks to Dr. Dennis Slamon, we have a great prognosis and many treatment options!

I did not try to cold cap to save my hair because my tumor was growing like a monster at diagnosis and just needed to get on with it, but if it's something you feel like you have the energy to do, there are threads about cold capping that are quite inspiring. I did ice my hands and feet to avoid neuropathy, and it was worth it to me, as I had none (I can send you more info on this if you're interested). My doctor told me that the effects of TCHP would be cumulative, but that was not the case for me--it was as if my body finally said, "Okay, you're going to poison me--I'm just going to deal with it." What no one warned me about though, and maybe I can warn you: they often give what's called a "loading dose" the first time and it's just like what it sounds like: they blast you with chemo. I was knocked on my you-know-what and both my husband and I thought that if this is going to get worse, would I be standing? Turns out I did better and better with each chemo. I was 56 at diagnosis, and like you, felt vibrant and energetic, but after that first dose, I wasn't sure how this was going to look in three months! I was treated at a major cancer center and they prepared me well and while there were parts that were hard, my post-surgical pathology report showed not one live cancer cell anywhere. High grade cancers like ours do respond well to chemo. I chose a bilateral mastectomy, but this was my second "run-in"---I had a one-off very rare tumor in 1996/1997 and lost half of the right breast then. I knew that both would go this time--I was over it.

I found that reading the Triple Positive thread very helpful, because they discussed issues dealing with being HER2+ since at any one time there aren't enough ER-/PR-/HER2+ ladies to really make up a group. I am sure I have not answered everything you were asking, but try me again--I'm happy to help. You can do this! I really want you to hear hope in my voice! ~ Beesy

Debra1111

Thank You So Much Beesy !! I do hear hope in your voice and I am happy you made it to the other side. This website has been such a comfort. Thanks for reaching out. Not sure how you can share with me your thoughts on icing for neuropathy. I have been looking into that for next time on 5/6. No cold capping here. Just going with it.

ShetlandPony

Hi, Debra. Have you had a pathology review to double-check everything? ILC is usually ER+ PR+ and Her2 negative. Did they check Her2 with FISH or CISH as well as IHC? Does the pathology report say e-cadherin negative (the hallmark of lobular)?

Beesy_The_Other_One

Debra, I was in too much of a rush and didn't read carefully that you'd already started chemo--so my comment about saving hair was unhelpful and insensitive. I apologize.

I'll send you more information on the icing of hands and feet tomorrow. My only other comment is that I would put a lot of weight on ShetlandPony's words--she is wise in these matters, but particularly with ILC.

MinusTwo

Debra - My recurrence was ER/PR negative & HER2+. There are a number of forums that I used to frequent, but I was IDC instead of lobular. Still, I'll see what I can dig out tomorrow. Hang in there girl. We're with you.

Debra1111

Good Morning Shetland Pony ..... Thank You for your interest. "E-cadherin immunostain is performed on selected slide and is negative supporting the diagnosis. The controls worked appropriately". " ER IHC 0 Negative PR IHC 0 Negative HER2 IHC +3 Positive." Knowing the feel of the nodule I am confident of the Lobular diagnosis and the HER2+ gene is definitely a feeling of knowing something was going wacky in my body. It was in 1 lymph node that they clipped during biopsy so it can be removed during mastectomy. 10 years ago my IDC was estrogen positive and I was on Arimidex for 5 years and had both ovaries removed. Kind of makes sense to me that it would show negative for estrogen. My oncologist is happy to see the HER2+ receptor so the THCP course of treatment makes me have hope. Is it that uncommon for my receptors that you have seen from this page ? I have appointment this morning with Oncologist. I will inquire further myself too.

Thank You Minus too and Beesy The Other One. Anything you can share would be appreciated. I was out walking at 7:00 a.m. this morning trying to grasp this road that I have been placed on. Connecting with others feels good.

Beesy_The_Other_One

Debra, here is a link to a thread which discusses icing to protect hands, feet and nails during chemo: Icing to prevent neuropathy

It will give you a good idea of what different women have done.

I used these cool packs. I ordered four, one for each hand and foot. I have no neuropathy and also had no issues with my nails, hands or feet during chemo. The first fifteen minutes I would wonder why I was icing, but after that my hands would get so numb I didn't care as much. I also sucked on ice chips during the T and C portions of the treatment to avoid mouth sores, which I also did not have but I can't say it was because of the ice chips.

MinusTwo

I used frozen peas in zip lock bags - 30 minutes before the Taxotere, all during the infusion & 30 minutes after. The nurses kept my extra set in their freezer and I changed them out 1/2 way through. I never lost any finger or toe nails, so that worked. I did get neuropathy, but who knows if it would have been worse w/o the icing.

MinusTwo

Debra - below are a couple of helpful threads

TIPS FOR GETTING THROUGH CHEMO

https://community.breastcancer.org/forum/69/topics/706846?page=1

ER/PR- HER2+ Roll Call

https://community.breastcancer.org/forum/80/topics/767013?page=1

MinusTwo

And Here's one more

https://community.breastcancer.org/forum/80/topics...

KBeee

I'm sorry you're dealing with this again. I joined the chemo group for my starting moth (both times) and am still in touch with many of those gals who got me through those crazy times. Everyone is different, but I had similar side effects each time (I kept a detailed journal) and for me, just the fatigue was cumulative. I tolerated chemo well, all things considered.