TRIPLE POSITIVE GROUP

thanks hapa! great to hear!

JaBoo, I certainly understand your concern having a close margin. One of my margin's is also close, less than 1mm. I didn't realize it until I was about to start radiation. The surgeon, who was a general surgeon, told my husband that he had gotten clean margins, and I was so freaked out about the Her2 diagnosis, that I missed that little detail on the pathology report.

An article about Dr. Martine Moossdorf's work in the field of local recurrence in early stage breast cancer was published here: https://www.medscape.com/viewarticle/859934

However, because the study included patients from 2005 -2008, it is difficult to know how many of the Her2 + patients received Herceptin, as well as, how many had lumpectomy vs mastectomy.

This past weekend, I found Dr. Moossdorf's original thesis from which this article was derived. You can find it here: https://www.globalacademicpress.com/ebooks/martine_moossdorff/mobile/index.html#p=1

It doesn't provide total clarity but it might be a place to start. If you are a statistics geek (that would be me!), it is interesting reading.

Chapter 6 – Local recurrence after mastectomy for breast cancer in the current era – which subgroups are still at risk. (Very good chart shows the 5-year difference between those who got Chemo and Herceptin vs. those who got chemo alone.)

Chapter 7 – Conditional Local Recurrence: The effect of event-free years on the risk of 5- year local recurrence in different subtypes on breast cancer. (This is the chapter from which the article was taken. Less than half of Her2 patients received Herceptin and it's still difficult to tell how many E+ Her2+ had lumpectomy vs mastectomy.)

Chapter 8 – Conditional regional recurrence for different subtypes of Breast Cancer. (In this one you can compare T1 and T2 node negative tumors with a chart of T1 and T2 one node positive tumors. Again, it is difficult to figure out lumpectomy vs mastectomy and Herceptin/no Herceptin except by extrapolating from the over all data.)

I don't know if this is helpful or not in your decision making, but thought I would share the information with you.

Sending gentle cyber hugs your way.

(Edited to correct second link - I hope!)

Sarah--everybody told me there would be absolutely no SEs from the Herceptin only infusions and that's been largely the case, except I swear I feel a little "off" for a few days afterwards. Nothing to interrupt my routine, and maybe I'm imagining it (I didn't realize until shortly before I started that you get three times the dose you were getting with Taxol), but if you notice anything at all it shouldn't be much.

Hi princess - thank you for the kind thoughts! I am glad your numbers are up and you can resume HP. I think it is wise to have your exchange surgery when the time is right for you. Your mind and body need to be strong and healthy. Coach Vicky always reminds us that WE are in charge of the decisions related to our bodies and I think that is great advice. A good team of doctors will support whatever decision you make and their role is to provide options and accurate facts. My first MO’s approach was more of a “do as I tell you” and whenever I had questions she dismissed them and veered me back to the one track treatment option at that facility. My current MO and PS are much more collaborative and that gives me peace of my mind with my decisions.

Best wishes for a problem free infusion tomorrow. Hugs

Jaboo, I’m glad you feel this is a safe place to express everything you’re thinking and feeling, your post is definitely not long and we’re here to support! The reconstruction decision is very tough. I wanted a lumpectomy because my tumor shrunk so much it was no longer visible but my BS and MO recommended mastectomy. I had 2 tumors far apart and enhancements on the outer quadrant. They did not feel a lumpectomy was the right choice because there was just too much cancer in the breast. However, they did say the choice was up to me. I opted for a Unilateral because I wanted the option that gave me the best outcome to avoid recurrence. I am VERY happy they insisted on a mastectomy because they did find a few single cancer cells left in the breast tissue. So if I would have had a lumpectomy those cancer cells could have been missed. In my opinion a mastectomy gets rid of the diseased breast and for me personally that has given me peace of mind. This is just my opinion and I don’t want to sway anyone in a certain direction. With that said, I think a second opinion might give you another perspective to help you make your decision. Again, this is a tough decision and very personal.

I pray you find the support and peace you need with your decision.

Hello all

I had my first round of TCHP on Monday. So far I’m feeling O.K. I realize it’s different for each, but I’m just wondering if side effects come slowly? Is there anyone that didn’t experience many side effects at all or is it only a matter of time?

hi Cp7865, I’m on TCHP and usually i feel fine for a couple days then after I’m done with steroids some SE kick in. My biggest issue has been constipation, then diarrhea with fatigue. It usually hits me day 3 through day 10. Goof luck and hope all goes well.

Has anyone started getting sores on their mouth? I have noticed a couple of places that are sore but just don’t know if maybe I cut while brushing

thanks sarahnola, I’m using biogenesis and the rinse but I will add a baking soda rinse also to see if that helps

Thanks for sharing your inspiring message, SpecialK! Wonderful news on your 8 years and cheers to many, many more!

--The Mods

Congrats SpecialK!

Wow, SpecialK, thank you so much for sharing! That really is inspiring and fills us newbies with hope... Wish you many healthfull decades more!

Lily - This trial is going in Tampa for women with residual disease after neoadjuvant therapy:

https://www.moffitt.org/clinical-trials-and-studies/clinical-trial-19117

I thought about doing it, but I would rather do adjuvant Ibrance if my MO can convince BCBS to pay for it. You'd have to travel to Tampa for it several times though. But hanging out in Tampa was a sacrifice I was willing to make for my health, lol!

lily - when I was treated neoadjuvent chemo was only done for lumpectomy vs mastectomy, or to achieve margins from skin or chest wall, so I definitely did surgery first. This trial (linked) was a recurrence prevention trial so it was done after my last Herceptin as the focus was to add a preventative aspect to completed treatment. The vaccine is still being tested and hopefully will come to the market sometime soon in some form. The arm of the trial I was in (I did receive the vaccine, not the placebo) did exceedingly well in terms of DFS

https://clinicaltrials.gov/ct2/show/NCT00524277

If anyone is considering the trial at Moffitt you are welcome to stay at my house - I live 10 miles away. I’m serious. I did the above trial in Washington DC - one reason I chose that location (this trial was not offered here in Tampa) is that I lived there for 10 years and had many friends that still lived there and let me stay with them when I flew up for the every six month consults/injections/labs. It was a tangible way my friends could help me and ignore was awesome to spend time with them

trisha-anne - congrats to my fellow Sept 2010 compatriot!

You are wise to quote Winston Churchill - that is exactly what it takes to get through the slog that is TP treatment, right! You don’t have to be brave, you just have to show up.

Thanks so much again, SpecialK.

What let you decide to go for the trial by then? When talking about "higher" risk of recurrence, what are the factors to be considered and what tests are needed to calculate the risk? Who is going to do that for us, MO, RO or BS?

My wife will have the 5th (neo) TCHP infusion one week from today. I believe it is time to think about what the next should be. Of course the first decision would be lumpectomy or mastectomy, then what is next? radiation therapy? HP plus Hormonal therapy? Need to try the nerlynx after one year? How about the trial like you did?...

Sorry for being a confused husband.