TRIPLE POSITIVE GROUP

Danna, congrats on having an action plan! I know it is overwhelming, take it one day, one hour at a time.

Our diagnosis and treatment plans are similar although I did not have radiation or lumpectomy (bmx for me). Hopefully I can help with some of your questions.

Port: my surgeon put a port in my upper arm the morning of my first chemo. This made a long first day but easier in some ways to already have the port accessed. I have had a positive experience with my port. It is out of the way (in the, uh, flabby part of my upper arrm), no pain or soreness at all after the first couple days post-op, and most importantly, the oncology nurses access it quickly and painlessly to draw blood and access the port for chemo. Such a relief as we get weekly chemo and then regular herceptin.

Hair: that's my big question now as I've just finished weekly Taxol and can't wait to see my hair return. The general consensus seems to be that hair begins to grow back 4-8 weeks post final chemo (PFC). With the weekly low dose Taxol, my hair stayed put until week 4 and then shed throughout the rest of treatment. I was able to go bare headed until about week 8 when it became obviously thin. Since then I mostly wear low caps and scarves, but never my lonely, cute wig 😉 I cut my hair really short before chemo and never buzzed it. I'd say I lost about 80% of it.

I never had neuropathy or any nail issues

I just found one FB group: called: HER 2 Positive Breast Cancer Patient / Family Survivors Group

Hang in there!

SpecialK, I see, I thought US was the frontline in this regard, I know that the company that is producing Herceptin is Swiss-own though. Since I am only reading and posting on this forum every deviation is strange to me. But if it is a standard for Europe than I can only tell that I did not feel anything and it was given before my first Taxol infusion.

I called the clinic about the veins and they said to contact them if it will get worse or if I will be feeling sick.

cherry - Roche conducted two trials - SafeHer and PrefHer, all with study locations outside the US, but the studies were registered with the United States NIH clinical trials registry. I don't know if switching from infused to injectable Herceptin would require Roche (Genentech is their wholly owned subsidiary in the US that manages Herceptin) to subject the injectable version to clinical trials here on the path to FDA approval.

Here are the links to those trials:

https://clinicaltrials.gov/ct2/show/study/NCT01401166?show_locs=Y#locn

https://clinicaltrials.gov/ct2/show/NCT01566721

Lita19001, you made my day)) but also scared me before I red the end of it)) I know, and never in my life have I been looking forward to age now, to be able to, was just going and talking my mom about it, that I want to be here. Cherry.

T-Sue, you are done, what a great feeling it must be. If I congratulated you before I am happy to do it again, I am still drowsy from my treatment. When you are saying that you have a port in your arm this is an actual port, like port-au-cath, or how do you call it or is it a piccline? I have been told that there were two choices: port or piccline, mesnwhile portrequired a surgery and had to stay there for two years the piccline can be removed right after the last chemodan infusion. And here they give Herceptin subcutaneously. The piccline does bitne bother me now but in the beginning they pushed it in to deep and I could feel it like against my throat, very odd feeling, but they now pulled it out a bit. Cherry

cherry - sub-Q Herceptin is an advancement, it is us who are behind the times, lol! I am pretty sure a lot of oncologists here would like to be able to use sub-Q because patients would be in infusion chairs for shorter periods, it would streamline things.

cherry - the Lake House is a great movie, and yes - going back and forth has to be kind of interesting. Aside from the initial install of the port I didn't notice it because you couldn't even see it. In my profile avatar picture it is fully exposed right by the hollow of my throat, but because it was a tiny one you don't notice it. I could only tell where it was by feeling around for it. My oncologist felt that the L-Glutamine and B6 wasn't going to hurt anything so I could take it if I wanted to. Same with icing my fingers and toes. I will never know if things would have been worse if I had not done those things - I do know that for the first infusion I got at least a dozen mouth sores, I kept ice in my mouth for all subsequent infusions, no mouth sores.

hap - there is no consensus on what AI has the least side effects - it is pretty individualized, and yes, they can cause hair thinning, but that is definitely not a universal side effect. I have taken several different brands of Femara (the AI my oncologist favors for its performance edge), and one of Arimidex. I have avoided Aromasin due to the steroidal component. Over the six years I have taken an AI I took Femara for the first six months, then switched to Arimidex for a couple of years, then back to Femara, to the present. My experience has been that the fewer fillers and additives the better, as they are often what can cause some of the issues. Each manufacturer should show the list of inactive ingredients in addition to the active letrozole, anastrazole or exemestane. If you have trouble with one, switch to another maker, or another drug. Another option is to switch to the brand name if you have trouble with the generic equivalents, but insurance may not cover - mine does not.

Ok, suddenly I am proud of the Europen approach, If is better to give it as a shot you say then this is what we are having. I was very anxious but it did not hurt.

SpecialK, you are right this port you had is very little, I would have never noticed it on this picture If you would nothave mentioned. The Lake House is one of mine and my mom's favourite movies, I love Keanu Reeves, he is just smocky. I think I got one mouth sore but I am washing with baking soda and salt and I have been sucking on ice for all two hours of my infusion. I will try to get B6, apparently you can get it infused with another meds before the chemo Cherry

Hap - about hair. I am 5 months post Taxol and still have 2 bare spots on top. I have attributed it to my age (and I know we are close), my genes (my mother had very little hair when she died) and previous health issues and not to herceptin or AI's but what do I know. I have never been totally bald before but I have lost significant hair 3 times in the last ten years (twice from the stresses related to surgeries and once trying to get seizure medication regulated). I too am frustrated by this - I actually liked the way I looked totally bald better than how I do now.

It seems to me reading these posts that most feel they do best on Teva but one size definitely does not fit all. My experience after 5 months is that the SE's are different and I am still trying to decide which I can tolerate the best. On "Accord" I had joint pain and on "Teva" I seem to be having more hot flashes and more insomnia. Right now I'll take the latter as I don't have to get up and operate heavy machinery. Didn't have back pain with either.

Cherry, keep showing up here and on the other threads which speak to your issues. Being told I was triple positive really threw me too as I hadn't expected to need chemo and thought my prognosis was better than it is. I don't know where you live but your team should have contacts for local support groups. I the states you could get connected with a local "Bosum Buddies" group just be googling but I don't know if they are outside of the US. Many of us do suffer from PTSD after diagnosis and need some professional help sorting it all out. Don't be afraid to ask for it.

Hi Hapb, I'm sorry that I don't know much about hair growth on an AI. I'm on an AI and haven't lost one hair (started it two months ago). I've heard to things some people take to stimulate hair growth. My hair started coming back quickly after chemo, so I think it's individual.

Danna, I saw your questions and that you got a ton of answers which is so great, so I won't add much . I had a port put in and I found the insertion of it to not be a huge deal. But mine eroded through my skin early on (NOT common) and taking it out was not pleasant!

SpecialK, I saw your comment a couple pages back about being careful where you look online at stats. I have posted this query on the stage 3'ers page as many here are stage 2a or less. But I guess what gets me sometimes is that the difference between one poster on here or a medical article/study or oncologists can differ so much re: stats. I will see reference to the fact that almost all stage 3'ers relapse!!! That's really great to read. And then I'll read something more in the realm of 40% - 50% relapse. But then quite a few posters here and a few oncologists I've heard of suggest it's more like 25% - 30% and less if you got complete response (which is up for debate in the triple positive realm, i.e. prognosis difference based on pCR). I know stats will not make any difference to me personally, but it sure helps the effort toward optimism if I have some sort of a better idea about all this....anything that you've found to be most credible or 'conclusive'?

Sorry to be a bummer to any others reading this, but it seems to be my biggest struggle as I depart treatment.

Hi SpecialK, I am doing the same thing to myself and reading on statistics for my stage.

I have found this article and it says that distant recurrence occurs in as many as 20% of patients. It initially was about the Dana Farber study for Her2 positive early stage but revises even the results of other studies.

http://www.nejm.org/doi/pdf/10.1056/NEJMoa1406281

posey - you had 3rd gen chemo - it usually refers to newer regimens, combo regimens, and that contain a taxane. One thing to consider is what is driving recurrence - is it the Her2+ aspect or the hormonal aspect? Most recurrences that are driven by the Her2+ piece occur relatively quickly - usually inside the two-year point and risk for that declines as time goes on, hormonally driven recurrence usually happens later, although that risk usually declines over time as well, but never completely. Something to consider is whether or not the model used for the tool took longer tern anti-hormonals into consideration. You may want to consider the BCI test at year 5 to help determine whether there is benefit to staying on anti-hormonals to help protect you against recurrence after that 5 year point.

https://www.answersbeyond5.com/what-is-bci

posey - I was aware that PREDICT is a UK site, but it is currently the only one that has decent Her2+ consideration built in. I am hopeful that when they re-tool Adjuvent Online for oncologists it will have updated current treatment included in its risk assessment.

Here is a quote from Dr. Eric Winer at Dana Farber about AC-T. I find cancermath's designations of chemo regimens a bit confusing, and none of them have any option of adding targeted therapy:

"In terms of chemotherapy, in the absence of a contraindication, I would favor a third-generation regimen containing an anthracycline and a taxane. There are many such regimens including dose-dense AC followed by paclitaxel, AC followed by weekly paclitaxel, TAC, or fluorouracil, epirubicin, and cyclophosamide followed by docetaxel (FEC DOC). I personally would favor dose-dense AC followed by paclitaxel because it is the regimen that I am most comfortable with, but any of these regimens are reasonable."

Good luck, LTWJ!!! Hope your side effects are manageable this round.

Hope you don't see much flooding in your area. (My nephew is in Houston; unclear what he's doing.)

Your MIL sounds like a big help; I'm like you, though. I'm a private person, and prefer it to be just the nuclear family at home.

it is beautiful in Boston today. I have decided I need more exercise and am attempting to resurrect my bike that I have not ridden in 15 years. Steve the bike guy has said she can be brought back to life. Yippee!

Started lexapro yesterday after both effexor and celexa failed me. It is making me so...sleepy. hope it stops doing that because it is the only option I have left. Hugs to all!