TRIPLE POSITIVE GROUP

KateB79 · July 2015

Alice12--I completely understand. Stay away from Dr. Google. He's often wrong and sometimes guilty of malpractice. I've been doing a lot of reading about this kind of cancer, and I have to say . . . the prognosis is good. You're stage 1 and node negative. Those are both really good things that bump your likelihood of DFS (disease-free survival) up waaaaaay high.

Here's something, and forgive me, because I really do understand your worry: every day, we have something to think about. Worrying about the future--even as hard as it can be to STOP worrying about the future and stay in the present--doesn't change what the future holds, but it can make the present unbearable. Take care of yourself, in the moment, whether that means taking a walk, having a hot bath, calling a friend, or posting on here. I just got some adult coloring books that are a lot of fun--you might check them out. And don't forget to breathe!

I agree with everyone who has mentioned sense of humor. Fortunately, I have a very dark, very dry sense of humor, and keep finding things to laugh about. Add to that a strong sense of irony, and I think this could be one of my more entertaining years.

I also really appreciate the stats. I'm meeting with one oncologist on Friday and another next Wednesday; I'm thinking of this as a collaboration--2+ brains are always better than one. And, as of right now, mine is working pretty well. My big questions are about my hormone receptor status and how that'll work (both ER and PR were 80% on biopsy), whether I'll need Tamoxifen and/or ovarian ablation, etc. I welcome any and all info.

Thanks again, ladies!

--kate

alice12 · July 2015

kate: thanks for the tips. I have been good in handling this cancer up until today, when all of the sudden I felt down. thanks to reading too much info from Dr. Google.

lago: I did not get perjeta since I already had my mastectomy last month and will start Taxotere Carboplatin herceptin next thursday. My oncologist did not even mention about perjeta before the surgery. I wonder why.

Thank you ladies.

SpecialK · July 2015

Alice - I am betting that your on oncologist did not mention neoadjuvent Perjeta because it is currently only FDA approved for rumors 2cm or larger, or node positive

lago · July 2015

KateB79 The statistics you read online include all in that category:

So say you look at the prognosis for stage I node negative. That includes everyone who did all treatment, some of the treatment or no treatment at all. There are other factors that are specific to you too that needs to be considered. You need to ask your oncologist your numbers.

Lj061197 · July 2015

I just got back final pathology report today. Had lumpectomy last Tuesday. I am cancer free no lump node involvment. I am ER Poitier

my surgeon said maybe chemo??? I have appointment with oncologist next Tuesday hope I can. Last that long

lago · July 2015

How big is your tumor? Most HER2+ cancers get chemo and herceptin unless it is very very small.

wpmoon · July 2015

SpecialK - I find this interesting, because I seem to be an exception. I had adjuvant chemotherapy - my lumpectomy was 12/15/14, followed by 6 rounds of TCHP even though my tumor was 1.5 cm and I was node negative. I didn't realize at the time that my oncologist suggested this chemo regimen that the P was fairly new.

Is it possible that he chose this route because of my age? (I'm only 27) I know that we're being pretty aggressive in my treatment for this very reason.

The variations in our treatment from person to person, and doctor to doctor, fascinate me, even though we may have similar diagnoses.

Anonymous · July 2015

Kate, I interviewed three oncologists. Two had the same treatment regimen, so I went with the one who was closest to my home. Turned out to be the exact fit. Very caring, but very smart and didn't always work inside the box. Indian guy who was a yoga master. He taught classes to his patients twice a week, and they were small classes, so it was like having 3 appts to talk with him every week. Kept me sane. My PS next door was a dry sense of humor like mine, so I had a great blend . My ONC passed away last summer in a freak medical thing, so I had to start over and find someone who I felt would still care and be proactive even though I really had nothing to treat at the time. He's a great guy but not the same.

Ran all over today getting my old lung X-rays all the way back to 2008 when they first saw something. The pulmonologist is going to compare them and then decide if it is something he needs to see me for.

Totally agree on the sense of humor. When I ended up with pseudomona infection and was going in to surgery, I took in a box of Clorox wipes to the surgery room. Whipped them out and said everything needed to be wiped down, hands rehashed, and if anyone wasn't feeling well to get out. Cracked them up. My PS came out and told my husband that he left a wipe in my foob for added protection

lago · July 2015

wpmoon I'm sure your age is a big part of the equation.

SpecialK · July 2015

wpmoon - I agree with lago that your young age has to be a factor, but you are not the only one I have seen receiving Perjeta adjuvently. Some oncs have been able to get insurance to pay for it adjuvently - not sure if they have to do a peer to peer to convince the company that this is necessary, but I am glad you are getting it! Perjeta was approved in the fall of 2013, so there are a number of us who still post on this thread who were not able to take advantage of Perjeta due to the timing of our diagnosis. There are also variations among the choice of chemo regimen, type of surgery, and recommendation for rads (for those who has MX or BMX, automatic for lumpectomy), it is interesting! Area of the country, training and philosophy of the doc, size and orientation of the practice, individual characteristics of the patient and their preferences, etc., can all combine to contribute to the differences in choices.

alice12 · July 2015

Have anyone used L-glutamine during chemo? If yes, May I know the dosage that you take? I read it from another group posting, they said it helped with neuropathy.

Thank you

SpecialK · July 2015

alice - I used it, along with Vitamin B-6. I took 30g of powdered L-Glutamine daily, in three 10g doses. I dissolved the powder, which is pretty tasteless, in a cold non-acidic drink, like apple juice. Don't mix it with orange juice or hot drinks - it will denature it and it won't be effective. Don't mix it with soft food, it will taste chalky. I also took a 100mg capsule of B6 daily.

alice12 · July 2015

special K: does L glutamine help with neuropathy? How many days after 1st chemo does the neuropathy start and how long it will typically last?

Thank you

SpecialK · July 2015

alice - there is no real way to quantify whether it helps. I had tingling in hands, feet and mouth right after each of the first three infusions, but had resolution prior to the next infusion. After the midpoint the tingling and numbness stayed. It took about 3-4 months for it to go away once chemo was done. Would this have been worse if I had not taken the L-Glutamine? No way to know. Each person reacts differently - some get neuropathy right away, for some it goes away, others it doesn't, some never get it. There is no way to predict who will have neuropathy or how severe it will be, so I decided to try the L-Glutamine rather than do nothing.

Lj061197 · July 2015

Hello

I am very new here I found out yesterday that I am HER positive. My doctrine mentioned chemo?? I am IDC stage 1 . Can someone please explain to me what this means and how this effects are survival rate? Thank you trying to stay positive.

wpmoon · July 2015

Thanks SpecialK, I was just curious about how our treatments can differ.

alice - i started noticing tingling at about infusion 4, and it's stayed, even though I'm 4 weeks PFC. I was taking 100 mg of B6 daily. I stopped for radiation. I also have the glutamine powder, but wasn't as consistent with taking that.

Anonymous · July 2015

Lj0161197- I read through your earlier posts and see that you have an appointment with your oncologist next week. The waiting during this phase is so difficult when you have so many questions. The questions about your specific treatment are best explained by your oncologist but I can see from your previous posts that we have a very similar situation in terms of our age, tumor size and ER+, PR+, HER2+, negative lymph node. I had a lumpectomy followed by chemo of Taxol and Herceptin (currently in this phase). I will begin radiation next month followed by Tamoxifen. You might have a similar treatment plan, or some variation but if you are HER2+, you will most likely be recommended Herceptin and Taxol. If you fill out your profile on this site with your pathology they will recommend articles that are pertinent to your situation. It would be good to read up on those so you can have all your questions ready for your doctor next week. I look back on the weeks I was waiting for appointments and I recall how difficult that was. Once treatment gets going, it's easier to focus on what you have to do. Uncertainties add to the anxiety. I keep a quote on my desk to keep me in check: " Today is the day to tackle, tomorrow is only what you are imagining it to be". Feel free to private message me if I can be of any support or answer any questions. I wish you and everyone here all the best.

lago · July 2015

Lj061197 HER2 is a protein that all cells have to tell it to grow. Those of us who are HER2+ have too many on our cancer so it grows faster. Good news… years ago the prognosis wasn't that good but now it's just the opposite. We have so many drugs to combat this that it is one of the better prognosis. Stage I is real early. Your oncologist should be able to give you statistics specific to your diagnosis, including health and age.

Do you know if you are hormone positive (ER+/PR+) too?

Gretagirl · July 2015

Hi everyone. I was reading through the posts being HER2+ but cancer free I searched everywhere for a way to skip to chemo and just do Hercipitn but everything I read pointed to doing both for the best benefit. By the time I saw MO I had had the cancer removed and PET said no more cancer having said that my MO never mentioned Perjeta. I will be starting TCH tomorrow. To those of you who are new here these ladies are wonderful and full of compassion and information! I am sooooooo glad I found this site!

SpecialK · July 2015

Greta - good luck tomorrow! I found the anticipation was worse than the event. Make sure to hydrate and keep track of any side effects so your MO can help mitigate them.

Gretagirl · July 2015

if I drink anymore I am going to need a boat! I have been hydrating and will continue. Thanks so much for the support!!

lago · July 2015

Gretagirl any liquid that doesn't have salt or caffeine counts. I also ate lots of homemade soups. BTW most of us went to chemo and nothing happened. Just a long boring day. Bring a book, ipad or video games.

kdcjjc · July 2015

GretaGirl -

Good luck tomorrow with your first TCH. Mine went well until days 3-4. Lots of fatigue but no nausea. Crazy fatigue over the weekend so basically slept through it. Much better on day 6 - taste and appetite coming back. NUELASTA joint pain is pretty much gone too. No other problems so far.

I am also on the July Chemo thread which really helps with all the stuff you go through right now. Come join there too if you haven't already.

Let me know how it goes.

Suladog · July 2015

LJ,

I was diagnosed last Nov right when the Dana Farber report came out that recommended Taxol/ Herceptin for even very small HER2+ tumors ( I was 7mm) with no nodal involvement. This is sort of the latest treatment for <1cm tumors . My onc was saying last week that they're even recommending it for very small 1 or 2 mm tumors as it seems to be very effective for HER2 people. My former onc in LA at Cedars Sinai said they would only give me hormonal treatment (I had a Mx) but up at UCSF they were saying that T/H was the new standard for my sort of tumor so that's what I di

debiann · July 2015

I know this is going off topic, but I'm kind in shock and trying to make sense of some recent events. A few weeks ago my husband's cousin (63), died from infection 10 days following a routine colonoscopy. Last week a co-worker (55) died at home a few days after a hysterectomy. (internal bleeding). Yikes! Both are potentiality medical malpractice, not determined yet.

After dx I spent so much time thinking about dying. These passings hit home the reality it can come to any of us at anytime. I'm now feeling lucky to have just survived treatments ( chemo & 2 surgeries).

This all comes as I'm trying to decide on a possible 3rd sx to fix the appearance of my left diep breast. The right breast looks wonderful, but left one is larger and has a bit of a funky shape. PS said he can do one more sx to try to fix it. While the problem really bothers me and I'd love to have it improved, I'm now really leery about electing another sx.

Should I just be grateful that I got this far with no complications or should I try one more time to get results I'm happy with?

Love to hear everyone's opinion.

ElaineTherese · July 2015

debiann,

I know what you mean about sudden deaths giving you pause. My DD's softball coach died over Winter Break after getting an infection from routine gallbladder surgery. (He was only in his late 50s.) We couldn't believe it!

But, most low-risk surgeries DON'T end that way. I don't know how old you are, but let's say you're going to live at least another 20-25 years. Can you live with your funky breast that bothers you? If PS is willing to give it another try, and he thinks it's a low-risk surgery, I'd do it.

tonia52 · July 2015

Greta,best wishes to you tomorrow. I find that eating before I go to my taxol herceptin treatment helps. My treatment takes about three hours and I use ice on finger tips and toes to prevent neuropathy. I will be on my seventh treatment next week and doing very well so far on these treatments. They are not near as bad as the ADR treatments. Take care and we'll bet praying for you!

tonia52 · July 2015

hi Suladog, I feel so blessed to be able to take the herceptin for future prevention. I will have to take it for a year every three weeks thirty minutes. I plan to go on my lunch hour. I'm in the middle of taxol treatments. I'm not sure if I will be placed in Tamoxifen. I was pushed into early menopause from the taxol. I kept my cycle thru ADR but lost it after the second or third taxol treatment. Can you tell me how the arimidex makes you feel?

Blownaway · July 2015

Greta - I taught myself to knit during infusions with You Tubes on my kinndle fire. It passed the time and also relaxed me. So many of he ladies on his site advised me to ask for longer infusion times and to speak to my onco about all the various steroids that can be given to eliminate nausea and other side effects. Five different steroids were recommended and I had received all but "Emend" during my first infusion and was nauseated the next day. With the advice here, I asked for and received Emend and was never nautious after the first time.

debiann · July 2015

Thanks so much for your thoughts Elaine Therese. I'm 54, so hopefully have many more years.

Blown away, you learned to knit during infusions? Amazing! All I could manage to do was play mind numbing games on my phone, lol.

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