TRIPLE POSITIVE GROUP

__asher__ · June 2016

I did THCP with Neulasta and the Claritin worked like a champ. I didn't take it with my first round and that was brutal.

namaste5 · June 2016

Hi. I was diagnosed this spring. I had a double mastectomy direct to reconstruction. Since I am HER2+, I've been advised to undergo adjuvant chemo therapy. I was blown away by this. I thought I was on the clear since my cancer was relatively small and caught early.

Now that I've accepted this fate, I'm deciding on the best treatment and I need help! I saw two oncologists and they recommended different treatments.

The first MO recommended Taxol+Herceptin. The other MO recommended TCH. It is my understanding that TH is milder, more commonly used now but doesn't have long term efficacy statistics to back up it up like TCH.

Of course I want the mildest chemo possible due to side effects and toxicity, but if I'm doing this I want to be sure it will work and prevent reassurance for as long as possible!!

Advice on choosing between these 2 treatment is welcome!

Jlb2016 · June 2016

Namaste5 - we have the same dx and like you, I was blownaway and trumped by the her2 dx. I am on TCH. Hang in there.

ElaineTherese · June 2016

For a relatively small cancer like yours, many patients do have the opportunity to do Taxol + Herceptin rather than TCH. Taxol is supposed to be the gentler cousin of Taxotere, but it still has side effects. I did four infusions of AC before TH, and TH was a milder regimen. Whereas I felt like I was in a mental fog (chemo brain) on AC, I felt mentally sharper on TH. But, TH is weekly whereas TCH can be every other week or every third week. So, there's less time between infusions to recover from the last one. Both TH and TCH can produce gastrointestinal distress. Both can cause neuropathy (numbness) in your fingers and toes. Both can cause fatigue. One (very rare) side effect of Taxotere is permanent hair loss. A few women on BCO.org have experienced that side effect but the vast majority have not.

Good luck!!

lago · June 2016

Mommato & Elaine Taxol actually has more issues with neuropathy than Taxotere. That's why you get it weekly (smaller doses but more doses) instead of dense dosing every 3 weeks like Taxotere. Less harsh on the body. They are from the same tree.

namaste5 · June 2016

Jlb2016, Thanks for the response. How is treatment going for you and how far along are you? Did you have the option of taxol + Herceptin or just TCH?

Best.

KateB79 · June 2016

So . . . I think Zoladex is messing with me.

I was doing really well on tamoxifen alone: the hot flashes were getting better, the mood swings had gone away, and I felt great! I had my first Zoladex last Wednesday, and now I'm retaining water, have hot flashes on and off all day, was up late into the night with dizziness and anxiety, and--get this--now my ovaries hurt. This isn't cool, and I'm pretty sure the 2% overall reduction in risk of recurrence isn't worth it. My oncologist was surprised that I agreed to it in the first place, for whatever that's worth.

I'm thinking of pulling the plug on it, but then again, maybe I should give it another month or two. Either way, I have to get through the next three weeks with the thing dissolving in there. . . I'm really tired of feeling like a science experiment, you know? Anyone have any thoughts on the matter?

ElaineTherese · June 2016

Ugh, Kate. I don't have the same response as you do to Zoladex, but then again, it's hard to sort out which are the side effects from Aromasin and which are from Zoladex because I started them at the same time. At least you began Tamoxifen first so you can distinguish between the side effects of the two treatments. Maybe the Zoladex side effects will diminish after a week or so? You just got your Zoladex; you have four weeks to decide whether you want another shot. Yeah, I'm not sure 2% overall reduction in risk is worth it, either. At least you were tolerating Tamoxifen well. That's probably more important than doing the Zoladex, too.

NattyB · June 2016

Namaste5 - I have the same diagnosis as you - I was only given the option of weekly TH (no C) and a clinical trial (which I decided not to do). I have had 2 of 12 so far then H only every 3 weeks for the remaining 9 months. So far it's been very manageable and I'm grateful for that. After these 12 rounds we will have the discussion about my ovaries and Tamoxifen.

Mommato3 · June 2016

Kate, I didn't have any side effects from Tamoxifen alone. My side effects came from chemopause. I had hot flashes and mood swings. They eventually started to go away and I felt fantastic! This was my clue that I was coming out of chemopause. Sure enough, my blood test showed me premenopausal again. Ugh! My MO wanted me to switch to OS and AI. This was shortly after the trial came out stating OS + AI had more benefit. The hot flashes came back after my Zoladex shots. But, I switched to an AI instead of Tamoxifen. I've had some side effects off and on over the last year. Mostly stiffness but a little muscle aches and mood swings. The last couple months I've felt really good. 2% reduction doesn't sound like a lot. I was thinking my reduction was more like 4-6% when I looked at the study last year. Ask your MO for your recurrence risk with and without it. I will say this, one month isn't a lot of time to allow your body to adjust. It could take several months or longer. Every person reacts differently.

Karenbo · June 2016

Namaste5 - My tumor was small and caught early similar to yours. I completed 11/12 weekly Taxol + Herceptin in March. Skipped the last one with my MO's approval due to an increase in neuropathy and both of us feeling I'd received enough Taxol to be effective. Now am getting Herceptin alone every 3 weeks through November. Almost all of my neuropathy is gone now (had only been mild, intermittent in fingers and occasionally a few toes). Biggest SE was fatigue and hair loss. Only mild intermittent nausea, some nail changes and only mild transient SE. Hair is now growing back rapidly and energy level is getting better all of the time. I've been on Tamoxifen for 6 weeks; other than annoying hot flashes, that is going pretty well also. Hope your treatments go well!

Jlb2016 · June 2016

namaste5 - TCH is the standard of care for this case in Ontario, Canada. Taxol +herceptin was not an option for me. Most early stage cases are treated with this protocol here. This too shall pass. Hugs to you

Musosgirl · June 2016

Namaste, it wouldn't hurt to start with TCH and see if you tolerate it pretty well. I eventually had to switch my taxane (taxotere and taxol are in the taxane family), and we did it again later (to abraxane). And we dropped the Carbo my last cycle. They can always treat SE and then change the meds as you progress, so don't feel like you are choosing one or the other and you are stuck with it. Just keep open communication with your doctor!

Tresjoli2 · June 2016

i JUST finished treatment and had my port removed. This morning in the shower, I felt a lump in the other armpit (my right, cancer was on left). I had a Lupron injection scheduled for today..so showed my NP at the cancer center. She felt it too, and wants an ultrasound. :-(

I just switched jobs so I have to wait for my new health insurance to kick in before I can get it scheduled. :-(

This is not happeneing...this is not happening...this is not happening....

lago · July 2016

Tresjoli it could be a cyst.

debiann · July 2016

Lumps pop up for all kinds of reasons. I get crazy worried about every lump and bump too, but usually there is a benign explanation. My husband just had an ultrasound for a lump. It was a normal lymph node just doing its job after he strained his arm working in the yard. Positive thoughts that it turns out to be nothing.

KateB79 · July 2016

This may or may not help, but I've been freaking out re: dizziness and fatigue, thinking I have brain mets, when the most likely explanation is that the sudden shift in hormones caused by Zoladex is causing the dizziness and fatigue.

I guess what I'm saying is that it's natural to go to worst-case-scenario with every lump, bump, and symptom, but it's far more likely that those lumps/bumps/symptoms AREN'T cancer.

Sending good vibes to you, tresjolie. Hang in there, sister.

SpecialK · July 2016

tres - fingers crossed for an innocuous finding

BarredOwl · July 2016

Tresjoli2:

Sending wishes for a clearly benign finding.

BarredOwl

Tresjoli2 · July 2016

Thanks guys. Wish I didn't have to wait three weeks to have my insurance back in place. I'm calmer today...it will be what it will be. I'm sure I'm fine and will update after the ultrasound.

fightergirl711 · July 2016

Hang in there Tresjoli2. It's likely just "one of those things." But the waiting definitely does not help I'm sure!

__asher__ · July 2016

Sending positive, calming thoughts your way, tresjoli

ashla · July 2016

Tresjoli2

Most of us here know precisely how you feel. Lumps, bumps, aches and pains are part of being humans. Sadly, for those of us who have had cancer..they can no longer be dismissed.

We will all face this at one time or another...

"Let us not look back in anger, nor forward in fear, but around in awareness." James Thurber

Try to enjoy your holiday weekend. We hear you.xoxo

Oh..And good luck with the new job:)

Zoziana · July 2016

Tresjoil: It is hopefully nothing, but it shows you are paying attention to your body, so if it is something, as least you caught it. Sending you positive thoughts!

Yoshi_Falls · July 2016

Hi HelenWNZ

Just wanted to let you know there is another triple positive kiwi girl here. Good Luck with your treatment. They will throw everything they have at this. Kia Kaha!

I'm a year post diagnosis and feeling great. My surgeon didn't stage me because my tumour was large relative to the size of my breast so most likely a stage 3 rather than stage 2 as the official staging goes.

I'm doing great now. Back to running everyday and even got a brand new job last week. You will make it through the other side of treatment too. Along the way you will meet some awesome people.

xx

HelenWNZ · July 2016

Hi Yoshi Falls good to hear from you. I hope a year down the track I am as positive sounding as you are.

I was born in Wellington. We travelled around NZ a lot and I also lived there in my teens - Titahi Bay.

Tomorrows my first oncology visit and have been told I will have a plan when I leave the appt. Top shelf all the way......

I'm just concerned that how fast things have grown and spread that the ct scan taken in may still shows no distant spread.

I have been really humbled by people coming out of the woodwork in support so agree with you there.

All the best with your new job.

Helen

Yoshi_Falls · July 2016

Like you and just about everyone else here you start off with the absolute fear of spread and thinking that it has spread further than they have found in the scans etc. I was exactly the same. They initially found spots on my lungs and liver and I had to have these re-scanned half way through my chemo. It wasn't until the second scan when they decided that they were most likely benign that I could finally exhale and feel like I was healing from stage 2/3 rather than stage 4. It is completely normal. It's so hard in the early days of diagnosis not to second guess everything. You will feel a lot more positive when you start treatment. Everyone has a turning point some way along in treatment and the fear will subside. We are here to support you!!

I've met some wonderful women of all stages during my chemo room treatments. One of the women I met has been stage iv for 24 years. They only diagnosed her as HER2+ in the last couple of years (so she has only been getting the herceptin only for about 2 years - they had never tested her tumours for HER2 before then). She's had it in lungs/bones/thyroid. She is still going strong. Another triple positive woman I met has been stage iv for 10 years and is still really healthy and going strong.

Lots of other women I have met through a local support group are well out of treatment and living disease free healthy active lives. We will be the same. My Breast surgeon told me that never to look at on-line stats as by the time we read them the subjects are 10 years out of date. Treatments and protocols change a lot in this time.

Where are you based?

Look after yourself and good luck with chemo. It is hard at times but manageable.

HelenWNZ · July 2016

Thanks!

I live in Invercargill now. It's a bit tricky treatment wise - I will have chemo here but radiotherapy will be done in Dunedin so it will be a bit of an upheaval but doable.

It's great to hear about long time survivors as I have absolutely trawled the net and have taken on board too many bad things about my type of cancer so have stressed out so much in the last three months.

Now that I'm getting down to the business side of things I have calmed down a bit.

Anyway will hopefully know more tomorrow.

Definitely catch you again hel

lago · July 2016

Yoshi if your tumor was over 5cm and have node involvement you are at least a stage IIIA. But you would get the same treatment regardless of stage

Helen and Yoshi Welcome. My family almost moved to New Zealand when Nixon got in for a 2nd term as president (before your time I bet). If Trump gets in I might consider… I've seen photos and it's beautiful. Also hear there are jobs!

Jerseygirl927 · July 2016

tresjoli, think positive, maybe nothing , be safe, get test done, you must have cobra or something, or go to clinic till your ins kicks in. I had port removed jun 6! And still have lumpies were the port was, do not like the scaring, still scabby and crusty and lumpy. Not a happy camper either.

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