TRIPLE POSITIVE GROUP
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Bird-Oh my! So glad you are okay. Agree with protein recommendations. If your digestion is off (not sure you are on chemo etc or not), try pure rice protein. Super easy to digest, can be added to just water or mix in with rice milk, almond milk and ice or frozen banana for smoothie. Easy way to add 25 grams protein in one drink. It is admittedly a little grainy in texture, but I personally do not mind at all. I found it on Amazon (look for one that is pure rice protein.)
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I have been on lupron for a year. Lupron and tamoxifen together. My GYN insisted I keep my ovaries. My MO and GYNare currently debating how long to keep me on Lupron, but it will be at least two years and we will re-evaluate.
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I got my pathology results back today and am now am freaked out more.
35mm grade 2 IDC with prominent micropapillary component present.
Extensive Peritumoral lymphovascular invasion seen admixed intermediate grade DCIS present
ER8 PR6 HER2+
Resection margins 6mm from inferior >10mm all other margins
Extensive axillary disease present 18/22 nodes with extensive extra nodal spread evident.
All gross macroscopic disease was excised from axils at the of surgery.
Now on to chemo, herceptin plus radiotherapy and hormonal therapy.
Doesn't look good for this 52 year old body who had a clear mammography 21 August last year.
Anyone have any words of wisdom.
Thanks
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Helen - I'm so sorry you are going through this cancer crap. Remember that our triple positive status responds very well to treatment. I'd say follow your feelings - scream, yell, cry, kick, - allow yourself those feelings. Get a good support team to surround yourself with and lean into them. I've been told by some very wise women here that now is the time to focus on yourself. Keep positive people around you to create a peaceful and positive environment . Share with us - I'll be thinking of you.
Hi ladies - just got the all clear from my PS to start chemo this Thursday. I little nervous ! Any helpful tips for my first round of TCH?
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Healthet
Infusions take several hours and the first is usually longest because they go slowly and watch for side effects. My first took 8 hours!
Dress comfortably. Bring stuff to keep you busy. Bring food and drinks. Hydrate! Some places feed you.
Take your anti nausea meds.Keep a diary of your symptoms ... (Physical & mental) so you can see patterns and hopefully stay ahead of future side effects & problems.
Day 3 you can clean your whole house in an hour while you're on your steroid high ! Then you'll start your chemo pattern. Each of us has a different one but it is doable. With some exception you will likely be able to continue most of your activities with a few alterations.
Best wishes to you!
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Helen WNZ
There are several women in this forum with very similar diagnoses to youand I am certain one will pop in to guide you.
I reiterate Heathet's point. Her2 pos cancer despite its aggressiveness now has one of the most positive outlooks of all breast cancers .With the discovery of herceptin and several other treatments that piggybacked off of it you have reason for great hopefulness .
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Heathnet,
Ashla has given you some good advice. I second her advice about staying hydrated and trying to stay ahead of symptoms. It may help if you have some over the counter meds for diarrhea and constipation on hand. I was only on Taxol, Taxotere's gentler cousin, but it gave me mild diarrhea (which I controlled with Immodium). Once I had the diarrhea under control, I sometimes had constipation! Aargh. Best wishes to you!
Helen,
Yes, it is scary to be Stage III and to have nodal involvement. Just remember that HER2+ treatment is a marathon, and you have to take it step by step. They say that 70% of life is just showing up. Well, 70% of fighting cancer is just showing up for your appointments, and there will be lots of them. Just remember that treatment isn't forever, and that you can get through this! Best wishes!
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hi all,
On tumor markers, mine doesn't really have faith him them. I talked him into the ca 27-29, but it doesn't really tell much about cancer in other places. I really wanted the circulating tumor cell test, but he won't do it as he says it asks more questions than it answers.
Personally, I want all the tests lol. Pet scan every couple years, etc. then I'll probably drop from a heart attack.
I've never liked surprise parties
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Helen, your fellow IIIC friend here...I was 45 at diagnosis and am still kicking. I know it seems unmanageable right now, but everything will come into clearer focus as the days, weeks, and months progress. Ask tons of questions until you feel that you fully understand your diagnosis. Write down all your questions beforehand so you don't forget what you want to ask, and ask your doctor if he/she is okay with being recorded. I digitally recorded all of the early appointments for later transcription, because at the time my mind was blown & I couldn't keep things straight in my head out of fear and panic. Now I look back at my (very very very long) document concerning my cancer treatment and can evaluate things calmly.
Give yourself room to be scared. This is the time for that (and it's that time as long as you need it to be). The mind and body, strangely enough, can only be on high alert for so long before things normalize. I think this is the key to getting through all traumas, though it has to be lived through to be understood.
Heathet, good luck with your first chemo! I had a wheeled cooler in which I had books, my iPad with headphones, snacks, etc. I took that cooler everywhere & kept it prepacked as much as possible so it was ready to go for every chemo session. It reminded me of having the diaper bag packed when my kids were little.
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thanks JenPam it's the ups and downs. Sometimes I cruise along quite nicely then something throws me off balance. Two steps forward and one step backwards. I'm my worst enemy by googling everything but just can't seem to stop.
I'm still a few weeks away from chemo but liked your message to heathet about going prepared to each visit.
My other half is very grounded and hears what I don't
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HelenWNZ stop googling. I was convinced I was going to die when I googled my initial biopsy results. Found out lots of that info was old or too generalize to apply to my diagnosis… Here I am almost 6 years NED! I know a few stage IIIB and C that are doing well that were diagnosed the same time as me too.
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Thanks Lago - I know I should stop but google is very addictive. My kids are my google police and they tell me off all the time. Too much spare time up my sleeve is the problem. Once I am no longer in the queue waiting and am proactively doing something about this then hopefully I will start to get a better grip on things.
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that seems to be the new norm, i am 65 and they are saying 5-10, but when im 75 will re eval my body and seehow good or bad it feels. All i know is the hot flashes are pretty reguler now, almost daily, which to me means i am still making hormones steadily.
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Jersey...those hot flashes don't necessarily mean you are making estrogen. On Tamoxifen, I had miserable, dripping almost panic attack flashes two-three times an hour. My estrogen tests showed little to no estrogen in my system. Side effect of the drug. When I was switched over to Arimidex, there are many things I don't like, but the one good thing is that the hot flashes are milder, which was a huge relief.
Helen...the google queen here. I read and research as much as I can.
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if I'm just getting a dose of Herceptin today do I need to ice my fingers or toes? I know I will tomorrow with the chemo.
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Heathet, as far as I know, there is no need to ice with Herceptin only. Herceptin does not cause neuropathy.
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No need to ice with Herceptin, though I do suggest having them run it over an hour instead of 30 minutes.
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I had no problem getting herceptin in 30 minutes. If you find you are having issues then next time I would suggest 60-90 minutes.
Neuropathy and nail lifting is an issue with Taxotere and/or Taxol. Hercepin isn't chemo and doesn't have those side effects.
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my herceptin was okay, but over an hour time. I would get red patches in the beginning, but after time nothing. Still keep an eye on shortness of breath or rapid heart rate on exertian.
The hot flashes are terrible on femara the arimidex not so bad, but the insomnia bad, so when i go to MO in august will discuss those side effects. And growing a beard is not so nice, hair down my throat. Yuk
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I didn't have any problems with getting my Herceptin over 30 minutes either. But like everyone else says, run it over 60-90 minutes if you start having muscle aches and pains.
I did twelve weeks of Taxol. No issues with my nails lifting but they were definitely weaker. Didn't take much to break one. Neuropathy was an issue towards the end. Taxol is a gentler cousin of Taxotere so that may be why I didn't get as much neuropathy as others.
Heathet, do you normally get your Herceptin the day before chemo? I've never heard of that before. I always got my Taxol, Herceptin and Perjeta on the same day.
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minneswede - I don't think injectable Herceptin is FDA approved yet in the United States. I believe it is currently being used only in other countries, as per approval by the European Commission. Here in the US, Herceptin comes from Genentech, but Genentech is owned by Roche, which is a Swiss company.
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Mommato3 - this was just a one time deal. They wanted to make sure I tolerated the Herceptin well. All my other infusions will be done in one day.
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SpecialK, that is a bummer! My MO is having my PS take out my port when I have surgery at the end of July. But I have one last Herceptin infusion after that which we will do through an arm IV. A shot would have been nice!0
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musosgirl - a shot would be nice but I bet you will be so excited by getting the last H done that you will hardly notice having to have an IV! Happy for you! Ridiculously, I still have my port - I was diagnosed in 2010! It was supposed to be removed with a reconstruction surgery last month, but I had an abnormal PET scan a week prior, so my MO vetoed removing it until they could see what the biopsies done during that surgery revealed. Turned out to be a bunch of benign stuff, so hopefully the port will come out when I have some fat grafting done later. It had not been flushed for a couple of months since it was supposed to come out so I did that yesterday - worked like a champ!
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so I'm getting my first infusion of taxotere and I'm having wicked back and chest pain. The nurse stopped the infusion and I'm getting a dose of Benadryl. Hopefully that helps - I feel like crying! Anyone else have bone pain or chest pain with taxotere?
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heathet - this happens sometimes, and the problem is often solved by slowing the infusion also. I routinely got Benedryl as a pre-med from the beginning, so hopefully it will help you but don't hesitate to alert the nurses if you feel things are not right. Scary, I know. Are you receiving Neulasta tomorrow? If you are, it can also cause some bone pain. If so, I would recommend that you take a Claritin (10mg loratidine, 24 hour formula, not Claritin D) later today and continue every day for at least a few days after the injection.
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Heathet, keep communicating with your nurses. We did Benadryl and slowing the infusion down. After a few treatments we switched to Taxol and finally switched to Abraxane--they are all in the same family. There is always something they can do to help!0
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Heathet, I had taxotere for my last 3 infusions, took claritin starting the day before chemo until 4 o 5 days after, minimal bone pai
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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.
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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!
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