Taxol and Herceptin only for stage 1 HER 2 positive?

Suladog · February 2015

bbwithbc45,

I asked my Dr he had no problems with any of the L Glutamine I bought powder from Pharmaca, Whole Foods also sells it. I take 3 tsps in half a glass of water 2 times a day. As to the vitamins he has no problems with it. He works with UCSF which is where I had all my surgeries and consultations. He said a lot of his patients take L glutamine as it helps prevent neuropathy, it also has to do with the immune system and energy. Just make sure you are taking the right amount

MaggieCat · February 2015

Chiming in ....I'm also on L-Glutamine and B-6.... 3 scoops (15 g) twice a day of L=Glutamine (powder form, mine is from Mercola), and 2 - 50 mg tablets B-6, which is the maximum daily dose of B-6. Both recommended to minimize neuropathy issues, guidance was given by my MO. I'm also taking biotin and D-3 along with my daily vitamin/mineral supplement and probiotic.

BBwithBC45 · February 2015

Thank you, Ladies. It looks like I bought the wrong thing then. I suppose I should try to exchange the L-Glutamine pills for the powder?

MaggieCat · February 2015

BB.... Don't think you bought the "wrong thing"... just not the best way to take the amount needed!!! If your pills are 1000 mg ( or 1 gm) each, then taking 15 pills twice a day gets you the dose many of us are taking.. Using the powdered form is easier and less expensive. My approach -- I started with 15 gm per day and worked up to the suggested 30 gm... did the same with other supplements that weren't part of my pre-BC daily ritual!

PatinMN · February 2015

BB, yes you should get the powder. In order to get the recommended 30 grams per day you'd have to take 30 of the 1000 mg pills every day! The powder doesn't really dissolve - it just sort of suspends in whatever you mix it in. I was told to use it four days a week - day of treatment and subsequent 3 days. I was relieved on the days I didn't have to take it! My chemo nurse also suggested continuing to use it for a few weeks after finishing chemo, but I ran out of the powder and was so sick of taking it I didn't buy any more. Wouldn't you know I developed a numb big toe about 3 weeks PFC. The numbness persisted for a very long time. So the moral of the story is...continue using it for a few weeks after treatment!

Anonymous · February 2015

I took acetyl l-carnitine and l-glutamine, as well as b vitamins. I had very little neuropathy. Some tingling of finger tips, and my feet were like ice cubes all the time. My husband would warm the end of the bed for me and bring me hot water bottles and heating pads for my feet.

BBwithBC45 · February 2015

Thank you, all. I went back to the store and exchanged the pills for the powder

findmewdw · February 2015

MarieNJ,

Thanks for your information. We had to postpone my mom's chemo again, but are scheduled for this Friday. Glad to hear you are doing well. Good luck!

I see that many take Lglutamine and B6. I will definitely ask about my mom taking this. I feel like we should ask before she starts taking this. I did ask her dr about any supplements that she should start taking when we met him last and he didn't recommend anything other than a regular vitamin. Since so many of you seem to think this helps, I want her to try it. Thanks so much!

colleen1013 · February 2015

Thank you, Suladog. It seems that steroid keeps me hungry, hope that I won't gain too much weight after chemo.

Suladog · February 2015

colleen1013,

Just eat healithly and you'll be fine . I'm small and my weight was fine through my first chemo 25 yrs ago and now als

TTfan · February 2015

One online source of glutamine powder is bulksupplements.com. It was about $30 for 1 kg which is about a month's worth at this dose. I liked it better than the stuff I got at GNS because it dissolves better and I don't mind the taste at all.

Re weight gain - I always went up a few pounds about 3 days after infusion - I think it was fluid retention, then back down by the next infusion. I weighed exactly the same at the end of the 12 weeks as I did in the beginning. Everyone is different of course. I had lost almost 10 pounds between diagnosis and starting chemo - I'm a stress non-eater rather than vv. I ate whatever I felt like during chemo - didn't make myself stick to my typical more healthy diet.

MaggieCat · February 2015

Thanks TTfan for giving me a name for what I do... "I'm a stress non-eater"! I'm petite, so 5 lbs means more weight (by %). My weight gain has been a "topic" during my last two MO checkups. I've done my best to explain that the first weight they recorded "wasn't me". Now I have the "words" ---> stress non-eater!!! The last time I saw the 12/16/14 weight was, well...a while back (think early 1980s and gym workouts to "She's a maniac, maniac....")!

TTfan · February 2015

Happy to be of service . My stress eater partner can't fathom my opposite response and it is taboo to mention in some circles since it makes most people jealous to the point of eye rolling.

Suladog · February 2015

I'm a stress non eater also and so dropped quite a bit before my first chemo but things have balanced back out, of course the slightest mental glitch and I'm off agai

BBwithBC45 · February 2015

I do this too - when I am extremely stressed I can't even look at food

colleen1013 · March 2015

My period is over two weeks and makes me a little bit anemic, lysteda only reduces the flow but cannot stop it. I may need to do endometrial ablation to stop the heavy bleeding. Does anyone have the regular period during the chemo? I am reluctant to have a surgery during the chemo even though it is a simple procedure. The nurse refuses to use my left arm for infusion, I only have one lymph node taken out, my MO wants me to put mediport to save the trouble. Both my kids are running a high fever these two days, what a week....

BBwithBC45 · March 2015

How soon before the first chemo should I start taking L-Glutamine? Does it need time to build up in the system, or should it be taken only on the day I start treatments? I start the day after tomorrow by the way, so should I take it today already?

Also, I'm a little confused about the icing of feet and hands. My chemo nurse said that in order to avoid neuropathy, I should make sure my hands and feet never get cold. She even said I should use gloves when taking anything out of the freezer or even fridge. These are two extremes. Am I misunderstanding something?

Thank you,

BB

SpecialK · March 2015

I took L-Glutamine and started same day as chemo - 30g in 10g 3xday doses, powder dissolved in a cold drink - not a hot one, and not mixed with food, and continued throughout chemo. I also iced, but not for neuropathy prevention - it is done predominantly to prevent fingernail lifting, which is a side effect from taxane chemos.

http://jco.ascopubs.org/content/23/19/4424.full

Anonymous · March 2015

I did the same as Special K, but also took acetyl l-carnitine. Also iced my fingers and toes. Here is a tip...yu will look ridiculous, but someone on this site mentioned it and I did it.

Get four insulated lunch containers. Two that your feet will fit in and two that your hands fit in. Put the ice, or whatever cold stuff you are using in a plastic bag and then stick your feet in, zip it around and then do your hands. Take them out every fifteen minutes or so to avoid frostbite.

The nurses would laugh their heads off, but then they told everyone else what a great idea it was. My nails came through just fine, and didn't get bad until I was doing the dose dense herceptin. Then they just thinned out so they were so soft that they werent hardly like nails. Pretty painful and they were really sensitive.

Suladog · March 2015

Okay, I have a question. I just finished my 5th (of 12) taxol herceptin treatments, so far so good. I have had the usual symptoms but manageable. Then, the day after my last infusion on Friday I started getting a scratchy throat, runny nose, as though I was coming down with something, but it hasn't progressed. In other words, it isn't any better and it isn't any worse. I called my mo, talked to one of the RNs who told me it could be a cold, but that it could just be a side effect. Does anyone have any way of knowing?????? I'd love to know if this is just something that comes along with, as I've read, or if I can give this to somebody? They said they don't give chemo to patients with colds, but how do I know whether I have a real cold or just a side effect??

DaniellaD · March 2015

I had a sore throat, runny nose and headache throughout treatment. Now with just herceptin, I have headaches and a constant runny nose - typical SEs. My onc nurse said maybe a cold when I described a sore throat every week, too. It wasn't a cold. It was an SE. almost at the halfway mark! I will tell you that weeks 6-9 weren't as easy. Then for some reason I rebounded for 10-12. All in all, the SEs just become more annoying. Good luck

Anonymous · March 2015

I can't speak to the scratchy throat, but the runny nose is classic herceptin. It never went away the whole time I got it, and got better about a month after I finished. Go nowhere without tissues handy as it will start to run without notice, and without nose hairs etc, just goes and goes.

Don't be surprised if you get bloody noses either.

Suladog · March 2015

I've already had the bloody noses, and everything you guys have said is a big help. I'm about halfway through as you said and so far there's been no problem ( well not much) we even went back to work on a new project. I felt great, right now however writing is the last thing I want to do. I'm hoping that out the other side of this I'll feel better.

We worked all though chemo the last time 25 yrs ago on CMF as we didn't want anyone at the studio to know I was sick , this has been much easier until today. Counting on that week 10 bounce back. Also I'm hoping this kind of getting a cold feeling is not something that's going to go on for the whole 9 mos on herceptin. My MO says when I'm done with the T/H herceptin alone is a walk in the park, but I don't know what parks he's been hanging out in.

MaggieCat · March 2015

Runny nose, watery eyes, count me in also! "Typical histamine response to herceptin" was my MO's comment. Benadryl (25 mg) helps me when I need to stop the flow for a dinner out, etc.

Suladog · March 2015

MaggieCat,

The Benadryl sounds like a good idea, I'm going to ask my mo

colleen1013 · March 2015

I am in my #2 infusion. Tomorrow I will have NovaSure endometrial ablation to stop my FOREVER period bleeding, hope that Iwon't have FOREVER discharging afterward. I have the running nose, watery eyes also, it is allergy season, every year I need to take allegra through the season, now I prefer to take Benadryl, at least it can knock me out at the night time. I read the previous posts and buy Ayr saline nasal gel, it works great to my dry nasal, sore throat comes and goes, I have two kids taking turn to have a cold, if I don't have a fever, I will say it is a SE.

CuriousCarm · March 2015

Hi Everyone,

I am new to this thread, but have been reading the entire thing over the last month as I waited for my pathology results. I finally got good news yesterday and found that my margins were clean and lymph nodes were clean. So that places me in stage 1. I assume 1A. The tumor is 1.3 cm and a grade 3. Hormonal receptor negative. However, I knew this all when I did my biopsy so was fine before I saw one sentence, which was LVI positive. This is something new I wasn't aware of. My surgeon and oncologist didn't mention it to me, but I saw it on the pathology report afterwards. I will be doing taxol and herceptin. Are any of you also LVI positive and is this a concern? Will taxol and herceptin help with this?

MaggieCat · March 2015

Howdy Curious! With taxol and herceptin as the planned approach, am I to infer Her2 positive?

Had to look up lvi once again. "Lymphatic and vascular invasion does have prognostic significance and is primarily used to make decisions for lymph node-negative patients with borderline tumor sizes."

My er/pr negative, her2 positive tumor, grade 3 was 1.2 cm, so very similar finding if you are her2 positive. For me .... there was chemo in my future - 1.2 cm wasn't borderline and Her2+ meant hit it hard!

Will be interested to read others' thoughts! Maggie

CuriousCarm · March 2015

Hi Maggie,

Yes i am HER 2 positive. Not sure why my details don't show at bottom of my post.
Are you LVI positive as well?
I have been researching and it seems it's bad news in regards to recurrence local or distant. I assume Taxol and Herceptin is strong enough to eliminate it from my system.

Any other info on LVI would be great from some of the ladies on this thread. I have followed this thread and my details are similar to most everyone with variances in hr status and grade. I chose taxol and herceptin over the harsher concoction my MO wanted to give me. She was ok with my option but added it may be less effective than her recommendation. I was good with my choice until I saw LVI.

MaggieCat · March 2015

Carm - My report says lvi "not observed". I got three opinions from three MOs, three different treating hospitals. I ended up in a clinical trial and am receiving kadcyla. I could have received taxol/herceptin if I had been assigned to the other group in the trial. I did question the MO I see for the trial on her opinion ... if not the trial then what... and she was more "old school", a taxane, herceptin, plus one or possibly two other agents. Did the best research I could do, made a choice and haven't looked back! Maggie

Taxol and Herceptin only for stage 1 HER 2 positive?

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