TRIPLE POSITIVE GROUP

Yes, (l)-glutamine is just an amino acid, the most abundant one in the human body. Protective of nerves and g.I. tract. I used "Naked" brand from Amazon (high quality without the ammonia scent i researched cheaper brands could have). 5 mg 3x is the normal dosing, and 10g 3x recommended for chemo, but only needed for a week each chemo cycle, starting the day before chemo.

Hello mam! How are you doing today?If you dont mind me asking. I just want to know about your treatment for breast CA? Any inputs from you is greatly appreciated.

rljes - took me forever to get my MO and NP to prescribe this for me. Sometimes they just really don't listen.

Stay safe everyone! ❤

Steroids kept me up at night until they wore off. (MO prescribed me Ativan to help me sleep on those nights.) They also give you some energy, which was helpful because I worked through chemo. I guess they also did their job; I never had a bad reaction to chemo.

Hapa - thanks. I have not started chemo yet (next week sometime) but I just got the doctor's orders and there is a steroid in there. Someone else had recommended trying to avoid them so I was curious. I have my nurse phone call this morning so I'm going to ask about it. Looks like you have the same DX as me - can you share why you did radiation and how that was? And how you are doing now? Thank you!

wahoomama - often the steroids are prescribed before, during, and after. They are given mainly to prevent allergic reaction. My MO only initially gave steroids during and after, until I had an allergic reaction about half way through and then he added them in before as well. I am one who actually liked them - I am not a great sleeper, don't require much sleep, so staying awake doesn't bother me. I liked the energy boost because it allowed me to pay bills, grocery shop, cook ahead, clean, catch up on laundry, get clean sheets on the bed, and get ready for the few days after each round that I would not feel up to par. That way I felt no pressure to do anything if I didn't feel like it. I also had several surgeries before starting chemo, so I was a bit behind the 8-ball energy-wise, so any help was appreciated. I was naughty and divided my last day dose in two and took the half-dose over two days to avoid the "falling off the cliff" feeling when you abruptly stop the steroids. I eased off. Did I tell my MO I did this? Nope. Some MO have a similar viewpoint on Neulasta or Neupogen to boost white cells during chemo. They may wait to see if your WBC tanks and then give the booster rather than giving it prophylactically. The boosters come with their own set of side effects for some, so waiting to see if you need them can be beneficial.

On the subject of things to do to prepare - I got a nice wig similar to my own hairstyle and took it to my hairdresser for some customization, a couple of scarves from the link below, cut my long hair and had a hairpiece made to wear under ball caps and fedoras from a company linked below. The hairpiece was made after I mailed the hair to the shop, and they mailed the hairpiece back to me made form my own hair. It was the single best thing I purchased. I used regular bandanas in the house, but when I left the house I wore either the hairpiece or my wig - I was just someone who didn't feel comfortable going out in a scarf or bald - but, to each their own - you do whatever you feel comfortable with. My husband got me a lamp extension so I didn't have to reach as far to turn the bedside lamp on/off, linked below. I removed the acrylic from my nails so I could better care for them and try to avoid lifting. I iced hands and feet with bags of frozen peas brought in a cooler from home to help with neuropathy, but more for nail lifting. I took a 100mg B6 capsule daily and also used 30g of L-Glutamine (3 doses of 10g each, dissolved in a cold, non-acidic drink), and also Acetyl L-Carnitine to prevent neuropathy. Always check with your MO about supplements, some will not approve any, some will approve some. I painted my very short nails with a coat of clear hardener, and then a dark opaque color the night before chemo. With taxanes the light penetration is thought to possibly exacerbate lifting. I removed that polish the next day after infusion and painted on a coat of hardener each day for seven days. I then removed all, and started over with that weekly process until it was time for the next infusion. With the icing I did not have discolored or ridged nails, or lifting, except for one nail, which I had injured. I did use Aquaphor - everywhere. I slept with it on hands and feet with cotton gloves and socks to try to keep my skin moisturized, with extra at the corners of my nails. I put it on my face, especially around the corners of my eyes and my nose. Taxotere can cause involuntary tears, which are salty and caused irritation for me. Soft moisturizing wipes were also my friend, all those parts get dry... I did take Claritin (loratadine 10mg) before Neulasta to prevent bone pain. The injection occurs 24 hours after infusion, either in the form of an injection at the center, or the On-Body type (I suspect this will be used, if possible, to avoid coming in to receive an injection) to keep WBC at a level to avoid opportunistic infection - especially important now. It is important to take the Claritin BEFORE the injection, if you take it afterward it is less effective. I took it for several days after Neulasta, and it is important because taxanes also cause bone pain for some, so anything you can do to prevent it is good. I never had issues a couple of Tylenol and a warm bath couldn't eradicate. I used printed side effect charts from the American Cancer Society, linked below, to chart what was going on after each infusion. It kept me from having to remember, and I found that each infusion was slightly different. I brought them with me and could discuss and pinpoint any issues with my MO so we were all on the same page. I know there are some cell phone apps that people can also use. If you want help some use Meal Train to organize meals brought for your family, linked below. I did not find that I needed any help with this, I was well enough to stock my house with groceries and cook, and could cook ahead and freeze meals for my family by myself. Some people will ask what they can do for you - I received a lot of button front pajamas, some books, flowers, etc., but I know some people appreciated receiving help with transportation and gift cards for take-out. If you don't already have it a gift of Netflix would be helpful if someone asks what you would like. I had a hard time reading a book, but found that magazines were doable - short articles were easier than an ongoing story. Weirdly, I binged The Sopranos - not exactly uplifting, but it was engrossing enough to hold my attention. I also played solitaire online until I won, then played several games of MahJongg until I won - I felt this helped with focus. I did this even on my worst days as a matter of principle. I watched baby animal videos too, and also checked DamnYouAutoCorrect - it always made me laugh, although some may find it inappropriate. Some also like to join Caring Bridge to keep friends/family up to date on how things are going. I didn't do this and my husband usually kept people updated. I preferred to text with friends - that way I could do so when it suited rather than talking on the phone. It was ok if I called friends, but I didn't get calls from them as much, as they were afraid of waking or disturbing me. This worked out well, and don't be afraid to state your preferences. I think it can be difficult to say the same thing over and over reassuring people you are ok. I also Skyped with my in-laws who didn't live near, and my son who was away at college in another state, which was nice since they could see me and see that I was ok. Facetime would do the same thing if you have it. I found that each round of chemo was different. First one I felt terrible, likely due to the proximity from the last surgery and also because of the loading doses. I had a wicked headache, compounded by sensitivity to Zofran, I get a headache from it - which is common - and it does not work for me. I was given three at home meds for nausea, to use in succession. If the first one didn't work, immediately move to the second, etc. My second line med was Compazine and it worked beautifully. The third line was Ativan, but I never needed it. I started with these meds the night of chemo infusion, it is easier to prevent nausea rather than treat it once it happens - like with pain, you never want to chase nausea - it is much harder to treat if you wait for it to happen. I took these meds for about the same amount of time as the steroids - roughly 48 hours, then was able to stop until the next round. My second and third rounds were pretty mild, no real problems other than some GI distress, and the solution was to stay home - never resorted to meds as it was not a severe problem. This lasted for about the first week to ten days, then the second ten days before the next round were pretty normal - I went out to lunch, ran errands, etc. In the current situation I am guessing that won't be happening for anyone, which is really unfortunate because it helps to feel normal. Rounds four and five were harder, I was more fatigued, and was experiencing neuropathy by then. I expected round six to be bad, but it wasn't at all, I did not have any GI issues - maybe I had adapted, who knows?

Scarves - https://4women.com/shop/

Hairpiece - https://chemodiva.com/

Lamp extension - https://www.homedepot.com/p/HDX-15-ft-16-2-Indoor-Switch-Extension-Cord-White-KAB-1P-KAB-18/300726073

Chemotherapy Side Effects Worksheet - https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/phm-tracking-tools.pdf

Meal Train - https://www.mealtrain.com/

Caring Bridge - https://www.caringbridge.org/

ACK!! I seem to have written a small book!!! Hope this is helpful.

hapa - LOL on the Taco Bell drive thru story! I love it

Sure, what exactly would you like to know? I had neoadjuvant chemo last year from August to November, and did many things on my own to try and help with side effects for this and other treatments. I had a single mastectomy in December, and am doing radiation treatments currently. Is there specific information you're looking for?

Hapa and LaughingGull - thanks for all that info! Port goes in on Wednesday and I start chemo on Friday.

Wahoomama - I loved the steriods. I asked for more - I got so much accomplished. But my metabolism is diff than most. 2nd round of chemo I went on a shopping spree and bought new Den furniture. Cleaned out my front ditch. Loved it. Down hill after that, but nice while it lasted.

My next-door neighbor is triple positive and made it through 4 doses of TCHP before her oncologist shut it down because of neuropathy in her hands and feet. She just had her surgery and is waiting for her pathology report. She is worried about going back on Herceptin alone because TCHP already lowered her ejection fraction. She is also BRAC2+. Has anyone heard of HER2+ patients getting a lower dose of Herceptin before?

ET - Blownaway I think also stopped and started and due to a previously diagnosed cardiac condition was put on an ace inhibitor and beta blocker. I have seen some people here take those meds during Herceptin somewhat preventively if their LVEF drops early. That might allow continued Herceptin, especially since the TC had to be dropped.I would recommend your neighbor find a cardiologist who is familiar with Herceptin induced low LVEF.

Hi Ladies,

Been gone for awhile to mentally get back to a good state. I am there.

Since my last post so much has gone on.

They found some "lumps" by my left implant that showed up as "not normal " so off I go to start all the testing again. Thankfully it is scar tissue. Right now I am currently seeing a neurosurgeon back pain. Hope it is just a previous surgery acting up.

My husband has decided he no longer is attracted to me and can't see himself staying with someone who will always have the potential for medical problems. Nice huh... so we are separated.

While separated I have met someone who is 19 years younger but we get along great. So..

Been seeing a Cancer Therapist and a regular therapist. Who knew they had cancer therapist? I didn't. Things are going great for once. I feel happy. I don't feel like the end is near. My children have been a huge support.

I am ready to stay involved. Lol

How is everyone holding up?

shela - so sorry you had to go through this with your spouse but happy that you have found someone else to share time with and that you are doing better mentally.

That mental game is hard but if you can get on top of it, the sun is shining!

I hope you all have a great weekend

Ingerp - Just had to note that you are from Charlottesville - the BEST place on earth! UVA grad here - it's my happy place.