TRIPLE POSITIVE GROUP

Yay Helen, finally on your way. Sounds like a good plan. Let us know when you start. Ask any questions if you need to.

Helen, I'm so glad you have a treatment plan in place. Stay hydrated: I received that advice prior to my first chemo, and it makes all the difference in the world. I'm talking, like, super-hydrated--at least 128 oz (or close to 4 liters) per day.

Here's the thing with side effects: be prepared for them, but don't expect them.

I haven't seen anyone in the states doing FEC, but it's very common in NZ and Australia. One of my pals from the August 15 chemo group got it; she lives in Australia.

You've got this.

Helen I assumed I would get every SE (side effect.) I didn't even come close. Everyone is different but almost no one gets every SE. The hair falling out is a yes though unless you wear cold caps. And I hear that doesn't work will all the chemos.

helen, your already more prepared thanmost, just hydrate, hydrate,hydrate. Thats half the battle and join a start group, you will have lots to share with them. Blessings

thanks everyone I have joined the July chemo group and that has been really helpful and fun as much as you can have. Will still keep in touch here too.

My chemo class today was a really helpful one on one and I have received heaps of advice from the experts that seems to be the same so must be good. Roll on 930am tomorrow.

Catch you later

Helen

Hi lago not quite uneventful more like non existent - only yesterday I said two steps forward and one step back well it blimmen happened again today.

After no sleep at all last night because of the steroid meds we are at the hospital in plenty of time. No hurry here obviously... Blood pressure 121/76 all cool here.

Line in - port all checked and ready to go until nurse says I will just go and get your chemo drugs from pharmacy only to find they are in our Dunedin hospital (as we a regional hospital) and they wont be here until tomorrow. Talk about frustrating - had a good cry as I do and said this is bullshit.

Asked for sedation as now I'm on these steroids for a few more days and I get grumpy if I don't sleep. No blood pressure taken on way out would have blown the machine I expect. Human error as well as they are rushing me through as somewhere along the line I have been missed so a catch up happening.

So here I am needle in place in my port, still to save time tomorrow. Went for a walk which was to clear the head but did struggle being fatigued.

Back we go tomorrow. Poor partner has to take an extra day off work.

Sorry for my rant - have a great day

Helen

Hi all-have been following but was just wiped out coping for a while. But doing better. This is a welcome to Helen , a foot update, and lots of hair thoughts for Bird!

Helen: Well, I am sorry that the drugs weren't there, but maybe there is a good side to it, which is to learn early on that you can plan and plan, and expect and expect, but nevertheless, unexpected &*%$ will happen as we travel this cancer road that none of us wanted to be on , ever. The anxiety of the first session is overwhelming, and I am sorry you had to endure it even longer. I hope by the time you read this, you will be well into or finished with your first session! I second the hydrating advice. I hope they have also given you meds to help you sleep; if not, ask for something. Ativan (Lorazapem) will help you sleep and help anxiety, too. There are probably other things, and there are always cannabis products (not sure if they are legal in NZ, but they are in California for medical use and my MO will prescribe them in certain situations.)

Bird of Light: Good luck with your start. Waiting to start was almost the hardest part (but not quite--the foot complication was!)

But, the latest re: my hand-foot syndrome is GOOD NEWS! As of the last two days, my feet are drastically improved! I waited to be sure, but tested it today and it is for real! The 10% dose reduction finally gave my body time to sort things, and I can actually NOT USE THE WHEELCHAIR when I go to the doctor's or a store! Today was the first day--I have waited 2 days and kept resting because I wanted to be sure. But yes, I drove myself AND walked into the clinic today for my blood draw and dressed for the occasion: makeup, my best sunglasses, a skirt, and my fanciest wig! When I got home, I even went in my garden and cut roses , unloaded the dishwasher and cooked something small, threw in laundry (exciting to do when you haven't been able to ), etc. I was up and about and thrilled. The feet are painful tonight, and much more red, but not swollen and not needing ice and pain meds and pillows and I can still walk on them without fainting.....so I am thrilled. Will take it easy tomorrow and one day at a time, but I am feeling grateful for a bit of ordinary life back!

About the hair loss: I am not sure if I would have lost it all. I really don't know. I had gone "bald" on both temples, and at the crown, in classic male pattern baldness, but I could cover it with other hair. But then chunks underneath at the nape of my neck started just coming out with washing, and same with random places. And my head really hurt , which it had in all the areas that went bald. I do wonder if maybe I had been on the "right" dose of Taxol for my body (obviously, I was a delicate flower in this chemo picture) maybe I would have just thinned a lot, but not enough to make it necessary to shave. I don't know. My stylist--who I have had for over 26 years, thought it looked moth eaten, especially from above and behind, and that it would grow back unevenly and badly, and that I would be better off shaving it. I didn't do it right then...I just cut it short. And I think that was a good move. I did cut it when my 22 year old daughter visited and told me it looked horrible, unless I was trying out for a role in a cancer movie or trying to imitate a moth-eaten sweater....(amusing.) I would recommend a cute shorter cut that you've had before and liked, if your hair is long. It was disturbing having longer hair fall out, and much less so when it was shorter.

I have two favorite fake hair things: a Henry Margu baseball cap with hair attached (I put it in a ponytail; you could hike or walk in this and it wouldn't be hot like a wig would), and something I call "headband hair", same manufacturer. I have the "Classic" length black headband and it's a medium bob. It's a little puffy for my taste, but I've played with it and learned to brush it into a more natural shape. Super comfy. My wig is pretty and fine for a few hours And scarves work well--I prefer the pre-tied ones . Hope that helps you sort things. I guess I would say to wait and see how much you are thinning. I was okay until about week 6--so you can get some more time with your natural hair. I am glad I did that.

Helen that does suck (yeah I'll say it). Sorry you are having such issues with the steroids. I think everyone does (well except me. I loved them. Loved the energy and as soon as I stopped I retained 5lbs of fluid). But I'm a bit unusual. So I hope by the time you read this you will be done with your 1st chemo and stopping the roids!

Hello everyone! I'm new to this group. I haven't felt mentally ready to start blogging until now...I just finished my six rounds of chemo and am preparing for a bilateral mastectomy in less than two weeks. They are hoping to do direct to implant reconstructive surgery at the time but we'll see if that actually can happen...if not, it will be the tissue expanders (which I am really hoping doesn't happen). I am getting very nervous about the upcoming surgery and healing time and what I will experience. I am also meeting with a gyn-onc tomorrow to discuss prophylactic total hysterectomy (I also screened positive for a genetic mutation--PALB2). Lots to think about!

kate - it is important to keep in mind that ranges on labs were formulated for adult men, not women - often we fall into the low, or slightly lower than low, end of the range occasionally. I would not worry about results on a single CBC, but rather worry about a trend. If you have a low result in a category on the CBC ask if you can have another done in a month and see what it shows. If your WBC was in the normal range, having a low result on a white blood cell component is not that big a deal. And, yes, Herceptin can depress your counts. I just had a CBC one week ago and had two low results - MPV (mean platelet volume) and lymphocytes (lymph#) were both low for me - I finished chemo 5 years ago.

I am still dancing on the border of anemia. Never enough to do anything about it other than have a talk about eating spinach. Hopefully our counts will ease their way up after Herceptin is finished

thanks Jerseygirl. I had my port out June 10th and it's nice to be able to sleep on that side. I got my insurance all sorted out. Will be calling Monday to schedule my ultrasound. Lump is still there

Hair usually falls out at 14-16 days, mine hung on until day 24 - but that is pretty unusual

Hi everyone - so far surviving day two after chemo. Not much to report as the side affects have been minimal to speak of, Bit thick in the head but probably no more that usual lol. Drinking heaps and have been for a walk.

I'm trying to follow the regime that the hospital gave me pretty much to the letter and so far its working. No nausua to speak of and I'm not aching too much. By the end of the day yesterday I was tired and a bit achy with puffy hands.

Today I have noticed a bit of a sore mouth.

I did wonder about the hair loss when to expect it. I have cut it back already but thought I would just bite the bullet at the end of the week and shave it off, which is only a week after 1st treatment but I just cant be waiting around and checking all the time.....it is a hard one.

My port was put in when I had my op and has now healed and thank goodness I can sleep better.

Bird of light - Listening to your trials with insurance companies sounds quite scary. In NZ we mainly go through the public health system and I guess get what we are given treatment wise. So I am always curious whether we are keeping up with what on offer - I hope we are.

Take care

Helen

Hi ladies,

So.... I've found another lump in my breast and I'm terrified. I have not been taking the Tamoxifen like I'm supposed to, for the last 6 months and now I'm wishing I had.

I know I shouldn't worry until I see my doctor but I'm freaked out. It feels the same as the first and it's right beside my scar.

Anyone else here had a recurrence within 2 years of surgery???

Thoughts???