Re: Just Starting Our Fight, Help.
 

Dear FO,
1. Gaining weight with Steroids - I took the steroids also, but didn't gain any weight - as a matter of a fact, I loss 32 lbs. So tell your wife to mark that concern off her list. Regardless, if it allows the chemo to do it's job - it will be worth it.
2. Hair Loss - I had enough hair for 3 people - big ole southern hair - Loss every bit of it, bad experience - yes, traumatic - no. I knew of a couple of people that used the cold caps when I was going through chemo and they were very successful. I know they are a lot of work to use and can be costly. I believe Amy Robach on Good Morning America used cold caps. She was the news person diagnosed back in October with breast cancer and still has her hair.

Re: Just Starting Our Fight, Help.
 

I am sorry you have to deal with this. You have come to the right place for info and wonderful support and encouragement. As you can see- i had TCH and herceptin. I only had 4 treatment because my her2 cancer HATED herceptin. I pictured it shrieking and yelping into the night. I found it doable. I never threw up- and that was my bottom line. Hugs.

Re: Just Starting Our Fight, Help.
 

Dear Freaked Out,
Oh this brings back memories. Driving and crying, shaking with terror. Please know that statistically, your dear wife will get past this stage with time, the hair will return, the disgusting metal taste in her mouth from chemo will go, the hours in the john feeling humiliated and in pain will go too. Statistically doesnt mean a hundred percent of us, though, and the loss of a good friend on here who was diagnosed same time as me, with same profile and treatment, belies every word I am saying. But I am praying your dear wife knows, and that you know, you are welcome to vent and rage and cry on here and none of us will tell you to stop. We are holding your hands.

Re: Just Starting Our Fight, Help.
 

Here's another long term survivor checking in. I'm from the Netherlands, Europe, and was diagnosed in Jan. 2004. That makes me a ten year survivor. At that time, Herceptin was not yet approved, and they didn't do chemo for small node negative tumors. So I ended up with hormonal therapy.

My sons were aged 3, 8, 12 and 16 at the time. I was terrified of not being there when they were growing up. Especially for my 8 year old, who had behavior issues and was difficult to talk to at times. At first I didn't want to tell them what was going on, but a counsellor at the hospital where I received radiation therapy convinced me to tell them. She said they might find out accidentally or from someone else, and that would make it so much more scary. So we told them, and they took it well. They are 14, 18, 22 and 27 now and are fine young men that we are immensely proud of.

As I didn't have chemo, I didn't lose my hair, but I know from being on this Forum and on the Breastcancer List, another online support group I belong to, that this is one of the toughest things for many women. In our society so much attention goes to the way women look, that when our looks disappear, it feels almost like an amputation. It has nothing to do with vanity and it is a valid feeling. Actually, whatever she feels is valid.

With no lymph node invasion and no spread to other parts of her body, her odds are excellent. Herceptin has changed Her2neu positive disease from scary to hopeful. It is a tough period to get through, but after that, a new normal sets in and she (and you) will be able to move on.

I love it that you are so involved in her treatments. My husband was too freaked out to even discuss it with me. He slept on the couch for two months before he could even look at my scar. I hope she appreciates what you are doing!

Jacqueline

Re: Just Starting Our Fight, Help.
 

Freaked out~ I have to admit, after the initial shock of the big "C" word, loosing my hair was the most traumatic thing to consider. Prior to chemo, I went with my mom and daughter (she was 12) to pick out a wig. I bought the 2 that didn't make me cry...my daughter helped me pick them out, so it wasn't a shock when I had to use them. Also went and cut/dyed my hair to get it close to the wigs. I just wear a bandanna at home and no one seems to mind. The wig is for work and going out. I have found a place that said they can use your hair to make a partial wig (to wear under hats) and I have just recently ordered another wig to wear as a ponytail under a hat. I can't vouch for their work since it hasn't arrived yet, but prior to your wife cutting her hair, you might want to check it out : http://www.hatswithhair.com/Wig-Made...wn-Hair-1.aspx Oh...also, when the hair started to fall out (exactly 2 weeks after 1st chemo), the crying started again, but I soon felt all cried out and decided I needed a good laugh - so my daughter and I went to the backyard with a pair of scissors (son had the camera) and I let her go to town...it was hysterical - she was laughing so hard cutting my hair...it really was a turning point for me to realize that everything will be OK!

When she is ready, have your wife check out this site. It has been amazing and the women here are so supportive! I have my last big chemo on Tuesday (the time really does fly by!) and every time has been different. Nothing too terrible....haven't even missed a day of work yet! :) Naps have been great, as well as having food ready in the freezer, for those days that cooking was not high on the priority list. I would also be honest with your girls - we told our kids right off the bat (they were 12 & 15) and they have been wonderful. I also made it a point to never cry in front of them - no need to put them through that. And really, all I needed was time to cry and a big supportive hug from hubby and it made me feel better...no need to try to "fix" anything -just listen!

Re: Just Starting Our Fight, Help.
 

This is an amazing resource and go to site, if you ever have any questions. Her2+ might once have had a poor prognosis, but today with targeted therapies that prognosis has changed. It is always interesting to read when a person was diagnosed, what treatments they have done and how long ago their diagnosis was. Stacey will do well, she has a loving caring supportive husband and treatments have gotten so much better. Please feel free to call if she wants to chat. 818-454-0833

Re: Just Starting Our Fight, Help.
 

I don't know if they have them where you live, but there was a free session we went to called 'look good feel better' (or something like that) that had lots of beauty tips for women going through chemo. Mum's not usually that into make-up and stuff, but it was a lot of fun, and the woman from the wigs & turbans shop tried some really beautiful things on her.
She's never been blonde, and wasn't planning on getting a wig, but ended up buying a gorgeous short blonde bob that is stunning on her. Of course she'd rather not be bald, but there is fun to be had in trying new looks, & I wouldn't be surprised if she still wears the wig occasionally after her hair is back. The session had tips on how to use eyemakeup and eyebrow pencil if you lose your lashes and brows - but not everyone does.

It can be good to start trialling the new looks before her hair goes too - start wearing the turbans/ scarves / wigs round the house a bit so you all, including your daughters get used to it before the hair actually goes which can be a more emotional time.

I'm so glad you found this place - it is such a wonderful support. Breast cancer completely shook up our lives, and its quite comforting to be around others who understand, while the rest of the world carries on like everything is normal. And the practical tips are also so useful.

Re: Just Starting Our Fight, Help.
 

One more thought on the hair issue - I don't know how much it costs, but in the waiting rrom I saw a flyer for a company that makes wigs and 'hair under hats' (I think thats like a half wig but without the top of your head covered by it hence needing a hat) that is made from your own hair. I've got no experience of these, but for women with gorgeous hair like your wife, maybe an option to consider?

Anyway, best wishes to you both.

Re: Just Starting Our Fight, Help.
 

Well yall have done it again! Every time I log on and read these post, I smile, my heart rate goes up and I feel better about what we are facing. Thank each of you so much! Stacy had her first treatment last Thursday and things went much better that I expected. I did get very upset at our insurance company for not approving the Herceptin in time for the first treatment, so she only received the two chemo drugs. We just got word that the Herceptin is now approved and we go tomorrow to just get it.

Stacy has been a trooper but things did finally catch up to her this weekend. Treatment was last Thursday and joint pain, "bathroom issues" and dizziness started over the weekend. She tried to work Monday but couldn't. She is better today and working. Also, she was able to have the tissue expanders filled a little before starting treatment which made her feel a lot better. The Dr will not fill them again until after Chemo.

Yall have given me so many ideas and good advice I can't thank you enough. After wanting to keep this to myself, I finally told Stacy about this group. I figured if it makes me feel so much better to visit with yall, I have to share the experience with Stacy. There were people around so she did say too much but later told me that she wanted to cry when I told her about finding this site and reaching out. Last thing, I just spoke to a hairstylist about cutting Stacy's hair really short before she starts to lose it. Still have to workout the details but Stacy seems excited about it. I will see if she wants to get on here sometime this week to visit with our new "teammates"!

Re: Just Starting Our Fight, Help.
 

Freaked Out,

I was concerned about losing my hair also. However, it really wasn't a big deal at all. I went to a wig shop, bought a couple and then had my niece shave my head. I did this after the second chemo because so much of it was falling out.

I'm done with chemo now and my hair is starting to grow back. However, I love my wigs! I told my husband that I might just keep my hair shaved. Stacy might feel the same way, you never know. It sure is easier having no hair for working out, hot flashes, no more "bad hair days", and it saves a lot of money and time.

Best of luck to you both

Re: Just Starting Our Fight, Help.
 

You two sound like such a great team and I love how you are so proactive with helping her out! Tell her that with chemo, side effects are weird. I just finished my 6th tx last week (TCHP) and every single time I felt different afterwards. Some times I felt amazing, and once I felt icky for about 2 weeks. Lots of fluids and rest works wonders!

She should also consider looking at wigs soon. I felt much better having them on hand (bought 2) b/c they said after the 2nd tx I would loose hair and it was 2 weeks after my 1st tx! It is also worth it to spend a bit of money on a wig that looks nice (mine have highlights and close to original haircolor). I have had people comment on my "cute haircut" (that didn't know I had chemo) or wonder how I haven't lost my hair. I also just purchased a partial wig to go under hats/baseball caps for the weekend or when I am at the field with daughter. It has been wonderful and super comfy (reg wig w/hat is not so much). Also warn her that the first week or so of wearing the wig may not be that comfy, but it gets better.

You should definitely have her check out the site as well....really wonderful to be able to post and chat about stuff that really no one else "gets" :)

Re: Just Starting Our Fight, Help.
 

Hi FO, as you can see what different ways there are to approach the chemo side effect hair loss! :)

My hair is coming back now ... I never did shave my head -- to me that smacked of being sent to a concentration camp. :) I just had it cut chin length (2 separate haircuts to get it that way, it was way down my back to start, I had to work up to it) and it didn't start to fall out until after the second chemo. I never completely lost it all either.

When it started to come in, my husband cut all the wisps back so it would be all one length.

We all do what makes us feel the most comfortable at the time. That is the most important thing. I got a wig from The American Cancer Society here in my town and wore it one day. Just too uncomfortable and itchy!

Here at home I started wearing chemo caps and then gave it up. Too uncomfortable. I told my husband and 17 year old son (who have both been incredibly supportive), "I'm bald, deal with it," and they did. :)

I wore a turban when I went out and just started going out without it this week. Just too hot now that its summertime!

Its coming in gray but its coming in! :) I may color it later, just have to wait and see.

Carol Ann

Re: Just Starting Our Fight, Help.
 

In addition to all these wonderful word of encouragement and advice, please let Stacy know, I have MUCH better hair then pre chemo...(must update my photo) And I started chemo just about a year ago! My new curls are getting lots of compliments...a small silver lining. Best wishes to you both

Re: Just Starting Our Fight, Help.
 

Freaked Out,
I have to check in and hand you a small bucket full of hope. See my signature and also my thread “10 years Stage 4…and still a-ok”. It is my hope and prayer that your Stacy will also start that same thread 10 years from now. Yes, please encourage her to join - we would love to welcome her with open arms. This spiritual, physical, and emotional tsunami she is dealing with is no fun to navigate alone.
Love and Hugs,
Kim (from CT)

Re: Just Starting Our Fight, Help.
 

Hey Freaked Out - first of all, get hold of yourself, man! There are so many layers to this crap sandwich, try not to take such big bites. While it feels like the clock of crazy is ticking, the truth is, you have plenty of time to take the time to find your ways. I remember early on, the realization that "this will never be over" and it used to take my breath away. Meaning - I will always be carefully followed, and cancer invaded not just me but my family, too.

I'm an 18 year survivor, my kids were 6 & 8 at the time, and I've been through hell and back a few times. That said, if you met me on the street (or more likely on the dance floor) you would not have a clue to my health challenges. Meaning - it is quite possible to live a normal quality of life even with the worse possible diagnosis.

For you guys, you are lucky in the sense that you found "it" before "it" found you. And in the olden days, when I was a mere 38, Herceptin was still not approved for my use. So, bad news is cancer, good news is it's HIGHLY treatable. Your wife's ONLY job is to survive the chemotherapy. Whatever it takes for her to be relatively comfy and strong enough to get thru the treatments is all that matters. Once that ends, being on Herceptin alone, is quite the cake walk. Cancer is a mind game. Your wife (and you) will need to learn to manage fear, to limit worry time to daylight hours, (no worrying after 4) and to put up affirmations and reminders to breathe, stay present and out of fear. NO ONE has to pretend to be rah-rah warrior strong or any of that crap. Fear can create quite a bit of stress, so I highly recommend finding ways to manage. And, depending on your kids' ages, making sure they have a special journal to color and write about their thoughts on Mommy and also on why Daddy is Freaked Out. (!) The best you can do as daddy bear is to be calm, reassuring and be calm :)

I am totally confident that she will be around to see the kids grow up, graduate high school, prom, drive, and go to college. We've come a long way.

Now, with regard to your issues - there is nothing that you can say or do that will fix things right now. It is terrifying to try to digest this info, and it takes awhile to get your own footing, or groove on, however you'd like to think of it.

You might want to READ:
It Takes A Worried Man. It is a lovely memoir by Brendan Halpin

You've already found the best online support community. Stay close!
-A SoCal Gal