Just Starting Our Fight, Help.
 

I just joined today. I found this site while doing research the day after we were told the small little BC that may not even need chemo was actually HER2 +. Needless to say the treatment plan changed. After the double mastectomy, my wife will have TCH every three weeks for 6 cycles and Herceptin for a year. This will put off reconstruction and full hysterectomy. Our world has been turned upside down and this is just the beginning. I could really use some support from folks that have been down this same road. Our friends have been great but they don't really understand what it is we are facing. Her story is a little different.

Who has had this same treatment? Good and bad things to come? What do you say when your wife is crying because she is scared to death?

Also, this all started off to be elective due to gene testing. However, BC showed up between the time she decided to be proactive and her surgery. See our full story:
by clicking this link: http://www.booster.com/teamstacy

Re: Just Starting Our Fight, Help.
 

Hi Freaking Out, I can empathize big time, see my signature, I started out with an "infected nipple", then the game changed, and then only had a small HER2 negative tumor before my "prophylactic mastectomy", was figuring I could avoid chemo, and then the game changed big time.

I'm so sorry you've had to join this club, but you've found a great resource of info and extremely supportive people.

I too had a double mastectomy, 6 rounds of TCH, am still on Herceptin until November. It is not easy and please feel free to have your wife PM me anytime when she is ready. I cried for weeks before I was able to talk about it to anyone.

If you could post the details of your wife's diagnosis, that will help everyone here respond. Its the "Quick links" button at the top of the page.

No, your friends don't understand, because until it happens to you, you just don't get it. I know how devastating it is, and so does everyone else here on this forum.

Whatever questions you can think of now, you can use the search box to find tons of posts and information. You'll learn more here oftentimes re: side effects, surgery tips, etc, than you will from the medical team. I know I have.

All you can do is take one day at a time. I know that's a trite cliché, but its true. I'm still doing just that!

Carol Ann

Re: Just Starting Our Fight, Help.
 

Hi new member, you have come to the right place for assistance.

Welcome to Her2+support.org

We all in many ways donate time and resources to many organizations that deal directly with research to find a cure for women affected with breast cancer type Her2+. Frankly, I find it tacky to open the page and the first thing to see is the purchase of a shirt.

BTW

I believe, based in my many years of dealing with this medical issue- please read my signature, that your wife is in good hands with her doctor being proactive by placing her in herceptin for one year after she finishes the required chemo treatments. And congratulations on the early BC detection, that't the new way to treat many types of cancer, with new genetic tests coming on the market, why not use them, they are available to all of us. Many of us on this site wish we had had that option before our diagnosis.

Again, welcome to our organization, we are compassionate ladies who have had in the past and continue to struggle with this disease. Please don't hesitate to ask anything regarding Stacy's health, treatments, diets, frustrations, etc. You will find tons of information from our dedicated sisters, most importantly we understand each other.

Take care and stay positive.

Adriana

Re: Just Starting Our Fight, Help.
 

Hello FO:

I like the idea of the t-shirt campaign.

I received a similar treatment back in 2008. I had several lesions in the right breast with Pagets of the nipple, positive nodes. Most of the literature back then said the prognosis was not good. But things have changed for the better with Her2 positive breast cancer treatments. Your wife is very lucky to qualify for Herceptin with a small little BC.

Your wife has had quite a shock. And breast cancer, and the unknown associated with the diagnosis is very scary. Once the surgeries are finished, and the chemo is started the stress and fear should start to decrease. I found chemo to be quite unpleasant. If I knew then what I know now - I'd have a better plan of how to deal with the side effects, and the numbers to call for help at the ready. No need to suffer with diarrhea, etc. when something as simple as a potassium supplement can clear it up.

There are many others that have gone through treatment more recently and they have good advice.

Welcome and let us know if we can help.

Re: Just Starting Our Fight, Help.
 

Thank all of you for the kind words. It truly helps knowing that folks are here to support each other.

Carol Ann, I will tell Stacy to contact you when ready, thank you for that offer.

Adriana , please know that I was not trying to be "tacky" nor sell you a t-shirt. A good friend started that page for us. I simply wanted to share the "full story" with whomever decided to look at it. I have told that story more times in the last two months that I care to remember so I find it easier to copy the link. However, opinion noted. Thanks.

Lizbeth, everything I read talks about the poor prognosis with HER2+ BC. It is so good to hear of the improvements. The campaign was started by a really good friend. I had not heard of it but it's a really cool way for friends, family and others to show support. It has given me many ideas to use in the future as far as raising money to donate to various organizations as we learn more about this.

I've been stressed thinking that we will be dealing with this for the next 12-18 months, but by looking at all the pages, you ladies have been dealing with the stuff for years. I guess it remains in your life forever in some form.

Like I said, this is very new and scary for both me and my wife. She gets a port put in next Wednesday and her first TCH treatment is the next day. What side effects seem to be the most common? Suggestions for a "treatment" or "Chemo" bag we should pack?

Thanks again for everything.

Re: Just Starting Our Fight, Help.
 

Hi FO, one of the most important things is HYDRATE, hydrate, hydrate ... my onc nurse told me 3 liters of fluids a day during chemo week, and while I couldn't manage all that all the time, I did during that first week every time. It really helps minimize side effects.

The bad news is that everyone is different with what side effects they experience. If you google for the laundry list, you will scare yourself to death. The good news is that you most likely won't have all of them. Did I mention to drink lots of water?! :) (Juices, soups, broth ... all count towards the fluid total) I drank FLAT (chemo destroys your stomach lining)ginger ale in copious amounts during chemo.

Ask the oncology nurses/doc for what medications they suggest to have on hand for diarrhea//constipation. I had OTC lomotil and Miralax on hand at all times.

Take a blanket because chemo infusion rooms are usually cold. I always slept through most of my infusion times because I got Benadryl as a premed ... plus other meds to help with the side effects.

The steroids I got also kept me up at night a lot the first week. I watched a lot of Turner Classic movies in the middle of the night!

Will Stacy be having a chemo orientation meeting at her oncologist's office? If one hasn't been scheduled, ask for any handouts, etc they have on side effects and the medications they will be giving her along with the chemo to handle them.

I'm sure there's stuff I've forgotten ... search chemo here on the site and you'll find loads more info!

CA

Re: Just Starting Our Fight, Help.
 

Thanks Carol Ann,

I did make the mistake of using google to research this stuff and you are 100% correct. We had a chemo class last week. They did tell us a lot of info and gave a binder about what to expect. She just picked up meds that were called in. She will have steroids, Claritin, a cream to rub on the port before treatment, etc. She is worried about weight gain with the steroids. She has been a trooper but has recently been more upset. I am here for her 100%. After her surgery, I washed her, dressed her, and thanks to having two young girls at home I was able to fix her hair. I shaved her legs, you name it. I just don't know what to say to her or how to say it when she's upset. It has caused a few issues with us at times. I guess we will know more after our first treatment. Thanks for the info.

Re: Just Starting Our Fight, Help.
 

Let her know it is ok with you if she vents anger, fear, sadness ... whatever she is feeling. There is a lot of pressure in breast cancer culture to always "think positive" and "think happy thoughts", and it is hard to keep that up all the time when you are the one going through it. And just let her vent.

Because yes, this all sucks. I was worried about the steroid weight gain, too. Plus losing my hair, what side effects would I have, you name it. And then all your friends, who do mean well, are telling you to "Think happy thoughts." Yeah, right. Maybe later, but not the week before chemo!

Plus I too felt like I needed to stay positive for myself, and those around me. Then I would feel bad when all the sadness, anger, etc got to be too much.

It just isn't possible to be cheerful all the time. Hence, vent and cry moments! I still have them.

There is a vent thread here too on the forum. :) Check it out!

And may I also say, Stacy is lucky to have you!

CA

Re: Just Starting Our Fight, Help.
 

The best thing my husband does when I am having a 'pity party' is just listen. I don't need him to try and fix it because he can't. Hold her and listen, wipe her tears, get her a glass of water. She just need you to be there.

Dee

Re: Just Starting Our Fight, Help.
 

Freaked Out, (I'd like to address you by your name),
Welcome to our warm and wonderful site.
You can't imagine how much information and support you will receive here. I hope you are inspired by my signature, that's what I will say first. Second, there are many phases of good and bad, happy and sad, and I'm not going to lie to you, a diagnosis of cancer is a game changer, a TOTAL life changer. And you never go back. (That is unless CD47 out of Stanford U IS the Holy Grail, or other immunotherapies jump to the forefront and shut down HER2).
You will always have to remember that every case is individual, so you can't compare your situation with anyone else's...that you must stay strong, encourage your wife to eat to deter cancer, exercise and keep up her life as normally as she can.
Good luck,
Karen
In MY case, sugar equals cancer. And it is an inflammatory. I had to remove it from my diet. If I dip and ingest it, I suffer.

Re: Just Starting Our Fight, Help.
 

FO,

I confess - I didn't take all the steroids - and never missed them. I am allergic to benadryl, but claritin does the trick.

I lost weight during treatment as the diarrhea was my worst symptom. The other 2 side effects that I hated were the hair loss and the peripheral neuropathy. I iced my hands but still do not have the same sensitivity as before chemo. My hair is thin when it used to be thick, big sigh. Chemo is not for sissies!

The Her2 numbers are much more favorable then you would think. I believe the 5 year survival rate is 95-98% at your wife's stage of diagnosis. It is not the Her2 that is the biggest threat, but the BRCA2. I say not to worry unnecessarily, but to be very vigilant and cautious. I think due to your wife concern about her family history she was making prudent decisions. I too was caught a little off-guard being diagnosed in my early 40s. Who expects to have breast cancer at such a young age?

Like many of us - the lucky majority - your wife's cancer might be just a bump in the road of life.

Re: Just Starting Our Fight, Help.
 

Dear All of the Ladies that responded to FreakedOut - I just finished reading the previous responses to FreakedOut. I am soooo...proud to be a part of this brave and strong group of women. We have all been at the door that FreakedOut and his wife are just now going through - I am humbled to be able to serve and support others during their time of dealing with this bump in the road of life.

Dear FreakedOut and Your Wife - What a great husband you are to learn everything you can about this cancer to help your wife during this difficult time. Just some basics - we all know Her2 Neu is not the type of cancer anybody wants - but thanks to a breakthrough in drugs such as herceptin and perjetta - targeted therapy drugs - the survival rate increases tremendously. Next, everybody reacts differently to the chemo drugs - for some they are out of commission for 3 or 4 days after the treatment, then they are back to their regular routine, others they are down for the count for most of the time between treatments. Using the steroids, anti-nausea drugs, drinking water, even the port make the chemo treatments easier. Next, losing your hair - not exactly the most fun thing to go through in life, but as I found it is not the worst. I like to think of it as a badge of courage. And with today - May 22 - exactly one year ago, I finished my last chemo treatment - Your hair will grow back. Get a wig, wear the caps, hats - actually for me there was a lot of freedom in not doing my hair everyday.
My best advice to you - After my 2nd chemo - I received additional fluids because I was so dehydrated - having the extra fluids became the key for me to get through the later chemo treatments. Usually I would get the extra fluids - about 4 days after the treatment.
Last - it will be okay. For about the next 9 months, you will be on one heck of a crazy train ride - sometimes the ride will be smooth, the tunnels may be dark and way too long, but at the end of the ride - you will still be you and you will learn all about how precious life is.
Come back to this board often, we are all hear to help. Our stories are all different and unique - if you have a question, there will be somebody which can give you an answer through a first hand experience or point you in the direction to find the answer.
Pam

Re: Just Starting Our Fight, Help.
 

The hair doesn't always grow back. I'd like to have my pre-chemo hair. If I had to do it all over, I'd wear a cold cap, switch taxanes from docetaxel to taxol, and stop at 4 chemo treatments. Some ladies permanently lose their hair with chemo - all of it.

We all have different things that bother us - that was mine. Plus the loss of cognitive function, memory, etc.

Hence - the enthusiasm over any advance in the treatment of cancer that moves us all away from chemo to more personalized care.

Re: Just Starting Our Fight, Help.
 

Hi Freaked Out,

Good choice of user name but hopefully in time it won't feel so accurate.

My mum has just had her 5th of 6 TCH chemo sessions. The first was probably the hardest because it was so full of surprises - we expected nausea to be the worst side effect, but instead she got really bad heartburn and put on 3 and a half kilos overnight swelling up from water retention. These symptoms still come up in each cycle, but she is getting better at knowing how to cope with the side effects - what meds work for her, what foods and liquids help or make her feel worse etc.

You can help a lot (sounds like you already are!!!) by helping her figure out & buy whatever might make her feel a bit less horrid on the bad days.

If she is up for it, walking every day helps - even if it is sometimes a short slow walk with a few sits along the way.

As for the emotional side of things, listening is probably best. Different people cope with the fear and stress of cancer in different ways - it may be helpful for you both to be able to open up and talk/cry about your fears, or maybe she needs you to provide comfort and reassurance. Or just listen and hold her.

The OLD stats on HER2+ are horrible, but since Herceptin and the other newer treatments HER2+ isn't such a bad cancer to have if you have to have one. And there is an amazing amount of research being done to make even more effective treatments.

I think it's natural to be scared to death at the beginning, but it does seem to get easier over time.

By the way, people are more likely to visit these sites while cancer is prominent in their minds - during treatment, or later if there's a recurrence. A reasonably high percentage of people won't have a recurrence, and after their treatment may be more absorbed in other parts of life again and visit less and less often (as much as we love to see their positive stories). So you'll see less of these on the boards even though they're out there. Hopefully your wife won't have any more episodes of cancer, but it's also reassuring to see the details from women who are still going strong after various recurrences.

Wishing the two of you all the best on this crazy roller coaster -M

Re: Just Starting Our Fight, Help.
 

PS - to pack for the chemo lounge: We usually take a comfy cardigan in case it's cold, some of Mum's fave teabags and a healthy lunch (her hospital provides sandwiches but we both ended up with a stomach ache from the stodgy food so bring our own salad or quiche now), and a good book.

Try to stock u beforehand on meds for common side-effects (constipation & diarrhea, the biotene mouthwash, etc etc) so its on hand straight away if she needs it.

Re: Just Starting Our Fight, Help.
 

Lizabeth, my hair has always been fine but lots of it. Now, I do notice it thin in places. My hair stylist told me to get nioxen (sp) but there all different ones, so I haven't. My acupuncturist told me the shampoo would not work but the acupuncture would help that too.

FO,
For your wife listen, let her cry and maybe if she is lying her head on your shoulder sing a simple song to her, and know you can't fix the way she is feeling and let her go through it. Listen to her and pay attention to what she tells you. Don't let her feel guilt, worry, or shame because you are the caretaker and it's hard on you too (go to other caretakers for that-not her). Start taking a multi-vitamin with iron, vitamin D, and glucosime. I never gained any weight with steroids so I took them. Have one liner jokes ready to make her laugh because it will be hard to find anything to laugh about. These are just a few things......shall I go on..;).

Re: Just Starting Our Fight, Help.
 

To all of you, I simply do not know what to say. I am completely overwhelmed by the responses I am receiving. I did see that there was a lot of good information on here to be found, but I did not expect the reaching out/support. This is truly awesome. I have not shared this with Stacy yet, it's kind of been my support and "go to" place. But after seeing how the folks seem to really care and share info, I am going to at least offer her a chance to look into it. Not sure if she is ready to do that or not.

We have two you daughters at home so she has worried about everything from getting healthy so that she is around to see them grow up to not looking like "mom" in the near future. I must say that as vain as it sounds she is having a hard time with the loss of hair. Stacy has the most gorgeous, natural curly hair and a lot of it. She gets told how much everyone would love to have hair like hers a few times a week. We discussed the cold caps but the Doc said that it will not work for her and that she will lose it for sure. As sad as that makes her, she recently watched a video of a woman talking about losing her eyelashes etc and that seemed to upset her even more. Stacy is very strong and has spent her life helping others so it's a little hard for her being the on the other side. She turns 40 this weekend and gets her first chemo treatment 4 days after her birthday. NOT FUN. But we will remain and positive as we can and keep our chin up. She is thinking about cutting her hair really short (not shaving it) so that she has some control over the situation.

I forgot to say, we did recently get a good report! The CT and bone scan reports came back clear. Waiting on these results was very stressful since we have not had many positive things happen during all of this.

I really can't thank yall enough for everything. I have found myself smiling several times while reading and replying to the above messages. You ladies ROCK!

Re: Just Starting Our Fight, Help.
 

Hi Freaked Out,

I am one of the fortunate ones - eight years out now and doing amazingly well. As mjm stated, when done with treatment many are doing well and simply move on with life and don't post much. I'm guilty of not posting regularly, but visit this site often. Having said that, I would like to offer you some hope.

I was at the Revlon Walk/Run in Los Angeles a few weeks ago. This event began in 1994 to fund the research for Herceptin. Dr. Dennis Slamon (the researcher) appears at this event every year and gives a short speech. This year he said that HER2 breast cancer used to have the worst outcome, but with the advent of Herceptin and other targeted therapies, it is now considered to have the best outcome! Breast cancer patients are now disappointed when they are not HER2 positive.

If you want to learn more about Herceptin there is a great book that gives the history of the drug and the story behind Dr. Slamon and his research: Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell. It is a really great story and well worth the read. I also found this YouTube video of Dr. Slamon giving a talk in layman language. https://www.youtube.com/watch?v=fJgngLQgllM

As far as hair loss goes, I lost all of mine but it all came back and looks as good as it did before. Again, one of the lucky ones, but it is certainly not uncommon to grow back a full head of hair. A great book with a humorous spin regarding hair loss (and everything cancer): It's Not About the Hair: And Other Certainties of Life & Cancer by Debra Jarvis. Trust me, it's not easy being a bald woman, but for most women it is a temporary condition and can be hidden with wigs, caps, scarves, etc. The lack of eyelashes was harder to hide, but I still wore make-up and eyeliner seemed to make it less noticeable.

It is obvious that your wife has a huge support system with you as her biggest supporter. Like others have said, you can't fix this or change what has happened. What you can do is love her, support her, and just listen when all she wants to do is verbalize what is going on inside.

My best wishes to Stacy as she goes through treatment. With you by her side she will do great!

Re: Just Starting Our Fight, Help.
 

So many wonderful responses here Freaked Out. You have found a community of love and support that will get you and Stacey thru some very rocky months.

I could repeat what everyone else said, as they all said great things, but I won't I will just add a few of my own thoughts.

You mention young children. My daughter was 7 when I was diagnosed. We chose to be honest with her while shielding her from details. We also relied on her teachers/principal and guidance counselor to help support her. My chemo started in the summer so we found her a therapist to talk to. There is a great book called "why (or when??) mommy wore a hat". Look it up and if you want it and can't find it, PM me, I will look for it and send it to you.

Also, I had great, long naturally curly hair too. I shaved it off before it fell out because emotionally I knew I wouldn't handle that well. I got two wigs that I never wore and tied long pretty scarfs around my head. My hair is now just a bit less curly then before, but it is thicker. I have kept it kind of short because I never realized I had such a nice neck.

Wishing you all the best
Leah

Re: Just Starting Our Fight, Help.
 

I'm really sorry your family is facing this but she, like many of the wonderful women here, will get through it. You can read my story at my blog, http://www.butdoctorihatepink.com but basically, I was diagnosed Stage II in 2009. I did the same treatment your wife did and got through it just fine - even worked. My son was 12 at the time. Even though mets were found in my liver after treatment, I am still here. He graduates high school in 2 weeks and I'm thrilled to be here for that! He is going to college at Caltech and you know I"m so happy to see where he ends up.

Of course, your wife is going to be really upset to lose her hair. We all are. But it will grow back in no time. Sometimes it helps to cut it short first, so when it comes out you aren't losing all those long strands. It's pretty messy too. She can see what she looks like in a short 'do as she'll have one for a while as her hair grows in.

Chemo is not anywhere near as scary as the movies make it out to be. I have been on 7 different chemos and none made me throw up. Only one even made me nauseous and that was my 7th, Gemzar, and that's probably because I'd been on it for so many years. I would recommend she try not to be too scared as it's nothing like what is described. Her biggest problem will likely be constipation, and easy enough one to solve.

Good luck to your family.

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

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-A SoCal Gal