1st treatment
 

Just thought I would update everyone. I had my first tx,(treatment), yesterday and all went well. So well that I actually fell asleep during the last 30min of it, can you believe that? I picked up my prescriptions on Tuesday and Wednesday, they had to order one, Emend which by the way, I was blown away by the cost of that drug....for 3 capslules ,antinausea meds.....it was $422.50! Thank goodness for excellent insurance, as my cost was only $50. Anyone else have that drug. My treatment was at 1pm and we arrived home at about 5pm. I was tired and not much of an appetite. I took two meds at about 7, ativan and compazine and was asleep before 8pm, missed the show So You Think You Can Dance! I'm such a sucker for mindless entertainment! At least we can record things these days. I had a Muga first thing yesterday and was at 61% and then I went to my surgeon for a post op check up and all was fine. So I had a full day. My oncologist doesn't repeat the Muga until the end of tx, I am having 4, unless I present with symptoms. Is this the norm?

Rina

Congratulations Rina!!!!
 

I TOO had Emend and yes it cost $300 for me w/ a $30 copay, BUT it works. I had 6 dose dense TEC (Taxotere, Epirubicin and Cytoxan. Good luck. Take care and God bless.

Rhonda

Do you mean you had FEC for your chemo tx or is tec different?

First Time also!
 

Had my first trt yesterday! All went very well. Do not have a port so I was a bit concerned how my vein would handle it. NO problem! Rhonda I thought I was the same trt as you but as it turned out I am on herceptin for 9wks,
then 3 wks thereafter for 1 yr. My chemo is TCH Docetaxel and Carboplatin.
They went well also. I am a bit tired had the same meds for nausea and had a co-pay of $68.00 but the next order will be covered completely since I ordered it straight from the insurance express scripts and then the co-pay is dropped which is great. So far so good. Feel very tired but I worked a full day today also will not repeat this in the next 3 weeks chemo trt. will shorten the day or take it off. The meds are working and I feel good - did not sleep to well with the steriod the two nights prior - but I finished those meds. this morning until the round in three weeks. So I will be better prepared. Had to take a sleeping pill around 1:00AM or I would have tossed all night. I am just so grateful to be on trt and moving forward - no complaints! Eating more protein and my appetite is good. Just want to keep my schedule on time as you said Rhonda.

Good Luck Rina!
Hugs,
Jean

Hi glad it's working OK so far. In general mugas should be every 3 mos, but I think you get a little slack if everything is OK after long periods of time. I asked to be switched to echos to see if they're easier. ( I have a large machine 2" from my face phobia).

Don't remember the $ as we BC people usually max out on out of pocket costs. Emend is priceless though.

It sounds like you'll be able to deal with chemo, so best wishes, BB

nite time head covering
 

I have a question about after you lose your hair. Did any of you sleep with anything on your head at all? My oncology nurse mentioned that since we lose most of our body heat through our head, although we are going into summer, that she recommends wearing a cotton covering of some type to sleep in. Just never thought of that and was wondering if any of you did, and if you did, what did you wear?

Thank you,
Rina

Check out the TLC site. http://www.tlcdirect.org/Default.aspx I am sure there are copies of the catalog in your onc's office, but this is just as convienent. I wore light cotton caps to sleep during the winter. I tend to have hot flashes, so the caps came off as needed.

thank you for your prompt reply, I appreciate it. that's what I love about this forum....someone always has an answer and is willing to help.

Rina

Hi;

I also used small caps at night as I like the room cold. I found the first treatment the worse. It is amazing what you can get used to. The first time I walked into the chemo room....about 40 beds and chairs.....it took my breath away and I remember think it was going to be hard not to admit I might be sick after this....lol. Once my hair really started to fall out I had a hairdresser clip it all off...that was better as the little roots kind of hurt as they come out....perhaps itch is a better word. I lost my body and head hair on AC and my eyebrows and lashes on Taxol. There is a "look good feel better" program which is cool....they give you lots of makeup, creams and stuff and advice for how to do wigs etc. It was nice to meet with others locally going through the same thing. Ask at the chemo room as they'll know how to hook up with it. The free package is worth a couple hundred dollars.....which impressed me....lol. Watch out for constipation at first. I suffered with the first one and after that I took these little red capsules each day and was fine. The first treatment is quite a shock to your body....it also adapts. Don't drink tomato juice....it made me throw up. Keep us posted on your journey.

Cathy

feel good look good program
 

My oncology nurse called to find out when the next program or presentation would be but it isn't until July 17 or something so I was really disappointed but still plan on attending with my daughter. I also have a book on wigs and scarfs and caps so I will check those items out too. Thanks and I just love that I found this forum. Can't imagine doing this alone.
I am feeling great so far,,,,two days following first tx.
Rina

Hey Rina,

When I bought my wig, they had a package deal for wig shampoo, head coverings etc.

Bandanas, groovy scarves from the 80's ( that I wore around my neck or waist) also work. As it's summer you may do without.

It's been 9 mos since I began chemo. I have enough hair to keep me warm in summer but I feel it's not long enough to look like any style someone would purposely have done. So spend what your budget allows as you will be in this stage for awhile. Don't forget to check if your insurance pays for the cranial prosthesis. BB

I might have gone a little overboard with the wig thing but heck, I have to make fun of this right? I bought this inexpensive but human hair, one piece headband and hair attached, shoulder length to wear strictly to the health club,(G-d willing I will be able to go and workout) It looks as if it would be my hair,(although different hair color, my natural color), with a thick black headband that can act as a sweatband...cheap only $35. I also bought two other fashion wigs, one synthetic replicating my highlighted hair only a bit shorter and with bangs and then I bought a human hair wig replicating my hair exactly only that will require maintenance and I don't know if I am going to like that part of it. What do any of you thing about that? It's so easy with synthetic wigs because it's low maintenance, although they do have their problems with heat and all. Oven doors, cook tops etc. Feedback would be appreciated if it isn't too much trouble. Also did a lot of you lose your eyebrows and eyelashes too. I am on A/C for chemo now followed later by taxol and herceptin.

Thanks for everything you guys are the best.
Rina

I wore a terrycloth cap during the winter months. I couldn't find one in the stores so I ordered it thru the TLC catalog.
Sometimes I would take it off in the middle of the night because of hot flashes.
If I didn't wear it when I went to bed, I would end up putting it on in the middle of the night due to being cold. It does make a differnce, so if you're questioning whether to get one or not, I would recommend getting one.
Now that warmer weather is here, I usually don't wear it; But I have about 1 inch of hair now, so maybe that makes a difference too.
If it's a chillier evening and I'm at home, I put it on at that time too (even now).

thank you again for your input. i did end up ordering one from the tlc catalog online. figured it is good to have. i also ordered this little lace cap that is suppose to catch your hair as it falls out so it isn't all over the bed and pillow. i here like you many b.c. patients hair grows back more grey or white than it was before. wonder why. my natural color is brunette but i highlight it and have a lighter basecolor added because of grey up front than in back but who knows, been so long since i saw my uncolored hair so probably for most of us we may seem like we grow in after chemo more grey but probably some of it is that we just don't know how really grey we were before chemo. i also heard it comes in curly and sometimes with more texture but relaxes as it grows.

Seems so silly we are talking about these things when i just read about how gravely ill one of the young moms on here is....diagnosed with a form of leukemia and is in hospital or going into hospital. made me cry so. i pray she will be okay.
rina

Nap time
 

Rinaina,
If you enjoyed THAT nap, wait until you get the Herceptin with Benadryl.
Wow...that is one nice nap! lol

funny, look forward to that one i think. i like your sense of humor!
rina

I had synthetic wigs. Althoug styling was a breeze, at 9 mos, they are really looking tattered. Do not drive with your car window open. For the price, the synthetics looked more prettier but eventually they frizz up. Sounds like you are on your way. Best of luck> BB

My hair came back sooo Grey. I was finally able to have it colored 3 months out of chemo. last March. I actually won a make-over from my beauty salon. They held a contest which required a written letter expaining why someone deserved a make-over. My oldest daughter wrote the most beautiful letter and I won. It was great. I got a highlight, haircut and style, manicure, pedicure, flowers, balloons, a cake, and they would have bought me lunch but I had too many butterflies in my tummy to eat.

As far as wigs go, I bought a human/synthetic combo which is supposed to be the best of both worlds. It looked and felt very natural and was easy to take care of.

Love and Blessings from Lu Ann.

Wow LuAnn, good for you for winning that makeoverl, can't think of anyone who could have deserved it more. Well, that's a first, never even heard of a combo wig of human and synthetic. Sounds for sure like the best of both worlds. Sorry to hear the synthetics get all tattered over 9 months old because between my 3 remaining chemos and then taxol and herceptin to follow, I will still be needing my wigs for at least that long. Wasn't planning on having to repurchase new wigs again but again, we do what we have to. Just curious, are there many out there that didn't go the wig route at all?

Rina

Rina, I bet you won't have to wear a wig for very long. Once you stop chemo the hair does grow back. As soon as I finished taxol at the end of January, I could see the little hairs starting to grow back on my head, my eyelashes and eyebrows came back quickly. The hair is now to the point that I put a colour on it this weekend because I couldn't stand the weird washed out grey colour it was and I'm happy to be "wigless". I only needed my wig for 5 months. And your hair won't fall out with herceptin.

I shaved my mom's head on Thursday night right before her second treatment. She was afraid to have it fall out and decided she wanted to take control over the situation. I felt like I was going to faint when I cut off the first few pieces, but it was all down hill after that! We actually made a party out of it!

I bought my mom new summer clothes for the occasion and big, beautiful earrings. Look good feel better recommends wearing big earrings when you lose your hair because it makes you feel better. I would highly recommend going to the program in July! I went with my mom, and we had a blast! The makeup they give you is amazing. It's also fun to sit around with other women in your situation and talk with them.

My mom is beautiful without hair! I am so proud of her--she looks so strong!

We're going wig shopping again next weekend. I can't wait.

Rina--I hope you make a party out of it in your own way too! I am sure that you will be absolutely beautiful without hair!

Dear LovingDaughter,

Your mom is so fortunate to have a loving caring daughter such as you. I am blessed with a wonderful daughter as well and thank G-d everyday for this. I love all of your suggestions and especially the one of making a party out of shaving your mom's hair. My stylist has offered her services and will do it in the privacy of my own home for me so I think I will take her up on her gracious offer. I look forward to the Look Good Feel Good Program, I just wish that it was sooner than mid July. My daughter will accompany me. I guess we just missed the last one. I heard the make up you get is amazing. Can you share with me what you got? Hope your mom is hanging in. We have very similar cases. I am er/pr negative her2+++ grade 3 stage 1, my nodes were negative and margins were clean, tumor was 1.4 cm. Best of luck to her. Just noticed a change in the health of my nails this afternoon. This after just one treatment.
Rina

We probably got at least twenty products. Most were made by the leaders in the industry--Clinique, Lancomb, Estee Lauder, Mary Kay, Aveda etc. She got SPF 25 sunscreen (because you're highly susceptible to getting a sunburn when you are on chemo), several different types of powder (some women develop darker patches around their eyes), eye liner, very strong moisturizing cream, several different shades of lipstick, eye shadow, Q-tips and blush. The whole concept is that if you feel like you look good, you'll feel better. It's really neat!

I love reading all of your posts too! I look forward to hearing from you more as you get further along on your journey!

When I started chemo I went and bought a wig. I must admit though I only wore it 3 times! I much pefer hats. It's so much easier to just throw on a hat and go. I have quite a selection of hats in all colors and styles. I finished 4 rounds of A/C and 4 round of Taxatore and now my hair is growing back -- very slowly -- have a lot of "peach fuzz" on my head. Can't wait to see what color it comes back.

Happy you have finished your treatments and your hair is growing back. Look forward to that day. I hope I will feel comfortable with just hats because I can't see how it will be comfortable in the summer wearing those wigs even if they are very light weight in construction and have a very thin lacy underlying lining that is incredible. Just don't know if I am too vain though. Have to admit, I care a lot about how I look and will care even more I think once my hair is gone unfortunately. I know it sounds shallow but I want to look even better because of the cancer. I know I should be happy to be alive and believe me I am and I will fight this cancer forever if I have to but I will always care how I look I think unless I am just too sick to care which I pray never happens. Sorry if I offended anyone with my vanity.

Rina

I wore a knitted cap at night. I got it from the Wellness Community, which has a hat rack with caps that people donate. During the day when it was cold, I wore hats. Then it got warm and I stopped wearing hats. I am being militant, but I don't think I should be embarrassed about not having hair (It's growing back now, but I look like I have a buzz cut). Also, there are so many survivors now that I think we should go public so that society gets used to seeing bald women walking around. But that's just my soapbox. I didn't have the nerve to go bald until my head started sweating and I was uncomfortable. I see it as a teaching opportunity. I wear my pink ribbon pin and my pink bracelet so that people who wonder about my head might get the answer if they don't want to ask. Twice women have come up to me and shared their BC survivor stories. I liked that.

Rina, when I shaved my head I slept with a cotton cap the first two nights, after that forget it, I have hot flashes so the cap is gone!

Tomorrow morning I will be going to the Look Good, Feel Better workshop. Has anyone else been to this workshop? http://her2support.org/vbulletin/images/icons/icon5.gif

Guess I just missed the most recent Look Good Feel Good Program here and the next one, which I will go to, is in mid July. My daughter said she wants to go with me, should be fun. Heard you get great free cosmetics, creams etc. Enjoy!

Rina, I first booked the workshop last month in the hospital where I have my chemo treatments and I was scheduled for July 4th! In French to boot!

I have a friend that works at another hospital and asked her to find out if they gave the Look Good Feel Better workshop. They do so 2 weeks ago I called and they told me they had room on May 31st! In English!!!!!

The French workshop is given every Tuesday to 12 women.
The English workshop is given ONCE A MONTH to 10 women!

Figure that one out!http://her2support.org/vbulletin/images/icons/icon5.gifhttp://her2support.org/vbulletin/images/icons/icon7.gif

maybe i will call myself to see if there is another one, the onc nurse called for me but i have the book and the number so i will call. thanks

When I was first diagnosed in 1999 I went out before I started chemo and had my hair cut short and bought a wig. Within 2 wks. of starting chemo. I started to loose my hair. When it started coming out in large amounts my husband shaved my head for me. I wore my wig a couple of times but decided it was more comfortable to just wear scarves and hats. My sisters had fun finding me interesting hats. I recovered and my hair was thicker than before. In 2004 I moved out of state and got rid of my wig after holding on to it for 5 years. I was diagnosed with a met to the Liver in Sept. 2005. Had 3 rounds of Abraxine, Carboplatin (every 3 wks.) and Herceptin (weekly), Surgery and then 3 more rounds of same with Herceptin every week. This time I just wore the scarves and hats. They are much more comfortable. I wore a scarf or knit cap at night because my head was cold. It would sometimes give me a headache. I am on weekly Herceptin now and my hair is about 1/2 inch long now. I just wear a baseball cap or scarf when I go out to protect my scalp. I am receiving Herceptin weekly at present.
Debbie

It seems so many of us her2neu+ patients have reoccurences. Can I get feedback as to just how many of you have had reoccurences? It's not that I don't know this happens a lot, I am just curious how much.