Starting Chemo March 2015

Trvler

What questions should I ask before rads?

KBeee

Allison, I would ask how many, how many boosts, will they use a bolus, how often, what fields will they radiate, how might it affect the reconstruction, what can you expect as far as skin reaction, what can you use for your skin, how soon after surgery can you start, short term and long term effects, activity restrictions...

IndyGal35

Diane, I'm so sorry that radiation has been so hard, and I pray that this last week of treatment passes quickly without getting worse.

Allison, I would also ask how many Greys you will be getting and how that compares to your RO's "normal" total radiation dose used for breast cancer patients. I'd also ask how many fractions (treatments) you'll need. I think most of us range between 20-33. Ask how many fields they'll radiate. That'll give you a better idea of whether the radiation will be dispersed or focused more in certain areas. Finally, ask the RO if there's a product that you should be using now to prep and moisturize your skin in advance. My doc recommended Triple B cream by Bass Farms, and I started using it 2 weeks before I did my sim. Hope that helps!

IndyGal35

PS. Thank you to Maryellen and Katy for the beautiful cards. We just checked the mail after taking a long holiday weekend to visit family in MD. It's our first trip since diagnosis, and I was sooo sad about returning to reality tomorrow. Your words of encouragement gave me the boost I desperately needed. Thank you! I'm excited that the bracelet is en route to Indy. I can't wait to take it on some adventures.

Lee

Meme117

Lee so happy you received it. What does greys mean? Do you feel the prep cream made a difference?

Katy you and Jack will be great, so nice of you to help those in hospice.

Karen thanks for the let of questions, what is a bolus? I saw your photo on the rad forum, is the area painful?

My eyelashes on the bottom are still wacky, one here one there, how long to grow back?

shaz101

Diane, I'm glad you're posting. I hope the pain killers keep you sane. Xxx

Sloth, great charms!

Leigh, I hope you are doing OK.

I had a session with the Physio in the pool today, after that I joined the gym. Hopefully it'll help me to build some strength back. There is a pool, spa and sauna there. So I can do as little or as much as I want. Hopefully I'll find out what is causing me pain and stiffness in my joints, then there will be nothing stopping me. My fatigue level is starting to get better now so hopefully when I start work on monday I won't end up asleep under my desk.

Katy, you're so amazing and caring. I am so grateful to you. You keep me sane xxx

KBeee

Maryellen, I don't think it was my photo; thankfully I don't have painful areas yet; I have only had 8 treatments. I am taking pictures each week and documenting daily changes too so I have that info at the end for anyone facing the same thing with a similar protocol. Grays are the unit of measure for rads. 15-20 greys per day (or sometimes expressed as 1500-2000 centigreys per day). Skin damage is often based on cumulative dosage because the basal layer breaks down faster than it can be replaced. At 10 grays, you typically start to see pink, at 20, you typically will see red areas, at 40, dry desquamation occurs, and at 50, wet desquamation can occur in areas. These are averages, of course, and there's great variation in individuals, and the use of a bolus affects it greatly. A bolus is something placed on the skin to draw more of the rads up to the skin area, so it's use leads to more skin damage. My tumor was close to the skin, so I get it every day. Some docs use the bolus in small areas, some in big areas. Some never use it, some use it every couple days, and some every day...lots of variation. Mine is approximately a 12" X 18" gel square. They use it daily during 4 of my rads zaps. They move it for the last 2, because the machine hits me from behind on those, so they move it more towards that area.

Leighrh

I 'm here! I'm here.... logged on yesterday.. wrote a whole post... ipad died and I lost it......

But ... I was DEPORTED yesterday and it feels sooooooo good!!!! OUT OUT DAMN SPOT!! LOL Still a little sore of course and can't take this plastic and gauze off until tomorrow but it's ok.

This weekend was ok... felt kinda bad and stayed in bed a lot, but I felt a little better knowing it would be my last weekend in bed! Still have really yuk nails and really yuk mouth but I am feeling better today and hopefully it just gets better from here! I can start back exercising next week and I can't wait for that!! Still very little traces of hair...... I am trying to let that go but if left to my own devices I will sit and stare in a magnifying mirror searching and searching..... LOL I have to accept that it will come back but not when I want it too >

Allison, I am so glad you are on the mend. I am sorry I didn't make it to come and see you. I just didn't feel up for that hour drive in all that labor day traffic. Next time you go for your check in let me know and I will def move moutains to come!!!

eheinrich

Does chemo fuzz face go away ever?

ksusan

Yes as do the crazy-hairs on your scalp.

eheinrich

I'm so relieved. Between my hair, road map of scars and now crazy lopsidedness that can not be hidden by hidey equipment like a knitted knocker I've had enough. But for some reason the face fuzz has become a target of my anger.

ksusan

I hear you, sister. And when the hot flashes wake me up at night, I try to think, "That proves the Tamoxifen is working!"

eheinrich

I forgot how much I love sweating and washing sheets!!!

Jackbirdie

yeah me too on the waking up and the sweating. It better be f$&$ing working

ksusan

At least once I'm done with Aquaphor I won't need separate sheet/towel/tee shirt laundry! I look forward to the day when I can rein in my "beauty" regimen to my more normal shower-toothpaste-moisturizer-deodorant-run out of the house routine. This cancer body care deal is the girliest I've ever been!

In other girly news, I got my first post-chemo haircut today to tidy up the edges and crazy-hairs. It's not a very femmy cut, but it looks like a haircut rather than cancer-head.

KBeee

A haircut...woohooooo!!!!!

Jackbirdie

K-no pic of the haircut? Or did I miss it in my endorphin stupor (doesn't take much)

You are doing so well Kbee! Very impressed with your activity! At work. At home. Everywhere.

shaz101

I'm at the hospital for my last official visit. Its for the 'survivorship clinic ' I'm so tempted to go without my beanie... it's just the widows peaks that I'm worried about. The fatigue is lifting more each day. I'm starting to feel my spirit return. I even joined a gym yesterday. Now I just need to sort my joints out before I do any real exercise. I'm just planning on using the pool,sauna and spa to start with.

shaz101

K, we need a pic! Wow our first haircut (iI think, unless I've missed someone)

I still have face fuzz too! I was wondering if there was a was to get rid of it?

Leigh, great to hear from you.

Jackbirdie

Sharon- GREAT NEWS!!! Fatigue lifting, spirit returning. Music to my ears.

You look lovely. I say burn the beanie! You are rocking the look. You really look great. And a beautiful smile too! 💃🏿💃🏿

IndyGal35

Our first haircut!!!!!! This is a huge moment for our group!!!!

Leigh, every day should get a bit better. I'm so happy about your deportation too! Was the removal as sore later as the install?

Maryellen, the prep cream has certainly moisturized my skin a lot. The RO has me using it 3-4 times a day and drinking lots of water. I had rad 5/25 today. I'm just starting to see the first traces of pink, but I'm not feeling sore yet. The RO said that her goal is to keep me from even peeling. A girl can hope!!!

Sharon, you look gorgeous in your pic. Forget the beanie. Don't hide an ounce of that beautiful face and spirit.

shaz101

I've done it! I'm in the waiting room without my beanie. I felt you all behind me and Theresa's post was close to my heart.

eheinrich

Sharon - you look so pretty. F*ck beanies.

I'm also getting a hair clean up on Friday - mostly just the back of my neck. I spiked it today! I pop up a pic later.

shaz101

Thanks lee and katy. I knew I felt someone there!

Edited to add... and eileen! You girls are amazing. Thankyou for your support xxx

Jackbirdie

Sharon YOU ARE THE BOSS!!!!

littleblueflowers

Sorry to barge in, but I sensed a fellow werewolf face sufferer. Gawwwwd why so furry????????

KBeee

I shaved my face fur last time and to this time too. It does not come back as stubble or thicker.

Sharon, you are gorgeous!

Yay for all of you getting haircuts. Shaving face fur is my only hair control at the moment

Italychick

Sharon, you know how to touch someone's heart! Love you for starting this wonderful forum! Glad you were brave and ditched the stuff. I walk around now like I mean to have this look. Well, except for when somebody asks me a stupid question and then I just tell them I'm a lesbian, feels great! And certainly shuts them up quick haha. Still a lot of homophobes out there, particularly in the Midwest. So glad I live in California where I could go out with a purple Mohawk and nobody will bat an eye.

Got my first "haircut" Tuesday. Took like three minutes. The guy trimmed up my neckline and actually thinned the back of my head! He has done lots of chemo heads and said best thing is keep the back trimmed nice while the top grows back in. I freaked out for a minute seeing the hair on the floor and knowing what it took to get it back. Then shrugged and said to myself oh well, I'm just happy I had enough that he thought it needed thinning!

Littleblue damn this face hair! They get ingrown and create zits too I hate it. Seriously, does anybody know when it will go away? Or do I go to the dermatologist and get them zapped?

Allison, so glad you are doing well. I was worried about you. And Eileen too, glad you are holding on to the TE.

I was in Chicago for a week visiting my brother, dad and new nephew, and man I came home to the worst heat ever. In San Diego! It was over 80 degrees at my house this morning at 8:00, and I live close to the ocean. And there is not a breath of air. Needless to say no bike ride for me, I'm worried about heat stroke.

Katy, I saw somewhere you lost a pillowcase. Did you look in the guest sheets or in the guest pillow case? Those things have a way of hiding inside another sheet or pillow case.

The office today was hard. Everybody was waiting for me to get back I guess so they could share all their cancer horror stories with me, who was recently diagnosed, what they are doing to help them, etc. ugh, I could have done without that. Maybe once my hair grows back I should look for a new job or something where nobody knows anything.

Having said all that, it is good to be back home and read about all my sisters and how they are doing. Love you all!

slothabouttown

I wanted to get a trim up before speaking at a fundraiser last night but ran out of time. I need help with my neckline and these new curly bits over my ears. After my presentation last night a woman was telling me how she only contributes to animal welfare causes. Then she told me a story about a cancer foundation that solicited her.... the whole time she was talking all I could think was that.... I must not look like a cancer patient anymore! Yay for hair and eyebrows! Woot woot!

Lee, you know the thing about getting lots of protein during rads? I was told to shoot for 100 grams but to at least get 60 every day. I did my best and I think it helped keep fatigue at bay.

Jackbirdie

just a quick note to share my harvest this evening. So peaceful, just watering and picking.

Also, Tutti wanted to make sure everyone knows she is scheduled for sx next Monday. (9/14).. And she is staying overnight! Omg. I've never been away from her since I've had her.

She wants to say she appreciates all the tips on nails and constipation, as these are both very important to her.

And she wants to know how long it will be before the hair grows back on her stomach where they shave her. And that she thinks facial fur is beautiful!