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new here chemo braids

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

I am new here, and am currently on day 17 of first Carbo/Taxol chemo round.
I had radical hysterectomy Feb 25 and was found to have stage 3c endometrial carcinoma.
I start internal HDR after next chemo. Will start External beam after 3rd round of chemo, then 3 rounds after.
THought I would share my little experiment...and then ask a question.
WIth quite long hair, I was trying to be creative in my efforts to save it, and have had it corn braided.
I have then added elastics to the top of the braid as well
My plans are to save the braids as they fall out and sew them to a thin cap and wear it under hats.

Currently lots of hair has "fallen out" however it is "contained with in the braids.
I am wondering on average when "most" of the hair falls out, I had heard 14 days, but going to to 21 days

thanks
janet

deanna14
Posts: 733
Joined: Oct 2008

What a creative idea! I wish I would have thought to do something like that. LOL. It would be pretty cool to have my own hair to wear under my caps. My hair started to come out on day 14 and was mostly gone within about 3-5 days.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Long ago?
When did you start chemo deanna?
janet

deanna14
Posts: 733
Joined: Oct 2008

I started chemo the end of january, I had 3 treatments of carbo/taxol 21 days apart. My fourth treatment came 5 weeks after 3rd due to low blood counts. My hair has actually started to grow, but I'm sure it will fall out again within a couple of weeks after getting the 4th treatment. If my counts stay up I will have treatment # 5 on the 27th of April. Praying for a healthy body!

Ro10's picture
Ro10
Posts: 1390
Joined: Jan 2009

What a great idea. I hope it works to save the braids. My hair started falling out on day 12 after my first chemo. It took about a week for the majority of it to fall out. There was very little left by the time I went to my second chemo. Good luck with your hair loss and your treatments. Welcome to the site, but sorry you have to go on this journey with us.
Will your internal radiation be inpatient or outpatient? I just started my external radiation this week, and will have to go into the hospital for the internal radiation. Your treatment plan sounds different than most of ours has been. Where are you getting your treatment? Wishing you the best.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

My treatment consists of three chemo (carbo/taxol) 21 days apart
Starting two days after my second chemo therapy I will have HDR internal radiation, it is an out patient procedure, takes about 45 mins/
and I will have that 3 weeks in a row.
Then the day before my third chemo I will go through simulation for External beam radiation which will be daily for 5 weeks.
Then 3 more course of chemo.

Shaved everything off yesterday and all the braids are safely in zip lock plastic bags, waiting until thursday when a group of my "sewing" friends are going to confer as to the best way to do this,
Will keep you posted
I am glad to have found this site, and people who are going through the same thing as me.

I am in Oregon

janet

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Janet I am glad you found this great group of people, they helped me through the bad times during treatments. It hit me the hardest when all my hair was gone. My last eyelash just fell out and the new ones are starting to come in. I have very fine fuzz on my head now. My last chemo was on March 11th and I am now in remission. You have a long road ahead of you but we all have done it and we are here for you. I too live in Oregon outside Portland. Good luck with all your treatments.

Living with hope,
Sharon

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Hi Sharon
I just read your info,
So your ct scan must have been fine...?

Did you have a lymphadectomy when you had your hysterectomy, or did they just test some nodes
janet

I am having my radiation in eugene

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Janet, my latest scan was great and the official word was remission. I did have lymph nodes taken out and have leg problems from that. They were clean. My mets to the lungs came in about exactly 1 year from having my hysterectomy and radiation treatments. The nodules were small so the chemo got to them. I guess the cancer cells got out before the hysterectomy and radiation via blood. I did not have chemo the first time around, maybe if I had it might not have gone to the lungs.

I wish you well with all your future treatments and tests.

Sharon

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Hi Sharon
I think it is great that you are in remission.
I guess when the nodes are negative and the washings are negative it is unlikely to spread, so they don't suggest chemo.
The more I read about all of this the more I realize that endometrial cancer that has gone beyond the stage 1A or 1B stage is relatively rare when you look at all of the other cancers out there. It seems as though the amount of research is likely hampered by the low numbers of patients to research, so it is hard to judge just who they should be exposing to chemo.

Sounds like they caught the nodules while they were small...
best wishes
Janet

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

hello Janet
sorry this post is quite late but just looking at all the posts so here goes
I to had very long hair past my butt , had it cut off just before first chemo, cut to my ears, shock shock shock, but it is extremly thick , I dont usualy wash my hair but every 3 to 5 days, so when it started lightly falling out after 2 weeks I went to 5 day wash, had a lot fall out last wash, but the doc was amazed that it was still there, sort of, and same with the chemo nurses, 24 days and still have 50 % of it , just dont want to loose it fast, it has started to come out much faster now, scarry, but have my hair debating on using it or giving it to locks of love, while living in memphis I drove horse drawn carriage, and my boss set up a deal with st Jude hosptital to give the kids and their parents free rides, I did MANY MANY and taught the kids how to drive my "push button verbal command horse" seen lots of bald heads and lots of hats, and asked them about wigs they said , still waiting on one that would fit me.
so may just go with locks of love and use the wig I got from cancer society,
how did you do with the braids?

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