Ladies going through chemo - how are you doing? Or those just starting or curious

mary8237 said:

hair loss

I was recently diagnosed with UPSC  stage 1B and will begin chemo in 3-4 weeks with taxol  and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance.  Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I  feel blessed I found this site.

Hi Mary.  I started having scalp pain right before my 2nd chemo (just finished #4 last week).  I had already cut my waist length hair super short.  When the pain started, my husband buzzed my hair and the pain went away. 

I have not worked since my surgery in April.  My doc says many people do work during chemo, but my chemo hang-overs have been so rough I don't understand how.  I do understand the financial need to work.  My medical bills (despite insurance) are pilling up.  In a month or so, I hope to return to working at a job I retired from 2 years ago to get those bills paid. 

I understand having lots of questions.  When I would ask my doc these types of questions, all I ever got was "well usually......".  Not much help when you are in a black hole in need of a life line.  The folks here have been a great help and comfort for me.  Lots of good info and resources. 

Editgrl said:

Hi, Mary

I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it.  I was out.  I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well.  The procedure was easy.  There was some pain after but I didn't even need to take ibuprofen for it.  I did have to use my hand and arm on a limited basis for a few days, though.  It does make the chemo much easier.  I did not want to risk the damage to soft tissue that Taxol can sometimes cause.

As far as working, everyone has a different tolerance for the chemo and the side effects.  I have only had one treatment, and my side effects have been minimal so far.  However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.

If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun.  I am so glad that I did it that way. We had a blast trying on different styles and colors.  But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo.  I'm guessing mine will start to go this weekend.  Probably won't wear the wig all the time, but I am glad that I have that option.

Ask away with the questions.  Someone here will be able to help.  The journey is a lot less scary with these ladies.

Chris

 

Mary,

I lost my hair, but not compeletely right before my second chemo. After that I had falling again, but still not the whole.

I don't have port, my doctor even did not ask me for it.I'm stage 4.

I stopped working right after I was diagnosed. I got Cobra insurance. I want to work,but it depends of my condition after the chemo is over.

Agry, this place is great for us to ask and share.

Rjchirp said:

hair loss

Hi Mary.  I started having scalp pain right before my 2nd chemo (just finished #4 last week).  I had already cut my waist length hair super short.  When the pain started, my husband buzzed my hair and the pain went away. 

I have not worked since my surgery in April.  My doc says many people do work during chemo, but my chemo hang-overs have been so rough I don't understand how.  I do understand the financial need to work.  My medical bills (despite insurance) are pilling up.  In a month or so, I hope to return to working at a job I retired from 2 years ago to get those bills paid. 

I understand having lots of questions.  When I would ask my doc these types of questions, all I ever got was "well usually......".  Not much help when you are in a black hole in need of a life line.  The folks here have been a great help and comfort for me.  Lots of good info and resources. 

Thank you for responding.  It really helps to know what to expect. Have you heard of anyone in stage 1 who has declined chemo initially and chose   observation? 

Editgrl said:

Hi, Mary

I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it.  I was out.  I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well.  The procedure was easy.  There was some pain after but I didn't even need to take ibuprofen for it.  I did have to use my hand and arm on a limited basis for a few days, though.  It does make the chemo much easier.  I did not want to risk the damage to soft tissue that Taxol can sometimes cause.

As far as working, everyone has a different tolerance for the chemo and the side effects.  I have only had one treatment, and my side effects have been minimal so far.  However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.

If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun.  I am so glad that I did it that way. We had a blast trying on different styles and colors.  But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo.  I'm guessing mine will start to go this weekend.  Probably won't wear the wig all the time, but I am glad that I have that option.

Ask away with the questions.  Someone here will be able to help.  The journey is a lot less scary with these ladies.

Chris

 

Hi Chris,  

Thanks for the information. I like your idea of shopping for a wig with friends/ family . I'm thinking of being a redhead for awhile. I plan to purchase a wig, but also saw some really attractive caps also. I'm on the ledge about taking the chemotherapy, but your info has helped with my decision regarding the port.At what point post treatment would the port be removed?

ConnieSW said:

Atta girl

Attitude will get you where you need to go.

Your support helped me more than you could possibly know.

My head is still very sensitive. The shorty bristles gave me some trouble last night in bed. Felt like little needles sticking my scalp. I'm hesitant to use a razor to clear out the bristles. Concerned that I'll get a razor burn. As it is, I have a huge red spot on the back of my scalp. I don't know if that was already there or if the clippers did it.

This morning I only have one small spot that has that needle effect. I have a feeling it is going to be this way off and on until all the follicles die. In the overall scheme of things, this is minor though.

I did wear a little headcover for a while in the evening. That lasted until my first hotflash. Then off it came! I ordered some cotton headcovers yesterday. I'm hoping they are cooler so that I can keep them on. If anyone has suggestions on what to get, please share. This is going to be trial and error for me I think.

I hope everyone has a great day. I'm off to chemo shortly!

Love,

Cindi

ConnieSW said:

Have you

been to the American cancer society's TLC site?  You can also order their catalog.  I liked the cotton kerchiefs with the lightly padded/ quilted part that goes across your forehead the best.  It helped it stay in place and was more flattering than just a flat scarf.  They also come in a soft interlock knit if you want a solid color but they are a tad warmer.  When it gets cooler in a couple months, let me know if you are interested in a very flattering, comfortable interlock knit cap that my daughter found on etsy.  The designer is a cancer survivor.  I'll ask my daughter to help me recall the name of the shop.  Before cancer I could never stand anything on my head, no matter how cold it got.  Now I've become a hat person.

you mentioned the TLC site.  I just went there and saw some things I think I will get.  I have always been awful at wrapping scarves and I really love those kerchiefs.  I am definitely going to get one of those.

On the hair loss front, my scalp is beginning to hurt, so I guess I am getting close, but nothing is falling out quite yet.  Tomorrow is 2 weeks post 1st chemo, so I'm thinking I'll begin shedding soon.

I also registered for a Look Good, Feel Better workshop later this month.  I don't wear a lot of makeup, but if they can show me how to fake eyebrows decently, I figure it's worth it.  I have essential tremor, so any use of eyeliner to help define my eyes is probably going to be out of the question for me!

TeddyandBears_Mom said:

Eating

LouAnne and Cuculigata,

One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.

I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste.  My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.

My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!

LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good.  Funny how we all react differently to the foods. :-)

All,

I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep.   Are any of you experiencing this due to chemo?  I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.

Input please.

Thanks,

Cindi

My naturopathic oncologist has me on 10 mg of Melatonin, 30 min before going to bed.  Works like a charm!  I have no trouble sleeping at all.  She started me out on 20 mg. but it left me feeling a little groggy so we cut back o ten and it provides the same sleep support without the grogginess.  Have told several of my friends who have trouble with insomnia about this and it worked for all of them as well.  It's worth a try!

mary8237 said:

hair loss

I was recently diagnosed with UPSC  stage 1B and will begin chemo in 3-4 weeks with taxol  and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance.  Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I  feel blessed I found this site.

You are so lucky to be stage 1B!   Yay!  The nurses told me when I went in for my first chemo that my hair would be gone before I came back for the second treatment.  They were right.  Do yourself a favor and get yourself wigs and head coverings before you shave your head.  I had few side effects from carbo-platin and taxol.  I think everyone is a little different, but your own detemination will be a big factor as well.  We can do much more than we think!  I had a port installed this year and all I can say is I wish that I had done it sooner.  It makes everything much easier.  It is done with "twilight sleep" anesthesia.  I plan to leave mine in for the next couple years.  If you don't have any problem getting an IV line in, and you are only 1B, you may be "done" after this.  It's up to the individual.  I wish I had done it sooner. Good luck! - Helen