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

AWK
Posts: 364
Joined: Mar 2013

Hi ladies!  I know Teddi Bear, Editgirl and I are in active treatment.  I thought it would be good to check in, see how you all are doing, share ideas, information etc.

i am in a clinical trial consisting of Aldoxorubicin and Gemzar infusion on day 1, gemzar on day 8, neulasta shot on day 9 and start all over again on Day 22 (reset to day 1.).  I have been pretty beat for about four days post treatment and rebound in time for the next one.  In my case I am having issues with platelet counts, hemoglobin to on my off weeks I am getting transfusions to boost my marrow production.  They are seeing some of this with other trial participants and able to manage it.  My doctors also noted that given I have been in continuous treatment now since April 2013 it also makes sense that my bone marrow production needs some "help".  

I have few days where I wake up feeling energetic and well rested but when I do - watch out world!  those are the days where I go for a gentle horseback ride, run errands, see friends for lunch.  

How are you all?  Sending hugs, keeping you in my prayers - Anne

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Anne, First... Thanks for starting this. I think it will be a great help.

My GYN/ONC suggested 6 rounds of Taxol/Carbol and then radiation.

My local ONC suggested smaller doses weekly.  So far, I have had two weekly treatments. The first one was relatively easy the live with. The second one, not so much.

He said I could have a cumulative effect and that certainly was the case. Not sure what the next step up will bring.

I had a 36 hour window of what we probably all call rough. Heavy fatigue and stomach "aches". I did not have constipation or diarrhea, but my stomach felt like it does when a person gets diarrhea. And painful gas after I ate.  Slight muscle aches in my left leg off and on.  This all hit mid-afternoon on day 2 post my chemo day.

This is day 5 post chemo and my stomach still doesn't feel good. But, it isn't so bad that I can't function. I did finally take an anti-nausea pill today to see if it would help, and it did a bit. So, I think I made a mistake thinking I didn't have nausea. I'll admit, I have not been sick in years, so I'm learning what symptoms really mean.  I am not fatigued today but my energy level is not high either. However, I am pushing myself to do stuff. I don't think laying around all day is healthy.

I would love feedback from anyone out there doing weekly treatments. And, those doing the standard 6 too. Because I may ask to switch over to the standard if it will buy me more good days. Not sure yet. Also, I may be forced to switch over if my blood counts don't rebound.

Anne, I hope you find many more good days during this trial. I think about you all the time. Glad to see your posts today.

EditGirl, I have also been thinking about you and how you did with your first treatment.

Love to all,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Thanks for starting this thread, Anne.  It will be good to track everyone's progress and experiences.

On Friday I had the first of 6 carboplatin/taxol treatments scheduled every 3 weeks.  I made an effort starting two days before chemo to really hydrate myself and get lots of protein in my diet for those pre days.  Had Decadron and Zofran pills prior to chemo and Zofran for 48 hours post. I also have a prescription for Compazine but have not needed it. Saturday and Sunday I felt pretty good, except for feeling constipated and a bit tired Sunday night.  Didn't sleep well Sunday night with stomach pains.  I have found walking helps, much like we do with horses that are colicking, so I did laps around my house at 2:30 in the morning. Those continued yesterday most of the day along with just generally feeling kind of crummy.  Still no nausea. Stomach pains went away as long as I had something in my stomach, so I was snacking all day long when I wasn't napping. Constipation finally resolved itself.  I am now drinking tons of prune and apple juice, enjoying my fruit, and continuing with colace.  Hope that heads off any more of that! This morning I feel pretty good.  Stomach pains are way better today, just some twinges in my abdomen, but I am going to try to keep my tummy full anyway. 

I have read that days 4 and 5 post chemo could be the worst days, so I am cautiously optimistic based on how I'm feeling at the moment. 

Hoping we all have more good days than bad during treatment!

Chris

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am currently on active chemo.  I receive Doxil every four weeks.  Usually I have 2 weeks with days that I feel crummy and two weeks that I feel pretty good.  I have hand and foot syndrome from the Doxil and Neuropathy left over from the Taxol I was on before.  I am lucky that is only mild and usually only bothers me at night when my feet burn.  Fatigue sets in on about day 4 and goes away at the end of the two weeks.  During those first two weeks I have a variety of digestive issues, from acid reflux to constpation and diahrea..  This time around,I had a lotmore easy days until this weekend when everything went south.. Today i spent getting Hydrated, hoping that works, havent been able to eat or drink.

After 7 Doxil treatments I seem to be stable, more shrinking than growing.  i will have a new CT scan next week to see if that remains true.

I do have many more good days than bad.  The quality of life is still good.  I have learnd much from this experience and I have been blessed with great doctors who care, a wondeful loving husband and caring family and friends.

Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

I finally had a decent day for energy yesterday and a mostly normal stomach. Just in time to do it again!

Just got home from treatment. Stopped at Wendys for a Frostie as my reward. :-)

Didn't sleep well last night so managed to sleep for about half my time in the chair today. The rest of the time was spent eating off and on. I find that I mostly can't eat normal size meals any longer. I do eat about the same amount spread over an entire day. Only lost 1/2 pound so holding good on my weight. My blood counts dropped a bit more but still in a good range to continue weekly treatments.

Here's hoping for an extended amount of days before the crappy days hit!

Take Care,

Cindi

Double Whammy's picture
Double Whammy
Posts: 2834
Joined: Jun 2010

as you trudge through your treatments.  I did not have chemo for endo cancer (it was Type I), but I had it for breast cancer.  All I can say is arghhhhh, your side effects are all too familiar.

My best to all of you,

Suzanne

Cucu me
Posts: 214
Joined: Apr 2015

Have 2 more from total of 6 Carbo/Taxol.

Diagnosed in April this year. Had surgery in May.

Endometrial Adenocarcinoma Stage 4, grade 3 or 2.

My first chemo was the worst so far, the second was better and my Onco doctor told me, that the rest will be fine,not worse.

Side efects start on the second evening after treatment. Bone pain between knees and ankles mostly for 3-4 days, so I'm taking Tylenol every 4-6 hours.

The nausea I manage somehow. I don't have apetite, so I don't eat much.

When my legs get better start headache, insomnia and restless legs syndrom. The headache gets worse with each treatment.

After the 3th chemo the carrot juice helped me, but not after the 4th,

so I'm taking strong pill for the headache.

For week or 10 days after chemo I'm exremely tired. Some days I stay in bed, but most of the time I'm trying to be active.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

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

AWK
Posts: 364
Joined: Mar 2013

Your food changes are very similar to mine.  I started this journey, and continue it - as a very healthy person except for the cancer of course!  Decent diet but I also enjoyed my sweets - my weight was fine, not thin but okay.  On frontline chemo the thought of something sweet was nauseating.  I am still the same way now except for the occasional ice cream which seems to help with my constipation.  My taste has evolved to savory things and I crave apples, arugula and eat a lot of chicken.  Plus baked potatoes are the most constant.  

Sleep is an issue for me.  i used to really stress over it.  One of the things that I have heard consistently is sleep when you can, don't push yourself during the daytime but take naps if you are tired.  A few of my doctors recommended taking a benedryl for sleep at night which I would do if I needed to, then they prescribed a light dose of Attivan which I take only as needed.  I also have a cup of chamomile, mint and ginger tea before I go to bed which really helps.  

Some nights I get up, take my tea and sit outside looking at the stars and enjoying the quiet stillness.  I think about my space in this world and find it to be very peaceful for me.  My dogs usually accompany me.  Those are moments I find to be special and worthwhile.

sending hugs.  

 

Cucu me
Posts: 214
Joined: Apr 2015

Recently I try The breathing 4-7-8( find it in internet),reading, walking, eating or if anything Lorazepam.

Food taste: mine changed too. In my bad days I'm craving salty junk food and in my normal days - everything, but less sweet than ever.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I tried that also, but it made me anxious and I couldn't sleep at all! But, my daughter says it works for her. I do find reading before bed helps.  Sandy

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I am that rare bird who seldom has trouble falling asleep.  So far, the chemo has made only a little difference.  I am still able to sleep at least 5 or 6 hours straight and sometimes a little more.  A friend told me about 4-7-8 and I have tried it.  I find it relaxing, but I'm not sure it makes any difference.  On nights when I do have trouble falling asleep, I use a variation of counting sheep where I concentrate only on counting slowly and visualizing only the numbers (no sheep!).  Sounds weird, I know, but it usually works for me. 

Cucu me
Posts: 214
Joined: Apr 2015

some relaxing tea from the grocery store before going to bed. Worked for me before.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Thanks all for the feedback. Lots of great suggestions to try.

Just got back from my 6 week post hysto surgery check up. All looks good. Physical restrictions lifted. Yippee!

Now, if all goes like last week... I may have just enough time to vaccum before the fatigue sets in tomorrow afternoon. :-)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

This time was not as bad as # 2. I'm on my worst day today (if all goes like the first two).

Lower energy hit around 11 on day 2 post chemo day. And, I had some stomach cramps but not nearly as severe as last week.

Heavier fatigue hit today (day 3), still some stomach cramps but nothing major, some nausea (took a pill), some minor aches and a low grade headache. Mostly sleeping or laying on the couch. I don't have a lot of energy to do much else. No appetite today. But eating a little and drinking lots of fluids.

This cycle was easier to live with for sure.

Cucu me
Posts: 214
Joined: Apr 2015

the rest you have won't get worse.

Talking from experience and from what my oncologist and naturopatist told me.

Thumps up!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

So, I'm finding it easier to say I will be bald than actually taking action to make it happen.

I have fine, thin, straight hair. And, the fallout started about 4 days ago at a fairly rapid rate. I don't have bald spots yet but I'm not far from that point. And, dealing with the falling hair is on my last nerve. I have been pulling it back to contain it as much as possible. But, my scalp is bothered by the tension. Did any of you get something similar to "sore spots" ? Not really painful, just sensitive.

I took a giant step today by pulling it into a ponytail and whacking it off. Decided I would be the one to make it ugly before the chemo does it. Next step will be to have my husband shave it. I'm still working on myself for that step!

Here's a question: How long after any of you started losing your hair did you have to shave it?

I hope you are all having a nice holiday weekend.

Cindi

AWK
Posts: 364
Joined: Mar 2013

I had pain in my scalp, especially on my pillow at night.  I was told this is the follicles effectively dying in your scalp.  originally my hair came out very gently, no clumps.  About a week later it started in clumps and I shaved it pretty quickly right after.  This time around it was again coming out just leaving a fine layer on my pillow and in my hands.  I had the scalp pain again.  My stylist cut it into a pixie about two weeks ago and while I am losing some no clumps and no patches.  When that starts I will shave it all off again Although there is a chance that my hair will stay thinner like it is.  I had very thick, wavy hair before I started my chemo journey, it started to grow back in about a month after I finished frontline and came in extra thi k and very curly.  I didn't lose any during Doxil nor Avastin.  The great thing is losing your body hair!  I haven't shaved my underamrs in two weeks and about the same for my legs. The tough part for me was losing my eyebrows and eyelashes which is happening this time around.  

Sending hugs!  Anne

ConnieSW
Posts: 1569
Joined: Jun 2012

I never shaved mine.  The women who fitted me for a wig told me not to but I've forgotten why.  Luckily my scalp wasn't sensitive.  My hair was short so I just combed it several times a day and that kept things from getting messy- kinda like grooming your dog when it's shedding.  Like AWK I minded losing my lashes and brows the most.  my wig looked better than my own hair.  Oddly enough, I found very short hair is flattering to me and I still wear it that way.  Without chemo I would never have know.  There's a silver lining to everything.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Thanks Anne and Connie for the replies.

I gave myself the gift of lazor hair removal years ago. So, I just have a few stragglers here and there on my legs and underarms. :-)

Now, if it would get rid of the darn chin hairs, GREAT!

I still have my eyebrows. But, my eyelashes are getting thin. It is an adventure finding them to put mascara on. I agree, I think losing the eyebrows and lashes will be harder. Makeup will be a must!

I put one of my head wraps on this evening to keep my hair from falling into my food while cooking dinner. Plus, it gave me a chance to think about the after hair look.  Just another milestone to get me closer to the end of this chemo journey. Not sure about a wig, Connie. Living in Florida with the humidity may be a bit much. Especially adding hot flashes into the mix. I have this visual of being in a store, having a hot flash and ripping it off my head! lol

ConnieSW
Posts: 1569
Joined: Jun 2012

Yep, don't think I could manage that in Florida during the summer.  I managed to hang onto my eyebrows till till the 4 th chemo.  Never fear, the chin hairs will go....then return.   I tried lazer for them but they always return.  Darn stubborn.

mary8237
Posts: 4
Joined: Sep 2015

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.

Rjchirp
Posts: 3
Joined: Apr 2015

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. 

mary8237
Posts: 4
Joined: Sep 2015

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? 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2897
Joined: Mar 2013

miss mary, I see you haven't been on for a little while, so I do hope you come back.  

I worked throughtout all my treatment.  Of course, chemo was an all day thing, so I had to take off on those days.  

Doctors will tell you treatment is ALWAYS your option.  However, I don't think anyone with UPSC has been told by their gyn/oncs that observation its he route to go.  It is always your decision, my radiologist could tell you I really pushed back on getting that, but in the end I decided to do it.

Please let us know how you are doing.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Hi Mary, Sorry you have to join this cancer journey with us. But, you have come to the right place for support and answers.

I am the only one that I know of that is on weekly treatments rather than the every 3 week timeline. Still on the fence which way is better. At this point I'm leaning towards the every 3 weeks because it seems like there is a longer "better days" window between treatments.

My hair started falling out at day 16 post my first treatment. Tomorrow will be day 21 and is my next treatment. I will be taking that next step today to go bald.

I have a port. I did have post surgery pain that took about 2 or so weeks to resolve. However, after watching other patients without a port getting stuck many times to find a good vein,  I know I made the right decision to get one. It was placed in the hospital under anesthesia.

You can do this Mary. Not going to lie, it isn't easy but it is doable. Lots of ladies on this site continued to work during treatment. I was lucky to have retired January of this year. So, I can't give you first hand experience on working during treatment.

Ask any questions. Someone will have the experience to answer you.

Cindi

AWK
Posts: 364
Joined: Mar 2013

I took a short term disability leave during frontline (first type) chemo, returned to work and worked through 19 months of other treatments which took place every three weeks.  if your company has an HR deptment you should speak with them.  You can take FMLA leave which will protect your job while you are out for up twelve weeks. My company provides full pay for that same period through a combination of short term disability from the state and company offset.  All of my benefits remain intact.  The other thing that I was urged to do was register as a Disabled individual under the ADA act.  This benefits both you and your company if it is of a certain size.  In my case I was allowed to work from home after treatments which was a huge help.  Confidentiality is attached to this although I ended up telling people I was still going through treatment.  I work with a team and my team needed to understand how to reach me etc.  it worked out well.  

The most important thing is to be gentle with yourself.  You can do this no matter what.  Hugs - Anne

mary8237
Posts: 4
Joined: Sep 2015

Anne,Thanks for your support and information. I work in a small Rural Health Clinic,(8 employees) and unfortunately do not have the benefits of a large organization. I was staged at 1B, I am looking at all options including observation. This site has been very helpful and comforting. 

Thank You

AWK
Posts: 364
Joined: Mar 2013

My boss worked the whole way through her frontline.  I will get some more info from her on how she managed it.  

AWK
Posts: 364
Joined: Mar 2013

She worked through because her husband had lost his job and she was concerned about needing the time off if her cancer progressed and wanted to save it.  When we get chemo we get a steroid with it to help with side effects.  Because of that most of us get a steroid bounce and feel pretty good the day after treatment.  She had hers on a Wednesday afternoon and did paperwork duReing the treatment.  Felt pretty good to work Thursday and Friday until the afternoon then slept most of the weekend.  She had six rounds one every three weeks like most of us.  She recommended looking at how your workweek flows and see if you have a lighter day in the week for day three or four after chemo.  She kept a written planner to keep track of things and kept herself on a sleeping routine.  Took a nap after work.  She, like most of us, nibbled through the day and stayed on top of exercise by taking daily walks.  Stay hydrated.  I use her tips currently and during my second and third lines of treatment when I worked too.  My work from hime days were usually the lightest work day for me - didn't need to see clients etc and I arranged calls from home - but I understand your job is very different.  

I wish you much health ahead and will keep you in my prayers.  Hugs  - Anne

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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

 

Cucu me
Posts: 214
Joined: Apr 2015

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.

mary8237
Posts: 4
Joined: Sep 2015

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?

 

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2897
Joined: Mar 2013

mary, I am sorry you have had to find us, but you will get answers to the questions here that others can't give you. 

I did NOT want to lose my hair but about 10-14 days after the first chemo I noticed it really started to come out :(  I stood outside and kind of shook my hand in my hair and it would drift off in to the wind where I hoped the birds would gather it to help make their nests. 

I worked throughout.  I was out 2 weeks for surgery (Da Vinci) and then came back part time for about a week.  I worked throughout chemo and radiation, only taking the day off for chemo since it was an all day process. 

Everyone is different, so I was lucky to be able to work as I did, but there are other reasons as well.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Done!  I gave my husband full control. He shaved just one side first similar to the kids style with the rest flipped to the other side. Let's just say not a good look for a 58 year old. Actually, not a good look period! :-) Next a mohawk. My pitiful hair wouldn't stand up even short. Oh well. OK, then I took a swipe out of the middle of the mohawk. By this time the cape was  hot and I was ready to be done. So, off came the rest. I had worked on my attitude for several days so this really became a non-event for me. I am walking around the house without a cover. My husband laughs at me and gives me lots of hugs. We are both good.

I'm going for a swim when the sun is off the pool. No hair worries for some months to come.  woo hoo!

Passing by a mirror is still quite shocking. Who is that woman?!

AWK
Posts: 364
Joined: Mar 2013

i am right behind ya sistuh!  it is amazing how fast the showers are!  

ConnieSW
Posts: 1569
Joined: Jun 2012

Attitude will get you where you need to go.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

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
Posts: 1569
Joined: Jun 2012

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.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

But- you came to the right place. I lost my hair early at the start of chemo and basically it all fell out within a few days. I cut my hair short when the hair loss process started. I never shaved my head and I read somewhere that it was not recommended. I lost my eyebrows and eyelashes after chemo #5. Ouch, that was difficult to handle because I thought I looked ill. My scalp hurt when the hair was falling out. I received a port at the hospital. It was outpatient surgery. A port is a MUST so that the veins in your arm are not burned. Believe it or not- adjuvant chemotherapy finally will end, your hair will start growing back about a month later and life will return to a more normal state. My hair came back quite curly but is now beginning to be less so (1.5 years after chemo ended). Before I started chemo , I visited the local American Cancer Society office and was treated like a queen! I selected two wigs that I wore faithfully. They were free! ACS offers other wonderful services, too! Check it out- it was a much needed support to me that was offered  at one of the lowest moments of my life. I will always be grateful for that!

Warm Wishes,

Cathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2897
Joined: Mar 2013

Cathy, I am SO glad to hear you got wigs from the ACS!  I had good insurance that allowed me to purchase them and donated them when I was done with treatment.  That was huge because it meant I was moving on.  I hoped they would go to some other lady who needed a perk and now I know they probably did.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Hi Connie,

I haven't been there. I'll check that out. The quilted scarf sounds interesting.

I have ordered all of my things from headcovers.com.  The models all show covering their ears.  That is not comfortable for me. So, I am putting it behind my ears even though that does give a hint to my baldness.

Winters in Florida don't get cold very often.  So, I probably won't be able to wear a knit cap. Thanks for the offer.

Even bald, I still sleep with an overhead fan and then one that blows directly on my head. With the AC running. Darn hot flashes! :-)

Thanks,

Cindi

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

This was the part I hated the most.  But as soon as it started coming off in chunks in my hand, I had my husband shave it off.  My daughter had already taken the lead in getting me hooked up with a vendor who only worked with women suffering from alopecia and chemo hair loss, so I had a wig ready to go as well as scarves and other head coverings.  The funny part?  Everyone liked my wigs better than my hair!!  Got a little scary as I wasn't sure anyone would like me in just my natural hair anymore.  But surprise, surprise...I have had blonde straight hair my whole life that I kept styled to the max.  My hair came back in black, white, and curly!  The curl relaxed over time but not the color and everyone loves it!!

pinky104
Posts: 574
Joined: Feb 2013

I had a girl approach me at the hospital where I worked and say to me "I like what you've done to your hair."  I had tried to match my natural color with my wig, but the wig I ordered came out quite a bit lighter in color.  When I explained to her why my hair looked different, she looked mortified.  I used to work with a girl who came down with Hodkin's Lymphoma.  She went to a hospital Christmas party after her hair had fallen out in chunks during treatment.  Another party guest said to her "I like your funky hair."  I couldn't imagine how anyone could compliment her on what was left.  She dealt with it fairly well.

I had a friend who lost her hair due to chemo for breast cancer.  She had been a straight- haired blonde also, and ended up with brown curly hair after chemo.  Like yours, her curls straightened out.  She now dyes her hair blonde and still looks like she's in her 20's although she has to be close to 50.

I had expected to just lose the hair on my head but hadn't thought of all the other places I'd lose it.  I've even lost a little bit of my hearing due to losing the hairs in my ears that respond to sound.  I wonder how many others have had that happen.   

  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Pinky, I don't think I have lost the hair inside my ears yet. But, something that I am experiencing is a sharp pain in my left ear for a few days after each weekly chemo treatment. It is not constant, just a quick pain a few times a day. I get other strange sharp pains like that on other parts of my body too.  Like my teeth. And, around my port and the associated shoulder.

Anyone else get this?

Thanks,

Cindi

AWK
Posts: 364
Joined: Mar 2013

I get pain in the shoulder where my port is for a day or two post chemo.  The other thing is my gums retract for a day or two also which freaks me out, then it all goes back to normal.  -Anne

ConnieSW
Posts: 1569
Joined: Jun 2012

But you lose your nose hairs which means you lose their function.  I won't be more graphic.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

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!

Double Whammy's picture
Double Whammy
Posts: 2834
Joined: Jun 2010

I wear wigs because my hair did not all come back after chemotherapy for breast cancer (it is a known but rare side effect of Taxotere).  I look like the crypt keeper with less hair.  I do not find wigs hot and my theory is that it's because there's no hair underneath to "insulate" and trap the heat.   I shave what hair I have.  I shave it for 2 reasons:   the wigs fit better and stay in place better and frankly I'd rather have it gone than look at what I have.  Its' absolutely useless.

My other comment about wigs is there are some good yet inexpensive wigs available.  Wigs often look wiggy because they simply have too much hair.  A good hairdresser can thin them for you.  I have this done to almost every wig I get.  I now order them online because I know what colors, styles, and brands work for me.  My wigs look better than the hair most of my friends , but of course, I would prefer to have a full head of hair again.  Not gonna happen, so you make the best with what's available.  For me, that's wigs.

I did not wear wigs during my chemotherapy.  I am also retired and don't know what I would have done if I had to got to work.  I was not at all ashamed of having cancer and did not have to worry about losing a job or being targeted at work when ill,  so I did not feel the need to try and look well.    I had beautiful scarves and headcovers (still do and I wear them a lot instead of a wig).  These are my two favorite sites for scarves:  4women.com and  turbandva.com.  They make wonderful gifts, if someone wants to get you something.  Both are a little pricey for a temporary situation, but since mine turned out not to be temporary, I treat myself to a new one as a "fashion statement"now and then.  Most of the hat type covers I got were from headcovers.com, but for scarves, these really can't be beat - because you don't have to tie them and they're really beautiful. 

That's my comments about wigs and headcovers.  Hope it helps someone (I also have no eyebrows and very few lashes - permanent makeup!  Some get that done before starting chemo, but be sure to check with your oncologist - it's tatoos afterall, and the liner hurts).

Suzanne

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