Side effects from Chemotherapy for my OC

[Dinny56]

Greetings. I have just completed my first round of chemotherapy on June 19th. Taxol and Carboplatin were the drugs of choice. I have been told that my hair will fall out on Day 14. It is now Day 12. Nothing has happened. Is it inevitable that I will have hair loss and how, really, will it present itself? It has been described to me as a sudden tingling in the scalp and then it will 'happen.' It seems a little surreal to me. Also, can I drive if I am on these anticancer drugs? Or am I considered 'impaired' in some way, state or form? Thank you for taking the time to answer my questions.

[jlock]

I loved all your comments and really can't add too much more than what has be written.  I too had my head shaved as soon as I started to see I was shedding.  It was very emotional for me,but I felt that letting it fall out little by little was just asking for emotional trama!!! I think the thing that bothered me so much was that once I lost my hair I finally looked like a cancer patient...I was so sick with chemo. Also I felt like I had to do something since the ovca was ruling my life in so many ways. I did buy a wig,but they are hot and itchy(I live in FL) I turned to bandanas and I had so many..all in different colors.  I loved the glueing the hair back on,that really gave me a chuckle!!!!   I also looked forward to when my hair did start to come back,it had a lot more gray..but it was curly!!!  I really loved it. I have only lost my hair once,when I was on carbo/taxol.  since then I have been on Doxil,Gemzar and Topotecan and my hair did just fine.  It thinned a bit,but nothing anyone but I noticed.  As far a chemos becoming worse..if i recall correctly my 3rd and 4th cycles were the worse and then they got a bit better.  Hope you all have better hair and chemo days ahead for all..(((hugz)))~~~Joanne

[crecco]

Glynis,
   Yes when your hair begins to fall out it is so traumatic. My began falling out on the 12th day. I went into the bathroom that morning and was going to dampen a few strays that were sticking up and when my hand came away, it was covered with hair. I went outside and sat down and had myself a good long cry, came in and asked my son to get a pair of shears and shave it off. For me just getting rid of it all at once was easier than watching it come out clump at a time. Of course my son played around and "payed" me back for all of the haircuts I gave him when he was younger. It took me two weeks before I got the nerve to look in the mirror.
I also got a wig but have never worn it. In the winter I wore sock hats and in the summer, bandanas. I have the hugest collection of hats and bandanas as I want something that matches whatever I wear. I recently (in Feb) lost my hair for the second time and I don't think it was any easier the second time than it was the first. I still have never worn my wig, but boy have I added to my bandana collection!
Like you, both times I caught myself constantly checking my hair (ie. pulling lightly on it to see if it was still attached) As hard as it is, I have found it to be somewhat a different experience. Taking a hot shower feels so good when it hits your head, plus you save tons on shampoo. Also when I have hot flashes, pulling that scarf off feels great too. And nothing beats going to bed at night and laying your head on a cool clean pillowcase. Or being outside when the wind is blowing!  As much as I want my full head of hair back, those are things that I am glad I got the chance to experience.
  Please know that I wish you trhe best of luck on this journey you are on.
       Chris

[bohan54]

I bought a wig and cute head scarf along with some soothing gel for my head from a speciality store operated by a breast cancer survivor and retired oncology nurse.  Also have a nice buzz cut, first chemo is 7/16, am I a type A pro-active nut or what???!!

[butterflytc]

It is amazing how we all got so upset about losing our hair, even tho we all know it grows back..I think it is easier to focus our sadness on the hair, rather then the cancer itself. Glynis, allow yourself to be sad, and yes let it go..You need all your positive energy flowing against the bigger beast. I know I cried when mine fell out, so whether it is normal or not I don't care, I was sad, I cried, and I got on with it. I wish you all the best
butterflytc

[Teresa222]

I'm sorry you are losing your hair now.  Yes, it is amazing that our hair begins falling out the same number of days after the first chemo.  I started out trying to wear hats that covered my whole head.  I looked like an idiot.  I changed to plain old baseball caps and it looked much better. (according to my husband and my daughter)  One day alone while wearing a hat trying to cover my whole head, I had three people come up to me in stores and began having conversations about THEIR cancer. In other words, they knew.  We get "the look".  Our skin tones change and we just look weak after a while.

I wanted to tell you that I was in actual pain as my fell out.  So, don't be surprised if it is not just a little uncomfortable.  I did not get upset about losing it.  When I accepted having cancer, I went ahead and accepted it all.  I don't like it, but I accept it. I just got sick and tired of hats.

I hope all your chemo's are as easy on you as your first one. My first one was tough on me. Therefore, you may be blessed in the side effects area. That would be very good.
Teresa

[Dinny56]

Hey Everyone. I am feeling a little whiny and weepy right now. My first tufts of hair are beginning to fall. Like butterflytc, my head is really getting sore and it almost feels like it is being squeezed. Is that normal? It's not really a headache, but more a tight feeling. I find it absolutely amazing though that this is happening on the 14th day, just as I was told at the cancer clinic. I am afraid that I am going to wake up with all my hair on my pillow tomorrow. I think I will have one good cry (and maybe one big frantic scream) and then get on with it. Most of the time I try to have a sense of humor about my hair, but there are still emotions that I have not let loose yet. Thank goodness we live in the country!  Yes, Jan, I think I will be like you and not wear a wig. I have some neat hats I have picked up. We'll see. Right now I do not want to go anywhere, but hopefully I will soon break out of this self-imposed prison! Prayers and Hugs to you all. Glynis

[butterflytc]

P.S now make up that TShirt that says
"I paid my oncologist a lot of money for this haircut"
keep smilin'
butterflytc

[butterflytc]

woohoo Jan, bald is beautiful! keep up the spirit
stay well
butterflytc

[pommie_jan]

Hi Kathy, butterflytc
Thanks for the advice, but I did bite the bullet and had my husband shave my head, I must admit though, I did have a few tears when I saw myself in the mirror, but am fine now..
Ive decided not to wear a wig, but bought a hat/cap, its still pretty obvious that I dont have any hair, but I thought so what !!, I went to the shopping plaza yesterday, and didnt feel as half uncomfortable as I thought I would.. hooray ! another hurdle over and done with..

Thanks again guys...
Jan x

[butterflytc]

I agree with Kathy, I did not want to shave my head, like others I thought I would never lose my thick head of hair..I waited and my scalp literaly hurt, but when it started to fall out, it fell out fast. I did not wear a wig, just bandana's, and then only if people were around, as I felt much better without it. To this day I still rub my head, just because I can.
I wish you good luck
butterflytc

[Kathy70]

Bite the bullet and shave it!!!  I think theres something to say about taking matters in your own hands.  Dont let the cancer take it.....you take it!!!!

Good Luck!
Kathy

[pommie_jan]

Hi Jeanne
My husband and I had a really good laugh about you glueing your hair on, how funny, I wouldnt have had the creative thinking or the guts to do that....

I am just debating whether to have a shower and let my hair just fall out, or just to bite the bullet and get my husband to shave my head, as I only have to give it a slight pull and it comes out in bunches... oh the dilemma !!!... I guess Im trying to hold onto it for as long as I can....

Take care everyone, have a great day...
Jan x

[momofsandj]

I never had tingling -- I just woke up with hair all over my pillow --- the first time i went through it my hair grew back better -- the second time (first recurrence) it grew back patchy and now second recurrence the Doxil had it thin but still there -- unfortunately i kept the hair and the cancer -- any way --- funny story was the second time I thought I could wear my wig from the first time but my color changed so much I realized it wouldn't work at all -- so I glued my hair to my head with hairspray and went to work that way until my new wig came in -- you gotta laugh -- I literally glued it with hair spray -- didn't wash it and slept sitting up until the wig came in -- not necessary if you aren't going to work but what a hoot --- as long as I didn't touch it it stayed on my head -- -the wig came in, I took a shower and boom I was as bald as an egg (and my drain was really hairy) --- the part no one tells you about that is really icky is the loss of pubic hair and eyelashes and eyebrows -- get a good eyebrow pencil that is your color before the eyebrows go -- again, the silver lining is that you won't have to shave your legs for a while --not trying to be a wise guy, just trying to cheer you up ---
I had no idea how traumatic it was loosing my hair the first time until it happened -- don't worry, it will grow back
Good luck with your treatments -- and by the way, you can drive as long as you don't feel in control of your reflexes -- you don't want to hurt you or anyone else -- if your hemoglobin really gets low, don't drive because you get sluggish and it isn't safe
Jeanne

[Dinny56]

Well day 14 is here for me and so far I still have my hair. I can't believe it just suddenly happens. That seems so odd but I guess I will brace myself for the 'big tingle.' Yes, Jan, the constipation has been the worst for me but now I seem to be okay as long as I take the Colace and Senokot tabs daily. I, too, had that parasthesia in my legs and feet, but it really didn't seem to last. I have to have 6 cycles so my next one is July 10th - next Thursday. Yes, it's interesting to see all the similiarities of symptoms - fairly predictable I suppose in many cases. I like the GI Jane comparison, Kathy. I'm in a holding pattern right now until I know then I will see if I can assume that strong persona! Has anybody NOT lost their hair during chemo does anyone know? I am hoping. :):)  I keep checking my hair and it seems still 'well anchored.' Does it just 'let loose' .  Gosh...I must sound like a neurotic, vain thing. I guess once this happens, I can move on and then deal with it. Have a wonderful day, ladies and thanks for sharing and listening. Do you all have lots of support at home or is it hard for those around you to understand? I guess everyone  eventually gets used to it and the cancer diagnosis is not as shocking, huh? So many things to think about. Blessings to you all. Glynis

[pommie_jan]

Hi All
Thank you all for relaying your experiences, I am quite scared now about having my subsequent rounds of chemo, I thought Id got away with it tooooo lightly...
My surgeon said that I needed 6 cycles of chemo, but when I went to the hospital to have the chemo, they said I only needed 4... I let them know that I was worried about this, so not sure if Im having 4 or 6... my 2nd round is due next tuesday (providing my blood count is ok on friday)..
I too suffered with constipation and found that I had to take Coloyxl with senna tablets to relieve it, I know they say that chemo affects everyone differently, but reading all your comments, there is alot of similar experiences going on... my head is still quite sore to touch this morning, Im scared to have a shower incase my hair falls out in 'big gobs' (to quote Jan).. although I know it is starting to come out.
Manneca, good luck with your last round of chemo, I wished it were me..
One of the worst side effects I have had is, around the 3-6day mark, my feet and ankles really ached to the point of being painful, I couldnt sleep properly for 3nights, then decided to take some pain killers and had a decent nights sleep.
Glynis how many chemo cycles do you have to have? and yes, its really helping me being able to communicate with you all, and really feel like people on the other side of the world really care, and offer so much support, thank you..
Jan x

[Kathy70]

I just had my 2nd round on Friday, and I felt much better this time than the 1st.  I've heard from the women who get treated the same day I do, that it gets worse as you go......ugh!
I still have some hair!  It was coming out around day 14 so I buzzed it & LOVED the new do!!  Everyone said I looked like Demi Moore in GI JANE!!!  But now thats its thinned out so much I must wear the wig/hat/scarf......oh well, I have heard that it comes in thicker/culier....I'm excited to see what I get!!!

Take care.......reading all these posts keeps me sane!  

[manneca]

The second round seemed pretty good for me, the third round not so good. I'm much more tired. And listen to whoever suggested Miralax. I was so constipated after the second round I thought I was going to have to go to the hospital. I started taking senocot (recommended by by cancer center) after the third round and was still constipated. Wound up taking miralax and senocot. My pcp recommended that I start taking miralax the night before my chemo and take a dose in the morning and in the evening. (I keep getting from the cancer center: most people get diarrhea)

But I have my final round (God willing) on Thursday.

[LizT06]

I finished chemo about 3 months ago.  I also cried more when the hair fell out - around day 14 - than when I was told I had Stage IIC endometroid ovarian cancer.  I never had head tingling.  I showered and when I went to brush it out - it started coming out in clumps.  I had it buzzed that day.  It is now a little over an inch long and some people now think it is my hair do of choice.  I admit that it is easy to deal with especially in the summer but I still want more length!

I also had IV/IP chemo with Taxol and Cisplatin.  I thought the first round was too easy too.  It did get harder after the second round.  The fourth and sixth round seemed the worst.  But - I can't believe how good I feel now - except for some minor neuropathy.  

[Dinny56]

Hi Pommie_jan & All. I am wondering exactly the same thing. I, too, wasn't too bad after the 1st chemotherapy treatment other than fatigue for the first few days. I have had a few minor issues with constipation and a little tingling in my fingers but now, on my fourteenth day, I seem to be okay. I cannot say I even feel any tingling in the scalp. But, yes, I too wondered if the symptoms get worse as the treatments continue. How many treatments do you need, Pommie_Jan? Isn't this a great way to 'vent?' Regards and Blessings to everyone and for your collective journies. Glynis

[pommie_jan]

Hi Dinny56
I to have just had my 1st round of Carbo/Taxol, after being diagnosed with endometrial cancer, (apparently I have a hybrid type, normally found in the ovaries), this is day 14 for me and I have had a sore/tingly head for a few days now, but I thought it was due to my pillow (Ive only been sleeping on this pillow for years, wonder how I thought that?)..
Well, this morning I noticed that my hair has just started to come out, if I wake up tomorrow with hair on my pillow, I am getting my husband to shave it all off.. not sure if Im going to go 'Au naturelle' or don a headscarfe.. could one of you lovely women please answer this for me, does the chemo treatment get worse the 2nd/3rd etc time around, as this 1st cycle was quite easy to cope with, I kept saying to my husband, 'I wonder if the hospital have given me the correct dose' as I havent had much in the way of side effects....I am really afraid that the chemo is cumulative...
Thanks in anticipation....
Pommie_jan

[dustinsmom2004]

I lost my hair in little clumps that were barely noticable, then one day I had various bald spots in different areas of my head, then it was gone and I resorted to various wigs. Long straight hair one day and short curly hair the next. I felt an uncomfortable tingling sensation. Looking back I should have shaved my head before this happened, I thought that I would be lucky and I would keep my hair. I too, think I was more traumatized by my hair loss than by the cancer diagnoses itself.

[Dinny56]

You are so funny. I love (and need) to laugh. Thanks for putting a big ol' smile on my face.  My hubby just about fell off the chair with your Mr. Clean comment. :)  I think I am going to like this group - the one no one wants to join! Smiles, Glynis

[Jan214]

You have stumbled onto a great site.  As Teresa (?) said, I think all of us with cancer have had the carbo/taxol as it is pretty standard for first treatments.  

I cried more over my hair than having cancer. I don't think I even cried about that.  My scalp started to hurt and it came out in small strands here and there.  It was a little more each day.  At one point I had a small bald spot but the rest was still really long.  The next day when I bent over in the shower to run the condition through my hair, HUGE gobs of hair came out in my hands.  I crumbled to the floor in tears with that shower running over me and I don't know now how long I sat and cried like that in the shower.  Cory found me that way hours later.  HOWEVER, I found there were advantages and I learned a few things.  You can get dressed and out of the house really quick when you don't have to do your hair or shave anything.  It was my hair that made me look stupid in hats but without hair I look smashing. (I'll put my pic back up just for you). The cost of hair products, salon visits and razor blades could go to something else. You don't get to many chances to start your head over baby butt bald; without dyes or chemicals or the stuff the toxins in the air do to it.  My hair came back quickly after the carbo/taxol,  and it was bozo curly and no grey hair at all, but is sort of in a holding pattern now with these last chemos I have had to do.  That's okay, cause with longer hair I would have to give up my hats and I LOVE them. Please do look at my photos.  I have a "Hat Garden".

You are in surreal mode now, but you will come out of the twilight zonishness of it soon, although that can come & go too.  Let us know how things are going and remember you are NEVER alone with this.  We are ALL here for you.
Jan

[Dinny56]

Thanks, ladies. So, it seems, we are all different and I will just have to wait and see! Gosh, there is encouragement in numbers. Blessings Glynis