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KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Well I was all set to start my radiation next week on the 7th. I felt I was pretty prepared for all I had in store thanks to you guys! Well out of the blue they called me Monday to come in on Tuesday to talk with a different Oncologist. So I go and of course my mother tags along. The board of Oncologists decided it would be in my favor to also do Chemo :( 3 bouts of Cisplatin. They said I will definitely lose my hair, which I know is a small price to pay in return for a healthier life, but I can't say I'm not bummed, majorly. I stayed my optimistic self through the appointment, despite my mom being in tears. She just couldn't hold them back! Then the American Cancer Society lady came in with some wigs to try on, it kinda hit me a bit then, but I was still all smiles. Last night I went to bed at about 10:30 and woke up at 1:30 to feed my baby and like a ton of bricks it fell on me. I could not sleep at all last night. It's just so freakin unfair ya kno? I KNOW that I'm lucky to be receiving treatment and that in the end it will be great! I am gonna freak when my hair starts falling out though. Just wanted to share I guess. Anyone have any stories from when their hair started falling out?

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Hi Kristyn

I had the eight weeks of radiation with three rounds of Cisplatin for base of tongue cancer with mets to lymph nodes on both sides. So, they gave me pretty high dose Cisplatin (100 ml/m3 or however it is expressed). They told me my hair would fall out. It didn't. Look up Cisplatin on line. Hair loss is not one of the big side effects of this chemo.

I didn't lose my hair. For a lot of folks here, they didn't lose their hair either, with Cisplatin. My hair did thin out some. It got really brittle and dry, and I would see a lot of it in the drain when I showered. I decided to hold off on buying a wig till it appeared I would need one and I never did. I did cut my hair short, because it wasn't so pretty, and it was easier to care for, and it seemed to look less thin when short. Never got any bald spots. Never had scalp show through.

Radiation to your throat and neck will cause the infamous "radiation bands" of hair loss at the back of your neck. It makes your hairline higher in the back. I was told that hair lost to radiation would never come back, but mine seems to be.

I am three months out, and it really took about ten weeks before my hair started growing back in. I just had my hairdresser cut off all the old dead treatment hair. I ended up with a brush cut that is almost as short as Demi Moore's in G.I. Jane. Just wear big dangly earrings and you can pull it off.

Don't freak out because you have to have chemo. It is one additional step to make sure that the cancer has not and WILL NOT spread further in your body. The anti-nausea meds available now WILL keep you from puking your guts out. I felt lousy for a week after each round, and I needed to take my anti-nausea meds for about six days after each treatment, but I swear, I never puked even once. Didn't even feel nauseated. Ate less. Lost a few pounds. Laid around and read or napped. Lived through it.

Hang in there, you strong, brave woman, you! You CAN do this! You will come out the other end, and you will pick up your life where you left it off, and go on!

Deb

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I just had my three-month PET-CT. ALL the cancer is gone. My Stanford Doc says there is a greater than 95% chance that the cancer will NEVER come back. It was SO worth it. You WILL get to live the rest of your life.

Deb

Noellesmom
Posts: 1302
Joined: Aug 2010

See my comment below.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

High five!

Best,

Mick

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

I start my Chemo and Radiation in about 8-10 days. I was told pretty much the same thing. Not really any issue with hair loss regarding the Cisplatin. My Chemo Doc has said these days the expectation is NO VOMITING. I will have access to the best anti nausea medicines on the market. I think the Radiation I will receive to both sides of my neck will yield the more severe side effects. I have always shaved my head and wore a goatee. I was told that if I keep the goatee, parts of it may not grow back if the radiation is close to it.

I decided to go for "the big guns" as far as treatment is concerned. Surgery which i alreday had, bilateral neck radiation and chemo. I have my attitude as a small short term price to pay for a long term of healthy living. I also have my self prepared menatally to have the worst case scenario with the side effects. I figure if it is actually not as bad as I thought, that is just a bonus.

"live long and healthy regarding of the short term price to be paid" live to see your beautifull daughter graduate highschool, get married and start a family. Your mom gets to be a grandma and receive all of the happiness associated with it. I know it hurts to see your mom cry about what you are going through. It is perfecly normal, she is a mom and you are her baby. I have been through it with my mom and mother in law, it killed me to see it, but I know they care very much for me.

BE STRON AND POSITIVE, YOU WILL MAKE IT THROUGH THIS!!!

BEST!!

Mike

fisrpotpe's picture
fisrpotpe
Posts: 1337
Joined: Aug 2010

I did not loose my hair, even after a couple doctors and nurse's all told me I would. I sure hope you do not loose yours.

Stay Positive.

Noellesmom
Posts: 1302
Joined: Aug 2010

Although I know it seems a small price to pay, hair loss was NOT a side effect of the Cisplatin for my husband. Per his oncologist, Jim received the biggest doses they give. He also had seven weeks of radiation.
Not sure why your doctors/nurses told you that, KristynRuth, unless they are trying to prepare you for all possibilities, including hair loss.

I will say that after the birth of each of my children I had hair loss - really, it was more that my hair got thicker while pregnant and went back to normal after their births.

I think that's more a possibility for you - but the bonus is, you've got a baby to hold!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I got big doses of Cisplatin during my induction chemo phase, and then had weekly carboplatin with my radiation. My doctor let me know in no uncertain terms that I would lose my hair, and it would be the chemo drug taxotere that I would have to thank. It was the only drug of the three I was on that he said would do it. I was told that the others may cause thinning or weakening, but it wouldn't matter, since my hair was going to fall out. For the record, I did not go completely bald - I had to shave my head, because the patchy look was really creepy - bald looked better. I thought going bald would devastate me - wrong - it turned out to be just another thing - it bugged me sometimes, but nothing like I'd anticipated. Also, hot showers, vigorous brushing, drying and washing encourage breakage and fallout. I had worn my hair very long for years, and now it's short (and thicker, and grayer) and looks better this way (OK, except the gray part). I got my hair cut in a bob before it started coming out, because I couldn't bear the thought of loong hairs falling out all over the place. I still have my radiation bald patch, 5.5 months past treatment - it goes from ear to ear, mid-ear and down. I have a few hairs there, but it's basically bald. Soon, though, my other hair will be long enough to cover it.

So, hopefully, you won't need the ACS's wig. BUT they offer another service I'd highly recommend. Look good, feel better. Here, they do sessions at hospitals, ACS office, and cancer centers. They give you a bag of beauty and makeup items sorted by skin type. Everyone sits around a table, and gets makeup tips while getting made up, or making themselves up. It's nice, because not only do you get free (some pricey department store items - donated by manufacturers) goodies, you get lots of helpful hints on makeup in general, as well as specific tips for cancer patients while everyone chats (working around rashes, under-eye circles, patchy eyebrows, etc.). It gave me a boost (even though we discovered after I'd already mascara'd one eye that I had lost lots of hairs around the other eye, so actually needed to not use mascara for a while - oh, well - I got a laugh). Phew, now that you've read this post, you probably need a nap.

And, if you do lose your hair, and you do feel sorry for yourself - you got a right.

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

KristynRuth,
Sorry you are starting to feel the stress of this terrible process.

I had seven rounds of Cisplatin, every monday, during my seven weeks of radiation. I did not lose my hair from the chemo. It may have thinned a tiny bit...maybe.

I did lose some due to radiation on the back of my neck at the collar line. It has grown back.

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

You can do it....Cisplatin isn't as bad (long term) as the radiation anyways in my opinion.

I did lose my hair, but I was also having nine weeks of it (three week cycles) in addition to Taxotere and 5FU, then an added seven weeks of weekly Carboplatin during the daily head shots of radiation.

You're a fighter and can handle it, it's nothing but a thing girl....

Some of the main things with Cisplatin to be aware of are tinnitus, neuropathy and stay hydrated.

Best,
John

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Wow!! I feel 100% better already!! The doctor had me terrified! I guess they have to give you the worst case scenario, because he told me I would DEFINITELY lose my hair, and that I would be violently naucious! At least now I know there is a good possibly I will be just fine!! Once again y'all have eased my fears lol

Thank you so much Pam, I hope the ACS has something like that at the hospital I'm at, that sounds really nice!

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

If they don't offer you several kinds of anti-nausea meds, DEMAND THEM!

I got three kinds of meds via I.V. just before I was treated each day (emend, aloxi and decadron). I took Emend as pills, before treatments. I took pills afterwards (zofran, compazine for breakthrough nausea, and ativan for extreme nausea). I took them for a full wseek. Ask for these.

Deb

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

Ms. Lewis, you are giving out millions of dollars worth of advice through the personal experiences of all of us. Your ability to "lay it on the line" is truly admirable, and I wish I could remember all the trivial, but highly important facts like you have. Thanks so much for passing it on.

Larry

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

LOL, not sure on that, I was prescribed Emend, it's pricy but the best thing ever...I never got sick once with all that I went through.

Emend is about $150/capsul...but worth every penny if it keeps you from being sick.

They gave me three capsuls for each thee week cycle (nine total). You take one each day beginning the first day of each cycle (about an hour before).. At least that was my schedule.

Others on here swear by Emend as well....

They had me so scared after they gave me the worse case scenarios with each drug also...especially fevers. I told them I was going to stick an electronic meat thermometer in my butt to go off as soon as I reached 100*...LOL, sorry for the Kodak Moment.

JG

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I was also told, several times, that I would lose my hair but I didn't ;-) I had 2 days of cisplatin in 3 week cycles and kept waiting for the day that I would wake up and find clumps of hair on my pillow...it never came.

We all react differently to treatment and I'm hoping you are one of the lucky ones (like me) who have very mild side effects and NO hair loss.

Stay strong,
Glenna

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I had 35 radiation treatments and 3 rounds of citsplatin and I did not lose all my hair. I did cut it short, couldn't stand the feeling of the hair bunched up in the mask. It thinned - but it thinned after I had given birth also. (Those many many years ago.) Citsplatin knocked me on my ***. However I was told NED at 7 weeks - so it worked. I had a scc on my hypopharynx that they couldn't remove. The sugeon decided not to remove the
lymph node if he couldn't remove the tumor. It is unfair that you got the disease. You are strong. By the time that little boy of yours starts trying to sit up you will be finished treatments and feeling good again.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad had the same Chemo only 6 rounds. He did not lose his hair at all. He followed the nurses orders and took the anti nausea meds right on schedule. There was only one week at the end that he felt a little bad, that only lasted a day. His radiation did cause him to lose the hair on his face, but it is coming back now.

I was really upset when I heard he had to have chemo in addition to the rads, but I am glad that he did.

You will be ok, just follow all of the nurses directions and this will be over before you know it.

Give the new baby a snuggle for me.

Kathy

Hondo's picture
Hondo
Posts: 5782
Joined: Apr 2009

We understand, just please don’t let it get you depressed keep thinking I am going to be a survivor, I am going to live to see my grandchildren. You are a very strong person this is just a bump in the road of life that some of us have to go through.

All the best to you.
Hondo

Lena Rose
Posts: 73
Joined: Apr 2010

Hi Kristy,

My husband also went through 7 weeks of cisplatin. The oncologist told him to "COUNT ON LOSING YOUR HAIR." Well, he didn't, it just thinned a bit. Hang in there, stay strong!

seahaven
Posts: 10
Joined: Oct 2009

I had Radiation and Cisplatin at the same time. 30 sessions of rad and 3 of cisplatin. I did not loose my hair but it did get pretty thin. The hair on my neck fell out but came back in under two months. I was told that I would not live and I am now cancer free. Hang in there and keep positive.... it won't be long and you will be looking back, holding your baby and this will all be behind you ///// stay positive and prayer helps too.

Best to you
ed

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Kristy. I lost hair to radiation, not chemo. The path the rads took through my body are the places that hair fell out. The good news is that it's growing back, albeit slowly. The areas that received the most rads (my neck) are still naked and will most likely stay that way.

Hair loss due to chemo is symmetrical. With rads the hair loss follows the path of the ray. For months I had a spiral on the back of my head where no hair grew. I looked kind of mangy so I shaved my head to hide the spots.

Best,

Mick

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

Kristyn,

Add me to the list of folks who didn't lose their hair to cisplatin.

I told the doctor up front that I'd shave my head rather than let it fall out to chemo. He told me not to cut my hair. Like others have said, hair loss isn't a major side effect of this drug.

I concur with the others that you need to stay vigilant on the nausea medications. Take them on schedule. It's much eaisier to prevent than it is to get rid of.

Rush

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Fear not, girl- you'll be okay. The above advice for Emend is correct, as is having a prescription of Compazine in the ready. I did not do as Rush advises, in that I waited until feeling sick before taking. Worst time was after more sleep than usual, and when I'd first wake-up, due to bad saliva build-up. Only had a couple minor bouts with the vomits, and hope your experience is no worse. And, my hair only thinned, along with losing some in the back at the bottom.

The best advice I can give is to stay Positive. You might think this'll be difficult, but it can be done. BOTTOM-LINE FACT: YOU ARE GONNA SURVIVE THIS (so get used to it!), and that single fact can be the foundation of everything for you, as you keep your main focus on that light at the end of the treatment tunnel. This is 2010, and great progress has been made. And, not only will you survive, but your post-treatment life will be entirely acceptable, if you let it be. There might very well be rough times ahead for you, but know that many of us have also experienced such times. For me, I kept my Drs. well in the loop as to how I was physically doing, and they provided all the help I needed to get thru the rough times. Would advise you doing the same. You will be okay.

Believe

kcass

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I had three rounds of Cisplatin and didn't lose my hair.
The radiation did temporarily kill my beard, and it nuked some of the hair on the back of my head so I had this sort of Moe Howard/Ish Kabibble (if you know who he was) thing going. But a few months out, my beard came back -- though I'm now shaving it off -- and I have a full head of hair again.
But when you're fighting cancer, hair ought to be the least of your worries.

--Jim in Delaware

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi Kristyn, I also had 35 radiation treatments and 3 rounds of cistplatin and did not lose any hair. Maybe, just maybe it thinned out a little. What was affected though was my facial hair. I don't need to shave my neck below the jaw bone any longer and above the jaw bone is much thinner and softer. Shaving is a breeze these days!! I don't think I will be able to grow a beard again. Its too hot in the tropics for that anyways. Stay strong girl!!! Cheers

Jimbo

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My husband had 6 weeks rads (30)and 6 rounds Cisplatin, We did not know for sure always thought if you had chemo you would loss your hair, So he had it cut short, He did not loss his hair . This time he is taking carbosplatin he is lossing a little but not all of it he will go this week for his 5 ground.

pascotty's picture
pascotty
Posts: 164
Joined: Aug 2010

Hey there kirstyn. I didn't lose my hair. It just went a little thin. I did noticed that I lost some at the back. Like an undercut from where the radiation must have hit. But other than that I still had my hair. My profile pic is four weeks post treatment. I hope this is helpful. I also had wigs ready and waiting and never had to use them. Hope you experience the same. Love and happiness to you and your family xxxx

rozaroo
Posts: 667
Joined: Apr 2010

Kirstyn, my oncologist mentioned to me that my hair would thin, however, no biggie! I had a script for a wig as my insurance covered it but I never used it. My hair thinned out a bit but not much. I have quite a thick head of hair so you could not even notice it. However, at the nape of my neck where radiation was hitting there was a patch missing like a stripe but my long hair covered it. Your radiation team can tell you exactly where you may experience some hair loss. That way I was prepared. Also my oncologist said not to colour my hair for 6 month's post treatment as it can cause baldness or alopecia. So I paid attention to that. Last evening I finally went for my hair colour. What a great feeling. I was bleaching my hair before but now decided to use less harsh chemical's on my hair & I am fine with that. Easier to maintain plus less breakage. I had three treatments of the cisplatin & 35 rad's. Best of luck with your treatment Kirstyn, I was terrified of
loosing all my hair also, but it all worked out okay in the end!
Hugg's Roz

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