Cancer, looking good, dating, sex, etc...

aleftina

I haven't even thought of looking good or let alone dating or sex, but I think I should do something about it. If I loose my hair, I will get a wig, one lady at the cancer center told me she hated the wig, it was itching her sculp and she was uncomfortable, she just wore a scarf on her head, in fact all the women at the center walked around bald, they had caps on but you could see the baldness. Perhaps they didn't bother at the center but if they went out they wore wigs. Do you loose hair on oxaliplatin/Zeloda? Does insurance pay for a wig? I think I will get a wig and make myself pretty. And maybe will go on a date, but I will order a cheap dinner in case I throw it up.

pattieb

I don't know if oxaliplatin will cause you to lose your hair, it all depends on the person I think. My first two rounds of chemo I didn't lose my hair, but I'm getting ready for round 3 and I will be taking oxaliplatin so we will see what happens. Good idea about the cheap dinner but maybe a more expenisve one will taste better LOL
I know wigs are hot and itchy so if I do lose my hair this time I think I will wear a scarf too.
Pattie

aleftina

There are some cute ones http://www.headcovers.com/

aspaysia

Chemo for recurrent cc was a cocktail of 5fu/leucovoran/xeloda plus either campostan (hair loss) or oxaliplatin (keep hair)
My oncologist chose the latter. I think he is a sucker for redheads.
I had diarrhea and some nausea controlled by lomotil and compazine respectively. My hair thinned a bit but not enough to even show.
Oxaliplatin is no party but don't try on any wigs.

KrisS

aspaysia said:

Chemo for recurrent cc was a cocktail of 5fu/leucovoran/xeloda plus either campostan (hair loss) or oxaliplatin (keep hair)
My oncologist chose the latter. I think he is a sucker for redheads.
I had diarrhea and some nausea controlled by lomotil and compazine respectively. My hair thinned a bit but not enough to even show.
Oxaliplatin is no party but don't try on any wigs.

My hair thinned a lot on Camptospar, butnot enough to have a wig. It grew back quite well while on oxaliplatin/5-FU 3 cycles last winter, and on oxaliplatin/Xeloda 6 cycles now.

There are a bunch of drugs to control nausea. What works well for one may not be as good for another, and it may take some trying out of things to see what is best for you. I would go out and order that great dinner before your taste declines-which mine did after about 6 wks.

Kris

aleftina

KrisS said:

My hair thinned a lot on Camptospar, butnot enough to have a wig. It grew back quite well while on oxaliplatin/5-FU 3 cycles last winter, and on oxaliplatin/Xeloda 6 cycles now.

There are a bunch of drugs to control nausea. What works well for one may not be as good for another, and it may take some trying out of things to see what is best for you. I would go out and order that great dinner before your taste declines-which mine did after about 6 wks.

Kris

Aspasia, thank you for the good news that I might not lose my hair, I am going to my favorite hairdresser and do the roots then!

Kris, thank you for the advise, I will enjoy great dinners while I can!! I had a hard time with nausea on 5FU/LU last time around, not in the beginning but after few months, I was on campazene and them z.. something and still had a hard time, I think it was mental too, I would get sick when I got to the onc office. Any cures for that?

Unknown

Hello again. Bert's hair even thinned out with 5fu/leuc...hey, but it was thinning anyway. My mom lost all her hair on the chemo she was on for lung cancer...but that was inevitable...she got hit right from the get-go with big, heavy guns. I took her to a real fancy little shop where they served teas and little cakes and we made a fun girl's day of getting her a wig, some nice scarfs, and night caps (hehehe) her head got cold. But it all made her feel much better and put some sort of "normalness" in her life.

Fondly,
Monika

andreae

Hi Aleftina,

Over the past 11 mths. I have had radiation, infusional and bolus 5FU, a surgery that involved pulling my colon through my stomach and removing half my vagina and I now have had two rounds of Xeloda and oxaliplatin - and absolutely no one can tell... Somehow, I still have a full head of hair and, since I have put on weight (which was a lot of fun, let me tell you), my body is back. Honestly, chemo is an idiosynchratic thing. Just last night, I went to a party and my best-friend insisted we leave early b/c he was tired of ppl. telling him how great I look. The day I met my new oncologist he asked me where the patient was assuming that I looked too healthy for someone with metastatic cancer! All this to say (before you all begin to think that I'm an egotistical maniac) that you might get lucky and have no side effects from the chemo. And even if you do begin to lose weight/hair ect. do what you have to do to feel good about your appearance. When I look sick, or run around in my granny jogging suit, I feel much sicker. Whenever I go to chemo, I get so dressed up that ppl. ask me where I'm going afterwards. But I simply enjoy getting dressed up. It makes me feel good. And if you feel up to it, I strongly advise thoughts about dating and sex. I have recently, uhmm, how can I say this delicately, tentatively opened the store for business and begun to re-explore my sexuality and it's done me a world of good. My friends say they haven't seen me this happy in a long-time. I strongly believe in the healing power of touch and I think being caressed by someone you care about is of the upmost importance. However, it can be a very hard thing to do, especially when you're not feeling well, your body is going through changes, you feel vulnerable, ect. But if you feel up to it, I say go for it or at least keep the thought entertained.

Be well (and even wild, if you feel like it...)
Andrea

aleftina

andreae said:

Hi Aleftina,

Over the past 11 mths. I have had radiation, infusional and bolus 5FU, a surgery that involved pulling my colon through my stomach and removing half my vagina and I now have had two rounds of Xeloda and oxaliplatin - and absolutely no one can tell... Somehow, I still have a full head of hair and, since I have put on weight (which was a lot of fun, let me tell you), my body is back. Honestly, chemo is an idiosynchratic thing. Just last night, I went to a party and my best-friend insisted we leave early b/c he was tired of ppl. telling him how great I look. The day I met my new oncologist he asked me where the patient was assuming that I looked too healthy for someone with metastatic cancer! All this to say (before you all begin to think that I'm an egotistical maniac) that you might get lucky and have no side effects from the chemo. And even if you do begin to lose weight/hair ect. do what you have to do to feel good about your appearance. When I look sick, or run around in my granny jogging suit, I feel much sicker. Whenever I go to chemo, I get so dressed up that ppl. ask me where I'm going afterwards. But I simply enjoy getting dressed up. It makes me feel good. And if you feel up to it, I strongly advise thoughts about dating and sex. I have recently, uhmm, how can I say this delicately, tentatively opened the store for business and begun to re-explore my sexuality and it's done me a world of good. My friends say they haven't seen me this happy in a long-time. I strongly believe in the healing power of touch and I think being caressed by someone you care about is of the upmost importance. However, it can be a very hard thing to do, especially when you're not feeling well, your body is going through changes, you feel vulnerable, ect. But if you feel up to it, I say go for it or at least keep the thought entertained.

Be well (and even wild, if you feel like it...)
Andrea

Andreae, do you think you are tolerating the chemo so well because you are young and strong to start out with? I know I should be more positive and not anxious about it, and I am feeling better about it now that I read that Oxaliplatin is better than CPT-11 which my onc was going to put me on first, but I went to the cancer center instead and they are going to start with Oxa, which makes me think from what I read on this board that they are smarter than my old onc. So I am feeling a little better about it, but still worry a lot if I will be able to work and how I will manage everything if I am tired and/or have the horrible side effects like the neuropathy and cold/pealing hands/feet, that is a concern. But it's great to have you as an example and know that it's possible to function close to normal, thank you so much for sharing your experience with us. Tina

KrisS

aleftina said:

Aspasia, thank you for the good news that I might not lose my hair, I am going to my favorite hairdresser and do the roots then!

Kris, thank you for the advise, I will enjoy great dinners while I can!! I had a hard time with nausea on 5FU/LU last time around, not in the beginning but after few months, I was on campazene and them z.. something and still had a hard time, I think it was mental too, I would get sick when I got to the onc office. Any cures for that?

I'm not sure about how to cure the queasiness when you walk into the office, other than being optimistic that this is going to work and not be so bad. I guess I always have a good time when I go. Chatting with fellow patients/nurses is fun and I guess keeps me distracted.

There are a variety of antiemetics and perhaps they have not found the one that works best for you. I have tried a variety. Compazine works, but makes me very sleepy, lorazapam-worked great for cramping and mild nausea, causes me to be only slightly sleepy - I took one last night right after chemo, maybe that would be helpful for you if prechemo nausea is a problem. AS for more heavy duty antiemetic drugs-I have taken Kytril and Zophran, but have had less sucess with those than others have. Anzemat works better for me. I have a few in my drug cabinet for more serious nausea, but haven't had to take any in a long time. Although I vomit very rarely with oxaliplatin/ Xeloda, queasiness most of the day can be annoying. I found it to be worst on day 3 and 4. However, they have a relatively new drug, Emend (aprepitate), which works best on the late effect nausea. I am currently on this. It works great for me.

I find that getting out for a walk or a bit of exercise helps also. I joined a gym so that I could walk exercise inside during this cold weather. I've been walking outside with some nice new warm ski gloves at 25 degrees, but I suspect that I won't be as enthusiastic when it hits 3 degrees here in Wisconsin!

As for loss of taste.I guess I should clarify that I have not lost it all. Cheese and vegetables still taste great. Most fruits are tasty, but meats and sauces are not as flavorful. Hot chocolate tastes OK, but Godiva chocolate might as well be stale cheap candy bar, and I have not bought any of my favorite junk food-ice cream in a year. pumpkin pie, however, tastes great and my appetite is as good as ever so Thanksgiving dinner was still great!

As far as the hair, one thing my oncology nurse said was not to do anything chemical to my hair while on chemo. So I tinted it the day before I went on chemo. I wanted to look as good and healthy as possible for the surgeon who was going to evaluate me to see if I would be accepted as a candidate for a big surgery! Although I did not lose a lot of hair on CPT 11, the hair that did fall out was the older longer hair-the stuff that was still very red, so now I am a bit greyer:(. I pondered if people with frizzy hair like me would get straighter hair, since people with straight hair get curly hair. No such luck. It is still as frizzy as ever. Oh well can't have everything.

Best wishes,

Kris

aleftina

KrisS said:

I'm not sure about how to cure the queasiness when you walk into the office, other than being optimistic that this is going to work and not be so bad. I guess I always have a good time when I go. Chatting with fellow patients/nurses is fun and I guess keeps me distracted.

There are a variety of antiemetics and perhaps they have not found the one that works best for you. I have tried a variety. Compazine works, but makes me very sleepy, lorazapam-worked great for cramping and mild nausea, causes me to be only slightly sleepy - I took one last night right after chemo, maybe that would be helpful for you if prechemo nausea is a problem. AS for more heavy duty antiemetic drugs-I have taken Kytril and Zophran, but have had less sucess with those than others have. Anzemat works better for me. I have a few in my drug cabinet for more serious nausea, but haven't had to take any in a long time. Although I vomit very rarely with oxaliplatin/ Xeloda, queasiness most of the day can be annoying. I found it to be worst on day 3 and 4. However, they have a relatively new drug, Emend (aprepitate), which works best on the late effect nausea. I am currently on this. It works great for me.

I find that getting out for a walk or a bit of exercise helps also. I joined a gym so that I could walk exercise inside during this cold weather. I've been walking outside with some nice new warm ski gloves at 25 degrees, but I suspect that I won't be as enthusiastic when it hits 3 degrees here in Wisconsin!

As for loss of taste.I guess I should clarify that I have not lost it all. Cheese and vegetables still taste great. Most fruits are tasty, but meats and sauces are not as flavorful. Hot chocolate tastes OK, but Godiva chocolate might as well be stale cheap candy bar, and I have not bought any of my favorite junk food-ice cream in a year. pumpkin pie, however, tastes great and my appetite is as good as ever so Thanksgiving dinner was still great!

As far as the hair, one thing my oncology nurse said was not to do anything chemical to my hair while on chemo. So I tinted it the day before I went on chemo. I wanted to look as good and healthy as possible for the surgeon who was going to evaluate me to see if I would be accepted as a candidate for a big surgery! Although I did not lose a lot of hair on CPT 11, the hair that did fall out was the older longer hair-the stuff that was still very red, so now I am a bit greyer:(. I pondered if people with frizzy hair like me would get straighter hair, since people with straight hair get curly hair. No such luck. It is still as frizzy as ever. Oh well can't have everything.

Best wishes,

Kris

Kris, thank you for the weath of information!! It's a blessing to have you here. I should relax and not worry so much. I do hope I will be able to work though, finances is a concern. So you don't get sick right after the treatment but on the 3rd or 4rth day?

KrisS

aleftina said:

Kris, thank you for the weath of information!! It's a blessing to have you here. I should relax and not worry so much. I do hope I will be able to work though, finances is a concern. So you don't get sick right after the treatment but on the 3rd or 4rth day?

Yep Day 3 and 4 are most tiring for me and for at least a moderate numbers of others. Last chemo I got on a Friday afternoon. I flew to Maryland to do relief work at my old place of work. Worked all Sat afternoon 6-7 hrs. However, I stopped and bought cottage cheese, cereal, milk, fruit bland stuff and some magazines because I was tired. I slept for 11 hrs, and other than going out for an hour hike with a friend, I vegged out in my hotel room to read, watch TV all day Sun. I worked 8 hr Mon. but went right to bed afterwards. Tues and Wed, I worked 12 hrs and wasn't very tired.

I relaxed Thanksgiving and Friday, then went to a busy large professional meeting Sat through Friday. I have a pedometer, and I found I was walking 2-5 miles a day at the meeting!

I do have an ileostomy so I do not pay too much attention to diarrhea. I do take Imodium to slow things down if things get really watery. That possible side effect may be more of a hassle if you don't have an ostomy.

Best wishes,

Kris

aleftina

KrisS said:

Yep Day 3 and 4 are most tiring for me and for at least a moderate numbers of others. Last chemo I got on a Friday afternoon. I flew to Maryland to do relief work at my old place of work. Worked all Sat afternoon 6-7 hrs. However, I stopped and bought cottage cheese, cereal, milk, fruit bland stuff and some magazines because I was tired. I slept for 11 hrs, and other than going out for an hour hike with a friend, I vegged out in my hotel room to read, watch TV all day Sun. I worked 8 hr Mon. but went right to bed afterwards. Tues and Wed, I worked 12 hrs and wasn't very tired.

I relaxed Thanksgiving and Friday, then went to a busy large professional meeting Sat through Friday. I have a pedometer, and I found I was walking 2-5 miles a day at the meeting!

I do have an ileostomy so I do not pay too much attention to diarrhea. I do take Imodium to slow things down if things get really watery. That possible side effect may be more of a hassle if you don't have an ostomy.

Best wishes,

Kris

Kris, this doesn't sound too bad, I hope I can work too if the main side effect it tiredness, I can just rest and sleep, are you ever tired at work to the point that you can't work? Thanks again for all the info, that's very encouraging and inspiring! )

spongebob

Ahoy, Tina -

I had some hair loss with 5FU/LKv, but not much. I asked my onc if we could target just the hair on my back to fall out. He didn't get the joke. Alas, it's nair or nothin'.

But enough about my hairy back. Something to keep in mind if you do lose some hair; some of the sexiest women in the world are or have been bald; Sinead O'Conner, Grace Jones, Demi Moore (GI Jane), that sexy alien in Star Trek. Annie Lennox from the Eurythmics doesn't go bald, but she cuts it close. Just tint it white and walk around humming "Sweet Dreams Are Made of These" and people will think you're FAMOUS!

As for "opening for business" (as Andrea put it), I guess things are a bit different for us guys... when our counts are down, seems like our "closed for business" sign is out. (Maybe it was just because I was working 2 jobs and going through a nasty divorce!)

Anyway, I can't really speak to looking pretty. I could tell you I put on my corsett, high heels and fishnets and sang the songs to the Rocky Horror Picture Show - but then I'd be lying (or would I)?!?

Anyway, you go, girl! Have fun and stick to chicken (it digests better than red meat or salad).

Best regards

- Johnny Quest Bob (formerly known as SpongeBob)

aleftina

spongebob said:

Ahoy, Tina -

I had some hair loss with 5FU/LKv, but not much. I asked my onc if we could target just the hair on my back to fall out. He didn't get the joke. Alas, it's nair or nothin'.

But enough about my hairy back. Something to keep in mind if you do lose some hair; some of the sexiest women in the world are or have been bald; Sinead O'Conner, Grace Jones, Demi Moore (GI Jane), that sexy alien in Star Trek. Annie Lennox from the Eurythmics doesn't go bald, but she cuts it close. Just tint it white and walk around humming "Sweet Dreams Are Made of These" and people will think you're FAMOUS!

As for "opening for business" (as Andrea put it), I guess things are a bit different for us guys... when our counts are down, seems like our "closed for business" sign is out. (Maybe it was just because I was working 2 jobs and going through a nasty divorce!)

Anyway, I can't really speak to looking pretty. I could tell you I put on my corsett, high heels and fishnets and sang the songs to the Rocky Horror Picture Show - but then I'd be lying (or would I)?!?

Anyway, you go, girl! Have fun and stick to chicken (it digests better than red meat or salad).

Best regards

- Johnny Quest Bob (formerly known as SpongeBob)

Bob, did you hear about a guy who had cancer and was told he had 6 months to live, so he decided to enjoy the time he had left, he loved comedies and went and rented all the comedies he ever wanted to see and laughed his butt off for 6 months, but he was not dead however, so he went to the doctor and the doctor couldn't find the cancer... :DDD

spongebob

aleftina said:

Bob, did you hear about a guy who had cancer and was told he had 6 months to live, so he decided to enjoy the time he had left, he loved comedies and went and rented all the comedies he ever wanted to see and laughed his butt off for 6 months, but he was not dead however, so he went to the doctor and the doctor couldn't find the cancer... :DDD

Tina -

Actually, I did. It is one of the many good anecdotes in the book "Chicken Soup for the Surviving Soul". It's a great book and I highly recommend it. I'm going to see Elf this weekend.

aleftina

spongebob said:

Tina -

Actually, I did. It is one of the many good anecdotes in the book "Chicken Soup for the Surviving Soul". It's a great book and I highly recommend it. I'm going to see Elf this weekend.

We just saw Elf, it was awful. Sorry.