Man... I have several questions...maybe ya'll can answer some

idlehunters
idlehunters Member Posts: 1,787 Member
edited March 2014 in Colorectal Cancer #1
Next Tuesday I go for my next PET scan. Fingers crossed I am hoping my lung mets are down to 2 or 3...and I know they are very small as they shrank 50-60% when I had my last PET scan. Question is.... when do you stop chemo and say "hey doc... can we try RFA or something of that nature to rid these last few?" It just seems like it would make more sense to me to stop the chemo that is tearing up my feet (they don't hurt but peel and yuk!)and try something else at this point. My onc. seems to think if we stay on this chemo course that I MAYBE will be in remission.... ok..like when???? and IF.... I just don't understand why we just don't try something else to nip it in the bud. My CEA has gone from 75 to 4.8 over these 7 treatments. 4 mets in liver are gone... 15 mets in lungs have gone to 4 or perhaps less now... I just feel I want to do more than wait on chemo to work. As some of you may know I have been in the hospital 4 times in the past 45 days due to very high amonia levels caused by drug interactions between chemo and my seizure meds. They took away my seizure meds that have controlled my seizures for almost 15 years and put me on new stuff that won't interfere with amonia levels. I have to wait 6-8 weeks before I can drive again until all meds are ok. That is really killing me since the hubby bought me a 2010 Camaro on Halloween.... MAN!!!

Second question.... My skin is turning very dark all over my body. It looks like I have a terrific tan... but I don't. Has this happened to anyone else? Does it go away?

ok...here is a real stupid question...but I gotta ask.... I still have "some" hair left but very very thin..BUT...still some... no eyebrows...but still some eyelashes. Everytime I look in the mirror it scares me.... I remind myself of a sick person or someone that has cancer or something... it's my eyes... they look sick. I feel so ugly.

Anyway...thats all my complaints for now.... appreciate your responses... love to u all

Jennie

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #2
    2010 Camaro!! Wow
    What color is your Trick or Treat car? Lucky gal!

    Hey Jennie, could the dark skin be from the ammonia levels / liver problem from the meds? Just wondered. That would mean it would clear up when your new meds are working and old meds totally out of the system. :o)

    That is

    GREAT

    about the CEA level dropping so much! Congrats! I'm still praying for you and many others.

    Diane
  • karguy
    karguy Member Posts: 1,020 Member
    #3
    I'm hoping
    I'm hoping your meds get straight pretty soon.Congratulations on your cea,and a new camaro,cool.I'll be praying for you.
  • bdee
    bdee Member Posts: 304
    #4
    I can answer one question
    My skin on my upper body only is dark. I call it my chemo tan because I can't be out in the sun with out a lot of itching. I fell and really scraped up my leg a couple of months ago and that scar is VERY dark and not getting any lighter.
    My problem is, I don't really look that sick so when I see people from where I use to work they tell me how good I look and why not come back to work. I lost my hair taking oxy, but when my doctor stopped oxy, it started growing back in a couple of months. I never lost my eyebrows, but all my eyelashes. They grew back really long, but have now fallen out again and grown back so short it looks like I don't have any.
    If chemo is working, and it sounds like it is with the mets going away and the CEA falling, then stay with it.
    This should make you feel better, I'm only 55 and I'll be on chemo for the rest of my life.

    Debbie
  • msccolon
    msccolon Member Posts: 1,917 Member
    #5
    sounds totally normal
    It's called tanning, and it is caused when the chemicals leak through your skin, you probably notice darker spots in the places we sweat more, like creases of your legs and arms. You'll notice your palms are dark as well, kind of simian looking. It DOES go away, however, after chemo stops, and believe it or not very few people notice the skin darkening (at least until you point it out to them! :) ).

    Regarding your wanting to try other things besides chemo, remember that YOU are the one in control here and your docs are part of your staff. If you want to try some other options, get second and third opinions until you hear what you want. You have to be your own best advocate or you'll just be left behind. If you doctor is worth his MD, he won't mind and might be able to help with referrals. Online is a really good resource for finding alternative procedures and where they are performed.
    mary
  • pat9409
    pat9409 Member Posts: 6
    #6
    hI
    jenn,
    Did you know that the American Cancer Association has classes on how to use make up to look better and feel better. Check with your local group and see what they have. May help you with the "I'm Ugly" feeling. Don't worry about how you look. By the way, the same group has wigs that are really good etc... check'em out and good luck Pat
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    I know it's hard, but be patient!
    (Oh, wait, you HAVE been a patient...lol)

    It sounds like the chemo IS working, but just not all the way yet. But I agree with others...if it would make you feel better, ask for a second opinion.

    I can't speak to the 'tan'. It was December/January when I had my infusions, and didn't have much sun...I got too cold outside...but neither from the sun nor the chemo...

    As far as looking in the mirror....well, don't!!! I scared the daylights out of myself the day I came home after having my head buzzed for the breast cancer. I was on day 3 post-chemo, so I was also feeling VERY nauseous. I took great pains from then on to NOT looking at my reflection ANYWHERE...lol...

    Hugs to you, my dear Jennie! And, yes, it WILL get better...I'm out 5 years...and the only visible scar is my surgery scars...

    Hugs, Kathi
  • Nana b
    Nana b Member Posts: 3,030 Member
    #8
    KathiM said:

    I know it's hard, but be patient!
    (Oh, wait, you HAVE been a patient...lol)

    It sounds like the chemo IS working, but just not all the way yet. But I agree with others...if it would make you feel better, ask for a second opinion.

    I can't speak to the 'tan'. It was December/January when I had my infusions, and didn't have much sun...I got too cold outside...but neither from the sun nor the chemo...

    As far as looking in the mirror....well, don't!!! I scared the daylights out of myself the day I came home after having my head buzzed for the breast cancer. I was on day 3 post-chemo, so I was also feeling VERY nauseous. I took great pains from then on to NOT looking at my reflection ANYWHERE...lol...

    Hugs to you, my dear Jennie! And, yes, it WILL get better...I'm out 5 years...and the only visible scar is my surgery scars...

    Hugs, Kathi

    That's my car!
    I had a Camaro for 5 years, my husband gave it to my daughter on her 16th birthday and surprised me with a new mustang. My daughgter totaled the Camaro in 2 weeks, I hated my Mustang convertable. The Camaro fit me like a glove. I have missed it ever since. So hubby has been trying to get me the 2010, but I wouldn't let him............I WANT ONE! Congrats, and enjoy it!

    Back to the important stuff, my skin did turn dark and it disappeared in 4 weeks once I ended Chemo. Hang in there, better days ahead.

    I know what you mean about the eyes and the hair thinning. I am just starting to look like my old self, 6 weeks after chemo.
  • snommintj
    snommintj Member Posts: 601
    #9
    Nana b said:

    That's my car!
    I had a Camaro for 5 years, my husband gave it to my daughter on her 16th birthday and surprised me with a new mustang. My daughgter totaled the Camaro in 2 weeks, I hated my Mustang convertable. The Camaro fit me like a glove. I have missed it ever since. So hubby has been trying to get me the 2010, but I wouldn't let him............I WANT ONE! Congrats, and enjoy it!

    Back to the important stuff, my skin did turn dark and it disappeared in 4 weeks once I ended Chemo. Hang in there, better days ahead.

    I know what you mean about the eyes and the hair thinning. I am just starting to look like my old self, 6 weeks after chemo.

    Who cares how bad you think you look?
    You've got a cool car. I've used that trick for years. Chicks never even noticed how I looked, they just wanted to ride in my car!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #10
    LOOK GOOD FEEL BETTER
    LOOK GOOD FEEL BETTER is an excellent program which helps women living with cancer through workshops. These workshops (free) teach women how to use makeup and other tools to look good & feel better. It is a very successful program & I have heard & read many testimonials regarding how much this program changed women's lives. They teach you you ways to minimize the effects of treatment; for example minimizing the effects of eyebrow/eyelash loss. The program is available at many cancer centres.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #11
    AnneCan said:

    LOOK GOOD FEEL BETTER
    LOOK GOOD FEEL BETTER is an excellent program which helps women living with cancer through workshops. These workshops (free) teach women how to use makeup and other tools to look good & feel better. It is a very successful program & I have heard & read many testimonials regarding how much this program changed women's lives. They teach you you ways to minimize the effects of treatment; for example minimizing the effects of eyebrow/eyelash loss. The program is available at many cancer centres.

    thanks guys!
    as always..... u are always there with wonderful info




    jennie

    oh, by the way...... i painted on eyebrows... put makeup on...fixed what hair I have left.. put on a very tight pair of jeans, cute shirt and knee high boots.... added some cool shades.... and said the heck with it... took my car out for a cruise. Just around town..which is small... ran into several people who HAD to check out my car.... you are SO right snow.... they were more interested in my car than my looks.... but I felt beautiful...and free... ahhhhh.... what a great day it ended up to be
  • Paula G.
    Paula G. Member Posts: 596
    #12
    idlehunters said:

    thanks guys!
    as always..... u are always there with wonderful info




    jennie

    oh, by the way...... i painted on eyebrows... put makeup on...fixed what hair I have left.. put on a very tight pair of jeans, cute shirt and knee high boots.... added some cool shades.... and said the heck with it... took my car out for a cruise. Just around town..which is small... ran into several people who HAD to check out my car.... you are SO right snow.... they were more interested in my car than my looks.... but I felt beautiful...and free... ahhhhh.... what a great day it ended up to be

    Go Girl
    Good for you Jennie. I love the car too!
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232 Member
    #13
    Paula G. said:

    Go Girl
    Good for you Jennie. I love the car too!

    Jennie
    Your on it Girl!!!!! I am so glad for you. Keep Smiling and enjoy!
    Goofyladie (Cass)

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