NEW TO THE GROUP w/questions

SPEDTEK
SPEDTEK Member Posts: 7
edited March 2014 in Colorectal Cancer #1
I WAS DIAGNOSED WITH COLORECTAL CANCER ON JUNE 25 OF 2004, ONLY SIX MONTHS AFTER MY DAY DIES FROM CANCER (ON CHRISTMAS EVE). THIS WAS ON A FRIDAY, AND ON THE FOLLOWING MONDAY I WENT IN FOR A RECTAL SONOGRAM TO SEE HOW ADVANCED THE CANCER WAS. PRAISE THE LORD, IT WAS IN EARLY STAGES AND HAD NOT GONE THROUGH THE COLON WALL. EVERYTHING WAS JUST RIGHT FOR SURGERY TO BE DONE RECTALLY VS. CUTTING MY STOMACH OPEN. THE NEXT FRIDAY I WAS IN SURGERY. THEY GOT ALL OF THE CANCER OUT WITH CLEAN MARGINS, THANK GOD. NOT MUCH LATER, I STARTED MY CHEMO(5FU) ON A CONTINOUS 24 HOUR PUMP FOR THE NEXT 7 WEEKS, ALSO STARTING EVERYDAY RADIATION FOR 7 WEEKS. I WAS IN THE HOSPITAL MANY TIMES FOR VARIOUS THINGS DURING ALL OF THIS.
MY QUESTIONS ARE THESE:

I DIDNT LOOSE MY HAIR DURING CHEMO BUT SINCE CHEMO MY IS FALLING OUT. DONT GET ME WRONG, I AM NOT BALD, I STILL HAVE A HEAD OF HAIR BUT GETTING THINNER BY THE DAY, IT COMES OUT EVERYTIME I BRUSH MY HAIR OR JUST RUN MY HANDS THROUGH IT.

I WAS GETTING RADIATED IN THREE SPOTS, TAILBOAT, AND EACH HIP. SINCE THE RADIATION, MY HIPS HAVE STARTING ACHING VERY BADLY. IT HURTS TO WALK, SIT, CROSS MY LEGS OR ANY MOVEMENT OF MY HIPS. THE DOCTORS SAY THAT IS NOT USUAL FOR THIS TO HAPPEN SO SOON AFTER TREATMENT. THEY HAVE DONE A BONE SCAN AND XRAYS, BOTH SHOWING NOTHING. I HAVE BEEN ON A COUPLE OF DIFFERENT PAIN MEDS AND ANTI-IMMFLAMMATORY. HAS ANYONE ELSE HAD ANYTHING SIMILAR?

MY DOCTOR ON THE FIRST VISIT TOLD ME THAT THE RADIATION WILL BE DESTROYING MY OVARIES AND THAT I WILL GO INTO EARLY MENOPAUSE, HE SAYS 50% CHANCE. WELL IT APPEARS THAT IT IS HAPPENING. I AM HAVING HOT FLASHES, NO PERIODS, DEPRESSION, ETC. ARE ANY OF YOU GOING THROUGH THIS?

DOES EVERYONE GET DEPRESSED DURING THIS TRIAL IN YOUR LIFE OR IS IT JUST ME? I HAVE HAD TO START SEEING A COUNSELOR AND TAKING ANTI-DEPRESSENTS.

IT HAS BEEN 4 MONTHS SINCE TREATMENT STOPPED AND I AM JUST NOT MYSELF YET. I AM TIRED, DEPRESSED, AND SOME DAYS ITS ALL I CAN DO TO GET OUT OF BED EVERYDAY. AM I EXPECTING TOO MUCH TO SOON.



WELL, I JUST WANTED TO BE IN CONTACT WITH OTHERS THAT HAVE WENT THROUGH OR ARE GOING THROUGH WHAT I HAVE, IT IS NICE TO KNOW YOU ARE NOT ALONE IN THIS.

Comments

  • Fitlisa
    Fitlisa Member Posts: 99
    Hi Spedtek and welcome to our group.

    Im sorry for your diagnosis and for your loss on Christmas eve but you have definitely come to the right place for advice and support.

    I was diagnosed Stage III colon cancer in May, 2004 but this has since changed to Stage IV only 7 months later and after completing Folfox 4 Chemotherapy for 6 months.

    I too lost a good bit of hair. Like you I sure wasnt bald but it did get noticably thinner. I too noticed it as you when I ran my hands through it, brushed it and in the shower. The good news is that it grows back very quickly. During my chemo I didnt have my hair cut at all and I am usually every 6 weeks like clockwork. Since my chemo ended in Nov, I have had 3 haircuts and my hair is back to its old thick self. It will grow back, just give your body a bit of time to adjust.

    I didnt have radiation so I cant comment on that aspect of your treatment or concerns but I know that fatigue, etc. are definitely residual effects of the chemo. I read that it takes the equivalent amount of time that our chemo lasted for our bodies to adjust post-chemo. Therefore, in my case, since my chemo lasted 6 months it will take about 6 months until I feel "normal" again.

    I found that exercise daily, meditation, eating well, guided imagery and having a positive attitude really helped me. I know that may sound hard and just like words right now but it really can help.

    Reach out to friends, loved ones, us here on this site, etc. for support, that also really helps.

    I will keep you in my thoughts and prayers and hope that you do start to feel much better very soon,

    Take care,

    Lisa
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    Welcome to a group that noone wants to join. You have been through alot in the last few months. I also had radiation, but was not left with ongoing pain.
    the radiation and chemo makes you tired. What helped me was returning to work ASAP. I was lucky in that I worked through chemo and radiation. I did have to take time of for the surgery. Many people still wonder how i worked through everything, but for me it was theraputic. I would have stayed in bed and cried everyday. working got me out of bed.
    I was also put into instant menopause. what bothered me the most is the night sweats. I was put on Paxil and that has helped alot.
    If you have any other questions this is a great place for support.
    Maureen
  • taraHK
    taraHK Member Posts: 1,952 Member
    Welcome to this group. I was diagnosed with rectal cancer. Mine was more advanced than yours (Stage III). I had presurgical chemoradiation, then surgery, then postsurgical chemo. I had many of the same experiences as you.
    1. hair. I didn't loose my hair but I definitely had thinning. Oddly, this didn't seem to start during chemo, but some time after the chemo had finished. I even wondered if it was related to the instant menopause (see below). At any rate, it DID thicken up again, over time.
    2. pain with radiation. I had VERY sore and achy "buns" during radiation. It very painful. In my case, it ended up to be muscular -- either the funny position I was in during radiation or my tension during it made me clench my muscles. Yours may be totally different but it did make me remember my discomfort at that time.
    3. ovaries. Yes, the radiation zapped my ovaries, and I went into instant menopause. I never had a period after the radiation started. Hot flashes, night sweats. I deliberated for a long time going on hormone replacement therapy and eventually I did -- with the full support of my doctors. Just for a few years (I was 44 when diagnosed). It sure helps with the hot flashes!
    4. Depression. Oh yes. For me, the most difficult time was after all the treatment had ended -- and I gather this is not unusual. I also saw a therapist, which was helpful. I took anti-anxiety medication for a while.

    I am now 2 years since diagnosis, and 1 yr 8 months since surgery. I'm slowly accepted that it simply takes time. You are not alone!
    Tara
  • spongebob
    spongebob Member Posts: 2,565 Member
    Ahoy, SPEDTEK -

    Welcome to the semi-colons. Sorry we have to meet under these circumstances, but you'll not meet a more energetic, fun, supportive group on any of the discussion boards here at CSN.

    To answer your questions, first let me say I understand exactly how you probably felt whenyou were diagnosed. I was diagnosed just two days after returning from burying my dad who lost his fight to cancer. I didn't see it coming, I was 37 and "too young".

    Regarding hair loss... yes, you may well lose hair when on 5FU and leukovorin. I did. I was never bald either. I often prayed that justthe grey hair would fall out, or just the hair on my back, but alas, it was more general than that. But hair loss IS normal.

    I can't really speak to radiation or menopause - my cancer was on the right side and, as yu may have gathered by my remarks about my furry back, I am not affected by menopause (I'm divorced so there is no vicarious effect either)

    I would say that pain is a message fromthe body that there is a problem. May not be cancer related. How old are you? Have you had a bone density test? How much calcium do you get daily? Have you considered vitamins? As survivors we all hit the General Quarters alarm when we get a new ache or pain... "Is the cancer back?"... "Is this hangnail benign or malignant?" It's normal and it's good. Vigilance is the key to our continued survival.

    As for depression - yep... VERY normal. Kudos to you for having recognized it and taken affirmative action to address it. So many people don't.

    Chemo side-effects can be with you for a long long time. Mine were with me for over a year. Try to exercise and get outside. It will help speed your return to normal activity levels and brighten your outlook on life. I mean, after all, why do we work so hard to get "cured"? So we can ENJOY LIFE!

    Cheers

    - SpongeBob
  • tortal
    tortal Member Posts: 4
    Im also new and I was diagnosed three years ago I was 27 and they tell me that I can't ever have kids. I had 6 weeks of chemo and radiation then surgery a colastomy bag , surgery again and then 12 more weeks of chemo it gets easer but the pain and memories are still there. I kept thinking about the life I had and what I had done and seen and how I lived life to the fullest when I wasn't sick. I also thought how selfish of me to feel sorry for my self when there are little kids out there going threw the same thing I was and they hadn't lived yet and most weren't and that helped me be strong to wont to help the small kids with cancer. I don't now if you like to make quilts are not but St. Judiths hospital does a quilting contest and all the quilts that are made go to the kids of St. Judiths. Don't get me wrong I cryed a lot but I still had to be thankful that I was 27 and not 7. It gets easyer I promise.

    keep your head up Hope
  • taunya
    taunya Member Posts: 390 Member
    Welcome, you will find tons of great support here. I did not have radiation or chemo and it was a least a year before I was back to "normal". Actually it was about a year before I realized how weak and out of shape I had become. I was very depressed and scared a lot. I went to counseling with my family and took anti-depressents too. It still took a lot of effort and time to get back on my feet the way I used to be. I am still afraid sometimes (just read my check-up posts lol). It is a process and takes a bit of time. Hang in there, it sounds like you are healthy and that things will be swinging back in the right direction for you.
    Hugs,
    Taunya
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    taunya said:

    Welcome, you will find tons of great support here. I did not have radiation or chemo and it was a least a year before I was back to "normal". Actually it was about a year before I realized how weak and out of shape I had become. I was very depressed and scared a lot. I went to counseling with my family and took anti-depressents too. It still took a lot of effort and time to get back on my feet the way I used to be. I am still afraid sometimes (just read my check-up posts lol). It is a process and takes a bit of time. Hang in there, it sounds like you are healthy and that things will be swinging back in the right direction for you.
    Hugs,
    Taunya

    Welcome SPEDTEK and Tortal. Never, never think that you are abnormal for being scared, frightened, depressed!!!!!I would think that all here have been there and in probasbly all cases we are still all very fearfull of what lies ahead. The beauty of CSN is that we all have a common disease and we all suffer very similar effects. Now having said the "beauty" of it does not simplify things--it reminds us that our family here readily accepts all newcomers with open arms and with the knowledge that in some small way we are able to help, comfort anyone, sufferers or carers alike.
    Most of your questions have rec. some response here so I won't add my 5 cents. Be aware tho that yes, surgery does take a lot out of us and yes, chemo effects us all in different ways and does take a long time to recover from. No-one here can really give you complete answers but the advice you will get is sincere. We trudge the road together, hand in hand. Keep your chin up, sometimes the road is long but with our friends here you will both find that road easier to travel-------TRUST ME!!!
    luv and huggs, kanga n Jen
  • steved
    steved Member Posts: 834 Member
    Welcome to our group- sorry you have to be here but it is a great place to be ofr support. I was diagnosed stage 3 in Feb last year and have had the preop chemoradiationa the opa nd now post op chemo for six months ( a different regime thatn you but probabaly the same drugs). It is rough and the length of the treatment does in particular get me down. Depression is incredibly coommon in peopl eogin g through this and is often unrecognised as many put it down to the effects of the treatment the cancer or just a 'normal reaction'. I tisi good that you are getting active treatmetn adn support for your depression.
    Can't comment on the ovaries thing as am sadly lacking in that area but did find radiotherapy physically draining and got quite a lot of skin burns from it. No hair loss myself and know this is fairly uncommon with just 5FU chemo but can occur as a result of stress and any major health problem so may be unrelated to the chemo.

    Probabaly best to put these questions to your oncologist and see what they say.
    Anyway welcome again and hope this is useful,
    steve.