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walking, hi i am new to site

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

my name is claudia and i am 34 and was recently diagnosed with rectal cancer. i am in my 4th week of chemo radiation with oral xeloda that i have had to be off of twice already because of low white blood cell counts. i hate being off of it as i do not want to give the tumor a chance but am being told if my WBC are low, xeloda is still working and the concentration is greater in tumor. my tumor is low lying thus i may have to have a perm colostomy and will not know until i awaken from sx. i am receiving tmt at NIH on a TNFerade trial and hope to have sx at Johns Hopkins if I can make it thru my insurance obstacles. i wanted to introduce myself and tell you i am open to any advice. what is this about walking? i have been feeling awful so have not exercised but am getting ready to start walking. is the walking advice in reference to right before surgery???
i have been having symptoms since January but was pregnant (had a beautiful baby girl April 2) so was misdiagnosed as hemorrhoids and constipation until may 27. i try not to focus on all the time passed and am very anxious about the time passed and spread of this disease. i am stage 3 with LN involved on one side.

CAMaura
Posts: 719
Joined: Feb 2005

Welcome Claudia!!

Congrats on the birth of a beautiful little angel, and so pleased to read your post. I am no expert, but I think that the walking is spoken about for general well-being: boosting circulation, working the excess chemicals out of one's system, an antidote to fatigue, and a call to 'smell the roses'. Any form of exercise seems to help, but walking is such great start.

Best of luck to you and I hope you post often. Have a great Fourth!!

Cheers,
Maura

tkd3g
Posts: 768
Joined: Aug 2004

Hi Claudia.

First off, CONGRATULATIONS on your beautiful baby girl. Ahh, I love newborns.

Welcome to this awesome site. No one wanted to be here, but all are happy they came to visit.

I , too, was diagnosed with stage 3 rectal cancer. No lymph involvement ( actually, possible, but it's a long story)

I had 6 weeks chemoradiation with 5FU. So, I am not familiar wwith Xeloda.

Walking is wonderful. I think Maura said it well.

I wanted to add, when you have surgery, walking is so important. Again, for the same reasons that Maura stated. Added to that, it "wakes" up your body after the surgery, gets everything moving again ( including your bowels that will " sleep" for a few days after surgery) and the nurses will make you do it.

It aides in a quicker recovery, quicker discharge , and quicker healing. I walked all the time in the hospital. Got out 3 or 4 days early.

Best of luck with your treatments.

This is a great site. Come often and meet the gang.

Barb ( who is celebrating 1 year cancer free!)

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

xeloda is oral preparation of 5fu . i am not sure what i will have as adjuvant chemo after radiation but likely folfox or what i think is oxy, 5fu, and leucovorin.
Thanks for your encouragement.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Claudia,

Welcome to an awesome site. We will try to help you through treatment and recovery as best we can. We have lots of experience here and lots of advice.

Congratulations on the birth of you daughter.

I am also on Xeloda and have been for 7 months. My doctor has given me a 2 week "rest" period from taking it to let my feet heal. My only side effects are my feet and toenails. Otherwise, I have tolerated this drug very well.

Take care and let us know how you are doing. Walk as much as you can - Barb's advice is good - walking will help the healing process.

Take care.

Kerry

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

Kerry
what happened to your feet and nails?
7 months? is this post surgery?

nanuk's picture
nanuk
Posts: 1362
Joined: Dec 2003

Hi Claudia: Welcome to the world of survivors; what is TNFerade trial? And sx?
Be sure and create a web site so we can see you and new baby girl.. Nanuk

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

sx is short for surgery. I am in an NIH trial where I get radiation daily and Xeloda (oral preparation of 5FU) daily 5 days a week plus the investigational treatment of TNFerade. They inject the TNFerade (synthetic to your body's TNF alpha, tumor necrosis factor, which your body uses constantly to kill cancer cells) into the tumor one time a week under sedation for 5 weeks. The intent is to see if the tumor shrinks more than with the chemoradiation alone in another group. If you want more info, i can send it when my email is working as it down for the long weekend. The NIH has been great and I am really lucky to have had them available to me as I live in the DC area, as I do not trust the doctors with Kaiser anymore. That is my insurance HMO and I hate dealing with them. I recently consulted a malpractice attorney who said unfortunately I have no case as it is difficult to prove harm. You must prove negligence AND harm. I have been having blood in my stool for months. And I had a sigmoidoscopy where he saw NOTHING as he passed the mass right up.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

I'll bet you thought she was having sex at the hospital.

:-0

Welcome Claudia!!

BABIES! How wonderful that you have a little one. My bambino was 20 months old at the time of my dx. I didn't do any chemo (Stage 3 sigmoid colon cancer lymph pos zero mets) therefore I could continue nursing her. :-)

Can you believe you're so young with rectal cancer?? I was 39 at dx (my sister was 29 at her dx) and they figured my tumor was in there for up to 10 years.

So sorry you are having to go through this especially right after having a baby. Don't you just hug her and are amazed at your little miracle who was born while you were ill and didn't know it? I sure did!

peace, emily who has 5 babies! (the oldest being 19)

themis01
Posts: 168
Joined: Feb 2005

Have the doctors considered the neulasta shot for your white blood counts?

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

no. i do not know anything about it. did you use it? i asked about neupogen but they are not keen on the idea as they say it causes the count to rollercoaster. i do not know if perhaps it is not allowed in the research protocol as i am in a study. i do not think they would withold something that would help me but i have been second guessing everyone lately.

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Hi Claudia!! Welcome to the group! I just wanted you to know I was 33 when diagnosed and I'm 39 now. Keep hanging in there!! Congrats on your baby!! She's reason enough to fight with all you've got!
hugs!
MoonDragon

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

you were 33. close to my age. i am sure you get tired of answering the same questions in this discussions...but...what was your diagnosis? and how are you doing now?

bsrules
Posts: 296
Joined: Mar 2004

Claudia,

Congratulations on the arrivial of your new baby!!!! It must be tough dealing with a newborn and going through treatments!!! My hat is off to you!!!!!

I can't add much but agree with everyone else about the walking!!!!! It will do the body good!!!! Hang in there and take one day at a time!!! Give you new baby a GREAT big hug from your new friends!!!! Let us know how you are doing!!!!

Best Wishes and Prayers coming your way!!!!

Sue

taraHK
Posts: 1961
Joined: Aug 2003

Hi Claudia, and welcome. I also was diagnosed with low rectal cancer, stage III, one lymph node affected. I ended up with a permanent colostomy (didn't know for sure till after surgery, but knew it was a likely possibility). I had 5 weeks of chemoradiation before surgery. If you are able to walk now, it might be good, for the reasons others have mentioned (overall health and well-being). But you may be too tired or sore from the radiation....The "obsession" with walking you see on this board is more related to after surgery -- and I am one of those who advocates it. It's important to rest and be good to yourself and listen to your own body. But, walking regularly does seem to help with the healing. I hope you don't end up with a permanent colostomy but, if you do, my opinion is that it is not that big a deal. Yes, it is an adjustment -- but, one does adjust -- and I can do everything now I did before the surgery.
All the best to you. Give that baby girl a big kiss from me!
Love, Tara

jana11
Posts: 708
Joined: May 2004

Hi Claudia, sorry you are here, but welcome. I was 32 yrs old when diagnosed with stage 3 rectal cancer. I am now 35. I have a permanent ostomy because of the tumors location.

Congratulation on your daughter. Allow her to be a driving force in your battle.

I had xeloda + radiation for 5 weeks before surgery. Then the surgery, yep, got the ostomy; then 4 months of xeloda + CPT 11.

When is your surgery sched? I will send you some good tips to get to make surgery and recovery a little easier. Walking now and after is very important. I even started yoga before my surgery and I still do it. My surgeon told me my wonderful recovery and lack of pain must be in part to my yoga and exercises. I simply got a DVD and did what was comfortable at home.

Hang in there. We are always here for you! jana

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

tara and jana: i am interested in getting more input from you regarding the ostomy as i am finding myself quite scared about it. the bigger fear though is having cancer left in or spreading. jana, i have the same scheduling as you. i will have a 4-8 wk waiting period between chemoradiation and surgery as the surgeon sees fit. that is, he/she may think the tumor could use more time to shrink.
what is cpt11?

taraHK
Posts: 1961
Joined: Aug 2003

Hi. You asked for more information on colostomy. Sorry it has taken me so long to reply -- I missed that message, as it slipped to "page two"! If you haven't already discovered it, there is a great website run by the United Ostomy Association -- uoa.org (check out the General Discussion section). As you will see, the assocation is about to dissolve! but the discussion board will carry on. Like this board, there is a lot of practical information as well as emotional support.

The prospect of having as ostomy was awful but, like you say, the most important thing is to get rid of the cancer. As I mentioned in my earlier posting, I have found the colostomy really isn't that big of a deal -- after the initial adjustment. Before your surgery, they should arrange for you to meet with an ET (stoma nurse). She or he will determine the best possible site in case you do have an ostomy. This is important. If you do get an ostomy, you will wear a pouch. The ET will show you different systems and products. It is worthwhile getting samples and trying out different ones till you find what works best for you. It seems in the States many people use what is called a 2-piece system but I ended up using a 1-piece system (I can explain further, if you wish)

In my case, I am able to do something called irrigation -- I do this every morning, then I don't have to wear a pouch (I don't have any output between mornings) -- only a very small cover. Apparently some people cannot do irrigation if they have had radiation, but no-one told me that!

I am physically active, and I can do everything now that I could do before: swim, hike, etc etc. (Both when wearing a traditional pouch and also when irrigating)

Physical intimacy can be an issue after an ostomy, but only if you let it! Requires some open discussions with your partner and (in my case) some creativity in the lingerie department!

I hope I haven't given you too much information. Please feel free to write me with any questions you have. I am always happy to discuss.

All the best,
Tara

ccartwri's picture
ccartwri
Posts: 82
Joined: Jul 2005

Thanks for all the great replies everyone!!!
I look forward to chatting often as I am very scared and needy!!! To see pics of my baby girl, go to
http:homepage.mac.com/fletch.lives

aspaysia's picture
aspaysia
Posts: 253
Joined: Nov 2003

Hi, Claudia. Just saw your website. Great pix. I love looking at families and yours is very handsome, indeed. I can tell the baby really likes her bath. She is a dolll and very lucky to be surrounded by doting grandparents, aunts and uncles, dogs, etc. Is she completely spoiled yet?It won't take long with all those people around.
Sorry you have to be here but glad you came to us. We try to have a bit of fun while fighting our way back to health. Take that baby for walks. And the dog, too. Good exercise for everyone.
Aspaysia, who loves to wheel her niece around the neighbourhood and check out all the gardens.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Claudia,

Your website is FABULOUS! What a beautiful baby. We will all be here for you and get you through this treatment and recovery. You got lots of reasons to fight on.

Kerry

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Kaye2003
Posts: 86
Joined: Mar 2004

My husband was dx with rectal cancer l0/03. Five weeks xeloda and radiation with sat/sun off. We were told definite colostomy. He had surgery 2/04, tumor had shrank so small he didn't need the colostomy. Did 4 months with 3weeks on/ one off with xeloda after surgery. 3/05 still cancer free. We owe this blessing to God and a great support system and great doctors. We just feel blessed everyday because one never knows what tomorrow will bring. You just pray you have the courage and strenght to face it.
You will be added to my prayers.

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Claudia from the resident ozzies in this great CSN family.....welcome. Hey...congrats on the babe...loved your site..brought back some memories here. And ain't dad tha proud one too!!!
Sorry you have to be here gal but at least you know now that "loneliness" with our disease is not in the dictionary.
I too was mis-dx'd....back in 97. My surgery removed the descending and sigmoid colon. It was originally dx'd the same as yours back then.....those pesky little veins bleeding. It was not found until 2003...too late.Geez....so many have had haemharoids mask cancer!
Keep us informed how things are doin Claudia....no secrets here.
huggs, kanga n Jen

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Cladia,
Welcome to the club! Your daughter is beautiful, and a wonderful motivator. Good luck with your continued treatment. A hint for the surgery: I had an epidural during and for 3 days after the surgery, and it made a tremendous difference both in comfort and recovery time. Keep us posted; this is a great place for support, qustions, tips, etc. Judy

rejoyous
Posts: 259
Joined: Nov 2004

Hi Claudia,

Welcome! And congratulations on the birth of your little girl.

I am another of the walking advocates. I walked as soon as I could post surgery, up and down the halls of the hospital for two hours a day, and then all through my six months of chemo, starting right after they unhooked me at the hospital, when I was getting the infusuion through the fanny pack. Walking is a natural anti-depressant, it's good for the colon, and I think it also made me feel like I was actively doing something for my health. But of course sometimes you just can't do it. Our bodies are under a great deal of stress...

The single thing that helped me most through this last year, after my diagnosis, is to keep being grateful for and appreciative of the good things in life. As overwhelming as mothering on top of a cancer diagnosis is, I am certain that your new baby will help you with this. My kids were a beacon of light. Good luck and keep letting us know how it's all going.

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