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nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Hi all,
I am Norma. I started mytomycin and 5fu yesterday. Today I begin IMRT radiation. T4N1MX squamous cell anal cancer. Just wanted to check in. I have been reading the posts for about a week, I feel they have helped me get ready more than anything else. I have always been a fighter and survivor, so we will see how this goes.
Thanks for all the information you have shared.
Norma

z's picture
z
Posts: 1257
Joined: May 2009

Hi Norma,

Welcome to the board, of course I'm sorry you had to find us. Pleae keep us updated on your progress, as we have been there, and can so relate to what your treatment will be like. I wish you well. Lori

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

I'm sorry such a diagnosis has brought you here, but I assure you, you are among others who know what you are going to go through. We will share our information with you and try to help you in any way we can. I hope you'll keep us posted as you go through this journey and please feel free to pick our brains! I wish you the very best.

Chris3
Posts: 53
Joined: Mar 2010

Hi Norma,
So sorry about your diagnosis. We will do whatever we can to help you through the process. We all have you in our thoughts as you begin your treatment protocol.
Chris

sissy310
Posts: 300
Joined: May 2010

Hi Norma - so sorry that you had to join us for the reasons you are. I am new to this group as well and can tell you that the individuals in here are the most compassionate, caring, honest and helpful group I have met. They have gotten me through some tough moments during the beginning weeks. I'm heading into week four of treatment now and their information has helped me get this far building on their knowledge and own experiences. Don't hesitate to come in here and ask questions or express concerns or just to let off some emotion. Hang in there. Everyone told me how fast this would go and I still can't believe I'm almost done with week four. I feel like I just started yesterday. Breathe, take it one day at a time and come in here when you need to. Be well, Marilyne

SueRelays
Posts: 489
Joined: Dec 2009

Hi Norma

Welcome! As much as I love making new friends, I wish I wasn't....as it means yet another has been dx'd with cancer.
I won't repeat what has already been said.....with the exception of " we are here for you"

Just wanted to add to the list.

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Thanks everyone. You all have already helped me just knowing others have been through the same thing.
Norma

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Just chiming in as part of our "support group"! Hang tough and check things out with us. We have lots of experience and are rooting for you!
Priscilla

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Dear norma...you sound like a fighter !!!The next 6 to 8 weeks will be tough...but then will become a faded dream...I am 2 years ned.We're all here for you.....Hugs..alyse

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Oh, I did not know I was to take anti nausea med while on chemo this week. Luckily nausea not too bad til last night and today. Now I will be sure and have some med for my next chemo to go bag.

lisa09
Posts: 32
Joined: Jun 2010

Good luck Norma, it's a tough treatment, but you'll get through it!

Lisa

sissy310
Posts: 300
Joined: May 2010

Hi. part of my chemo bag included the 5FU and Mito but they also infused me with an anti-nausea drug (that lasted 72 hours) and ativan. Do you know if they gave you all those things with your infusion? I think the reason I did not have the bad nausea was because of the anti-nausea drug and ativan they gave me. When I feel nauseous now I take 1/2 ativan. At least it has worked so far. I start week five next week and my second round of chemo so who knows, this time it could be markedly different. I believe in being prepared so have everything at the ready as to what you might need and use it when you have to. That seemed to help me. Hang in there, Mariyne

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Yeah, I got some pills last night. What a diffeerence. Hello... Now I know for the next round. Thanks for your input and I wish you well on your second round.
Norma

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

hi norma..Round two does not include mytomercin..only 5fu...you may not be as nauseus.....alyse

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

Actually, I think most people get both mito and 5FU for both rounds of treatment--I know I did.

z's picture
z
Posts: 1257
Joined: May 2009

I only received one mito infusion on the 1st chemo day. I just had the 5FU on the 2nd chemo cycle. Lori

lisa09
Posts: 32
Joined: Jun 2010

I also had Mito both rounds. Sorry to say, second round was much worse for me.

Lisa

sissy310
Posts: 300
Joined: May 2010

That is interesting as the nurse told me that I would be getting the Mito with my second round but maybe she was mistaken...I'm going to have to check on Tuesday to be sure.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I don't know if I got infusions but did have ativan and used it early on. I found out it is pretty habit forming so didn't use it the whole time and had one day and a half period of terrible nausea... I don't remember exactly at what point in chemo but it was during chemo. I know if I need chemo again I will use it as suggested!

melbas's picture
melbas
Posts: 43
Joined: Jul 2010

First, let welcome Norma tot our little group of information. If you have a question, you'll most likely find an answer here, If not, you'll always find something in our discussions to help you out a little. I just got out of a 10 day stay in the hospital...I had a horrible reaction to 5fu, they mouth is finally healing, I actually chewed some food today!!! But I am bruised everywhere and it hurts to even touch my skin. Looking forward to more improvement. They took me off treament while I was in there, so now they have to start all over, hopefully with a lesser dose of the cheno. Keeping you in our prayers Norma. And to whoever hooked we up with Ginger Chews, thank you!!! Melodie

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Lord Have Mercy Melba. I certainly hope it goes better for you now. I am glad you got some food. I am a skinny chick, but I like to eat.
Sincerely,
Norma

sissy310
Posts: 300
Joined: May 2010

Really Melbas - you have been through a lot. How far into treatment are you? I start my second round of chemo tomorrow and am very nervous. While I did not have much of an eventful time with the first round, who knows what will happen with the second. Keep us posted and I hope that everything starts getting better for you. Be well, Marilyne

duckyann
Posts: 162
Joined: Jun 2009

Hi Norma and welcome to the group. I wish you didn't have to be here. I wish you the best through your treatments and please come here as often as needed to ask questions or just vent.

I also had 2 rounds of the Mitomycin. I think the original NIGRO was only one on the first day but doctors have tweak it in different ways.

Marilyn you are coming to the end of treatment fast and you are going through it with flying colors. I wish you minimal side effects with your next round of chemo and to the finish line.

Take care

Nancy

melbas's picture
melbas
Posts: 43
Joined: Jul 2010

Well, i was going into week 3 but now thay have to start back at week one, with just radiation, with a follow up with the oncologist Thurday after radiation/ Hopefully with a much lower dose, I'm not a big person to start with. I'm 5', usually hold 102 - 105 lbs, i went down to 89.4 at the start of treatment, today i'm up ro 93.6. Now that I can actually eat somewhat soft foods, I hope to get back up over the 100 mark. Now that I;m home I'm also trying to get some stength back. And walking to promote bowel movement. This post is like my lifelinen right now. Instead of reading, watching TV, or playing POGO, I sto;p in here a few times per day for inspiration.thanks to all my friends. Melodie

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

Hi Melodie--

I also got down to a dangerously low weight during chemo. My doc told me if I lost anymore weight, he was going to admit me. I am 5'4" and weighed 92 pounds at my lowest. I really had to force myself to eat and some days all I could manage were protein drinks and applesauce. I hope you can find soft foods that will help you put some weight back on. Try to fortify shakes with soy milk, dry milk powder or yogurt. Please keep us updated. Take care.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Melodie- How much of the first round of chemo did you have? How many radiation treatments did you get before they had to stop it? It sure sounds like you have had a doozy of a time. I doubt they can extend the radiation much beyond the original plan but I have no idea what happens with significantly curtailed chemo.

My first round of chemo got cut short because something jammed in the connections and I started to bleed. It was just at the end of a session with a high school kid I was tutoring and I was greatly relieved that she didn't notice because I am sure it would have freaked her out. Fortunately I am a hard-nosed pragmatist and decided a phone call and a dash to the hospital which is only 20 minutes away was in order. They discontinued the infusion, calculated how much I probably missed out on and decided it was less than 8 hours so they would not "replace" it and I just got free of my bag a few hours early. Not much relief considering all the warnings they give you about if that stuff leaks! I was definitely in high anxiety mode.

I never had to be admitted to the hospital - definitely a blessing. I had bad mouth sores, too, but am chronically overweight so they didn't worry about my weight loss - I feel frustrated to have gained a good deal of it back but you light weight girls have a whole different issue that sounds mighty scary.

Protein drinks, high calorie smoothies and enriched ginger cookies for you all!

Everybody, have a good week this week... time does seem to be passing quickly and treatments will be gotten through!

Priscilla

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

All this talk about ginger cookies is starting to get to me! I think I'll have to get some on my next trip to the store. I need a good excuse for buying them, as I'm not having nausea! :)

cujuja4evr
Posts: 106
Joined: Jul 2010

Hi Norma, nice to meet you. I was also diagnosed with squamous cell anal cancer. I just joined the group fairly recently myself and found that I received more help and advice in the first day from this support group than I got from my radiologist the whole six weeks during my treatment. These ladies/gentlemen on here are the greatest! I remember back to when I first started my chemo/radiation combo treatment and the "not knowing what to expect" feeling. But, I took things day-by-day, I had the good days, the bad days, and the ugly! I'm 6 weeks post treatment and I feel great. I'm getting stronger every day and getting back into the swing of my normal life. I only wish that I knew about this discussion board before now because I felt so alone a couple of months ago and I really needed to talk to someone who KNEW what I was going through. But, it's never too late and I feel like I have a brand new family! Best wishes to ya!

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Thanks cuju,
I am glad I found this site right before my txment began. Tricks and tips have been so helpful. Today was an ugly day, but at least I am 1/3rd of the way thru txment. I already referred a friend of a friend to this site, so hopefully they check it out.
I am glad you are progressing along so well. Take care.
Norma

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

As others have said, sorry that you needed a support group but glad that you found this fabulous group of individuals. The support of those who have "been there" will be invaluable.

Wishing you the best,
Joanne

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