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What do y'all think about

Dog Girl
Posts: 100
Joined: Sep 2010

Possibly putting together an "Anal Cancer 101" for the newbies? I think that it could start off with we are here to support each other and there are no off limit/embarrassing questions. What do we all say (or think) when someone new posts? "Sorry you had to find us, but we are glad that you did." It could have the links to all the other AC sites and it could also have the nuggets of wisdom such as "Weeks for years", and that it is an extremely curable cancer. Also that it is unlikely that one would get all the side effects (and just as unlikely to have no side effects at all), but most will have some of the side effects to some degree. It could tell about Teresa Mayhew's book and then also list some of our experiences starting from symptoms, staging, PET scans vs CT scans vs MRI's; Ports vs Piccs, tips of the trade (what to eat; what not to eat), stay hydrated, go into radiation with a full bladder, follow up tests, term explanation (DRE, NED) etc.... We would have to say that this is just a compilation of previous posts and is absolutely not a substitute for talking to your doctors, but I do think we have something important to add because we have been through it and we have survived! For example I was aware of Silvadene and Aquaphor (still my best friend!), but I've recently read about Demablast (?) that is used by new mothers and I think there are all kind of good suggestions and new suggestions, but so much of this is the same too. If we could catalogue this info, both new and that that is repeated over and over and send it out to a newbie, it might ease their fears and help for them to see it in one place. (Of course this is coming from me who didn't read ANY of the material my doctors gave me beforehand as far as what to expect. I did listen to them at the appointments however. :) This site was not up when I went through tx in 2009, but I can assure you I would have been all over it if it had been!) I always say knowledge can be power if one so chooses.

Martha, you would have to be involved (if you agreed of course :)), and Rose C. Sandy, Angela, Randy and Chris for the guy's side of things, Azanne, (basically all the regular posters) and anyone else that wanted to participate. If we divided it up and everyone was reponsible for certain sections I don't think it would be too onerous for any one person. We could go through the past posts and gather the info that is given over and over as well as new info. However I'm not sure how we would transmit this type of document to someone. Can you send a private message and exchange emails and then one or two of us could be responsible for sending it out if requested?

Everyone, please let me know what y'all think about this idea. I've been thinking about this for a while, but I will certainly go along with the opinions of the majority as to whether we should do this or not.

mp327's picture
mp327
Posts: 2857
Joined: Jan 2010

I think your idea is an excellent one! I'm sorry I haven't responded sooner, but I have a one track mind these days with my marathon training. Once that is completed, I will come back down to earth and use my brain again! lol! I hope you get some input from the others here. I will be happy to contribute what I can.

MattButts's picture
MattButts
Posts: 33
Joined: Mar 2012

Being a newbie myself, I look forward to reading it.

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Somehow I missed this post - didn't see it till just now.

I'd be honored to help Dog Girl - I think it's a great idea.

Thanks,
Rose

Captain11
Posts: 88
Joined: Apr 2011

Great idea!!! I am not very computer literate... just the basics... but, I will be more than happy to help in any way that I can.

I finally got my husband to look into getting on the esophageal cancer boards... His cancer has returned, but not in the esophogus... in the bones, lymph nodes in the neck, possibly lung, and we are waiting for the results of further tests.

In addition to this anal cancer 101 set-up, maybe we could work with other posters of other cancers and make up a generic "go to" list.. something that may incorporate possible side effects, what to expects, nutrition tips, etc. just like what we need for our newbies, but for all cancer victims.

I hate this disease!!!

God bless.

sandysp's picture
sandysp
Posts: 754
Joined: May 2011

Captain11 you are so brave. I am so sorry you and your husband are going through all this. You are both in my prayers. Please keep us posted.
Love,
Sandy

sandysp's picture
sandysp
Posts: 754
Joined: May 2011

I am happy to do whatever I can.

Thanks for including me.

Sandy

sandysp's picture
sandysp
Posts: 754
Joined: May 2011

I am happy to do whatever I can.

Thanks for including me.

Sandy

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

i will help in any way that i can. i am not very computer savvy but will help in any way . this site was not up when i went thru tx in 2009. could have really used it. made a lot of mistakes due to fear of constipation. sephie

danker
Posts: 731
Joined: Apr 2012

I just learned of this site. Fortunately, my hospital University Medical Center in Tucson had a colo rectal support group at the cancer center. Thus I got my questions answered by those who had already been through it. It was such a help to allay my fears. the onLy item i can add is RADIAGEL for radiation burn. Oh and maybe LOMOTIL for diarrhea rather than imodium. All in all a great idea. Hope it all pans out.l

shirlann54
Posts: 161
Joined: Aug 2011

I think it is a great idea.That would really help the newbies.....SHIRLEY

Missgrace's picture
Missgrace
Posts: 36
Joined: Apr 2012

Hi Everyone,
I was diagnosed last week and have been going through a battery of tests. My doc says he cannont give me a stage until nesxt week when tests are complete. (Probably 3 or 4). He said stage 4 is not "curable" but chemo could improve remaining quality of life. If stage 3, however, raadiation and chemo are in order. I have read a number of posts about things to do ahead of time and it is very confusing. A list of things to use, take or just have on hand before starting (hopefully) radiation therapy would be wonderful.

mp327's picture
mp327
Posts: 2857
Joined: Jan 2010

I'm sorry that your diagnosis has brought you here and I hope that when your test results all come back you find out that you are not stage 4. Stage 3 is curable and you'll receive the same treatment as stage 1 or 2--chemo and radiation. Also, a lot of people who have stage 4 disease are having good results with clinical trials, so please let us know what you find out--perhaps someone on this board knows of a clinical trial that could help you. However, fingers and toes are crossed that you will be staged at 3 and will have successful treatment with the standard protocol. There are a lot of things that have been used to deal with side effects. It is hard to know exactly what ones will plague you, but the most common ones are fatigue, nausea, diarrhea and mouth sores. Your docs will probably give you meds for nausea. Diarrhea can be eased somewhat by imodium (OTC) or Lomotil (prescription). To ward off mouth sores, rinsing frequently with a mixture of water and salt or baking soda can be helpful. It is critical to stay well-hydrated, so drink even more water than you think is necessary. I always tried to drink a large glass of water after each trip to the bathroom. Pain management should be addressed by your physicians and please do not be afraid to take the pain meds or ask for something different if the ones you are prescribed are not effective. There is no need to suffer! Let others who make offers to help you give you assistance with driving, housekeeping, meals, etc. There will be days when you may not feel up to daily activities and it will give your friends/family a good feeling to know they are helping you. Remember that this is a short treatment, although not fun, that will last only a few weeks. You can get through this--we are here to help.

eihtak
Posts: 822
Joined: Oct 2011

Martha is right, the treatment although tough is rather short compared to many others. I was Staged 3, being pretty darn close to 4 a little over a year ago. I did have surgery to have a colostomy put in before starting treatment, this is more often done for later staged larger tumors...also depending on exactly where it is. If by chance that is the case, do not be alarmed. Number one it is usually reversable, it was easy to deal with after just a little getting used to, and spared mt TONs of discomfort when going through radiation. You will learn and have many questions as you go, and this site is full of truely helpful people. I was under weight when diagnosed and became quite ill from the chemo so became somewhat malnurished. To prevent this, try now to start drinking protien drinks like Boost or even Carnation Instant Breakfast, just to make sure you are starting out strong. You will be in our thoughts and prayers, please post back to let us know how things are going. As always,all in my prayers.

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