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larrycimino
Posts: 9
Joined: Feb 2010

Hi all,

Brand new to the board today. I'm a 56 year old male diagnosed with anal cancer on January 22nd - about a month ago.

Of course, like several of you, especially if there are other men (meaning obstinate, stubborn, know it all individuals) out there, you had if for months before finally figuring out that this was not "bad" hemorrhoids.

CT, PET and MRI have all come back negative, though there are some shadows on liver and lungs to be checked down the road. Am in first week of standard protocol, with 5FU bag coming off tomorrow, along with my last radiation treatment for week #1.

So far, so good. Just wanted to introduce myself. My name is Larry. Haven't had a chance to read through all the other threads yet, but will spend the rest of the day on this board. Very happy to find it !

I am fortunate in that my doc has worked directly with the lead chair of the NCCN protocol write up for anal cancer. Feel I'm in great hands.

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

So sorry your circumstances have brought you here. I hope you will find the support you are looking for. Congrats on nearing completion of week 1 of chemo/rad. I always looked forward to Fridays, then having the weekend off during my 6 weeks of treatment. I was diagnosed with anal cancer in 6/08 and am coming up on 18 months post-treatment. So far, so good for me. It sounds like you are in good hands and probably have become well-educated about anal cancer and what is involved with the treatment. It is a tough road, but knowledge is power! I have referred to those NCCN guidelines many times and am quite familiar with them. I encourage anyone who has been diagnosed with anal cancer to go to the NCCN website and print them out. I wish you the very best with your treatment. Many of us have been down that road and crossed the finish line--you will too!

larrycimino
Posts: 9
Joined: Feb 2010

Looking forward to the support. I'll be sure to keep you updated. I'm guessing, after reading most of the posts on the board, that I might be the only male currently on the site that has been DX'd with anal.

steve714's picture
steve714
Posts: 15
Joined: Feb 2010

Hi Larry. Good to find you and others on this subject, Im a 55 year old male newly diagnosised with anal cancer, I just had surgery to remove what I once thought was a roid. I have showed my ass to more people in the last month, than the 50 years previous lol. I am going to start chemo and radiation in a couple of weeks. I have a ton of questions and was glad to find this site! Main question now is will I be able to drive myself to treatment? Also, I have Parkinsons and am a little worried about how treatment will effect that. Just knowing ya'll are out there is a big relief. Good luck to al of you!

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I want to wish you the best with your upcoming treatment. I know what you mean about showing your ass--I'm waiting to see mine appear on the front page of the local newspaper! :) I was diagnosed with anal cancer in June 08 and my butt's been seen by many in the last 21 months. As for your question about driving to and from treatment, I drove myself 4 out of 5 days a week (my husband always took me on Mondays, his day off). I had no problems, but I'll say this. I did not take as much pain medication as I probably should have because I knew it would impair my driving. So, if you get to the stage where you need to heavily medicate, do so and find someone to take you to treatment! Your comfort has to be priority one. There is no need to be a hero--there are no extra points for that. I can not give you any insight as to how treatment may affect your Parkinson's--I'm sorry you are having to deal with that on top of everything else. Best of luck to you--please let us know how it goes.

steve714's picture
steve714
Posts: 15
Joined: Feb 2010

Glad to see someone else who approaches this with a sense of humor. I mean come on how much more embarrassing can it get than ass cancer! At first I was a little shy about it, but now my pants are around my ankles soon as the doc wallks in lol.. Im getting a little annoyed at the lack of info Im given. Sometimes I think the Doctors forget I have had NO experience with any of this. I went into the oncolights thinking and hoping the cancer was gone and this visit was just so the surgen could say he covered all his bases. I left the Oncoligst with an Rx and a choice between a chest or arm IV port plus the words chemo and radiation bouncing around in my head. I got home sat down and looked at the dog and said "What the hell". Thats when I started looking for folks like you guys, thank God you are here! I will need your help over the next few months, and I hope you will need mine too! So lets hold our asses high and not be ashamed !

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

Steve--

Yes, I think maintaining a sense of humor helps get through this. It might not work for everyone, but did for me. I always had my rad techs laughing and there was a huge payoff, as they took such very good care of me and always were so glad to see me, even on my worst days. I just recently added up all of my charges related to diagnosis and treatment and soon I will top the $500,000 mark. So now I refer to my butt as my "half-million dollar booty!" I have to laugh at this stuff, otherwise I would be in tears all the time.

As regards the port, I had a chest port and it worked like a charm. I can not give you any insight on the arm PICC line, but I know many people get them. There will be a lot that the doctors won't tell you about what to expect, partly because they don't know because they haven't experienced it themselves. That's why you are here and that's why the rest of us are here. We've been there, done that and can share our experiences with you. Not everything works for everyone, but you will probably get more recommendations here than your docs will give you. So if you have questions or problems, I'm sure someone will have some very good suggestions for you. I wish you the very best and hope that you will continually update us on how you're doing. Take care.

SueRelays
Posts: 489
Joined: Dec 2009

Hey Steve. I can so relate.....they tell us so little, because it's such a rare cancer. I am pretty sure my oncologist had maybe only treated one or two others with this. Frustrating, as even though I did volunteer work at an oncology clinic....NO ONE had anal cancer. There was just no one to talk to and this site didn't exist then. I never want to tell anyone what I had.....Farah cancer didn't sound as bad though!!! I went through all this in 08....unfortunately I just had a liver resection as it came back in abdomen and liver 2 years later. But they just cut out 1/2 of my liver. It is AMAZING what we can go through and come back strong as ever from!
My boyfriend says I have the most expensive ass he's ever had LOL!!!
I drove myself to all my appts until about the last 1-2 weeks. It got pretty hard to walk very far towards the end of treatment. But, all in all.....it was not as bad as my oncologist said it would be.
So glad you found this site so quickly!!!
We're here for YOU~~~

lil lady
Posts: 36
Joined: May 2009

Hi everyone I am so glad I found you wish it had been sooner I was dx in april of 09 with anal cancer I was treated at City of Hope I can't say enough about that wonderful hospital I recieved the usual chemo and radiation it was tough but I have just had my second rectal ultra sound and there is no eviedense of tumor I am still experience bowel problem not everyday but intermitily starts with vomiting the goes into violent diarreha has any body else had this problem I would appreciate hearing about it

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

to the group. Sorry you have to be here, but it is a great group of people to communicate with. I might suggest that you cut and paste your post into a new thread. I am afraid it may not get the attention it deserves in the midst of Larry's post. I know everyone will want the chance to welcome you. Just click where it says "Post New Discussion Topic".

I had some bowel issues, constipation & diarrhea post treatment, but no vomiting. The bowel issues lasted for months and gradually I found my "new norm". I am sure others will jump in to add their comments.

Best regards,
Joanne

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

I learned of the board in January from Joanne but only this week started using it. It is a great opportunity that I wish I had back in the early days of my cancer journey which started with a coloscopy in Dec. 2007 and dx on Jan. 4, 2008. The most significant side effect for me early on was a cycle of diarrhea and constipation. I finished treatment in early March and through early - mid summer carried extra clothing when I went any distance from home. That, thank heavens, has gone by but a much less problematic cycle continues much helped by eating well and a daily regimen of Citrucel or Metamucil or generic thereof. I suggest keeping a daily journal and talk to your doctors about it. Also, for those concerned, my stools were for more than a year, smaller diameter than those of my newborn grandchild!

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Hi Steve
Glad you found this site, sorry that you needed to though. I strongly recommend having someone with you when you go for treatments. In the beginning you may feel like you can handle it and you probably can. But as the treatment progresses I personally think it's a good idea to have someone drive you and be with you. Everyone reacts differently to treatment, but the common thread is that it's not an easy regime.

Wishing you well.
Liz

z's picture
z
Posts: 1250
Joined: May 2009

Steve,

I was diagnosed with Stage II NOMO Anal Cancer on 4-29-09, finished treatment 6-30-09. So far I show NED. Yes I show my bottom to many people. I went to a teaching hospital for treatment and the Dr. has had as many as 2 more fellows (interns) in the examining room along with the nurse. I told my doctor I have no shame. Its good that they were able to surgically remove the cancer. That must mean it was a small enough tumor to get clear margins. I drove myself to treatment. But with your parkinsons combined with the treatment you'll be receiving, I don't know how that will affect you. In the last 2 weeks of treatment I needed the pain meds, so I would take a bath which helped with soothing the area, go get zapped and come home and take a pain med, along with using bag balm (used on cow utters), which was given to me by my radiologist. Keep us posted. I wish you well.

Lori

SueRelays
Posts: 489
Joined: Dec 2009

Hi Larry!

I was diagnosed with this fun little cancer in April 08. Was a stage I, but to the amazement of my docs, it came back and settled on my liver this year. Just had a liver rescetion last week, and am feeling great~ I keep saying it, but it is TOTALLY amazing what your body can go through and come back from. Loved getting that bag off!!! Hope the chemo is not treating you too bad. I did fairly well on the 5FU til the 2nd round.....thought I was pretty tough til then LOL!!! Still never got me completely down. I wish you great repsonse, and isn't it the best to have this discussion board? I have a HUGE Italian family, but no one can truly relate unless you have been through it firsthand. WE ARE HERE FOR YOU!!!!!

larrycimino
Posts: 9
Joined: Feb 2010

Just completely finished every post you have written on this board, and just finished finding out that you're home after the re-section.

Congrats big time !! Looking forward to your help and guidance over the next many weeks/months.

Glad you're home. I'm Sicilian, so I suggest pasta - and lots of it. Grandma told me it cures all ills.

SueRelays
Posts: 489
Joined: Dec 2009

HAHAHA....twice connected then! Heritage and stupid cancer!!!! Pasta is definitely the comfort food that cures all! Just wish to heck I could drink my wine with it!!!!
I can pre warn you that the red sauce will be tough to take by probably the 2nd round of chemo :(....at least it was for me. But hey, all the taste buds came back....and there was a time, I thought they never would~~~

I am more than happy to answer any questions you might have through this....and to support you! I don't have a computer at home ( I know...barbaric)....but have two at my work, so never felt the need to come home and pop back on a computer. Of course, now it's different. I can access Facebook and my Yahoo from my IPhone however, so would be happy to provide those addresses if you feel like you might need a "vent buddy" at times!!!!

Have you accessed the chat rooms at all??? I tried those before this board was started, but just couldn't relate a good portion of the time.

HAPPY FRIDAY!

z's picture
z
Posts: 1250
Joined: May 2009

Hi Larry,

I too was stubborn about getting my so called hemroid checked out, I waited from Oct-08 to Mar-09 to go to the gyno, at that time I was reffered to a gastronologist, then a general surgeon. I was diagnosed with Stage II NOMO Anal Verge Cancer. I completed the standard protocol of 5FU 96 hour drip with 1 mytomicin infusion on week 1, and 5th week of 5FU 96 hour drip, along with 30 radiation zaps. I finished treatment on 6-30-09. All dres, pet-ct, biopsy say NED. I will never be that much in denial again. I've told my family and friends if you think somethings wrong have it checked out. My doctors all told me this is a curable cancer, and so far they are right. Make sure you get the right meds and creams for when you get closer to the end of the rads. Everyone is different. I would take a bath go get zapped, come home and put bag balm (used on cow utters), on my skin. Then the last 2 weeks I used a pain med oxyroc? oxy and tylenol. I only took 4 a day, but was allowed 12 a day. The 4 a day worked fine. Yes please keep us posted on your tx. I wish you well.

Lori

z's picture
z
Posts: 1250
Joined: May 2009

Larry,

I hop between the rare cancer alliance web site and this web site. Google rare cancer alliance, go to the web page and register. It will take about 24 hours to get a log in. There are many anal cancer survivors on the site and lots of good information just like on this site.

Lori

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

Hi Larry--

Yes, you definitely need to check out Rare Cancer Alliance. You can find it with Google. Also, while we're recommending forums here, may I steer you to Blog for a Cure. There are a few males on there among us chicks! I'd be happy to see you on both of those forums in addition to this one.

larrycimino
Posts: 9
Joined: Feb 2010

I'll check out the RCA tomorrow morning. Glad you are recovering nicely lori. I'm looking to knock this out like it was no more than a common cold (at least that's the way my mind works).

As for right now, time to try to watch some Olympics with the knowledge that my better half will be waking me up in an hour, getting me off of my memory foam donut, and putting me to bed.

Night all

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Hi Larry,
Glad you found the site, sorry you needed to find the site. But this is a good support group. As you know, our cancer is rare and there aren't many people that we can connect with. These forums help to fill that gap.

Sounds like you are in good hands. PET, CT and MRI results all sound great. Do you know your tumor size? As you will learn, the radiaiton treatment gets tough towards the finish line. There are creams, sitz bathes, pain supressors, etc. that can be given to you if you need them. In addition to zapping the cancer, radiaiton also zaps our energy. My advice, listen to your body and rest when you feel you need to. It will help.

I finished treatment in 9/09. So far so good. We do have a curable form of cancer. Hearing those words gave me the energy to fight this thing with all that I have. Treatment is not easy, but it will go by fast.

Wishing you healing. Please don't hesitate to reach out with any questions.

Liz

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

My mom was going to name me Larry if I had been a boy. :) My husband calls me that from time to time just for grins. Sorry you had to come looking for this kind of support, but glad you found us. We are relatively new as a group, but as you can see there is a lot of good information and a definite "we got you back" attitude here. I was DX'd in June '08 with SCAC. Ignored the symptoms, was in denial, didn't want to deal with this! Well, deal with it I did.

You will get good advice here for the issues that will present themselves as treatment progresses. I think, if I was going to add anything to the previous information, it would be to drink as much as possible. This will help to flush the toxins from the chemo out of your system. The drugs are hard on your bladder and kidneys and drinking as much water as possible will help. As you get further down the road you may experience some pretty bad diarrhea and BELIEVE ME when I say you do NOT want to get dehydrated. Try to drink fluids that will replace your electrolytes if you experience "as much coming out as is going in". Dehydration was the worst experience of the whole ordeal for me. My husband and my best friend were both doing their best to take good care of me at that point in my journey and I did not share with them how bad the diarrhea was, it became a life threatening situation for me before they realized what was going on. Three days of IV fluids took care of it, but perhaps knowing this beforehand will help you avoid it. I hope that everything moves swiftly for you and that you experience the least possible discomfort. Soon it will all be a not so fond memory!!!
Visit us often.
Regards,
Joanne

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