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And So It Begins

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

For the most part, I have been just sitting back and "lurking" on here. I was first diagnosed with anal cancer on 3/15/2012. At first they thought they got it surgically, but to paraphrase Nietzsche, "That which does not kill me grows back and tries again."

I started chemotherapy and radiation therapy today. I'm getting mytomycin and 5-FU (I wonder how many of you have the same obscene nickname for the stuff that I do?) and so far no nasty side effects. So what should I expect? I'd love to hear any "home remedies" you might know of for the side effects.

Just don't wish me luck; wish me success instead. Laughing

Matt Butts (Heckuva name for an anal CA pt, isn't it?)

 

mp327's picture
mp327
Posts: 3396
Joined: Jan 2010

I'm very sorry to hear that you cancer returned, but you are on the right track for kicking the beast to the curb.  It will not be fun and as you are anticipating, there will be some side effects.  At the first hint of any, come here and tell us--we'll help in whatever way we can.  The main thing to keep in mind is the importance of staying hydrated throughout this treatment.  Also, try to include protein in your meals and snacks to aid healing.  Bring up any issues, no matter how minor they may seem, to your doctors, as your immune system will be down and little things can suddenly turn into big ones.  You will get through this, believe me, you will.  So many of us have done it and we understand the challenges.  Please keep us posted so we can help you.  I wish you SUCCESS!

RoseC's picture
RoseC
Posts: 540
Joined: Jun 2011

I'm so sorry the surgery didn't get rid of the beast.

The things I remember early on in the treatment are mouth sores (after the first round of chemo - they've got a mouthwash that'll get rid of them) and anxiety (my oncologist gave me a prescription for Xanax, which helped a lot - had never taken anything like that before, but it helped relieve the dark feelings). Until the end of week four, those were the only issues I had. With a little tiredness creeping in. After that the burns started showing up - lots of sitz baths and aquafour. 

I know men have different issues than women - hopefully one of the guys will chime in with man-specific information.

Please feel free to ask anything and everything. Wishing you all the best.

 

Rose

 

eihtak
Posts: 1016
Joined: Oct 2011

I will start with wishing you a truely successful recovery after a problem free treatment. It seems as though we have welcomed way too many people to this group in the recent months. I hope word is just out that the site is of great support, and not that this cancer is becoming less rare. At any rate, we are here for each other to help when ever needed. Side effects are different for all but many things are also common.  As said, stay hydrated and get as much nutrition as possible right now because your appetite will probably take a nose dive later on. I did not have mouth sores but got extremely dry mouth and a thirst that was unquenchable....I sucked on frozen fruit bars constantly. Eventually the burns were my (and for most) number one issue. There are a number of creams and ointments, what works for one may not for others. I used a spray called Dermoplast, but not till done with radiation treatments. I tried Aquaphor a couple times during but did not get much relief and was worried about getting it washed off before each treatment (very important). I was also on a pain management program that helped tremendously. Some people manage just fine without, but I don't know how I could have. ( My tumor was quite large, Stage3b with pelvic node) Most side effects do not show up immediately, and some not at all, so take things a day at a time, and we will be here to help you as you go. Again, wishing you only SUCCESS!!!!!

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

I've heard sucking on ice cubes really helps the dry mouth.

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

A little extra backstory here: my immune system is already compromised, because I have AIDS. I'm basically sequestering myself away from the rest of the world. I only leave the house when I need to, like for doctor appointments or when I need groceries. Mouth sores don't sound like fun, but I have the additional remedy there of just taking my teeth out. (I wear total dentures.)

So far I am feeling very optimistic and hopeful. That could change as the side effects begin to show up.

LaCh
Posts: 558
Joined: Dec 2012

Hey MattButts,

I don't have a wealth of info, just a few things from my own experience. I'm a week and a few days post treatment so I'm not that far ahead of you. A few things that I found: 1) What doesn't help today, may help tomorrow so don't hesitate to return to things that didn't work before; the physical changes occur rapidly over time so the solutions also must change. 2) Like you, I use this forum for info and it's been immeasurably helpful and continues to be, but if you find that your emotions, beliefs, problems or solutions aren't those of the majority, don't sweat it.  Improvise, experiement and use this forum as a springboard and starting point. There will always be similarities and there will always be differences in your experience. A good example is the spectrum of responses to the chemo; some have a litany of difficult side effects, some have very few. I'm extremely sensitive to all pharmaceuticals and anticipated being flatened by the mitomycin and 5FU (yes, we all have that choice name for it) but I had almost no side effects from the chemo (well, my hair is still falling out and I had very low blood counts but the latter has resolved). People will tell you almost without exception that of the two, chemo or radiation the radiation is the most difficult and carries the most problems; I agree.  It's a bi**h.  Because of my aversion to taking meds (strange, from someone who just submitted to one of the harshest treatments ever dreamed up by western medicine) I was reluctant to take pain meds.  My own experience has been that that was a mistake; I'm a week post treatment and started pain meds in the beginning of the 5th week of (so I'm in week three of taking oxycodone) and still take it; it does nothing for the internal pain that I have when I go to the bathroom and doesn't do much more than take the edge off the external burns but I'll take what I can get. But remember, some get burns, some people don't, some who get them, get them early on, some people get them towards the end of treatment). Similarities and differences, that defines this experience. If you find that you need painkillers, also load up on stool softeners.  Oxycodone constipates. Stay ahead of the pain (take it on scedule.) I didn't, thinking that I'd take it when I felt that I needed it and that was a mistake too. It's better to stay ahead of it because catching up to it is difficult.  As for being HIV positive and concerns about your immune system, do whatever you can think of to stay away from sources of illness.  Sounds self-evident, I know, but I was concerned about infuenza and pertussis; I wore a facemask everywhere I went and all my doctors laughed at me and told me that I didn't need it; I said, "Yes, I know," and continued doing what I felt was in my best interests. I live in NYC and stayed out of the subway, off busses when I could and generally away from crowds. I forbade people from coming over if they felt even the first hint of a headcold. I washed my hands as often as I could.  The usual things that they say to do but taken to an extreme.  The last thing you want is a secondary infection with an already compromised immune system. You're your own best advocate and your own best gatekeeper. Do whatever you feel is in your best interests, regardless of what seems appropriate to anyone else.  I'm a poor dispenser of platitudes; "you can do this," and "stay positive" are better left to others; I'm just not good at that.  But find support wherever you can, from whomever you can, here or elsewhere.  Stay close, literally and figuratively to those who bring you good energy and distance yourself from those who take it away.  You're the center of this maelstrom right now, and your needs are paramount.  I understand the desire to lurk; I'm a seeker of anonimity and invisibility myself, but don't do it to the point of eliminating good sources of help.  That's my advice and I don't often dispense any.  Stay in touch. 

eihtak
Posts: 1016
Joined: Oct 2011

Good advice!

Marynb
Posts: 1134
Joined: Aug 2012

It sounds like you are feeling just a bit better! That makes me happy! Are you ready for the big blizzard? Make sure you have everything you need. They say we could get a foot of snow! Batten down the hatches.

LaCh
Posts: 558
Joined: Dec 2012

Feeling a bit better yes, with the combination of oxycodone, aquaphor and a resignation to being in a constant state of pain. Whether that resignation is good or bad, who knows. The burns are somewhat better but internal pain is unchanged and I pop stool softeners in huge quantities which makes me poop water.  Even that isn't even close to pain free but doesn't require the screaming towel over the mouth, so I guess that's a good thing.   As for the snow...  where are you located again?   In NYC it'll be an inconvenient mess, nothing more, I don't think.  I'm neither ready nor un-ready because there's not much for me to do really. My car has been parked upstate with relatives since just before treatments began because I knew that parking it would be impossible and that I had to get it off the street.  The snow will turn black and oily after the first few hours, and then flood the intersections.  That's how NYC snow is.  I think that New England in general and in particular, Connecticut and the Boston area will be hard hit, maybe my Massachusettes cousin and my upstate relatives as well.  I don't think we'll have anything of any real impact here, but who knows.  Maybe I'm wrong.  The only real relief that I've found from pain (oxycodone helps only minimally) are massages by a Sloan Kettering therapist who works exclusively with cancer patients. My only snow-related concern is that my Saturday massage appointment might be in jeopardy and since it truly does offer the only relief I can get, I hope it doesn't get cancelled. Aside from that, the impact on me will be minimal, I think. But yes, I'm starting to feel a little more human. The fatigue is pretty intense though; can't seem to shake it.  Also, since I can't sit, any time I want to use the computer, I have to stand and can't do that for very long periods of time.  I decided to take the easy way out and sent my laundry out to a service although it bothered me to do that; it cost twice what I would have paid to do it myself and although they received it at 7 this morning, it won't be done till 5 this afternoon.  Who knows, maybe they're going to take it to the river and beat it on the rocks or something, otherwise, I can't imagine why it takes 10 hours to do a load of laundry.  But when I really thought about it, doing it myself was too daunting....there was no way.... My motto is "take the path of least resistance...."  and so I'm just going to continue to hibernate.  

Marynb
Posts: 1134
Joined: Aug 2012

Hi Matt,

I wish you great success in beating this! You can do this! I liked that the chemo was called 5FU.....and that is just how I feel about cancer. 5FU!
To prevent mouth sores, rinse with a salt water solution at least 3 times a day. Good oral hygiene is important in staving off the sores.
I found a hand held shower necessary and so soothing. Be very careful about using soaps and lotions on the area to be radiated. Any residue will make the burns worse. I did not use any lotions and used only Dove for sensitive skin cleanser. The hospital said it is the only evidence based body wash to use. A sitz bath will come in handy to soak. Hydrate and eat extra protein. Each morning when I woke up, I had to eat plain cinnamon toast to prevent nausea.
From the sounds of it, you have faced many adversities in life and that strength that you have will get you through this!

jcruz
Posts: 343
Joined: Jan 2013

Hi Matt

I have also been mostly a lurker on this site until recently and found comfort just knowing that others who faced this disease and treatment were here and talking to each other.  I am now about 3 1/2 months post-treatment and only in the last few weeks have I felt that I might be returning to a "normal" me.  I sincerely hope for you and others a swifter recovery than I have had.

In terms of taking care of yourself, if you have the time, take all the hydration appointments you can.  There was no way that I could hydrate myself well enough to overcome the effects of the chemo and radiation.  If you develop mouth pain, rinse with a salt/baking soda mouthwash but also get someone in your dr's office to look for thrush.  I had it after both rounds of chemo and took fluconazole.  Because it hurts so much to swallow then I had a very difficult time eating and drinking.  Every morning I made myself a smoothie with frozen fruit, greek yogurt and whey protein just to be sure I was getting a good amount of protein in me.  Lots of sitz baths.  Aquapor compounded with lidocaine was helpful when the burns started to hurt.  I did not hesitate to take oxycontin around the clock along with oxycodone for breakthrough pain.  I spent most of the 7 weeks of treatment alone except for seeing my friends when they picked me up for my treatment appts.  Oh yeah, except also for week 5 when I had to pack my house and move - I had relatives and movers in my house for a few days.  It was crazy to move in the middle of everything but the new place I'm renting was way too good to pass up.  At first I felt pretty okay and had to consciously make myself rest but I got over that pretty quickly and all I could do was rest.  Mostly I just wanted to stay in bed but I also found I could sit/slouch on my couch after I got a waffle cushion to make it more comfortable.  

I'll be thinking about you and I do wish you success.  

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

Thrush is common in HIV patients. I keep a supply of fluconisone (the treatment) handy at all times.

pamela_preib's picture
pamela_preib
Posts: 55
Joined: Nov 2012

I was very careful thru my first round of chemo.  Sucked on ice chips during the drip and used the baking soda and salt water remedy about four times a day.  Didn't have an issue at all the first go round.  The 2nd go round I wasn't so careful and bam, ended up with sores on top of my tongue and on the bottom.  Talk about painful. So be diligent about those rinses.  Here's to your success...

Marynb
Posts: 1134
Joined: Aug 2012

Good for you for sending out the laundry and getting help with that. I remember lying naked from the waist down on large beach towels placed on the bed. Letting the air circulate as much as possible around the radiated area helped me. I am keeping an eye on the weather. We lose power at the slightest storm, so I am off to stock up on peanut butter and rice crackers. I hope you are right about NYC.

I hope you heal quickly now and that the worst of it is behind you.(no pun intended). Hang in there!

LaCh
Posts: 558
Joined: Dec 2012

yeah, my poor cuz in Massachusettes is getting ready too as a power loss there is almost a guarantee.  I've got friends in Boston and I think that they're really in for a rough time.  NYC has nothing to do except do a collective (and unnecessary) hand wringing. It's what we do (some of us) and especially when the weather people whip us up into a frenzy, which they seem to love doing.  I'm not even thinking about it.  I worked outdoors for 11 years, year round, and that was a different story entirely, nothing I'd want to repeat, but these days, I can hibernate if I want (especially since I don't have to move the car for alternate side parking regulations). All I have to do is walk my dog and (hopefully) keep my massage appointment on Saturday.   I'm starting to feel more human and as soon as I can walk normally (when the external burns are healed) I'm going to start going to a gym that I have free access to through my health insurance, just to do some easy walking on the treadmill to start.  Where do you live?

Marynb
Posts: 1134
Joined: Aug 2012

They are saying 24 inches! I will lose power for sure, which means no heat! Oh, well. I just hope it doesn't last long. It is beautiful where I live. Right on the water, so I love to watch the snow come down.....but I don't enjoy eating peanut butter in the cold for days! But, being a good girl scout, I am so ready!

mp327's picture
mp327
Posts: 3396
Joined: Jan 2010

May you weather the storm just fine.  Do you have a fireplace?  I lived in the Midwest and we had a terrible ice storm one year, resulting in no power for almost a week.  We slept in front of our fireplace every night.  It was fun for the first couple of nights!

Marynb
Posts: 1134
Joined: Aug 2012

I do have a fireplace......but no wood. It was so crazy here today, you can't imagine. The grocery store was packed and out of everything. The gas stations had long lines, and I could find no wood anywhere. I may have to go out and chop down a tree tomorrow.....lol. It is really going to be bad if we get 3 feet of snow. We lose power at the slightest rain storm. Good old National Grid.
See, everyone has their breaking point. Cancer...no problem. Cancer again, no problem. Take away my creature comforts and I go a little nuts! Being cold and alone in the dark for days with an old cat really puts me over the edge! Lol

LaCh
Posts: 558
Joined: Dec 2012

yeah, they've increased the estimates for totals to NYC and are now saying a foot or so. Boston, three. My cousin in Massachusettes, the same. The outter boroughs in NYC that have power lines above ground will have problems that Manhattan won't (power cables are all buried here.) That said, it'll be an inconvenient mess here too but nothing like it'll be for other places. For my part, when we get these kinds of weather events, my first thought is "Thank god I don't work outside any more."  THAT was hell. Funny how different we all are; being stuck inside with my dog sounds like heaven to me. Of course, the difference is that I'll have heat and lights; an important difference.   The thing about blizzards in NYC, especially Manhattan that's defined by chaos and noise, is that everything stops, everything grows quiet and surly people suddenly grow smiles.  It's beautiful, at least for a few hours.  

mp327's picture
mp327
Posts: 3396
Joined: Jan 2010

Here's hoping the predictions are wrong and it turns out not to be such a big storm. 

We don't like to use them (and don't need them because we have a gas fireplace) but those Duraflame logs do put out some heat and will burn for about 3 hours, perhaps long enough to warm you up a bit.  No doubt those things are flying off the shelves up there, but if you can find some they would be better than nothing.  I will worry about you!  I am not a fan of being cold and actually hate winter, even here in the south! 

We used to live in the Pacific NW and had frequent wind storms, which would often take out our power.  We soon learned that almost everyone in our neighborhood owned a portable generator and why.  When the power would go out, our street sounded like a construction zone with all the generators running.  My husband broke down and bought one and I don't think we had one long-lasting power outage after that.  The only time I remember using the thing was one evening when we were getting ready to go to a party and the power went out just as I stepped out of the shower with wet hair.  Hubby fired the thing up to power my blow dryer!  Laughing

 

 

Marynb
Posts: 1134
Joined: Aug 2012

Oh, thanks, Martha. No need to worry about me. I am a New Englander and we are a hardy stock! LaCh, I don't mind curling up with a good book and my cat, but if I have no power.....it gets a little cold and creepy! I am heading out to find some firewood!

sephie's picture
sephie
Posts: 580
Joined: Apr 2009

hey,  send us a photo of your cat if you can....Lach send us a photo of your dog if you can.... it always puts a smile on our faces to see the animals......   hope ya'll are warm and comfy at home...... sephie

islandgirlculebra's picture
islandgirlculebra
Posts: 143
Joined: Dec 2012

I posted a picture of me with my baby; hope it will show up when I send you this message. If not I didn't do it right..........

sephie's picture
sephie
Posts: 580
Joined: Apr 2009

so precious!!!!  thx for posting ....beautiful!!!!     sephie

mp327's picture
mp327
Posts: 3396
Joined: Jan 2010

You look great and what a beautiful fur baby!

RoseC's picture
RoseC
Posts: 540
Joined: Jun 2011

These are my kitties - Bogart (black and white), Mulligan (yellow tabby), and Gushtil (I know, weird name - my beloved gray tabby). Mulligan's the only one still with us - Bogart and Gushtil are gone but they were both real sweeties.

Matt, we kinda hijacked your thread - please don't feel it was intentional - pets sometimes do that to folks. Smile

How're you doing, Matt?

 

islandgirlculebra's picture
islandgirlculebra
Posts: 143
Joined: Dec 2012

Love the picture of your kitties. I think anytime we can look at our fur babies it brings a smile to all our faces and I loved Sephe's idea of sharing pictures of them............

islandgirlculebra's picture
islandgirlculebra
Posts: 143
Joined: Dec 2012

Thanks......Actually I must admit the picture was from 5 years ago, before the trauma of cancer, but was the only picture I could find of me and "Beaut" together that was half decent...... Still not really liking pictures of me with the pixie type haircut I now have (my chemo cut I call it). But as we all know, hair is not the most important issue in the world at this point. Smile

Marynb
Posts: 1134
Joined: Aug 2012

I have no idea how to send a picture! My cat is not quite as adorable as yours, but has the same coloring!

sephie's picture
sephie
Posts: 580
Joined: Apr 2009

i do not know how either....my hubby had to do this photo.... i did not want the photo to be of just me so i added my precious cat... she is a rescue from the shelter and was 6 years when i got her 2 years ago.   she is a fancy lady persian but very very sweet and is not a snob at all even tho she looks sooooo fancy...... also,, in case ya'll have not figured it out ,  sephie  is not my real name but was one of my other cats..... my name is so unique that when i first subscribed to this site in 2009, it was advised not to place too much identifying info.....not sure if it really matters now or not , cause i talk to any and everyone about anal cancer.......    hope you stay warm      .....

islandgirlculebra's picture
islandgirlculebra
Posts: 143
Joined: Dec 2012

You and your cat are BOTH adorable.....

sephie's picture
sephie
Posts: 580
Joined: Apr 2009

we all need  complements and i appreciate it.... my butt still does not feel adorable but i am still here and trying to live as normal as possible.... hugs,,,sephie

sephie's picture
sephie
Posts: 580
Joined: Apr 2009

thinking of you and yes.  i did get off the subject with the pet photos.... so please do not think it is because i do not want to help you with the beating cancer in the butt project..... i am not very computer savy and just type in what i think of with out changing subjects.....  I hate that yours returned.... but the chemo (same i had) and the radiation will kill it.....   so hugs to  you.....sephie

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