And So It Begins

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!

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!!!!!

LaCh said:

MattButts

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. 

Good advice!

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.  

Marynb said:

LaCh
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!

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?

MattButts said:

Thrush

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

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 said:

LaCh
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!

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 said:

Martha
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

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.