Newbie

I'm very sorry you had to find your way here and I will be thinking of you today as you get your scans.  May they show only the localized tumor and no other issues.  This treatment is totally doable, especially with a little good advice from people who have been there, done that.  I had no support and now realize that I probably contributed to some of my own misery during treatment, but I just did not know how to help myself or deal with some of the side effects.  Despite all that, I made it and am approaching the 4 1/2 year mark of survivorship. 

I would tell you first and foremost to make sure you stay well-hydrated.  Water is critical, especially if, like me, you experience a lot of diarrhea, which severely depletes fluids.  Talk to your doctors and nurses ahead of the beginning of treatment and get things in your arsenal to help with nausea and pain.  When you begin the pain meds, do not stop them because staying ahead of the pain is very important.  Bring any and all issues, no matter how small, up with your doctors or nurses.  During chemo, your immune system is weak and little problems can soon become serious.  Get someone to drive you to your radiation treatments every day, at least once you get to the point where you are uncomfortable.  That will allow you to keep taking the pain meds without fear of being "loopy" and trying to drive, which is what kept me from taking enough pain meds.  Let others who offer help in any way help you, such as with household chores, meals, etc.  People who care about you want to help and be a part of your journey.  Surround yourself with only those people who will be positive and encouraging.  Now is not the time when you want to hear about someone's great aunt who had cancer.  This is your journey and you should be allowed to focus on YOU!

As for when a person starts feeling bad, that is different for everyone.  I was not as fortunate as Marynb and had a lot of problems, which kicked in at the beginning of week 4.  However, as I said above, I had no support from someone who had been through this and I'm sure there are things I could have done to make things easier for myself had I only known.  We are here to help you, so please do not hesitate to come here for suggestions and advice.  Also, venting is quite allowed if you feel the need.  Someone is always here to listen. 

I wish you all the best--please keep us posted.

I am three weeks into treatment right now. I'm having the "combo platter" of chemotherapy and radiation. To be honest, the process hasn't been nearly as traumatic as I anticipated it would be, but then, I'm not all the way through it yet. I still have all of my hair. The only discomfort is a sunburned sensation "where the sun don't shine" and a few mouth sores that are probably made worse by the fact that I wear dentures. Ask your radiation oncologist to prescribe ELAM cream (lidocaine + prilocaine) which can alleviate the sunburned sensation. I guess what I'm trying to say is don't be afraid; it's not as bad as you might have been led to believe, at least it wasn't for me. Most important of all, however, is that you keep your spirits up. Laugh, sing, tell jokes ... it really is the best medicine.

Matt Butts
Diagnosed 3-15-2012

MattButts said:

Welcome to our boat!

I am three weeks into treatment right now. I'm having the "combo platter" of chemotherapy and radiation. To be honest, the process hasn't been nearly as traumatic as I anticipated it would be, but then, I'm not all the way through it yet. I still have all of my hair. The only discomfort is a sunburned sensation "where the sun don't shine" and a few mouth sores that are probably made worse by the fact that I wear dentures. Ask your radiation oncologist to prescribe ELAM cream (lidocaine + prilocaine) which can alleviate the sunburned sensation. I guess what I'm trying to say is don't be afraid; it's not as bad as you might have been led to believe, at least it wasn't for me. Most important of all, however, is that you keep your spirits up. Laugh, sing, tell jokes ... it really is the best medicine.

Matt Butts
Diagnosed 3-15-2012

I am with Matt on this one.  I had no nausea, no hair loss until a month after completion and then it disappeared from my whohaw...never to be found.  The worst problem by far was the diarrhea and the radiation burns but they are temporary and you will get through them.  Mine was rectum, barely. Stage three so went far beyond the first chemo/radiation combo platter.  You will be fine.  I could have worked all the way through the chemo and radiation if I had the availability of a bathroom, loose clothing and could handle the discomfort from the burns and have a bit of a rest now and then.

Good luck, you are one of those stage one lucky ones!  

Laura

danawc88 said:

Update and thanks

Thank you to everyone for the advice. 

I am very blessed that the scans came back and it is only in the one spot.  The doctor said I have enlarged lymph node that looks suspcious but it would killed off with the chemo and radiation.  I've spent more time with the radiation staff so far and really love them.  I start chemo and radiation on Monday.  I got my port yesterday.  Still a little swollen (two incisions) and sore.  Unfortunately, I suffer anxiety and, as you probably know, that is pretty high right now.  I take Xanax when it flares up.  Would any of you take Xanax before your first chemo and radiation treatments?  I have radiation at 7:30 Monday morning and chemo at 8:50.  Wish me luck peeps!  

I'm glad your scans show your tumor is localized and that you have a great radiation staff.  I would definitely ask your doc(s) about taking the Xanax before treatment.  There are some meds that can interfere with the efficacy of the treatment.  The port incisions will only be uncomfortable for a short time and soon you will not notice any pain or swelling.  I wish you all the best on Monday.  Please let us know how it goes.

I was diagnosed after routine hemmy surgery as an almost stage 1 in the middle of Oct last fall

I Had NO idea anything was wrong at all just routine sugery

they said they could argue my diagnosis either way stage 0 or stage 1 but to err on the side of caution and my being middle aged

with no health issues at all

they did decide to do the Rad/Chemo on me but only in the "area" and

not in my groin. (they did give me the option to just "keep an eye on me" but I decided i did not want to live my life if fear of it coming back, I knew they removed

it with the surgery and it was OFF me but I did not want to take any chances, people say this squamous cell is sneaky)

I was able to work throughout my entire treatment part-time between 4 to 6 hrs a day

I started taking 1 stool softener a day (this does not make you GO but makes it easier when you do)

I noticed that at the end of the 1st week of treatment I develeoped the mouth sores (I believe it was on Friday the day I got unhooked, Thanksgiving was the day before and at that point I was still OK, it was rough cooking dinner with that fannypac on but I did it)

(the mouthwash script prescribed to me by the Dr worked very well and I was able to eat again within a few days)

everything went very well the following weeks.

then I started my 2nd round of chemo (week 5) which was the week before Christmas  and was unhooked the Friday before Christmas

and that would have to be the worse part of the whole treatment for me. which would have been on a Christmas night TUESDAY 4 days after they unhooked me from the 2nd round

(trying to give you a time frame here)

I incresed the stool softeners to 2 in the am and 2 at night right before my 2nd round of chemo.

because that was the 2 week period that i knew I would be taking the pain meds (and they can constipate you)

(I do not like to take any sort of pills or medications, and actually at this time the only thing I cam taking is 1 stool sftener in the am, that is IT)

The Dr might tell you to do a soak, the best thing I found was the demboro.  and this is what I did---

(I disolved the demboro in a water bottle and put it into the refrigeator, I took old wash clothes and cut them in 1/2.  

I poured just enough of  cold liquid on the washcloth in a bowl and then applied the cloth to my area making sure to get it into all the

creases.  SO SOOTHING.  get a few old towels to lie on to save your couch and bed from getting wet.  I also dug out a bunch of old TOP sheets

to drape over me, because that week was a time that I did not want clothing touchin me AT ALL!

after I did this I applied silver sulfadene (prescribed by the Dr) make sure to get the BIG jar from the pharmacist mine was the same price either way with my $5 co-pay

Now I dont want to alarm you but it is best to be prepared---the pain everytime I urinated was HORRIBLE

MAKE SURE to drink lots of water to dilute your urine!  (I know this sounds hard to do because then you will have to pee more)

I used a large cup and held it so the urine went into it and did not touch any part of me

(TY Gigi for this tip)  I also urinted in my sitz bath a few times as well--just for relief.  Oh yeah a sitz bath is GREAT to sit and soak in a few times a day

Iused epsom salts in mine.

BUT it still hurt coming out!  This was the time too that I started having painful BM's.

I spent 1 week on the couch and within the week I was up and going again.

ONE other thing is the itching--it drove me NUTS!

I took Banadryl before bed just so I could sleep 

SO all in all, I did very well, I did not miss any work (because my timing was with the holidays)

but if it wasn't I think I probably would have only missed 1 week, 2 tops.

I did have a break in rad for 1 week as I had such bad burns--I finsihed my treatment on Jan 10th

Everyone is different and remember--I did not have RAD to groin area--that makes a HUGE difference in the pain scale of things.

I wish you well---It really wasn't as bad as I thought it would be EXCEPT for that 1 week

PS--I had CT scan last week and ALL is GREAT.

I am waiting on a few more tests but so far so good

Hope I didnt bore you with my info

XO