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danawc88
Posts: 5
Joined: Feb 2013

I am 42 years old and was diagnosed Feb. 20, 2013.  Luckily, I am stage 1.  I would love any input on what to expect.  When did you start feeling really bad?  I will start chemo and radiation March 4 for 6 weeks.  Were you able to continue to work through week 3?  I'm frightened but so so hopeful because of the stage and it's not in my lymph nodes.  I go for PET and CT scans tomorrow. 

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry about yur diagnosis,but glad that they caught it so early and that you came to this site. You will get a lot of good information here. Reaction to treatment varies widely depending on a lot of factors. You are young,and that should help you. Hopefully, you are at a top rated cancer hospital with experts who have a great deal of experience with this rare cancer. I have heard a lot of horror stories that could have been avoided. I am not sure about whether you are able to work. I guess that depends on what you do. I have to tell you that I was 59 wheb treated for stage 2. I did not ever get sick to my stomach and never lost a strand of hair, never needed pain medications. I was very surprised at how doable the treatment was. I did have severe diarreah and fatigue. Also, I had 2 times when my white blood counts got dangerously low and I needed shots to get the count up again. Also, I developed anemia. Overall, I don't think anybody could have been able to tell by looking at me that i was being treated.

You can do this! There are items you should have ahead of time. For me, a handheld shower and loose clothing were essential. Hang in there and have confidence that the cure is just months away!

mp327's picture
mp327
Posts: 3347
Joined: Jan 2010

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.

jcruz
Posts: 328
Joined: Jan 2013

I'm just a little past the newbie stage, 4 months away from treatment and 1 month away from a biopsy that showed no evidence of cancer.  Also still a bit of a newbie to this discussion board.  I lurked a little but didn't really jump into participating until after I finished my treatment.  I think you're wise to join us so early.

I hope you have the good fortune to have caring and knowledgeable nurses.  I got incredible support from the nurses in my infusion center.  I was not treated at a top rated cancer center but I had doctors and nurses well-versed in treating this cancer and in giving care to cancer patients.  

I had already started my medical leave before I started treatment.  Looking back I don't think I could have worked much past the 2nd week.  My nurses put me on regular IV hydration appointments because I simply could not hydrate myself well.  I had thrush which made swallowing difficult and towards the end of treatment I was so sapped even when I could drink all the recommended water it just wasn't enough.  I had a little nausea and no diarrhea but I was incredibly fatigued even in the first week.  I nose-dived after the 2nd round of chemo and near the end of radiation.  Burns, low blood counts, etc.

Ask lots of questions.  Bring someone with you whenever you can.  Ask that person to take notes.  Two sets of ears are better than one.  Repeat your questions when you don't understand.  I wish I'd done that more.  If you can, ask someone elso to schedule people to drive you to appointments.  Being able to turn that chore over to someone else was vital for me.  All I had to do was be dressed and at my front door at pick-up time.

I hope your age and being stage 1 will both be in your favor.  I'll be thinking of you in the weeks to come.  Please let us know how you're doing.

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

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

Laughing

mp327's picture
mp327
Posts: 3347
Joined: Jan 2010

Hey, it's great to see you posting!  It sounds like you are doing pretty well and I'm glad you are having just minor discomfort.  I can imagine the mouth sores would be a pain with the dentures.  Were you able to get any kind of script for some relief?  My doc gave me "Magic Mouthwash."  I hope you can get something to help.  I hope you can get through all of this with minimal issues.  Your attitude will help a lot, so hang on to that!  I wish you all the best!

swordranch's picture
swordranch
Posts: 35
Joined: Feb 2013

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
Posts: 5
Joined: Feb 2013

I wish you luck with your mouth sores.  I've been warned about those.  How long is your treatment plan?

danawc88
Posts: 5
Joined: Feb 2013

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!  

eihtak
Posts: 966
Joined: Oct 2011

Hi, I keep having "technical" issues with my computer/service, but trying to keep up with posts. I just want to say welcome and that we are all here for each other to get through this journey. This site is so helpful in easing anxiety. Somehow it just seems to carry more weight when things you may hear from your medical staff are also reaffirmed by those who have truely been through the same things. I do know of others who have taken Xanax, before, during, and after treatment, but I would be sure to get the ok from doc just so all meds are recorded properly. I'll be thinking of you as you begin on Monday morning, and waiting to hear how your day went.

As always, all in my prayers.

mp327's picture
mp327
Posts: 3347
Joined: Jan 2010

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.

Marynb
Posts: 1134
Joined: Aug 2012

Great news that the cancer is localized. Good luck next week! I would ask the doctor about any medications before you start. Hang in there and enjoy your weekend.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I am starting week 5 and second round of 5FU chemo fanny pack tomorrow.....but no significant hair loss or N&V, lots of gas and some diarrhea, controlled with meds. Skin is ok and I use organic nonfat yoghurt topically in genital area (I am a woman clearly), and a lot of A&D ointment after radiation....keeps irritation in check to stage 1 erythema. Chemo caused a lot of mucositis and I couldn't open mouth for several days. However, best treatment I found was swilling and swallowing baking soda every several hours....and all cleared up. Carmex on lip/mouth sores also helped a lot. MDs were amazed. But I donot know what the next 2 weeks will bring.....shall see....

Kudos to you for getting up before sunrise to get to radiation......that alone would throw me into an anxiety tailspin. When you think about it rationally (not that easy, lol), there is nothing to be anxious about as there is nothing you can really do at this point except educate yourself about the treatment options available. And these are limited, so a lot has to do with trusting the radiation oncologists. Which is why I am at MD Anderson in Houston, TX, having rented an apt 2 miles away from hosp....walking/shuttle distance. All the world-class oncologists are here, so all I can do, at this point, is to go through the treatment and wait the proverbial 3-6 months after completing routine. So, not much anxiety, but a whole lot of fatigue and I spend most days in bed, snoozing. But I also know that I am indulging myself, and feel that I can do so at 63 years old, and all other life plans are being put on hold and undergoing major revision. I am stage 2-3 t3, so 60%-70% resolution probability for 5-yr survival. I found that my anxiety was due to unknown future and inability of influencing course of events. But at this point, even if a colostomy will need to be a future option, I see this cancer as a blessing for giving me the time to reassess what is really most important to me in my life, and what I need to still do to get closure.....good luck.

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Monday I start week 3 of radiation.  I had chemo/radiation combo week 1 and will again week 5. 

The only side effects thus far are fatigue and mouth sores/thrush.  The fatigue is manageable because it has to be.  The sores/thrush are a whole different story.  I have not been able to eat anything solid since a week ago today.  That being said I have been unable to keep myself properly hydrated, even though I try, so had to go in for fluids every day last week.  As of this morning the sores in the front of my mouth are better, as soon as the back of my mouth and throat clear up I will be back on track with fluids. 

I was able to go back to work last Thursday, just 4 hours a day and just doing desk work which is not what I usually do but it was so nice to be able to do something "normal".  At this point I have no reason to believe I will not be able to continue to go to work 4 hours a day.

Sometime between 5am and 5pm Friday every one of my pubs fell out....don't know where which is a little alarming...(hey, watch it!  that isn't a normal tumble weed!).  I have no burns and so far (fingers crossed) not even a slight sensation.  I did have an unusual reaction with my first radiation treatment in that it felt like my rump was on fire.  That passed and hasn't happened again. 

Seems that while almost all of the side effects you will find here are common, they also seem to be quite individualized as far as who will suffer from which side effects.  My plan was to have NO side effects and blow through this treatment.  Although that has not happened I think a good attitude or at least an "and this too shall pass" attitude is helpful.

You will have a great support system with these folks; I was well prepared prior to beginning treatment, from different types of foods to soap to baby wipes the list goes on and on just because of my stalking of this site.  

Best wishes for a smooth and successful treatment for you!

Kris

OMG 1012
Posts: 61
Joined: Dec 2012

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 

 

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