Treatment Started

maggiesco

Hi.

I started treatment yesterday and everything went well. There was an issue with my alignment at radiation, so I had to get re-alignmed and come back a few hours later for treatment. In between that time, I had my first round (of 2) of Mitomycen chemo IV. (I'm also taking chemo pills on the same days as radiation). But I feel fine so far, and just glad that I'm fighting this cancer and ready to get it out of me! 

I know side effects will hit me soon, so I'm sure I'll be posting for advice.

Positive Vibes,

Maggie

eihtak

maggiesco...

Hi,

Glad to hear you made it through day one with only a minor glitch in the schedule. Its been almost 7 years for me now since that first day and I'll admit that some of the details have become a blur. (Thats probably a good thing) 

Some people experience only minimal side effects and others a great deal...I will pray you are in the first group. No matter what, fluids are important to flush the chemicals through your body, so drink, drink, drink, as much as you can. I did get to a point where even water was difficult for me, but found that watermelon went down great. I tried to keep cut up chuncks in the fridge and just nibble throughout the day!

With each day you are one day closer to the finish line and we will all be along the route cheering each other on!

katheryn

 

 

mp327

Maggie

I'm glad your first day of treatment is over.  It is a scary day to be sure, not knowing what to expect.  May all following days go smooth for you.  If side effects do present themselves, please share--there's always someone here who experience the same thing and can give you some possible tips on managing the issue.  Take care.

caholz33

Counting Down the Days!

Good for you Maggie!  So happy you don't have to have the awful 5FU week long fanny pack (although I know you'll still have the side effects).  I was wondering about the Mitomycen... yep, I remember that IV is only about an hour or so?   Do not push yourself, even though the first couple weeks aren't too bad.  Rest and reserve all your strength.  You ROCK!

maggiesco

thanks

Thanks for the support! I'm ready for this pesky tumor to be zapped, it makes sitting a bit uncomfortable and I can't poop- it just feels like I have to. (one step at a time--eye on the prize)

maggiesco

caholz33 said:

Counting Down the Days!

Good for you Maggie!  So happy you don't have to have the awful 5FU week long fanny pack (although I know you'll still have the side effects).  I was wondering about the Mitomycen... yep, I remember that IV is only about an hour or so?   Do not push yourself, even though the first couple weeks aren't too bad.  Rest and reserve all your strength.  You ROCK!

caholz33

Thanks! Yep, the IV is about 90 minutes. I'm trying to take it easy, the tumor is still bothering me (its only day 2); no pain just uncomfortable. But I know there is light at the end of the tunnel and with each day I'm progressing towards it! Hugs!

tanda

maggiesco

So, you are off to a good start and working with a very good team.

As you know, everyone experiences side effects in a slightly different way. I also had capecetabine/Xeloda (5/FU in pill form)  I eventually lost my appetite; however,

I DID NOT get mouth sores, didn't need  magic mouthwash and could have eaten more if I had had an appetite. I think this is a mjor advantage of a pill and it is also more convenient.

 

eihtak

maggiesco...

Hi,

Thinking about your statement of sitting being uncomfortable brought back that same memory to me. Ouch! I remember usually folding my one leg under me to create sort of a donut and take pressure off of the tumor site. At one point it was so bad that I fell asleep kneeling next to my bed with my head on a pillow because even laying down was painful. 

It also reminded me of how I got relief (from that part of it) not too long after treatment started. I did however trade that pain for the new pain assosciated with radiation burns. PLEASE do not hesitate to ask your doctor for pain medication. This is not the time in life to "tough it out"...I was on a regular dose of timed release oxycontin with oxycodone for break through pain by the middle of my treatment. Not long into recovery, I was easily weaned off these meds and have not needed since. Good to note though, that pain meds can cause constipation (not wanted at this time) so I also took a daily stool softener.

I hope your weekend is restful...

katheryn

maggiesco

pain meds

The pressure from the tumor was too uncomfortable that I ended up calling my doctors office and got a prescription for pain meds on Friday. Since then, I also took 3 stool softeners -but none today- Ive probably been to the toilet every 20 minutes the past 2 days while awake.  Not much of an appetite either, trying to stay hydrated and snack on small stuff.  

eihtak

maggiesco said:

pain meds

The pressure from the tumor was too uncomfortable that I ended up calling my doctors office and got a prescription for pain meds on Friday. Since then, I also took 3 stool softeners -but none today- Ive probably been to the toilet every 20 minutes the past 2 days while awake.  Not much of an appetite either, trying to stay hydrated and snack on small stuff.  

maggiesco...

Hi,

I'm so sorry that you were (are in such pain) but also glad you called to get a prescription. As I said, sometimes once things go on, the pain is a trade off of one kind for another so don't hesitate to get the dosage increased. It was explained to me the importance of staying ahead of the pain if you can rather than trying to get rid of it once it gets too bad. Also, the pain meds may help you sleep and sleep is needed for healing. 

As others have mentioned, my appetite took a dive as well. I tried to keep yogurt on hand and just take a spoonful every once in a while, nibble on crakers, and keep my watermelon handy. Now and then I had a craving for grilled cheese and tomato soup so called that a good day. A glass of ice cold chocolate milk seemed to quench my dry throat too!

We just remodeled our bathroom this past fall and I love it...I told my daughter that I sure wish it looked like that 7 years ago since it seemed I was living there!

Hope your evening goes well....

katheryn

mp327

Maggie

I would recommend taking the pain meds to keep ahead of the pain.  I did not do that and suffered way more than I should have.  Eat whatever you can--whatever sounds good to you or tastes good.  Be sure to stay well-hydrated.

Mollymaude

Maggie

I agree with katheryn that it didn't take too long for the tumor to shrink and that pain to let up (for sure by end of week 2), then there was a period of not much pain, then the radiation burns kick in during the last couple weeks. Don't skimp on the pain meds, just like others have said. 

0626june

Maggie

I had the exact same treatment you are having and I'm 3 1/2 years post-treatment and my PETscans come back with No Evidence of Disease!  They staged mine at 3-B because lymph nodes were involved.  I'm so glad you found your way here... these people were an amazing resource for me and we're here to help you. I found there was nothing I could ask them about that they didn't have a ready answer and lots of support.  Let's face it, talking about our bum is not something we generally do with, say, the mailman or neighbor.  You can do this!!!

Ohmy

I had a CT scan half way

I had a CT scan half way through treatment and the doctor told me my tumor was shrinking.  My PET scan three months post treatment was NED.  I took my pain medication during treatment and I used Milk of Magnesia a couple of times a week for constipation.  I think I only used Immodium once for diarrhea.

maggiesco

0626june said:

Maggie

I had the exact same treatment you are having and I'm 3 1/2 years post-treatment and my PETscans come back with No Evidence of Disease!  They staged mine at 3-B because lymph nodes were involved.  I'm so glad you found your way here... these people were an amazing resource for me and we're here to help you. I found there was nothing I could ask them about that they didn't have a ready answer and lots of support.  Let's face it, talking about our bum is not something we generally do with, say, the mailman or neighbor.  You can do this!!!

0626june

Congrats on 3 1/2 years with NED!!! That is major and so awesome   I agree, this is a greate resource, and so glad I could find others that could relate to what I'm going through. 

Positive Vibes!!

Scubajoe

Hey Maggie,

Hey Maggie,

I just went through 30 days of radiation and two weeks of the fanny pack for chemotherapy. At the beginning I think my tumor was about 1 inch.  I did not have a lot of side effects to the skin I did have some skin degradation But be sure to use plenty of the Aquaphor before the skin starts to degrade. I did not have any side effects from the chemotherapy. After the 30 days of radiation I would say the worst pain was experienced about two weeks to the day after the end of radiation. I am currently 4 weeks out.  My biggest thing right now is fatigue from the radiation as well as radiation enteritis which is kind of an inflammation of your intestines that that screw up your digestive system for a bit. I am not sure how long but from what I read online things say up to eight weeks maybe for acute enteritis. Feel free to reach out if you have any questions I can help with

caholz33

Checking In

Thinking of you Maggie, hope you are doing okay ... must be close to halfway mark.  I remember I purchased and hung up two big Dry Erase calendars (I wanted to see them both throughout the two months my treatment spanned across, instead of erasing halfway) and filled them in with every treatment and dr's appt.  First thing in each morning I put a big black X over the previous day.  No matter how the day had gone, I got to see it become accomplished.   This is the first time I'm remembering this and maybe I should post it as an idea for newbies here. But even without visual aids I hope you are feeling a sense of progress!  XOXO

Mollymaude

I like that idea

about the dry erase boards! It really does drive home the fact you got through one more day!

maggiesco

halfway mark

today is my halfway mark, 3 more weeks and i'm looking forward to success! i'm still managing the fatigute, pain and constipation, and i'm always in the bathroom. i'm getting plenty of rest, but I try to stretch, and move my body with gentle leg and arm excercises..  thanks for the support everyone, it means everything.

mp327

maggiesco

Congrats on reaching the halfway mark.  You are doing great!  I know you are anxious to cross the finish line--and soon you will!  Keep moving forward.

Mollymaude

Maggie

You can do it! Thinking of you today.