no longer in limbo

I hope things will progress in a timely manner towards the beginning of your treatment.  As for questions to ask the rad onc, I think it would be good to ask about side-effects and what he/she will be recommending to help with them.  I went into this with very little knowledge and never knew to ask until side effects came on.  If I had been more prepared, perhaps I wouldn't have suffered so much.  I would definitely ask about the possibility of having a vaginal dilator inserted before each treatment to avoid possible vaginal stenosis.  I believe this common practice at MD Anderson.  My rad onc saw me at least once a week for a check of my skin, so I would ask what the protocol is for that.  Please let us know when your appt. is.   

eihtak said:

qv62......

Wishing you well with your upcoming treatment plan.....which at least now you can finally have!!  I agree with the advice that Martha gave regarding vaginal dilators and stenosis. Like many others, I knew very little going in and did not even find this site until months after completeing treatment. Maybe things would have gone exactly the same, but would have welcomed the information so as to be prepared. Some people suffer a great deal with pain/side effects while others barely at all.  I was in horrific pain even before treatment so started immediately on daily pain medication that was increased during treatment and weaned off shortly after.  There is no need to suffer through this, (and maybe you won't), but don't refuse help if needed.......as less stress, comfort, and sleep, will aid in healing.

I remember you had graduation plans in May and June......you may ask what your doctor thinks about starting after the one out of town in May, and then you would still most likely be feeling ok for the one in June.

Please keep us posted, you will be on my mind as you move forward.

katheryn

It sounds bizarre to think that getting to this point is a positive, but compared to what you have gone through for 5 or so years, it seems like it is. As you are aware, all our paths through treatment are different. I was one of the lucky ones & coped well. That's not to say it was painfree, but I found ways to get through it. Going commando, portable bidet using salt water (any of the creams they suggested often aggravated the problem), a hairdryer,  sheepskin, soft wipes to use instead of toilet paper. Thankfully the treatment is of short duration & will soon be in the past. I agree with maybe waiting to start after 1st graduation.

I am sure you will keep us posted, & ask for hints & tips along the way.

I will be thinking of you

Liz

qv62 said:

moving right along

I had my MRI and post-op last week, tomorrow is my first meeting with the chemo doctor and my simulation, I read through the packet they gave me on the chemo/radiation procedures and effects, I  am now getting lots of anxiety as the reality is setting in, however I found the packet very helpful to review so that I am prepared with my questions for tomorrow. One question I am throwing out to you on the board is for those who tried to work during treatment would you recomend treatment in the am and then go to work ? Or go to work and have treatment in the afternoon ? Trying to see what will work best and what the pros and cons of each are ?

I set up my radiation treatments for 3pm in the afternoon. I figured that way if I was tired I'd be able to go right home and rest rather than have to go into work. 3pm also worked well for my husband, who was driving me to the appts, so that he'd have to lose as little time as possible at work. To be honest, I don't remember what time the 2 chemo sessions were set for - I think it was around 1pm, then radiation afterwards.

I was able to work with little or no problems for the first 4 weeks then went down to 20 hrs/week due to fatigue and the onset of the radiation burns. I may have taken a couple of weeks of short term disability after the six weeks were over - can't remember, but I may have.

Best wishes on your upcoming treatments - hope they go smoothly with a few side effects as possible.

qv62 said:

RoseC

Thanks so much for both the well wishes and your input, you mentioned you were able to work without issue for the first four weeks, did you drive yourself to treatment those weeks and then your husband stepped in for weeks 5 & 6 or was he with you from the beginning ? I want to try and drive myself in the beginning, just trying to guesstimate when I'll need someone to take me vs going on my own ? I'm thinking based on your advice I'll schedule treatment for afterwork the first 3 weeks and then maybe switch to earlier in the day so I don't mess up any of my friends schedules since most people have the bewitching hours as I call them before dinner, I know that is always my crazy time with everyone looking to eat.

May 5th is when I got the call I had invasive anal cancer. I have been wondering what has been going on with you and your diagnosis but because of some other issues, had not logged on in a while.

If they waited so long to diagnosis this problem - why the rush into treatment? Why not just wait till the graduation and the proms now?

I had multiple tumors and in my pelvis and had to have surgery first so I didn't start my treatment for anal cancer until late June and I was stage III.

Just a thought.

Hope to get to see you soon.

I vote for the late afternoon. It depends on how the chemo affects you, I would think as to whether or not you can drive yourself to radiation. The first week should not be a problem but the second week may be. Ask for that nice gel in case you get any mouth irritation. It really worked for me.

I am so glad you are finally getting the right treatment.

Fondly,

Sandy

qv62 said:

Rosec

Thanks for the response, I'll let you know how I make out

I was exhausted in my first week of chemo radiotherapy.  I would fall asleep mid conversation, so I could neither have worked nor driven. I didn't work during this time anyway to protect myself from infection, but if you could do some work from home........  (the nature of my work doesn't lend itself to working from home, but some do). I could have driven myself to & from treatment sessions, but my hubby & daughter insisted on being as helpful as they could. I didn't have mitoycin included in my second round of chemo & wasn't so exhausted, but by then my skin was uncomfortable with radiation burns, so being dropped off outside treatment centre so that they could park up was my best option. 

qv62 said:

RoseC

Thanks so much for both the well wishes and your input, you mentioned you were able to work without issue for the first four weeks, did you drive yourself to treatment those weeks and then your husband stepped in for weeks 5 & 6 or was he with you from the beginning ? I want to try and drive myself in the beginning, just trying to guesstimate when I'll need someone to take me vs going on my own ? I'm thinking based on your advice I'll schedule treatment for afterwork the first 3 weeks and then maybe switch to earlier in the day so I don't mess up any of my friends schedules since most people have the bewitching hours as I call them before dinner, I know that is always my crazy time with everyone looking to eat.

I was severly anemiac and in pain when diagnosed. I had colostomy surgery and received iron infusions before beginning treatment so I did not work. That being said, I still drove to treatment once healed from surgery but only for a couple weeks. I had some minor complications with the effects of radiation on the ostomy and was then hospitalized.

I will have you in my thoughts and prayers that your health/work/family schedules all join forces to work together.

Be well.......

katheryn

qv62 said:

moving foward

I had my simulation appt on Monday as well as my meeting with the chemo doctor, must say I have been so focused on the side effects of the radiation I wasn't expecdted to be so blown away by the chemo consultation but I was, it took me till yesterday to comprehend all the info, the oncologist is writing me out of work from day 1 since I work with young children (strept throat, fiths disease, chicken pox etc) they will be doing both chemos on day one of radiation and I will start on 5/20, have my dry run on the 19th, closer it gets the more absent minded I am becoming. I didn't expect to leave with a script for a "cranium prosthesis" is this standard ?

I felt very overwhelmed after my meeting with the chemo nurse prior to treatment.  It seemed I left there with enough information to fill a library.  But a little focus on the high points and I felt much better.  I think your oncologist is wise to keep you out of work, due to the exposure to who knows what.  Small children are petri dishes for germs.  You will be vulnerable to such things, so this is in your best interest. 

I've never heard of a cranium prosthesis, but after a lookup, it sounds like a medical term for a wig.  You may experience some hair loss with this chemotherapy, but rarely does anyone lose all of their hair.  I probably lost about half of my hair in patches all over my scalp.  I chose not to go with a wig and just wore a ballcap when I went out in public.  My hair usually looks terrible anyway!    However, for some people, especially women, hair loss can be quite traumatic.  If that's you and your insurance will pay for a wig, then it's definitely a consideration.

I wish you all the best on the 20th. and will have you in my thoughts and prayers.  You will get through this and we are here to do our part to make sure that happens!  Gift yourself with something special this weekend, whether it's an activity or time with a friend.  Take care!

qv62 said:

moving foward

I had my simulation appt on Monday as well as my meeting with the chemo doctor, must say I have been so focused on the side effects of the radiation I wasn't expecdted to be so blown away by the chemo consultation but I was, it took me till yesterday to comprehend all the info, the oncologist is writing me out of work from day 1 since I work with young children (strept throat, fiths disease, chicken pox etc) they will be doing both chemos on day one of radiation and I will start on 5/20, have my dry run on the 19th, closer it gets the more absent minded I am becoming. I didn't expect to leave with a script for a "cranium prosthesis" is this standard ?

Some of the best advice I received was to take one day at a time.  It's great to be prepared but not everyone reacts the same and you may have to wait and see what happens and react as needed at the time. 

I did not work from the time of my surgery until about 3-4 weeks after the last treatment.  I was fortunate to be able to take the time off and get paid.  I did not want to be in a workplace full of cooties (I begin treatments at the end of Jan. 2013.) By the end, I was napping after my radiation session.  I also had constant diarrhea too that would have prevented my from working.  I'm glad I was able to be off and just concentrate on healing.

The "cranium prosthesis" script is great.  I got a free wig from the American Cancer Society before I lost any hair.  When the time came to use it didn't fit or look right and I wanted to buy one.  The shop I went to told my if I had a script, it'd help defray the cost ($500 plus).  I ended up not getting the wig after talking to a lot of people I was afraid I wouldn't wear it.  I did lose a lot of hair (I bet 3/4 of it) but my hairdresser was able to work with it get me through that period (I refused to shave my head.)

It is a lot to digest.  You know more than I did going into this because I didn't find this board until after I finished treatments.

Sending positive thoughts and prayers you way,

Tracey