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Radiation

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

I have read many of the stories throughout the discussion board and it seems everyone I have read states that people had between 2 weeks to 6 weeks radiation treatment. Did any of you have 12 weeks of treatment? I started my treatments towards the end of March and those treatments continued to the end of June. 5 days a week, 4 sides(front, back, and both left and right) each time. I had what was considered to be a new chemo treatment through this also. I don't remember how many times I had the chemo. I just remember the put the port in and left it in until I was done with all the treatments(chemo and radiation). Let's just say, the radiation doctor and his nurse gave me a certificate when I completed treatment because they said they rarely give someone as much radiation treatments as I had.
It all just makes me curious as to how much radiation everyone had because here I am 3 years out from when I began my treatments with medical difficulties still and I am only 44 years old. I know my doctors told me I was the worst they had ever seen of someone with cancer and still up and moving on my own, and they were going to use my tumor to help teach others, etc. (my tumor was approximately 14" long and varied between 1" and 3" around).
Anyhow, I still have bleeding issues, pelvic pain problems, and digestion issues. Among other things. They told me I have radiation proctitus and that it takes 10 years to clear out of the body, and sometimes never does.
The doctors and I were able to figure out that the reason I lost most of my hair was because of a drop in vitamin B. (the chemo treatment I had was supposed to let me keep my hair). It is just now after all this time starting to come in as thick as it used to be, but it is still not quite as thick).
The main reason I am asking this of everyone is because I still have problems getting around...Standing is so difficult still and walking for more than a short distance is out of the question also. I hate that we have to look for the closest spot to drop me off now so I can get to where I need to be. When I go somewhere I am not only scoping out for the locations of the bathrooms because of the problems I still have but for closest places for me to sit down if need be(which usually is not too long off). I do dishes, sweep the floor, etc, all from a sitting position or in sections if I have to stand. (that way I can clean an area, sit down and give my body a break before I go back and do it again). The pain can be so intense at times, and my doctor just tells me to take an aspirin now, cause he doesn't want me to rely on pain meds. (even though I weened myself off of pain meds within 5 weeks after all my treatments stopped). How much pain meds did the doctors have me on? 260 mg of oxycodone once a day, 60 mg of oxycodone every 4-6 hours, 20 mg, of flexeril twice a day, 30 mg oxycotin twice a day....I think that is all of them...there were so many and it has been a while.
Yes, I have taken PT also. Many times...it has helped, but it doesn't resolve all the problems.

z's picture
z
Posts: 1249
Joined: May 2009

Hello, Wow 12 weeks of tx, I had 30 radiation zaps and 2 cycles of chemo at 1 week at a time of the 5FU drip. On the 1st chemo infusion I had myto 1 tx. I had a 2.5 cm tumor. It sounds like yours was large and maybe thats why all the extra tx. I had IMRT, which I would imagine you did too. I'm wondering if your tx lasted longer with less radiation each tx, because of the size of the tumor. Now I completed tx 6-30-09, and I am basically back to normal. I see your tx was 3 years ago, and your still having bad issues. All I can say is keep trying with the PT until your better. I wish you well. Lori

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

Yes, I had the 5FU chemo treatment also. I was so drugged up at the time, that I kept a folder with everything in it so I would know later what all was done to me. No it wasn't less radiation each time. It was the same...after a while though they had to change the angle of each side though from the burns I was getting. Same area, just had to come at it from a different angle. I recieved it on all four side though throughout the whole time. I just thought that everyone recieved this much radiation with anal cancer. I assumed when people kept leaving the radiation area that they had just switched times, as I met many different people throughout the radiation in the waiting area. I think though that they realized it was getting to me and started having me wait in my wheelchair in my own separate area(about the last month I recieved services). I saw a little girl going in, and that put a lot into prospective for me. Watching her go through what we as adults were facing. I met people that had throat cancer, breast cancer, bone cancer, prostate cancer, and many of their caregivers too. They took time to show my husband what they were doing to me...He got to watch the radiation going into me from the control room. They also explained why it took me longer than others in the radiation room...such as a breast cancer person will get radiation shot at them from one or two angles, a person with throat or brain cancer has to wear a helmet that is made specifically for them, and it helps them to gauge where to hit them with the radiation, etc.It took 10-14 minutes to get my radiation treatments every time. Most of that was setting up to ensure they were hitting were the radiation doctor wanted it hit. I guess I should go back and read my blog that I kept back then for our family that lived far My tumor was half in me and half out of me. I knew something was wrong for over 6 months before I went to the doctor, then spent almost another five months with the doctor telling me it was one thing or another before I saw a different doctor that sent me straight to the hospital, and got me admitted. (I had been to two other hospitals before...one said there was nothing wrong with me(never physically looked), the other told me their policies would not let them admit me cause I did not meet their qualifications). I was told I had the cancer for at least three years before I finally got help.
Anyhow thanks everyone for responding. My treatments started in March of 2008 and continued until end of June 2008. My first cancer was simple...I just had to have surgery to remove...all done...this cancer left so much behind even though the cancer is gone.

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

I have a hard time with my mobility, and have used canes on many occasions, and while going through the precedures I had to use a wheelchair once for an event we had to go to. I am not wanting to go into a wheelchair, but I think I may be fighting a losing battle with my body. It is even hard to stand in the shower long enough to wash. And sitting in the tub is nice for just relaxing, not washing, but getting out of the tub is so difficult.
I am so happy and satisfied with every aspect of my life except for the restroom issues I still have, and the mobility. I am thinking I just need to keep counting my blessings. I have a wonderful family that has supported me through all of this and has been by my side. My children are both grown now, and making their own way in life, and I am so proud of them and happy for them. (my youngest just graduated and is on her way to college this fall, and my oldest married the girl of his dreams last year).

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I've never ran across anyone on my 3 forums whose tumor was as big as yours. I have a feeling that's the reason your treatment was different than others'. That was quite a large tumor. I'm sorry you are dealing with so many long-term side effects. My thoughts and prayers are with you.

melbas2
Posts: 108
Joined: Aug 2010

Worden, I am so sorry that you are going thru this...I thought I was the only one. My tx ended in Sept 2010 and my mobility has dropped a BUNCH. I too have to do chores in bits & pieces and only from a sitting position. There are certain things I can't do like mopping, vaccuuming and cooking. I can do boxed or canned dinners, but I can't stand in there and cut and chop and mix. My poor husband. I was on the road ffor 12 years for work, and now that I'm home, I'm useless. I've started using a walker, and am thinking about getting a scooter. I just turned 50 this month and I'm tired all the time, and if I walk from my bedrrom to the washer & dryer, which if about 15 or 20 feet, I'm worn out. I haven't started PT yet, my oncologist is setting that up for me. I try to walk every day but it is gruelling. If I'd known the radiation would cause these effects, I probally wouldn't have done it. I will keep you in my thoughts and prayers and hope it gets easier for you. Hugs, Melodie

Captain11
Posts: 88
Joined: Apr 2011

Hi, Worden... I am so sorry for all the troubles you are having... and the long, long radiation... I had it on the sides and front, and never switched angles. They told me my tumor was about 9 centimeters. Try to keep up with the exercises. I did just some very minor stretching and leg lifts, only a few a day to begin with. My hips hurt so bad that I couldn't lay on my side for the side leg lifts, but I could do them laying on my back. I tried the pool therapy, which helps a lot. Also, continue to take the relaxing baths. I had trouble getting in and out of the tub, until I learned to sit on the tub and rotate my body around then swing my legs in and sit down. I had to hold on so that I didn't fall. Install hand rails in the shower, if you don't have them already. I had to use my arm strength to lift my self out of the tub. Now I am able to get in from my right side and maneuver around to face the shower head. I also take my shower with my husband so that he can help me if I start to lose my balance, especially when I close my eyes. I too look for the bathrooms and only go into the stores where there are the public restrooms. I use a cane when I am out, but not while I am at home. The cane is sometimes more trouble than not. I walk around pushing the shopping cart as my means of support. You might want to try a walker, before completely going to a wheelchair. I know that the more I sit the more stiff I get. I am able to cook and do things around the house...bending over is not as easy, nor is sitting on the floor, or having to reach for something in the lower cabinets. Getting up is hard. I always have a solid object around me to use as leverage when getting up. I am trying to get into a squat position and force my thighs to do the work of getting me up to a standing position. I have several bar stools in my kitchen, one by the counter where I cut vegetables, etc, and one by my sink. They are both in reach so that if I am cooking something on the stove, I can rest. You may be having a balance problem, like me, which is why I can't stand very long. Your body has a lot to do just recuperating, without having a center of gravity issue. I got better in time. I finished my radiation in Sept 2009, but had to go through 6 months of another chemo, cysplatin infusions, 120 continuous hours of chemo infusion every 3 weeks. I am 60 years old, and very small build. I couldn't do the chemo every 3 weeks due to total fatigue and very low blood counts. I continued to lose weight so, I asked my onc if he could lower the dosage somehow or spread the treatments out, because, I wasn't making it this way. He listened to my concerns and agreed. My 4th, 5th and 6th treatments were 4 weeks apart. I felt much more receptive. You may have to be a little more patient with your progress than those of us with the 6 weeks of radiation, with seeing any results. I am sure you will start to loosen up soon. Rely on those around you. Make a to-do list and when people say "call me if you need anything" just hand them the list and have them pick things out to help you with. I don't take any pain meds. If I need anything I take a couple tylenol. I am a tea drinker, maybe a cup of raspberry tea will help. Also, for your digestion problems, try chamomile tea. It does wonders for me. Drink plenty of fruit juice, but make sure you dilute it with water, as juice can cause diarhea. I usually drink 1 part juice to 1 part water. I still have bleeding issues and fecal urgency issues- - no matter how I regulate my diet... I am either urgent in the morning and don't leave the house before 10 am, or I'm plagued at 2pm, or sometimes at 8 pm. I am sure time will straighten all that out too. Are you taking vitamin D?? That might help, too. I hope I have given you some hope, some ideas, and some support. I wish you all the best. You made it through very difficult odds. Keep the faith and a positive attitude. God bless. Captain

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