radiation-chemo
Comments
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Dear Roxy,
Welcome to the board. You have come to a good place. This is probably going to be the most scary time of your entire treatment. The not knowing what to expect nearly made me crazy. This board has helped me get through my treatment and still helps post treatment. First, do you know what stage your cancer is?? Where is it located?? Have you had a PET/CT scan?? Mine was stage III rectal cancer, I was diagnosed on September 18, 2006.
Take one step at a time. This is going to be a process. I assume you are doing the 28 treatments of radiation and chemo (5-FU). The first couple of appointments will be radiation planning. They will probably do a CT scan and will process all the information to come up with a plan. They will make a mold of your legs so you will be in the same position every treatment. Before treatment begins the will do a simulation to make sure everything is lined up. For me they did not give me tatoos, but used sharpie markers and drew all over my backside to line me up. You will have to be careful not to wash off these marks (no tub baths). You will probably see the radiation oncologist once a week. They will weigh you and take your blood. They also will check your skin for burns and breakdown. The actual radiation treatments were not that bad for me. I was able to work. I scheduled my appointment for 4pm everyday so I could work, have treatment, then go home and rest. At first you probably won't feel any different. The actual treatment once you are on the table only takes a couple of minutes. You only get a short burst of radiation each day. For me it was 20 seconds on my backside, then 10 seconds on my front pelvic area. About 3 weeks into treatment I started to notice I was getting a lot more tired. I also started to get a sunburned look on my abdomen. The burns did get worse. Talk to your oncologist if this happens. They can prescribe some creams that will help. A lot of patients get diarrhea. I never had that problem. Bladder irritation can also occur. Again I never had that, but I have heard it feels like a urinary tract infection. The worst part of treatment is towards the end going to the bathroom got very painful. Not to be graphic, but it felt like I was trying to pass razor blades. If you experience this get on pain medication. I took Lortab around the clock for the last 2 weeks and then another 2 weeks after finishing. Don't be afraid to control your pain. You don't need to suffer. The pain started to slowly subside after a couple weeks. The chemo part of it required me to wear a 24 hour/7 day pump. This took some getting used to. Are you getting a port??? I highly recommend one. Assuming you are female I went and bought a cute Coach bag to keep my pump in. I wore the bag across my body and fed the tubing underneath my clothing. I work as a pharmacist and none of my customers even realized I was getting chemo. I would lay the pump beside me in bed to sleep. The only negative is I couldn't shower with the pump and couldn't take baths because of the sharpie marks. My solution was to buy a bath stool and get the hose attachments for the tub. That way I could wash my hair and rinse myself off good.
I recovered for 8 weeks then had a bowel resection, with a hysterectomy and permanent colostomy done. After that I did 4 more months of chemo. I don't want to bombard you with too much information. You are going to have a long journey. We have all been there. It took about 10 months to finish my treatment. In September I found out I was NED!!!
This is going to be tough. Keep a positive attitude, but know that you are allowed to be upset, cry, curse, and have a bad day. Dig down deep and know that you have strength that you never imagined. You will get through. Pray everyday and give thanks for the most simple things. Know that we are all here for you. If you would like to talk or have specific questions please feel free to email me. I could go on and on...
I'll keep you in my prayers.
Kiersten0 -
Hi and welcome , of course I'm sorry it's under these circumstances. Kirsten gave you some real valuable info and not much that I can add, except to say that everyones' experience is a little different because people are all different. A positive attitude can help a lot , asking questions can be of tremendous help and researching can prove invaluable, as long as you don't "take to heart" everything you read as some information is old and there have been lots of advances in drugs, etc. Come here often for support. No question is too "simple" to ask . It would probably be helpful to you in giving a little more information to all like if you've had any surgery, is any being considered, stage etc.? Sending you good thoughts and keeping you in my prayers. God Bless and remember to take one day at a time.
Diane0 -
Hi, Sorry you are here, but welcome....I read Kiersten's response and could almost say "ditto"..she and I have a lot in common. I was diagnosed stage III rectal cancer 10/12/06 age 33. I will just add a couple of things...I have found that there are some differences depending on where in the country you are from...doing research like this will help A LOT. I wish I had found this site sooner. I would recommend bringing another person with you, if possible, to take notes. Also, feel free to make lists of questions to bring with you and ask the MD, in case you have trouble concentrating during the actual visit. It helped me feel a little more in control. Don't be afraid to get some other opinions along the way, if the doctor doesn't "click" with you, ask around, your relationship with the doctor and the staff at the clinic is very important to keeping a positive outlook. I was fortunate to have wonderful doc's and nurses. Remember, we are all here for you along the way. YOU CAN DO THIS!!!! You are stronger than you ever thought possible!!! Every step along the way brings new challenges, and successes. Feel free to contact me any time. Any little bit of help that I could give, to make your experience a bit less difficult I would do in a heart beat. WE ALL GOT THROUGH THIS AND SO WILL YOU!! Try to stay positive and don't be afraid to ask for help! One doctor explained treatment like a hockey game...divided into thirds First chemo. and radiation, Second, surgery, Finally chemo., it's alot to look at all at once, but breaking it down helps...One day at a time and eventually it will be all over!0
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I echo the 'everyone is different'. It's better to go into this realizing this is only a stage, there will be an end...and go from there.
My example: I had pre-surgical chemo (Oxylaplatin and 5FU) and radiation. Then a bowel resection. That's it. No post-surgical chemo (unless you count the chemo 6 months later to attack the primary-site breast cancer...lol).
Everything that was removed had NO cancer in it...the chemo/rads did the deed...started with a 2cm tumor in my first rectal fold. NO colostomy (outside bag redirecting the stool), not even temporary.
I agree, make sure you click with your treatment team. You need to have confidence in them, and your treatment.
Also...please, please, please take someone with you to take notes at doctor's appts...trust me, you WILL forget something, not hear something, or just get a warm fuzzy from having a 'treatment partner'.
Welcome to the group....you can ask anything here....including questions about frequency, color, size...lol!
Hugs, kathi
(3 years post-dx, stage III rectal cancer....NED-No Evidence of Disease.....working toward 5 years NED, cured!)0 -
Welcome to the Board although we would rather no one had to be a new member. I had rectal cancer which was felt to be Stage 2. My oncologist recommended chemoradiation and I got started within the following two days. I had read beforehand and agreed as I had hoped it would make it so I wouldn't need a colostomy. However, the cancer recurred and I ended up with the colostomy anyway. At the time of the second, major, surgery the lymph nodes were not too helpful in determining the stage as the radiation had shrunk many so they were only able to identify 8. Ideally, one gets a better idea of prognosis if about 20 lymph nodes can be examined.
I'm not saying don't do the chemo/radiation. Just see multiple oncologists for an opinion and get the benefits of each oncologist's recommendation and the potential problems as well. I definitely recommend getting a port for the chemo. It makes it easier. Having the pump is bothersome but you will be able to get past it. I was able to get an IV pole to hang the pump on outside of the shower which really helped.
Feel free to ask as many questions as you can. Look up as much as you can. I recommend looking at the website of the National Cancer Institute (www.cancer.gov) which has alot of information on staging and treatment. It is a scary time and it changes your perspective of life. While your life may be different than you had imagined several years ago it can be no less enjoyable and may be more appreciated, at least it has been for me.
****0 -
Hi,
I'm sorry you have to deal with this disease but this site is great for information. I am Stage 4 and had 6 weeks of radiation and 5FU chemo to shrink my tumor before surgery. I had no problems with the radiation and only had one small spot that started to get sore towards the end of my treatments. I used a salve that the nurse gave me and it healed quickly. I got somewhat tired but other than that, it went smoothly. I hope your treatments are easy for you, I will keep you in my thoughts and prayers. Audrey0 -
****,vinny3 said:Welcome to the Board although we would rather no one had to be a new member. I had rectal cancer which was felt to be Stage 2. My oncologist recommended chemoradiation and I got started within the following two days. I had read beforehand and agreed as I had hoped it would make it so I wouldn't need a colostomy. However, the cancer recurred and I ended up with the colostomy anyway. At the time of the second, major, surgery the lymph nodes were not too helpful in determining the stage as the radiation had shrunk many so they were only able to identify 8. Ideally, one gets a better idea of prognosis if about 20 lymph nodes can be examined.
I'm not saying don't do the chemo/radiation. Just see multiple oncologists for an opinion and get the benefits of each oncologist's recommendation and the potential problems as well. I definitely recommend getting a port for the chemo. It makes it easier. Having the pump is bothersome but you will be able to get past it. I was able to get an IV pole to hang the pump on outside of the shower which really helped.
Feel free to ask as many questions as you can. Look up as much as you can. I recommend looking at the website of the National Cancer Institute (www.cancer.gov) which has alot of information on staging and treatment. It is a scary time and it changes your perspective of life. While your life may be different than you had imagined several years ago it can be no less enjoyable and may be more appreciated, at least it has been for me.
****
Great idea about the IV pole. Also agree with the second opinions. So glad that I got mine. My first Surgeon wanted to surgery immediately. He said there was no need for prior chemo and radiation, CT/PET scan, or even additional bloodwork. Glad I switched. My outcome could have been a lot different.
I always appreciate reading your advice. You are so full of knowledge and a great reference.
Kiersten0 -
Kiersten, thank you for your post. I'm brand new at having Chemo and radiation too and had no idea what to expect. Even if I ask every question I can think of there's still more that I hadn't even thought of and you answered a lot of those. Thank you for your honesty and encouragement!KierstenRx said:Dear Roxy,
Welcome to the board. You have come to a good place. This is probably going to be the most scary time of your entire treatment. The not knowing what to expect nearly made me crazy. This board has helped me get through my treatment and still helps post treatment. First, do you know what stage your cancer is?? Where is it located?? Have you had a PET/CT scan?? Mine was stage III rectal cancer, I was diagnosed on September 18, 2006.
Take one step at a time. This is going to be a process. I assume you are doing the 28 treatments of radiation and chemo (5-FU). The first couple of appointments will be radiation planning. They will probably do a CT scan and will process all the information to come up with a plan. They will make a mold of your legs so you will be in the same position every treatment. Before treatment begins the will do a simulation to make sure everything is lined up. For me they did not give me tatoos, but used sharpie markers and drew all over my backside to line me up. You will have to be careful not to wash off these marks (no tub baths). You will probably see the radiation oncologist once a week. They will weigh you and take your blood. They also will check your skin for burns and breakdown. The actual radiation treatments were not that bad for me. I was able to work. I scheduled my appointment for 4pm everyday so I could work, have treatment, then go home and rest. At first you probably won't feel any different. The actual treatment once you are on the table only takes a couple of minutes. You only get a short burst of radiation each day. For me it was 20 seconds on my backside, then 10 seconds on my front pelvic area. About 3 weeks into treatment I started to notice I was getting a lot more tired. I also started to get a sunburned look on my abdomen. The burns did get worse. Talk to your oncologist if this happens. They can prescribe some creams that will help. A lot of patients get diarrhea. I never had that problem. Bladder irritation can also occur. Again I never had that, but I have heard it feels like a urinary tract infection. The worst part of treatment is towards the end going to the bathroom got very painful. Not to be graphic, but it felt like I was trying to pass razor blades. If you experience this get on pain medication. I took Lortab around the clock for the last 2 weeks and then another 2 weeks after finishing. Don't be afraid to control your pain. You don't need to suffer. The pain started to slowly subside after a couple weeks. The chemo part of it required me to wear a 24 hour/7 day pump. This took some getting used to. Are you getting a port??? I highly recommend one. Assuming you are female I went and bought a cute Coach bag to keep my pump in. I wore the bag across my body and fed the tubing underneath my clothing. I work as a pharmacist and none of my customers even realized I was getting chemo. I would lay the pump beside me in bed to sleep. The only negative is I couldn't shower with the pump and couldn't take baths because of the sharpie marks. My solution was to buy a bath stool and get the hose attachments for the tub. That way I could wash my hair and rinse myself off good.
I recovered for 8 weeks then had a bowel resection, with a hysterectomy and permanent colostomy done. After that I did 4 more months of chemo. I don't want to bombard you with too much information. You are going to have a long journey. We have all been there. It took about 10 months to finish my treatment. In September I found out I was NED!!!
This is going to be tough. Keep a positive attitude, but know that you are allowed to be upset, cry, curse, and have a bad day. Dig down deep and know that you have strength that you never imagined. You will get through. Pray everyday and give thanks for the most simple things. Know that we are all here for you. If you would like to talk or have specific questions please feel free to email me. I could go on and on...
I'll keep you in my prayers.
Kiersten
Jorie0 -
Hi Roxy!
DOH! I'm having a really bad memory day...I think my memory was removed with my tumor. I posted my reply to you under Char's above post so if you don't mind scrolling up, it's actually for you. I'd blame it on a comuter glitch but it's actually addressed to Char and meant for you. Rest assured this isn't a symptom! LOL
Anyway, welcome to our group, you've found a fantastic support group and a network of friends. Another thing that I might add to my previous reply is to go through the profiles and find people who's surgery was in the same place as yours. I've been able to message these people and ask specific questions and get answers about recovery processes that pertain more to me than a general over view. For instance my surgery was very very low and I had different recovery problems than someone who had surgery higher up and I was able to find out some resources for my specific problems. This group is a great place to be!
Jorie0 -
Please feel free to ask us any questions. I would always ask if something was normal. The veterans here would always say that no two people are alike and what I was experiencing was normal to me. I still have questions and probably always will. This is a great board. The knowledge here is truly amazing. Feel free to email me anytime. I will always be honest and direct about my experience, although yours may be totally differentMoonDragon said:Kiersten, thank you for your post. I'm brand new at having Chemo and radiation too and had no idea what to expect. Even if I ask every question I can think of there's still more that I hadn't even thought of and you answered a lot of those. Thank you for your honesty and encouragement!
Jorie
Kiersten0
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