post radiation pain

adeselle

I've gone through radiation (surgery to remove liposarcoma in right thigh) and ther burns have healed but have major pain now near my incison. Has anyone out there experienced this? If so, what can be done about it

Janey3008

I also had radiation and surgery to remove a liposarcoma from my right thigh. You don't mention how long it's been since your surgery or your last radiation treatment, but I had quite a bit of pain in the area around my incision up to 4-5 months after surgery. I had pre-operative radiation. Even though the incision has healed, the inside may take longer. Even now, a year after the surgery, that area is a little sensitive. Especially when my oncologist decides to poke around there at my checkups. If the pain is really a concern, I'd suggest talking to your oncologist.

Mike99

Sorry to be the bearer of bad news but the Radiation problem you are experiencing mey be a reoccuring thing for a long long time. I had My Radiation therapy 6 years ago and I still experience burn and pain along the incision. I also have to deal with something my doctor has Identified as "Radiation Fibrosis". Every once in a while I get what looks like a Big blotch of sunburn around the Radiation site and I know where the site is because I still have the tattoo's they marked me with which I leave as a reminder (not that I could afford the 125$ each to have them removed). My reccommendation to you is to keep a moisturizer handy and it would not be a bad idea to use it regularly. This will keep the area soft and loose and may hopefully ease some of the aftermath we have to deal with. Contact me if you have any questions.

Michael

adeselle

Janey3008 said:

I also had radiation and surgery to remove a liposarcoma from my right thigh. You don't mention how long it's been since your surgery or your last radiation treatment, but I had quite a bit of pain in the area around my incision up to 4-5 months after surgery. I had pre-operative radiation. Even though the incision has healed, the inside may take longer. Even now, a year after the surgery, that area is a little sensitive. Especially when my oncologist decides to poke around there at my checkups. If the pain is really a concern, I'd suggest talking to your oncologist.

Thanks for responding!! My surgery was in May of this year. My radiation ended in early August. In talking to Mike (Thanks MIke:) he said exercise is the best remedy. I still take about 1600 mg of Motrin a day and 1 vicodin every night. This cannot be healthy! Today I have not taken anything just to see and it's very painful. The area near my incision is VERY hard (only in 1 small area, the incision is 13 inches long) and still very red. I am naturally a very pale person though. I don't really have an oncologist I see. My doctor who I trust immensly is a orthopedic oncologist surgeon. He has looked at myleg a few times after radiation to make sure I didn't have an infection and he thinks that it does not.
It sounds like you are doing very well. I'm glad,

RitaL

Mike99 said:

Sorry to be the bearer of bad news but the Radiation problem you are experiencing mey be a reoccuring thing for a long long time. I had My Radiation therapy 6 years ago and I still experience burn and pain along the incision. I also have to deal with something my doctor has Identified as "Radiation Fibrosis". Every once in a while I get what looks like a Big blotch of sunburn around the Radiation site and I know where the site is because I still have the tattoo's they marked me with which I leave as a reminder (not that I could afford the 125$ each to have them removed). My reccommendation to you is to keep a moisturizer handy and it would not be a bad idea to use it regularly. This will keep the area soft and loose and may hopefully ease some of the aftermath we have to deal with. Contact me if you have any questions.

Michael

Mike, Did you have the muscle removed? I had surgery but did not have any radiation treatment. I was diagnosed with a low grade, mixoid liposarcoma in the right thigh. On 2/10/04, my vastus lateralus was entirely removed in addition to parts of two other muscles. Now my knee is unstable and I use a cane. On 12/3/04 my surgeon checked my knee and incision. He said that he can't do anything to help my knee because he had to remove so much. Now I'm working hard to strengthen the remaining muscles. My goal is to walk without a cane as well as walk up and down stairs. I would appreciate your input. Thank You.

primrose

adeselle said:

Thanks for responding!! My surgery was in May of this year. My radiation ended in early August. In talking to Mike (Thanks MIke:) he said exercise is the best remedy. I still take about 1600 mg of Motrin a day and 1 vicodin every night. This cannot be healthy! Today I have not taken anything just to see and it's very painful. The area near my incision is VERY hard (only in 1 small area, the incision is 13 inches long) and still very red. I am naturally a very pale person though. I don't really have an oncologist I see. My doctor who I trust immensly is a orthopedic oncologist surgeon. He has looked at myleg a few times after radiation to make sure I didn't have an infection and he thinks that it does not.
It sounds like you are doing very well. I'm glad,

This is a very late reply, but I hope it can help you or others with the same problem. I had a mixoid liposarcoma in my right thigh five years ago. The entire semi-membranosous was removed and I had six weeks of radiation. I had very bad radiation burns, which healed after about six weeks after the end of the treatment.

I have been looking (partly successfully) for help treating a bad case of radiation fibrosis which extends from my knee almost up to the top of the thigh. I had some swelling in my thigh and calf as well. So, here are the things I have tried which have helped. First of all, let me say, I live in Germany, although I am an American. I happened to be in the US for the year in 1999 when the tumor was discovered and subsequently treated. In general, rehab for cancer is better here, although one needs to be very pro-active. Manual lymph drainage (I know, it sounds gross, but it is a very gently massage to get the lymph moving - it is often affteced by surgery and radiation) has helped pretty much gotten rid of the swelling, although I have to have it 3 times a week (It'S much cheaper in Germany, and is covered by health insurance. I know it sometimes is in the US, so you should check this out if you decide to go that route). It also feels good. My therapist doesn't just do MLD; he also loosens up the fibrosis. As a result, my leg has gone from being as hard as a brick (really) to being a lot softer. There are still some parts that are hard. The fibrosis seems to have affected the fascia most. My massgae therapist said I should imagine trying to fit a muscle into a very tight sleeve, the sleeve being the fascia that are fibrotic and have thus lost their flexibility.

The other thing I have done is that I have been takin 800 mg of pentoxifyllin and 1000 mg of Vitamin E a day. Studies by a French radiologist have shown this combination can break up fibrotic tissue. In addition, I'm now taking a drug called Bonefos (1600 mg 5 days a week) and prednisone (16 mg 2 days a week). According to this radiologist, Dr Sylvia Delanian (Paris) who I saw in Paris last October, this can cause further reduction of the radiation fibrosis. In some cases it disappeared completely, but almost everybody benefitted. I would certainly ask your docotor about the pentoxifyllin and Vitamin E. It has even been documented in the British and AMerican medical literature, so your radiologist might be familiar with it. The orthopedica oncologist should be, but I have the feeling they focus mostly on dealing with the immediate threat, the cancer. Treating the after-effects of radiation fibrosis didn't seem to be their top priority. I say this because no doctor I talked to knew about these drugs, but five minutes on the internet (type in "treatment radiation fibrosis" into google) called up a number of studies that had been successful.

So, that's what I've been doing. I still take something similar to tylenol with codeine, but the pain has definitely diminished over the years. The worst part for me has been that the radiation fibrosis pushes on the nerves in my leg when I sit on a hard surface. AFter years of trying this and that, my orthopedic doctor suggested I try a wheelchair cushion, one that adjusts when I move. It has been a godsend - I do wish I (or the doctor, for that matter) had thought of that earlier! Being proactive sure beats shrugging my shoulders and giving up, but it can seem like a full-time job! So, this was very long, but I hope helpful.

primrose

Mike99 said:

Sorry to be the bearer of bad news but the Radiation problem you are experiencing mey be a reoccuring thing for a long long time. I had My Radiation therapy 6 years ago and I still experience burn and pain along the incision. I also have to deal with something my doctor has Identified as "Radiation Fibrosis". Every once in a while I get what looks like a Big blotch of sunburn around the Radiation site and I know where the site is because I still have the tattoo's they marked me with which I leave as a reminder (not that I could afford the 125$ each to have them removed). My reccommendation to you is to keep a moisturizer handy and it would not be a bad idea to use it regularly. This will keep the area soft and loose and may hopefully ease some of the aftermath we have to deal with. Contact me if you have any questions.

Michael

I'm just sending you this note since it has been so long since you posted your comment on post radation pain. In the hopes that you are notified if someone replies to you, you might want to look at what I wrote in response to the person you responded to. You might find some of the suggestions helpful. By the way, do you have trouble sitting because of the fibrosis? If so, if you have any other suggestions, I'd love to hear them.

Deidre

kathf

primrose said:

I'm just sending you this note since it has been so long since you posted your comment on post radation pain. In the hopes that you are notified if someone replies to you, you might want to look at what I wrote in response to the person you responded to. You might find some of the suggestions helpful. By the way, do you have trouble sitting because of the fibrosis? If so, if you have any other suggestions, I'd love to hear them.

Deidre

Thanks everyone for the tips. I had surgury 6 months ago for myxoid liposarcoma in the back of my thigh. I have lymphadema. Over the last few days I have started to think I am getting radiation fibrosis. The fibrosis goes away at night when I elevate my leg. Is that typical at first?


Anyway thank you for the hints and posts.

reneesings

kathf said:

Thanks everyone for the tips. I had surgury 6 months ago for myxoid liposarcoma in the back of my thigh. I have lymphadema. Over the last few days I have started to think I am getting radiation fibrosis. The fibrosis goes away at night when I elevate my leg. Is that typical at first?


Anyway thank you for the hints and posts.

I do not believe that fibrosis goes away if you elevate your leg - that is just the swelling from the edema. I have it in both legs (lymphedema), and the leg that went without the radiation is fine, the other one is as hard as a rock - I had my surgery 4 years ago - it has been as hard as a rock since my radiation - not before.

If you have not done so, you need to find a lymphedema physical therapist. They will help you learn how to drain the fluid out of your legs on a daily basis - If you treat it correctly, it should diminish over time and you should be able to do all of the things you used to... YOU MUST TAKE CARE OF IT DAILY. Some days you will feel better than others and you will think it is o.k. to not do the massage - but you must. The lymphedema is still there and still very dangerous. Get fitted for a stocking by a specialist, so that you can fly or stand for long periods of time without swelling. It's uncomfortable and sometimes painful, but way way way better than the consequences, which are long term hospitalization for infections that your body can not fight with normal doses of penicilin.

If you have any questions about my experience, I will be happy to answer.

good luck!

hsreinitz

primrose said:

This is a very late reply, but I hope it can help you or others with the same problem. I had a mixoid liposarcoma in my right thigh five years ago. The entire semi-membranosous was removed and I had six weeks of radiation. I had very bad radiation burns, which healed after about six weeks after the end of the treatment.

I have been looking (partly successfully) for help treating a bad case of radiation fibrosis which extends from my knee almost up to the top of the thigh. I had some swelling in my thigh and calf as well. So, here are the things I have tried which have helped. First of all, let me say, I live in Germany, although I am an American. I happened to be in the US for the year in 1999 when the tumor was discovered and subsequently treated. In general, rehab for cancer is better here, although one needs to be very pro-active. Manual lymph drainage (I know, it sounds gross, but it is a very gently massage to get the lymph moving - it is often affteced by surgery and radiation) has helped pretty much gotten rid of the swelling, although I have to have it 3 times a week (It'S much cheaper in Germany, and is covered by health insurance. I know it sometimes is in the US, so you should check this out if you decide to go that route). It also feels good. My therapist doesn't just do MLD; he also loosens up the fibrosis. As a result, my leg has gone from being as hard as a brick (really) to being a lot softer. There are still some parts that are hard. The fibrosis seems to have affected the fascia most. My massgae therapist said I should imagine trying to fit a muscle into a very tight sleeve, the sleeve being the fascia that are fibrotic and have thus lost their flexibility.

The other thing I have done is that I have been takin 800 mg of pentoxifyllin and 1000 mg of Vitamin E a day. Studies by a French radiologist have shown this combination can break up fibrotic tissue. In addition, I'm now taking a drug called Bonefos (1600 mg 5 days a week) and prednisone (16 mg 2 days a week). According to this radiologist, Dr Sylvia Delanian (Paris) who I saw in Paris last October, this can cause further reduction of the radiation fibrosis. In some cases it disappeared completely, but almost everybody benefitted. I would certainly ask your docotor about the pentoxifyllin and Vitamin E. It has even been documented in the British and AMerican medical literature, so your radiologist might be familiar with it. The orthopedica oncologist should be, but I have the feeling they focus mostly on dealing with the immediate threat, the cancer. Treating the after-effects of radiation fibrosis didn't seem to be their top priority. I say this because no doctor I talked to knew about these drugs, but five minutes on the internet (type in "treatment radiation fibrosis" into google) called up a number of studies that had been successful.

So, that's what I've been doing. I still take something similar to tylenol with codeine, but the pain has definitely diminished over the years. The worst part for me has been that the radiation fibrosis pushes on the nerves in my leg when I sit on a hard surface. AFter years of trying this and that, my orthopedic doctor suggested I try a wheelchair cushion, one that adjusts when I move. It has been a godsend - I do wish I (or the doctor, for that matter) had thought of that earlier! Being proactive sure beats shrugging my shoulders and giving up, but it can seem like a full-time job! So, this was very long, but I hope helpful.

wheelchair cushion
I have had the same experience as you pretty much. I also have a lot of trouble sitting. What kind of wheelchair cushion worked for you. Any help is appreciated.