radation experiences needed

Forums General Melanoma Community radation experiences needed

  • Post
    triciad
    Participant

      Hi Everyone,

      It's me again.  I just had surgery to remove an intransit from by buttock area.  This puts me now at 3C.  My oncologist wants me to do a little radiation to that area.  He says it's painless and hopefully will kill any cells left behind…on my behind…ha ha.  He also said it would not exclude me from any treatments in the future. 

      Hi Everyone,

      It's me again.  I just had surgery to remove an intransit from by buttock area.  This puts me now at 3C.  My oncologist wants me to do a little radiation to that area.  He says it's painless and hopefully will kill any cells left behind…on my behind…ha ha.  He also said it would not exclude me from any treatments in the future. 

      I have an appointment next Wednesday with the radiologist, but I was hoping some of you could share some advice or experiences with localized radiation.  How many zap sessions are usually involved?

      Thanks for all of your help!

      Tricia

    Viewing 11 reply threads
    • Replies
        RMcLegal
        Participant

          Tricia, I'm an eight year survivor of Stage IIIC melanoma.  I had a series of targeted radiation treatments to treat a non-melanoma tumor (a schwannoma) next to my cervical spine that was first discovered after my melanoma diagnosis.  Initially, the radiation oncologist talked about 25 treatments (5 days a week for 5 weeks) but we settled on doing the equivalent dosage of radiation in only 5 treatments (he called 5X5).  I had some pain from tumor swelling and a bit of fatigue and skin burning (like a sunburn), but overall it was quite easy compared to surgery and chemotherapy.  There seems to be a lot of variation in how patients react to radiation treatments, and that sounds like a tough location if you experience any skin irritation.  Best wishes to you.

          Rich

          http://www.hotelmelanoma.blogspot.com

          RMcLegal
          Participant

            Tricia, I'm an eight year survivor of Stage IIIC melanoma.  I had a series of targeted radiation treatments to treat a non-melanoma tumor (a schwannoma) next to my cervical spine that was first discovered after my melanoma diagnosis.  Initially, the radiation oncologist talked about 25 treatments (5 days a week for 5 weeks) but we settled on doing the equivalent dosage of radiation in only 5 treatments (he called 5X5).  I had some pain from tumor swelling and a bit of fatigue and skin burning (like a sunburn), but overall it was quite easy compared to surgery and chemotherapy.  There seems to be a lot of variation in how patients react to radiation treatments, and that sounds like a tough location if you experience any skin irritation.  Best wishes to you.

            Rich

            http://www.hotelmelanoma.blogspot.com

              Vermont_Donna
              Participant

                Hi Tricia,

                I have had targeted radiation twice (to my right leg, different areas), and the treatments were daily, five days a week for 27 treatments the first time and 30 the second. My first round turned out rough….had a lot of pain the last week, and second degree radiation burns, resulting in a 5 day hospitalization for cellulitis, wound care and pain control (not the usual results but I have some leg issues), and the second round was smooth sailing. I have had reoccurences after both rounds of radiation….in transit mets. But dont let my expereince deter you. Radiation is a good treatment. It is quite the workup for determining your course of radiation treatment also….not like just going in for xrays….completely different. I loved my radiation oncologist and treatment team, they were fantastic!

                Vermont_Donna, stage 3a, NED

                Vermont_Donna
                Participant

                  Hi Tricia,

                  I have had targeted radiation twice (to my right leg, different areas), and the treatments were daily, five days a week for 27 treatments the first time and 30 the second. My first round turned out rough….had a lot of pain the last week, and second degree radiation burns, resulting in a 5 day hospitalization for cellulitis, wound care and pain control (not the usual results but I have some leg issues), and the second round was smooth sailing. I have had reoccurences after both rounds of radiation….in transit mets. But dont let my expereince deter you. Radiation is a good treatment. It is quite the workup for determining your course of radiation treatment also….not like just going in for xrays….completely different. I loved my radiation oncologist and treatment team, they were fantastic!

                  Vermont_Donna, stage 3a, NED

                  lhaley
                  Participant

                    Donna,

                    Did they use a bolus on you?  My radiation was stopped after4 treatments when they thought I had a recurrance (started up again now). After about 3 additional days off the treatment I started blistering and getting puffy!  The radiologist didn't see it since I was off for 2 weeks and didn't want to belive it.  In the end she removed the bolus part of the treatment stating that I must be very sensitive to the sun.  DUH!  I'm a redhead with fair skin! 

                    Linda

                    lhaley
                    Participant

                      Donna,

                      Did they use a bolus on you?  My radiation was stopped after4 treatments when they thought I had a recurrance (started up again now). After about 3 additional days off the treatment I started blistering and getting puffy!  The radiologist didn't see it since I was off for 2 weeks and didn't want to belive it.  In the end she removed the bolus part of the treatment stating that I must be very sensitive to the sun.  DUH!  I'm a redhead with fair skin! 

                      Linda

                      Vermont_Donna
                      Participant

                        Hi Linda,

                          Yes I had bolus's used both times, to target the several places where we knew the intransits were…me too, while I am nor red haired, I have hazel eyes, and type two diabetes and those two darn unhealed wounds on my leg so all in all my leg was a mess. Now, one wound has healed, finally and the other one (14 and 1/2 months old) is almost healed over too……its been a very long process for me!

                        Thanks for asking!

                        Vermont_Donna

                        ps. for those who dont know what a bolus is…its is a rubbery like ring or patch they put over the area they want to target….in addition to the area that is being radiated

                        Vermont_Donna
                        Participant

                          Hi Linda,

                            Yes I had bolus's used both times, to target the several places where we knew the intransits were…me too, while I am nor red haired, I have hazel eyes, and type two diabetes and those two darn unhealed wounds on my leg so all in all my leg was a mess. Now, one wound has healed, finally and the other one (14 and 1/2 months old) is almost healed over too……its been a very long process for me!

                          Thanks for asking!

                          Vermont_Donna

                          ps. for those who dont know what a bolus is…its is a rubbery like ring or patch they put over the area they want to target….in addition to the area that is being radiated

                          triciad
                          Participant

                            Donna,

                            Thanks for your reply and sharing your experiences with me.  I'm nervous about the unknown, and I know I will feel a lot better after meeting with the radiologist and find out what the game plan is going to be.  I hope I like him as much as you liked yours!  Thanks again for your help…knowledge is power.  Best wishes to you!!!

                            Tricia

                            triciad
                            Participant

                              Donna,

                              Thanks for your reply and sharing your experiences with me.  I'm nervous about the unknown, and I know I will feel a lot better after meeting with the radiologist and find out what the game plan is going to be.  I hope I like him as much as you liked yours!  Thanks again for your help…knowledge is power.  Best wishes to you!!!

                              Tricia

                              triciad
                              Participant

                                Rich,

                                Thanks so much for your very inspiring reply!  Congratulations on your 8 year status…I hope to have a similar experience.  Also, I like the shortened version of radiation.  I'll see what the doctor says about that.  Thanks again for making me more optimistic today!!!

                                Tricia

                                triciad
                                Participant

                                  Rich,

                                  Thanks so much for your very inspiring reply!  Congratulations on your 8 year status…I hope to have a similar experience.  Also, I like the shortened version of radiation.  I'll see what the doctor says about that.  Thanks again for making me more optimistic today!!!

                                  Tricia

                                lhaley
                                Participant

                                  Tricia,

                                  I've just finished day 7 treatment out of 23.  I was very impressed with my consult in Charlotte with statistics and their knowledge. However, I couldn't do the treatment there because of the round trip 5 hour drive and the amount of days.  The radiologist contacted someone local and they talked.  It went down from there.

                                  I just don't feel comfortable in this facility but I feel leaving mid treatment would be a mistake. They originally told me that they were adding a bolus to "protect" my skin. What they meant was it would enhance the skin area and I guess make sure that any cells along the skin would be killed.  My Charlotte Dr told me I would only have some slight reddining. The internet says the bolus basically guarantees blisters.  I haven't figured out yet if this Dr did it on her own.  When I went back to start up the treatments again I said something to her and she took it out of thetreatment plan. Makes me think this was her addition. I could have contacted CHarlotte and asked but when she removed it I didn't bother.

                                  Mine was stopped for 2 weeks while we dealt with what was thought to be a recurrance. Biopsy showed fatty tissue!  Have now had 7 treatments. My underarm near the elbow joint – is getting very sensitive and puffing up a bit. Everyday gets a little more intense.  I've heard people that have had no reactions and others who have had extreme reactions. 

                                  I'm doing the treatments to save the ulnar nerve (funny bone nerve). The 2 nodes in that area had internodal extentions.  One tumor was pealed off of the nerve and he could not get margins. The other 3 sides had margins.  Being stage IV I realize my disease is elsewhere but quality of life issues stopped them from cutting this important nerve.  If it comes back I will be going systemic.  The radiologist in Charlotte was very specific with the numbers in the treatment so the radiation did not damage the nerve. That's another reason I'm thinking the local Doc added the bolus and not him.

                                  Just ask lots of questions, I was told that radiation works best when it involved nodes and the fewer the better. He was basing this off of a study done in Australia that hasn't been published yet. This is an adjucnt treatment and you can choose!

                                  Linda

                                  lhaley
                                  Participant

                                    Tricia,

                                    I've just finished day 7 treatment out of 23.  I was very impressed with my consult in Charlotte with statistics and their knowledge. However, I couldn't do the treatment there because of the round trip 5 hour drive and the amount of days.  The radiologist contacted someone local and they talked.  It went down from there.

                                    I just don't feel comfortable in this facility but I feel leaving mid treatment would be a mistake. They originally told me that they were adding a bolus to "protect" my skin. What they meant was it would enhance the skin area and I guess make sure that any cells along the skin would be killed.  My Charlotte Dr told me I would only have some slight reddining. The internet says the bolus basically guarantees blisters.  I haven't figured out yet if this Dr did it on her own.  When I went back to start up the treatments again I said something to her and she took it out of thetreatment plan. Makes me think this was her addition. I could have contacted CHarlotte and asked but when she removed it I didn't bother.

                                    Mine was stopped for 2 weeks while we dealt with what was thought to be a recurrance. Biopsy showed fatty tissue!  Have now had 7 treatments. My underarm near the elbow joint – is getting very sensitive and puffing up a bit. Everyday gets a little more intense.  I've heard people that have had no reactions and others who have had extreme reactions. 

                                    I'm doing the treatments to save the ulnar nerve (funny bone nerve). The 2 nodes in that area had internodal extentions.  One tumor was pealed off of the nerve and he could not get margins. The other 3 sides had margins.  Being stage IV I realize my disease is elsewhere but quality of life issues stopped them from cutting this important nerve.  If it comes back I will be going systemic.  The radiologist in Charlotte was very specific with the numbers in the treatment so the radiation did not damage the nerve. That's another reason I'm thinking the local Doc added the bolus and not him.

                                    Just ask lots of questions, I was told that radiation works best when it involved nodes and the fewer the better. He was basing this off of a study done in Australia that hasn't been published yet. This is an adjucnt treatment and you can choose!

                                    Linda

                                      triciad
                                      Participant

                                        Linda,

                                        Thanks so much for your insight into my situation.  I am sorry to hear that you are having some trouble with the treatment, but I have a good feeling that things are going to turn around for you soon!

                                        I teach, so this is a great time for me to get this treatment…summer off.  I hope to start soon so I can hopefully be back to my normal (most people would say abnormal) self by the beginning of the school year. 

                                        Best of luck with the rest of the treatments…you are in my prayers!

                                        Tricia

                                        triciad
                                        Participant

                                          Linda,

                                          Thanks so much for your insight into my situation.  I am sorry to hear that you are having some trouble with the treatment, but I have a good feeling that things are going to turn around for you soon!

                                          I teach, so this is a great time for me to get this treatment…summer off.  I hope to start soon so I can hopefully be back to my normal (most people would say abnormal) self by the beginning of the school year. 

                                          Best of luck with the rest of the treatments…you are in my prayers!

                                          Tricia

                                        nicoli
                                        Participant

                                          I finished 29 radiation treatments June 1st. Same stuff, 5 days a week, almost 6 weeks. I too used a bolus because the radiation onc said it would concentrate the radiation to where it was most likely cancer cells remained.

                                          I had read a November 2009 report that said that radiation treatment aferr surgery lessened the chances of recurrence. We will see.

                                          My radiation was to my scalp, covered most of my head. Since radiation kills hair follicles, I am completely and permenantly bald. My lesser side effects included 2nd degree sunburn symptoms, redness, itching, real sensitive scalp and peeling. No symptoms started until halfway through the treatments.

                                          My biggest symptom was the fatigue. Toward the end of treatments, I became real fatigued and it hasn't really gone away yet, almost 2 months later.

                                          I think radiation is a viable cancer treatment for stray cells, not so sure it does alot for actual tumors.

                                          I've done biochemo, surgery and radiation. Radiation is a piece of cake compared to the other two.

                                          Nicki, Stage 3b

                                          nicoli
                                          Participant

                                            I finished 29 radiation treatments June 1st. Same stuff, 5 days a week, almost 6 weeks. I too used a bolus because the radiation onc said it would concentrate the radiation to where it was most likely cancer cells remained.

                                            I had read a November 2009 report that said that radiation treatment aferr surgery lessened the chances of recurrence. We will see.

                                            My radiation was to my scalp, covered most of my head. Since radiation kills hair follicles, I am completely and permenantly bald. My lesser side effects included 2nd degree sunburn symptoms, redness, itching, real sensitive scalp and peeling. No symptoms started until halfway through the treatments.

                                            My biggest symptom was the fatigue. Toward the end of treatments, I became real fatigued and it hasn't really gone away yet, almost 2 months later.

                                            I think radiation is a viable cancer treatment for stray cells, not so sure it does alot for actual tumors.

                                            I've done biochemo, surgery and radiation. Radiation is a piece of cake compared to the other two.

                                            Nicki, Stage 3b

                                              triciad
                                              Participant

                                                Nicki,

                                                Thanks so much for yur response.  I'm sorry to hear about your side effects, especially the baldness, but if it works…totally worth it!  Best of luck that you will remain NED forever!  I did a year of Interferon, and I hope radiation will be easier.  Of course, being a teacher, the fatigue issue is a little scary.  I wonder if I will be able to start the school year…let's hope!

                                                Again, thanks for your help and keep up the fight!

                                                Tricia

                                                triciad
                                                Participant

                                                  Nicki,

                                                  Thanks so much for yur response.  I'm sorry to hear about your side effects, especially the baldness, but if it works…totally worth it!  Best of luck that you will remain NED forever!  I did a year of Interferon, and I hope radiation will be easier.  Of course, being a teacher, the fatigue issue is a little scary.  I wonder if I will be able to start the school year…let's hope!

                                                  Again, thanks for your help and keep up the fight!

                                                  Tricia

                                                Teodora
                                                Guest

                                                  Hi Tricia,

                                                  I've just finished 25 rounds of external radiation and I am heading to 4 rounds of internal radiation/breaky procedure next week/.The general side effects I experienced included fatigue/ tiredness, sunburns in the radiated area and diahrea/it started with crampy feeling in my stomach after first week/ controlled by alternating Immodium and Alka Seltzer.

                                                  Take care of yourself and get enough rest;and it should be a smoth sailing compared to chemo.

                                                  Good luck,

                                                  Teodora 

                                                  Teodora
                                                  Guest

                                                    Hi Tricia,

                                                    I've just finished 25 rounds of external radiation and I am heading to 4 rounds of internal radiation/breaky procedure next week/.The general side effects I experienced included fatigue/ tiredness, sunburns in the radiated area and diahrea/it started with crampy feeling in my stomach after first week/ controlled by alternating Immodium and Alka Seltzer.

                                                    Take care of yourself and get enough rest;and it should be a smoth sailing compared to chemo.

                                                    Good luck,

                                                    Teodora 

                                                      triciad
                                                      Participant

                                                        Hi Teodora,

                                                        Congratulations on finishing your external radiation and many good wishes for  successful internal radiation.  I will take your advice and rest up now because I remember how tired I was during the Interferon.  Thanks for your advice regarding radiation.  It's the not knowing that drives me crazy.  Thankfully, I now have some information on which to make decisions.  Without all the warriors on this board…I would be lost!

                                                        Keep up the positive attitude and many blessings for success with your treatments!

                                                        Tricia

                                                        triciad
                                                        Participant

                                                          Hi Teodora,

                                                          Congratulations on finishing your external radiation and many good wishes for  successful internal radiation.  I will take your advice and rest up now because I remember how tired I was during the Interferon.  Thanks for your advice regarding radiation.  It's the not knowing that drives me crazy.  Thankfully, I now have some information on which to make decisions.  Without all the warriors on this board…I would be lost!

                                                          Keep up the positive attitude and many blessings for success with your treatments!

                                                          Tricia

                                                        LynnLuc
                                                        Participant

                                                          I had radiation for 2 weeks in 2010 near my superior vena cava. Had a sunburn the size of a softball  on my back…no other side effects like that. Because they went close my esophagus I had trouble swallowing for a couple weeks ..like a very very sore throat and felt like a mega lump that I couldn't swollow too..

                                                            triciad
                                                            Participant

                                                              Lynn,

                                                              Thanks for your reply.  You seemed to handle the radiation very well…congrats!  I'm a little nervous right now because I just got the paperwork from the radiologist and it says possibly 43 treatments! 

                                                              Tricia

                                                              triciad
                                                              Participant

                                                                Lynn,

                                                                Thanks for your reply.  You seemed to handle the radiation very well…congrats!  I'm a little nervous right now because I just got the paperwork from the radiologist and it says possibly 43 treatments! 

                                                                Tricia

                                                              LynnLuc
                                                              Participant

                                                                I had radiation for 2 weeks in 2010 near my superior vena cava. Had a sunburn the size of a softball  on my back…no other side effects like that. Because they went close my esophagus I had trouble swallowing for a couple weeks ..like a very very sore throat and felt like a mega lump that I couldn't swollow too..

                                                                Jim M.
                                                                Participant

                                                                  Hi Tricia,

                                                                   I had 6 weeks of radiation to the right axillary in 2008. My oncologist said the radiation would reduce the chance of a local recurrence from 60 to 10%. There are some supplements that claim to increase the effectiveness of radiation while sparing patients the major side effects. I took Fish Oil, AHCC, and Querecetin during the time I had the radiation. I also used Miaderm radiation cream, developed by radiation oncologists to reduce the burning/blistering of the skin. My doctor said I received A high dose and was amazed that I had very few side effects. I had minor fatigue, some tightness, redness toward the end and pain just the last 2 treatments. I had no blistering.

                                                                   God Bless and much success,

                                                                   Jim M.

                                                                   stage 3C

                                                                  Jim M.
                                                                  Participant

                                                                    Hi Tricia,

                                                                     I had 6 weeks of radiation to the right axillary in 2008. My oncologist said the radiation would reduce the chance of a local recurrence from 60 to 10%. There are some supplements that claim to increase the effectiveness of radiation while sparing patients the major side effects. I took Fish Oil, AHCC, and Querecetin during the time I had the radiation. I also used Miaderm radiation cream, developed by radiation oncologists to reduce the burning/blistering of the skin. My doctor said I received A high dose and was amazed that I had very few side effects. I had minor fatigue, some tightness, redness toward the end and pain just the last 2 treatments. I had no blistering.

                                                                     God Bless and much success,

                                                                     Jim M.

                                                                     stage 3C

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