The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Radiation then IL2

Forums General Melanoma Community Radiation then IL2

  • Post
    Ali
    Participant

      We are going to start radiation early next week of the femur and ischium.  I have not done much research on radiation.  Wondering what I should expect as far as fatigue or other side effects.  Has anyone else had radiation to thier bones?

      We are going to start radiation early next week of the femur and ischium.  I have not done much research on radiation.  Wondering what I should expect as far as fatigue or other side effects.  Has anyone else had radiation to thier bones?

      Then the next week we start with IL2.  The Dr. thinks that maybe the radiation that will help the pain, could get the body's immune response going and increase the effectiveness of the IL2.  He said he used to not even offer IL2 for patients with bone and liver mets (I have both), but now thinks with radiation it is worth a try. 

      In between rounds (there is a 4 week break) I will fly to NIH and have some subqs taken out to try and harvest them for a TIL trial in case we get there.

      If the IL2 is not working, we switch to IPI.  If we get into some trouble we get on the braf inhibitors. 

      I really liked the plan.  Just praying I have time to give everything a chance.  This has been a very tough week for our little family.  I am so ready to fight for this heartbreak  to go away!

    Viewing 29 reply threads
    • Replies
        MaryD
        Participant

          Hi Ali,

          I can only imagine how difficult this week has been for you and your family but it sounds like you and your Dr. have a great plan of attack in place.    That's great that you are flying to NIH as well to harvest some subqs so that everything is in place should you need that option.  

          I've only had radiation on my arm (which was easy with few side effects) but I'm sure others on the board can give you some feedback on what side effects, if any, are involved with radiation to bone mets.

          Sending good thoughts and prayers for you!

          Best regards,

          Mary – Stage IV

          MaryD
          Participant

            Hi Ali,

            I can only imagine how difficult this week has been for you and your family but it sounds like you and your Dr. have a great plan of attack in place.    That's great that you are flying to NIH as well to harvest some subqs so that everything is in place should you need that option.  

            I've only had radiation on my arm (which was easy with few side effects) but I'm sure others on the board can give you some feedback on what side effects, if any, are involved with radiation to bone mets.

            Sending good thoughts and prayers for you!

            Best regards,

            Mary – Stage IV

            MaryD
            Participant

              Hi Ali,

              I can only imagine how difficult this week has been for you and your family but it sounds like you and your Dr. have a great plan of attack in place.    That's great that you are flying to NIH as well to harvest some subqs so that everything is in place should you need that option.  

              I've only had radiation on my arm (which was easy with few side effects) but I'm sure others on the board can give you some feedback on what side effects, if any, are involved with radiation to bone mets.

              Sending good thoughts and prayers for you!

              Best regards,

              Mary – Stage IV

              FormerCaregiver
              Participant

                Ali, thanks for the update. In general, radiation treatment can have side effects that are often quite mild and localised at low doses. At higher doses, the adverse effects are similar to what people might experience with chemo.

                It is very good that you are starting IL-2 next week. It is also great that you are also trying to get into the TIL trial at NIH, as they use IL-2 as part of their treatment.

                You are in my thoughts and prayers.

                Frank from Australia

                FormerCaregiver
                Participant

                  Ali, thanks for the update. In general, radiation treatment can have side effects that are often quite mild and localised at low doses. At higher doses, the adverse effects are similar to what people might experience with chemo.

                  It is very good that you are starting IL-2 next week. It is also great that you are also trying to get into the TIL trial at NIH, as they use IL-2 as part of their treatment.

                  You are in my thoughts and prayers.

                  Frank from Australia

                  FormerCaregiver
                  Participant

                    Ali, thanks for the update. In general, radiation treatment can have side effects that are often quite mild and localised at low doses. At higher doses, the adverse effects are similar to what people might experience with chemo.

                    It is very good that you are starting IL-2 next week. It is also great that you are also trying to get into the TIL trial at NIH, as they use IL-2 as part of their treatment.

                    You are in my thoughts and prayers.

                    Frank from Australia

                    Phil S
                    Participant
                      So glad you have a plan of attack, it definitely helps when you are in fighting mode! We wish you the very best with IL2 and radiation, since you are young and in good condition, I am sure it will be manageable.I know exactly how you feel about having a tough week with your kids, we also have a 7 and 9 year old, and I wish more than anything that they didn’t have to learn the words; cancer, chemo, and tumors. But, we still have plenty of good moments as a family, and you will too! Stay positive, there are plenty of treatment options. God bless, Valerie (Phil’s wife)
                      Phil S
                      Participant
                        So glad you have a plan of attack, it definitely helps when you are in fighting mode! We wish you the very best with IL2 and radiation, since you are young and in good condition, I am sure it will be manageable.I know exactly how you feel about having a tough week with your kids, we also have a 7 and 9 year old, and I wish more than anything that they didn’t have to learn the words; cancer, chemo, and tumors. But, we still have plenty of good moments as a family, and you will too! Stay positive, there are plenty of treatment options. God bless, Valerie (Phil’s wife)
                        Phil S
                        Participant
                          So glad you have a plan of attack, it definitely helps when you are in fighting mode! We wish you the very best with IL2 and radiation, since you are young and in good condition, I am sure it will be manageable.I know exactly how you feel about having a tough week with your kids, we also have a 7 and 9 year old, and I wish more than anything that they didn’t have to learn the words; cancer, chemo, and tumors. But, we still have plenty of good moments as a family, and you will too! Stay positive, there are plenty of treatment options. God bless, Valerie (Phil’s wife)
                          Rebecca and Bob
                          Participant

                            Ali,

                            Sorry your going through this, but just want to say that we think your making a great decision by going to NIH. You are young and you have that going for you. NIH has a lot more choices with TIL and trials.  My husband has been a patient there since 2007. You can read our profile, he has been through IL-2 and it really helped him.  When my husband was diagnosed our boys were only 1 and 3 so I know this has been so hard on you and your family because it turned our lives upside down.

                            You are doing all the right things and just be as aggressive as you can with this disease. We will hopefully be at NIH next week for my husband's own scans. He tries to put it off because the anxiety is so tough. Sending prayers your way that you find the treatment that works so you and  your family can get back to normal.

                            Rebecca

                            Rebecca and Bob
                            Participant

                              Ali,

                              Sorry your going through this, but just want to say that we think your making a great decision by going to NIH. You are young and you have that going for you. NIH has a lot more choices with TIL and trials.  My husband has been a patient there since 2007. You can read our profile, he has been through IL-2 and it really helped him.  When my husband was diagnosed our boys were only 1 and 3 so I know this has been so hard on you and your family because it turned our lives upside down.

                              You are doing all the right things and just be as aggressive as you can with this disease. We will hopefully be at NIH next week for my husband's own scans. He tries to put it off because the anxiety is so tough. Sending prayers your way that you find the treatment that works so you and  your family can get back to normal.

                              Rebecca

                              Rebecca and Bob
                              Participant

                                Ali,

                                Sorry your going through this, but just want to say that we think your making a great decision by going to NIH. You are young and you have that going for you. NIH has a lot more choices with TIL and trials.  My husband has been a patient there since 2007. You can read our profile, he has been through IL-2 and it really helped him.  When my husband was diagnosed our boys were only 1 and 3 so I know this has been so hard on you and your family because it turned our lives upside down.

                                You are doing all the right things and just be as aggressive as you can with this disease. We will hopefully be at NIH next week for my husband's own scans. He tries to put it off because the anxiety is so tough. Sending prayers your way that you find the treatment that works so you and  your family can get back to normal.

                                Rebecca

                                akls
                                Participant

                                  Ali,

                                  Just wanted to tell you I'm glad you have a plan and it sounds like a great one!  Stay positive, this is going to work!  I'll be praying for this to be easy and that it will get rid of every last bit of mel.

                                  Amy S. in Michigan

                                  akls
                                  Participant

                                    Ali,

                                    Just wanted to tell you I'm glad you have a plan and it sounds like a great one!  Stay positive, this is going to work!  I'll be praying for this to be easy and that it will get rid of every last bit of mel.

                                    Amy S. in Michigan

                                    akls
                                    Participant

                                      Ali,

                                      Just wanted to tell you I'm glad you have a plan and it sounds like a great one!  Stay positive, this is going to work!  I'll be praying for this to be easy and that it will get rid of every last bit of mel.

                                      Amy S. in Michigan

                                      Karin L
                                      Participant

                                        You and your Dr. have come up with what seems to be a great plan of attack.  Stay as positive as you can and you will do great.  Just a word of hope from me.  I also had/have liver and bone mets, as well as in my groin lymph nodes,  and after a trial attempt I did HD IL2, 2 rounds, and I am doing great!  I had trouble walking into the hospital due to pain in my spine round 1, and within 4 wks. of treatment I was walking on my own. ( We were going to do radiation in between hospital stays but opted to stay on treatment course of the IL2.  The bone mets were discovered in the  hospital week 1).  Most of the liver lesions have disappeared and the couple of stubborn ones have shrunk 70-80%. You are going to be fine!

                                        Karin

                                        Karin L
                                        Participant

                                          You and your Dr. have come up with what seems to be a great plan of attack.  Stay as positive as you can and you will do great.  Just a word of hope from me.  I also had/have liver and bone mets, as well as in my groin lymph nodes,  and after a trial attempt I did HD IL2, 2 rounds, and I am doing great!  I had trouble walking into the hospital due to pain in my spine round 1, and within 4 wks. of treatment I was walking on my own. ( We were going to do radiation in between hospital stays but opted to stay on treatment course of the IL2.  The bone mets were discovered in the  hospital week 1).  Most of the liver lesions have disappeared and the couple of stubborn ones have shrunk 70-80%. You are going to be fine!

                                          Karin

                                          Karin L
                                          Participant

                                            You and your Dr. have come up with what seems to be a great plan of attack.  Stay as positive as you can and you will do great.  Just a word of hope from me.  I also had/have liver and bone mets, as well as in my groin lymph nodes,  and after a trial attempt I did HD IL2, 2 rounds, and I am doing great!  I had trouble walking into the hospital due to pain in my spine round 1, and within 4 wks. of treatment I was walking on my own. ( We were going to do radiation in between hospital stays but opted to stay on treatment course of the IL2.  The bone mets were discovered in the  hospital week 1).  Most of the liver lesions have disappeared and the couple of stubborn ones have shrunk 70-80%. You are going to be fine!

                                            Karin

                                            LynnLuc
                                            Participant

                                              I had 2 weeks of radiation to the center of my chest, close to my heart. I had a "sunburn" softball size on my back for a few weeks afterwards, otherwise I was fine…perhaps tired, but that could have been the Temodar…

                                              LynnLuc
                                              Participant

                                                I had 2 weeks of radiation to the center of my chest, close to my heart. I had a "sunburn" softball size on my back for a few weeks afterwards, otherwise I was fine…perhaps tired, but that could have been the Temodar…

                                                LynnLuc
                                                Participant

                                                  I had 2 weeks of radiation to the center of my chest, close to my heart. I had a "sunburn" softball size on my back for a few weeks afterwards, otherwise I was fine…perhaps tired, but that could have been the Temodar…

                                                  justlittleoleme
                                                  Participant

                                                    Ali,

                                                    Sounds like you have a well thought out plan.  As you know with Melanoma, be ready to change plans at the drop of a hat!

                                                    My husband experienced nausea and some swelling.  His radiation was on his neck so it made eating difficult.  His skin seemed to do ok.  He was making sure to use the lotion they suggested.  They also gave him a great book on head/neck radiation which helped him immensely with knowing what to expect.

                                                    Our radiologist and his staff were great sources of information.  If we had questions, they had answers!

                                                    Will be praying for you and your family.

                                                    Hang tough!

                                                    Barb

                                                    justlittleoleme
                                                    Participant

                                                      Ali,

                                                      Sounds like you have a well thought out plan.  As you know with Melanoma, be ready to change plans at the drop of a hat!

                                                      My husband experienced nausea and some swelling.  His radiation was on his neck so it made eating difficult.  His skin seemed to do ok.  He was making sure to use the lotion they suggested.  They also gave him a great book on head/neck radiation which helped him immensely with knowing what to expect.

                                                      Our radiologist and his staff were great sources of information.  If we had questions, they had answers!

                                                      Will be praying for you and your family.

                                                      Hang tough!

                                                      Barb

                                                        sj541
                                                        Participant

                                                          Hi Barb – hope your husband is doing better.  Can I ask how did you make it easier for him to eat given the neck radiation?  My sister is battling stage 4 that has spread to throat/neck area so it's difficult keeping even liquids down.  I read thicker liquids are easier so we have been trying that.  She doesn't want a feeding tube.  Did your husband have one?

                                                           

                                                          thanks, Stacie in New York (sister to Karen stage 4)

                                                          justlittleoleme
                                                          Participant

                                                            Stacie,

                                                            I made smoothies.  He also ate yogurt, pudding and soups.  He was adamant that he not have a feeding tube so we did whatever we could to avoid that.  He only had 5 radiation treatments over a 2 1/2 week period so we didn't have to deal with it that long.

                                                            barb

                                                            justlittleoleme
                                                            Participant

                                                              Stacie,

                                                              I made smoothies.  He also ate yogurt, pudding and soups.  He was adamant that he not have a feeding tube so we did whatever we could to avoid that.  He only had 5 radiation treatments over a 2 1/2 week period so we didn't have to deal with it that long.

                                                              barb

                                                              justlittleoleme
                                                              Participant

                                                                Stacie,

                                                                I made smoothies.  He also ate yogurt, pudding and soups.  He was adamant that he not have a feeding tube so we did whatever we could to avoid that.  He only had 5 radiation treatments over a 2 1/2 week period so we didn't have to deal with it that long.

                                                                barb

                                                                sj541
                                                                Participant

                                                                  Hi Barb – hope your husband is doing better.  Can I ask how did you make it easier for him to eat given the neck radiation?  My sister is battling stage 4 that has spread to throat/neck area so it's difficult keeping even liquids down.  I read thicker liquids are easier so we have been trying that.  She doesn't want a feeding tube.  Did your husband have one?

                                                                   

                                                                  thanks, Stacie in New York (sister to Karen stage 4)

                                                                  sj541
                                                                  Participant

                                                                    Hi Barb – hope your husband is doing better.  Can I ask how did you make it easier for him to eat given the neck radiation?  My sister is battling stage 4 that has spread to throat/neck area so it's difficult keeping even liquids down.  I read thicker liquids are easier so we have been trying that.  She doesn't want a feeding tube.  Did your husband have one?

                                                                     

                                                                    thanks, Stacie in New York (sister to Karen stage 4)

                                                                  justlittleoleme
                                                                  Participant

                                                                    Ali,

                                                                    Sounds like you have a well thought out plan.  As you know with Melanoma, be ready to change plans at the drop of a hat!

                                                                    My husband experienced nausea and some swelling.  His radiation was on his neck so it made eating difficult.  His skin seemed to do ok.  He was making sure to use the lotion they suggested.  They also gave him a great book on head/neck radiation which helped him immensely with knowing what to expect.

                                                                    Our radiologist and his staff were great sources of information.  If we had questions, they had answers!

                                                                    Will be praying for you and your family.

                                                                    Hang tough!

                                                                    Barb

                                                                    fdess056
                                                                    Participant

                                                                      Hi Ali.  Just wanted to wish you the best.  Sounds like a strong plan.  I had radiation on a bone met on my tibia right at the knee joint.  We decided on SRS.  2 shots of high dose radiation in the same day and that was it.  I was out running 2 days later.  The follow up scan stilled showed a spot but it could still be healing from the biopsy and radiation. Since then I've had additional mets in my lungs and brain.  I just had my 2nd treatment of IPI with only very minor side effects.  I hear IL 2 can be pretty tough so it probably best to go for that while you're still at your strongest. then follow up or switch to something else, in your case IPI.    I know someone, a stage 4, who entered an IL-2 trial nine years ago and he's been NED ever since.   You and your family are in my thoughts

                                                                      Frankd  Brooklyn

                                                                      fdess056
                                                                      Participant

                                                                        Hi Ali.  Just wanted to wish you the best.  Sounds like a strong plan.  I had radiation on a bone met on my tibia right at the knee joint.  We decided on SRS.  2 shots of high dose radiation in the same day and that was it.  I was out running 2 days later.  The follow up scan stilled showed a spot but it could still be healing from the biopsy and radiation. Since then I've had additional mets in my lungs and brain.  I just had my 2nd treatment of IPI with only very minor side effects.  I hear IL 2 can be pretty tough so it probably best to go for that while you're still at your strongest. then follow up or switch to something else, in your case IPI.    I know someone, a stage 4, who entered an IL-2 trial nine years ago and he's been NED ever since.   You and your family are in my thoughts

                                                                        Frankd  Brooklyn

                                                                        fdess056
                                                                        Participant

                                                                          Hi Ali.  Just wanted to wish you the best.  Sounds like a strong plan.  I had radiation on a bone met on my tibia right at the knee joint.  We decided on SRS.  2 shots of high dose radiation in the same day and that was it.  I was out running 2 days later.  The follow up scan stilled showed a spot but it could still be healing from the biopsy and radiation. Since then I've had additional mets in my lungs and brain.  I just had my 2nd treatment of IPI with only very minor side effects.  I hear IL 2 can be pretty tough so it probably best to go for that while you're still at your strongest. then follow up or switch to something else, in your case IPI.    I know someone, a stage 4, who entered an IL-2 trial nine years ago and he's been NED ever since.   You and your family are in my thoughts

                                                                          Frankd  Brooklyn

                                                                          Ali
                                                                          Participant

                                                                            Thanks so much you guys!  I have been trying to respond for the last couple days, but the captcha would never work.  This is just the kind of stories/encouragments/hope/info I needed.  I start radiation Wed.  Bring it on.

                                                                              Judy D
                                                                              Participant

                                                                                All I can say is stay positive.  I am a stage IV mel survivor.  I have been battling the beast for over 15 years and I am once again NED, Praise God!  I am on the new drug, Zelboraf and it is working out great.  I will pray great and wonderful things to come your way… stay strong  and be encouraged.

                                                                                Judy

                                                                                Judy D
                                                                                Participant

                                                                                  All I can say is stay positive.  I am a stage IV mel survivor.  I have been battling the beast for over 15 years and I am once again NED, Praise God!  I am on the new drug, Zelboraf and it is working out great.  I will pray great and wonderful things to come your way… stay strong  and be encouraged.

                                                                                  Judy

                                                                                  Judy D
                                                                                  Participant

                                                                                    All I can say is stay positive.  I am a stage IV mel survivor.  I have been battling the beast for over 15 years and I am once again NED, Praise God!  I am on the new drug, Zelboraf and it is working out great.  I will pray great and wonderful things to come your way… stay strong  and be encouraged.

                                                                                    Judy

                                                                                  Ali
                                                                                  Participant

                                                                                    Thanks so much you guys!  I have been trying to respond for the last couple days, but the captcha would never work.  This is just the kind of stories/encouragments/hope/info I needed.  I start radiation Wed.  Bring it on.

                                                                                    Ali
                                                                                    Participant

                                                                                      Thanks so much you guys!  I have been trying to respond for the last couple days, but the captcha would never work.  This is just the kind of stories/encouragments/hope/info I needed.  I start radiation Wed.  Bring it on.

                                                                                  Viewing 29 reply threads
                                                                                  • You must be logged in to reply to this topic.
                                                                                  About the MRF Patient Forum

                                                                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                                  Popular Topics