› Forums › General Melanoma Community › Radiation then IL2
- This topic has 39 replies, 12 voices, and was last updated 12 years, 10 months ago by
Judy D.
- Post
-
- January 21, 2012 at 9:59 pm
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!
- Replies
-
-
- January 21, 2012 at 10:23 pm
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
-
- January 21, 2012 at 10:23 pm
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
-
- January 21, 2012 at 10:23 pm
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
-
- January 21, 2012 at 11:48 pm
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
-
- January 21, 2012 at 11:48 pm
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
-
- January 21, 2012 at 11:48 pm
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
-
- January 22, 2012 at 1:09 am
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) -
- January 22, 2012 at 1:09 am
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) -
- January 22, 2012 at 1:09 am
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) -
- January 22, 2012 at 1:15 am
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
-
- January 22, 2012 at 1:15 am
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
-
- January 22, 2012 at 1:15 am
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
-
- January 23, 2012 at 12:33 am
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
-
- January 23, 2012 at 12:33 am
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
-
- January 23, 2012 at 12:33 am
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
-
- January 23, 2012 at 12:50 pm
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
-
- January 23, 2012 at 12:50 pm
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
-
- January 23, 2012 at 4:16 pm
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)
-
- January 23, 2012 at 4:28 pm
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
-
- January 23, 2012 at 4:28 pm
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
-
- January 23, 2012 at 4:28 pm
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
-
- January 23, 2012 at 4:16 pm
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)
-
- January 23, 2012 at 4:16 pm
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)
-
- January 23, 2012 at 12:50 pm
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
-
- January 23, 2012 at 2:19 pm
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
-
- January 23, 2012 at 2:19 pm
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
-
- January 23, 2012 at 2:19 pm
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
-
- January 23, 2012 at 7:32 pm
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.
-
- January 24, 2012 at 1:39 am
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
-
- January 24, 2012 at 1:39 am
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
-
- January 24, 2012 at 1:39 am
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
-
- You must be logged in to reply to this topic.