› Forums › Cutaneous Melanoma Community › My IL-2 Update…
- This topic has 48 replies, 12 voices, and was last updated 13 years, 2 months ago by
soniagodwin.
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- March 30, 2011 at 1:39 am
Hello everyone. It's been a while, sorry I've been MIA. Just out trying to live and enjoy life:) Anyway, I finished 2 cycles of IL-2, got through 9 bags the first time, then 8 the second time. I felt like I could've done more the second cycle but my whole mood and energy was thrown off by some of the staff at the ICU I was staying at. The lady who was wheeling me up to my room was telling me how she read in the paper that this healthy woman went in for a routine checkup, found out she had cancer, and died 4 months later. Umm, why are you telling me that?
Hello everyone. It's been a while, sorry I've been MIA. Just out trying to live and enjoy life:) Anyway, I finished 2 cycles of IL-2, got through 9 bags the first time, then 8 the second time. I felt like I could've done more the second cycle but my whole mood and energy was thrown off by some of the staff at the ICU I was staying at. The lady who was wheeling me up to my room was telling me how she read in the paper that this healthy woman went in for a routine checkup, found out she had cancer, and died 4 months later. Umm, why are you telling me that? That put me in a really bad headspace.The nurse who was putting in my PICC was taking forever and having complications. Mid-week, the PICC sort of came out and they had to reput the PICC in my other arm.
I recover relatively quickly from IL-2, so after being discharged Friday morning, I'm back to my normal self by Monday or Tuesday. My doc says this is due to me being so young. The only discomfort I have is just extremely dry skin and peeling around the ears for about 2 weeks.
My oncologist scheduled me for a CT scan of my chest and abdomen/pelvis 4-5 weeks after the second cycle, which was about 2 weeks ago (March 14). I met up with her last week to discuss the results and I guess they we're good.
Good news is that my chest CT came back negative of any tumors or nodules (WHEW!). I do have a swollen lymph node on the left side of my clavicle that has been there since December 2010 that measures a couple cm long but the CT showed that it didn't change in size since then.
I'm not sure how to feel about my abdomen/pelvis CT results. The CT of my abdomen showed that my liver, spleen, adrenal glands, pancreas, and left kidney appears normal (another WHEW!). There is a rounded 3.1 x 3.0 cm mass medial to the right kidney, unchanged. No new mass is seen in the abdomen. The mass next to my right kidney is what they initially found back in my CT scan back in Oct. 2010 that got this whole cancer ball rolling. The CT of my pelvis showed that there is a 3.4 x 4.8 cm mass next to my cecum. The mass previously measured 3.3 x 3.2 since my CT back in Oct. 2010.
So in conclusion, the CT showed that the lymph node didn't change in size, the 3.1 x 3.0 cm mass next to my kidney didn't change in size, but the other mass next to my cecum grew a little. My oncologist felt my lymph node and it felt smaller to her and she said she could actually feel a border around it this time which last time she couldn't so she ordered for me to get a PET CT scan the next day. Now I'm just waiting for her to compare the results of this PET CT scan with the one I had back in December. She's hoping the intensity changed. She's going to call me sometime this week to see tell me if I should continue on IL-2 or not. She wants to give this IL-2 another shot and I do, too. I don't feel I gave it my all the second cycle.
Do you guys think I should go for another few cycles, then get another PET Scan or should I just start looking into IPI? I wonder if I even qualify.
Also, I wanted to start taking daily vitamin and turmeric supplements but she said not to. Did anyone else take vitamin supplements during IL-2??? I don't see why it would be a bad thing. I know this is a very long post, but thanks for reading if you made it this far lol.
Love and light…
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- March 30, 2011 at 1:54 am
Chet, if your masses haven't grown more than 20% then you are considered stable. IL2 usually works very well after the first cycle, or not at all. That said, you are young and it doesn't sound like it will hurt you. Check to see if IPI is available. If it is, don't feel bad for not being a hero and getting more IL2. I had a painful experience with a pic line once, and I see that scar everytime I have blood drawn. Sounds like you are cooking right through this crap, hang in there, don't get dissappointed, and screw those ICU nurses, You are going to beat this thing.
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- March 30, 2011 at 1:54 am
Chet, if your masses haven't grown more than 20% then you are considered stable. IL2 usually works very well after the first cycle, or not at all. That said, you are young and it doesn't sound like it will hurt you. Check to see if IPI is available. If it is, don't feel bad for not being a hero and getting more IL2. I had a painful experience with a pic line once, and I see that scar everytime I have blood drawn. Sounds like you are cooking right through this crap, hang in there, don't get dissappointed, and screw those ICU nurses, You are going to beat this thing.
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- March 30, 2011 at 2:35 am
Chet,
I've been wondering about you, glad you posted. I haven't gone the IL2 route yet but there have been people here that pushed their Dr. for a second round and did respond. While you want to be NED the next best thing is stable!
I go to an intergrative health family Dr. She is totally into supplements and healthy eating. In the class that she offers she stressed that while doing any type of chemo, immuno therapy ect. not to take supplements due to possible interactions unless your onc. says it's ok. So, if your Dr. says no then I would think they have a reason.
Glad your out living and enjoying life! Keep us up to date!
Linda
Stage IV since 06
stable
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- March 30, 2011 at 2:35 am
Chet,
I've been wondering about you, glad you posted. I haven't gone the IL2 route yet but there have been people here that pushed their Dr. for a second round and did respond. While you want to be NED the next best thing is stable!
I go to an intergrative health family Dr. She is totally into supplements and healthy eating. In the class that she offers she stressed that while doing any type of chemo, immuno therapy ect. not to take supplements due to possible interactions unless your onc. says it's ok. So, if your Dr. says no then I would think they have a reason.
Glad your out living and enjoying life! Keep us up to date!
Linda
Stage IV since 06
stable
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- March 30, 2011 at 6:10 am
From your results so far I would definitely consider a 2nd round of IL-2 (weeks 3 & 4) I had 6 weeks (49 bags of Il-2 and was stable for 20 months. It looks like ther may be a timo=ing relationshipbetween trying both IL-2 and Ipi. Look at Jimmy B's research. It took me until Thursdays to be back to about normal after being released from hospital on Saturdays.. Course I'm in my 60's!
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- March 30, 2011 at 4:27 pm
Since u did respond a little to the IL2 i would def consider another round. Remember it is kicking in your own immune system and it plus the IL2 is still fighting the cancer. I just woke up one morning, about 8 days after returning home from hospital, and the 3 tumors in my neck were half their size and continued to shrink daily. So maybe yours on the inside r shrinking also for u and u just cant tell. Believe that the med is working and just wait for your next pet scan. And i know your young but rest is very important. lol. Hang out on the couch when your tired, your body will tell u when to rest so pay attention to it. i continue to pray for you and hope all goes well. Consider another round of IL2, i know i am..
carol b
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- March 30, 2011 at 11:56 pm
Thanks Carol! I was extremely happy to see that you responded to IL-2. I'll continue to keep you and everyone else in my prayers. I HATE this cancer because I feel like it's screwing up my life right now, as I'm sure we all feel. Staying focused and positive. I think I will push on for another go at IL-2. I need to respond to this, damnit lol.
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- March 30, 2011 at 11:56 pm
Thanks Carol! I was extremely happy to see that you responded to IL-2. I'll continue to keep you and everyone else in my prayers. I HATE this cancer because I feel like it's screwing up my life right now, as I'm sure we all feel. Staying focused and positive. I think I will push on for another go at IL-2. I need to respond to this, damnit lol.
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- March 30, 2011 at 4:27 pm
Since u did respond a little to the IL2 i would def consider another round. Remember it is kicking in your own immune system and it plus the IL2 is still fighting the cancer. I just woke up one morning, about 8 days after returning home from hospital, and the 3 tumors in my neck were half their size and continued to shrink daily. So maybe yours on the inside r shrinking also for u and u just cant tell. Believe that the med is working and just wait for your next pet scan. And i know your young but rest is very important. lol. Hang out on the couch when your tired, your body will tell u when to rest so pay attention to it. i continue to pray for you and hope all goes well. Consider another round of IL2, i know i am..
carol b
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- March 31, 2011 at 12:17 am
This is Jim Breitfeller's journey into the Maze of Melanoma. Jim Breitfeller has gathered medical information for the patient and the caregiver. As Lance Armstrong would say "Lets stand Up to Cancer" Jim's Battle with the Beast July 2005 to present.
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- March 31, 2011 at 12:17 am
This is Jim Breitfeller's journey into the Maze of Melanoma. Jim Breitfeller has gathered medical information for the patient and the caregiver. As Lance Armstrong would say "Lets stand Up to Cancer" Jim's Battle with the Beast July 2005 to present.
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- March 30, 2011 at 6:10 am
From your results so far I would definitely consider a 2nd round of IL-2 (weeks 3 & 4) I had 6 weeks (49 bags of Il-2 and was stable for 20 months. It looks like ther may be a timo=ing relationshipbetween trying both IL-2 and Ipi. Look at Jimmy B's research. It took me until Thursdays to be back to about normal after being released from hospital on Saturdays.. Course I'm in my 60's!
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- March 31, 2011 at 12:00 am
Absolutely go for it, Chet, especially since you recover relatively easily. The next time you get negativity from someone just say "Can we change the topic?". It's polite, but direct. If they don't get the hint then bring out the big guns.
keep us posted
Fen
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- March 31, 2011 at 12:00 am
Absolutely go for it, Chet, especially since you recover relatively easily. The next time you get negativity from someone just say "Can we change the topic?". It's polite, but direct. If they don't get the hint then bring out the big guns.
keep us posted
Fen
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- April 4, 2011 at 3:04 pm
Wish me luck guys. I'm about to go in for my 3rd cycle of IL-2 in a few hours. Let's hope I'll respond this time:)
Love and Light.
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- April 5, 2011 at 12:40 am
I will keep you in my thoughts and prayers. Stay strong Chet…you can do this…nice to see the success stories with IL-2..I'm on 2nd round of 4 treatments with ipi…if this doesn't work…I'm hoping to do IL-2. We have to keep fighting the beast with every breath we take. Val
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- April 5, 2011 at 12:40 am
I will keep you in my thoughts and prayers. Stay strong Chet…you can do this…nice to see the success stories with IL-2..I'm on 2nd round of 4 treatments with ipi…if this doesn't work…I'm hoping to do IL-2. We have to keep fighting the beast with every breath we take. Val
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- April 4, 2011 at 6:47 pm
I say absolutley GO FOR more IL-2! Go in it to win it my friend~ IL-2 logic SAME OR SHRINKAGE = at least partial responder and still in the running for complete responder…..
Best of luck, stay strong and give the IL-2 all you got!
Jane StageIV, complete responder to IL-2 almost 5 years cancer free
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- April 4, 2011 at 6:47 pm
I say absolutley GO FOR more IL-2! Go in it to win it my friend~ IL-2 logic SAME OR SHRINKAGE = at least partial responder and still in the running for complete responder…..
Best of luck, stay strong and give the IL-2 all you got!
Jane StageIV, complete responder to IL-2 almost 5 years cancer free
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- April 4, 2011 at 11:20 pm
I like your style & attitude! No advice just all the best and many prayers for you and wisdom. How old are you, if I may ask? You look soooooooo young! Take care.
Carol
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- April 4, 2011 at 11:20 pm
I like your style & attitude! No advice just all the best and many prayers for you and wisdom. How old are you, if I may ask? You look soooooooo young! Take care.
Carol
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- April 19, 2011 at 12:31 am
Hey Chet,, just checking in on ya,, try to update me…If you havent noticed we are the only ones taking IL2 on the board. How did you treatment go this time. Wa it harder than the last ones. How ya feeling. Have u noticed any change in your tumors… update me man,, Prayers as always
Carol B
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- April 20, 2011 at 5:12 am
Hey Carol!
This 3rd cycle actually went really well, as far as symptoms are concerned. It was actually my easiest cycle yet, despite me only getting through 9 bags this go round. I was admitted to my room late that Monday so I didn't receive my first bag until 1:00am Tuesday. So really, I didn't start my cycle until Tuesday and was discharged Friday morning. I didn't skip any bags and I got the rigors only once throughout the week, which is crazy because the previous 2 cycles I got the rigors almost everytime they gave me a bag. My appetite stayed steady so when I was able to eat, I was feasting on chicken noodle soup most of the week. I couldn't really keep anything heavy down. My only complaint throughout the week would be having fevers of 103, feeling nauseous after they gave me my shot of demerol, and vommiting a few times. But other than that, I was good. Even when I left my skin wasn't itchy or peeling like it usually is after I get discharged, and my taste buds weren't totally gone either. Usually when they discharge me Friday mornings, I don't get my taste buds back until that following Monday, but I was eating regular food that same night! WEIRD! I don't know what to attribute all this to. Maybe it's due to me exercising more which I didn't do the first 2 cycles. It could also be that I take time out my days to meditate for at least 30 minutes, and I also drank A LOT of water while I was in the hospital. I'm talking a gallon a day. My doctor was really surprised at how well the week went, as was I. I go back in this following Monday (4-25). As far as tumor changes go, the only one that is visible is the swollen lymph node above my left clavicle, but that was always there. I don't really notice a change in it. I won't know about the other 2 tumors that are inside me until my CT scan I take in June. I pray that they shrank or at least didn't grow. I'll take being stable. How are you holding up? Still praying for you!
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- April 21, 2011 at 3:22 pm
Hey Chet, im so glad to hear you did well with the third round. Getting 9 bags in the first week is awesome. i hope i can only be as brave as you. Wow a 103 fever is pretty serious, must have been an elevated immune system. Thats why they said i ran fevers after i came home. That means its working. Making your own system fight the nasty bastard. Demerol always made me puke but passed out right after, its worth it, lol. Glad to hear u didn't get the itches, thats horrible stuff. Just lingers on and on. I believe i will do as you and drink lots of water this time. A few people on here have said drink drink drink. It must make some side effects a little bearable. I pray that your tumors inside are gone or at least haven't gotten any bigger and maybe u will be able to watch the one in your neck shrink daily as i did. i get my Pet may 6 to see if it has spread any where else. The 3 above my clavicle are still gone. But the large one under my arm, which did shrink, has started growing back as fast as before and spreading across my chest. I'm gonna talk to the Surgeon about taking it out since i believe it is the culprit of all the others i had. I'm not sure what day i will get to take round 3 yet. I just know its in may sometime. Wish i was getting it now to slow the growth of the one under my arm, but i guess ONC knows best. I pray your scans shows miracles and u beat this disease. Prayers for you as always, and ill be looking for an update when you get out next time and hope you can stand 9 more bags of the poison. The more the better. Until then my friend i will be praying for you
Carol b
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- April 21, 2011 at 3:22 pm
Hey Chet, im so glad to hear you did well with the third round. Getting 9 bags in the first week is awesome. i hope i can only be as brave as you. Wow a 103 fever is pretty serious, must have been an elevated immune system. Thats why they said i ran fevers after i came home. That means its working. Making your own system fight the nasty bastard. Demerol always made me puke but passed out right after, its worth it, lol. Glad to hear u didn't get the itches, thats horrible stuff. Just lingers on and on. I believe i will do as you and drink lots of water this time. A few people on here have said drink drink drink. It must make some side effects a little bearable. I pray that your tumors inside are gone or at least haven't gotten any bigger and maybe u will be able to watch the one in your neck shrink daily as i did. i get my Pet may 6 to see if it has spread any where else. The 3 above my clavicle are still gone. But the large one under my arm, which did shrink, has started growing back as fast as before and spreading across my chest. I'm gonna talk to the Surgeon about taking it out since i believe it is the culprit of all the others i had. I'm not sure what day i will get to take round 3 yet. I just know its in may sometime. Wish i was getting it now to slow the growth of the one under my arm, but i guess ONC knows best. I pray your scans shows miracles and u beat this disease. Prayers for you as always, and ill be looking for an update when you get out next time and hope you can stand 9 more bags of the poison. The more the better. Until then my friend i will be praying for you
Carol b
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- May 14, 2011 at 12:09 am
OK CHET,,, how ya doing?? have u had any scans since ur treatment?? were they good?? did u respond??? u havent been on in awhile and as wandering about you alot.. I keep you in my prayers and hope all is going well for you,,,no not well,,i hope thing are going great!!! let us know how u doing man
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- May 14, 2011 at 12:09 am
OK CHET,,, how ya doing?? have u had any scans since ur treatment?? were they good?? did u respond??? u havent been on in awhile and as wandering about you alot.. I keep you in my prayers and hope all is going well for you,,,no not well,,i hope thing are going great!!! let us know how u doing man
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- April 20, 2011 at 5:12 am
Hey Carol!
This 3rd cycle actually went really well, as far as symptoms are concerned. It was actually my easiest cycle yet, despite me only getting through 9 bags this go round. I was admitted to my room late that Monday so I didn't receive my first bag until 1:00am Tuesday. So really, I didn't start my cycle until Tuesday and was discharged Friday morning. I didn't skip any bags and I got the rigors only once throughout the week, which is crazy because the previous 2 cycles I got the rigors almost everytime they gave me a bag. My appetite stayed steady so when I was able to eat, I was feasting on chicken noodle soup most of the week. I couldn't really keep anything heavy down. My only complaint throughout the week would be having fevers of 103, feeling nauseous after they gave me my shot of demerol, and vommiting a few times. But other than that, I was good. Even when I left my skin wasn't itchy or peeling like it usually is after I get discharged, and my taste buds weren't totally gone either. Usually when they discharge me Friday mornings, I don't get my taste buds back until that following Monday, but I was eating regular food that same night! WEIRD! I don't know what to attribute all this to. Maybe it's due to me exercising more which I didn't do the first 2 cycles. It could also be that I take time out my days to meditate for at least 30 minutes, and I also drank A LOT of water while I was in the hospital. I'm talking a gallon a day. My doctor was really surprised at how well the week went, as was I. I go back in this following Monday (4-25). As far as tumor changes go, the only one that is visible is the swollen lymph node above my left clavicle, but that was always there. I don't really notice a change in it. I won't know about the other 2 tumors that are inside me until my CT scan I take in June. I pray that they shrank or at least didn't grow. I'll take being stable. How are you holding up? Still praying for you!
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- April 19, 2011 at 12:31 am
Hey Chet,, just checking in on ya,, try to update me…If you havent noticed we are the only ones taking IL2 on the board. How did you treatment go this time. Wa it harder than the last ones. How ya feeling. Have u noticed any change in your tumors… update me man,, Prayers as always
Carol B
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- May 15, 2011 at 3:05 am
Hi Chet,
I did 18 months of biochemotherapy with IL-2 and I was 46 at the time. I was thankful I got through it, it was definitely brutal! I had a complete response and I just had a CT scan, all clear! In November I will be 5 years NED if my CT at that time is clear.
That woman that wheeled you in was so insensitive! Have you had your tumor checked for mutations? Mine was negative for all the common melanomas. My doctor cannot tell me what my mutation is.
Hang in there! Where are you being treated? I am in the S.F. Bay Area and my doctor is David Minor.
Keep on keeping on and I hope whatever is decided for you, you will be NED too!
Suzanne
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- May 15, 2011 at 3:05 am
Hi Chet,
I did 18 months of biochemotherapy with IL-2 and I was 46 at the time. I was thankful I got through it, it was definitely brutal! I had a complete response and I just had a CT scan, all clear! In November I will be 5 years NED if my CT at that time is clear.
That woman that wheeled you in was so insensitive! Have you had your tumor checked for mutations? Mine was negative for all the common melanomas. My doctor cannot tell me what my mutation is.
Hang in there! Where are you being treated? I am in the S.F. Bay Area and my doctor is David Minor.
Keep on keeping on and I hope whatever is decided for you, you will be NED too!
Suzanne
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- May 15, 2011 at 3:05 am
Hi Chet,
I did 18 months of biochemotherapy with IL-2 and I was 46 at the time. I was thankful I got through it, it was definitely brutal! I had a complete response and I just had a CT scan, all clear! In November I will be 5 years NED if my CT at that time is clear.
That woman that wheeled you in was so insensitive! Have you had your tumor checked for mutations? Mine was negative for all the common melanomas. My doctor cannot tell me what my mutation is.
Hang in there! Where are you being treated? I am in the S.F. Bay Area and my doctor is David Minor.
Keep on keeping on and I hope whatever is decided for you, you will be NED too!
Suzanne
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- May 15, 2011 at 3:05 am
Hi Chet,
I did 18 months of biochemotherapy with IL-2 and I was 46 at the time. I was thankful I got through it, it was definitely brutal! I had a complete response and I just had a CT scan, all clear! In November I will be 5 years NED if my CT at that time is clear.
That woman that wheeled you in was so insensitive! Have you had your tumor checked for mutations? Mine was negative for all the common melanomas. My doctor cannot tell me what my mutation is.
Hang in there! Where are you being treated? I am in the S.F. Bay Area and my doctor is David Minor.
Keep on keeping on and I hope whatever is decided for you, you will be NED too!
Suzanne
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- July 13, 2011 at 10:08 pm
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- July 13, 2011 at 10:08 pm
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Tagged: cutaneous melanoma
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