› Forums › Cutaneous Melanoma Community › finished IL-2
- This topic has 45 replies, 10 voices, and was last updated 11 years, 9 months ago by
JerryfromFauq.
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- May 26, 2012 at 1:48 am
Just wanted to update everyone. I am waiting to be discharged after my 6th and final week of IL-2. My fist scans looked really good, shrinkage and stable disease. The second scans showed new subcutaneous mets (I already knew that because I could feel them) but the tumor in the liver and bones looked stable still. So we went ahead with the last cycle. I got 9 bags in the fist week and 8 for the second. I can still feel 2 subqs which have shrunk this week. The Dr.
Just wanted to update everyone. I am waiting to be discharged after my 6th and final week of IL-2. My fist scans looked really good, shrinkage and stable disease. The second scans showed new subcutaneous mets (I already knew that because I could feel them) but the tumor in the liver and bones looked stable still. So we went ahead with the last cycle. I got 9 bags in the fist week and 8 for the second. I can still feel 2 subqs which have shrunk this week. The Dr. guesses will have to go with a plan b, that I most likely will not be a complete responder (next scans in July). But today I am grateful that the IL-2 has helped (I have felt 6 tumors disappear over the last 4 month), and I hope it will keep helping, and maybe enhance the effects of a next treatment.
This week we have found what may be vitiligo on my belly, and the Dr. said some moles on my back look like they have a halo of white around them. Those are good signs that my body is specifically attacking my melanocytes.
I feel so blessed, we were so well taken care of in and out of the hospital.
If anyone has questions about the IL2 experience you can message me and I will be happy to answer any questions.
I pray for all fellow warriors that we can beat this thing!!!! God bless.
Ali
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- May 26, 2012 at 8:40 am
May this treatment only be an initial step to NED..Happy that there is evidence the IL-2 is working.God bless and continued prayers for you to beat this beast.Now go live this holiday weekend. Al
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- May 26, 2012 at 8:40 am
May this treatment only be an initial step to NED..Happy that there is evidence the IL-2 is working.God bless and continued prayers for you to beat this beast.Now go live this holiday weekend. Al
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- May 26, 2012 at 8:40 am
May this treatment only be an initial step to NED..Happy that there is evidence the IL-2 is working.God bless and continued prayers for you to beat this beast.Now go live this holiday weekend. Al
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- May 26, 2012 at 3:14 pm
SO happy that the IL2 treatments are over for you Alisa. You are a trooper! Couple of weeks and you will get scans again I hope? I remember for myself the first thing that started showing up post treatment was vitiligo and I had the itchy rash for months. All good signs.
Karin
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- May 26, 2012 at 3:14 pm
SO happy that the IL2 treatments are over for you Alisa. You are a trooper! Couple of weeks and you will get scans again I hope? I remember for myself the first thing that started showing up post treatment was vitiligo and I had the itchy rash for months. All good signs.
Karin
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- May 26, 2012 at 3:14 pm
SO happy that the IL2 treatments are over for you Alisa. You are a trooper! Couple of weeks and you will get scans again I hope? I remember for myself the first thing that started showing up post treatment was vitiligo and I had the itchy rash for months. All good signs.
Karin
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- May 26, 2012 at 10:44 pm
That is a huge accomplishment, Ali. I can't imagine what you went through, but my hat goes off to you. Hoping that Plan B does the trick. fen
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- May 26, 2012 at 10:59 pm
Ali, We follow your blog, I feel like you write exactly how we feel, when you are in the fight against melanoma, some days are better than others! You seem to capture our emotions, our ups and downs, and our hopes and fears, so thanks so much for sharing your story. Big congrats on finishing up your IL2, you are amazing! Hope the IL2 continues to shrink your tumors. The best for plan B, and totally enjoy every minute of the next month with your family. Big hugs, Valerie (Phil’s wife) -
- May 26, 2012 at 10:59 pm
Ali, We follow your blog, I feel like you write exactly how we feel, when you are in the fight against melanoma, some days are better than others! You seem to capture our emotions, our ups and downs, and our hopes and fears, so thanks so much for sharing your story. Big congrats on finishing up your IL2, you are amazing! Hope the IL2 continues to shrink your tumors. The best for plan B, and totally enjoy every minute of the next month with your family. Big hugs, Valerie (Phil’s wife) -
- May 26, 2012 at 10:59 pm
Ali, We follow your blog, I feel like you write exactly how we feel, when you are in the fight against melanoma, some days are better than others! You seem to capture our emotions, our ups and downs, and our hopes and fears, so thanks so much for sharing your story. Big congrats on finishing up your IL2, you are amazing! Hope the IL2 continues to shrink your tumors. The best for plan B, and totally enjoy every minute of the next month with your family. Big hugs, Valerie (Phil’s wife) -
- May 29, 2012 at 2:56 am
And may God our Father continue to bless you!
Courage as you move forward.
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- May 29, 2012 at 9:32 pm
Way to go Ali !!! I didn't know the white halo around the moles was a good sign. When I do mole patrol on
Wayne this week, I will notice. I know a lot of them are crusty feeling. I'm so happy for your GOOD NEWS !
KEEP ON KEEPING ON and GOD BLESS YOU AND HEAL YOU !!!
Nancy (Devoted wife of 3x warrior Wayne)
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- May 29, 2012 at 9:32 pm
Way to go Ali !!! I didn't know the white halo around the moles was a good sign. When I do mole patrol on
Wayne this week, I will notice. I know a lot of them are crusty feeling. I'm so happy for your GOOD NEWS !
KEEP ON KEEPING ON and GOD BLESS YOU AND HEAL YOU !!!
Nancy (Devoted wife of 3x warrior Wayne)
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- May 29, 2012 at 9:32 pm
Way to go Ali !!! I didn't know the white halo around the moles was a good sign. When I do mole patrol on
Wayne this week, I will notice. I know a lot of them are crusty feeling. I'm so happy for your GOOD NEWS !
KEEP ON KEEPING ON and GOD BLESS YOU AND HEAL YOU !!!
Nancy (Devoted wife of 3x warrior Wayne)
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- May 30, 2012 at 1:41 am
Dear Ali,
What a trooper indeed!! 6 rounds is remarkable. I hope you continue to respond and those subq's melt away. You are similar in many ways to my son (so young with 3 beautiful children), and I hope and pray both of you beat this disease. God Bless!
Jeff's Mom
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- May 30, 2012 at 1:41 am
Dear Ali,
What a trooper indeed!! 6 rounds is remarkable. I hope you continue to respond and those subq's melt away. You are similar in many ways to my son (so young with 3 beautiful children), and I hope and pray both of you beat this disease. God Bless!
Jeff's Mom
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- May 30, 2012 at 1:41 am
Dear Ali,
What a trooper indeed!! 6 rounds is remarkable. I hope you continue to respond and those subq's melt away. You are similar in many ways to my son (so young with 3 beautiful children), and I hope and pray both of you beat this disease. God Bless!
Jeff's Mom
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- June 26, 2012 at 1:21 pm
Hi Ali, I am going to start my first treatment of IL-2 in 2 days. My Dr. tells me that I am going to have to take 15 doses in 5 days then I can rest at home 2 weeks. The only things I was told as far as side effects are that I will experience the worst flu I have ever had. Is there anything you can share with me?
Thank you,
Lindsey
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- June 27, 2012 at 7:31 pm
Lindsey, the maximum is 15 dodses in 5 days. The average is in the 7-8 range. It is quite likely that your body, kidneys,, blood pressure,etc will saay to skip a feww bags. I varied between 4 bags and 12 per week during my treatments. Look aat my profile for my experiences during my 6 weeks of IL-2 (3 rounds).
i have went thru three rounds of IL-2 (six weeks of treatments) The main things my IL-2-Melanoma speialist Oncologist warned me about taking was blood thinners. They will give many shots of blood thinners duriig the week of each Il-2 hospitalization. You are welcome to read my experiences in my Profile. Jane is a wonderful lady with much great advice (She has now been NED for over 5 years since her IL-2 treatments!). The items I push the most is to drink a steady amount of fluids to keep the kidney function up. The urine output and a low blood pressure were my two main problems. I did learn later that black licorace raises ones blood pressure ( few people get high blood prssure from IL-2, be sure what is happening with your body to learn what effects you experience.) Food starts to taste poorly after about three days, but the taste ability returns about three-4 days after discharge. Do not to try to "man it out" when you starts to get cold feet/or chest (which usually turns into the RIGORS – extremely bad chills/shaking). If the nurses are told when this first starts they have meds which will readily control the worst of the side effects. Get the meds immediately!) Same goes for fealings of nausea.
Jane's info page:
http://melanomaresources.info/jane.html#homenotes
Good luck to you. IL-2 is tough, but is do-able. and still provide the best long term results of any melanoma treatment.
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- June 27, 2012 at 7:31 pm
Lindsey, the maximum is 15 dodses in 5 days. The average is in the 7-8 range. It is quite likely that your body, kidneys,, blood pressure,etc will saay to skip a feww bags. I varied between 4 bags and 12 per week during my treatments. Look aat my profile for my experiences during my 6 weeks of IL-2 (3 rounds).
i have went thru three rounds of IL-2 (six weeks of treatments) The main things my IL-2-Melanoma speialist Oncologist warned me about taking was blood thinners. They will give many shots of blood thinners duriig the week of each Il-2 hospitalization. You are welcome to read my experiences in my Profile. Jane is a wonderful lady with much great advice (She has now been NED for over 5 years since her IL-2 treatments!). The items I push the most is to drink a steady amount of fluids to keep the kidney function up. The urine output and a low blood pressure were my two main problems. I did learn later that black licorace raises ones blood pressure ( few people get high blood prssure from IL-2, be sure what is happening with your body to learn what effects you experience.) Food starts to taste poorly after about three days, but the taste ability returns about three-4 days after discharge. Do not to try to "man it out" when you starts to get cold feet/or chest (which usually turns into the RIGORS – extremely bad chills/shaking). If the nurses are told when this first starts they have meds which will readily control the worst of the side effects. Get the meds immediately!) Same goes for fealings of nausea.
Jane's info page:
http://melanomaresources.info/jane.html#homenotes
Good luck to you. IL-2 is tough, but is do-able. and still provide the best long term results of any melanoma treatment.
-
- June 27, 2012 at 7:31 pm
Lindsey, the maximum is 15 dodses in 5 days. The average is in the 7-8 range. It is quite likely that your body, kidneys,, blood pressure,etc will saay to skip a feww bags. I varied between 4 bags and 12 per week during my treatments. Look aat my profile for my experiences during my 6 weeks of IL-2 (3 rounds).
i have went thru three rounds of IL-2 (six weeks of treatments) The main things my IL-2-Melanoma speialist Oncologist warned me about taking was blood thinners. They will give many shots of blood thinners duriig the week of each Il-2 hospitalization. You are welcome to read my experiences in my Profile. Jane is a wonderful lady with much great advice (She has now been NED for over 5 years since her IL-2 treatments!). The items I push the most is to drink a steady amount of fluids to keep the kidney function up. The urine output and a low blood pressure were my two main problems. I did learn later that black licorace raises ones blood pressure ( few people get high blood prssure from IL-2, be sure what is happening with your body to learn what effects you experience.) Food starts to taste poorly after about three days, but the taste ability returns about three-4 days after discharge. Do not to try to "man it out" when you starts to get cold feet/or chest (which usually turns into the RIGORS – extremely bad chills/shaking). If the nurses are told when this first starts they have meds which will readily control the worst of the side effects. Get the meds immediately!) Same goes for fealings of nausea.
Jane's info page:
http://melanomaresources.info/jane.html#homenotes
Good luck to you. IL-2 is tough, but is do-able. and still provide the best long term results of any melanoma treatment.
-
- June 26, 2012 at 1:21 pm
Hi Ali, I am going to start my first treatment of IL-2 in 2 days. My Dr. tells me that I am going to have to take 15 doses in 5 days then I can rest at home 2 weeks. The only things I was told as far as side effects are that I will experience the worst flu I have ever had. Is there anything you can share with me?
Thank you,
Lindsey
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- June 26, 2012 at 1:21 pm
Hi Ali, I am going to start my first treatment of IL-2 in 2 days. My Dr. tells me that I am going to have to take 15 doses in 5 days then I can rest at home 2 weeks. The only things I was told as far as side effects are that I will experience the worst flu I have ever had. Is there anything you can share with me?
Thank you,
Lindsey
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- June 26, 2012 at 1:22 pm
Hi Ali, I am going to start my first treatment of IL-2 in 2 days. My Dr. tells me that I am going to have to take 15 doses in 5 days then I can rest at home 2 weeks. The only things I was told as far as side effects are that I will experience the worst flu I have ever had. Is there anything you can share with me?
Thank you,
Lindsey
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- June 26, 2012 at 1:22 pm
Hi Ali, I am going to start my first treatment of IL-2 in 2 days. My Dr. tells me that I am going to have to take 15 doses in 5 days then I can rest at home 2 weeks. The only things I was told as far as side effects are that I will experience the worst flu I have ever had. Is there anything you can share with me?
Thank you,
Lindsey
-
- June 26, 2012 at 1:22 pm
Hi Ali, I am going to start my first treatment of IL-2 in 2 days. My Dr. tells me that I am going to have to take 15 doses in 5 days then I can rest at home 2 weeks. The only things I was told as far as side effects are that I will experience the worst flu I have ever had. Is there anything you can share with me?
Thank you,
Lindsey
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- June 27, 2012 at 7:43 pm
Ali, Good to hear that you responded well. I got 20 months from my response and that let me get to other things in early 2009. The IL-2 can keep working much longer after the last treatment and even enhance other treatments if it does not provide the complete response we want. (My liver tumor have never started growing again!)
You go Lady, GO!
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- June 27, 2012 at 7:43 pm
Ali, Good to hear that you responded well. I got 20 months from my response and that let me get to other things in early 2009. The IL-2 can keep working much longer after the last treatment and even enhance other treatments if it does not provide the complete response we want. (My liver tumor have never started growing again!)
You go Lady, GO!
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- June 27, 2012 at 7:43 pm
Ali, Good to hear that you responded well. I got 20 months from my response and that let me get to other things in early 2009. The IL-2 can keep working much longer after the last treatment and even enhance other treatments if it does not provide the complete response we want. (My liver tumor have never started growing again!)
You go Lady, GO!
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