› Forums › General Melanoma Community › IL 2 and muscle loss and an update
- This topic has 15 replies, 3 voices, and was last updated 12 years, 5 months ago by
gabsound.
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- November 2, 2011 at 5:56 pm
I’ve finished my 4th round of biochemo and have probably dropped 10-15 lbs which seems to me to be almost all muscle. My oncologist did tell me that IL2 does metabolize muscle. Just adding this to the list of effects from IL 2.Unfortunately I still have a lump in my leg that did not go away with the treatments. I’ve been following this, since the last surgery July 1st with ultrasound as that is my job and I have access to a machine and my own leg. Originally thought was a hematoma and was getting smaller. Two new lumps are now seen right next to that area.
Pet/ct and brain MRI next week to see where we are at. Hopefully still at just in transit disease in the leg. The oncologist is talking maybe another surgery, at least for biopsy, and then he mentioned maybe IPI combined with something else (clinical trial maybe). He didn’t really want to speculate too much before all the facts are in hand.
It’s discouraging to say the least. Failed interferon and now biochemo. Dx in Jan / Feb this year. Ulcerated lesion, high mitotic rate of 10, micro met in one node w all other nodes clean. Not sure if my stage has changed to 3C.
BTW my sister w breast CA finished her chemo with nothing palpable left. She sees surgeon today to see what the plan is. She is doing well.
Keep up the good fight,
Julie in Las Vegas
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- November 2, 2011 at 10:09 pm
Hi Julie, where did you do biochemo? I finished 4 rounds at CPMC in San Francisco in September. How are you feeling? Biochemo kicked the crap out of me and I lost 40 pounds. My appetite came back about 2 weeks after my last round and now I'm eating anything I want. It did leave me with a little peripheral neuropathy in my feet. You may want to try a really good quality protien powder to hlep regain muscle mass, it's helped me. Did you do the 1 week in ICU then 2 weeks out? I am stage 4 with lung and bone mets as well as an involved axillary lymph node. I had no growth during my biochemo and am now on a clinical trial of P13k at UCSF. Take care of yourself and God Bless. Robert
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- November 4, 2011 at 12:59 am
Hi Robert,
I did the biochemo here in Las Vegas. Dr. Samlowski who is mealanoma specialist in Las Vegas uses st Rose San Martin hospital.
My biochemo used IL2, interferon, and Temador. Treatment were 4 weeks apart-5 days in hospital, then 3 more subcute injections of Interferon the following week. It did not use the other 2 commonly used chemo drugs because in my Dr's opinion, they just make you a whole lot more miserable without added benefit.
I'v lost a total of about 16 lbs since this all started in February. It seems to be coming off faster now. I really hope was the IL2 and not something more serious. I like the protein powder suggestion!
I'm glad you had stable disease during your treatments. My leg is worrying me, but have PET/CT set up for tomorrow am and brain MRI 1st thing Monday morning followed by Dr. appt on Tuesday.
Do you know what drug you are getting in your clinical trial?
Keep up the good fight,
Julie
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- November 4, 2011 at 12:59 am
Hi Robert,
I did the biochemo here in Las Vegas. Dr. Samlowski who is mealanoma specialist in Las Vegas uses st Rose San Martin hospital.
My biochemo used IL2, interferon, and Temador. Treatment were 4 weeks apart-5 days in hospital, then 3 more subcute injections of Interferon the following week. It did not use the other 2 commonly used chemo drugs because in my Dr's opinion, they just make you a whole lot more miserable without added benefit.
I'v lost a total of about 16 lbs since this all started in February. It seems to be coming off faster now. I really hope was the IL2 and not something more serious. I like the protein powder suggestion!
I'm glad you had stable disease during your treatments. My leg is worrying me, but have PET/CT set up for tomorrow am and brain MRI 1st thing Monday morning followed by Dr. appt on Tuesday.
Do you know what drug you are getting in your clinical trial?
Keep up the good fight,
Julie
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- November 4, 2011 at 12:59 am
Hi Robert,
I did the biochemo here in Las Vegas. Dr. Samlowski who is mealanoma specialist in Las Vegas uses st Rose San Martin hospital.
My biochemo used IL2, interferon, and Temador. Treatment were 4 weeks apart-5 days in hospital, then 3 more subcute injections of Interferon the following week. It did not use the other 2 commonly used chemo drugs because in my Dr's opinion, they just make you a whole lot more miserable without added benefit.
I'v lost a total of about 16 lbs since this all started in February. It seems to be coming off faster now. I really hope was the IL2 and not something more serious. I like the protein powder suggestion!
I'm glad you had stable disease during your treatments. My leg is worrying me, but have PET/CT set up for tomorrow am and brain MRI 1st thing Monday morning followed by Dr. appt on Tuesday.
Do you know what drug you are getting in your clinical trial?
Keep up the good fight,
Julie
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- November 2, 2011 at 10:09 pm
Hi Julie, where did you do biochemo? I finished 4 rounds at CPMC in San Francisco in September. How are you feeling? Biochemo kicked the crap out of me and I lost 40 pounds. My appetite came back about 2 weeks after my last round and now I'm eating anything I want. It did leave me with a little peripheral neuropathy in my feet. You may want to try a really good quality protien powder to hlep regain muscle mass, it's helped me. Did you do the 1 week in ICU then 2 weeks out? I am stage 4 with lung and bone mets as well as an involved axillary lymph node. I had no growth during my biochemo and am now on a clinical trial of P13k at UCSF. Take care of yourself and God Bless. Robert
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- November 2, 2011 at 10:09 pm
Hi Julie, where did you do biochemo? I finished 4 rounds at CPMC in San Francisco in September. How are you feeling? Biochemo kicked the crap out of me and I lost 40 pounds. My appetite came back about 2 weeks after my last round and now I'm eating anything I want. It did leave me with a little peripheral neuropathy in my feet. You may want to try a really good quality protien powder to hlep regain muscle mass, it's helped me. Did you do the 1 week in ICU then 2 weeks out? I am stage 4 with lung and bone mets as well as an involved axillary lymph node. I had no growth during my biochemo and am now on a clinical trial of P13k at UCSF. Take care of yourself and God Bless. Robert
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- November 3, 2011 at 4:36 am
Charlie
I did a different biochemo than everyone else. It was 4 rounds of 96 hr continuous infusion of IL2 (not sure of strength-total of 4 bags) along with 5 days of interferon injections subcutaeous and 4 days of oral Temador 320 mg.
I stayed in hospital for 5 days each time in ICU-same story as other high dose IL2 patients. Treatments were 4 weeks apart.
Did an US on my leg again today and the tumor appear to be multiplying. I'm freaking out. Scans scheduled 11-11, but calling dr in am.
SHI******,
Julie in Las Vegas
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- November 3, 2011 at 4:36 am
Charlie
I did a different biochemo than everyone else. It was 4 rounds of 96 hr continuous infusion of IL2 (not sure of strength-total of 4 bags) along with 5 days of interferon injections subcutaeous and 4 days of oral Temador 320 mg.
I stayed in hospital for 5 days each time in ICU-same story as other high dose IL2 patients. Treatments were 4 weeks apart.
Did an US on my leg again today and the tumor appear to be multiplying. I'm freaking out. Scans scheduled 11-11, but calling dr in am.
SHI******,
Julie in Las Vegas
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- November 3, 2011 at 4:36 am
Charlie
I did a different biochemo than everyone else. It was 4 rounds of 96 hr continuous infusion of IL2 (not sure of strength-total of 4 bags) along with 5 days of interferon injections subcutaeous and 4 days of oral Temador 320 mg.
I stayed in hospital for 5 days each time in ICU-same story as other high dose IL2 patients. Treatments were 4 weeks apart.
Did an US on my leg again today and the tumor appear to be multiplying. I'm freaking out. Scans scheduled 11-11, but calling dr in am.
SHI******,
Julie in Las Vegas
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