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- This topic has 12 replies, 6 voices, and was last updated 13 years, 4 months ago by CKasper.
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- August 28, 2011 at 8:52 pm
So, i started Interferon in May, sub q in june. Two weeks ago i started to feel like someone sucked the life out of me. I missed a couple days of work. Weak, nauseated, headache and sooo tired. I ended up passing out in the bathroom, giiving myself a black out. Went to doc. He said take a break, stop tretment for a week and restart at lower dose. He said my liver functions were up, lost ten percent of body weight, blood counts were low. Hbg and wbc. So i went from 12 units to restarting at 6 units. My queation is, is it still even effective??So, i started Interferon in May, sub q in june. Two weeks ago i started to feel like someone sucked the life out of me. I missed a couple days of work. Weak, nauseated, headache and sooo tired. I ended up passing out in the bathroom, giiving myself a black out. Went to doc. He said take a break, stop tretment for a week and restart at lower dose. He said my liver functions were up, lost ten percent of body weight, blood counts were low. Hbg and wbc. So i went from 12 units to restarting at 6 units. My queation is, is it still even effective?? He said if i had the same effects then we would have to quit. I dont want that. I want to know i did everything to prevent it from coming back. Any thought??
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- August 28, 2011 at 9:20 pm
I have that same question. I went from 3 injections a week to
2 injections week early on. I’m now 9 months in to the ld. I have felt the same you you described often, but never blacked out but have come close. all my levels have been acceptable so the onc has seen no reason to stop the interferon.Scot
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- August 28, 2011 at 9:20 pm
I have that same question. I went from 3 injections a week to
2 injections week early on. I’m now 9 months in to the ld. I have felt the same you you described often, but never blacked out but have come close. all my levels have been acceptable so the onc has seen no reason to stop the interferon.Scot
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- August 29, 2011 at 1:20 am
6 units is still a kick in the butt! I started in January at 36 units, it was cut to 18 after having problems like you have with bloodwork. It was cut in half again, so I was down to 9 and just last week she cut it to 6. I asked my onc the very same question, and she said it was definitely still a big enough dose to continue and would still be a kick in the butt! I have felt a ton better with the lower dose, but still tired and have horrible headaches. With the dose reductions, I've noticed that I feel good for about a month after the reduction, then my body gets used to that dose and the side effects come back in full force. Your body will tell you when it's time to quit. Give it everything you've got, and when the time comes to stop the treatment, then that's what you do…knowing you gave it your best.
Take care,
Michelle
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- August 29, 2011 at 1:20 am
6 units is still a kick in the butt! I started in January at 36 units, it was cut to 18 after having problems like you have with bloodwork. It was cut in half again, so I was down to 9 and just last week she cut it to 6. I asked my onc the very same question, and she said it was definitely still a big enough dose to continue and would still be a kick in the butt! I have felt a ton better with the lower dose, but still tired and have horrible headaches. With the dose reductions, I've noticed that I feel good for about a month after the reduction, then my body gets used to that dose and the side effects come back in full force. Your body will tell you when it's time to quit. Give it everything you've got, and when the time comes to stop the treatment, then that's what you do…knowing you gave it your best.
Take care,
Michelle
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- August 29, 2011 at 11:26 am
Welcome to our forum. I have had a look at your profile and couldn't find much information regarding your melanoma history. I wonder if you are seeing an oncologist who specialises in melanoma? Have had a CT or a PET scan recently?
The use of interferon is very controversial these days, as it is an old treatment that has questionable efficacy. Unfortunately, it has serious side effects in some people. However, some doctors continue to recommend it because that is what they have been doing for a long time.
Melanoma research is advancing rapidly, and there are newer drugs and treatment appraoches that are looking promising. Many of these are available through clinical trials.
Hope this helps.
Frank from Australia
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- August 29, 2011 at 11:26 am
Welcome to our forum. I have had a look at your profile and couldn't find much information regarding your melanoma history. I wonder if you are seeing an oncologist who specialises in melanoma? Have had a CT or a PET scan recently?
The use of interferon is very controversial these days, as it is an old treatment that has questionable efficacy. Unfortunately, it has serious side effects in some people. However, some doctors continue to recommend it because that is what they have been doing for a long time.
Melanoma research is advancing rapidly, and there are newer drugs and treatment appraoches that are looking promising. Many of these are available through clinical trials.
Hope this helps.
Frank from Australia
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- August 29, 2011 at 6:33 pm
Well, it's a personal decision, but I believe every person gets to a point where they have to weigh whether interferon is doing them more harm than good. MANY people on this forum have done just the high dose infusion phase.
I think all of us who have chosen to do interferon have pushed the envelope, trying to get in as much as possible. Sometimes going a little too far. A few months after I quit my self injections (9 months in) I finally admitted to myself that I should have quit about 5 months into injections.
Once you have decided to quit, then just let it go, and don't waste time second guessing. You've already done a lot of interferon, which has limited value to begin with, and you may have already sucked up all that it has to offer.
I do know ohters here who did this same thing, took a break and returned at half dosage, and completed their year with lower side effects. Maybe that will be the way for you.
whatever you decide, good luck to you!
dian in spokane
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- August 29, 2011 at 6:33 pm
Well, it's a personal decision, but I believe every person gets to a point where they have to weigh whether interferon is doing them more harm than good. MANY people on this forum have done just the high dose infusion phase.
I think all of us who have chosen to do interferon have pushed the envelope, trying to get in as much as possible. Sometimes going a little too far. A few months after I quit my self injections (9 months in) I finally admitted to myself that I should have quit about 5 months into injections.
Once you have decided to quit, then just let it go, and don't waste time second guessing. You've already done a lot of interferon, which has limited value to begin with, and you may have already sucked up all that it has to offer.
I do know ohters here who did this same thing, took a break and returned at half dosage, and completed their year with lower side effects. Maybe that will be the way for you.
whatever you decide, good luck to you!
dian in spokane
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- August 30, 2011 at 1:44 am
Sorry your treatment has knocked you down so hard. You are very brave to try this treatment…I was too afraid, and went another direction. But I just wanted to wish you well. Maybe taking a break and doing the smaller dose will help you to feel better.
I was about the same age you are at diagnosis (in 1993), with a husband and three children. I thought life was over, but then went 10 1/2 yrs with NED. Then had a reoccurrence, but have been fine now for many years. The fear does not completely go away. Scars tend to remind me daily, but the feeling of dread doesn't last forever. Days are filled with good and bad, but when you get to see the good, the bad definately takes a back seat. Watch your children, hug your husband, smell a flower, watch a thunderstorm and know that life is just more powerful than you are. Hopefully you will have more good moments than bad.
Good luck with your treatment plan. Keep fighting and enjoy each day with your beautiful kids and lucky husband. I will keep you in my prayers. Beth 3/B
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- August 30, 2011 at 1:44 am
Sorry your treatment has knocked you down so hard. You are very brave to try this treatment…I was too afraid, and went another direction. But I just wanted to wish you well. Maybe taking a break and doing the smaller dose will help you to feel better.
I was about the same age you are at diagnosis (in 1993), with a husband and three children. I thought life was over, but then went 10 1/2 yrs with NED. Then had a reoccurrence, but have been fine now for many years. The fear does not completely go away. Scars tend to remind me daily, but the feeling of dread doesn't last forever. Days are filled with good and bad, but when you get to see the good, the bad definately takes a back seat. Watch your children, hug your husband, smell a flower, watch a thunderstorm and know that life is just more powerful than you are. Hopefully you will have more good moments than bad.
Good luck with your treatment plan. Keep fighting and enjoy each day with your beautiful kids and lucky husband. I will keep you in my prayers. Beth 3/B
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- September 2, 2011 at 12:52 am
I'm sorry for your problems with Interferon. I took it in 2006 and blacked out for 4 to 5 days never to take it again. I think its a horrible drug. After my look of dead woman walking, I met a herbaist who set me up with a protocal using herbs. Two weeks later less taking absolutely no interferon I looked good and I had 7 lesions, in the winter 5 months later I had no lesions. The Doc's say it was the high dose interferon, but I think its the herbs and keeping of though process of being pissed off the disease came back. I only got to
Anger in the Anger, Denial, Bargaining Acceptance and death. Maybe that's why I'm still here since 1984. Who knows its a weird disease.
Anger at the disease. My mother had a breast removed in 1998, afterward she refused any other treatment. She told me she never got past anger. She's still here too.
Pleasse be positive and strong…..we all want you to be around for awhile.
My profile: 2 areas of Mel.in 1984. Refused treatment.
Came back real bad in 2005 I think 3 B
Had surgery 2006 and Inf therapy sumer 2006
Had brain tumor and surgery in 2007
2009 They said it was in my upper colon.
2010 by the time they did the upper colonoscopy, lesion disappeared.
2010 everything bad happened to me I almost died.
Now in the winter of 2010 my husband of 36 years left me for a girl 20 years younger than myself.. He lefit me with no money, no heating fuel, no food, and a bunch of bills and on top of that what is there?
So I lost my marriage of 36 years because of Melanoma.
Its a tough disease….be tough and fight it. Get Pissed Off.
c
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- September 2, 2011 at 12:52 am
I'm sorry for your problems with Interferon. I took it in 2006 and blacked out for 4 to 5 days never to take it again. I think its a horrible drug. After my look of dead woman walking, I met a herbaist who set me up with a protocal using herbs. Two weeks later less taking absolutely no interferon I looked good and I had 7 lesions, in the winter 5 months later I had no lesions. The Doc's say it was the high dose interferon, but I think its the herbs and keeping of though process of being pissed off the disease came back. I only got to
Anger in the Anger, Denial, Bargaining Acceptance and death. Maybe that's why I'm still here since 1984. Who knows its a weird disease.
Anger at the disease. My mother had a breast removed in 1998, afterward she refused any other treatment. She told me she never got past anger. She's still here too.
Pleasse be positive and strong…..we all want you to be around for awhile.
My profile: 2 areas of Mel.in 1984. Refused treatment.
Came back real bad in 2005 I think 3 B
Had surgery 2006 and Inf therapy sumer 2006
Had brain tumor and surgery in 2007
2009 They said it was in my upper colon.
2010 by the time they did the upper colonoscopy, lesion disappeared.
2010 everything bad happened to me I almost died.
Now in the winter of 2010 my husband of 36 years left me for a girl 20 years younger than myself.. He lefit me with no money, no heating fuel, no food, and a bunch of bills and on top of that what is there?
So I lost my marriage of 36 years because of Melanoma.
Its a tough disease….be tough and fight it. Get Pissed Off.
c
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