› Forums › General Melanoma Community › Questions Regarding Pegylated Interferon
- This topic has 18 replies, 5 voices, and was last updated 9 years, 10 months ago by
Keepingyourchinup.
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- August 13, 2015 at 6:49 pm
Hi Everyone,
So I have several questions…. I know a few of you on here have told me you received the pegylated interferon treatment but stopped it for mutliple reasons or chose not to go down that road. I started the treatment in June but have decided to stop it as I really don't like what it has done to my quality of life. I am stage 3A and this is really the only treatment I qualify for. I am NED for now but am a newly diagnosed melanoma patient, since April of 2015. I have lost 20 pounds, the fatigue is terrible, and I sleep at least 16 hours a day; I won't go into the rest of the symptoms that go along with this. I decided that I would just "watch and wait" for now as I don't see the statisitcal value in this drug and I would rather have a good quality of life back then to live like I have been since June. I originallly felt like a whimp for quitting but 5 years of feeling like this is not for me. There are pills to combat some of the side effects; I am on lexapro, zofran, ibuprofen, and they were going to prescribe an appetite stimulant before I said enough is enough. This is all very frustrating, which I am sure you can relate to.
Anyway, my question is how long was it before you started to feel like yourself again after stopping the treatment? Also, I know I have to follow up with my surgeon and oncologist for a specific plan but how often are you receiving PET scans? I had one in June and it was clear but I am not sure what the whole "watch and wait" plan is. I like to be prepared before I see my docs so I can make an educated decision in this process.
Thank you for any help that you can offer.
Kathy
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- August 13, 2015 at 10:20 pm
Hi Kathy, I made a very similiar decision back in 2012 after being on high dose Interferon for one month. My liver was not happy and I dropped about 17 pounds, but the part that made me decide to stop was how it changed my personality. I am always a bit of a pain in the back side, according to my wife!!! I couldn't look after myself, she had to drive me to appointments and every little bump in the road was driving me crazy. The crazy part was winning so as a family we decided to stop after 20 rounds of the drug. It took the rest of the summer to recover ( two months). My Oncologist did ct scans every 3 months for the next 9 months then switched to taking just an x-ray of thorax. From what I have learned there is no standard and each Ocologist is different in their approach to scanning. The one thing that I would push for say every 6 months even if you have to pay out of pocket is a Mri of the head. Catching any tumors while they are small in the head is important. I was able to put the weight back on no problem and some!!!!! Wishing you the best!!! Ed
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- August 13, 2015 at 10:20 pm
Hi Kathy, I made a very similiar decision back in 2012 after being on high dose Interferon for one month. My liver was not happy and I dropped about 17 pounds, but the part that made me decide to stop was how it changed my personality. I am always a bit of a pain in the back side, according to my wife!!! I couldn't look after myself, she had to drive me to appointments and every little bump in the road was driving me crazy. The crazy part was winning so as a family we decided to stop after 20 rounds of the drug. It took the rest of the summer to recover ( two months). My Oncologist did ct scans every 3 months for the next 9 months then switched to taking just an x-ray of thorax. From what I have learned there is no standard and each Ocologist is different in their approach to scanning. The one thing that I would push for say every 6 months even if you have to pay out of pocket is a Mri of the head. Catching any tumors while they are small in the head is important. I was able to put the weight back on no problem and some!!!!! Wishing you the best!!! Ed
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- August 13, 2015 at 10:20 pm
Hi Kathy, I made a very similiar decision back in 2012 after being on high dose Interferon for one month. My liver was not happy and I dropped about 17 pounds, but the part that made me decide to stop was how it changed my personality. I am always a bit of a pain in the back side, according to my wife!!! I couldn't look after myself, she had to drive me to appointments and every little bump in the road was driving me crazy. The crazy part was winning so as a family we decided to stop after 20 rounds of the drug. It took the rest of the summer to recover ( two months). My Oncologist did ct scans every 3 months for the next 9 months then switched to taking just an x-ray of thorax. From what I have learned there is no standard and each Ocologist is different in their approach to scanning. The one thing that I would push for say every 6 months even if you have to pay out of pocket is a Mri of the head. Catching any tumors while they are small in the head is important. I was able to put the weight back on no problem and some!!!!! Wishing you the best!!! Ed
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- August 14, 2015 at 11:29 am
Hi Kathy – took me a good couple of months to feel more like myself – give yourself some time.
Different places have different scan philosophies. Some hospitals/physicians don't scan unless you have symptoms and others will put you on a 3 or 6 month schedule for a time. It has been approx 10 years and I have only had 2 PET scans both after some worrisome symptoms.
good luck with your recovery.
Fen
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- August 14, 2015 at 11:29 am
Hi Kathy – took me a good couple of months to feel more like myself – give yourself some time.
Different places have different scan philosophies. Some hospitals/physicians don't scan unless you have symptoms and others will put you on a 3 or 6 month schedule for a time. It has been approx 10 years and I have only had 2 PET scans both after some worrisome symptoms.
good luck with your recovery.
Fen
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- August 15, 2015 at 1:53 am
Thank you so much for the replies! I truly appreciate your words of advice.
Ed: I have to share something… I do talk a bit but the anti-depressants I was on made me talk even more the week they finally kicked in. I couldn't stop complimenting strangers or talking and boy was it annoying! Even my family would ask me when I was going to bed… The following week I was back to feeling exhausted but still talking… I Can totally relate to not feeling like yourself as aggression started setting in. So I was a tired, talking, exhausted female…. Talk about scary 😉
have a great weekend everyone!
Kathy
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- August 15, 2015 at 1:53 am
Thank you so much for the replies! I truly appreciate your words of advice.
Ed: I have to share something… I do talk a bit but the anti-depressants I was on made me talk even more the week they finally kicked in. I couldn't stop complimenting strangers or talking and boy was it annoying! Even my family would ask me when I was going to bed… The following week I was back to feeling exhausted but still talking… I Can totally relate to not feeling like yourself as aggression started setting in. So I was a tired, talking, exhausted female…. Talk about scary 😉
have a great weekend everyone!
Kathy
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- August 15, 2015 at 1:53 am
Thank you so much for the replies! I truly appreciate your words of advice.
Ed: I have to share something… I do talk a bit but the anti-depressants I was on made me talk even more the week they finally kicked in. I couldn't stop complimenting strangers or talking and boy was it annoying! Even my family would ask me when I was going to bed… The following week I was back to feeling exhausted but still talking… I Can totally relate to not feeling like yourself as aggression started setting in. So I was a tired, talking, exhausted female…. Talk about scary 😉
have a great weekend everyone!
Kathy
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- August 14, 2015 at 11:29 am
Hi Kathy – took me a good couple of months to feel more like myself – give yourself some time.
Different places have different scan philosophies. Some hospitals/physicians don't scan unless you have symptoms and others will put you on a 3 or 6 month schedule for a time. It has been approx 10 years and I have only had 2 PET scans both after some worrisome symptoms.
good luck with your recovery.
Fen
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- August 15, 2015 at 11:43 pm
Hi Kathy,
I tried Sylatron on the recommendation of Dr. Sharfman at Johns Hopkins. He told me that it would also be a valid choice to just do "watch and wait," but I'm of the school of thought that I'll try anything that might help me.
One dose, and I was done. There was no way I was going to subject myself to those side effects! Even after that one dose, it was probably a month before I felt that I was back to my old self. I don't know if the recovery after multiple doses is longer, or not, since I only did the one.
I've seen a couple of things about ipi being considered as adjuvant therapy following a wide area excision. I hope for everybody's sake that's where they move. My melanoma came back last year, and I did the course of treatment with ipi. I can tell you that comparing the side effects of the two, I'd take ipi for the rest of my life before I'd take one more dose of interferon!
Best of luck to you!
Bill
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- August 15, 2015 at 11:43 pm
Hi Kathy,
I tried Sylatron on the recommendation of Dr. Sharfman at Johns Hopkins. He told me that it would also be a valid choice to just do "watch and wait," but I'm of the school of thought that I'll try anything that might help me.
One dose, and I was done. There was no way I was going to subject myself to those side effects! Even after that one dose, it was probably a month before I felt that I was back to my old self. I don't know if the recovery after multiple doses is longer, or not, since I only did the one.
I've seen a couple of things about ipi being considered as adjuvant therapy following a wide area excision. I hope for everybody's sake that's where they move. My melanoma came back last year, and I did the course of treatment with ipi. I can tell you that comparing the side effects of the two, I'd take ipi for the rest of my life before I'd take one more dose of interferon!
Best of luck to you!
Bill
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- August 18, 2015 at 11:49 pm
Hi Bill,
Thank you for sharing your story! I think it really helps to hear the paths everyone else has traveled. I am in Baltimore as well but am being treated at Mercy, who is working with Hopkins as they collaborate with the melanoma specialists. I see my surgeon on Monday and will discuss next steps regarding follow up. Ipi was one of the drugs I was really interested in for treatment but I am 3A so I don't qualify for that. Apparently I didn't have "enough cancer in my lymph node". On one hand I am glad; however, it was really aggravating to hear that statement. I am glad the side effects of ipi were much better than the interferon! Honestly, I think we are all playing the waiting game once you have the diagnosis. I know that I try not to worry too much about it as it really does create a lot of stress.
I wish you all the best!
Kathy
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- August 18, 2015 at 11:49 pm
Hi Bill,
Thank you for sharing your story! I think it really helps to hear the paths everyone else has traveled. I am in Baltimore as well but am being treated at Mercy, who is working with Hopkins as they collaborate with the melanoma specialists. I see my surgeon on Monday and will discuss next steps regarding follow up. Ipi was one of the drugs I was really interested in for treatment but I am 3A so I don't qualify for that. Apparently I didn't have "enough cancer in my lymph node". On one hand I am glad; however, it was really aggravating to hear that statement. I am glad the side effects of ipi were much better than the interferon! Honestly, I think we are all playing the waiting game once you have the diagnosis. I know that I try not to worry too much about it as it really does create a lot of stress.
I wish you all the best!
Kathy
-
- August 18, 2015 at 11:49 pm
Hi Bill,
Thank you for sharing your story! I think it really helps to hear the paths everyone else has traveled. I am in Baltimore as well but am being treated at Mercy, who is working with Hopkins as they collaborate with the melanoma specialists. I see my surgeon on Monday and will discuss next steps regarding follow up. Ipi was one of the drugs I was really interested in for treatment but I am 3A so I don't qualify for that. Apparently I didn't have "enough cancer in my lymph node". On one hand I am glad; however, it was really aggravating to hear that statement. I am glad the side effects of ipi were much better than the interferon! Honestly, I think we are all playing the waiting game once you have the diagnosis. I know that I try not to worry too much about it as it really does create a lot of stress.
I wish you all the best!
Kathy
-
- August 15, 2015 at 11:43 pm
Hi Kathy,
I tried Sylatron on the recommendation of Dr. Sharfman at Johns Hopkins. He told me that it would also be a valid choice to just do "watch and wait," but I'm of the school of thought that I'll try anything that might help me.
One dose, and I was done. There was no way I was going to subject myself to those side effects! Even after that one dose, it was probably a month before I felt that I was back to my old self. I don't know if the recovery after multiple doses is longer, or not, since I only did the one.
I've seen a couple of things about ipi being considered as adjuvant therapy following a wide area excision. I hope for everybody's sake that's where they move. My melanoma came back last year, and I did the course of treatment with ipi. I can tell you that comparing the side effects of the two, I'd take ipi for the rest of my life before I'd take one more dose of interferon!
Best of luck to you!
Bill
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