[email protected]

I was diagnosed stage 3 with micromets in my lymph node. I had all the nodes removed and did a year of Interferon. That was all back in 2000 so this May it will be 19 years! I haven't had any problems or issues all these years. Many people who have been NED for numerous years no longer visit MPIP. So there are probably tons of other stories to be told but those people are out enjoying life! Best of luck!

Take care!

Cara

Michael,

So glad for your good news! I do remember how hard it was when you want them to do more. Believe it or not, it does get easier to take the further out you get. After I was 10 years out, my onc wanted to stop everything. I was such a pain that he has learned that at least a chest Xray yearly keeps me from complaining! ha

Best of luck with Dr Wong. Hopefully a full work up with him will give you some comfort.

Take care!

Cara 

Michael,

So glad for your good news! I do remember how hard it was when you want them to do more. Believe it or not, it does get easier to take the further out you get. After I was 10 years out, my onc wanted to stop everything. I was such a pain that he has learned that at least a chest Xray yearly keeps me from complaining! ha

Best of luck with Dr Wong. Hopefully a full work up with him will give you some comfort.

Take care!

Cara 

Michael,

So glad for your good news! I do remember how hard it was when you want them to do more. Believe it or not, it does get easier to take the further out you get. After I was 10 years out, my onc wanted to stop everything. I was such a pain that he has learned that at least a chest Xray yearly keeps me from complaining! ha

Best of luck with Dr Wong. Hopefully a full work up with him will give you some comfort.

Take care!

Cara 

Debbie,

Hi! Glad to see that you are doing well after all these years! It is always good for "newbies" to see a post from someone that has this many years of NED behind them, especially those wondering about Interferon.

It was good to hear from you!

Take care!

Cara

Debbie,

Hi! Glad to see that you are doing well after all these years! It is always good for "newbies" to see a post from someone that has this many years of NED behind them, especially those wondering about Interferon.

It was good to hear from you!

Take care!

Cara

Debbie,

Hi! Glad to see that you are doing well after all these years! It is always good for "newbies" to see a post from someone that has this many years of NED behind them, especially those wondering about Interferon.

It was good to hear from you!

Take care!

Cara

I totally AGREE that Interferon DOES boost the immune system. As a15 year stage 3 survivor who did a year of Interferon, I feel that I know what I'm talking about. Interferon is a biological agent that your body produces naturally. The thought process is that it revs up the immune system in hopes your body will destroy the cancerous cells. Melanoma has one of the highest rates of spontaneous remission.

During the 4th month of my year of treatment, a large mass appeared in the middle of my chest on a CT scan. Not wanting to leave potential mm inside me, I was referred to a thoracic surgeon to see about a biopsy. The mass was behind my breast bone and the only way to get to it was to crack the bone. While I was ready to go, luckily the surgeon had a trip planned and I had to wait 3 weeks. 

My oncologist said he didn't think it was mm but my thymus gland. The gland is typically absorbed in the body by age 18. My onc felt my immune system was on overdrive and it popped up. To prove his theory, I went off Interferon for a week and took high dose steroids instead. A CT scan a week after that showed NO mass. Hence, my doctor was correct! As soon as I was back on Interferon, the mass popped back up and could even be seen slightly on CT scans as long as 2 years later.

The main reason for my post is to warn those readers who are thinking about Interferon to take the negative comments of posters with a grain of salt. Unless a person has done Interferon or knows someone personally, they are just giving their "opinion". Interferon is not chemo but a form of immunotherapy. My 8 years as the volunteer treasurer for MRF gave me plenty of opportunity to meet numerous doctors and researchers that gave me more information about mm than the average joe knows.

Cara

I totally AGREE that Interferon DOES boost the immune system. As a15 year stage 3 survivor who did a year of Interferon, I feel that I know what I'm talking about. Interferon is a biological agent that your body produces naturally. The thought process is that it revs up the immune system in hopes your body will destroy the cancerous cells. Melanoma has one of the highest rates of spontaneous remission.

During the 4th month of my year of treatment, a large mass appeared in the middle of my chest on a CT scan. Not wanting to leave potential mm inside me, I was referred to a thoracic surgeon to see about a biopsy. The mass was behind my breast bone and the only way to get to it was to crack the bone. While I was ready to go, luckily the surgeon had a trip planned and I had to wait 3 weeks. 

My oncologist said he didn't think it was mm but my thymus gland. The gland is typically absorbed in the body by age 18. My onc felt my immune system was on overdrive and it popped up. To prove his theory, I went off Interferon for a week and took high dose steroids instead. A CT scan a week after that showed NO mass. Hence, my doctor was correct! As soon as I was back on Interferon, the mass popped back up and could even be seen slightly on CT scans as long as 2 years later.

The main reason for my post is to warn those readers who are thinking about Interferon to take the negative comments of posters with a grain of salt. Unless a person has done Interferon or knows someone personally, they are just giving their "opinion". Interferon is not chemo but a form of immunotherapy. My 8 years as the volunteer treasurer for MRF gave me plenty of opportunity to meet numerous doctors and researchers that gave me more information about mm than the average joe knows.

Cara

I totally AGREE that Interferon DOES boost the immune system. As a15 year stage 3 survivor who did a year of Interferon, I feel that I know what I'm talking about. Interferon is a biological agent that your body produces naturally. The thought process is that it revs up the immune system in hopes your body will destroy the cancerous cells. Melanoma has one of the highest rates of spontaneous remission.

During the 4th month of my year of treatment, a large mass appeared in the middle of my chest on a CT scan. Not wanting to leave potential mm inside me, I was referred to a thoracic surgeon to see about a biopsy. The mass was behind my breast bone and the only way to get to it was to crack the bone. While I was ready to go, luckily the surgeon had a trip planned and I had to wait 3 weeks. 

My oncologist said he didn't think it was mm but my thymus gland. The gland is typically absorbed in the body by age 18. My onc felt my immune system was on overdrive and it popped up. To prove his theory, I went off Interferon for a week and took high dose steroids instead. A CT scan a week after that showed NO mass. Hence, my doctor was correct! As soon as I was back on Interferon, the mass popped back up and could even be seen slightly on CT scans as long as 2 years later.

The main reason for my post is to warn those readers who are thinking about Interferon to take the negative comments of posters with a grain of salt. Unless a person has done Interferon or knows someone personally, they are just giving their "opinion". Interferon is not chemo but a form of immunotherapy. My 8 years as the volunteer treasurer for MRF gave me plenty of opportunity to meet numerous doctors and researchers that gave me more information about mm than the average joe knows.

Cara

I was dx stage 3 in June, 2000 with micromets in the sentinal node. I had a total node removal and then did the year treatment of Interferon. I continue to be NED (with NO issues ever) for 15 YEARS!!! So was it the node dissection, Interferon, was I just lucky? I really don't care which one it was but I would do NOTHING different if I had to do it over again!

I'm all for looking for something better than Interferon if you can find it and it works for you. But I would ALWAYS recommend doing SOMETHING other than watch and wait!! Why people have to go out of their way to give unwanted advice when Jenny clearly said she only wanted support is beyond my wildest imagination. 

As my mom always said, if you can't say anything nice, don't say anything at all!!

Jenny, best of luck during your treatment. Now that you have  made your decision, stand behind it 110% and don't look back! I was able to drive myself to all my appointments but have to admit there were times I'm not sure how I made it home because I was so drowsy. I worked as much as I could during the high dose but it may not have been more than 5 hours a day. During the next 11 months, I typically put in @ 30 hours. I was able to keep up with the normal routines of my then 5 and 7 year old kids. 

Good luck and take care!

Cara

I was dx stage 3 in June, 2000 with micromets in the sentinal node. I had a total node removal and then did the year treatment of Interferon. I continue to be NED (with NO issues ever) for 15 YEARS!!! So was it the node dissection, Interferon, was I just lucky? I really don't care which one it was but I would do NOTHING different if I had to do it over again!

I'm all for looking for something better than Interferon if you can find it and it works for you. But I would ALWAYS recommend doing SOMETHING other than watch and wait!! Why people have to go out of their way to give unwanted advice when Jenny clearly said she only wanted support is beyond my wildest imagination. 

As my mom always said, if you can't say anything nice, don't say anything at all!!

Jenny, best of luck during your treatment. Now that you have  made your decision, stand behind it 110% and don't look back! I was able to drive myself to all my appointments but have to admit there were times I'm not sure how I made it home because I was so drowsy. I worked as much as I could during the high dose but it may not have been more than 5 hours a day. During the next 11 months, I typically put in @ 30 hours. I was able to keep up with the normal routines of my then 5 and 7 year old kids. 

Good luck and take care!

Cara

I was dx stage 3 in June, 2000 with micromets in the sentinal node. I had a total node removal and then did the year treatment of Interferon. I continue to be NED (with NO issues ever) for 15 YEARS!!! So was it the node dissection, Interferon, was I just lucky? I really don't care which one it was but I would do NOTHING different if I had to do it over again!

I'm all for looking for something better than Interferon if you can find it and it works for you. But I would ALWAYS recommend doing SOMETHING other than watch and wait!! Why people have to go out of their way to give unwanted advice when Jenny clearly said she only wanted support is beyond my wildest imagination. 

As my mom always said, if you can't say anything nice, don't say anything at all!!

Jenny, best of luck during your treatment. Now that you have  made your decision, stand behind it 110% and don't look back! I was able to drive myself to all my appointments but have to admit there were times I'm not sure how I made it home because I was so drowsy. I worked as much as I could during the high dose but it may not have been more than 5 hours a day. During the next 11 months, I typically put in @ 30 hours. I was able to keep up with the normal routines of my then 5 and 7 year old kids. 

Good luck and take care!

Cara

Courtney,

in 6 days, I will be 15 years out from my orig stage 3 dx. I had micro amounts of mm in my sentinel node in my right arm and had a full node dissection. I went through the year of Interferon. The first month was 5 days a week of IV done at my doctor's office. It usually took @ 3 hours each day but a few days it was more like 6. I then gave myself shots 3 days a week for the next 11 months. At the time I was offered Interferon and a double blinded study where I may not get the drug. At the time I was 34 with two kids aged 5 & 7. I would NOT take the chance of getting a placebo knowing that if my mm ever came back I would never be able to forgive myself.

I was one of the lucky ones that had a fairly easy time during the year. I was nauseous a lot of the time and it seemed like a headache for a year. But I was able to keep up with the regular routines of my kids and still work 35 hours a week as an accountant. Some days sucked more than others but it was certainly tolerable for me. I do personally know of others that went through the treatment that were completely debilitated during the year so I do know it can be rough. 

I would advocate to look into other options as now there are many other ones that aren't as toxic. However, if you aren't able to find something else that you are comfortable with, I would certainly give Interferon a try over "watch and wait". There had been the thought that it is the month of high dose Interferon that provides the most benefit. If you could at least tolerate it for the first month, you may get what is necessary. And you may be one that is able to get through the year without much trouble.

I found this bulletin board 6 months after my dx and have been reading it every day since. You will find a lot of negative views regarding Inteferon. I would caution you I have noticed through the years many of those come from people that have "heard" Interferon has bad side effects but have not experienced them personally. I certainly encourage those that did have a negative experience to put it out there so newly dx people know the potential side effects but also wish those without experience would not try to discourage people who don't have another good option. Many people who no longer have active disease don't frequent the board as often so you may not see a fair representation of those who had a postive experience with a treatment.

My motto has been once you choose your treatment stand behind it 110% and don't look back. You never win the would of, could of, should of game. I was a few months into my year of Interferon when I read of additional trials that I might have qualified for. i was MAD that my oncologist hadn't given me any other options. That was when I decided I HAD to believe I had made the best choice given my options and move forward. 

Was it the Interferon or node dissection that has rendered me NED for 15 years? I don't know nor do I care! All I can say is that I would do the same thing over again.

Best of luck with whatever treatment you decide. Please gather the courage to speak up and ask whatever questions you have and don't be afraid to question anything you don't understand. For me, the unknown is too scary. Give me the facts and let me come up with a plan. You feel so much more in control.

Take care!

Cara

Courtney,

in 6 days, I will be 15 years out from my orig stage 3 dx. I had micro amounts of mm in my sentinel node in my right arm and had a full node dissection. I went through the year of Interferon. The first month was 5 days a week of IV done at my doctor's office. It usually took @ 3 hours each day but a few days it was more like 6. I then gave myself shots 3 days a week for the next 11 months. At the time I was offered Interferon and a double blinded study where I may not get the drug. At the time I was 34 with two kids aged 5 & 7. I would NOT take the chance of getting a placebo knowing that if my mm ever came back I would never be able to forgive myself.

I was one of the lucky ones that had a fairly easy time during the year. I was nauseous a lot of the time and it seemed like a headache for a year. But I was able to keep up with the regular routines of my kids and still work 35 hours a week as an accountant. Some days sucked more than others but it was certainly tolerable for me. I do personally know of others that went through the treatment that were completely debilitated during the year so I do know it can be rough. 

I would advocate to look into other options as now there are many other ones that aren't as toxic. However, if you aren't able to find something else that you are comfortable with, I would certainly give Interferon a try over "watch and wait". There had been the thought that it is the month of high dose Interferon that provides the most benefit. If you could at least tolerate it for the first month, you may get what is necessary. And you may be one that is able to get through the year without much trouble.

I found this bulletin board 6 months after my dx and have been reading it every day since. You will find a lot of negative views regarding Inteferon. I would caution you I have noticed through the years many of those come from people that have "heard" Interferon has bad side effects but have not experienced them personally. I certainly encourage those that did have a negative experience to put it out there so newly dx people know the potential side effects but also wish those without experience would not try to discourage people who don't have another good option. Many people who no longer have active disease don't frequent the board as often so you may not see a fair representation of those who had a postive experience with a treatment.

My motto has been once you choose your treatment stand behind it 110% and don't look back. You never win the would of, could of, should of game. I was a few months into my year of Interferon when I read of additional trials that I might have qualified for. i was MAD that my oncologist hadn't given me any other options. That was when I decided I HAD to believe I had made the best choice given my options and move forward. 

Was it the Interferon or node dissection that has rendered me NED for 15 years? I don't know nor do I care! All I can say is that I would do the same thing over again.

Best of luck with whatever treatment you decide. Please gather the courage to speak up and ask whatever questions you have and don't be afraid to question anything you don't understand. For me, the unknown is too scary. Give me the facts and let me come up with a plan. You feel so much more in control.

Take care!

Cara