› Forums › General Melanoma Community › Questions regarding treatments!!
- This topic has 34 replies, 11 voices, and was last updated 12 years, 7 months ago by DeniseK.
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- August 9, 2011 at 12:15 am
Hi all!!
I'm going to see my oncologist tomorrow! Finally after 2 months since diagnosis and surgery!! Anywho I'm supposing that I'll start my treatments of Interferon soon.
A few questions about the process. I heard that I either need a port or a picc. Do they put this in on the first treatment day or before? About how long after I see my doctor can I expect to start? I really want to get this started and get it over with!! Can anyone tell me the process?? What about tests before??
Hi all!!
I'm going to see my oncologist tomorrow! Finally after 2 months since diagnosis and surgery!! Anywho I'm supposing that I'll start my treatments of Interferon soon.
A few questions about the process. I heard that I either need a port or a picc. Do they put this in on the first treatment day or before? About how long after I see my doctor can I expect to start? I really want to get this started and get it over with!! Can anyone tell me the process?? What about tests before??
I'll find out tomorrow but I have no patience! I wanna know before!!
Thanks,
Denise
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- August 9, 2011 at 12:26 am
Hi Denise,
I did a year of Interferon. I chose not to get a port or a pic. It was easier for me to just let them stick me with the IV each time I went. It all depends on how you feel about it. The pic only lasted a few days, so they would have to stick me twice a week. By getting a fresh IV each day, I didn't have to deal with the line sticking out of my arm. I teach, so it most likely would have annoyed me. I think it's just a personal decision each of us makes.
I'm sure you will start VERY soon because Interferon should be started withing 56 days (somewhere around that number) of your surgery. I didn't have any special tests prior to starting, just the regular blood tests right before the transfusions. They did them weekly during the high dose, and then monthly during the low dose.
Just remember to drink PLENTY of water. I hate it, but I drank about a gallon a day. For whatever reason, I enjoyed it when I was on Interferon. I also scheduled my infusions at 4:00; then, I went home and straight to bed to sleep through the chills and aches. It worked for me. I didn't miss a day of school.
Best of luck to you with your treatment. Please let me know if you need any additional information.
Tricia
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- August 9, 2011 at 12:26 am
Hi Denise,
I did a year of Interferon. I chose not to get a port or a pic. It was easier for me to just let them stick me with the IV each time I went. It all depends on how you feel about it. The pic only lasted a few days, so they would have to stick me twice a week. By getting a fresh IV each day, I didn't have to deal with the line sticking out of my arm. I teach, so it most likely would have annoyed me. I think it's just a personal decision each of us makes.
I'm sure you will start VERY soon because Interferon should be started withing 56 days (somewhere around that number) of your surgery. I didn't have any special tests prior to starting, just the regular blood tests right before the transfusions. They did them weekly during the high dose, and then monthly during the low dose.
Just remember to drink PLENTY of water. I hate it, but I drank about a gallon a day. For whatever reason, I enjoyed it when I was on Interferon. I also scheduled my infusions at 4:00; then, I went home and straight to bed to sleep through the chills and aches. It worked for me. I didn't miss a day of school.
Best of luck to you with your treatment. Please let me know if you need any additional information.
Tricia
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- August 9, 2011 at 1:04 am
Hi Denise. I am currently in my 9th month of interferon treatment. I chose to get a port placed for the infusion month. They put the port in surgically about a week before I started. It was not painful at all. It was very easy for the daily infusions. After I was done with the first month, they removed it. You do get put under for the placement and removal though. It left a small scar on my chest, but nothing compared to the others!
I wish you luck tomorrow. If you have any questions along the way, I'd be happy to help!
Michelle
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- August 9, 2011 at 1:04 am
Hi Denise. I am currently in my 9th month of interferon treatment. I chose to get a port placed for the infusion month. They put the port in surgically about a week before I started. It was not painful at all. It was very easy for the daily infusions. After I was done with the first month, they removed it. You do get put under for the placement and removal though. It left a small scar on my chest, but nothing compared to the others!
I wish you luck tomorrow. If you have any questions along the way, I'd be happy to help!
Michelle
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- August 9, 2011 at 1:07 am
Denise,
My PICC line was inserted on the Friday before I started and removed the last day of IV treatment. It stayed in the entire month. My husband had to wrap it with saran press and seal before every shower. Other than that it wasn't a big deal. It was cooler when I did IV's and I wore clothes that covered it when I wasn't getting treatment. My veins are really hard to get especially if I'm dehydrated so a PICC was the way to go for me. I also wanted it out the minute I was done with the IV's and the nurse was happy to pull it for me. It wasn't that big a deal getting it in…although she did hit a nerve…she told me that was the first time that had ever happened to her. Figures!
Good luck!
Amy S. in Michigan
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- August 9, 2011 at 1:07 am
Denise,
My PICC line was inserted on the Friday before I started and removed the last day of IV treatment. It stayed in the entire month. My husband had to wrap it with saran press and seal before every shower. Other than that it wasn't a big deal. It was cooler when I did IV's and I wore clothes that covered it when I wasn't getting treatment. My veins are really hard to get especially if I'm dehydrated so a PICC was the way to go for me. I also wanted it out the minute I was done with the IV's and the nurse was happy to pull it for me. It wasn't that big a deal getting it in…although she did hit a nerve…she told me that was the first time that had ever happened to her. Figures!
Good luck!
Amy S. in Michigan
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- August 9, 2011 at 1:26 am
Wow!! That's all really good information!! So you don't keep the port/picc in for the entire year? Do you have to keep the port dry like the picc? I'm leaning towards the picc because my surgery was on my right chest and I don't really want another scar, although the picc seems like a hassle!
As far as the 56 days, my surgeon kinda messed me up with that. With my insurance he knew that if he didn't refer me to San Francisco Melanoma Center first then I wouldn't get approved. He wanted the specialists to recommend the treatment options. So that really delayed seeing the oncologist locally. I'm not too far away though.
I have to travel to the treatment center so I won't be able to work but my boss is ok with it and once I finish the month long then I'm hoping to go back to work full time.
It's good to know that you didn't miss a day of school!!
I'll post tomorrow or the next day on what happened and when I start. I'm still debating on the whole picc or port thing though. I don't think I could handle someone poking me everyday! I would think that would be hard on your veins.
Thanks so much for the information!!
Denise
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- August 9, 2011 at 1:26 am
Wow!! That's all really good information!! So you don't keep the port/picc in for the entire year? Do you have to keep the port dry like the picc? I'm leaning towards the picc because my surgery was on my right chest and I don't really want another scar, although the picc seems like a hassle!
As far as the 56 days, my surgeon kinda messed me up with that. With my insurance he knew that if he didn't refer me to San Francisco Melanoma Center first then I wouldn't get approved. He wanted the specialists to recommend the treatment options. So that really delayed seeing the oncologist locally. I'm not too far away though.
I have to travel to the treatment center so I won't be able to work but my boss is ok with it and once I finish the month long then I'm hoping to go back to work full time.
It's good to know that you didn't miss a day of school!!
I'll post tomorrow or the next day on what happened and when I start. I'm still debating on the whole picc or port thing though. I don't think I could handle someone poking me everyday! I would think that would be hard on your veins.
Thanks so much for the information!!
Denise
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- August 9, 2011 at 1:34 am
Good luck Denise.
If you have not done so already, don't forget to discuss taking something for depression, as it is one of the most common side effects. Keep in mind that whatever drug you decide to take may take a few weeks to kick in.
May it go smoothly for you, and keep the board posted.
Michael
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- August 9, 2011 at 1:58 am
Thanks Michael. I've got that on my list of things to discuss with the doc!! I talked to this guy in San Fran and they gave him some type of prosac along with benedryl, ativan, and tylenol right into his IV. I'm a happy person by nature so I don't want to be depressed!!
Denise
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- August 9, 2011 at 1:58 am
Thanks Michael. I've got that on my list of things to discuss with the doc!! I talked to this guy in San Fran and they gave him some type of prosac along with benedryl, ativan, and tylenol right into his IV. I'm a happy person by nature so I don't want to be depressed!!
Denise
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- August 9, 2011 at 1:34 am
Good luck Denise.
If you have not done so already, don't forget to discuss taking something for depression, as it is one of the most common side effects. Keep in mind that whatever drug you decide to take may take a few weeks to kick in.
May it go smoothly for you, and keep the board posted.
Michael
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- August 9, 2011 at 2:37 am
I had a picc line – didn't hurt going in OR coming out. It's in for the hi-dose month and then removed..
Don't worry too much about that 56 day "window". I didn't start interferon for nearly three months after my surgery. Just because the original study was done within 55 days doesn't mean it wont' do you any good because you start later – it's just the way the study was done back then. I was trying to get into a clinical trial which didn't turn out well and this is why there was such a delay. It would be difficult to work that first month, I know I couldn't have done it but others here have worked and they were fine. Everyone is different so just take it one day at a time. I didn't do antidepressants either and I was fine – like I say, everyone is different.
Good luck to you. Let us know how you do.
DebbieH, stage IIIC, NED nearly 10 years after interferon and no scans.
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- August 9, 2011 at 3:00 am
Debbie,
You don't know how good it is to see that you've been NED for 10 years!! Congrats!! I'm hoping to join you in 10 years which would be 20 for you!! 🙂
So if you don't have a picc or port for the 11 months then where do you give yourself shots at? Can you keep the picc or port? I'm not really needle shy but I heard that your skin gets irritated from the shots.
Dr. Spitler in San Fran said the same thing you did about the 55 day window.
I've been taking all of this one day at a time since June 2nd so another year shouldn't be so bad.
Denise
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- August 9, 2011 at 3:00 am
Debbie,
You don't know how good it is to see that you've been NED for 10 years!! Congrats!! I'm hoping to join you in 10 years which would be 20 for you!! 🙂
So if you don't have a picc or port for the 11 months then where do you give yourself shots at? Can you keep the picc or port? I'm not really needle shy but I heard that your skin gets irritated from the shots.
Dr. Spitler in San Fran said the same thing you did about the 55 day window.
I've been taking all of this one day at a time since June 2nd so another year shouldn't be so bad.
Denise
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- August 9, 2011 at 2:37 am
I had a picc line – didn't hurt going in OR coming out. It's in for the hi-dose month and then removed..
Don't worry too much about that 56 day "window". I didn't start interferon for nearly three months after my surgery. Just because the original study was done within 55 days doesn't mean it wont' do you any good because you start later – it's just the way the study was done back then. I was trying to get into a clinical trial which didn't turn out well and this is why there was such a delay. It would be difficult to work that first month, I know I couldn't have done it but others here have worked and they were fine. Everyone is different so just take it one day at a time. I didn't do antidepressants either and I was fine – like I say, everyone is different.
Good luck to you. Let us know how you do.
DebbieH, stage IIIC, NED nearly 10 years after interferon and no scans.
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- August 9, 2011 at 4:04 am
The port goes in under your skin, so once the incision heals, you don't have to keep the area dry UNLESS it is "accessed". During my initial month, they accessed my port on Monday and removed the access needle on Friday. It's a right angle needle (huber needle) that sits pretty flat to your chest, with a small amount of tubing – fairly easy to cover. I found having the IV access in my upper chest was far easier to deal with than an IV sticking out of my hand or arm, but that's personal preference.
I kept my port thru my entire interferon year. A port has to be flushed monthly, but your port can be used to draw blood and that can serve as your monthly port flush. My rationale for keeping my port was simple – since I'm down to one arm for blood draws for the rest of my life, I wanted to do what I could to "save my veins" for as long as I could. I used the heck out of my port for everything I could – all blood draws, any IVs, any surgeries, etc.
Procedures for port removal vary. Some places knock you out, some places remove it under local anesthesia. It's probably up to the surgeon and/or your insurance.
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- August 9, 2011 at 4:16 am
This makes sense to me! I can't imagine installing a port for only 1 month. Since injections have to be done 3x's a week and blood drawn every 4-6 weeks. I'll have to ask if I can keep the port. If not I'll probably opt for the picc if it's only for one month. But still not sure!! I'll have to ask the doctors what they think. What side of your chest do they put the port in? I'm pretty chopped up on my right side so I don't think they'd put it there. I may not have a choice! I didn't think to ask that before.
Thanks for the information Chris. I'm leaning towards the port if I can keep it for a year and they can put it on the left side.
Denise
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- August 9, 2011 at 11:10 am
I believe the port can be in the full year but not the picc line – hopefully someone will chime in if I'm wrong about that. Also, they cannot do blood draws with a picc line, which was in my arm.
We would vary the shots (my husband did them for me) between my upper thighs and stomach. I had the pens that had a tiny needle so they really weren't as bad as I thought they would be and you'll be amazed at just what you can get used to.
My advice would be to have the infusions as late in the day as possible so you can sleep off any potential side effects. The whole infusion process took me around four hours between all the hydration and then the interferon. This is not something you want going in fast. Discuss the pros and cons of port versus picc line with your doctor. I wasn't given an option of a port so I only know what i read here. Good luck!!
DebbieH
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- August 9, 2011 at 12:19 pm
Denise,
I'll chime in on the port placement and longetivity of it
I've had my current port since 2004. It needs to be flushed every so often to keep it in good working order and is used for blood work and meds when needed. Newer ports can also be used for the IV's when getting CT scans and MRI's which is an added benefit especially if you have bad veins like me.
The one problem I had with my original port was that they started infusions as soon as they placed it. It never healed properly so I had it removed as soon as the IV month was over. A new one was put in a few years later but I made sure it had plenty of time to heal before treatments started and haven't had any problems with it.
Both my ports were placed on the right side but I think they have other placement options.
Best wishes,
Chris
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- August 9, 2011 at 12:19 pm
Denise,
I'll chime in on the port placement and longetivity of it
I've had my current port since 2004. It needs to be flushed every so often to keep it in good working order and is used for blood work and meds when needed. Newer ports can also be used for the IV's when getting CT scans and MRI's which is an added benefit especially if you have bad veins like me.
The one problem I had with my original port was that they started infusions as soon as they placed it. It never healed properly so I had it removed as soon as the IV month was over. A new one was put in a few years later but I made sure it had plenty of time to heal before treatments started and haven't had any problems with it.
Both my ports were placed on the right side but I think they have other placement options.
Best wishes,
Chris
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- August 9, 2011 at 11:10 am
I believe the port can be in the full year but not the picc line – hopefully someone will chime in if I'm wrong about that. Also, they cannot do blood draws with a picc line, which was in my arm.
We would vary the shots (my husband did them for me) between my upper thighs and stomach. I had the pens that had a tiny needle so they really weren't as bad as I thought they would be and you'll be amazed at just what you can get used to.
My advice would be to have the infusions as late in the day as possible so you can sleep off any potential side effects. The whole infusion process took me around four hours between all the hydration and then the interferon. This is not something you want going in fast. Discuss the pros and cons of port versus picc line with your doctor. I wasn't given an option of a port so I only know what i read here. Good luck!!
DebbieH
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- August 9, 2011 at 4:16 am
This makes sense to me! I can't imagine installing a port for only 1 month. Since injections have to be done 3x's a week and blood drawn every 4-6 weeks. I'll have to ask if I can keep the port. If not I'll probably opt for the picc if it's only for one month. But still not sure!! I'll have to ask the doctors what they think. What side of your chest do they put the port in? I'm pretty chopped up on my right side so I don't think they'd put it there. I may not have a choice! I didn't think to ask that before.
Thanks for the information Chris. I'm leaning towards the port if I can keep it for a year and they can put it on the left side.
Denise
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- August 9, 2011 at 4:04 am
The port goes in under your skin, so once the incision heals, you don't have to keep the area dry UNLESS it is "accessed". During my initial month, they accessed my port on Monday and removed the access needle on Friday. It's a right angle needle (huber needle) that sits pretty flat to your chest, with a small amount of tubing – fairly easy to cover. I found having the IV access in my upper chest was far easier to deal with than an IV sticking out of my hand or arm, but that's personal preference.
I kept my port thru my entire interferon year. A port has to be flushed monthly, but your port can be used to draw blood and that can serve as your monthly port flush. My rationale for keeping my port was simple – since I'm down to one arm for blood draws for the rest of my life, I wanted to do what I could to "save my veins" for as long as I could. I used the heck out of my port for everything I could – all blood draws, any IVs, any surgeries, etc.
Procedures for port removal vary. Some places knock you out, some places remove it under local anesthesia. It's probably up to the surgeon and/or your insurance.
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- August 10, 2011 at 1:52 am
I did the port in my chest for the 1 month infusions and glad I did. You hardly notice it there and you dont have to keep it dry or really any care while it is in. Just my opinion. I also do not like needles. My husband does my shots 3 times a week and I cant even watch. I freeze my stonach with frozen gel pad and I cant feel the shot at all. The interferon stings a little but not to bad. I get the shots in my stomach and I have bruised a couple times. My husband is really good at giving my the stots. 2 more months to go. Good luck to you.
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- August 10, 2011 at 1:52 am
I did the port in my chest for the 1 month infusions and glad I did. You hardly notice it there and you dont have to keep it dry or really any care while it is in. Just my opinion. I also do not like needles. My husband does my shots 3 times a week and I cant even watch. I freeze my stonach with frozen gel pad and I cant feel the shot at all. The interferon stings a little but not to bad. I get the shots in my stomach and I have bruised a couple times. My husband is really good at giving my the stots. 2 more months to go. Good luck to you.
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- August 10, 2011 at 2:17 am
Denise,I hope your doctor appointment went well today. I begin my Interferon treatments on Monday. I will be doing my infusions at a different campus than the hospital as it will be much more convenient for me. I meet with the doctor at that clinic tomorrow and will get more details on time of treatment, etc. I’ve seen different information on this site about length of time it takes to be infused. I thought I would only be ere an hour, but some were there several hours. I will be glad to get that clarified tomorrow. I am planning to take all of next week off work. I’m told that I should know by the end of the first week if I think I will be able to work and take the treatments. That is what worries me the most. I get my PICC line on Friday.
Let’s keep in touch during our journey. It will be nice to have someone to talk to who is going through the same thing.
Cyndy
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- August 11, 2011 at 9:57 pm
Hi Cyndy,
I too am starting my treatments on Monday. I just got a call and I'm having my PICC line put in on Saturday. My doctor and I discussed the pros and cons of PICC vs PORT and I decided on PICC. I don't want a PORT for only 1 month!! They will leave the PICC in for the 1 month only and he said the at home injections would be in my stomache or arm, whereever I decide. I've taken everyones advice and asked for the latest appt in the afternoon so I'll be getting my treatments around 3pm everyday.
I'm taking off the whole month of high dose!! I know some have worked but I have to travel to get the treatments.
I'm scared and anxious at the same time!! I'll be glad when this is over! I swear I never knew how bad someones health could affect their lives until now!!
Are you on FB Cyndy?
It's easier for me to post there and message people through my phone.
Look up Denise Orff Kirley.
Thanks everyone for your input and help.
Denise
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- August 11, 2011 at 9:57 pm
Hi Cyndy,
I too am starting my treatments on Monday. I just got a call and I'm having my PICC line put in on Saturday. My doctor and I discussed the pros and cons of PICC vs PORT and I decided on PICC. I don't want a PORT for only 1 month!! They will leave the PICC in for the 1 month only and he said the at home injections would be in my stomache or arm, whereever I decide. I've taken everyones advice and asked for the latest appt in the afternoon so I'll be getting my treatments around 3pm everyday.
I'm taking off the whole month of high dose!! I know some have worked but I have to travel to get the treatments.
I'm scared and anxious at the same time!! I'll be glad when this is over! I swear I never knew how bad someones health could affect their lives until now!!
Are you on FB Cyndy?
It's easier for me to post there and message people through my phone.
Look up Denise Orff Kirley.
Thanks everyone for your input and help.
Denise
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- August 10, 2011 at 2:17 am
Denise,I hope your doctor appointment went well today. I begin my Interferon treatments on Monday. I will be doing my infusions at a different campus than the hospital as it will be much more convenient for me. I meet with the doctor at that clinic tomorrow and will get more details on time of treatment, etc. I’ve seen different information on this site about length of time it takes to be infused. I thought I would only be ere an hour, but some were there several hours. I will be glad to get that clarified tomorrow. I am planning to take all of next week off work. I’m told that I should know by the end of the first week if I think I will be able to work and take the treatments. That is what worries me the most. I get my PICC line on Friday.
Let’s keep in touch during our journey. It will be nice to have someone to talk to who is going through the same thing.
Cyndy
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