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scan results in

Forums General Melanoma Community scan results in

  • Post
    heg50heg
    Participant

    hello , as of this afternoon I found out my results from brain and body scan and was happy to hear they all came back clear. this was good and bad news as now my chemo dr. says I have 3 options – wait and see and be examined basically do nothing more – do a year of interferon , I understand that makes you pretty sick – or participate in a clinical trial, unfortanately there is none going on at this time for stage 3 patients. Stuck trying to decide what to do, should I or not do the interferon. Had 1 lymph node infected at time of surgery. will it spread yet .

    hello , as of this afternoon I found out my results from brain and body scan and was happy to hear they all came back clear. this was good and bad news as now my chemo dr. says I have 3 options – wait and see and be examined basically do nothing more – do a year of interferon , I understand that makes you pretty sick – or participate in a clinical trial, unfortanately there is none going on at this time for stage 3 patients. Stuck trying to decide what to do, should I or not do the interferon. Had 1 lymph node infected at time of surgery. will it spread yet . many many questions and really confused what to do. any thoughts or comments greatly appreciated here.

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  • Replies
      lhaley
      Participant

      Great to hear that all was clear!!!!

      I did not do interfuron so I don't feel I can speak to doing it or not.  Did want to say that even if you found a trial for stage 3, if NED there is usually a placebo arm to the trial. They can do that because the standard of care is to watch and wait.

      I am stage 4 and NED (well, there are 2 nodules but too small to biopsy), I am also doing watch and wait.  As it is said to me it's careful and thoughtful watching.  I fought it for a long time, telling the oncologists that I wanted to be doing something. After awhile I accepted their reasoning and instead have learned to be very aware of my body. I'm not saying to the point of being a hypochondriac but I do notice are react when I'm suspicious of something.  I 've now had 5 recurrances surgically resected.

      Time will make this easier if you choose to just watch.  For today just celebrate the clear scans. If you don't get many responses you might want to search on interfuron or post again with a topic heading asking advice on interfuron.

      Wishing you the best!

      Linda

      Stage IV since 06

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      lhaley
      Participant

      Great to hear that all was clear!!!!

      I did not do interfuron so I don't feel I can speak to doing it or not.  Did want to say that even if you found a trial for stage 3, if NED there is usually a placebo arm to the trial. They can do that because the standard of care is to watch and wait.

      I am stage 4 and NED (well, there are 2 nodules but too small to biopsy), I am also doing watch and wait.  As it is said to me it's careful and thoughtful watching.  I fought it for a long time, telling the oncologists that I wanted to be doing something. After awhile I accepted their reasoning and instead have learned to be very aware of my body. I'm not saying to the point of being a hypochondriac but I do notice are react when I'm suspicious of something.  I 've now had 5 recurrances surgically resected.

      Time will make this easier if you choose to just watch.  For today just celebrate the clear scans. If you don't get many responses you might want to search on interfuron or post again with a topic heading asking advice on interfuron.

      Wishing you the best!

      Linda

      Stage IV since 06

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      Janner
      Participant

      You might want to do your own clinical trial research at http://www.clinicaltrials.gov.  I believe there may be stage III trials going on, but maybe not at your current location.  You might need to do a little research yourself and not rely exclusively on your doctor's statements if clinical trials are of interest to you.  Travel might be necessary.  All 3 choices given you are valid as even Interferon hasn't shown an overall survival benefit, just a delayed recurrence benefit..   It's hard to jump in after being newly diagnosed and learn everything you can quickly, but if there is one thing many have learned here – you need to be your own advocate, do your own research and then do what is right for YOU.

      Best wishes,

      Janner

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      Janner
      Participant

      You might want to do your own clinical trial research at http://www.clinicaltrials.gov.  I believe there may be stage III trials going on, but maybe not at your current location.  You might need to do a little research yourself and not rely exclusively on your doctor's statements if clinical trials are of interest to you.  Travel might be necessary.  All 3 choices given you are valid as even Interferon hasn't shown an overall survival benefit, just a delayed recurrence benefit..   It's hard to jump in after being newly diagnosed and learn everything you can quickly, but if there is one thing many have learned here – you need to be your own advocate, do your own research and then do what is right for YOU.

      Best wishes,

      Janner

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      JakeinNY
      Participant

      Good advice above. I do know that there are trials or "studies"  that don't include placebo though. Ask questions, do your research, and ultimately do what's best for you. I hope that you are in good hands with an oncologist that, preferably, specializes in melanoma. Congratulations on the clear scans and best wishes for a long life.

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      JakeinNY
      Participant

      Good advice above. I do know that there are trials or "studies"  that don't include placebo though. Ask questions, do your research, and ultimately do what's best for you. I hope that you are in good hands with an oncologist that, preferably, specializes in melanoma. Congratulations on the clear scans and best wishes for a long life.

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      ockelly
      Participant

      Hi There… sorry you're having to make this difficult decision.  My husband, TJ, was dx with stage 3b in Nov, didn't qualify for any clinical trials and chose to do Interferon.  He finished his month of IV infusions on Friday and I just gave him his first injection.  Logistically the month was difficult…. having to be at the hospital every day for our 2 pm date.  However, he tolerated the side effects well.  Mostly, he is very fatigued.  He has worked throughout and he has a very demanding job.  He has also exercised every day.  Other side effects are… 3 times he got a fever and chills, he has an itchy rash on his back, he has required 2x/wk labs because his white blood count is low and platelets are borderline… no increase in liver function tests yet.  His labs did not get bad enough to hold  or change his dose.  His appetite has decreased but he is still eating plenty just not enjoying food as much as usual.  He feels overall that the month went much better than we thought it would.

      His biggest concern going into this was a fear of having a cloudy mind or depression.  Fortunately, he has not experienced either.  

      Everyone reacts differently to these medication and there is a huge range of side effects that a patient may or may not experience.   We were not thrilled with the thought of choosing Interferon knowing the data isn't convincing but we also wanted to do something.  

      Not sure if your node was micro or macro.  If macro there is an upcoming clinical trial for stage 3b/c.  It is supposed to start soon… not sure if you'll fit into the time frame… its ipi vs interferon so no placebo.  go to clinicaltrials.gov #NCT01274338.  Dr Tarhini will email back if you contact him.

      Otherwise, we went to Univ of Washington and consulted with Dr Wu at MD Anderson in December and at that time there weren't any other clinical trials (besides the Ipi placebo and the GSK DERMA didn't qualify for either) for stage 3.

      Good luck with your decision.  

      If you have any other questions I'll check back.

      Kelly

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      ockelly
      Participant

      Hi There… sorry you're having to make this difficult decision.  My husband, TJ, was dx with stage 3b in Nov, didn't qualify for any clinical trials and chose to do Interferon.  He finished his month of IV infusions on Friday and I just gave him his first injection.  Logistically the month was difficult…. having to be at the hospital every day for our 2 pm date.  However, he tolerated the side effects well.  Mostly, he is very fatigued.  He has worked throughout and he has a very demanding job.  He has also exercised every day.  Other side effects are… 3 times he got a fever and chills, he has an itchy rash on his back, he has required 2x/wk labs because his white blood count is low and platelets are borderline… no increase in liver function tests yet.  His labs did not get bad enough to hold  or change his dose.  His appetite has decreased but he is still eating plenty just not enjoying food as much as usual.  He feels overall that the month went much better than we thought it would.

      His biggest concern going into this was a fear of having a cloudy mind or depression.  Fortunately, he has not experienced either.  

      Everyone reacts differently to these medication and there is a huge range of side effects that a patient may or may not experience.   We were not thrilled with the thought of choosing Interferon knowing the data isn't convincing but we also wanted to do something.  

      Not sure if your node was micro or macro.  If macro there is an upcoming clinical trial for stage 3b/c.  It is supposed to start soon… not sure if you'll fit into the time frame… its ipi vs interferon so no placebo.  go to clinicaltrials.gov #NCT01274338.  Dr Tarhini will email back if you contact him.

      Otherwise, we went to Univ of Washington and consulted with Dr Wu at MD Anderson in December and at that time there weren't any other clinical trials (besides the Ipi placebo and the GSK DERMA didn't qualify for either) for stage 3.

      Good luck with your decision.  

      If you have any other questions I'll check back.

      Kelly

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      ockelly
      Participant

      I just reread your post and want to add more details about the Stage 3 clinical trials.  There are 2 currently….  Ipi vs placebo its a randomized double blind trial in which 50% of the patients get the drug.  (TJ didn't have a primary so didn't qualify)  The other is a vaccine trial by GSK called DERMA.  It is a vaccine combined with an immune booster but your tumor has to express the protein MAGE A3 to qualify (2/3 of patients have it.)  They will send a piece of your tumor to Belgium (seriously:)  It takes a few week to get results.  Then if you qualify you are randomized into the study (must happen within 9 weeks of your surgery) 2/3 of the patients get the drug.  The others get a placebo.  Those were the only choices in December but there could be more now.

      Good luck

      Kelly

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      ockelly
      Participant

      I just reread your post and want to add more details about the Stage 3 clinical trials.  There are 2 currently….  Ipi vs placebo its a randomized double blind trial in which 50% of the patients get the drug.  (TJ didn't have a primary so didn't qualify)  The other is a vaccine trial by GSK called DERMA.  It is a vaccine combined with an immune booster but your tumor has to express the protein MAGE A3 to qualify (2/3 of patients have it.)  They will send a piece of your tumor to Belgium (seriously:)  It takes a few week to get results.  Then if you qualify you are randomized into the study (must happen within 9 weeks of your surgery) 2/3 of the patients get the drug.  The others get a placebo.  Those were the only choices in December but there could be more now.

      Good luck

      Kelly

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      ockelly
      Participant

      I just reread your post and want to add more details about the Stage 3 clinical trials.  There are 2 currently….  Ipi vs placebo its a randomized double blind trial in which 50% of the patients get the drug.  (TJ didn't have a primary so didn't qualify)  The other is a vaccine trial by GSK called DERMA.  It is a vaccine combined with an immune booster but your tumor has to express the protein MAGE A3 to qualify (2/3 of patients have it.)  They will send a piece of your tumor to Belgium (seriously:)  It takes a few week to get results.  Then if you qualify you are randomized into the study (must happen within 9 weeks of your surgery) 2/3 of the patients get the drug.  The others get a placebo.  Those were the only choices in December but there could be more now.

      Good luck

      Kelly

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      ockelly
      Participant

      I just reread your post and want to add more details about the Stage 3 clinical trials.  There are 2 currently….  Ipi vs placebo its a randomized double blind trial in which 50% of the patients get the drug.  (TJ didn't have a primary so didn't qualify)  The other is a vaccine trial by GSK called DERMA.  It is a vaccine combined with an immune booster but your tumor has to express the protein MAGE A3 to qualify (2/3 of patients have it.)  They will send a piece of your tumor to Belgium (seriously:)  It takes a few week to get results.  Then if you qualify you are randomized into the study (must happen within 9 weeks of your surgery) 2/3 of the patients get the drug.  The others get a placebo.  Those were the only choices in December but there could be more now.

      Good luck

      Kelly

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      TAC
      Participant

      I am Stage IIIb and have been so for 9 years in spite of 6 recurrences all on left side of my face where the original lesion was. I had 2 SNBs with no evidence of melanoma in the nodes. I did elect to do interferon and was on it for 4 1/2 months before I had another recurrence so I stopped it. My side effects were awful but I just hung in there until the recurrence. I do know od some who had minimal to no side effects for the full year. Some doctors believe that the 1 month of IV interferon is all that is required and that the 11 months of self-injections are not necessary. Maybe others will chime in about this.

       

      The watching and waiting would not be my choice especially if nothing is done (no scans, etc.) unless you have symptoms. If you have symptoms, it usually means that it has spread to an organ or organs..not good. Given the choices….placebo possibility in a trial vs. 1 month of IV interferon, I'd choose interferon even though it probably entails side effects. In my opinion, doing something is better than doing nothing. Best wishes.

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        Laurie from maine
        Participant

        hi

        First off – congratulations on clear scans!!  That is great.

        I am stage 3C and have been NED for two years.  I did surgery, radiation and then high dose interferon and 4 months of low dose until my liver couldnt tolerate the interferon.  I was not offered clinical trials so not sure whether I would have gone that way.  It is scary and hard to feel you dont have options.  It was hard and interferon does beat you up, but I am glad I did it for even that little bit that I did.  It made me feel I was doing something positive for myself.  good luck, let us know what you decide.  This board is great for helping you with decisions and help you thru as you deal with side effects etc.

        laurie from maine

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        Vermont_Donna
        Participant

        Hi,

        Congrats on clear scans! So you are stage 3a, like me. I chose to do interferon. I had a PICC line put in, had my first interferon infusion in the hospital chemo unit (Outpatient)…got ill afterwards, dizzy and nauseous, cold (you need to invest in an electric blanket), and tired……I slept the rest of the day and night but the next day felt fine. I was signed up for a Visiting Nurse to come do the infusions at home but on the second dose I got an infection at my PICC line site (cellulitis) and ended up in the hospital for 5 days (also got a blood clot in my arm…dont get scared off, I just had a round of bad luck!). So my oncologist had the PICC line pulled, gave me three weeks off and I started self injections three times a week. As I said before, I chose not to work. I qualified for SSDI and I wanted to be able to eat well, sleep alot and have a lesser stress free lifestyle, to be at my best for the cancer treatment and for my teenage daughter still in high school. Sure I could have worked but I would have been overtired and stressed to the max…(I am a social worker/therapist and had a high paced stressful job in a medical practice). My life as such was quite manageable……I took a nap in the afternoon (three or four hours usually!) and slept all night (12 hours). I used an electric blanket to keep warm when I felt chilled. You will soon learn how to do the self injections…..really not a problem and they are sub q injections so not a big long needle.

        You can always try the interferon and STOP if you feel you have to, but you cant decide later on, in a few months, to do it. It must be started within a certain number of days since resection (surgery…SNB/LND).

        There is lots of discussion of whether the benefit is to be obtained from one month of high dose versus one month of high dose and 11 months of injections. Many people and some oncologists have chosen to do the one month of high dose based on the results on one study. Other people and other oncologists (mine included) believe that high dose followed by 11 months of low dose injections is the standard of care. I did 11 months of injections after two doses of high dose. I did have a re-occurence (one lesion, a metastasis from my original tumor), a few inches away from the first tumor, after one year, had that removed, confirmed to be melanoma, had a wider excision, and I think radiation followed by 7  months of leukine before I had re-occurence again. Some of us have re-occurences and others remain NED. You cant predict what your body will do based on other people's responses, so talk with your doctor and team and do what is best for YOU.

        What are you mostly concerned with? What about doing the Interferon scares you? If it is quality of life, then yes that may change but all of us make the best of it. If "watching and waiting" is not your thing, and you cant find a clinical trial, then try interferon, as I said you can always stop.

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi,

        Congrats on clear scans! So you are stage 3a, like me. I chose to do interferon. I had a PICC line put in, had my first interferon infusion in the hospital chemo unit (Outpatient)…got ill afterwards, dizzy and nauseous, cold (you need to invest in an electric blanket), and tired……I slept the rest of the day and night but the next day felt fine. I was signed up for a Visiting Nurse to come do the infusions at home but on the second dose I got an infection at my PICC line site (cellulitis) and ended up in the hospital for 5 days (also got a blood clot in my arm…dont get scared off, I just had a round of bad luck!). So my oncologist had the PICC line pulled, gave me three weeks off and I started self injections three times a week. As I said before, I chose not to work. I qualified for SSDI and I wanted to be able to eat well, sleep alot and have a lesser stress free lifestyle, to be at my best for the cancer treatment and for my teenage daughter still in high school. Sure I could have worked but I would have been overtired and stressed to the max…(I am a social worker/therapist and had a high paced stressful job in a medical practice). My life as such was quite manageable……I took a nap in the afternoon (three or four hours usually!) and slept all night (12 hours). I used an electric blanket to keep warm when I felt chilled. You will soon learn how to do the self injections…..really not a problem and they are sub q injections so not a big long needle.

        You can always try the interferon and STOP if you feel you have to, but you cant decide later on, in a few months, to do it. It must be started within a certain number of days since resection (surgery…SNB/LND).

        There is lots of discussion of whether the benefit is to be obtained from one month of high dose versus one month of high dose and 11 months of injections. Many people and some oncologists have chosen to do the one month of high dose based on the results on one study. Other people and other oncologists (mine included) believe that high dose followed by 11 months of low dose injections is the standard of care. I did 11 months of injections after two doses of high dose. I did have a re-occurence (one lesion, a metastasis from my original tumor), a few inches away from the first tumor, after one year, had that removed, confirmed to be melanoma, had a wider excision, and I think radiation followed by 7  months of leukine before I had re-occurence again. Some of us have re-occurences and others remain NED. You cant predict what your body will do based on other people's responses, so talk with your doctor and team and do what is best for YOU.

        What are you mostly concerned with? What about doing the Interferon scares you? If it is quality of life, then yes that may change but all of us make the best of it. If "watching and waiting" is not your thing, and you cant find a clinical trial, then try interferon, as I said you can always stop.

        Vermont_Donna, stage 3a

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        heg50heg
        Participant

        Vermont_Donna, Thanks for your reply. It really helped clear some worries up for me. I like your one point that IO could always try it and stop, and its probably worth doing . It also makes sence to not wait as your right , you have to get started within 6 weeks of surgery. Right now I am looking at starting treatments on march 3rd or the 10th. Thanks to you and many of the other responders for replying as it really does help one to get more info on this and other subjets.(PS – what does placebo mean). My big concern is that I had a back fusion 3 years ago and still hurt from that daily and am not sure about compounding that pain with something else. Finally able to work full time light duty and now this. Is it worth trying for dissability before I start or see how bad it is and go from there.

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        heg50heg
        Participant

        Vermont_Donna, Thanks for your reply. It really helped clear some worries up for me. I like your one point that IO could always try it and stop, and its probably worth doing . It also makes sence to not wait as your right , you have to get started within 6 weeks of surgery. Right now I am looking at starting treatments on march 3rd or the 10th. Thanks to you and many of the other responders for replying as it really does help one to get more info on this and other subjets.(PS – what does placebo mean). My big concern is that I had a back fusion 3 years ago and still hurt from that daily and am not sure about compounding that pain with something else. Finally able to work full time light duty and now this. Is it worth trying for dissability before I start or see how bad it is and go from there.

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        Laurie from maine
        Participant

        hi

        First off – congratulations on clear scans!!  That is great.

        I am stage 3C and have been NED for two years.  I did surgery, radiation and then high dose interferon and 4 months of low dose until my liver couldnt tolerate the interferon.  I was not offered clinical trials so not sure whether I would have gone that way.  It is scary and hard to feel you dont have options.  It was hard and interferon does beat you up, but I am glad I did it for even that little bit that I did.  It made me feel I was doing something positive for myself.  good luck, let us know what you decide.  This board is great for helping you with decisions and help you thru as you deal with side effects etc.

        laurie from maine

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      TAC
      Participant

      I am Stage IIIb and have been so for 9 years in spite of 6 recurrences all on left side of my face where the original lesion was. I had 2 SNBs with no evidence of melanoma in the nodes. I did elect to do interferon and was on it for 4 1/2 months before I had another recurrence so I stopped it. My side effects were awful but I just hung in there until the recurrence. I do know od some who had minimal to no side effects for the full year. Some doctors believe that the 1 month of IV interferon is all that is required and that the 11 months of self-injections are not necessary. Maybe others will chime in about this.

       

      The watching and waiting would not be my choice especially if nothing is done (no scans, etc.) unless you have symptoms. If you have symptoms, it usually means that it has spread to an organ or organs..not good. Given the choices….placebo possibility in a trial vs. 1 month of IV interferon, I'd choose interferon even though it probably entails side effects. In my opinion, doing something is better than doing nothing. Best wishes.

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      ockelly
      Participant

      Heg

      Placebo is a no drug treatment… saline instead of medication, or sugar pill instead of a drug.  The drug companies need a control group to know if their product really is working.  So the placebo patients unknowingly don't receive the drug and are the control.

      My husband was offered a PICC line but we chose to try regular IVs first.  He has big veins and doesn't mind having a stick.  He ended up having an IV started each Monday and Thursday same stick as his lab draw… so he's have a small catheter in his arm Mon, Tues and Thursday night.  They would take it out after his infusions on Wed and Fri.  He really liked not having it over the weekend and much less risk of infection.  But if you are an difficult IV stick then PICC is the way to go.

      Kelly

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      ockelly
      Participant

      Heg

      Placebo is a no drug treatment… saline instead of medication, or sugar pill instead of a drug.  The drug companies need a control group to know if their product really is working.  So the placebo patients unknowingly don't receive the drug and are the control.

      My husband was offered a PICC line but we chose to try regular IVs first.  He has big veins and doesn't mind having a stick.  He ended up having an IV started each Monday and Thursday same stick as his lab draw… so he's have a small catheter in his arm Mon, Tues and Thursday night.  They would take it out after his infusions on Wed and Fri.  He really liked not having it over the weekend and much less risk of infection.  But if you are an difficult IV stick then PICC is the way to go.

      Kelly

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        heg50heg
        Participant

        Kelly, Thanks for your info and I appeciate it greatly. The IV picc line sounds a bit scary.  How far is your husband along with his treatments. Is he taking shots yet and do they or the intervenios make his muscles or joints hurt or tense up; Just trying to get a good grip on this.

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        heg50heg
        Participant

        Kelly, Thanks for your info and I appeciate it greatly. The IV picc line sounds a bit scary.  How far is your husband along with his treatments. Is he taking shots yet and do they or the intervenios make his muscles or joints hurt or tense up; Just trying to get a good grip on this.

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        heg50heg
        Participant

        Kelly, Thanks for your info and I appeciate it greatly. The IV picc line sounds a bit scary.  How far is your husband along with his treatments. Is he taking shots yet and do they or the intervenios make his muscles or joints hurt or tense up; Just trying to get a good grip on this.

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        ockelly
        Participant

        HI Heg

        My husband got his first shot last night… see my post above.  I describe his side effects in it.  No specific muscle aches just an overall feeling of exhaustion.  Although, as I stated he is still working a demanding job and exercising (running and lifting weights) every day.

        The PICC line is not so much scary as a nuisance.  It typically is on the inside of your upper arm it requires flushing, a fairly large dressing, and great care in keep it clean and dry.  It is wonderful for someone with difficult veins or anxiety about needle sticks.  Also labs can be drawn from it.  I say, if you have good veins try regular IVs for the first week.  If it goes OK stay with that if not schedule a PICC insertion.  

        BTW, I would make an appt at Cleveland Clinic asap if I were you.  It is a great melanoma center within driving distance.  I believe it would be well worth the trip.

        Kelly

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        Vermont_Donna
        Participant

        Hi,

        Have a PICC line placed is a bit different than having an IV put in, as you are taken to a room where sterile precautions are used. You will get some medicine that will calm you down but you will be awake for the procedure. I got to choose what kind of music I wanted to listen to, and the two techs who did the procedure were hilarious, really they were so entertaining. It did not hurt to get in placed, nor did it hurt afterwards (my first one). I dont remember having to take any kind of special care of it afterwards, the nurses would flush it when they went to do an infusion. My arm developed a blood clot and got infected after two days, its called a "mechanical phlebitis", and is a possible side effect that they will inform you about. You will receive written information about your PICC line. I had a second line placed at another point for other treatments and this one did not get infected or develop a blood clot. At one point I was at home on IV Vancomycin and I did the infusions myself. A visiting nurse came and trained me and my mom in how to do it. So you will be amazed at what you can learn to do if you need to! Nothing about the PICC line hurt except when mine got the infection/blood clot so dont worry about that. Maybe others who had different experiences will chime in.

        Good luck in your decision making. You sound a bit calmer in your posts.

        Vermont_Donna

        stage 3a

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        heg50heg
        Participant

        Yea, I guess the initial schock is over and I am a little more at ease and sort of know what I am doing now in regards to looking up info and treatment options and all. This site has also helped calm me down a bit , as before I discoverd it I felt like I was all alone in this new battle. Nice to be able to talk to others in my condition.

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        heg50heg
        Participant

        Yea, I guess the initial schock is over and I am a little more at ease and sort of know what I am doing now in regards to looking up info and treatment options and all. This site has also helped calm me down a bit , as before I discoverd it I felt like I was all alone in this new battle. Nice to be able to talk to others in my condition.

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        Vermont_Donna
        Participant

        Hi,

        Have a PICC line placed is a bit different than having an IV put in, as you are taken to a room where sterile precautions are used. You will get some medicine that will calm you down but you will be awake for the procedure. I got to choose what kind of music I wanted to listen to, and the two techs who did the procedure were hilarious, really they were so entertaining. It did not hurt to get in placed, nor did it hurt afterwards (my first one). I dont remember having to take any kind of special care of it afterwards, the nurses would flush it when they went to do an infusion. My arm developed a blood clot and got infected after two days, its called a "mechanical phlebitis", and is a possible side effect that they will inform you about. You will receive written information about your PICC line. I had a second line placed at another point for other treatments and this one did not get infected or develop a blood clot. At one point I was at home on IV Vancomycin and I did the infusions myself. A visiting nurse came and trained me and my mom in how to do it. So you will be amazed at what you can learn to do if you need to! Nothing about the PICC line hurt except when mine got the infection/blood clot so dont worry about that. Maybe others who had different experiences will chime in.

        Good luck in your decision making. You sound a bit calmer in your posts.

        Vermont_Donna

        stage 3a

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        heg50heg
        Participant

        Kelly , will be going to James cancer Center at OHIO STATE next thursday. If you or anyone else have heard good things from here let me know   THANKS

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        heg50heg
        Participant

        Kelly , will be going to James cancer Center at OHIO STATE next thursday. If you or anyone else have heard good things from here let me know   THANKS

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        ockelly
        Participant

        HI Heg

        My husband got his first shot last night… see my post above.  I describe his side effects in it.  No specific muscle aches just an overall feeling of exhaustion.  Although, as I stated he is still working a demanding job and exercising (running and lifting weights) every day.

        The PICC line is not so much scary as a nuisance.  It typically is on the inside of your upper arm it requires flushing, a fairly large dressing, and great care in keep it clean and dry.  It is wonderful for someone with difficult veins or anxiety about needle sticks.  Also labs can be drawn from it.  I say, if you have good veins try regular IVs for the first week.  If it goes OK stay with that if not schedule a PICC insertion.  

        BTW, I would make an appt at Cleveland Clinic asap if I were you.  It is a great melanoma center within driving distance.  I believe it would be well worth the trip.

        Kelly

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        heg50heg
        Participant

        Kelly, Thanks for your info and I appeciate it greatly. The IV picc line sounds a bit scary.  How far is your husband along with his treatments. Is he taking shots yet and do they or the intervenios make his muscles or joints hurt or tense up; Just trying to get a good grip on this.

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