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Stage 3A new to board

Forums General Melanoma Community Stage 3A new to board

  • Post
    CaptAaron
    Participant

    Good evening fellow warriors.  Just wanted to introduce myself to the board and see if anyone can shed some light on a treatment option I'm facing.  I'm a 31 year old father of 2 boys.  I'm active duty Air Force stationed at NASA's Johnson Space Center in Houston, TX and I'm a marathon runner.  I was diagnosed in July of this year (2010) with a 1.15mm spot on my upper left back.  A WLE and SNB later revealed clear margins and one of three lymph nodes removed showing a microscopic level of melanoma present (<10cells in a 1cm diameter sampl

    Good evening fellow warriors.  Just wanted to introduce myself to the board and see if anyone can shed some light on a treatment option I'm facing.  I'm a 31 year old father of 2 boys.  I'm active duty Air Force stationed at NASA's Johnson Space Center in Houston, TX and I'm a marathon runner.  I was diagnosed in July of this year (2010) with a 1.15mm spot on my upper left back.  A WLE and SNB later revealed clear margins and one of three lymph nodes removed showing a microscopic level of melanoma present (<10cells in a 1cm diameter sample according to the pathology report).  I then went on to get additional surgery at MD Anderson.  The surgeon removed 22 additional lymph nodes on my left side and all were clear.  CT/PET/MRI's all clear of any metastatic disease.  Since my diagnosis I've made incredible lifestyle changes to include going vegetarian except for fish occasionally, cut out all carbonated beverages, caffeine, alcohol, diary and most anything that isn't organic.

     

    My medical oncologist recommended two potential paths for treatment.  One was a pegylated (sp) Interferon trail which was dependent on whether I had a specific genetic tissue type.  Blood tests revealed that I did not, and therefore the other treatment recommended was the standard Interferon regimin of 4 weeks HD and 11 months self injections.  I completed the 4 weeks of IV treatment not last Friday, but the Friday before.  I mus say that it was quite miserable most of the time and the depression effects hit me hard.  I've been trying to work as much as possible, but I'm also getting the "chemo brain" effects and dealing with that at NASA is not the best thing to have happen either.  Headaches, depression, fatigue, bad tasting food are all very real side effects for me, and I'm not liking the idea of continuing this for 11 months.  My oncologist is definitely leaving the option up to me, and doing a good job of explaining the minimal benefits of Interferon to me, stressing that it is a patient choice.

     

    So my question is kind of an obvious one…what do you all think would best in this situation?  I'm all for fighting cancer and fighting hard, but the costs have to at least equal the benefits, and it doesn't seem like there's strong evidence out there to help that case.  As I sit here and type this even my head is throbbing and I feel like melting into my chair from exhaustion.  I like the idea of counting on the 4 weeks of IV treatment to be "good enough" and the 11 months of additional treatment to be the "enemy of good enough"…but is that the case?  I know it's a dilema that's been debated on this forum before, but I thought I'd re-introduce it, along with myself.  Thank you for your inputs and your time fellow warriors.–Aaron

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  • Replies
      Jim in Denver
      Participant

      Hi Aaron,

      I am not sure what the benefit of Interferon would be when your scans are clear.  Perhaps other Stage IIIers have insights.  MDA does not have every single treatment available, even though they are an outstanding insitution with many fine doctors.  I am Stage IV and enrollled in a trial at MDA right now, in fact.  Watch and wait is an option that some in your situation find preferable to the Interferon side effects.  I am sure that would not be an easy decision to make, but it sounds like the side effects are making it very difficult to function, and the benefits seem to you to be unclear.

      There are not as many clinical trials available for Stage IIIers as Stage IVs, especially with no measurable disease – kind of a good news, bad news thing I guess you could say.  One trial that is available to you is this one:

      http://clinicaltrials.gov/ct2/show/study/NCT00636168?term=Ipilimumab+and+melanoma&recr=Open&rank=3&show_locs=Y#locn

      It is not at MDA, but up in Dallas.  It is a randomized trial, so you have only a 50% chance of getting Ipilimumab (which is a very promising treatment with few side effects) but that is higher than the 0% chance you have when you are Stage III NED.  Just a thought.  Best wishes to you in gathering informationa and making decisions.

      Best,

      Jim

       

       

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      Jim in Denver
      Participant

      Hi Aaron,

      I am not sure what the benefit of Interferon would be when your scans are clear.  Perhaps other Stage IIIers have insights.  MDA does not have every single treatment available, even though they are an outstanding insitution with many fine doctors.  I am Stage IV and enrollled in a trial at MDA right now, in fact.  Watch and wait is an option that some in your situation find preferable to the Interferon side effects.  I am sure that would not be an easy decision to make, but it sounds like the side effects are making it very difficult to function, and the benefits seem to you to be unclear.

      There are not as many clinical trials available for Stage IIIers as Stage IVs, especially with no measurable disease – kind of a good news, bad news thing I guess you could say.  One trial that is available to you is this one:

      http://clinicaltrials.gov/ct2/show/study/NCT00636168?term=Ipilimumab+and+melanoma&recr=Open&rank=3&show_locs=Y#locn

      It is not at MDA, but up in Dallas.  It is a randomized trial, so you have only a 50% chance of getting Ipilimumab (which is a very promising treatment with few side effects) but that is higher than the 0% chance you have when you are Stage III NED.  Just a thought.  Best wishes to you in gathering informationa and making decisions.

      Best,

      Jim

       

       

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        ChristineL
        Participant

        At Stage IIIb, I too looked at this ipi trial, but was told my my oncologist that one of the criteria was 1 mm of cancer cells in the lymph node.  This isn't mentioned online, but is an important factor that I wish was publicised in the trial info.  Just a point of clarification, that's all.

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        ChristineL
        Participant

        At Stage IIIb, I too looked at this ipi trial, but was told my my oncologist that one of the criteria was 1 mm of cancer cells in the lymph node.  This isn't mentioned online, but is an important factor that I wish was publicised in the trial info.  Just a point of clarification, that's all.

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        Jim in Denver
        Participant

        Thanks for pointing that out.  There certainly are problems with incomplete and/or inaccurate information on the cliinicaltrials.gov website.  That is why it is only a starting point, an many of us who have had dealings with the clinical trial "system" can say that it is flawed in various ways.  I was trying to offer our new friend some guidance to use the website, and this is the only trial currently available involving Ipi available for Stage III, to my knowledge.

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        Jim in Denver
        Participant

        Thanks for pointing that out.  There certainly are problems with incomplete and/or inaccurate information on the cliinicaltrials.gov website.  That is why it is only a starting point, an many of us who have had dealings with the clinical trial "system" can say that it is flawed in various ways.  I was trying to offer our new friend some guidance to use the website, and this is the only trial currently available involving Ipi available for Stage III, to my knowledge.

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      EmilyandMike
      Participant

      Hello Captain and welcome aboard! 

      I am sorry you arent feeling well.  Your stats are similar to my husbands except Mike is 10 years older.  I wish I had an answer for you..but even your docs dont know if interferon (regardless of 1 mos or 11mos) is the best option for you.  His docs (UCSF) gave him the choice to do interferon or observation. We decided on osbservation after reading the research reports and reading the boards here/other places….some folks do really well on it and some dont, some recur right away and some dont.  

      We wanted to do the Ipi adjuvant trial but stage 3a wasnt allowed last year and you had to do the trial within 8 weeks of lymph node surgery.  You probably wouldnt qualify for that at this point.  There just isnt anything else for stage 2/3a except interferon and observation. 

      It is interesting that they gave you a choice of interferons based on tissue type.  I know that right now they are studying markers that might indicate why interferon works well on some people.  Hopefully these markers will be available to us soon.   But for a now we are forced to make these agonizing decisions.   All I know is that Mike is enjoying life, not depressed, and not sick – NED after 15 mos of not doing interferon.   We just hope that there are better treatment options if and when there is a recurence.

      All my best to you!

      Emily

      http://www.emandmichael.com    

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      EmilyandMike
      Participant

      Hello Captain and welcome aboard! 

      I am sorry you arent feeling well.  Your stats are similar to my husbands except Mike is 10 years older.  I wish I had an answer for you..but even your docs dont know if interferon (regardless of 1 mos or 11mos) is the best option for you.  His docs (UCSF) gave him the choice to do interferon or observation. We decided on osbservation after reading the research reports and reading the boards here/other places….some folks do really well on it and some dont, some recur right away and some dont.  

      We wanted to do the Ipi adjuvant trial but stage 3a wasnt allowed last year and you had to do the trial within 8 weeks of lymph node surgery.  You probably wouldnt qualify for that at this point.  There just isnt anything else for stage 2/3a except interferon and observation. 

      It is interesting that they gave you a choice of interferons based on tissue type.  I know that right now they are studying markers that might indicate why interferon works well on some people.  Hopefully these markers will be available to us soon.   But for a now we are forced to make these agonizing decisions.   All I know is that Mike is enjoying life, not depressed, and not sick – NED after 15 mos of not doing interferon.   We just hope that there are better treatment options if and when there is a recurence.

      All my best to you!

      Emily

      http://www.emandmichael.com    

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      lhaley
      Participant

      Aaron,

      Welcome to the board – I'm sorry that you have to be here.  Right now many "regulars" aren't able to find the board due to the change in the url, that's supposed to be fixed and hopefully you will get more info.

      Presently I am at stage IV and NED. While that's a great thing, it brings your options down to basically nothing. For me it's watch and wait. I did do a year of GMCSF (leukine) in 06. That has now through trial been proven to show no statistical evidence that it helped – however many on the board had very good luck with it.  Myself, I wonder. I've had 3 recurrances since the year of leukine but all were contained individual tumors.  Others on the board have the same stories. Who knows what would have happened if I hadn't taken it.  Side effects were very doable. Itching and bone pain (bothersome but not severe).  I do know that MDA does not recognize Leukine as a choice and if you found a Dr. to prescribe off label you would need to make sure that your insurance covered it.

      Have they put you on an antidepressant while on interfuron?  I looked at your profile and Dr. Hwu is a highly respected melanoma specialist.  My surgeon took my case to the tumor board to discuss interfuron at stage IV NED. It was decided not to offer it to me (wasn't told why yet) but when I knew they were going to bring it up the surgeon told me that the study that said 1 month of hd was just as effective as 1 month of hd and 11 follow up months of low dose was not done under proper guidelines and was defective. He said to do the full year.  When I was offered the interfuron in 06 I turned it down. I just didn't want to give up a year if it didn't do any good. This time I had decided I would do it and if after a few months I couldn't function I would get off. 

      A few months ago there was a discussion on the board if people who had done interfuron thought it had helped them. For the most part everyone thought it did, even if it had only delayed the recurrance. If I can find the thread I'll repost it.

      You have difficult decisions to make. If on an antidepressant ask for it to be tweaked to help you out. You are at the top hospital for melanoma and with one of the top Doctors at that institution.  NED is a great place to be, it just limits your options.  I still pick surgery when possible and then watch.

      Linda

      Stage IV  since 06 NED 1 month

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      lhaley
      Participant

      Aaron,

      Welcome to the board – I'm sorry that you have to be here.  Right now many "regulars" aren't able to find the board due to the change in the url, that's supposed to be fixed and hopefully you will get more info.

      Presently I am at stage IV and NED. While that's a great thing, it brings your options down to basically nothing. For me it's watch and wait. I did do a year of GMCSF (leukine) in 06. That has now through trial been proven to show no statistical evidence that it helped – however many on the board had very good luck with it.  Myself, I wonder. I've had 3 recurrances since the year of leukine but all were contained individual tumors.  Others on the board have the same stories. Who knows what would have happened if I hadn't taken it.  Side effects were very doable. Itching and bone pain (bothersome but not severe).  I do know that MDA does not recognize Leukine as a choice and if you found a Dr. to prescribe off label you would need to make sure that your insurance covered it.

      Have they put you on an antidepressant while on interfuron?  I looked at your profile and Dr. Hwu is a highly respected melanoma specialist.  My surgeon took my case to the tumor board to discuss interfuron at stage IV NED. It was decided not to offer it to me (wasn't told why yet) but when I knew they were going to bring it up the surgeon told me that the study that said 1 month of hd was just as effective as 1 month of hd and 11 follow up months of low dose was not done under proper guidelines and was defective. He said to do the full year.  When I was offered the interfuron in 06 I turned it down. I just didn't want to give up a year if it didn't do any good. This time I had decided I would do it and if after a few months I couldn't function I would get off. 

      A few months ago there was a discussion on the board if people who had done interfuron thought it had helped them. For the most part everyone thought it did, even if it had only delayed the recurrance. If I can find the thread I'll repost it.

      You have difficult decisions to make. If on an antidepressant ask for it to be tweaked to help you out. You are at the top hospital for melanoma and with one of the top Doctors at that institution.  NED is a great place to be, it just limits your options.  I still pick surgery when possible and then watch.

      Linda

      Stage IV  since 06 NED 1 month

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      Laurie from maine
      Participant

      HI,

      I am stage 3C diagnosed feb 08.   I went to two melanoma specialists in Boston to discuss the options.  Their thoughts were probably similar to what you were hearing.   They both seemed to be saying this is your choice, know what the side effects are and what your year could be like and go for it if you feel you are ok with that.  One specialists told me he felt it was a "quality of life" issue and if I start interferon and find it is just beating me up too badly to not feel bad about stopping.  They all seemed to feel doing the high dose was worthwhile but wouldnt say about low dose. I am in my 50s kids are older so my husband and I  chose to do something and this was what was offered  so went for it.   So for me I did radiation, then high dose and then 6 months low dose (my liver couldnt tolerate it so it made the choice to stop for me).  But I did have option to go back on at a lower dose but at that point I chose to walk away from it.  My side effects were food tasted like it had gone bad so lost 20 pounds,  fatigue, hair loss, and hardest one for me was it effected my breathing, stairs, inclines etc were very hard for me.       Good news is that I am currently NED and all side effects are gone which is wonderful!

      good luck you are young and healthy and that is a big plus.  Keep us posted.   Thank you for your service. 

      laurie from maine

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      Laurie from maine
      Participant

      HI,

      I am stage 3C diagnosed feb 08.   I went to two melanoma specialists in Boston to discuss the options.  Their thoughts were probably similar to what you were hearing.   They both seemed to be saying this is your choice, know what the side effects are and what your year could be like and go for it if you feel you are ok with that.  One specialists told me he felt it was a "quality of life" issue and if I start interferon and find it is just beating me up too badly to not feel bad about stopping.  They all seemed to feel doing the high dose was worthwhile but wouldnt say about low dose. I am in my 50s kids are older so my husband and I  chose to do something and this was what was offered  so went for it.   So for me I did radiation, then high dose and then 6 months low dose (my liver couldnt tolerate it so it made the choice to stop for me).  But I did have option to go back on at a lower dose but at that point I chose to walk away from it.  My side effects were food tasted like it had gone bad so lost 20 pounds,  fatigue, hair loss, and hardest one for me was it effected my breathing, stairs, inclines etc were very hard for me.       Good news is that I am currently NED and all side effects are gone which is wonderful!

      good luck you are young and healthy and that is a big plus.  Keep us posted.   Thank you for your service. 

      laurie from maine

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      PhyllisP
      Participant

      Hi Aaron,

      I am also 3A diagnosed Dec. 09.  I live in Houston as well and see Dr. Patrick Hwu at MDA.  I was offered the pegylated interferon trial too, but chose not to do it because I got a blood clot after my lymphadectomy and had to do 3  months of Fragmin injections.  Currently I am NED and go in for scans and derm. checks every 3 months.  I wasn't offered the HD interferon but after researching mel treatments and statistics I didn't consider it.  It really is a personal choice. 

      I also try to eat healthy but still enjoy coffee and red wine.  I added Tumeric to my supplements because I read it can be beneficial in fighting melanoma.  My next scans are the week after Thanksgiving…so I am praying for NED.  Whatever trreatment (or none) you decide on I wish you  the best.

      Phyllis 

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      PhyllisP
      Participant

      Hi Aaron,

      I am also 3A diagnosed Dec. 09.  I live in Houston as well and see Dr. Patrick Hwu at MDA.  I was offered the pegylated interferon trial too, but chose not to do it because I got a blood clot after my lymphadectomy and had to do 3  months of Fragmin injections.  Currently I am NED and go in for scans and derm. checks every 3 months.  I wasn't offered the HD interferon but after researching mel treatments and statistics I didn't consider it.  It really is a personal choice. 

      I also try to eat healthy but still enjoy coffee and red wine.  I added Tumeric to my supplements because I read it can be beneficial in fighting melanoma.  My next scans are the week after Thanksgiving…so I am praying for NED.  Whatever trreatment (or none) you decide on I wish you  the best.

      Phyllis 

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      dian in spokane
      Participant

      Hi Aaron,

      I did interferon back in 2003 (I was stage 3B then) At that time, most doctors were recommending the whole year, but I've noticed over the last several years that more and more, I see patients come here who say their docs have given them the option of stopping after 'boot camp' (that first 4 weeks. ..though for YOU..boot camp probably means something entirely different<G>)

      For me, the first 4 weeks were not as bad as the long, wretched months that followed. If I had to make the choice now, knowing what I know, I would have quit after the first 4 weeks. That's easy to SAY though..back then, I think I would have done anything I thought might help. But there is more evidence now then there was then, that doing the first month only is just as effective as doing the whole year.

      I could not have worked during my time on interferon, and my job was not nearly as demanding or important as yours. BUT..we know others here who worked during the entire year. StanN (you can check his profile) was a firefighter during interferon and worked the entire year! Me.. I couldn't even drive for fear I would hit some pedestrian. My reaction time was terrible, and I walked around in a fog the entire time.

      And another thing to consider is that many people in your position decide to do 'observation only', so you've already gone a step farther than that.

      Of course this is a very personal decision, all you can do is weigh it all and decide on your own. You DO have a great doctor, something that you wouldn't have if you were say..in north dakota.

      In my opinion, the most important thing for you now is to be VIGILANT in your follow ups. That means scans at this point, rather than skin checks. The docs will want you seeing a derm of course, but your much more serious danger is progression to organs, so you need to keep on top of getting those checks. MDA is, as others have mentioned, one of the best Melanoma centers in the country and should you end up progressing, those folks will be the the best at giving you the most current options.

      I also think you should ask your doc about that IPI trial. You are probably not eligible for it at this point, but if you are, that might be a worthwhile option.

      Good Luck to you, welcome to the board, and..hey..thank you for your service to our country!

       

      dian in spokane

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      dian in spokane
      Participant

      Hi Aaron,

      I did interferon back in 2003 (I was stage 3B then) At that time, most doctors were recommending the whole year, but I've noticed over the last several years that more and more, I see patients come here who say their docs have given them the option of stopping after 'boot camp' (that first 4 weeks. ..though for YOU..boot camp probably means something entirely different<G>)

      For me, the first 4 weeks were not as bad as the long, wretched months that followed. If I had to make the choice now, knowing what I know, I would have quit after the first 4 weeks. That's easy to SAY though..back then, I think I would have done anything I thought might help. But there is more evidence now then there was then, that doing the first month only is just as effective as doing the whole year.

      I could not have worked during my time on interferon, and my job was not nearly as demanding or important as yours. BUT..we know others here who worked during the entire year. StanN (you can check his profile) was a firefighter during interferon and worked the entire year! Me.. I couldn't even drive for fear I would hit some pedestrian. My reaction time was terrible, and I walked around in a fog the entire time.

      And another thing to consider is that many people in your position decide to do 'observation only', so you've already gone a step farther than that.

      Of course this is a very personal decision, all you can do is weigh it all and decide on your own. You DO have a great doctor, something that you wouldn't have if you were say..in north dakota.

      In my opinion, the most important thing for you now is to be VIGILANT in your follow ups. That means scans at this point, rather than skin checks. The docs will want you seeing a derm of course, but your much more serious danger is progression to organs, so you need to keep on top of getting those checks. MDA is, as others have mentioned, one of the best Melanoma centers in the country and should you end up progressing, those folks will be the the best at giving you the most current options.

      I also think you should ask your doc about that IPI trial. You are probably not eligible for it at this point, but if you are, that might be a worthwhile option.

      Good Luck to you, welcome to the board, and..hey..thank you for your service to our country!

       

      dian in spokane

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        Jim in Denver
        Participant

        Dian – Stop with the North Dakota jokes:)

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        dian in spokane
        Participant

        hey! did you get that CD I mailed you!

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        dian in spokane
        Participant

        hey! did you get that CD I mailed you!

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        Jim in Denver
        Participant

        Yes I did, Dian.  Thank you VERY much!  I am bad about writing thank you notes, so I offer my belated thanks here and now.  I mentioned that I had receive the CD a few weeks ago when you posted asking about me :)  I was very surprised and pleased that you would follow up on our chat, and so quickly!

        You are a very talented musician, and the CD is a great collection of toe-tapping tunes.  I have always admired fiddlers, being a former guitar player myself.  It sounds like you may be taking a break from playing with your treatment and all, but I know that music is very important to you, so I hope you will be playing again before very long!

        I should reciprocate with some CDs burned from some of the locals I mentioned – Younder Mountain String Band and String Cheeze Incident are both good bands from Colorado.

        Thank You,

        Jim

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        dian in spokane
        Participant

        Jim, I am still playing..Playing tomorrow night at our local folk festival in fact. But yeah, it's been a tough year to make musical committments.

        I've actually MET the guys from Yonder Mountain. Before I was in this band, I had a band that won the band contest at their Festival (YMSB Hosts the Northwest String Summit) Then we opened the show the next year. They were amazing musicians, but those guys, (and the string cheese) are a little too out there for me. Thanks for the offer, I have a ton of their music. Don't worry about reciprocation.

        We've slipped into off topic territory..sorry, didn't mean to hijack the thread.

        I'm so glad you are doing well. Hope to see you in chat one of these evenings.

        dian

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        dian in spokane
        Participant

        Jim, I am still playing..Playing tomorrow night at our local folk festival in fact. But yeah, it's been a tough year to make musical committments.

        I've actually MET the guys from Yonder Mountain. Before I was in this band, I had a band that won the band contest at their Festival (YMSB Hosts the Northwest String Summit) Then we opened the show the next year. They were amazing musicians, but those guys, (and the string cheese) are a little too out there for me. Thanks for the offer, I have a ton of their music. Don't worry about reciprocation.

        We've slipped into off topic territory..sorry, didn't mean to hijack the thread.

        I'm so glad you are doing well. Hope to see you in chat one of these evenings.

        dian

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        Jim in Denver
        Participant

        Yes I did, Dian.  Thank you VERY much!  I am bad about writing thank you notes, so I offer my belated thanks here and now.  I mentioned that I had receive the CD a few weeks ago when you posted asking about me :)  I was very surprised and pleased that you would follow up on our chat, and so quickly!

        You are a very talented musician, and the CD is a great collection of toe-tapping tunes.  I have always admired fiddlers, being a former guitar player myself.  It sounds like you may be taking a break from playing with your treatment and all, but I know that music is very important to you, so I hope you will be playing again before very long!

        I should reciprocate with some CDs burned from some of the locals I mentioned – Younder Mountain String Band and String Cheeze Incident are both good bands from Colorado.

        Thank You,

        Jim

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        Jim in Denver
        Participant

        Dian – Stop with the North Dakota jokes:)

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      CaptAaron
      Participant

      WOW!!  You people are amazing!  Thank you so very much for the quick responses and valuable inputs.  This is just what I was looking for relative to the weighing the options, past experiences of those with similar diagnosis, and treatment regimens.  I think I may give the self injections another week or so to see if I can build a tolerance of sorts, but if there isn't some drastic improvement I'm gonna bail on them and continue with scans and skin checks.  My next round of scans will be December.  Honestly the self injection yesterday was my first and it was the most miserable I've been throughout this entire process.  Not going to keep that up for the minimal benefits that have been found thus far.  I asked about the Ipi trial and they did say it was more for people with more advanced stages of disease. 

      Has anyone ever questioned the validity or applicability of a blanket staging process for people with this disease?  I understand that such a process is necessary for establishing standards of practice, but as we all know, everyone is inidvidualized especially when it comes to this disease, and what works for one Stage IIIA might be completely different for another Stage IIIA.  I'm sure the docs have wrestled with this dilema before and made the best decision possible based on studies, stats, and levels of information that I can't begin to uncover.  But the more we all start to understand about the disease, the more it becomes evident that specific tailoring of treatment plans for individuals would be a smarter way to go.  I don't mean to question melanoma experts, but it seems they're not too sure of themselves in the first place.  Just a little philosophy for y'all.

      Again, thank you all very much, and please keep the posts coming, as we all know by now and is evident by years of military training…knowledge and good information is key in every battle/war. 

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        Jim in Denver
        Participant

        Hi Capt,

        I too would like to thank you for your service to our country.  Now if  your colleagues could just get Discovery off the ground………just kidding! 

        As far as questioning the staging process, that would be kind of like asking your superior officer why you need to salute them IMHO.  We have this system in place that is not perfect, but all the Docs follow it so you won't get too far with your question, even though you raise many good issues.  I know I wrestled with some of those issues too, but you can't really fight the system, so I saved my energy to fight my own battle and use the system as best I could to help me.  We all wish we had more treatment options and choices about whether and how to use them, regardless of "Stage".  I am Stage IV so I have had more options, but I would rather be Stage III with no evidence of disease, Sir.  Experts don't have all the answers (unless they outrank you, of course), which was really the answer to the question you asked originally, wasn't it?

        The Ipi trial info I gave you is not available at MDA, so chances are that they won't help you with it.  I have great respect for MDA, but understand the "system" – many melanoma centers, even ones as good as MDA, will not recommend you go anywhere else.  If you are interested in the trial I mentioned, then contact the folks in Dallas directly.  If you do that, be sure to ask them about "inclusion" and "exclusion" criteria for the trial, and if it is even still open at their location.  "Anon" above mentioned that apparently you must have some "measurable disease", so that would be worth asking about as well.

        Best Wishes,

        Jim

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        Jim in Denver
        Participant

        Hi Capt,

        I too would like to thank you for your service to our country.  Now if  your colleagues could just get Discovery off the ground………just kidding! 

        As far as questioning the staging process, that would be kind of like asking your superior officer why you need to salute them IMHO.  We have this system in place that is not perfect, but all the Docs follow it so you won't get too far with your question, even though you raise many good issues.  I know I wrestled with some of those issues too, but you can't really fight the system, so I saved my energy to fight my own battle and use the system as best I could to help me.  We all wish we had more treatment options and choices about whether and how to use them, regardless of "Stage".  I am Stage IV so I have had more options, but I would rather be Stage III with no evidence of disease, Sir.  Experts don't have all the answers (unless they outrank you, of course), which was really the answer to the question you asked originally, wasn't it?

        The Ipi trial info I gave you is not available at MDA, so chances are that they won't help you with it.  I have great respect for MDA, but understand the "system" – many melanoma centers, even ones as good as MDA, will not recommend you go anywhere else.  If you are interested in the trial I mentioned, then contact the folks in Dallas directly.  If you do that, be sure to ask them about "inclusion" and "exclusion" criteria for the trial, and if it is even still open at their location.  "Anon" above mentioned that apparently you must have some "measurable disease", so that would be worth asking about as well.

        Best Wishes,

        Jim

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        dian in spokane
        Participant

        Cancer staging is pretty set. I mean..they have whole symposiums about it, and it takes a lot to change staging criteria. But..the other thing you touch on is different…

        Targeting treatment for individuals with cancer is in a very dynamic spot at this point in history, and that's because of advances in genetics. It's only been relatively recently that the scientific community has been able to test for specific gene mutations, and it's starting to pay off.

        For example, for patients with mucousal melanoma, they are now able to do C Kit testing and if one is positive, they can use Gleevac fairly sucessfully (see JerryfromFauq's profile for info) Likewise, the BRAF and MEK mutations may be leading to sucessful treatments.

        Hopefully, the time will come when they can test a person and KNOW if interferon will help them or not, so that people do not go through such harsh treatment only to have a progression. Hopefully, in another 50 yrs, they'll be able to test a person and find out exactly what treatment will help.

        So that stuff is on the horizon. Keep your melanoma at bay for another decade, and there might be very different options than are out there right now.

        We'd all like to see that happen of course, but it takes time.

        Sometimes.. when I get frustrated with what I think of as the lack of progress in cancer treatments, I remind myself that in the very long history of mankind, it's only been in the last couple of hundred years that human beings even connected lack of handwashing with infection spread. And..not that long before that, humans actually distrusted bathing of any kind…because water came from the ground…where the devil lives :)

        I'm sure if we looked at what actual information they had about cancer say..a hundred years ago, we'd see AMAZING progress.

        I know for certain, that if I had been born in 1853 instead of 1953.. melanoma would have killed me before my 40th birthday. If something else hadn't killed me first!

        Hopefully, you are done dealing with melanoma for  a long while. But educating yourself is a good idea just in case it rears it's ugly face to you again.

        And something else Kevin said is notable. Patients need to look for themselves at treatment options. For advanced melanoma, because there are so few real choices in treatment, trials are often the best choice. And hospitals and treatment centers mostly want you to look at their trials. They don't go telling you 'oh..you don't qualify for this trial, but there's one at our competitors hospital 2 states over that might work for you'. You almost have to do the legwork yourself, find the trial that is of interest to you, and persue it yourself..or at least bring it to your doctor's attention.

        MDA is a great hospital, and you are lucky to go there, but they might not agree with the folks at NCI, or Dana Farber. MDA'a not lying to you..Ipi IS being used mostly for more advanced patients. And most of the trials are for stage 4. AND…because you are stage 3, interferon IS an approved treatment, which keeps you out of the 'trial' realm.

        Anyway, once again..GOOD LUCK! This place you've found has a TON of combined melanoma experience, so ask us whatever! But remember it's you and your docs who have to make the decisions.

        Dian in spokane <————waltzing with melanoma since 1983

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        dian in spokane
        Participant

        Cancer staging is pretty set. I mean..they have whole symposiums about it, and it takes a lot to change staging criteria. But..the other thing you touch on is different…

        Targeting treatment for individuals with cancer is in a very dynamic spot at this point in history, and that's because of advances in genetics. It's only been relatively recently that the scientific community has been able to test for specific gene mutations, and it's starting to pay off.

        For example, for patients with mucousal melanoma, they are now able to do C Kit testing and if one is positive, they can use Gleevac fairly sucessfully (see JerryfromFauq's profile for info) Likewise, the BRAF and MEK mutations may be leading to sucessful treatments.

        Hopefully, the time will come when they can test a person and KNOW if interferon will help them or not, so that people do not go through such harsh treatment only to have a progression. Hopefully, in another 50 yrs, they'll be able to test a person and find out exactly what treatment will help.

        So that stuff is on the horizon. Keep your melanoma at bay for another decade, and there might be very different options than are out there right now.

        We'd all like to see that happen of course, but it takes time.

        Sometimes.. when I get frustrated with what I think of as the lack of progress in cancer treatments, I remind myself that in the very long history of mankind, it's only been in the last couple of hundred years that human beings even connected lack of handwashing with infection spread. And..not that long before that, humans actually distrusted bathing of any kind…because water came from the ground…where the devil lives :)

        I'm sure if we looked at what actual information they had about cancer say..a hundred years ago, we'd see AMAZING progress.

        I know for certain, that if I had been born in 1853 instead of 1953.. melanoma would have killed me before my 40th birthday. If something else hadn't killed me first!

        Hopefully, you are done dealing with melanoma for  a long while. But educating yourself is a good idea just in case it rears it's ugly face to you again.

        And something else Kevin said is notable. Patients need to look for themselves at treatment options. For advanced melanoma, because there are so few real choices in treatment, trials are often the best choice. And hospitals and treatment centers mostly want you to look at their trials. They don't go telling you 'oh..you don't qualify for this trial, but there's one at our competitors hospital 2 states over that might work for you'. You almost have to do the legwork yourself, find the trial that is of interest to you, and persue it yourself..or at least bring it to your doctor's attention.

        MDA is a great hospital, and you are lucky to go there, but they might not agree with the folks at NCI, or Dana Farber. MDA'a not lying to you..Ipi IS being used mostly for more advanced patients. And most of the trials are for stage 4. AND…because you are stage 3, interferon IS an approved treatment, which keeps you out of the 'trial' realm.

        Anyway, once again..GOOD LUCK! This place you've found has a TON of combined melanoma experience, so ask us whatever! But remember it's you and your docs who have to make the decisions.

        Dian in spokane <————waltzing with melanoma since 1983

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      CaptAaron
      Participant

      WOW!!  You people are amazing!  Thank you so very much for the quick responses and valuable inputs.  This is just what I was looking for relative to the weighing the options, past experiences of those with similar diagnosis, and treatment regimens.  I think I may give the self injections another week or so to see if I can build a tolerance of sorts, but if there isn't some drastic improvement I'm gonna bail on them and continue with scans and skin checks.  My next round of scans will be December.  Honestly the self injection yesterday was my first and it was the most miserable I've been throughout this entire process.  Not going to keep that up for the minimal benefits that have been found thus far.  I asked about the Ipi trial and they did say it was more for people with more advanced stages of disease. 

      Has anyone ever questioned the validity or applicability of a blanket staging process for people with this disease?  I understand that such a process is necessary for establishing standards of practice, but as we all know, everyone is inidvidualized especially when it comes to this disease, and what works for one Stage IIIA might be completely different for another Stage IIIA.  I'm sure the docs have wrestled with this dilema before and made the best decision possible based on studies, stats, and levels of information that I can't begin to uncover.  But the more we all start to understand about the disease, the more it becomes evident that specific tailoring of treatment plans for individuals would be a smarter way to go.  I don't mean to question melanoma experts, but it seems they're not too sure of themselves in the first place.  Just a little philosophy for y'all.

      Again, thank you all very much, and please keep the posts coming, as we all know by now and is evident by years of military training…knowledge and good information is key in every battle/war. 

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      washoegal
      Participant

      Hi

      I am also stage 3A, I chose the wait and watch option.  For me the idea of using interferon for a minimul benefit and possible risks just didn't cut it.  However, if I had known then what I know now, that in order to qualify for many of the trails you have to have tried at least one other protocal and failed, I might  have reconsidered.

      Good news is I am 8 months NED!  You have gone this far, try the low dose and see how you do. 

       

      Good luck

       

      Mary

      Stage 3

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      washoegal
      Participant

      Hi

      I am also stage 3A, I chose the wait and watch option.  For me the idea of using interferon for a minimul benefit and possible risks just didn't cut it.  However, if I had known then what I know now, that in order to qualify for many of the trails you have to have tried at least one other protocal and failed, I might  have reconsidered.

      Good news is I am 8 months NED!  You have gone this far, try the low dose and see how you do. 

       

      Good luck

       

      Mary

      Stage 3

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      JoanR
      Participant

      So sorry to hear your news, my best adivice to you is to make sure he sees the best oncologist you can find. There is a great melanoma centre at Columbia as well, with Dr. Howard Kaufman. He has written a great book on Melanoma. This is an excellent site, so make sure you came here for advice and questions and above all support..there is always someone here to talk to.  Its easy for someone to tell you not to worry until you know exactly what is going on, but try and channel your energy and just hang in there…the worst part is waiting and not knowing. Please know you have found a true supportive family here….My best Joan

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        JoanR
        Participant

        sorry I posted this under the wrong topic..but most of the message is applicable…

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        JoanR
        Participant

        sorry I posted this under the wrong topic..but most of the message is applicable…

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      JoanR
      Participant

      So sorry to hear your news, my best adivice to you is to make sure he sees the best oncologist you can find. There is a great melanoma centre at Columbia as well, with Dr. Howard Kaufman. He has written a great book on Melanoma. This is an excellent site, so make sure you came here for advice and questions and above all support..there is always someone here to talk to.  Its easy for someone to tell you not to worry until you know exactly what is going on, but try and channel your energy and just hang in there…the worst part is waiting and not knowing. Please know you have found a true supportive family here….My best Joan

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      Suzan AB
      Participant

      Hello Cap!

      I was stage IIc…ulceration and choose the wait and see approach.  It was one year, almost to the day, when I had three spots on my back return metastatic melanoma…bumped me right up to Stage VIa (sorry Charlie S. I had to type it).  I chose to go on GM-CSF, trade name Leukine, and I successfully fought my insurance company to pay for treatment for off-label use.  (I could not complete Interferon because of the possibility of auto-immune response, I have a paralyzed right-hemi diaphragm, and low thyroid…another story..hahahaaa)   GM-CSF had minor side effects, mainly I was itchy, achy and owie.

      I was NED for 22 months!  I am going to see my oco at UCSF this coming Tuesday to discuss getting a biopsy of two lesions (?) on my right lung…could it be?   My husband tells me to "just cut that lung out cause it doesn't work properly", I say…hummmmm  gotta think on that…LOL, not his lung…they already call me one-lung Sue, should I make it a real statement…

      Anyways, I believe the GM-CSF gave me this additional time.  My next step is…wait for now until I know for sure the results from biopsy (s), then I will scan the posts from our MW'ers (Melanoma Warriors/Warriorists) for what I believe to be the best treatment option for me…do I consider quality vs. quantity?

      You may also want to consider having your tumor studied for Braf and MEK genic mutations markers.  I did in Feb. 2010.  Continue to be pro-active in your care and investigate, investigate, investigate. 

      My best to you and yours with a big virtual hug,

      Suzan AB

      Stage IVa, possible bumped up to Stage IVb (a=skin, b=lungs, c=I don't want to go there!). 

      Its not over until the fat lady sings…and I am not a very good singer!

      P.S.  My brother retired from the Air Force…Rock on Cap!

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      Suzan AB
      Participant

      Hello Cap!

      I was stage IIc…ulceration and choose the wait and see approach.  It was one year, almost to the day, when I had three spots on my back return metastatic melanoma…bumped me right up to Stage VIa (sorry Charlie S. I had to type it).  I chose to go on GM-CSF, trade name Leukine, and I successfully fought my insurance company to pay for treatment for off-label use.  (I could not complete Interferon because of the possibility of auto-immune response, I have a paralyzed right-hemi diaphragm, and low thyroid…another story..hahahaaa)   GM-CSF had minor side effects, mainly I was itchy, achy and owie.

      I was NED for 22 months!  I am going to see my oco at UCSF this coming Tuesday to discuss getting a biopsy of two lesions (?) on my right lung…could it be?   My husband tells me to "just cut that lung out cause it doesn't work properly", I say…hummmmm  gotta think on that…LOL, not his lung…they already call me one-lung Sue, should I make it a real statement…

      Anyways, I believe the GM-CSF gave me this additional time.  My next step is…wait for now until I know for sure the results from biopsy (s), then I will scan the posts from our MW'ers (Melanoma Warriors/Warriorists) for what I believe to be the best treatment option for me…do I consider quality vs. quantity?

      You may also want to consider having your tumor studied for Braf and MEK genic mutations markers.  I did in Feb. 2010.  Continue to be pro-active in your care and investigate, investigate, investigate. 

      My best to you and yours with a big virtual hug,

      Suzan AB

      Stage IVa, possible bumped up to Stage IVb (a=skin, b=lungs, c=I don't want to go there!). 

      Its not over until the fat lady sings…and I am not a very good singer!

      P.S.  My brother retired from the Air Force…Rock on Cap!

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      triciad
      Participant

      Hi Captain Aaron,

      I'm sorry that I have to welcome you to this board.  Everyone here is great with wonderful information.

      In July (09), I was diagnosed at 3B.   I did the whole year of Interferon, and I just finished my last shot two weeks ago.  It wasn't easy, but I think a positive attitude makes all the difference.  I'm a first grade teacher, so my job is both physically and emotionally demanding; however, lives are not on the line…except on ice cream day in the lunchroom!  I didn't miss a day of work, but I was incredibly tired.  My son is in college…another story!…so I didn't have the demands of coming home to two small children each night.  Shot nights  were Tues, Thurs, and Sat.  I went to bed around 7:30 every night.  I still do not have my taste back, and yes, that stinks.  Hopefully it will return soon enough…maybe for Thanksgiving Dinner!

      Doing Interferon is a personal choice.  Some people can't sit back and wait.  Others don't want to listen to family members blame.  The choice, however, is up to you.  I know several people who did the full year and are still alive and NED 5+ years.  It works for some and doesn't work for others.  I looked at the small percentage that it helped (10%) and thought, "Someone has to be in that group…why not me?"

      One thing for sure…whatever decision you make…never look back.  

      If you have any questions about Interferon, please feel free to ask.  I wish you the best with your decision and thank you for serving our country!  God speed!

      Tricia 

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      triciad
      Participant

      Hi Captain Aaron,

      I'm sorry that I have to welcome you to this board.  Everyone here is great with wonderful information.

      In July (09), I was diagnosed at 3B.   I did the whole year of Interferon, and I just finished my last shot two weeks ago.  It wasn't easy, but I think a positive attitude makes all the difference.  I'm a first grade teacher, so my job is both physically and emotionally demanding; however, lives are not on the line…except on ice cream day in the lunchroom!  I didn't miss a day of work, but I was incredibly tired.  My son is in college…another story!…so I didn't have the demands of coming home to two small children each night.  Shot nights  were Tues, Thurs, and Sat.  I went to bed around 7:30 every night.  I still do not have my taste back, and yes, that stinks.  Hopefully it will return soon enough…maybe for Thanksgiving Dinner!

      Doing Interferon is a personal choice.  Some people can't sit back and wait.  Others don't want to listen to family members blame.  The choice, however, is up to you.  I know several people who did the full year and are still alive and NED 5+ years.  It works for some and doesn't work for others.  I looked at the small percentage that it helped (10%) and thought, "Someone has to be in that group…why not me?"

      One thing for sure…whatever decision you make…never look back.  

      If you have any questions about Interferon, please feel free to ask.  I wish you the best with your decision and thank you for serving our country!  God speed!

      Tricia 

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      Sharyn
      Participant

      Hi there Aaron, and welcome to the board, although the reason you're here really sucks. Everyone else has provided you with lots of experience and good advice, so I won't go there. I do, however, want you to read 3 articles about interferon. It will help to read them in order. Whether to do INF or not is in itself an ongoing debate, but whether to do 4 wks HD only vs the full year is also debatable. Personally, I didn't do INF. I was supposed to, but wound issues delayed my healing after surgery, and I went waaay past the recommended 56 days post-op start time. Anyway, have a look at these, and make your own decision. You may feel that the 4 wks you've done already might be enough.

      Hugs

      Sharyn, Stage IV

      http://theoncologist.alphamedpress.org/cgi/content/full/10/9/739 

      http://theoncologist.alphamedpress.org/cgi/content/full/11/5/538 

      http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/8505 

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      Sharyn
      Participant

      Hi there Aaron, and welcome to the board, although the reason you're here really sucks. Everyone else has provided you with lots of experience and good advice, so I won't go there. I do, however, want you to read 3 articles about interferon. It will help to read them in order. Whether to do INF or not is in itself an ongoing debate, but whether to do 4 wks HD only vs the full year is also debatable. Personally, I didn't do INF. I was supposed to, but wound issues delayed my healing after surgery, and I went waaay past the recommended 56 days post-op start time. Anyway, have a look at these, and make your own decision. You may feel that the 4 wks you've done already might be enough.

      Hugs

      Sharyn, Stage IV

      http://theoncologist.alphamedpress.org/cgi/content/full/10/9/739 

      http://theoncologist.alphamedpress.org/cgi/content/full/11/5/538 

      http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/8505 

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      patobs01
      Participant

      Hi Aaron,

      I was diagnosed as IIIA in October, 2009 and have been through the same pattern of treatments as you (WLE, SNB with micro metastisis to one node, and 4 weeks high dose Interferon. Prior to the Interferon treatment I consulted with four doctors (two melanoma specialist – one at the Mayo Clinic in MN). Two drs. were for interferon treatments, and two recommended the "wait & see" approach. After reading everything that I could about Interferon I figured that there wasn't any one side-effect that I couldn't handle so I went forward with the 4 week high dose treatment and stopped there. I didn't stop due to the side effects as much as that  two of the drs. felt that the benefits of Interferon were to be had in the first four weeks high dose treatment. I did not work during my treatment as you are, but I found the depression, (even while on Zoloft) , fatigue and the "chemo-brain" to be difficult . It actually lasted until about 3/4 weeks after my final treatment, and amazingly I woke up one morning and it was like a curtain had lifted and taken the side effects with it. I am happy to say that I have had two PET scans since the treatment ended in 1/10 and both have been clear. I am praying that you have the same outcome!

      Take care,

      Pat O. IIIA, but NED now

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      patobs01
      Participant

      Hi Aaron,

      I was diagnosed as IIIA in October, 2009 and have been through the same pattern of treatments as you (WLE, SNB with micro metastisis to one node, and 4 weeks high dose Interferon. Prior to the Interferon treatment I consulted with four doctors (two melanoma specialist – one at the Mayo Clinic in MN). Two drs. were for interferon treatments, and two recommended the "wait & see" approach. After reading everything that I could about Interferon I figured that there wasn't any one side-effect that I couldn't handle so I went forward with the 4 week high dose treatment and stopped there. I didn't stop due to the side effects as much as that  two of the drs. felt that the benefits of Interferon were to be had in the first four weeks high dose treatment. I did not work during my treatment as you are, but I found the depression, (even while on Zoloft) , fatigue and the "chemo-brain" to be difficult . It actually lasted until about 3/4 weeks after my final treatment, and amazingly I woke up one morning and it was like a curtain had lifted and taken the side effects with it. I am happy to say that I have had two PET scans since the treatment ended in 1/10 and both have been clear. I am praying that you have the same outcome!

      Take care,

      Pat O. IIIA, but NED now

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