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Looking for feedback and ideas, stage III and elderly, long…

Forums General Melanoma Community Looking for feedback and ideas, stage III and elderly, long…

  • Post
    Janner
    Participant

    This is a bit complicated and long.  Father, age 86, had a stage IIA (2.22mm) melanoma removed 5 years ago.  He refused the SNB and didn't want to consider treatment.  The SNB would have been under his right arm and I knew he wouldn't have dealt with any complications well with his dominant arm.  He was still swimming and playing tennis and both would have been compromised with any complications –  so he just did the WLE. 

    This is a bit complicated and long.  Father, age 86, had a stage IIA (2.22mm) melanoma removed 5 years ago.  He refused the SNB and didn't want to consider treatment.  The SNB would have been under his right arm and I knew he wouldn't have dealt with any complications well with his dominant arm.  He was still swimming and playing tennis and both would have been compromised with any complications –  so he just did the WLE. 

    In the meantime, he has been diagnosed with stage IV prostate cancer and stage IB lung cancer.  He had radiation for the lung cancer which appears curative, to date (2+ years out).  The prostate cancer is in some bones, but is not of major concern at this moment.

    He is a vet and is treated at the VA.  Last week, he was at a regular derm appointment to remove some AKs and SCC.  The derm told him he had cancer all throughout his body and it was very serious.  Family confab today.  He had a PET/CT last December but we never got the results.  Turns out, he had two biopsies before Christmas and never told his kids.  I went up to the VA and pulled all his medical records today.  Did some quick reading and it turns out he now has thyroid cancer (been there a long time and slow growing – not a major concern) and a lymph node in his axilla positive for melanoma.  The PET/CT shows no other hot spots so it is possible that the melanoma is still confined to that lymph node and/or basin.

    We see the onc in 2 weeks.  But I'm just thinking things through and trying to come up with ideas I think would work for my Dad.   

    Do we do nothing?  What happens as the node continues to grow? 

    Do we cherry pick the enlarged node and minimize damage in the basin?  Remove obvious melanoma and "watch and wait"?

    Do we push for the LND?  I know that wouldn't be the first choice for my Dad.  He really isn't excited for more surgery.  I can see the onc recommending this.

    Do we consider radiation to the basin?  Might that slow down growth and give him more time?

    I don't see chemo, interferon or any harsh treatment as a valid option.  My Dad is still mentally all there.  It is very possible that melanoma won't be what kills him.  He has plenty of issues.  It's taken 5 years for melanoma to show any visible signs in this lymph node.  So far, not lightning fast spread.

    Have I forgotten anything?  Any ideas on what you might do/suggest in this situation?  Not looking for a cure here, just looking at extending life and comfort a bit.  Just want to make sure I haven't forgotten something obvious.

    Thanks,

    Janner

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  • Replies
      dian in spokane
      Participant

      Jan! How's your dad feel about a LND?

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        Janner
        Participant

        I don't think the LND would be an easy sell.  He walks with a cane now and this would be the same arm.  It's probably what the onc will recommend, though.  I want to think of all the options I can when we confront the onc.

        Thanks,

        Jan

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        Vermont_Donna
        Participant

        Hi Janner,

        So strange to see you post with a question or concerns, you are so very often the "expert voice" on this board, very knowledgeable and soothing in your posts to others. I strive to be like you!

        Regarding your dad…what a remarkable and strong dad! I have several thoughts, but a question first…..is his thyroid, prostrate and other cancer at all melanoma metastases?? Or are they the separate cancers that you named?? If so I am thinking wow….three or more different cancers??

        Regarding the melanoma in the lymph node…it seems surgery to remove would be the best option and then perhaps radiation. A systemic treatment like Ipi after?? I can see that your dad would not want an LND and possible resulting lymphadema or other impairment since he is so active.

        The thing with these posts is that I cant scroll up and review your post to see what else sparks a thought now that I have hit reply after the last post. So you and your dad have both had a melanoma diagnosis also. 

        How is it he had two biopsies without telling you kids?? I hope he is being open and forthcoming with you, and is clearly able to hear the options explained to him, and with your guidance and the families support, go forth with the best treatment options to give him another decade or two!

        My thoughts are with you Janner as you and your family and dad move through this.

        Vermont_Donna

        stage 3a

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        Janner
        Participant

        Thanks, Donna.  You're right, I rarely post with questions.  I feel I probably know the answers with this question, too, but just don't want to miss anything.

        My Dad has stage IV prostate cancer with mets to the hip and femur.  PSA off the charts.  It appears to be under control at the moment.  He also had non-small cell adenocarcinoma (lung cancer).  They biopsied the lung to rule out melanoma at the time of diagnosis.  He had 4D radiation (3 high dose sessions) and all appears well with the lung.  The thyroid issue is thyroid cancer, not melanoma mets.  And melanoma.  You could add many SCC's for a total of 5 different cancers.  And all in a family with no history of cancer.  My history doesn't count – I'm actually adopted so my familial melanoma gene (CDKN2A) doesn't come from him!

        Dad doesn't usually hide things – he just didn't tell us about the appointment.  Probably didn't even realize he was having a biopsy, just showed up when the reminder said he should be there.  But no one followed up and gave him the results – so I had to read through 100 pages of his medical history to get this info.  Good thing I've had practice reading path reports.   I don't think he'll do a systemic treatment however something like Temodar which has few side effects might be an option.  I don't think IPI will be the right choice for him.

        Thanks for responding and for the good wishes,

        Janner

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        Janner
        Participant

        Thanks, Donna.  You're right, I rarely post with questions.  I feel I probably know the answers with this question, too, but just don't want to miss anything.

        My Dad has stage IV prostate cancer with mets to the hip and femur.  PSA off the charts.  It appears to be under control at the moment.  He also had non-small cell adenocarcinoma (lung cancer).  They biopsied the lung to rule out melanoma at the time of diagnosis.  He had 4D radiation (3 high dose sessions) and all appears well with the lung.  The thyroid issue is thyroid cancer, not melanoma mets.  And melanoma.  You could add many SCC's for a total of 5 different cancers.  And all in a family with no history of cancer.  My history doesn't count – I'm actually adopted so my familial melanoma gene (CDKN2A) doesn't come from him!

        Dad doesn't usually hide things – he just didn't tell us about the appointment.  Probably didn't even realize he was having a biopsy, just showed up when the reminder said he should be there.  But no one followed up and gave him the results – so I had to read through 100 pages of his medical history to get this info.  Good thing I've had practice reading path reports.   I don't think he'll do a systemic treatment however something like Temodar which has few side effects might be an option.  I don't think IPI will be the right choice for him.

        Thanks for responding and for the good wishes,

        Janner

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        Vermont_Donna
        Participant

        Hi Janner,

        So strange to see you post with a question or concerns, you are so very often the "expert voice" on this board, very knowledgeable and soothing in your posts to others. I strive to be like you!

        Regarding your dad…what a remarkable and strong dad! I have several thoughts, but a question first…..is his thyroid, prostrate and other cancer at all melanoma metastases?? Or are they the separate cancers that you named?? If so I am thinking wow….three or more different cancers??

        Regarding the melanoma in the lymph node…it seems surgery to remove would be the best option and then perhaps radiation. A systemic treatment like Ipi after?? I can see that your dad would not want an LND and possible resulting lymphadema or other impairment since he is so active.

        The thing with these posts is that I cant scroll up and review your post to see what else sparks a thought now that I have hit reply after the last post. So you and your dad have both had a melanoma diagnosis also. 

        How is it he had two biopsies without telling you kids?? I hope he is being open and forthcoming with you, and is clearly able to hear the options explained to him, and with your guidance and the families support, go forth with the best treatment options to give him another decade or two!

        My thoughts are with you Janner as you and your family and dad move through this.

        Vermont_Donna

        stage 3a

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        Janner
        Participant

        I don't think the LND would be an easy sell.  He walks with a cane now and this would be the same arm.  It's probably what the onc will recommend, though.  I want to think of all the options I can when we confront the onc.

        Thanks,

        Jan

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      dian in spokane
      Participant

      Jan! How's your dad feel about a LND?

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      Jerry from Cape Cod
      Participant

      Hi Janner,

      I'm so sorry to hear about your dad.  I had much the same experience with my Dad at 85.  In his case it was stomach cancer.  He was offered some treatments that would have extended life while affecting the quality.

      He worked with his oncologist to only do "life quality" care.  He remained active and working up until the week he died.  He was able to spend wonderful time with his immediate and large extended family.  We threw a family party at his home just as he started the decline.

      He did it his way and while it wasn't easy it seemed the right thing to do.

      My prayers are with you and your family.

      Jerry from Cape Cod

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        Janner
        Participant

        Thanks, Jerry.  Dad is going to want quality, too, like your Dad. That's why I'm brainstorming.  What treatment can we do that is minimal that might improve or extend life.  I'm not sure Dad will want to do anything and that's ok, too.  I just don't want to miss any minimal options because the oncologist didn't think of them.  He's had good care, for the most part, at the VA.  I just want to make sure he gets what's best for him!

        Thanks again,

        Jan

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        Janner
        Participant

        Thanks, Jerry.  Dad is going to want quality, too, like your Dad. That's why I'm brainstorming.  What treatment can we do that is minimal that might improve or extend life.  I'm not sure Dad will want to do anything and that's ok, too.  I just don't want to miss any minimal options because the oncologist didn't think of them.  He's had good care, for the most part, at the VA.  I just want to make sure he gets what's best for him!

        Thanks again,

        Jan

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      Jerry from Cape Cod
      Participant

      Hi Janner,

      I'm so sorry to hear about your dad.  I had much the same experience with my Dad at 85.  In his case it was stomach cancer.  He was offered some treatments that would have extended life while affecting the quality.

      He worked with his oncologist to only do "life quality" care.  He remained active and working up until the week he died.  He was able to spend wonderful time with his immediate and large extended family.  We threw a family party at his home just as he started the decline.

      He did it his way and while it wasn't easy it seemed the right thing to do.

      My prayers are with you and your family.

      Jerry from Cape Cod

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      lhaley
      Participant

      Your father has had a rough road lately however, he must have one hell of an imune system to be fighting all of this at basically the same time and being able to keep it under control.  Surgery is difficult at any age but with your father's issues I would think that a full LND might be too much, plus he's not crazy about it.   If it was me making the decision about my own health I would cherry pick. Actually that's what I've been doing and so far it's worked for me but I realize it's not right for everyone.  I would be worried about a systemic treatment with all of his other cancers. You definitely don't want to activate or irritate the others.

      When I sat with my mom while she was making her decisions on how to treat her breast cancer it was more difficult for me than facing my own choices. In the end it's his decision but he needs your support.  Radiation was more exhausting for my mom then the surgery was. Did they not call him back with the results or did he just not want to know? 

      Thinking of you,

      Linda

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        Janner
        Participant

        Thanks, Linda. 

        At this time, I think it's probably cherry picking or nothing.  I think the LND is going to be too much for him – just not a good choice for him.  He had high dose radiation for his lung cancer – 3 doses.  It took a lot out of him.  I could see doing radiation to the axilla, but going 5 days a week for 6 weeks won't appeal to him either.  He doesn't have a lot of stamina so probably not the best choice either.

        Apparently, Dad was supposed to stop at the oncology desk after he had his scans to make an appointment.  The radiology techs had said everything was ok, so he assumed he was fine.  He said he asked if he needed to make an appointment but was told "no".  Dad is hard of hearing so who knows what really was said.  The doctor had an order in for a followup appointment, but my Dad didn't make it.  I still think the VA dropped the ball when no one called him or notified him of the results.

        Thanks for your thoughts!

        Janner

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        o2bcheri
        Participant

        Hi Janner,

         

        i am sorry to hear about your dad..:(

        you know.. when we are older, cancer spreads much slower… they say that usually a person of that age

        will outlive the cancer..

         

        i feel that for your dad… his quality of life is so important.. it sounds like he has a lot going on.. and is still going

        strong… 

        i think that operations… pain etc. would take him down faster than the cancer will.. 

        just my opinion… but.. with it seemingly all over his body.. what good would it do to disturb things.. he will be

        weakened by the surgery.. which might just make the cancer more powerful…

        you are lucky that he is the age he is.. i feel he will outlive the cancer… the little voice inside tells me this..

        and that little voice is seldom wrong.. 

         

        take care… you are a good daughter..

        xx

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        Janner
        Participant

        Thanks for your reply.

        My Dad already has chronic pain.  He had some hairline cracks in his femur after falling from a bicycle (age 84) and it has never healed.  It requires him to use a cane, now.  He's had 3 hip replacements, 2 knee replacements and 2 ankle fusions.  Both shoulders are bone-on-bone.  He's the bionic man.  Short term surgical pain doesn't worry me too much if he can do it without pain meds (usually his choice).  His last knee replacement was just over a year ago.  However, lymphedema and other complications from a LND or invasive surgery don't appeal to me (or him, I'm sure).  

        In the end, I suspect he'll do nothing and just go on.  I'm fine with that.  I'm just trying to make sure I exhaust all possibilities for minimally invasive ideas that won't compromise quality but possible extend quantity.  He's pretty headstrong and, in the end, will do exactly what he wants.  I just want to make sure reasonable options are presented.

        Thanks again,

        Janner

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        Janner
        Participant

        Thanks for your reply.

        My Dad already has chronic pain.  He had some hairline cracks in his femur after falling from a bicycle (age 84) and it has never healed.  It requires him to use a cane, now.  He's had 3 hip replacements, 2 knee replacements and 2 ankle fusions.  Both shoulders are bone-on-bone.  He's the bionic man.  Short term surgical pain doesn't worry me too much if he can do it without pain meds (usually his choice).  His last knee replacement was just over a year ago.  However, lymphedema and other complications from a LND or invasive surgery don't appeal to me (or him, I'm sure).  

        In the end, I suspect he'll do nothing and just go on.  I'm fine with that.  I'm just trying to make sure I exhaust all possibilities for minimally invasive ideas that won't compromise quality but possible extend quantity.  He's pretty headstrong and, in the end, will do exactly what he wants.  I just want to make sure reasonable options are presented.

        Thanks again,

        Janner

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        o2bcheri
        Participant

        Hi Janner,

         

        i am sorry to hear about your dad..:(

        you know.. when we are older, cancer spreads much slower… they say that usually a person of that age

        will outlive the cancer..

         

        i feel that for your dad… his quality of life is so important.. it sounds like he has a lot going on.. and is still going

        strong… 

        i think that operations… pain etc. would take him down faster than the cancer will.. 

        just my opinion… but.. with it seemingly all over his body.. what good would it do to disturb things.. he will be

        weakened by the surgery.. which might just make the cancer more powerful…

        you are lucky that he is the age he is.. i feel he will outlive the cancer… the little voice inside tells me this..

        and that little voice is seldom wrong.. 

         

        take care… you are a good daughter..

        xx

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        Janner
        Participant

        Thanks, Linda. 

        At this time, I think it's probably cherry picking or nothing.  I think the LND is going to be too much for him – just not a good choice for him.  He had high dose radiation for his lung cancer – 3 doses.  It took a lot out of him.  I could see doing radiation to the axilla, but going 5 days a week for 6 weeks won't appeal to him either.  He doesn't have a lot of stamina so probably not the best choice either.

        Apparently, Dad was supposed to stop at the oncology desk after he had his scans to make an appointment.  The radiology techs had said everything was ok, so he assumed he was fine.  He said he asked if he needed to make an appointment but was told "no".  Dad is hard of hearing so who knows what really was said.  The doctor had an order in for a followup appointment, but my Dad didn't make it.  I still think the VA dropped the ball when no one called him or notified him of the results.

        Thanks for your thoughts!

        Janner

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      lhaley
      Participant

      Your father has had a rough road lately however, he must have one hell of an imune system to be fighting all of this at basically the same time and being able to keep it under control.  Surgery is difficult at any age but with your father's issues I would think that a full LND might be too much, plus he's not crazy about it.   If it was me making the decision about my own health I would cherry pick. Actually that's what I've been doing and so far it's worked for me but I realize it's not right for everyone.  I would be worried about a systemic treatment with all of his other cancers. You definitely don't want to activate or irritate the others.

      When I sat with my mom while she was making her decisions on how to treat her breast cancer it was more difficult for me than facing my own choices. In the end it's his decision but he needs your support.  Radiation was more exhausting for my mom then the surgery was. Did they not call him back with the results or did he just not want to know? 

      Thinking of you,

      Linda

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      Kim K
      Participant

      Hi Janner,

      How nice to see a face with your name :).  I am also very sad to hear of your father's troubles, how often does one have 4 different cancers at once?!

      I was looking at clinicaltrials.gov and noticed that ipi is also being used / studied for cancers of the prostate, thyroid, and lung as well.  I don't know how he will fair in his condition but if his other smoldering cancers stay that way, Ipi may be the one drug that will kill many birds with one stone so to speak.

      There also seems to be a good vaccine being tested for prostate cancer, and in fact I think it was approved and is called Provenge.

      I hope your dad isn't in too much discomfort with his mets all over the place.  He is lucky to have a daughter like yourself to help wade through these issues.  I bet his docs are at a loss with all the different cancers.  If he can handle Ipi, it may be worth a try with the prostate vaccine.  What about radioiodine treatment for the thyroid cancer?  It helps to knock it back quite a bit. 

      We do that with cats if the owners can afford it.  Then again, the thyroid cats are usually symptomatic and at great risk for clots and heart disease if left untreated.

      Best regards,

      Kim

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        Janner
        Participant

        Thanks for the info, Kim. 

        I have not heard of Provenge.  I did a little searching.  I'm not sure he would be able to get the vaccine because he has not failed hormone therapy.  He can't tolerate the "hot flashes", etc. so he has taken himself off the hormone therapy.  The hormone therapy did reduce his PSA to almost nothing, but he won't stay on the therapy.  He asked me the other day if he should go back on the therapy and I said let's see what your most recent PSA is.  It hasn't been tested for almost 6 months.  If it has made a major jump upward again, then the prostate cancer probably needs to be addressed again.

        As for IPI, I had not seen that it may also help with prostate cancer.  That is interesting.  I'm not sure he will have access to compassionate use IPI at the VA, but who knows.  He would never qualify for a clinical trial.  I worry about the possible side effects.  The gastrointesting side effects worry me as well as the possible nephritis.  He doesn't have great kidney function as it is right now.  He has had to delay some treatments for the prostate bone mets (Zometa?) because his kidney function was borderline.  However, it is certainly worth bringing up in discussion with the oncologist. 

        At this time, I think we'll probably ignore the thyroid cancer.  He's had a goiter for years and this growth has been there along with the goiter for the last 5 years he's had scans.  I figure this is the least of his worries right now.

        You are right about one thing, the different cancers have made him very hard to treat.  He sees someone for the lung cancer, a urologist for the prostate cancer… but where I feel the VA has let him down is there is no good coordination between all the disciplines.  The PCP just isn't equipped to coordinate all the care.  The general oncologist isn't a specialist in anything and hasn't seemed to take up the cause.  Each discipline would treat him,  but they don't seem to be able to coordinate his complex medical problems well.

        Thanks again for your input!

        Janner

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        Janner
        Participant

        Thanks for the info, Kim. 

        I have not heard of Provenge.  I did a little searching.  I'm not sure he would be able to get the vaccine because he has not failed hormone therapy.  He can't tolerate the "hot flashes", etc. so he has taken himself off the hormone therapy.  The hormone therapy did reduce his PSA to almost nothing, but he won't stay on the therapy.  He asked me the other day if he should go back on the therapy and I said let's see what your most recent PSA is.  It hasn't been tested for almost 6 months.  If it has made a major jump upward again, then the prostate cancer probably needs to be addressed again.

        As for IPI, I had not seen that it may also help with prostate cancer.  That is interesting.  I'm not sure he will have access to compassionate use IPI at the VA, but who knows.  He would never qualify for a clinical trial.  I worry about the possible side effects.  The gastrointesting side effects worry me as well as the possible nephritis.  He doesn't have great kidney function as it is right now.  He has had to delay some treatments for the prostate bone mets (Zometa?) because his kidney function was borderline.  However, it is certainly worth bringing up in discussion with the oncologist. 

        At this time, I think we'll probably ignore the thyroid cancer.  He's had a goiter for years and this growth has been there along with the goiter for the last 5 years he's had scans.  I figure this is the least of his worries right now.

        You are right about one thing, the different cancers have made him very hard to treat.  He sees someone for the lung cancer, a urologist for the prostate cancer… but where I feel the VA has let him down is there is no good coordination between all the disciplines.  The PCP just isn't equipped to coordinate all the care.  The general oncologist isn't a specialist in anything and hasn't seemed to take up the cause.  Each discipline would treat him,  but they don't seem to be able to coordinate his complex medical problems well.

        Thanks again for your input!

        Janner

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      Kim K
      Participant

      Hi Janner,

      How nice to see a face with your name :).  I am also very sad to hear of your father's troubles, how often does one have 4 different cancers at once?!

      I was looking at clinicaltrials.gov and noticed that ipi is also being used / studied for cancers of the prostate, thyroid, and lung as well.  I don't know how he will fair in his condition but if his other smoldering cancers stay that way, Ipi may be the one drug that will kill many birds with one stone so to speak.

      There also seems to be a good vaccine being tested for prostate cancer, and in fact I think it was approved and is called Provenge.

      I hope your dad isn't in too much discomfort with his mets all over the place.  He is lucky to have a daughter like yourself to help wade through these issues.  I bet his docs are at a loss with all the different cancers.  If he can handle Ipi, it may be worth a try with the prostate vaccine.  What about radioiodine treatment for the thyroid cancer?  It helps to knock it back quite a bit. 

      We do that with cats if the owners can afford it.  Then again, the thyroid cats are usually symptomatic and at great risk for clots and heart disease if left untreated.

      Best regards,

      Kim

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      mom3girlsFL
      Participant

      Hi Janner,

      I, like others, am not used to seeing you post with questions.  I remember coming here way back when I was first diagnosed and reading your responses to others with such knowledge and compassion.  It looks to me like you've already gotten all your information to go with your dad to the onc visit.  I know it sucks, but all you can do is inform him of the options, make sure he understands,  and let him decide his path.  His not telling you all about the recent tests makes me wonder if he's already dealt with the outcomes or he doesn't understand what's going on.  That would be my biggest concern now.

      Either way, he's very lucky to have you on his side!  I wish you luck and let us know how it goes.

      Laurie

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        Janner
        Participant

        Thanks, Laurie.

        As for my Dad not telling us about the last tests, I think it is a combo of things.  My brother used to take him to all his appointments.  I still thought he was doing that.  But it turns out there were some issues there that I hadn't heard about – and his cancers seemed to be stable.  In general, Dad is pretty independent.  He's really not the type to keep things from us, he was just taking care of business.  But we are back to making sure at least one of us is at each appointment.

        Thanks again,

        Janner

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        Janner
        Participant

        Thanks, Laurie.

        As for my Dad not telling us about the last tests, I think it is a combo of things.  My brother used to take him to all his appointments.  I still thought he was doing that.  But it turns out there were some issues there that I hadn't heard about – and his cancers seemed to be stable.  In general, Dad is pretty independent.  He's really not the type to keep things from us, he was just taking care of business.  But we are back to making sure at least one of us is at each appointment.

        Thanks again,

        Janner

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      mom3girlsFL
      Participant

      Hi Janner,

      I, like others, am not used to seeing you post with questions.  I remember coming here way back when I was first diagnosed and reading your responses to others with such knowledge and compassion.  It looks to me like you've already gotten all your information to go with your dad to the onc visit.  I know it sucks, but all you can do is inform him of the options, make sure he understands,  and let him decide his path.  His not telling you all about the recent tests makes me wonder if he's already dealt with the outcomes or he doesn't understand what's going on.  That would be my biggest concern now.

      Either way, he's very lucky to have you on his side!  I wish you luck and let us know how it goes.

      Laurie

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      washoegal
      Participant

      Hi Janner,

      I've been thinking about your Dad's situation for a while.  If I were you what I you try to do is "cherry pick"  those lymph nodes that obviously have cancer.  It's a pretty easy surgery, healing time even at his age only a couple of weeks.  There is some thought that ultra-sound might be able to detect mel in lymph nodes so maybe the VA can do regular follow up that way and it's cheap and easy. 

      Not to be a pessimist , but with prostrate cancer already metastasized to the bone, I think taking care of the obvious and keeping him comfortable is best if your Dad's not willing to go into a full on fight.

       

      Love & Good Luck,

      Mary

      Stage 3

       

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      washoegal
      Participant

      Hi Janner,

      I've been thinking about your Dad's situation for a while.  If I were you what I you try to do is "cherry pick"  those lymph nodes that obviously have cancer.  It's a pretty easy surgery, healing time even at his age only a couple of weeks.  There is some thought that ultra-sound might be able to detect mel in lymph nodes so maybe the VA can do regular follow up that way and it's cheap and easy. 

      Not to be a pessimist , but with prostrate cancer already metastasized to the bone, I think taking care of the obvious and keeping him comfortable is best if your Dad's not willing to go into a full on fight.

       

      Love & Good Luck,

      Mary

      Stage 3

       

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        Janner
        Participant

        Thanks, Mary.  I agree that cherry picking may be our best "low impact" strategy.  I plan to see what the onc has to offer, then add my own ideas if he doesn't address them all.  In the end, we will do whatever my Dad wants to do.  But I know he will listen to me if I suggest he do one low impact idea.  I'll only do that if I really think it's in his best interest.  I still need to hear how the onc interprets all the scan reports in case I missed something.

        Thanks again for your input!

        Janner

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        Janner
        Participant

        Thanks, Mary.  I agree that cherry picking may be our best "low impact" strategy.  I plan to see what the onc has to offer, then add my own ideas if he doesn't address them all.  In the end, we will do whatever my Dad wants to do.  But I know he will listen to me if I suggest he do one low impact idea.  I'll only do that if I really think it's in his best interest.  I still need to hear how the onc interprets all the scan reports in case I missed something.

        Thanks again for your input!

        Janner

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      JakeinNY
      Participant

      Hi Janner.

      Your Dad is 86. God bless him and I guess that he has!!!  Everything depends on what your dad is game for. Probably minimal change to quality of life is what he wants….a not very difficult surgery, a treatment with small side effects like radiation, etc. If it were my dad, I would suggest these sort of things. One other thing, and I know that many here may not agree, but I would ask him to really limit sugar intake. I think that the connection between sugar, insulin, and tumor progression is well known. Foods with a favorable glycemic index help as well. At this point in his life, I'm sure that he's not going to drastically change his lifestyle but making some changes could indeed prolong his life.

      Best wishes.

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      JakeinNY
      Participant

      Hi Janner.

      Your Dad is 86. God bless him and I guess that he has!!!  Everything depends on what your dad is game for. Probably minimal change to quality of life is what he wants….a not very difficult surgery, a treatment with small side effects like radiation, etc. If it were my dad, I would suggest these sort of things. One other thing, and I know that many here may not agree, but I would ask him to really limit sugar intake. I think that the connection between sugar, insulin, and tumor progression is well known. Foods with a favorable glycemic index help as well. At this point in his life, I'm sure that he's not going to drastically change his lifestyle but making some changes could indeed prolong his life.

      Best wishes.

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        Janner
        Participant

        Thanks, Jake.

        In general, my Dad has always been a pretty healthy eater.  He's always been a physical fitness nut.  (This is the man who broke a leg cycling at age 84 and as recently as two months ago tried again to play some tennis).  He wore out most of his joints by overdoing any sports activity – hence all the artificial joints.  At his age, however, he has started to lose his taste for foods.  I am more concerned about keeping his strength up than anything else.  He doesn't have much stamina.  He's kept his cancers at bay for a reasonable time given his age and stage of progression.  I guess I feel that, at age 86, he deserves something sweet if he wants it.  I tend to have a bit of a differing opinion than you on which sugars might turn on tumor progression, but that also isn't something I discuss with my Dad.  When it comes to food, he will do what he wants. He will mostly be eating a fairly healthy diet, but probably not within the glycemic index guidelines.  My Mom (83) also suffers from lack of appetite/taste and has hypoglycemia.  He will often eat what appeals to my Mom just to get her to eat.  Sometimes, these situations aren't as simple as we'd like.  When it comes to treatment options, he will listen to me when I offer suggestions because he knows I have more knowledge than him about this beast.  He's a headstrong guy and I know which battles I choose to take on!  smiley

        Thanks again for your input!

        Janner 

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        Janner
        Participant

        Thanks, Jake.

        In general, my Dad has always been a pretty healthy eater.  He's always been a physical fitness nut.  (This is the man who broke a leg cycling at age 84 and as recently as two months ago tried again to play some tennis).  He wore out most of his joints by overdoing any sports activity – hence all the artificial joints.  At his age, however, he has started to lose his taste for foods.  I am more concerned about keeping his strength up than anything else.  He doesn't have much stamina.  He's kept his cancers at bay for a reasonable time given his age and stage of progression.  I guess I feel that, at age 86, he deserves something sweet if he wants it.  I tend to have a bit of a differing opinion than you on which sugars might turn on tumor progression, but that also isn't something I discuss with my Dad.  When it comes to food, he will do what he wants. He will mostly be eating a fairly healthy diet, but probably not within the glycemic index guidelines.  My Mom (83) also suffers from lack of appetite/taste and has hypoglycemia.  He will often eat what appeals to my Mom just to get her to eat.  Sometimes, these situations aren't as simple as we'd like.  When it comes to treatment options, he will listen to me when I offer suggestions because he knows I have more knowledge than him about this beast.  He's a headstrong guy and I know which battles I choose to take on!  smiley

        Thanks again for your input!

        Janner 

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      Hi Janner,

      I don't have much advice to offer, but want to wish your father and your family the very best.  After watching my father go through various surgeries, I think the best strategy is what ever allows him to go home quickly.  Hospital stays are not good for people his age.  The food is not great and they don't get much exercise, so they don't eat.  Somehow, there are far too many opportunities to pick up infections that they may have trouble overcoming — antibiotics again having somewhat of an suppressing effect on the appetite.  Healing takes much longer, even in a healthy 86-year old.  The more time you spend lying in bed, the greater the opportunity for blood clots etc. etc.  I went through all of this with my father.  So I think that your idea of removing just the affected node is a reasonable one.  Of course, he will have the last word on that, which is as it should be.

      Again, I wish you and your family all the best.  

      ellen

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        Janner
        Participant

        Thanks, Ellen.  I am trying to keep him out of the hospital if at all possible.  If we cherry pick a lymph node, I believe he can have that done under a local.  Anything that keeps him as an inpatient won't be a good choice in his eyes.  I agree, I want him home so everything is as normal as possible!

        Thanks for your good wishes and input,

        Janner

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        Janner
        Participant

        Thanks, Ellen.  I am trying to keep him out of the hospital if at all possible.  If we cherry pick a lymph node, I believe he can have that done under a local.  Anything that keeps him as an inpatient won't be a good choice in his eyes.  I agree, I want him home so everything is as normal as possible!

        Thanks for your good wishes and input,

        Janner

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      Hi Janner,

      I don't have much advice to offer, but want to wish your father and your family the very best.  After watching my father go through various surgeries, I think the best strategy is what ever allows him to go home quickly.  Hospital stays are not good for people his age.  The food is not great and they don't get much exercise, so they don't eat.  Somehow, there are far too many opportunities to pick up infections that they may have trouble overcoming — antibiotics again having somewhat of an suppressing effect on the appetite.  Healing takes much longer, even in a healthy 86-year old.  The more time you spend lying in bed, the greater the opportunity for blood clots etc. etc.  I went through all of this with my father.  So I think that your idea of removing just the affected node is a reasonable one.  Of course, he will have the last word on that, which is as it should be.

      Again, I wish you and your family all the best.  

      ellen

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      Cynthia C
      Participant

      Hi Janner,  I don't know you but I always read your posts. Your honesty, knowledge and kindness is appreciated. You have asked for feedback so here's mine. Let him eat and drink whatever he pleases. Discuss the risks and benefits of all treatment options (he is so fortunate to have you to advise him) then let him decide. Laugh with him, dance with him, dance for him (like nobody's watching!). Let him enjoy his precious little girl all grown up. Listen to his life stories and the life lessons he has to teach. Laugh about all the corny, stupid, silly things that happened long ago. Every family has some of these. As tough as this part of the journey is going to get, I envy you. I never really had anyone to call "Daddy".

      Sending positive thoughts your way,

      Cynthia

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        Janner
        Participant

        Thanks, Cynthia.  Yes, just enjoy the ride.  My Dad is all about that.  He's always worked hard and played hard.  We'll discuss the latest again after we hear from the onc, but it will be whatever makes HIM happy.  At this point in time, there is no point in fighting against him and wanting him to do invasive treatments.  Heck, if there were any fantastic treatments (read CURE) for melanoma, I might have a differing opinion.  Even though there are some promising things on the horizon, they aren't ready for my Dad yet.  So minimal and simple is the ticket.

        Thanks so much for your feedback, I appreciate it!

        Janner

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        Janner
        Participant

        Thanks, Cynthia.  Yes, just enjoy the ride.  My Dad is all about that.  He's always worked hard and played hard.  We'll discuss the latest again after we hear from the onc, but it will be whatever makes HIM happy.  At this point in time, there is no point in fighting against him and wanting him to do invasive treatments.  Heck, if there were any fantastic treatments (read CURE) for melanoma, I might have a differing opinion.  Even though there are some promising things on the horizon, they aren't ready for my Dad yet.  So minimal and simple is the ticket.

        Thanks so much for your feedback, I appreciate it!

        Janner

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      Cynthia C
      Participant

      Hi Janner,  I don't know you but I always read your posts. Your honesty, knowledge and kindness is appreciated. You have asked for feedback so here's mine. Let him eat and drink whatever he pleases. Discuss the risks and benefits of all treatment options (he is so fortunate to have you to advise him) then let him decide. Laugh with him, dance with him, dance for him (like nobody's watching!). Let him enjoy his precious little girl all grown up. Listen to his life stories and the life lessons he has to teach. Laugh about all the corny, stupid, silly things that happened long ago. Every family has some of these. As tough as this part of the journey is going to get, I envy you. I never really had anyone to call "Daddy".

      Sending positive thoughts your way,

      Cynthia

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      JerryfromFauq
      Participant

      Janner, I am very sorry to hear of your Fathers problems. 

         I would definitely cherry pick known bad lymph nodes without doing a mass removal of all nodes in a basin.  I question the wisdon of removing all nodes in a basin anyway, the fewer removed, the quicker the recovery.

         If he has melanoma that can still be seen after the cherry pickin, I would look into the C-kit and BRAF testing and meds.  They seem to be among the easest anti cancer chemotherapys for the body to tolerate and provide a rapid effect on tumors of the patients they work on.  I and a couple of people that I know can speak on the c-kit side and we have all read  here and elsewhere of the BRAF meds.  I have tried to go the quality of life route in  my treatments.  I do suggest that you work at keeping your Father off of horses!

         I also suggest the possibility of taking circumin supplements.  It appears likely that Circumin reduces the rate on reproduction malignant cells.  I started this at the same time as I started the Gleevec.  Something is holding me.

          Will keep your Father in my thoughts.

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        Janner
        Participant

        Hi Jerry,

        Thanks for the feedback.  I'm not sure that the VA will be the place to get BRAF or C-KIT testing for my 86 year old Dad.  He has no other insurance so that is his only option.  Since the oncologist is just a general oncologist he sees, it's likely the guy doesn't even have a clue about that stuff.  I plan on asking him about IPI and I will add C-Kit to the list.  But truthfully, I think that even cherry picking a node might be more than my Dad wants to do.  He might operate better in the "ignorance is bliss" mode at this time.  This latest has him more depressed than I've ever seen him.  I almost think ignoring this might make him the happiest – and THAT is quality, too.

        So you have had minimal side effects from the C-KIT drug? 

        Thanks again,

        Janner

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        JerryfromFauq
        Participant

        The initial C-kit oncoprotein stain test can be done by any lab and should cost about $125.  If this test is negative he won't get/want the c-kit DNA speciaized test.  Will the VA give referrals for outside specialized Oncologists?  I remember my son-in-law getting a refferal that the military paid for  for his back problems.

        The worst side effect I had with Gleeve was before I learned that I soould eat half a meal, taake the pill then eat the rest of the meal.  For me, within 30 days the Gleevec stopped the runaway mucousal c-kit melanoma growth.  That was two years ago this month.  Tumors have stayed stable for these 24 months with no new tumors appearing.  I would sometimes get an upset stomach/vomit if the pill was not taken in the middle of a meal.  Another  common side effect is a little less energy.  My energy dropped more from the horse accident than from the Gleevec.  I do blame the Gleevec for my hair thining out some!

           Which service was your Dad in?

        Wishing him the best.

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        Janner
        Participant

        Hey Jerry,

        I wasn't thinking straight last night.  It's pretty unlikely that Dad has the C-Kit mutation.  His melanoma was certainly not mucosal.  It was superficial spreading on his shoulder blade.  That doesn't rule out B-RAF, however.  If the VA determine that he needs a treatment outside of what they can offer, they will send him elsewhere.  He was sent to the local cancer center for 4D radiation on his lung tumor.  It was state of the art treatment.  But if the VA has treatments available, they may not refer him out.  He has no supplemental insurance or any money to pay for it on his own, so he's at the mercy of the VA.

        Dad was a Marine and served toward the end of WWII in the south Pacific.  He was actually trying to be one of the first Marine pilots, but ran into red tape.  He ended up as a bombadier.  He spent most of his time on islands that had just been liberated – more cleanup than action.  Later he was in China.

        Semper Fi!

        Janner

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        Janner
        Participant

        Hey Jerry,

        I wasn't thinking straight last night.  It's pretty unlikely that Dad has the C-Kit mutation.  His melanoma was certainly not mucosal.  It was superficial spreading on his shoulder blade.  That doesn't rule out B-RAF, however.  If the VA determine that he needs a treatment outside of what they can offer, they will send him elsewhere.  He was sent to the local cancer center for 4D radiation on his lung tumor.  It was state of the art treatment.  But if the VA has treatments available, they may not refer him out.  He has no supplemental insurance or any money to pay for it on his own, so he's at the mercy of the VA.

        Dad was a Marine and served toward the end of WWII in the south Pacific.  He was actually trying to be one of the first Marine pilots, but ran into red tape.  He ended up as a bombadier.  He spent most of his time on islands that had just been liberated – more cleanup than action.  Later he was in China.

        Semper Fi!

        Janner

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        JerryfromFauq
        Participant

        The initial C-kit oncoprotein stain test can be done by any lab and should cost about $125.  If this test is negative he won't get/want the c-kit DNA speciaized test.  Will the VA give referrals for outside specialized Oncologists?  I remember my son-in-law getting a refferal that the military paid for  for his back problems.

        The worst side effect I had with Gleeve was before I learned that I soould eat half a meal, taake the pill then eat the rest of the meal.  For me, within 30 days the Gleevec stopped the runaway mucousal c-kit melanoma growth.  That was two years ago this month.  Tumors have stayed stable for these 24 months with no new tumors appearing.  I would sometimes get an upset stomach/vomit if the pill was not taken in the middle of a meal.  Another  common side effect is a little less energy.  My energy dropped more from the horse accident than from the Gleevec.  I do blame the Gleevec for my hair thining out some!

           Which service was your Dad in?

        Wishing him the best.

        Loading spinner
        Janner
        Participant

        Hi Jerry,

        Thanks for the feedback.  I'm not sure that the VA will be the place to get BRAF or C-KIT testing for my 86 year old Dad.  He has no other insurance so that is his only option.  Since the oncologist is just a general oncologist he sees, it's likely the guy doesn't even have a clue about that stuff.  I plan on asking him about IPI and I will add C-Kit to the list.  But truthfully, I think that even cherry picking a node might be more than my Dad wants to do.  He might operate better in the "ignorance is bliss" mode at this time.  This latest has him more depressed than I've ever seen him.  I almost think ignoring this might make him the happiest – and THAT is quality, too.

        So you have had minimal side effects from the C-KIT drug? 

        Thanks again,

        Janner

        Loading spinner
      JerryfromFauq
      Participant

      Janner, I am very sorry to hear of your Fathers problems. 

         I would definitely cherry pick known bad lymph nodes without doing a mass removal of all nodes in a basin.  I question the wisdon of removing all nodes in a basin anyway, the fewer removed, the quicker the recovery.

         If he has melanoma that can still be seen after the cherry pickin, I would look into the C-kit and BRAF testing and meds.  They seem to be among the easest anti cancer chemotherapys for the body to tolerate and provide a rapid effect on tumors of the patients they work on.  I and a couple of people that I know can speak on the c-kit side and we have all read  here and elsewhere of the BRAF meds.  I have tried to go the quality of life route in  my treatments.  I do suggest that you work at keeping your Father off of horses!

         I also suggest the possibility of taking circumin supplements.  It appears likely that Circumin reduces the rate on reproduction malignant cells.  I started this at the same time as I started the Gleevec.  Something is holding me.

          Will keep your Father in my thoughts.

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