Full Time Job
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Full Time Job

› Forums › General Melanoma Community › Full Time Job

  • Post
    • January 8, 2017 at 11:56 pm
    _Paul_
    Participant

    Hello Family!

    I have come to realize that there is a part of the roller coaster ride where suddenly dealing with Mel becomes a full time job.

    I would have been overwhelmed without all the support I have been receiving. My youngest daughter has assumed the bulk of the load which is non-trivial: rides to the clinic, visits while in hospital, keeping a log of med ingestion, and more.

    To help out with all this, and to just visit me, my oldest daughter flew in from Berlin, Germany, my youngest sister from the Bay Area, and my other sister from the Toronto area. I am a truly lucky dude to have such a loving family.

    It has taken a while to get dialed in post-TIL. I have been going to the clinic daily for antibiotics (my blood grew stuff and I later developed febrile neutropenia which freaked everybody out). I am now on a Fentanyl patch with Dilaudid for breakthrough pain. The only remaining issue is to get on top of is the constipation from the opiates. But my care team is a smart experienced bunch, and I know we will get there.

    Celeste, I carefully read your blog post, and links. Thank you so much for that. It is going to help many people that end up in a similar state as me. But I have to confess that I have little confidence in anything that targets the PD-1 or PD-2 pathways. My body is just not reacting to that type of therapy any longer. I am hoping that Dr. Hamid has some suggestions for me since he has already been dealing with patients similar to me.

    I will be flying there on the 16'th, along with 10 lbs. of medical records. I'm in a good place mentally even though I grow new sub-q's ever day. Yesterday one popped up on my left nipple. I feel like a radical goth tattoo freak with all the new black. If I survive this (I think  Brian or Mat pointed this out), I'm going to have an awesome story.

    – Paul

    P.S. I keep praying for you guys every day. You are all super important to me.

Viewing 47 reply threads
  • Replies
      • January 9, 2017 at 1:06 am
      Jubes
      Participant

      Thanks for posting Paul. It's especially great to read your great attitude and don't we all know how important family is!! Did you initially respond to PD 1 and PD2. If so how long did the response last?

      Anne-Louise 

      • January 9, 2017 at 1:06 am
      Jubes
      Participant

      Thanks for posting Paul. It's especially great to read your great attitude and don't we all know how important family is!! Did you initially respond to PD 1 and PD2. If so how long did the response last?

      Anne-Louise 

      • January 9, 2017 at 1:06 am
      Jubes
      Participant

      Thanks for posting Paul. It's especially great to read your great attitude and don't we all know how important family is!! Did you initially respond to PD 1 and PD2. If so how long did the response last?

      Anne-Louise 

      • January 9, 2017 at 1:15 am
      Bubbles
      Participant

      Hey Paulster!  My goodness…the $$$$$-hits just keep on coming, don't they!  So glad you have so many awesome chicks to help you out!!  That is wonderful.  I understand why you would feel that way about the PD-1 pathway, given your experience.  Fingers crossed for what Dr. Hamid directs you to!  He has an amazing rep so I am expecting him to live up to it!!!  Hang in there, sweetie.  There are so many of us pulling for you!  love, c

      • January 9, 2017 at 1:15 am
      Bubbles
      Participant

      Hey Paulster!  My goodness…the $$$$$-hits just keep on coming, don't they!  So glad you have so many awesome chicks to help you out!!  That is wonderful.  I understand why you would feel that way about the PD-1 pathway, given your experience.  Fingers crossed for what Dr. Hamid directs you to!  He has an amazing rep so I am expecting him to live up to it!!!  Hang in there, sweetie.  There are so many of us pulling for you!  love, c

      • January 9, 2017 at 1:15 am
      Bubbles
      Participant

      Hey Paulster!  My goodness…the $$$$$-hits just keep on coming, don't they!  So glad you have so many awesome chicks to help you out!!  That is wonderful.  I understand why you would feel that way about the PD-1 pathway, given your experience.  Fingers crossed for what Dr. Hamid directs you to!  He has an amazing rep so I am expecting him to live up to it!!!  Hang in there, sweetie.  There are so many of us pulling for you!  love, c

      • January 9, 2017 at 1:45 am
      JoshF
      Participant

      Paul-

      Its good to hear…been reading your posts from earlier. We've both been having a rough go. I thought of going to see Hamid…afraid I may not have enough time. At this point I'm like who knows. Let me know how it goes. I'll be real interested in what he says.

      Josh

        • January 9, 2017 at 2:53 am
        _Paul_
        Participant

        Josh it is so good to hear from you! I am sorry you are having hard time. You are a huge part of the lives of so many people here. I am praying my ass of for you my friend. Don't give up hope. You are still alive.

        This post is the best damn thing to happen to me all week.

        Have you had any success with your liver?

        – Paul

        • January 9, 2017 at 2:22 pm
        JoshF
        Participant

        Paul-

        i had been thinking a lot about you. Things have gotten crazy for us. I'll know more Thursday about liver. I'm having discomfort so that worries me. Like you though, I won't lay down to this crap. I keep thinking I should go try and see Hamid. Didn't think we'd qualify for some of those inhibitors because of previous treatment. Let me know…stay strong my friend!!!

        Josh

        • January 9, 2017 at 2:22 pm
        JoshF
        Participant

        Paul-

        i had been thinking a lot about you. Things have gotten crazy for us. I'll know more Thursday about liver. I'm having discomfort so that worries me. Like you though, I won't lay down to this crap. I keep thinking I should go try and see Hamid. Didn't think we'd qualify for some of those inhibitors because of previous treatment. Let me know…stay strong my friend!!!

        Josh

        • January 9, 2017 at 2:22 pm
        JoshF
        Participant

        Paul-

        i had been thinking a lot about you. Things have gotten crazy for us. I'll know more Thursday about liver. I'm having discomfort so that worries me. Like you though, I won't lay down to this crap. I keep thinking I should go try and see Hamid. Didn't think we'd qualify for some of those inhibitors because of previous treatment. Let me know…stay strong my friend!!!

        Josh

        • January 9, 2017 at 2:53 am
        _Paul_
        Participant

        Josh it is so good to hear from you! I am sorry you are having hard time. You are a huge part of the lives of so many people here. I am praying my ass of for you my friend. Don't give up hope. You are still alive.

        This post is the best damn thing to happen to me all week.

        Have you had any success with your liver?

        – Paul

        • January 9, 2017 at 2:53 am
        _Paul_
        Participant

        Josh it is so good to hear from you! I am sorry you are having hard time. You are a huge part of the lives of so many people here. I am praying my ass of for you my friend. Don't give up hope. You are still alive.

        This post is the best damn thing to happen to me all week.

        Have you had any success with your liver?

        – Paul

      • January 9, 2017 at 1:45 am
      JoshF
      Participant

      Paul-

      Its good to hear…been reading your posts from earlier. We've both been having a rough go. I thought of going to see Hamid…afraid I may not have enough time. At this point I'm like who knows. Let me know how it goes. I'll be real interested in what he says.

      Josh

      • January 9, 2017 at 1:45 am
      JoshF
      Participant

      Paul-

      Its good to hear…been reading your posts from earlier. We've both been having a rough go. I thought of going to see Hamid…afraid I may not have enough time. At this point I'm like who knows. Let me know how it goes. I'll be real interested in what he says.

      Josh

      • January 9, 2017 at 1:48 am
      BrianP
      Participant

      Thanks for the update Paul.  I always suspected you were a stud and now with all those ladies there supporting you I know it's true.  You and Josh are at the top of my prayer list.  I hope Dr. Hamid has something good for you.  I've always been impressed with his talks on various subjects.

      Brian

      • January 9, 2017 at 1:48 am
      BrianP
      Participant

      Thanks for the update Paul.  I always suspected you were a stud and now with all those ladies there supporting you I know it's true.  You and Josh are at the top of my prayer list.  I hope Dr. Hamid has something good for you.  I've always been impressed with his talks on various subjects.

      Brian

      • January 9, 2017 at 1:48 am
      BrianP
      Participant

      Thanks for the update Paul.  I always suspected you were a stud and now with all those ladies there supporting you I know it's true.  You and Josh are at the top of my prayer list.  I hope Dr. Hamid has something good for you.  I've always been impressed with his talks on various subjects.

      Brian

      • January 9, 2017 at 2:01 am
      Polymath
      Participant

      Hey Paul,

      Great to get an update and you sure know how to ride that roller-coaster in style.  Sounds like you are in good hands, and these specialists always seem to have another tool in the toolbox.  I had mentioned IDO inhibitor Epacadostat (still in trials) as a great possible next step.  I too am in the same boat having progressed on anti PD-1.  This was the recommended course for me.  Whatever happens, we look forward to your positive and inspiring updates.

      Gary

      • January 9, 2017 at 2:01 am
      Polymath
      Participant

      Hey Paul,

      Great to get an update and you sure know how to ride that roller-coaster in style.  Sounds like you are in good hands, and these specialists always seem to have another tool in the toolbox.  I had mentioned IDO inhibitor Epacadostat (still in trials) as a great possible next step.  I too am in the same boat having progressed on anti PD-1.  This was the recommended course for me.  Whatever happens, we look forward to your positive and inspiring updates.

      Gary

      • January 9, 2017 at 2:01 am
      Polymath
      Participant

      Hey Paul,

      Great to get an update and you sure know how to ride that roller-coaster in style.  Sounds like you are in good hands, and these specialists always seem to have another tool in the toolbox.  I had mentioned IDO inhibitor Epacadostat (still in trials) as a great possible next step.  I too am in the same boat having progressed on anti PD-1.  This was the recommended course for me.  Whatever happens, we look forward to your positive and inspiring updates.

      Gary

      • January 9, 2017 at 4:09 am
      casagrayson
      Participant

      Paul, so sorry you are on the roller-coaster, but you are still fighting and for that we are all thankful!  I hope you get some good news and a plan forward on the 16th.  Good karma winging its way to you…

      • January 9, 2017 at 4:09 am
      casagrayson
      Participant

      Paul, so sorry you are on the roller-coaster, but you are still fighting and for that we are all thankful!  I hope you get some good news and a plan forward on the 16th.  Good karma winging its way to you…

      • January 9, 2017 at 4:09 am
      casagrayson
      Participant

      Paul, so sorry you are on the roller-coaster, but you are still fighting and for that we are all thankful!  I hope you get some good news and a plan forward on the 16th.  Good karma winging its way to you…

      • January 9, 2017 at 5:31 am
      snow white
      Participant

      Yet another relief today, so happy to hear from both you and Josh..  You are such a strong FIGHTER, man i hope if I am ever in a situation like you, I am half the fighter that you are.  i will be interested to hear your thoughs on Hamid, he is actually only about 30 minutes from where we live and I am considering trying to get my Dad in to see him.  if you need anything while you are in town, please let me know, I am more than happy to help anyway that I am able.Thank goodnesss you have such an awesome support team, that means the world.  Keep fighting!  We are here for you!

      xo Jen

      • January 9, 2017 at 5:31 am
      snow white
      Participant

      Yet another relief today, so happy to hear from both you and Josh..  You are such a strong FIGHTER, man i hope if I am ever in a situation like you, I am half the fighter that you are.  i will be interested to hear your thoughs on Hamid, he is actually only about 30 minutes from where we live and I am considering trying to get my Dad in to see him.  if you need anything while you are in town, please let me know, I am more than happy to help anyway that I am able.Thank goodnesss you have such an awesome support team, that means the world.  Keep fighting!  We are here for you!

      xo Jen

      • January 9, 2017 at 5:31 am
      snow white
      Participant

      Yet another relief today, so happy to hear from both you and Josh..  You are such a strong FIGHTER, man i hope if I am ever in a situation like you, I am half the fighter that you are.  i will be interested to hear your thoughs on Hamid, he is actually only about 30 minutes from where we live and I am considering trying to get my Dad in to see him.  if you need anything while you are in town, please let me know, I am more than happy to help anyway that I am able.Thank goodnesss you have such an awesome support team, that means the world.  Keep fighting!  We are here for you!

      xo Jen

      • January 9, 2017 at 1:51 pm
      momof4boys
      Participant
      Paul, you are praying for us? You are one cool dude thinking of us when we are all in turn praying for you. Stay strong, one day at a time.
      • January 9, 2017 at 1:51 pm
      momof4boys
      Participant
      Paul, you are praying for us? You are one cool dude thinking of us when we are all in turn praying for you. Stay strong, one day at a time.
      • January 9, 2017 at 1:51 pm
      momof4boys
      Participant
      Paul, you are praying for us? You are one cool dude thinking of us when we are all in turn praying for you. Stay strong, one day at a time.
      • January 9, 2017 at 3:49 pm
      jenny22
      Participant

      HI Paul- WOW…..so happy to see your post……and happy to hear you and your 10lbs of medical records are taking flight on the 16th. I am REEEEEEEEEEALLY hoping Dr. Hamid has some tricks up his sleeve.

      Thinking about you and hoping for some good news.

       

      Take care.

      jenny

      • January 9, 2017 at 3:49 pm
      jenny22
      Participant

      HI Paul- WOW…..so happy to see your post……and happy to hear you and your 10lbs of medical records are taking flight on the 16th. I am REEEEEEEEEEALLY hoping Dr. Hamid has some tricks up his sleeve.

      Thinking about you and hoping for some good news.

       

      Take care.

      jenny

      • January 9, 2017 at 3:49 pm
      jenny22
      Participant

      HI Paul- WOW…..so happy to see your post……and happy to hear you and your 10lbs of medical records are taking flight on the 16th. I am REEEEEEEEEEALLY hoping Dr. Hamid has some tricks up his sleeve.

      Thinking about you and hoping for some good news.

       

      Take care.

      jenny

      • January 9, 2017 at 6:50 pm
      Mat
      Participant

      Paul, good luck with the visit to Hamid.  I'll make a basic point since I don't know if you've sought a second opinion at another institution before–try to send as much in advance as possible (in addition to bringing it with you).  For scans, if not sent in advance, bring CDs (not just reports).  

      • January 9, 2017 at 6:50 pm
      Mat
      Participant

      Paul, good luck with the visit to Hamid.  I'll make a basic point since I don't know if you've sought a second opinion at another institution before–try to send as much in advance as possible (in addition to bringing it with you).  For scans, if not sent in advance, bring CDs (not just reports).  

      • January 9, 2017 at 6:50 pm
      Mat
      Participant

      Paul, good luck with the visit to Hamid.  I'll make a basic point since I don't know if you've sought a second opinion at another institution before–try to send as much in advance as possible (in addition to bringing it with you).  For scans, if not sent in advance, bring CDs (not just reports).  

      • January 9, 2017 at 11:08 pm
      tschmith
      Participant

      Prayers for both Paul and Josh.  i don't know what else to add, but I so admire and am inspired by your strength, knowledge, and determination.  Every step I take, I picture myself stepping on melanoma.  

      Looking forward to updates!

      Terrie

      • January 9, 2017 at 11:08 pm
      tschmith
      Participant

      Prayers for both Paul and Josh.  i don't know what else to add, but I so admire and am inspired by your strength, knowledge, and determination.  Every step I take, I picture myself stepping on melanoma.  

      Looking forward to updates!

      Terrie

      • January 9, 2017 at 11:08 pm
      tschmith
      Participant

      Prayers for both Paul and Josh.  i don't know what else to add, but I so admire and am inspired by your strength, knowledge, and determination.  Every step I take, I picture myself stepping on melanoma.  

      Looking forward to updates!

      Terrie

      • January 9, 2017 at 11:09 pm
      tschmith
      Participant

      Prayers for both Paul and Josh.  i don't know what else to add, but I so admire and am inspired by your strength, knowledge, and determination.  Every step I take, I picture myself stepping on melanoma.  

      Looking forward to updates!

      Terrie

      • January 9, 2017 at 11:09 pm
      tschmith
      Participant

      Prayers for both Paul and Josh.  i don't know what else to add, but I so admire and am inspired by your strength, knowledge, and determination.  Every step I take, I picture myself stepping on melanoma.  

      Looking forward to updates!

      Terrie

      • January 9, 2017 at 11:09 pm
      tschmith
      Participant

      Prayers for both Paul and Josh.  i don't know what else to add, but I so admire and am inspired by your strength, knowledge, and determination.  Every step I take, I picture myself stepping on melanoma.  

      Looking forward to updates!

      Terrie

        • January 9, 2017 at 11:11 pm
        tschmith
        Participant

        Sorry for posting twice…just did't think the first one was going to show up!

        • January 9, 2017 at 11:11 pm
        tschmith
        Participant

        Sorry for posting twice…just did't think the first one was going to show up!

        • January 9, 2017 at 11:11 pm
        tschmith
        Participant

        Sorry for posting twice…just did't think the first one was going to show up!

      • January 10, 2017 at 3:32 am
      Patrisa
      Participant

      Dear Paul,

      words can not express my admiration towards you, you are a true inspiration…

      I am so glad you are surrounded by your daughters and sisters and are willing to accept their help… It's easier for them if they can feel they can help and for you as well….

      Hope everything goes well with dr Hamid!

      Love,

      Patrisa

      • January 10, 2017 at 3:32 am
      Patrisa
      Participant

      Dear Paul,

      words can not express my admiration towards you, you are a true inspiration…

      I am so glad you are surrounded by your daughters and sisters and are willing to accept their help… It's easier for them if they can feel they can help and for you as well….

      Hope everything goes well with dr Hamid!

      Love,

      Patrisa

      • January 10, 2017 at 3:32 am
      Patrisa
      Participant

      Dear Paul,

      words can not express my admiration towards you, you are a true inspiration…

      I am so glad you are surrounded by your daughters and sisters and are willing to accept their help… It's easier for them if they can feel they can help and for you as well….

      Hope everything goes well with dr Hamid!

      Love,

      Patrisa

      • January 10, 2017 at 4:16 am
      _Paul_
      Participant

      Thanks for all the prayers, wishes, advice and humor everyone. Simply put you guys rock!

      I ended up back in the hospital this morning for pain. I spent a very uncomfortable night last night unable to get hold of my sister, daughter or clinic  (just bad planning,  phones not on, etc.). It turns out my spine is pretty much littered with mets.

      I have been asking my onc if we can do something about the more troublesome sub-q's.  He thinks T-VEC sounds appropriate ,  but he wants to confer with the TIL lead investigator, and getting them to talk is like herding cats.

      I am still sticking with the plan to see Hamid on Monday. I am going to ask about Epacadostat and mutation-targeted therapy. I am on a patient controlled Dilaudid drip now, and they are pretty good at pain control.

      – Paul

        • January 10, 2017 at 4:21 pm
        snow white
        Participant

        Darn it!!!!  i am so sorry you had such a rough night!  Your attitude is what gets you through all of this, I am currently working on mine and I am not even the one with Mel!  Hang in there my friend, looking forward to hearing what Hamid has to say.  

        xo Jen

        • January 10, 2017 at 4:21 pm
        snow white
        Participant

        Darn it!!!!  i am so sorry you had such a rough night!  Your attitude is what gets you through all of this, I am currently working on mine and I am not even the one with Mel!  Hang in there my friend, looking forward to hearing what Hamid has to say.  

        xo Jen

        • January 10, 2017 at 4:21 pm
        snow white
        Participant

        Darn it!!!!  i am so sorry you had such a rough night!  Your attitude is what gets you through all of this, I am currently working on mine and I am not even the one with Mel!  Hang in there my friend, looking forward to hearing what Hamid has to say.  

        xo Jen

        • January 11, 2017 at 1:57 am
        Bubbles
        Participant

        Sorry Punkin! You know I love me some intralesionals!! T-vec is one I would look at!  Hang in there. love, c

        • January 11, 2017 at 1:57 am
        Bubbles
        Participant

        Sorry Punkin! You know I love me some intralesionals!! T-vec is one I would look at!  Hang in there. love, c

        • January 11, 2017 at 1:57 am
        Bubbles
        Participant

        Sorry Punkin! You know I love me some intralesionals!! T-vec is one I would look at!  Hang in there. love, c

      • January 10, 2017 at 4:16 am
      _Paul_
      Participant

      Thanks for all the prayers, wishes, advice and humor everyone. Simply put you guys rock!

      I ended up back in the hospital this morning for pain. I spent a very uncomfortable night last night unable to get hold of my sister, daughter or clinic  (just bad planning,  phones not on, etc.). It turns out my spine is pretty much littered with mets.

      I have been asking my onc if we can do something about the more troublesome sub-q's.  He thinks T-VEC sounds appropriate ,  but he wants to confer with the TIL lead investigator, and getting them to talk is like herding cats.

      I am still sticking with the plan to see Hamid on Monday. I am going to ask about Epacadostat and mutation-targeted therapy. I am on a patient controlled Dilaudid drip now, and they are pretty good at pain control.

      – Paul

      • January 10, 2017 at 4:16 am
      _Paul_
      Participant

      Thanks for all the prayers, wishes, advice and humor everyone. Simply put you guys rock!

      I ended up back in the hospital this morning for pain. I spent a very uncomfortable night last night unable to get hold of my sister, daughter or clinic  (just bad planning,  phones not on, etc.). It turns out my spine is pretty much littered with mets.

      I have been asking my onc if we can do something about the more troublesome sub-q's.  He thinks T-VEC sounds appropriate ,  but he wants to confer with the TIL lead investigator, and getting them to talk is like herding cats.

      I am still sticking with the plan to see Hamid on Monday. I am going to ask about Epacadostat and mutation-targeted therapy. I am on a patient controlled Dilaudid drip now, and they are pretty good at pain control.

      – Paul

      • January 10, 2017 at 1:49 pm
      debwray
      Participant

      Hi Paul,

      You are due a lucky roll. Great to hear you have 5 star support. Truly wishing you the best possible outcome with Dr Hamid.

      Deb

      • January 10, 2017 at 1:49 pm
      debwray
      Participant

      Hi Paul,

      You are due a lucky roll. Great to hear you have 5 star support. Truly wishing you the best possible outcome with Dr Hamid.

      Deb

      • January 10, 2017 at 1:49 pm
      debwray
      Participant

      Hi Paul,

      You are due a lucky roll. Great to hear you have 5 star support. Truly wishing you the best possible outcome with Dr Hamid.

      Deb

      • January 10, 2017 at 5:53 pm
      maperny
      Participant

      Hi Paul,

      sorry about the damn pain.  My husband has been dealing with bone mets also.  Going to have to do MRI under sedation tomorrow.  We did see Drs yesterday and they were talking of getting the interventional radiologist to freeze a particularly big tumour on rib and then doing stereotatic radiation.  They said freezing should help pain first.  Not sure if there may be an option there for pain control for you, too.  

      We have to wait until we get Spine MRI back first though, Drs were looking at last MRI which was at 6cm but seemed stable back in October so we decided to wait given all other treatment he had in summer, now lots of pain.  He is taking dilaudid and also given a lidocaine patch now.  MRI got delayed from last week as he tried and couldn't lie down because of pain hence doing now with sedation.

      He'll also do brain MRI and CT of adomen/chest so we can see where we stand with everything else.  He continued with a Keytruda infusion yesterday but not sure if we will need to try something else once all results back.

      Saying lots of prayers for you and everyone else, looking forward to hearing options suggested by Dr Hamid. Will keep you posted on anything from our end.

      Keep on trucking!

      Maria

       

       

        • January 10, 2017 at 9:06 pm
        _Paul_
        Participant

        Maria,

        I can *so* relate to what you and your husband are going through. I was initially daunted when they told me it was a full spine MRI, without my pain pump (90 minutes). But my mets are nowhere as bad your husband's and I was able to make it through with prayer. If I pray for others it helps me to stop thinking about myself which is key.

        Having said that I am praying for you two.

        I will make sure to report back with the outcome of my visit with Dr. Hamid.

        – Paul

        • January 10, 2017 at 9:06 pm
        _Paul_
        Participant

        Maria,

        I can *so* relate to what you and your husband are going through. I was initially daunted when they told me it was a full spine MRI, without my pain pump (90 minutes). But my mets are nowhere as bad your husband's and I was able to make it through with prayer. If I pray for others it helps me to stop thinking about myself which is key.

        Having said that I am praying for you two.

        I will make sure to report back with the outcome of my visit with Dr. Hamid.

        – Paul

        • January 10, 2017 at 9:06 pm
        _Paul_
        Participant

        Maria,

        I can *so* relate to what you and your husband are going through. I was initially daunted when they told me it was a full spine MRI, without my pain pump (90 minutes). But my mets are nowhere as bad your husband's and I was able to make it through with prayer. If I pray for others it helps me to stop thinking about myself which is key.

        Having said that I am praying for you two.

        I will make sure to report back with the outcome of my visit with Dr. Hamid.

        – Paul

      • January 10, 2017 at 5:53 pm
      maperny
      Participant

      Hi Paul,

      sorry about the damn pain.  My husband has been dealing with bone mets also.  Going to have to do MRI under sedation tomorrow.  We did see Drs yesterday and they were talking of getting the interventional radiologist to freeze a particularly big tumour on rib and then doing stereotatic radiation.  They said freezing should help pain first.  Not sure if there may be an option there for pain control for you, too.  

      We have to wait until we get Spine MRI back first though, Drs were looking at last MRI which was at 6cm but seemed stable back in October so we decided to wait given all other treatment he had in summer, now lots of pain.  He is taking dilaudid and also given a lidocaine patch now.  MRI got delayed from last week as he tried and couldn't lie down because of pain hence doing now with sedation.

      He'll also do brain MRI and CT of adomen/chest so we can see where we stand with everything else.  He continued with a Keytruda infusion yesterday but not sure if we will need to try something else once all results back.

      Saying lots of prayers for you and everyone else, looking forward to hearing options suggested by Dr Hamid. Will keep you posted on anything from our end.

      Keep on trucking!

      Maria

       

       

      • January 10, 2017 at 5:53 pm
      maperny
      Participant

      Hi Paul,

      sorry about the damn pain.  My husband has been dealing with bone mets also.  Going to have to do MRI under sedation tomorrow.  We did see Drs yesterday and they were talking of getting the interventional radiologist to freeze a particularly big tumour on rib and then doing stereotatic radiation.  They said freezing should help pain first.  Not sure if there may be an option there for pain control for you, too.  

      We have to wait until we get Spine MRI back first though, Drs were looking at last MRI which was at 6cm but seemed stable back in October so we decided to wait given all other treatment he had in summer, now lots of pain.  He is taking dilaudid and also given a lidocaine patch now.  MRI got delayed from last week as he tried and couldn't lie down because of pain hence doing now with sedation.

      He'll also do brain MRI and CT of adomen/chest so we can see where we stand with everything else.  He continued with a Keytruda infusion yesterday but not sure if we will need to try something else once all results back.

      Saying lots of prayers for you and everyone else, looking forward to hearing options suggested by Dr Hamid. Will keep you posted on anything from our end.

      Keep on trucking!

      Maria

       

       

Viewing 47 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.