JoeMetz - Update

2

Comments

  • renw
    renw Member Posts: 282 Member
    #22
    tanstaafl said:

    these extras

    Thanks for all your searching, skills, and sharing Ren.   I would be interested to know how these doctors feel about operative/perioperative adjuncts like cimetidine, celecoxib, menatetrenone-4 (human K2) and ascorbate for advanced liver procedures, some of the things that seem to be crucial to my wife success in her cancer journey so far.

    Of course they are varying degrees of accepted, cimetidine and celecoxib being already accepted in surgery and VK known for helping some kinds of liver disease.  

    I had to fight to get

    I had to fight to get prescriptions for things like metformin, cimetidine and celebrex in Australia, though celebrex was easier than metformin as I had to argue less.

    In germany, saw 2 doctors thus far and both recommend the use of all three. In fact was told to up my doses on some of these.

    Very different approach, though I am not exactly going through the conventional cancer treatment centers in Germany, so this could be a factor.
  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    #23
    Sorry to hear

    Sorry to hear of your struggles, but as I scrolled down, there are many good options out there. That gives us hope!!!

    Judy

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #24
    Joe

    Joe,

    I hope and pray you get relief from your current treatment.  You are such a positive and strong man. 

     

    Aloha,

    Kathleen

  • geotina
    geotina Member Posts: 2,111 Member
    #25
    Joe:

    Wow, you really have had a rough stretch.  Hang in there.  George never had bone mets so sorry, no help there.  I sure hope the docs and your current course of treatment can once again get things under control.  I'm sorry, getting those kicks in the gut are so very tough to endure.  Stay postive.

    Take care- Tina

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #26
    geotina said:

    Joe:

    Wow, you really have had a rough stretch.  Hang in there.  George never had bone mets so sorry, no help there.  I sure hope the docs and your current course of treatment can once again get things under control.  I'm sorry, getting those kicks in the gut are so very tough to endure.  Stay postive.

    Take care- Tina

    Go Joe!

    Stay strong and focused. So sorry to hear about the progression. Good luck pursuing different options!

    - Karin

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #27
    lilacbrroller said:

    Go Joe!

    Stay strong and focused. So sorry to hear about the progression. Good luck pursuing different options!

    - Karin

     
    Oh, Joe, i am sorry that

     

    Oh, Joe, i am sorry that you are going through all of this. It sounds like you have an agreesive team. Researching the options is both exhausting and hopeful. It is great to see others here already providing info worthy of conversation with your docs.

    Please know that you are in my heart and prayer. Hang In!

    Cathleen Mary

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #28
    renw said:

    I had to fight to get

    I had to fight to get prescriptions for things like metformin, cimetidine and celebrex in Australia, though celebrex was easier than metformin as I had to argue less.

    In germany, saw 2 doctors thus far and both recommend the use of all three. In fact was told to up my doses on some of these.

    Very different approach, though I am not exactly going through the conventional cancer treatment centers in Germany, so this could be a factor.
    also not standard

    She also did her normal UFT (5FU) - LV up to 24 hours before and after her 2nd, retroperitoneal surgery for the para aortic LN cluster to prevent regrowth and spread.   Not sure how close in and what liver surgery risks could be acceptable.     First surgery she was perioperative with IV C, big cimetidine, coQ10, vitamins D3 and K2. Both surgeries she had tapered off some of the other potential blood thinning supplements the week before, although I know some famous surgeons have used either fish oil or vit E for their standard surgeries.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #29
    renw said:

    If you go for TACE, have your

    If you go for TACE, have your radiologists look up studies on immunochemoembolization done in Hamburg and Brno. They report better outcomes and all it involves is adding a little GC-MSF into the chemo mix to stimulate macrofages inside the embolized liver. Also if using irinotecan as one of the chemo agents, I would make sure they use the irinotecan DC microbeads. Good luck.

    Wow! Thanks for info, Ren.
    Wow! Thanks for info, Ren.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #30
    Hi Joe...im sorry to hear
    Hi Joe...im sorry to hear youve been having a tough time. I hope the treatment goes well...will be watching for an update. You are always so positive ...kind ...helpful- please keep us updated and get some of that support back.
    Ren...thanks for sticking around and sharing your knowledge/research with us.
  • scared99
    scared99 Member Posts: 72
    #31
    Hey Joe,   I am sorry you are

    Hey Joe,   I am sorry you are dealing with these bone mets.   My mom was diagnosed stage 4 colon cancer almost a year ago.   Since April of last year she thought she threw her back out.  It turned out the reason she was having such pain was because she had a sacral bone met.   She was diagnosed with her colon cancer from the bone met.   She was in really rough shape last Summer.  Could not move around, infections left and right I really did not think she would make it a year.    She had radiation last summer for the bone met and has been on chemo since then.  She did not drive a car since her diagnosis and just the other day called me to tell me she went for a drive to the local mall... which shocked me !    As of today she is finishing up her chemo and going for scans next week.   She is doing 100 percent better than she did last summer and the doctor has been nothing but optimistic.  If you look on line you will find they have come a great deal in managing and treating bone mets. 

     

    The biggest issue was the pain from the bone met.  They have treated her so far with Fetalyn patches and that has kept the pain at bay.  Her colon cancer did not take a normal path.  The larges tumor she has is in her sacrum.   The doctor has been more concerned with trying to eliminate and shrink as much of the soft tissue tumors as possible. 

  • scared99
    scared99 Member Posts: 72
    #32
    Hey Joe,   I am sorry you are

    Hey Joe,   I am sorry you are dealing with these bone mets.   My mom was diagnosed stage 4 colon cancer almost a year ago.   Since April of last year she thought she threw her back out.  It turned out the reason she was having such pain was because she had a sacral bone met.   She was diagnosed with her colon cancer from the bone met.   She was in really rough shape last Summer.  Could not move around, infections left and right I really did not think she would make it a year.    She had radiation last summer for the bone met and has been on chemo since then.  She did not drive a car since her diagnosis and just the other day called me to tell me she went for a drive to the local mall... which shocked me !    As of today she is finishing up her chemo and going for scans next week.   She is doing 100 percent better than she did last summer and the doctor has been nothing but optimistic.  If you look on line you will find they have come a great deal in managing and treating bone mets. 

     

    The biggest issue was the pain from the bone met.  They have treated her so far with Fetalyn patches and that has kept the pain at bay.  Her colon cancer did not take a normal path.  The larges tumor she has is in her sacrum.   The doctor has been more concerned with trying to eliminate and shrink as much of the soft tissue tumors as possible. 

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #33
    Joe...

    wishing you good results with the radiation treatments!  You are my "go-to" guy with your positive vibes and smiling face!  Take care and you are in my thoughts!

    Also, thanks renw for the post about ALPPS.  My husband has numerous liver leisons and liver surgery is not possible at this time.  This is something I need to look in to and learn more about.

    Best to all,

    Ellen

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    #34
    Joe
    So sorry for your fight, you don't seem to get a break! Please keep us updated with your treatment. Where is that CANCER cure? So frustrating.
    Sandy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #35
    Bes of Luck, Joe!

    Rare for bone, but it does happen.  Most of the cases I've known the cancer was in the sacral area, which is difficult to treat.

    Hoping that the radiation eases the hip and bone pain for you...you've got an entire room pulling for you!

  • Luckygirl2
    Luckygirl2 Member Posts: 308
    #36
    Many hugs and prayers

    Thinking of you and sending prayers your way.

  • joemetz
    joemetz Member Posts: 493
    #37
    a few days...

    It's amazing what a few days can bring... and the positive encouragement from all of you here in the CSN Fam!

    thanks so much for your positive messages and well wishes. It's so encouraging and uplifting.

    I had my 6th of 10 radiation treatments today... and it's nice to be on the "almost done" side of this treatment. Radiation machines are very intimidating, and depressing, so I lay there and visualize of the last treatment and think about the nice card I am going to get for the two ladies who have giving me the laser pointed sunburn to my butt & hip. 

    Met with oncologist today and set the plan for the next few months.

    May 28th... PET scan to see how Y90 did on the liver mets and to review the bone mets in left hip.

    Today, X-rays of right hip and femur to see if there are any bone mets in that side. Most likely the pain in the right side is from "overcompenstaion" when i walk with a limp favoring pressure on the opposite hip of the hip with the bone mets (did I loose you yet?... :-) )   They also did complete blood work.

    the plan going forward, is to finish the radation treatments on the 13th. Begin weekly shots of Xgeva to help to strengthen the bones. Then, beginning first week of June begin Avastin, 5fu & Irinotecan (aka: Campstosar, aka: CPT11) which will go for 10 weeks.

    I am unfamilair with Irinotecan (camptosar/CPT11)... let me know.  

    it's nice to have a PLAN. But, the good thing... is that the PET scan will be May 28th.... and if there's remarkable change since having y90 & radiation... then we change the plan cuz that would be my miracle.

    again... thanks to everyone here on this CSN board. You are awesome.  Let's all win this battle.

    #5words2cancer  http://www.ihadcancer.com/5words2cancer  check it out!

    my 5 words for today:  You Picked The Wrong Dude!

    Or "Cancer, get the eff out of my life"  (okay... that was 8 words... but I mean it)

    hugs

     

    Joe

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #38
    joemetz said:

    a few days...

    It's amazing what a few days can bring... and the positive encouragement from all of you here in the CSN Fam!

    thanks so much for your positive messages and well wishes. It's so encouraging and uplifting.

    I had my 6th of 10 radiation treatments today... and it's nice to be on the "almost done" side of this treatment. Radiation machines are very intimidating, and depressing, so I lay there and visualize of the last treatment and think about the nice card I am going to get for the two ladies who have giving me the laser pointed sunburn to my butt & hip. 

    Met with oncologist today and set the plan for the next few months.

    May 28th... PET scan to see how Y90 did on the liver mets and to review the bone mets in left hip.

    Today, X-rays of right hip and femur to see if there are any bone mets in that side. Most likely the pain in the right side is from "overcompenstaion" when i walk with a limp favoring pressure on the opposite hip of the hip with the bone mets (did I loose you yet?... :-) )   They also did complete blood work.

    the plan going forward, is to finish the radation treatments on the 13th. Begin weekly shots of Xgeva to help to strengthen the bones. Then, beginning first week of June begin Avastin, 5fu & Irinotecan (aka: Campstosar, aka: CPT11) which will go for 10 weeks.

    I am unfamilair with Irinotecan (camptosar/CPT11)... let me know.  

    it's nice to have a PLAN. But, the good thing... is that the PET scan will be May 28th.... and if there's remarkable change since having y90 & radiation... then we change the plan cuz that would be my miracle.

    again... thanks to everyone here on this CSN board. You are awesome.  Let's all win this battle.

    #5words2cancer  http://www.ihadcancer.com/5words2cancer  check it out!

    my 5 words for today:  You Picked The Wrong Dude!

    Or "Cancer, get the eff out of my life"  (okay... that was 8 words... but I mean it)

    hugs

     

    Joe

     

    Hi Joe. Folfiri has been
    Hi Joe. Folfiri has been Steve's only cocktail, so far. Has tolerated it really well. I dread the day he switches to Folfox. The neuropathy will likely affect his ability to play the guitar. (Which will affect his mood). His main complaint is fatigue on the day following disconnection. Has had no nausea, diarrhea or constipation. Has not worked since diagnosis but otherwise lives a very active life.

    Good luck
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #39
    joemetz said:

    a few days...

    It's amazing what a few days can bring... and the positive encouragement from all of you here in the CSN Fam!

    thanks so much for your positive messages and well wishes. It's so encouraging and uplifting.

    I had my 6th of 10 radiation treatments today... and it's nice to be on the "almost done" side of this treatment. Radiation machines are very intimidating, and depressing, so I lay there and visualize of the last treatment and think about the nice card I am going to get for the two ladies who have giving me the laser pointed sunburn to my butt & hip. 

    Met with oncologist today and set the plan for the next few months.

    May 28th... PET scan to see how Y90 did on the liver mets and to review the bone mets in left hip.

    Today, X-rays of right hip and femur to see if there are any bone mets in that side. Most likely the pain in the right side is from "overcompenstaion" when i walk with a limp favoring pressure on the opposite hip of the hip with the bone mets (did I loose you yet?... :-) )   They also did complete blood work.

    the plan going forward, is to finish the radation treatments on the 13th. Begin weekly shots of Xgeva to help to strengthen the bones. Then, beginning first week of June begin Avastin, 5fu & Irinotecan (aka: Campstosar, aka: CPT11) which will go for 10 weeks.

    I am unfamilair with Irinotecan (camptosar/CPT11)... let me know.  

    it's nice to have a PLAN. But, the good thing... is that the PET scan will be May 28th.... and if there's remarkable change since having y90 & radiation... then we change the plan cuz that would be my miracle.

    again... thanks to everyone here on this CSN board. You are awesome.  Let's all win this battle.

    #5words2cancer  http://www.ihadcancer.com/5words2cancer  check it out!

    my 5 words for today:  You Picked The Wrong Dude!

    Or "Cancer, get the eff out of my life"  (okay... that was 8 words... but I mean it)

    hugs

     

    Joe

     

    Hey Joe

    I just got off of Irinotecan, diarhea happens, make sure immodium is on hand, use it as soon as it starts, and if continues another two hours later, and so on and so on, ask your onc, it's pretty standard.  I lost 20 pounds on it, 15 in first month, so be careful, don't need to be losing weight at this juncture.

    If you have too much diarhea make sure you contact onc to get medication to control it.  Also low white blood cell count a possibility, I had to get Nulesta (spelled wrong probably) after 3rd time due to low white blood cell count, when that happens you get Nulesta 24 hours after every Irinotecan, mine was every two weeks, everyone is different.  I also lost my hair on it, within 3 weeks, some people thin, some people lose.  Mine went to Locks of Love, had a "Hair Today, Gone Tomorrow" party when it came out in clumps when I put a brush to my hair.

    Other then that, it's been pretty good, sure shrunk the tumors along with the Erbitux for me. Oh lost most eyebrows (kept eyelashes for most part) armpit hair and um, other places.

    Hugs to ya,

    Winter Marie

  • traci43
    traci43 Member Posts: 773 Member
    #40
    cancer sucks

    Joe - So sorry to hear about your trials.  You are a stong and giving person, I hope and pray for you that you can find a way to stop or at least slow this disease.  Traci

  • joemetz
    joemetz Member Posts: 493
    #41
    herdizziness said:

    Hey Joe

    I just got off of Irinotecan, diarhea happens, make sure immodium is on hand, use it as soon as it starts, and if continues another two hours later, and so on and so on, ask your onc, it's pretty standard.  I lost 20 pounds on it, 15 in first month, so be careful, don't need to be losing weight at this juncture.

    If you have too much diarhea make sure you contact onc to get medication to control it.  Also low white blood cell count a possibility, I had to get Nulesta (spelled wrong probably) after 3rd time due to low white blood cell count, when that happens you get Nulesta 24 hours after every Irinotecan, mine was every two weeks, everyone is different.  I also lost my hair on it, within 3 weeks, some people thin, some people lose.  Mine went to Locks of Love, had a "Hair Today, Gone Tomorrow" party when it came out in clumps when I put a brush to my hair.

    Other then that, it's been pretty good, sure shrunk the tumors along with the Erbitux for me. Oh lost most eyebrows (kept eyelashes for most part) armpit hair and um, other places.

    Hugs to ya,

    Winter Marie

    Hair

    thanks for the smile about the hair.

    in all my treatments... i never have "lost it all"  it has thinned out, so I went to the butch hair cut... milatary style. but, i never lost all my hair.

    and the "umm other places"... some people pay big money for that?  oh wait... this crap is Big Money!

     

    hugs!

     

Discussion Boards