started removab in hallwang.

13

Comments

  • pokismom
    pokismom Member Posts: 153
    #42
    pete43lost_at_sea said:

    thanks Donna and my first hyperthermia
    Dear Donna,
    I am grateful for my attitude, its evolved as I have aged on our wonderful forum, this place where we care and share and aim to live well.

    immunotherapy in japan sounds interesting ........... tell me more when you can. I am having stem cells here, photo phoreece how ever they spell it. they take out 300cc blood and pass it under UV light i think. its something they do here, i have to read about it some more.

    so now I just had my first hyperthermia fullbody 39.3 for about an hour, I was pretty hot.
    it was about 15 hours after the my localised chemo, they want your core body temp raised within 24 hours chemo get the synergy.

    feeling really relaxed after hythermeria. I am diong the therapies I have researched and dreamed of. I am optimistic about my care here and my future. I will simply have the best future I have access to and that god is kind enough to deliver. of course I can help a little, but as I play the stage 4 game for real now I have offloaded the heavy duty medical care to my german medical team at the clinic.

    my legs and fingers are crossed for you also and for us all. Its a dam hard illness, but it is problem that can be solved, we can find a way to pevail, but god its had work.

    hugs,
    Pete

    Interesting
    I too had to give blood, think only 20cc, they divided into six and separated the white and red cells, then boost the lymphocytes and they put it back after chemotherapy. I always am curious about hyperthermia, I have one of those mats that heat up to 165 degrees, with infrared heat. But I cannot use it in conjunction with my chemo because of dehydration. I have a hard time staying hydrated as it is so I usually wait a couple of days after my chemo to use it, I sleep on it every nite after, I love how you feel on it, nothing like heat to make your body feel better.
    Thanks Pete
    Donna
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #43
    Thinking of You
    Prayers for a successful journey. You have been through so much and have informed many here. Maybe it's your time to write a book :) Just know that you have a lot of people rooting for you. So glad that they are taking such good care of you because you deserve it.

    Hugs! Kim
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #44
    Annabelle41415 said:

    Thinking of You
    Prayers for a successful journey. You have been through so much and have informed many here. Maybe it's your time to write a book :) Just know that you have a lot of people rooting for you. So glad that they are taking such good care of you because you deserve it.

    Hugs! Kim

    thanks kim
    its along way since the old reversal blues, or may i say reversal poos. ha ha!!!!!!!!!!

    hugs,
    Pete

    ps was up all night due to chemo constipation, remember the folfox express
  • steveandnat
    steveandnat Member Posts: 886
    #45
    pete43lost_at_sea said:

    thanks kim
    its along way since the old reversal blues, or may i say reversal poos. ha ha!!!!!!!!!!

    hugs,
    Pete

    ps was up all night due to chemo constipation, remember the folfox express

    Praying for you
    Pete I am praying for you everyday. You are a real inspiration in this crazy battle. I can relate (not right now though) to those awful chemo contipation pains. It's now what we need on top of everything else. Will be thinking about you today. JEff
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #46
    pete43lost_at_sea said:

    thanks kim
    its along way since the old reversal blues, or may i say reversal poos. ha ha!!!!!!!!!!

    hugs,
    Pete

    ps was up all night due to chemo constipation, remember the folfox express

    Hey Pete,
    Best of luck with

    Hey Pete,

    Best of luck with everything, I hope that you find a cure, or at least a way to slow down the beast...

    Best wishes, and take care,

    Cyn
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #47
    steveandnat said:

    Praying for you
    Pete I am praying for you everyday. You are a real inspiration in this crazy battle. I can relate (not right now though) to those awful chemo contipation pains. It's now what we need on top of everything else. Will be thinking about you today. JEff

    thanks jeff
    the prayers are appreciated, if gods listening, and I know he is, if he is smiling on me favourably this story will have a happy ending.

    this is my prayer, I am really sending out a positive vibe here, a few at the clinic have challenges, regardless we can live very well today.

    the constipations solved, nothing a long black coffee cannot fix.

    hugs,
    Pete
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #48
    Pete, i am holding you in a
    Pete, i am holding you in a healing light and praying as hard as I can.
    Hugs,
    Judy
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #49
    jjaj133 said:

    Pete, i am holding you in a
    Pete, i am holding you in a healing light and praying as hard as I can.
    Hugs,
    Judy

    thanks Judy and Cyn
    the black forest is white, the weather is changing, snow is coming, its all fog this morning.
    my prayer is for my spirit to stay positive with hope. the cure will take care of itself if I work on my health, my spirit and my attitude. Ok I will give the doctors a few pointers.

    cyn, thanks for the hipec stuff, I am getting a second hipec opinion here in 4 weeks after we see how removab, avastin, mitomycin and hyperthermia and chemo embalisation have worked. I would love to avoid the big chop if I can avoid it.

    judy the prayers are lovelly, but pray with a smile for us all. I do.

    Its possible to turn a challenging prognosis around, and regardless we all have to live well today, its all we have anyway.

    hugs,
    Pete
  • k44454445
    k44454445 Member Posts: 494
    #50
    i can not believe
    how you always stay upbeat! you are going thru some very heavy duty tx but you always are positive. i know there are several of us that draws strength from your posts. thank you. good luck the rest of this week. i pray for you several times a day.with that snow just grab a blanket & snuggle up!!!
    hugs
    judy
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #51
    k44454445 said:

    i can not believe
    how you always stay upbeat! you are going thru some very heavy duty tx but you always are positive. i know there are several of us that draws strength from your posts. thank you. good luck the rest of this week. i pray for you several times a day.with that snow just grab a blanket & snuggle up!!!
    hugs
    judy

    thanks judy
    the prayers are helping, maybe the positive attitude I have is a result of the love, care and support I get here and everywhere. Before cancer I never really asked, but now I am open to the kindnesses life puts before me.

    http://petertrayhurn.blogspot.de/2012/10/ursula-jacobs-is-top-oncologist-really.html

    the removab treatments here are pretty hard, I have put most the updates in my blog if anyone is contemplating this course of therapy.

    I will grab a blanket and snuggle up.

    hugs,
    Pete
  • Nana b
    Nana b Member Posts: 3,030 Member
    #52
    pete43lost_at_sea said:

    thanks judy
    the prayers are helping, maybe the positive attitude I have is a result of the love, care and support I get here and everywhere. Before cancer I never really asked, but now I am open to the kindnesses life puts before me.

    http://petertrayhurn.blogspot.de/2012/10/ursula-jacobs-is-top-oncologist-really.html

    the removab treatments here are pretty hard, I have put most the updates in my blog if anyone is contemplating this course of therapy.

    I will grab a blanket and snuggle up.

    hugs,
    Pete

    OMGosh.... I have been gone
    OMGosh.... I have been gone from this board for a couple months or maybe 3, what the heck happened?!?!??!

    I have missed a lot of your journey since I last commented to our CEA but up at the same time.

    Hope all works out for you! Big Hug Pete!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #53
    Nana b said:

    OMGosh.... I have been gone
    OMGosh.... I have been gone from this board for a couple months or maybe 3, what the heck happened?!?!??!

    I have missed a lot of your journey since I last commented to our CEA but up at the same time.

    Hope all works out for you! Big Hug Pete!

    thanks raquel
    i got some targets to knock of liver , lung and peritoneal, its on my blog.
    with a history of crc sweety, wheres theirs smoke their mets! i learnt that the hard way.
    the pet found them august, an agio ct august the liver suckers and now i am in germany getting the best care i can find. screw these few silly cells, they will go and i will stay.

    i hope your going well. my tip if they have not found any mets yet, do an angio ct, that worked for me.

    hugs,
    Pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #54
    from the pancake post ok maple syrup and bicarb
    its such a big question for example my case
    new
    Dear Marie and all
    how do you get good chemo to peritoneal mets? direct injection.
    so my removab use is offlabel, its like chemo in that it helps kill cancer cells and the side effects are supreme. it does not destroy your immune system like folfox etc, so I am playing the game of long term survival and i want acknowledge the compromise a short term high dose chemo maybe benefit some, but you see my MDR is 70%, that the multidrug resistance pathway in my tumour, so hardcore chemo well in my case why bother. being guided by the best science is all we can do and pray of course. after 6 month removab the express of my tumour biological markers can change considerably, so the suckers are slippery little devils to. I published all the greek test tumour results last december on my blog, goto blog search medical record and read the rgcc results about 4 documents.
    beating cancer with nutrition by thomas someone. its a concise simple read. it covers lots of the pathways. i have had my tumour pathways analysed dec11, my mistake was hammering the tumour with well targetted naturals and not going hardcore jan feb 12 when my escalating markers with clear scans.
    so now if i recover well enough from removab, then mitomycin, matiac d fraction and vit c in hyperthemia. the chemo is on a 24hour bottle, low dose to shutdown any circulating ctcs. this choice of chemo was guided by chemo sensitivity testing. why not use the most effective chemo for you tumour?
    I will copy this into my removab post for any further discussion . my point is our tumours are unique but they all have different pathways, which can be targetted.
    the point is our tumours all have common pathways which are uniquely expressed, just like we are unique, they exist in us, they are shaped by our environment, our ever changing environment, something as simple as deep breathing oxyganates our cellular metabolism and can encourage oxphos ADP not fermentation, but its very complex. read cancer as a metabolic disease for full details.
    hugs,
    pete
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #55
    pete43lost_at_sea said:

    from the pancake post ok maple syrup and bicarb
    its such a big question for example my case
    new
    Dear Marie and all
    how do you get good chemo to peritoneal mets? direct injection.
    so my removab use is offlabel, its like chemo in that it helps kill cancer cells and the side effects are supreme. it does not destroy your immune system like folfox etc, so I am playing the game of long term survival and i want acknowledge the compromise a short term high dose chemo maybe benefit some, but you see my MDR is 70%, that the multidrug resistance pathway in my tumour, so hardcore chemo well in my case why bother. being guided by the best science is all we can do and pray of course. after 6 month removab the express of my tumour biological markers can change considerably, so the suckers are slippery little devils to. I published all the greek test tumour results last december on my blog, goto blog search medical record and read the rgcc results about 4 documents.
    beating cancer with nutrition by thomas someone. its a concise simple read. it covers lots of the pathways. i have had my tumour pathways analysed dec11, my mistake was hammering the tumour with well targetted naturals and not going hardcore jan feb 12 when my escalating markers with clear scans.
    so now if i recover well enough from removab, then mitomycin, matiac d fraction and vit c in hyperthemia. the chemo is on a 24hour bottle, low dose to shutdown any circulating ctcs. this choice of chemo was guided by chemo sensitivity testing. why not use the most effective chemo for you tumour?
    I will copy this into my removab post for any further discussion . my point is our tumours are unique but they all have different pathways, which can be targetted.
    the point is our tumours all have common pathways which are uniquely expressed, just like we are unique, they exist in us, they are shaped by our environment, our ever changing environment, something as simple as deep breathing oxyganates our cellular metabolism and can encourage oxphos ADP not fermentation, but its very complex. read cancer as a metabolic disease for full details.
    hugs,
    pete

    Dear Pete
    My mention of "off label use" in the other post was not meant to be critical. You need to do whatever you and your docs are comfortable with.

    Hugs,

    Marie who loves kitties
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #56
    Lovekitties said:

    Dear Pete
    My mention of "off label use" in the other post was not meant to be critical. You need to do whatever you and your docs are comfortable with.

    Hugs,

    Marie who loves kitties

    thanks marie, your never critical, always supportive of us all
    off label is a god send it gives innovative onc the chance to test what they believe the most effacious treatments on willing patients. with peritoneal mets my choices well are limited.
    i think i have given the natural therapies a good run, but its clear if i want to get to 20000 posts here i better do something thats effective for my tumours.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #57
    final update from removab cea results
    strategically i can use removab again, its got a limited life span of effecivess, i have seen other stage4 back in the clinic with no response. so its almost a once off magic bullet, thats my impression. again the issue is delivery to the tumours, we goto get the mouse/rat antibodies to tag the tumour cells. i still suspect my request to do intraperitoneal as well was a valid request, that was ignored. but maybe the next series of removab shots planned for mid feb.

    it costs about 100K USD for the 2 months in the clinic for 3 removabs and many other therapies. but the best results i have seen sofar.

    pet and other scans coming soon, i will update this post for completeness.

    excerpt in email to clinic doctors, only patients can point out the subtlies of our results.

    just in case you missed it, my cea 14sep was 81, 17oct 1770, 31nov 39. i had removab 11oct. Been having about a 20 point each test month, so i expected 17oct to be 100 not 1770. A great example of your removab and infusion effectiveness and I suspect tumour die off. Note vogel was on 22oct so could not a factor in the 1770 score. But obviously vogel two treatments are included in the 39 score, and the other hallwang therapies. Its a great result so far.

    the full public email on the blog
    http://petertrayhurn.blogspot.com/2012/12/nestlehut-gentleman-and-two-chemo.html

    hugs,
    Pete
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #58
    pete43lost_at_sea said:

    final update from removab cea results
    strategically i can use removab again, its got a limited life span of effecivess, i have seen other stage4 back in the clinic with no response. so its almost a once off magic bullet, thats my impression. again the issue is delivery to the tumours, we goto get the mouse/rat antibodies to tag the tumour cells. i still suspect my request to do intraperitoneal as well was a valid request, that was ignored. but maybe the next series of removab shots planned for mid feb.

    it costs about 100K USD for the 2 months in the clinic for 3 removabs and many other therapies. but the best results i have seen sofar.

    pet and other scans coming soon, i will update this post for completeness.

    excerpt in email to clinic doctors, only patients can point out the subtlies of our results.

    just in case you missed it, my cea 14sep was 81, 17oct 1770, 31nov 39. i had removab 11oct. Been having about a 20 point each test month, so i expected 17oct to be 100 not 1770. A great example of your removab and infusion effectiveness and I suspect tumour die off. Note vogel was on 22oct so could not a factor in the 1770 score. But obviously vogel two treatments are included in the 39 score, and the other hallwang therapies. Its a great result so far.

    the full public email on the blog
    http://petertrayhurn.blogspot.com/2012/12/nestlehut-gentleman-and-two-chemo.html

    hugs,
    Pete

    blip?
    17 Oct looks like a blip in the CEA data to me, doubling rates greater than 20-30 days look highly suspicious. Total miss or somebody's transcription error like 170, fat fingered with a double 7?
  • janie1
    janie1 Member Posts: 753 Member
    #59
    tanstaafl said:

    blip?
    17 Oct looks like a blip in the CEA data to me, doubling rates greater than 20-30 days look highly suspicious. Total miss or somebody's transcription error like 170, fat fingered with a double 7?

    Pete
    You mentioned above - Mitomycin.

    Just wondered what you know about it. What exactly does it do?

    I had an infusion of it put in my Hai pump for liver mets. (It's not the routine drug that is used with the pump.)

    Hoping it does something.

    Thanks.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #60
    janie1 said:

    Pete
    You mentioned above - Mitomycin.

    Just wondered what you know about it. What exactly does it do?

    I had an infusion of it put in my Hai pump for liver mets. (It's not the routine drug that is used with the pump.)

    Hoping it does something.

    Thanks.

    janie

    sorry i never saw your question, mitomycin is a cheap old chemo, really effective for knocking out my circulating tumour cells per my chemo sensitivity tests.

    so had it twice, to stop any mets coming back somewhere new.

    hugs,

    pete

  • tachilders
    tachilders Member Posts: 313
    #61
    pete43lost_at_sea said:

    janie

    sorry i never saw your question, mitomycin is a cheap old chemo, really effective for knocking out my circulating tumour cells per my chemo sensitivity tests.

    so had it twice, to stop any mets coming back somewhere new.

    hugs,

    pete

    If it makes you feel any

    If it makes you feel any better, Avastin is not chemo, but rather another monoclonal Ab, si its closer to Removab than chemo....

    Tedd

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