› Forums › General Melanoma Community › My Week at MDA
- This topic has 57 replies, 7 voices, and was last updated 8 years, 11 months ago by
Kimba67.
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- June 30, 2016 at 3:49 am
HI All-
So things are took off fast this week!!! Been here in Houston since Sunday and have last procedure-leukaphresis tomorrow morning. They say cells should be ready first week of September.
I had 2 sub-q's removed by Dr. Wargo removed on Monday for potential future TIL Treatment. She's awesome…love her and her PA Liz.
Met with research people on trials. Did all the screening, scans etc… scan wasn't great. Long & short of it was by my guess I have 7-12 tumors in lung, liver, pancreas and in abdominal area. Now that big tumor(s) are gone I think largest tumor was 2.4cm x1.6cm. They were mostly in the 1cm range. I didn't read it…too overwhelming for me. Dr. Diab said though there are a fair amount of tumors; this isn't an extremely large tumor load….and to be optimistic because he is. I guess I was more hopeful that the surgery removed a lot. Some grew a bit while others stayed the same. Apparently some smaller spots not picked up on scan almost 2 months ago are now in that 5mm range. Either way…it sucks.
Dr. Diab is great and gave me a detailed rundown on Adoptive Cell Therapy. Honestly, everyone at MDA is very kind. I know some people think they're overrated. So far I've had good experience. I will start ipi back home in Chicago on Friday. Dr. Diab was going to discuss with Dr. Davies at MDA (my primary onc) and my local oncologist the possibilty of adding some abraxene or dacabarzine. The concern is that while I'm doing gap treatment, if I get colitis or other adverse side effect….I can be excluded from the modfied T Cell trial. It seems counteractive but he has science showing benefit….CELESTE????? Either way, ipi on Friday and probably looking at 2 doses before starting washout for trial. Is 2 doses enough to get a response? This is the scary part…the gap between growing cells and getting to treatment phase.
Still going crazy but have a plan….ang fighting to be optimistic.It's still so surreal how things just went haywire on me. I guess with all the years of just having a sub-q here there was a blessing; I just didn;t see it.
Be Well!!!
Josh
- Replies
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- June 30, 2016 at 1:36 pm
Hey Joshie! With the spam blockers, I will probably have to respond piece meal…but here we go.
Ipi with dacarbazine:
With the exception of this Japanese study (which was stopped due to side effects) from 2015: http://www.ncbi.nlm.nih.gov/pubmed/26407818
…most ipi/dacarbazine combo's harken back to the original 2011 studies which were done to determine the eficacy of ipi….where ipi with dacarbazine was compared to dacarbazine alone or dacarbazine with placebo. Not surprisingly…the folks that got ipi did better. Proving not that ipi plus dacarbazine was better than plain ipi….but just that ipi was a better treatment than dacarbazine. http://meetinglibrary.asco.org/content/80592-102
There have been some updates from that same study…put out in 2015…that note that sure enough….folks who got the ipi/dacarbazine combo have survived longer than the folks who got only dacarbazine.
Here is a quote from an ebook that I can't get you the link to: "In patients with melanoma, ipi plus dacarbazine had a significantly improved overall survival compared to dacarbazine alone (11.2 vs 9.1 months); however, because there was no ipi-alone arm, it is unclear whether there was any incremental benefit for the addition of chemotherapy (Robert et al 2011). Similarly, in patients with melanoma treated with ipi alone or in combo with dacarbazine or caboplatin/paclitaxel, there was no evident improvement in response (29.4% with ipi alone, 27.8% with ipi/dacarbazine, 11.1% with ipi/carboplatin/paclitaxel) (Weber, Hamid, Amin et al. 2013)."
So….it is hard for me to see how adding dacarbazine to your ipi treatment would be helpful. You might just be sicker while on it. More coming….
c
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- June 30, 2016 at 1:36 pm
Hey Joshie! With the spam blockers, I will probably have to respond piece meal…but here we go.
Ipi with dacarbazine:
With the exception of this Japanese study (which was stopped due to side effects) from 2015: http://www.ncbi.nlm.nih.gov/pubmed/26407818
…most ipi/dacarbazine combo's harken back to the original 2011 studies which were done to determine the eficacy of ipi….where ipi with dacarbazine was compared to dacarbazine alone or dacarbazine with placebo. Not surprisingly…the folks that got ipi did better. Proving not that ipi plus dacarbazine was better than plain ipi….but just that ipi was a better treatment than dacarbazine. http://meetinglibrary.asco.org/content/80592-102
There have been some updates from that same study…put out in 2015…that note that sure enough….folks who got the ipi/dacarbazine combo have survived longer than the folks who got only dacarbazine.
Here is a quote from an ebook that I can't get you the link to: "In patients with melanoma, ipi plus dacarbazine had a significantly improved overall survival compared to dacarbazine alone (11.2 vs 9.1 months); however, because there was no ipi-alone arm, it is unclear whether there was any incremental benefit for the addition of chemotherapy (Robert et al 2011). Similarly, in patients with melanoma treated with ipi alone or in combo with dacarbazine or caboplatin/paclitaxel, there was no evident improvement in response (29.4% with ipi alone, 27.8% with ipi/dacarbazine, 11.1% with ipi/carboplatin/paclitaxel) (Weber, Hamid, Amin et al. 2013)."
So….it is hard for me to see how adding dacarbazine to your ipi treatment would be helpful. You might just be sicker while on it. More coming….
c
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- June 30, 2016 at 1:36 pm
Hey Joshie! With the spam blockers, I will probably have to respond piece meal…but here we go.
Ipi with dacarbazine:
With the exception of this Japanese study (which was stopped due to side effects) from 2015: http://www.ncbi.nlm.nih.gov/pubmed/26407818
…most ipi/dacarbazine combo's harken back to the original 2011 studies which were done to determine the eficacy of ipi….where ipi with dacarbazine was compared to dacarbazine alone or dacarbazine with placebo. Not surprisingly…the folks that got ipi did better. Proving not that ipi plus dacarbazine was better than plain ipi….but just that ipi was a better treatment than dacarbazine. http://meetinglibrary.asco.org/content/80592-102
There have been some updates from that same study…put out in 2015…that note that sure enough….folks who got the ipi/dacarbazine combo have survived longer than the folks who got only dacarbazine.
Here is a quote from an ebook that I can't get you the link to: "In patients with melanoma, ipi plus dacarbazine had a significantly improved overall survival compared to dacarbazine alone (11.2 vs 9.1 months); however, because there was no ipi-alone arm, it is unclear whether there was any incremental benefit for the addition of chemotherapy (Robert et al 2011). Similarly, in patients with melanoma treated with ipi alone or in combo with dacarbazine or caboplatin/paclitaxel, there was no evident improvement in response (29.4% with ipi alone, 27.8% with ipi/dacarbazine, 11.1% with ipi/carboplatin/paclitaxel) (Weber, Hamid, Amin et al. 2013)."
So….it is hard for me to see how adding dacarbazine to your ipi treatment would be helpful. You might just be sicker while on it. More coming….
c
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- June 30, 2016 at 2:16 pm
Regarding Abraxane (understand that this is the same thing as: nab-p, nab-paclitaxel, paclitaxel):
You can see that ipi combined with paclitaxel didn't do so well in the quote from the Weber, Hamid study noted above. However, there is also this: https://www.youtube.com/watch?v=qS1vhR5qgxs&feature=em-share_video_user
In this utube video, go to the 10:12 mark and you will see a slide that compares dacarbazine to abraxane in melanoma patients in which the PFS was noted to be 4.8 months with paclitaxel vs 2.5 months with dacarbazine.
Now…there is also this: https://clinicaltrials.gov/ct2/show/NCT01827111
This is a study (started in 2013) being run by Diab at MDA where melanoma patients are being given ipi plus abraxane but I can find absolutely no results what so ever!!! I would be asking the dude what is going on with these patients????!!!!! He should be able to tell you what kind of results and side effects he is actually seeing in patients he has had enrolled for about three years now!!!!!
Bottom line: Darabazine makes most quite sick like standard old school chemo. Abraxane causes a fair amount of folks neuropathies…though many get better once treatment is stopped.
Unless, Diab is willing to share some considerable light….I'm not sure that adding either abraxane or dacarbazine to your ipi treatments would be terribly beneficial.
Why wouldn't ipi/nivo be a better option? It basically has the same risk of side effects as these potential combo's because we know that ipi is the bad boy of side effects no matter what we put it with. I realize you've taken both ipi and nivo singly….but that combo is clearly more effective for most compared to the combo's you are considering…and there are those for whom the combo worked when individual treatment did not….at least just til you start the trial???? c
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- June 30, 2016 at 7:46 pm
Celeste-
Just finished leukaphresis. Wasn't too bad of procedure. First, thank you as always…wealth of info!! I also should have mentioned that the reason he said add dacrabrazine was he felt it helped with controlling high grade side effects particularly colitis. His concern is that ipi can give me side effects that would get me out of trial. We're just moving forward now with ipi.
I also asked about ipi/nivo. Every once I spoke to feels better to leave that because of side effects and limiting trials in future. I guess thought is better left in back pocket. These are such tough decisions to make…I hate it but love you for always being there!!!
Josh
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- June 30, 2016 at 7:46 pm
Celeste-
Just finished leukaphresis. Wasn't too bad of procedure. First, thank you as always…wealth of info!! I also should have mentioned that the reason he said add dacrabrazine was he felt it helped with controlling high grade side effects particularly colitis. His concern is that ipi can give me side effects that would get me out of trial. We're just moving forward now with ipi.
I also asked about ipi/nivo. Every once I spoke to feels better to leave that because of side effects and limiting trials in future. I guess thought is better left in back pocket. These are such tough decisions to make…I hate it but love you for always being there!!!
Josh
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- June 30, 2016 at 8:32 pm
OK! Good enough for me, the docs there should certainly know more about all this than I do!!! Glad the leukophoresis went well and you are done with that!!!! Are you heading home now? Hope so and hope you can rest up and get ready to rumble in September!!! love, c
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- June 30, 2016 at 8:32 pm
OK! Good enough for me, the docs there should certainly know more about all this than I do!!! Glad the leukophoresis went well and you are done with that!!!! Are you heading home now? Hope so and hope you can rest up and get ready to rumble in September!!! love, c
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- June 30, 2016 at 8:32 pm
OK! Good enough for me, the docs there should certainly know more about all this than I do!!! Glad the leukophoresis went well and you are done with that!!!! Are you heading home now? Hope so and hope you can rest up and get ready to rumble in September!!! love, c
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- June 30, 2016 at 7:46 pm
Celeste-
Just finished leukaphresis. Wasn't too bad of procedure. First, thank you as always…wealth of info!! I also should have mentioned that the reason he said add dacrabrazine was he felt it helped with controlling high grade side effects particularly colitis. His concern is that ipi can give me side effects that would get me out of trial. We're just moving forward now with ipi.
I also asked about ipi/nivo. Every once I spoke to feels better to leave that because of side effects and limiting trials in future. I guess thought is better left in back pocket. These are such tough decisions to make…I hate it but love you for always being there!!!
Josh
-
- June 30, 2016 at 2:16 pm
Regarding Abraxane (understand that this is the same thing as: nab-p, nab-paclitaxel, paclitaxel):
You can see that ipi combined with paclitaxel didn't do so well in the quote from the Weber, Hamid study noted above. However, there is also this: https://www.youtube.com/watch?v=qS1vhR5qgxs&feature=em-share_video_user
In this utube video, go to the 10:12 mark and you will see a slide that compares dacarbazine to abraxane in melanoma patients in which the PFS was noted to be 4.8 months with paclitaxel vs 2.5 months with dacarbazine.
Now…there is also this: https://clinicaltrials.gov/ct2/show/NCT01827111
This is a study (started in 2013) being run by Diab at MDA where melanoma patients are being given ipi plus abraxane but I can find absolutely no results what so ever!!! I would be asking the dude what is going on with these patients????!!!!! He should be able to tell you what kind of results and side effects he is actually seeing in patients he has had enrolled for about three years now!!!!!
Bottom line: Darabazine makes most quite sick like standard old school chemo. Abraxane causes a fair amount of folks neuropathies…though many get better once treatment is stopped.
Unless, Diab is willing to share some considerable light….I'm not sure that adding either abraxane or dacarbazine to your ipi treatments would be terribly beneficial.
Why wouldn't ipi/nivo be a better option? It basically has the same risk of side effects as these potential combo's because we know that ipi is the bad boy of side effects no matter what we put it with. I realize you've taken both ipi and nivo singly….but that combo is clearly more effective for most compared to the combo's you are considering…and there are those for whom the combo worked when individual treatment did not….at least just til you start the trial???? c
-
- June 30, 2016 at 2:16 pm
Regarding Abraxane (understand that this is the same thing as: nab-p, nab-paclitaxel, paclitaxel):
You can see that ipi combined with paclitaxel didn't do so well in the quote from the Weber, Hamid study noted above. However, there is also this: https://www.youtube.com/watch?v=qS1vhR5qgxs&feature=em-share_video_user
In this utube video, go to the 10:12 mark and you will see a slide that compares dacarbazine to abraxane in melanoma patients in which the PFS was noted to be 4.8 months with paclitaxel vs 2.5 months with dacarbazine.
Now…there is also this: https://clinicaltrials.gov/ct2/show/NCT01827111
This is a study (started in 2013) being run by Diab at MDA where melanoma patients are being given ipi plus abraxane but I can find absolutely no results what so ever!!! I would be asking the dude what is going on with these patients????!!!!! He should be able to tell you what kind of results and side effects he is actually seeing in patients he has had enrolled for about three years now!!!!!
Bottom line: Darabazine makes most quite sick like standard old school chemo. Abraxane causes a fair amount of folks neuropathies…though many get better once treatment is stopped.
Unless, Diab is willing to share some considerable light….I'm not sure that adding either abraxane or dacarbazine to your ipi treatments would be terribly beneficial.
Why wouldn't ipi/nivo be a better option? It basically has the same risk of side effects as these potential combo's because we know that ipi is the bad boy of side effects no matter what we put it with. I realize you've taken both ipi and nivo singly….but that combo is clearly more effective for most compared to the combo's you are considering…and there are those for whom the combo worked when individual treatment did not….at least just til you start the trial???? c
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- June 30, 2016 at 2:26 pm
Hey Joshie….
So that was a load of mess, huh??? Best I could find for what it's worth.
Glad MDA folks are playing nice. Hope you are bout done with your leukophoresis at this point. Sounds like you have a plan in place….with just the need to ponder the treatment in betweeen….and sometimes that is half the battle.
Did they do an MRI of the brain?
Yes, sometimes it is very hard to be appreciative of the days we have…as burdens can be very heavy. I just try to take each day as it comes and find something that remains beautiful, can make me smile, or that I can do to bring a smile to someone else. I figure that's all that any of us have. Hang in there. You are much loved by many…and though it may not seem like it….I am sure you are lighting the way for those your know…and even those you don't. love, c
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- June 30, 2016 at 2:26 pm
Hey Joshie….
So that was a load of mess, huh??? Best I could find for what it's worth.
Glad MDA folks are playing nice. Hope you are bout done with your leukophoresis at this point. Sounds like you have a plan in place….with just the need to ponder the treatment in betweeen….and sometimes that is half the battle.
Did they do an MRI of the brain?
Yes, sometimes it is very hard to be appreciative of the days we have…as burdens can be very heavy. I just try to take each day as it comes and find something that remains beautiful, can make me smile, or that I can do to bring a smile to someone else. I figure that's all that any of us have. Hang in there. You are much loved by many…and though it may not seem like it….I am sure you are lighting the way for those your know…and even those you don't. love, c
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- June 30, 2016 at 2:26 pm
Hey Joshie….
So that was a load of mess, huh??? Best I could find for what it's worth.
Glad MDA folks are playing nice. Hope you are bout done with your leukophoresis at this point. Sounds like you have a plan in place….with just the need to ponder the treatment in betweeen….and sometimes that is half the battle.
Did they do an MRI of the brain?
Yes, sometimes it is very hard to be appreciative of the days we have…as burdens can be very heavy. I just try to take each day as it comes and find something that remains beautiful, can make me smile, or that I can do to bring a smile to someone else. I figure that's all that any of us have. Hang in there. You are much loved by many…and though it may not seem like it….I am sure you are lighting the way for those your know…and even those you don't. love, c
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- June 30, 2016 at 5:15 pm
Dear Josh,
maybe you will dislike me after me writing this, but i'll take my chance… Just in case, i am replying anonimously :-))
I personally believe that if you trully believe (not just hope) something you want will happen, it WILL happen… I don't believe in miracles, but in true power of belief (even though im an atheist)…
For example, i was in my early thirties and single… No guy in my life at all… I read a book about belief and not beeing sceptic, but surendered and calm and focused… And i said to myself i'm gonna get married in 2 years on a cerain date i picked in my calendar… I also said to my friends to reserve that date for my wedding and they all thought i was crazy and desperate… But i insisted… Ffwd, i met a guy next year and we got pretty serious in a short amount of time, but never in a million years did i think he would pop the question so soon… But he did… And he wanted (not me!!!) to tie the knot in the period arround the date i picked a year and a half ago (he btw didn t know ANYTHING about it) and i wanted to push it to the next spring… But then we agreed that it s best to do it then ( in case i got pregnant in the meantime) and we went to the place where you can get married in our city – only one place for civil ritual ( sorry, but i don't know what is the english word) and the only date available was the date i picked 1.5 year before… I never pushed for anything, wasnt maybe really ready for the next step, but! It happened just the way i believed it would… I didn't wish, hope or pray, i just surrendered and belived…
on the other hand, dunno why, but all my adult life i was thinking what if i never have kids…the thought crept in my mind as a teenager and hasn t left me since… My husband and i are perfectly healthy in that sense, doctors can t say why we cant conceive, but it just hasn t happened for us yet (5 years)… I hope, trully hope, but there is always fear present, it gets bigger every month and the big 'what if'… can t seem to find that calm place where believing is possible…
Sorry i'm writing about me, but just to give examples how universe works…
i often wonder about people who lived when Jesus did… He cured them of all sorts of diseases, but that was not because he was a superman (i strongly believe Jesus was just an ordinary fellow who was smart and spiritual and knew how the universe works), but an uneducated and ignorant person believed he was a miracle worker and believed he can cure them, so 'miracles' happened… It is often said that the more information and knowledge a person has, it is harder to just believe… But belief is the key…
i once read how (some decades ago) in one hospital, two guys were in one room, one really sick and the other in just for some exams… The paper work got mixed up and the sick one was told that he would be just fine and it's nothing serious, and the healthy one was informed that he was really sick… As a result, the sick one got better, but the healthy one started to believe he was sick and he really got sick… So, they both believed, just not the same thing… And they both got what they believed…
I trully hope you will take my post as it was ment, maybe you will get rid of the fear from 'what if' and get your mind in a calm place filled with strong, undoubtful belief you will be cured… No place for fear and scepticism, just pure belief… That is also the trickiest part, but only the total absence of fear and doubt makes 'miracles' happen… But it can be done, tell yourself that every day, all day as long as it takes and you will get there!!!!
all best to you!!!
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- June 30, 2016 at 7:05 pm
Dear Anon,
Yes, in simple terms its called the placebo effect, and why every new drug trial is done with a placebo control group. Invariably some of those getting the placebo do miraculously improve. There is no doubt the mind plays a role in healing, and at the same time, those of us deep in the battle with a relentless killer cannot rely on the power of our minds or prayer alone. Positive attitudes are a must, but its not a substitute for the medications which have been developed through much pain, sacrifice and expense to get us the kind of treatments available today. One of my relatives is a Psychiatrist who's specialty is psychosomatic illness. The same power to heal can also destroy, and again why those who obsess about their illness are doing more harm than good.
Gary
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- June 30, 2016 at 7:05 pm
Dear Anon,
Yes, in simple terms its called the placebo effect, and why every new drug trial is done with a placebo control group. Invariably some of those getting the placebo do miraculously improve. There is no doubt the mind plays a role in healing, and at the same time, those of us deep in the battle with a relentless killer cannot rely on the power of our minds or prayer alone. Positive attitudes are a must, but its not a substitute for the medications which have been developed through much pain, sacrifice and expense to get us the kind of treatments available today. One of my relatives is a Psychiatrist who's specialty is psychosomatic illness. The same power to heal can also destroy, and again why those who obsess about their illness are doing more harm than good.
Gary
-
- June 30, 2016 at 7:05 pm
Dear Anon,
Yes, in simple terms its called the placebo effect, and why every new drug trial is done with a placebo control group. Invariably some of those getting the placebo do miraculously improve. There is no doubt the mind plays a role in healing, and at the same time, those of us deep in the battle with a relentless killer cannot rely on the power of our minds or prayer alone. Positive attitudes are a must, but its not a substitute for the medications which have been developed through much pain, sacrifice and expense to get us the kind of treatments available today. One of my relatives is a Psychiatrist who's specialty is psychosomatic illness. The same power to heal can also destroy, and again why those who obsess about their illness are doing more harm than good.
Gary
-
- June 30, 2016 at 5:15 pm
Dear Josh,
maybe you will dislike me after me writing this, but i'll take my chance… Just in case, i am replying anonimously :-))
I personally believe that if you trully believe (not just hope) something you want will happen, it WILL happen… I don't believe in miracles, but in true power of belief (even though im an atheist)…
For example, i was in my early thirties and single… No guy in my life at all… I read a book about belief and not beeing sceptic, but surendered and calm and focused… And i said to myself i'm gonna get married in 2 years on a cerain date i picked in my calendar… I also said to my friends to reserve that date for my wedding and they all thought i was crazy and desperate… But i insisted… Ffwd, i met a guy next year and we got pretty serious in a short amount of time, but never in a million years did i think he would pop the question so soon… But he did… And he wanted (not me!!!) to tie the knot in the period arround the date i picked a year and a half ago (he btw didn t know ANYTHING about it) and i wanted to push it to the next spring… But then we agreed that it s best to do it then ( in case i got pregnant in the meantime) and we went to the place where you can get married in our city – only one place for civil ritual ( sorry, but i don't know what is the english word) and the only date available was the date i picked 1.5 year before… I never pushed for anything, wasnt maybe really ready for the next step, but! It happened just the way i believed it would… I didn't wish, hope or pray, i just surrendered and belived…
on the other hand, dunno why, but all my adult life i was thinking what if i never have kids…the thought crept in my mind as a teenager and hasn t left me since… My husband and i are perfectly healthy in that sense, doctors can t say why we cant conceive, but it just hasn t happened for us yet (5 years)… I hope, trully hope, but there is always fear present, it gets bigger every month and the big 'what if'… can t seem to find that calm place where believing is possible…
Sorry i'm writing about me, but just to give examples how universe works…
i often wonder about people who lived when Jesus did… He cured them of all sorts of diseases, but that was not because he was a superman (i strongly believe Jesus was just an ordinary fellow who was smart and spiritual and knew how the universe works), but an uneducated and ignorant person believed he was a miracle worker and believed he can cure them, so 'miracles' happened… It is often said that the more information and knowledge a person has, it is harder to just believe… But belief is the key…
i once read how (some decades ago) in one hospital, two guys were in one room, one really sick and the other in just for some exams… The paper work got mixed up and the sick one was told that he would be just fine and it's nothing serious, and the healthy one was informed that he was really sick… As a result, the sick one got better, but the healthy one started to believe he was sick and he really got sick… So, they both believed, just not the same thing… And they both got what they believed…
I trully hope you will take my post as it was ment, maybe you will get rid of the fear from 'what if' and get your mind in a calm place filled with strong, undoubtful belief you will be cured… No place for fear and scepticism, just pure belief… That is also the trickiest part, but only the total absence of fear and doubt makes 'miracles' happen… But it can be done, tell yourself that every day, all day as long as it takes and you will get there!!!!
all best to you!!!
-
- June 30, 2016 at 5:15 pm
Dear Josh,
maybe you will dislike me after me writing this, but i'll take my chance… Just in case, i am replying anonimously :-))
I personally believe that if you trully believe (not just hope) something you want will happen, it WILL happen… I don't believe in miracles, but in true power of belief (even though im an atheist)…
For example, i was in my early thirties and single… No guy in my life at all… I read a book about belief and not beeing sceptic, but surendered and calm and focused… And i said to myself i'm gonna get married in 2 years on a cerain date i picked in my calendar… I also said to my friends to reserve that date for my wedding and they all thought i was crazy and desperate… But i insisted… Ffwd, i met a guy next year and we got pretty serious in a short amount of time, but never in a million years did i think he would pop the question so soon… But he did… And he wanted (not me!!!) to tie the knot in the period arround the date i picked a year and a half ago (he btw didn t know ANYTHING about it) and i wanted to push it to the next spring… But then we agreed that it s best to do it then ( in case i got pregnant in the meantime) and we went to the place where you can get married in our city – only one place for civil ritual ( sorry, but i don't know what is the english word) and the only date available was the date i picked 1.5 year before… I never pushed for anything, wasnt maybe really ready for the next step, but! It happened just the way i believed it would… I didn't wish, hope or pray, i just surrendered and belived…
on the other hand, dunno why, but all my adult life i was thinking what if i never have kids…the thought crept in my mind as a teenager and hasn t left me since… My husband and i are perfectly healthy in that sense, doctors can t say why we cant conceive, but it just hasn t happened for us yet (5 years)… I hope, trully hope, but there is always fear present, it gets bigger every month and the big 'what if'… can t seem to find that calm place where believing is possible…
Sorry i'm writing about me, but just to give examples how universe works…
i often wonder about people who lived when Jesus did… He cured them of all sorts of diseases, but that was not because he was a superman (i strongly believe Jesus was just an ordinary fellow who was smart and spiritual and knew how the universe works), but an uneducated and ignorant person believed he was a miracle worker and believed he can cure them, so 'miracles' happened… It is often said that the more information and knowledge a person has, it is harder to just believe… But belief is the key…
i once read how (some decades ago) in one hospital, two guys were in one room, one really sick and the other in just for some exams… The paper work got mixed up and the sick one was told that he would be just fine and it's nothing serious, and the healthy one was informed that he was really sick… As a result, the sick one got better, but the healthy one started to believe he was sick and he really got sick… So, they both believed, just not the same thing… And they both got what they believed…
I trully hope you will take my post as it was ment, maybe you will get rid of the fear from 'what if' and get your mind in a calm place filled with strong, undoubtful belief you will be cured… No place for fear and scepticism, just pure belief… That is also the trickiest part, but only the total absence of fear and doubt makes 'miracles' happen… But it can be done, tell yourself that every day, all day as long as it takes and you will get there!!!!
all best to you!!!
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- June 30, 2016 at 6:53 pm
Hi Josh,
So glad to hear your surgery healing came along fine and you are now back in the battle via drug therapy. I am with Celeste, and am pretty sure I had asked quite some time ago why the ipi/nivo combo was not your next choice of therapy? It seems like the natural next step, and not going back in time with chemo drugs which have been proven less effective, and with more damaging side-effects. I think an important point is that your really large tumors have been removed, and although I cannot cite studies, in my case I am pretty sure my mixed response to ipi/nivo + radiation has been that my smaller tumors are getting smaller, but my big bad-boy which has fully engulfed my spleen continues to grow. You should at least be asking if, or why the combo is not being considered. On a final point, I too feel as though I may be on a similar trajectory having started out with multiple sub-q tumors of various sizes and locations, to now dealing with the internal variety. For the record, it looks like we will go after the splenic mass with radiation since I have responded well in the past, and the ongoing belief that I am benefiting from what I call the triple-play of ipi/nivo/radiation. However your treatment goes, you know there are many of us following your story and sending love and support through the universe.
Gary
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- June 30, 2016 at 7:18 pm
Dear Gary,
i hope that all of us believe in the therapy we receive not that the cancer will dissapear on its own! Maybe i wasn t clear with my post, but i want Josh (and others) to believe that the therapy WILL work!
i could never be so recless to suggest anything other than getting treated but believing it will work…
All best to you too…
-
- June 30, 2016 at 7:18 pm
Dear Gary,
i hope that all of us believe in the therapy we receive not that the cancer will dissapear on its own! Maybe i wasn t clear with my post, but i want Josh (and others) to believe that the therapy WILL work!
i could never be so recless to suggest anything other than getting treated but believing it will work…
All best to you too…
-
- June 30, 2016 at 8:56 pm
Anon-
Very good points by you and my buddy Gary which I fully believe in, so thank you. What is difficult is the "roller coaster" rude of emotions. I go from being extremely positive to terrified. It's another battle attached to the battle against the cancer in my body. I'm not what you call a religious person because I don't adhere to "organized religion". That being said I'm a full fledged Christian that believes in God, prays daily, and wants people to be well but also questions so many things. It's a conversation I can have for hours. My point being is, the fight to stay positive is there. I'm doing all of this because I know I can be healed….there is living proof in this forum. I believe finding the right treatment will heal me Lang with othe factors. I try to stay in the light more than being in the dark. It's a grueling journey and I've been blessed by the good Lord in so many ways that I feel guilty when i let darkness creep in. So not to get off on a tangent, thank you for your message. It is greatly appreciated and I will fight harder to remain positive because of it. I also wanted to let you know that I know you're coming from a good place and not saying that I shouldn't rely on medication. It is a combo…medication, lifestyle, positive thinking and blessings from my Lord & Savior. After all we're humans new to harness all that we can.
Josh
-
- June 30, 2016 at 8:56 pm
Anon-
Very good points by you and my buddy Gary which I fully believe in, so thank you. What is difficult is the "roller coaster" rude of emotions. I go from being extremely positive to terrified. It's another battle attached to the battle against the cancer in my body. I'm not what you call a religious person because I don't adhere to "organized religion". That being said I'm a full fledged Christian that believes in God, prays daily, and wants people to be well but also questions so many things. It's a conversation I can have for hours. My point being is, the fight to stay positive is there. I'm doing all of this because I know I can be healed….there is living proof in this forum. I believe finding the right treatment will heal me Lang with othe factors. I try to stay in the light more than being in the dark. It's a grueling journey and I've been blessed by the good Lord in so many ways that I feel guilty when i let darkness creep in. So not to get off on a tangent, thank you for your message. It is greatly appreciated and I will fight harder to remain positive because of it. I also wanted to let you know that I know you're coming from a good place and not saying that I shouldn't rely on medication. It is a combo…medication, lifestyle, positive thinking and blessings from my Lord & Savior. After all we're humans new to harness all that we can.
Josh
-
- June 30, 2016 at 8:56 pm
Anon-
Very good points by you and my buddy Gary which I fully believe in, so thank you. What is difficult is the "roller coaster" rude of emotions. I go from being extremely positive to terrified. It's another battle attached to the battle against the cancer in my body. I'm not what you call a religious person because I don't adhere to "organized religion". That being said I'm a full fledged Christian that believes in God, prays daily, and wants people to be well but also questions so many things. It's a conversation I can have for hours. My point being is, the fight to stay positive is there. I'm doing all of this because I know I can be healed….there is living proof in this forum. I believe finding the right treatment will heal me Lang with othe factors. I try to stay in the light more than being in the dark. It's a grueling journey and I've been blessed by the good Lord in so many ways that I feel guilty when i let darkness creep in. So not to get off on a tangent, thank you for your message. It is greatly appreciated and I will fight harder to remain positive because of it. I also wanted to let you know that I know you're coming from a good place and not saying that I shouldn't rely on medication. It is a combo…medication, lifestyle, positive thinking and blessings from my Lord & Savior. After all we're humans new to harness all that we can.
Josh
-
- June 30, 2016 at 7:18 pm
Dear Gary,
i hope that all of us believe in the therapy we receive not that the cancer will dissapear on its own! Maybe i wasn t clear with my post, but i want Josh (and others) to believe that the therapy WILL work!
i could never be so recless to suggest anything other than getting treated but believing it will work…
All best to you too…
-
- June 30, 2016 at 9:02 pm
Thanks for message buddy. I responded to Bubbles on why not ipi/nivo now. Basically grade 3/4 toxicity and I'm in a position to do a trial that they feel can be beneficial while keeping ipi/nivo in back pocket. If I do it now and get side effects then most likely no trial. I'm going to see one more doc next week to see what his thoughts are. Not easy decision….
Praying your radiation puts a hurt on tumo on spleen!!! Beat it don!
Josh
-
- June 30, 2016 at 9:02 pm
Thanks for message buddy. I responded to Bubbles on why not ipi/nivo now. Basically grade 3/4 toxicity and I'm in a position to do a trial that they feel can be beneficial while keeping ipi/nivo in back pocket. If I do it now and get side effects then most likely no trial. I'm going to see one more doc next week to see what his thoughts are. Not easy decision….
Praying your radiation puts a hurt on tumo on spleen!!! Beat it don!
Josh
-
- June 30, 2016 at 9:02 pm
Thanks for message buddy. I responded to Bubbles on why not ipi/nivo now. Basically grade 3/4 toxicity and I'm in a position to do a trial that they feel can be beneficial while keeping ipi/nivo in back pocket. If I do it now and get side effects then most likely no trial. I'm going to see one more doc next week to see what his thoughts are. Not easy decision….
Praying your radiation puts a hurt on tumo on spleen!!! Beat it don!
Josh
-
- June 30, 2016 at 6:53 pm
Hi Josh,
So glad to hear your surgery healing came along fine and you are now back in the battle via drug therapy. I am with Celeste, and am pretty sure I had asked quite some time ago why the ipi/nivo combo was not your next choice of therapy? It seems like the natural next step, and not going back in time with chemo drugs which have been proven less effective, and with more damaging side-effects. I think an important point is that your really large tumors have been removed, and although I cannot cite studies, in my case I am pretty sure my mixed response to ipi/nivo + radiation has been that my smaller tumors are getting smaller, but my big bad-boy which has fully engulfed my spleen continues to grow. You should at least be asking if, or why the combo is not being considered. On a final point, I too feel as though I may be on a similar trajectory having started out with multiple sub-q tumors of various sizes and locations, to now dealing with the internal variety. For the record, it looks like we will go after the splenic mass with radiation since I have responded well in the past, and the ongoing belief that I am benefiting from what I call the triple-play of ipi/nivo/radiation. However your treatment goes, you know there are many of us following your story and sending love and support through the universe.
Gary
-
- June 30, 2016 at 6:53 pm
Hi Josh,
So glad to hear your surgery healing came along fine and you are now back in the battle via drug therapy. I am with Celeste, and am pretty sure I had asked quite some time ago why the ipi/nivo combo was not your next choice of therapy? It seems like the natural next step, and not going back in time with chemo drugs which have been proven less effective, and with more damaging side-effects. I think an important point is that your really large tumors have been removed, and although I cannot cite studies, in my case I am pretty sure my mixed response to ipi/nivo + radiation has been that my smaller tumors are getting smaller, but my big bad-boy which has fully engulfed my spleen continues to grow. You should at least be asking if, or why the combo is not being considered. On a final point, I too feel as though I may be on a similar trajectory having started out with multiple sub-q tumors of various sizes and locations, to now dealing with the internal variety. For the record, it looks like we will go after the splenic mass with radiation since I have responded well in the past, and the ongoing belief that I am benefiting from what I call the triple-play of ipi/nivo/radiation. However your treatment goes, you know there are many of us following your story and sending love and support through the universe.
Gary
-
- July 1, 2016 at 6:10 pm
Josh, thanks for the update. I've been thinking about you. You've got a good plan. I saw Davies last year and really like him. I'd go back to MDA in a heartbeat if I needed to.
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- July 2, 2016 at 9:44 am
Josh,
My husband also used DTIC in November of last year. We consulted with Sloan Kettering. Dr. Chapman said they are using the older chemo drugs as a bridge to another treatment or as a last resort. They are finding it to be beneficial. I'm sure you're getting the pill form because you need a port otherwise because it's way too painful by IV. Bill had to go in the hospital because of dangerously low blood counts after the second dose of DTIC, but his scan results were very very good!!!! I agree the TIL treatment can truly be life saving and the Ipi/ Nivo combo does have very serious side effects that definitely could take you out of the TIL treatment. Bill had the TIL treatment first and even though he wasn't considered a responder, we very strongly feel the combination of the TIL and then doing the Ipi/Nivo combination afterwards made a huge difference. He isn't NED yet and he has a scan coming up the end of the month. Even though I don't have the disease I am terrified of each scan!!!! We have been married for 37 years and he is my best friend!!!! Bill handles the emotions of it much better than I do, but his last scan he was very nervous. Life is truly so precious that trying to focus on small things that bring joy are very important. Hugging your spouse and children even more than usual, watching a funny movie, being in nature, helping others and mediation help me.We have been dealing with Bill having stage 4 for almost four years. We don't know what normal is anymore, but we keep hoping one day we will be in a better place with his disease. We are hoping for the same for you and all others fighting this disease. Keep fighting and sharing your experience. You are helping many by doing that and I'm sure it helps you too to write your feelings.
Maureen
-
- July 2, 2016 at 9:44 am
Josh,
My husband also used DTIC in November of last year. We consulted with Sloan Kettering. Dr. Chapman said they are using the older chemo drugs as a bridge to another treatment or as a last resort. They are finding it to be beneficial. I'm sure you're getting the pill form because you need a port otherwise because it's way too painful by IV. Bill had to go in the hospital because of dangerously low blood counts after the second dose of DTIC, but his scan results were very very good!!!! I agree the TIL treatment can truly be life saving and the Ipi/ Nivo combo does have very serious side effects that definitely could take you out of the TIL treatment. Bill had the TIL treatment first and even though he wasn't considered a responder, we very strongly feel the combination of the TIL and then doing the Ipi/Nivo combination afterwards made a huge difference. He isn't NED yet and he has a scan coming up the end of the month. Even though I don't have the disease I am terrified of each scan!!!! We have been married for 37 years and he is my best friend!!!! Bill handles the emotions of it much better than I do, but his last scan he was very nervous. Life is truly so precious that trying to focus on small things that bring joy are very important. Hugging your spouse and children even more than usual, watching a funny movie, being in nature, helping others and mediation help me.We have been dealing with Bill having stage 4 for almost four years. We don't know what normal is anymore, but we keep hoping one day we will be in a better place with his disease. We are hoping for the same for you and all others fighting this disease. Keep fighting and sharing your experience. You are helping many by doing that and I'm sure it helps you too to write your feelings.
Maureen
-
- July 2, 2016 at 9:44 am
Josh,
My husband also used DTIC in November of last year. We consulted with Sloan Kettering. Dr. Chapman said they are using the older chemo drugs as a bridge to another treatment or as a last resort. They are finding it to be beneficial. I'm sure you're getting the pill form because you need a port otherwise because it's way too painful by IV. Bill had to go in the hospital because of dangerously low blood counts after the second dose of DTIC, but his scan results were very very good!!!! I agree the TIL treatment can truly be life saving and the Ipi/ Nivo combo does have very serious side effects that definitely could take you out of the TIL treatment. Bill had the TIL treatment first and even though he wasn't considered a responder, we very strongly feel the combination of the TIL and then doing the Ipi/Nivo combination afterwards made a huge difference. He isn't NED yet and he has a scan coming up the end of the month. Even though I don't have the disease I am terrified of each scan!!!! We have been married for 37 years and he is my best friend!!!! Bill handles the emotions of it much better than I do, but his last scan he was very nervous. Life is truly so precious that trying to focus on small things that bring joy are very important. Hugging your spouse and children even more than usual, watching a funny movie, being in nature, helping others and mediation help me.We have been dealing with Bill having stage 4 for almost four years. We don't know what normal is anymore, but we keep hoping one day we will be in a better place with his disease. We are hoping for the same for you and all others fighting this disease. Keep fighting and sharing your experience. You are helping many by doing that and I'm sure it helps you too to write your feelings.
Maureen
-
- July 3, 2016 at 6:18 pm
Thanks for message Maureen. You've always been so kind in your responses. I realize here many people respond and actually know how it feels…the anxiety, fear and gamut of emotions. I'm still devastated but need to press on. I've never been in this bad of a spot before and I'm trying to be positive…I know attitude matters. It's a whole other battle. Wishing you and Bill the best and blessings on next scan!!
Josh
-
- July 4, 2016 at 11:11 pm
Josh,
I tried to write a reply this morning, but this site can be very frustrating to post something!! I'm very sorry you feel you're at a low point, but just know my husband Bill and many others have felt the same way and preservered. Bill has been told awful things, but he has survived. Each treatment can have a synergistic effect on the next treatment. You have been an excellent advocate for yourself. Keep asking information from the the top melanoma doctors. You are in one of the top three melanoma treatment centers!!! TIL is an excellent treatment and you have the Ipi/ Nivo treatment in your back pocket. Bill has always felt that if he could survive the five year mark of stage four, the statistics are better for surviving the disease. Keep a close knit group of supporters close to you. Seek help if you need it. I'm on anxiety medicine and I regularly see a therapist. It helps. I know my husband doesn't always share his feelings with me because he knows how terrified I am so it might help you too to talk to someone neutral. I truly believe that in the near future this disease could become a chronic disease that can be maintained. My sister always tells me to expect the best instead of worrying all the time. That's wonderful advice that I wish I could follow more. Please take care and know you and your family are in our prayers!! Keep fighting Josh!! You can do it!!
Maureen
-
- July 4, 2016 at 11:11 pm
Josh,
I tried to write a reply this morning, but this site can be very frustrating to post something!! I'm very sorry you feel you're at a low point, but just know my husband Bill and many others have felt the same way and preservered. Bill has been told awful things, but he has survived. Each treatment can have a synergistic effect on the next treatment. You have been an excellent advocate for yourself. Keep asking information from the the top melanoma doctors. You are in one of the top three melanoma treatment centers!!! TIL is an excellent treatment and you have the Ipi/ Nivo treatment in your back pocket. Bill has always felt that if he could survive the five year mark of stage four, the statistics are better for surviving the disease. Keep a close knit group of supporters close to you. Seek help if you need it. I'm on anxiety medicine and I regularly see a therapist. It helps. I know my husband doesn't always share his feelings with me because he knows how terrified I am so it might help you too to talk to someone neutral. I truly believe that in the near future this disease could become a chronic disease that can be maintained. My sister always tells me to expect the best instead of worrying all the time. That's wonderful advice that I wish I could follow more. Please take care and know you and your family are in our prayers!! Keep fighting Josh!! You can do it!!
Maureen
-
- July 4, 2016 at 11:11 pm
Josh,
I tried to write a reply this morning, but this site can be very frustrating to post something!! I'm very sorry you feel you're at a low point, but just know my husband Bill and many others have felt the same way and preservered. Bill has been told awful things, but he has survived. Each treatment can have a synergistic effect on the next treatment. You have been an excellent advocate for yourself. Keep asking information from the the top melanoma doctors. You are in one of the top three melanoma treatment centers!!! TIL is an excellent treatment and you have the Ipi/ Nivo treatment in your back pocket. Bill has always felt that if he could survive the five year mark of stage four, the statistics are better for surviving the disease. Keep a close knit group of supporters close to you. Seek help if you need it. I'm on anxiety medicine and I regularly see a therapist. It helps. I know my husband doesn't always share his feelings with me because he knows how terrified I am so it might help you too to talk to someone neutral. I truly believe that in the near future this disease could become a chronic disease that can be maintained. My sister always tells me to expect the best instead of worrying all the time. That's wonderful advice that I wish I could follow more. Please take care and know you and your family are in our prayers!! Keep fighting Josh!! You can do it!!
Maureen
-
- July 3, 2016 at 6:18 pm
Thanks for message Maureen. You've always been so kind in your responses. I realize here many people respond and actually know how it feels…the anxiety, fear and gamut of emotions. I'm still devastated but need to press on. I've never been in this bad of a spot before and I'm trying to be positive…I know attitude matters. It's a whole other battle. Wishing you and Bill the best and blessings on next scan!!
Josh
-
- July 3, 2016 at 6:18 pm
Thanks for message Maureen. You've always been so kind in your responses. I realize here many people respond and actually know how it feels…the anxiety, fear and gamut of emotions. I'm still devastated but need to press on. I've never been in this bad of a spot before and I'm trying to be positive…I know attitude matters. It's a whole other battle. Wishing you and Bill the best and blessings on next scan!!
Josh
-
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