› Forums › General Melanoma Community › Blood Work, Ipi & Radiation
- This topic has 30 replies, 6 voices, and was last updated 9 years, 7 months ago by
WithinMySkin.
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- August 8, 2016 at 8:27 pm
So I had last radiation treatment, 3rd and final infusion of ipi (start washout for trial) and interesting blood work results. Not to get long winded but trying to make sense of what I found on the one and only Bubbles blog in regards to NLR and elevated eosinophils. So I noticed in the past 3 blood tests that my eosinophils have gradually been going up and this last blood test shocked me a bit. Now I think I understand NLR and it's easy to figure out…I've always had an NLR less than 5 which would make sense that I did initially have a good response to ipi and hoping that ipi does something for me again this time. What really caught my eye was the elevated eosinophils. I know different labs use different ranges and I've noticed this from MDA, to my local onc to my PCP. That being said, for the the most part the ranges fall into what Celeste had on her blog…this is what my current blood test said…
Eosinophils 1.1/Kmcl with a standard range of .10-.50
Eosinophil % mine was 20%…normal range 1-6%
Both of these were marked as high…
This explain why I feel like I have a fever at times but no temperature? Or can eosinophils be elevated from radiation? Seems unlikely and nurse said high doses of radiation lower some blood counts and that my dosing wouldn't be significant. I did my NLR and it was less than 3. I of course am trying to be optimistic but cautious because as many of you know, I went NED on ipi only to be back in trouble. I by no means have been typical which is why I tell myself not to look at this stuff…I guess it's the hope that I can and will overcome this to watch my kids get older. It's why I keep seeking out everything and anything to beat this…
Josh
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- August 8, 2016 at 8:58 pm
Hey Josh,
Good to hear from you. My first instinct is if the doctors are not worried, you don't need to be. Various highs and lows in blood work should be expected considering the stuff they pump in us. That said, I have always had very boring blood work with only a few categories either a little above or below ranges, with the exception of my high LDH. At the same time, I have also resisted most treatments and only now with the triple-play of ipi/nivo/radiation am seeing a partial response. I have long suspected side-effects (which I have few) are tied to better outcomes, so perhaps in a sign your body is somehow responding to treatment, this could very well be a good thing. As always, we are rooting for you and want to hear all about your ACT treatment and hope it proves to be the silver bullet to durable NED status.
Gary
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- August 8, 2016 at 9:40 pm
Thanks Gary…god to hear you're getting a response. Any luck on larger tumor? Hopefully knocking that thing back!!
I've had minimal side effects this go around other than feeling malaise. I don't think I had any side effects until after 3rd dose last time and it was a rash and hypothyroidism. Odd thing is, thyroid was finally under control on this blood test. Things got out of whack again when I started PD-1. Anyway, it'd be nice to know not just if side effects result in response but how to tweak individual to get best possible chance of response.
Josh
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- August 9, 2016 at 6:14 pm
Hey Josh,
Regarding my grapefruit sized tumor engulfing my spleen, this situation continues to perplex me on how to deal with it. I'll be taking another long and expensive trip to visit my specialist in a week or so to try and come to a conclusion on how to proceed. Radiation to entire tumor, and risk permanently damaging very sensitive stomach and colon tissues. Treat only part of the tumor, leaving a third of it behind untreated, or remove entire spleen via surgery. Of course ideally my immunotherapy would begin to make inroads, but that has yet to occur. Watch and wait for that outcome is still under consideration. Is there ever a simple answer when dealing with the monster? One thing I looked into was Proton Beam Therapy, which sounds awesome, and is a primary treatment for uveal melanoma, but initial inquiries lean on it not being an option for notoriously hard, solid melanomas. I would love to hear of anyone who did treat mel with PBT.
Gary
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- August 9, 2016 at 8:19 pm
Hi Gary-
Yes wouldn't it be nice to have simple answers. The decision making process is tough…which is the right one? i don't know anyone who's done PBT. Put it out on the forum and see what comes back. Wonder if Cekeste has anything on her blog. Either way I feel for you, I know it's tough and choosing a path; second guessing is what I do best. I just need September 8th to get here and get on with treatment so I can stop the back & forth in my head. I'll be thinking about you my friend…keep me posted!!
Josh
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- August 9, 2016 at 8:19 pm
Hi Gary-
Yes wouldn't it be nice to have simple answers. The decision making process is tough…which is the right one? i don't know anyone who's done PBT. Put it out on the forum and see what comes back. Wonder if Cekeste has anything on her blog. Either way I feel for you, I know it's tough and choosing a path; second guessing is what I do best. I just need September 8th to get here and get on with treatment so I can stop the back & forth in my head. I'll be thinking about you my friend…keep me posted!!
Josh
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- August 9, 2016 at 8:19 pm
Hi Gary-
Yes wouldn't it be nice to have simple answers. The decision making process is tough…which is the right one? i don't know anyone who's done PBT. Put it out on the forum and see what comes back. Wonder if Cekeste has anything on her blog. Either way I feel for you, I know it's tough and choosing a path; second guessing is what I do best. I just need September 8th to get here and get on with treatment so I can stop the back & forth in my head. I'll be thinking about you my friend…keep me posted!!
Josh
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- August 9, 2016 at 6:14 pm
Hey Josh,
Regarding my grapefruit sized tumor engulfing my spleen, this situation continues to perplex me on how to deal with it. I'll be taking another long and expensive trip to visit my specialist in a week or so to try and come to a conclusion on how to proceed. Radiation to entire tumor, and risk permanently damaging very sensitive stomach and colon tissues. Treat only part of the tumor, leaving a third of it behind untreated, or remove entire spleen via surgery. Of course ideally my immunotherapy would begin to make inroads, but that has yet to occur. Watch and wait for that outcome is still under consideration. Is there ever a simple answer when dealing with the monster? One thing I looked into was Proton Beam Therapy, which sounds awesome, and is a primary treatment for uveal melanoma, but initial inquiries lean on it not being an option for notoriously hard, solid melanomas. I would love to hear of anyone who did treat mel with PBT.
Gary
-
- August 9, 2016 at 6:14 pm
Hey Josh,
Regarding my grapefruit sized tumor engulfing my spleen, this situation continues to perplex me on how to deal with it. I'll be taking another long and expensive trip to visit my specialist in a week or so to try and come to a conclusion on how to proceed. Radiation to entire tumor, and risk permanently damaging very sensitive stomach and colon tissues. Treat only part of the tumor, leaving a third of it behind untreated, or remove entire spleen via surgery. Of course ideally my immunotherapy would begin to make inroads, but that has yet to occur. Watch and wait for that outcome is still under consideration. Is there ever a simple answer when dealing with the monster? One thing I looked into was Proton Beam Therapy, which sounds awesome, and is a primary treatment for uveal melanoma, but initial inquiries lean on it not being an option for notoriously hard, solid melanomas. I would love to hear of anyone who did treat mel with PBT.
Gary
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- August 8, 2016 at 9:40 pm
Thanks Gary…god to hear you're getting a response. Any luck on larger tumor? Hopefully knocking that thing back!!
I've had minimal side effects this go around other than feeling malaise. I don't think I had any side effects until after 3rd dose last time and it was a rash and hypothyroidism. Odd thing is, thyroid was finally under control on this blood test. Things got out of whack again when I started PD-1. Anyway, it'd be nice to know not just if side effects result in response but how to tweak individual to get best possible chance of response.
Josh
-
- August 8, 2016 at 9:40 pm
Thanks Gary…god to hear you're getting a response. Any luck on larger tumor? Hopefully knocking that thing back!!
I've had minimal side effects this go around other than feeling malaise. I don't think I had any side effects until after 3rd dose last time and it was a rash and hypothyroidism. Odd thing is, thyroid was finally under control on this blood test. Things got out of whack again when I started PD-1. Anyway, it'd be nice to know not just if side effects result in response but how to tweak individual to get best possible chance of response.
Josh
-
- August 8, 2016 at 8:58 pm
Hey Josh,
Good to hear from you. My first instinct is if the doctors are not worried, you don't need to be. Various highs and lows in blood work should be expected considering the stuff they pump in us. That said, I have always had very boring blood work with only a few categories either a little above or below ranges, with the exception of my high LDH. At the same time, I have also resisted most treatments and only now with the triple-play of ipi/nivo/radiation am seeing a partial response. I have long suspected side-effects (which I have few) are tied to better outcomes, so perhaps in a sign your body is somehow responding to treatment, this could very well be a good thing. As always, we are rooting for you and want to hear all about your ACT treatment and hope it proves to be the silver bullet to durable NED status.
Gary
-
- August 8, 2016 at 8:58 pm
Hey Josh,
Good to hear from you. My first instinct is if the doctors are not worried, you don't need to be. Various highs and lows in blood work should be expected considering the stuff they pump in us. That said, I have always had very boring blood work with only a few categories either a little above or below ranges, with the exception of my high LDH. At the same time, I have also resisted most treatments and only now with the triple-play of ipi/nivo/radiation am seeing a partial response. I have long suspected side-effects (which I have few) are tied to better outcomes, so perhaps in a sign your body is somehow responding to treatment, this could very well be a good thing. As always, we are rooting for you and want to hear all about your ACT treatment and hope it proves to be the silver bullet to durable NED status.
Gary
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- August 8, 2016 at 9:02 pm
Hey Joshie,
Hey, the way I see it…good is GOOD!!! That sounds like eosinophilia to me!! And the data shows that increased eosinophils correlates to better immune responses. I'll take it!!!
For those of you who think we are speaking jibberish…we are…but here's a link (with 2 additional links on the same topic within) that explains a bit: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/markers-for-response-to-immunotherapy.html
Unfortunately, we can't bet on these things….or rest on our laurels if they show up….but I'll take a positive sign anyday. SO…..get ready for teenage attitudes, broken hearts, crazy teen drivers (Oh yeah!!!), graduations…and all that jazz!!!!
love, c
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- August 8, 2016 at 9:02 pm
Hey Joshie,
Hey, the way I see it…good is GOOD!!! That sounds like eosinophilia to me!! And the data shows that increased eosinophils correlates to better immune responses. I'll take it!!!
For those of you who think we are speaking jibberish…we are…but here's a link (with 2 additional links on the same topic within) that explains a bit: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/markers-for-response-to-immunotherapy.html
Unfortunately, we can't bet on these things….or rest on our laurels if they show up….but I'll take a positive sign anyday. SO…..get ready for teenage attitudes, broken hearts, crazy teen drivers (Oh yeah!!!), graduations…and all that jazz!!!!
love, c
-
- August 8, 2016 at 9:02 pm
Hey Joshie,
Hey, the way I see it…good is GOOD!!! That sounds like eosinophilia to me!! And the data shows that increased eosinophils correlates to better immune responses. I'll take it!!!
For those of you who think we are speaking jibberish…we are…but here's a link (with 2 additional links on the same topic within) that explains a bit: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/markers-for-response-to-immunotherapy.html
Unfortunately, we can't bet on these things….or rest on our laurels if they show up….but I'll take a positive sign anyday. SO…..get ready for teenage attitudes, broken hearts, crazy teen drivers (Oh yeah!!!), graduations…and all that jazz!!!!
love, c
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- August 9, 2016 at 12:49 am
Josh, That an interesting reading. I'd be cautiously optimistic as well. Curious if you will have one more prescan before getting the trial treatment.
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- August 9, 2016 at 2:14 am
Hey Brian-
How are you? I caught up on your meeting with Weber…praying things turn out well. Like me you have so much you want to cover in an appt but never get to…frustrating. I've often wonder if I should do a consult with him. Always trying to stay ahead.
So I will have scans and more blood work right before infusion date. I'll be curious as to how the cell counts in blood are in 3 weeks. I feel like I have the flu but no fever. This happened first time with ipi but was closer to last dose. This started happening right before 2nd infusion this time. No other side effects. It's why I say cautiously optimistic. Too many ups & downs!
Be well!!!
Josh
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- August 9, 2016 at 2:14 am
Hey Brian-
How are you? I caught up on your meeting with Weber…praying things turn out well. Like me you have so much you want to cover in an appt but never get to…frustrating. I've often wonder if I should do a consult with him. Always trying to stay ahead.
So I will have scans and more blood work right before infusion date. I'll be curious as to how the cell counts in blood are in 3 weeks. I feel like I have the flu but no fever. This happened first time with ipi but was closer to last dose. This started happening right before 2nd infusion this time. No other side effects. It's why I say cautiously optimistic. Too many ups & downs!
Be well!!!
Josh
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- August 9, 2016 at 2:14 am
Hey Brian-
How are you? I caught up on your meeting with Weber…praying things turn out well. Like me you have so much you want to cover in an appt but never get to…frustrating. I've often wonder if I should do a consult with him. Always trying to stay ahead.
So I will have scans and more blood work right before infusion date. I'll be curious as to how the cell counts in blood are in 3 weeks. I feel like I have the flu but no fever. This happened first time with ipi but was closer to last dose. This started happening right before 2nd infusion this time. No other side effects. It's why I say cautiously optimistic. Too many ups & downs!
Be well!!!
Josh
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- August 11, 2016 at 11:56 am
Hang in there, Josh! I know you’re feeling crummy, but that’s probably your immune system ramping up. Let your body fight the fight and give those kids a big hug! Thinking of you! -
- August 11, 2016 at 11:56 am
Hang in there, Josh! I know you’re feeling crummy, but that’s probably your immune system ramping up. Let your body fight the fight and give those kids a big hug! Thinking of you! -
- August 11, 2016 at 11:56 am
Hang in there, Josh! I know you’re feeling crummy, but that’s probably your immune system ramping up. Let your body fight the fight and give those kids a big hug! Thinking of you!
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