› Forums › General Melanoma Community › Just want to Vent
- This topic has 39 replies, 10 voices, and was last updated 8 years, 5 months ago by
Patrisa.
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- November 20, 2016 at 4:52 pm
HI MPIP Family-
I just wanted to put out a message venting. So I'm heading to Houston tomorrow as I'm scheduled to get 4th ipi dose on Tuesday. While I'd never give up the fight, my optimism and half glass full attitude on this Adoptive Cell Therapy is quickly fading and turning to half glass empty. While I believe my body attempted to mount an immune response, my sub q's are still there and now I've noticed a small sore lump in side of neck.I feel pretty good but I'm so disappointed. I don't know what to think…I'm not sure doing ipi Tuesday and waiting to do scans on Dec 15-16 is a good plan. I'm sure MDA will think it is but I'm very wishy washy. This would be my 11th dose of ipi in last 3 years….starting to think that ipi as single agent isn't my long term fix. I fought so hard to get those Tcells infused into me, brain mets, infection, liver out of whack and for the first time in 5 years I was physically impacted/ill from this disease. But I made it and was so hopeful. This is what I love and hate about this forum…the disappointment I have to read from so many, yet I love that I can just open up because so many of you understand and have been there. Sorry I'm biased because I only want to hear good things out of this forum as we all do, I'm so saddened by the struggles but so grateful we're hear to pick each other up and push us forward. Blessings to you all, I'm going to hug my wife & kids a few more times today…it helps when I'm completely broken.
Josh
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- November 20, 2016 at 5:07 pm
Hey Joshie,
Sorry you are feeling down. I don't blame you, you've been a pretty good diagnostician for yourself. However, hang on!!! Just a bit longer and let's see what's what for sure! Maybe you could push the scans forward so you can figure things out sooner. Maybe one of your critters gave you a bit of a bug and the tender lump you feel is only kiddie cooties! I know….I may be a Polly Anna…but let's give it one more minute. You've come this far! And….if we must….we can figure out the next step!!! Rant away. Hug your punkins. Know we love you, too. love, c
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- November 20, 2016 at 5:07 pm
Hey Joshie,
Sorry you are feeling down. I don't blame you, you've been a pretty good diagnostician for yourself. However, hang on!!! Just a bit longer and let's see what's what for sure! Maybe you could push the scans forward so you can figure things out sooner. Maybe one of your critters gave you a bit of a bug and the tender lump you feel is only kiddie cooties! I know….I may be a Polly Anna…but let's give it one more minute. You've come this far! And….if we must….we can figure out the next step!!! Rant away. Hug your punkins. Know we love you, too. love, c
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- November 20, 2016 at 5:07 pm
Hey Joshie,
Sorry you are feeling down. I don't blame you, you've been a pretty good diagnostician for yourself. However, hang on!!! Just a bit longer and let's see what's what for sure! Maybe you could push the scans forward so you can figure things out sooner. Maybe one of your critters gave you a bit of a bug and the tender lump you feel is only kiddie cooties! I know….I may be a Polly Anna…but let's give it one more minute. You've come this far! And….if we must….we can figure out the next step!!! Rant away. Hug your punkins. Know we love you, too. love, c
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- November 20, 2016 at 6:18 pm
Dear Josh,
so sorry you feel down and not that hopeful, but you can't know for sure what the results will be, maybe not all is as bad as you fear… Yes, subs are still there, but some patients respond really quickly and for some it takes more time… your t cells are in there, i bet they are not just floating around doing nothing, so give them just a little more time…
Maybe your 'new' situation on your neck isn't new, but is just inflamed… my fathers large sub only got painful and larger after he started keytruda, Prior to the treatment it was painless… so we took it as a sign that something good was happening…
Also you said you feel pretty ok, i take that as a good sign…
Love to you and your loved ones!
Patrisa
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- November 20, 2016 at 6:18 pm
Dear Josh,
so sorry you feel down and not that hopeful, but you can't know for sure what the results will be, maybe not all is as bad as you fear… Yes, subs are still there, but some patients respond really quickly and for some it takes more time… your t cells are in there, i bet they are not just floating around doing nothing, so give them just a little more time…
Maybe your 'new' situation on your neck isn't new, but is just inflamed… my fathers large sub only got painful and larger after he started keytruda, Prior to the treatment it was painless… so we took it as a sign that something good was happening…
Also you said you feel pretty ok, i take that as a good sign…
Love to you and your loved ones!
Patrisa
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- November 20, 2016 at 6:18 pm
Dear Josh,
so sorry you feel down and not that hopeful, but you can't know for sure what the results will be, maybe not all is as bad as you fear… Yes, subs are still there, but some patients respond really quickly and for some it takes more time… your t cells are in there, i bet they are not just floating around doing nothing, so give them just a little more time…
Maybe your 'new' situation on your neck isn't new, but is just inflamed… my fathers large sub only got painful and larger after he started keytruda, Prior to the treatment it was painless… so we took it as a sign that something good was happening…
Also you said you feel pretty ok, i take that as a good sign…
Love to you and your loved ones!
Patrisa
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- November 20, 2016 at 7:24 pm
Hi Josh,
This is the place, please vent away. Do anything that helps relieve the tension and anxiety of disappointment. We are feeling you. I agree that you just have no choice but to hang in there and give things time. Scans are not too far away and treatments just take longer sometimes. I do recall we talked about doing anti PD-1. I think you wanted to keep it in your back-pocket and perhaps it's time. I got bad news recently, and am heading for major surgery. I wanted so badly for the immunotherapy to do the job, but it was only able to tackle small tumors. I'm in doubt, and its time to cut it out. It's kept me up at night, and all I can do is try and switch gears, and put those thoughts of why I am fighting the fight in my head and push out the demons. We are with you my friend. Hang in there.
Gary
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- November 20, 2016 at 7:24 pm
Hi Josh,
This is the place, please vent away. Do anything that helps relieve the tension and anxiety of disappointment. We are feeling you. I agree that you just have no choice but to hang in there and give things time. Scans are not too far away and treatments just take longer sometimes. I do recall we talked about doing anti PD-1. I think you wanted to keep it in your back-pocket and perhaps it's time. I got bad news recently, and am heading for major surgery. I wanted so badly for the immunotherapy to do the job, but it was only able to tackle small tumors. I'm in doubt, and its time to cut it out. It's kept me up at night, and all I can do is try and switch gears, and put those thoughts of why I am fighting the fight in my head and push out the demons. We are with you my friend. Hang in there.
Gary
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- November 20, 2016 at 7:24 pm
Hi Josh,
This is the place, please vent away. Do anything that helps relieve the tension and anxiety of disappointment. We are feeling you. I agree that you just have no choice but to hang in there and give things time. Scans are not too far away and treatments just take longer sometimes. I do recall we talked about doing anti PD-1. I think you wanted to keep it in your back-pocket and perhaps it's time. I got bad news recently, and am heading for major surgery. I wanted so badly for the immunotherapy to do the job, but it was only able to tackle small tumors. I'm in doubt, and its time to cut it out. It's kept me up at night, and all I can do is try and switch gears, and put those thoughts of why I am fighting the fight in my head and push out the demons. We are with you my friend. Hang in there.
Gary
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- November 20, 2016 at 9:56 pm
Hi Josh,
sorry you feeling like you are at moment. Like you said good to rant when need too to friends on here. Scans are not long now . I have mine 20 th December that will be 6 months wait from last scans and had a brain tumour so am getting anxious due to long wait. I have had only 4 doses of ippi last dose last June then gamma knife in March this year. Was hoping to be put on treatment after gamma knife but was not . Stay strong my friend we are all here for you Hun .
Scooby xx
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- November 20, 2016 at 9:56 pm
Hi Josh,
sorry you feeling like you are at moment. Like you said good to rant when need too to friends on here. Scans are not long now . I have mine 20 th December that will be 6 months wait from last scans and had a brain tumour so am getting anxious due to long wait. I have had only 4 doses of ippi last dose last June then gamma knife in March this year. Was hoping to be put on treatment after gamma knife but was not . Stay strong my friend we are all here for you Hun .
Scooby xx
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- November 20, 2016 at 9:56 pm
Hi Josh,
sorry you feeling like you are at moment. Like you said good to rant when need too to friends on here. Scans are not long now . I have mine 20 th December that will be 6 months wait from last scans and had a brain tumour so am getting anxious due to long wait. I have had only 4 doses of ippi last dose last June then gamma knife in March this year. Was hoping to be put on treatment after gamma knife but was not . Stay strong my friend we are all here for you Hun .
Scooby xx
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- November 21, 2016 at 1:41 am
Hi Josh. I am so sorry that you are feeling so frustrated. I can't say that I have been in your shoes with Mel, but I have been there with other illnesses. Frustration of the "roller coaster" ride that illness puts people on, it gets so old! All I do know is that you have to just keep pressing forward, if not for yourself, for your family. Some days I would rather just crawl under a rock and never come out, but I have a wonderful husband and daughter that love me and it wouldn't be fair to them. So I keep pressing forward. I can't imagine the frustration you must feel at this point of the game, but what I do know is that you have it in you to keep fighting. You are a WARRIOR!! You have offered such great advise and comfort on this forum, its nice to see you reaching out for that same comfort from others when you are in need.
I wish you only the best, you got this!!!
🙂
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- November 21, 2016 at 1:41 am
Hi Josh. I am so sorry that you are feeling so frustrated. I can't say that I have been in your shoes with Mel, but I have been there with other illnesses. Frustration of the "roller coaster" ride that illness puts people on, it gets so old! All I do know is that you have to just keep pressing forward, if not for yourself, for your family. Some days I would rather just crawl under a rock and never come out, but I have a wonderful husband and daughter that love me and it wouldn't be fair to them. So I keep pressing forward. I can't imagine the frustration you must feel at this point of the game, but what I do know is that you have it in you to keep fighting. You are a WARRIOR!! You have offered such great advise and comfort on this forum, its nice to see you reaching out for that same comfort from others when you are in need.
I wish you only the best, you got this!!!
🙂
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- November 21, 2016 at 1:41 am
Hi Josh. I am so sorry that you are feeling so frustrated. I can't say that I have been in your shoes with Mel, but I have been there with other illnesses. Frustration of the "roller coaster" ride that illness puts people on, it gets so old! All I do know is that you have to just keep pressing forward, if not for yourself, for your family. Some days I would rather just crawl under a rock and never come out, but I have a wonderful husband and daughter that love me and it wouldn't be fair to them. So I keep pressing forward. I can't imagine the frustration you must feel at this point of the game, but what I do know is that you have it in you to keep fighting. You are a WARRIOR!! You have offered such great advise and comfort on this forum, its nice to see you reaching out for that same comfort from others when you are in need.
I wish you only the best, you got this!!!
🙂
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- November 22, 2016 at 9:14 pm
Hey Josh-
I dont have much to add to what others have said, nor have I been in your shoes…..so I will simply say, you are in my thoughts and I hope all goes well at MDA.
Will be looking for your udpate, and hoping you hear some encouraging words during your visit .
Best,
jenny
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- November 22, 2016 at 9:14 pm
Hey Josh-
I dont have much to add to what others have said, nor have I been in your shoes…..so I will simply say, you are in my thoughts and I hope all goes well at MDA.
Will be looking for your udpate, and hoping you hear some encouraging words during your visit .
Best,
jenny
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- November 22, 2016 at 9:14 pm
Hey Josh-
I dont have much to add to what others have said, nor have I been in your shoes…..so I will simply say, you are in my thoughts and I hope all goes well at MDA.
Will be looking for your udpate, and hoping you hear some encouraging words during your visit .
Best,
jenny
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- November 23, 2016 at 1:54 am
Well I asked my questions and had a good convo with my oncologist. Basically he feels I'm benefitting from treatment based on scan/tumor metrics. We're in the midst of the battle and too early to tell. While he said additional treatment may be necessary in future we need to see what this 4th dose of ipi will do. He also said he's given patients 16 doses of ipi. I had pushed back on him with this being my 11th dose. Either way they have a plan B & C based on December scan results. He explained my body is in tug of war and we need to see it through. Unfortunately I'm just not one of those stories where you hear of immediate response and before you know it disease is gone. Also he wasn't overly concerned with neck right now. Stay the course, do scans in Dec, biopsy another sub q or two and go from there. Oh how we all love the waiting! Thanks again for being there and listening. Happy Thanksgiving!!
Josh
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- November 23, 2016 at 1:54 am
Well I asked my questions and had a good convo with my oncologist. Basically he feels I'm benefitting from treatment based on scan/tumor metrics. We're in the midst of the battle and too early to tell. While he said additional treatment may be necessary in future we need to see what this 4th dose of ipi will do. He also said he's given patients 16 doses of ipi. I had pushed back on him with this being my 11th dose. Either way they have a plan B & C based on December scan results. He explained my body is in tug of war and we need to see it through. Unfortunately I'm just not one of those stories where you hear of immediate response and before you know it disease is gone. Also he wasn't overly concerned with neck right now. Stay the course, do scans in Dec, biopsy another sub q or two and go from there. Oh how we all love the waiting! Thanks again for being there and listening. Happy Thanksgiving!!
Josh
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- November 23, 2016 at 1:54 am
Well I asked my questions and had a good convo with my oncologist. Basically he feels I'm benefitting from treatment based on scan/tumor metrics. We're in the midst of the battle and too early to tell. While he said additional treatment may be necessary in future we need to see what this 4th dose of ipi will do. He also said he's given patients 16 doses of ipi. I had pushed back on him with this being my 11th dose. Either way they have a plan B & C based on December scan results. He explained my body is in tug of war and we need to see it through. Unfortunately I'm just not one of those stories where you hear of immediate response and before you know it disease is gone. Also he wasn't overly concerned with neck right now. Stay the course, do scans in Dec, biopsy another sub q or two and go from there. Oh how we all love the waiting! Thanks again for being there and listening. Happy Thanksgiving!!
Josh
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- November 23, 2016 at 8:11 am
Josh
when I got the news my cancer was progressing I just burst in to tears right there in the clinic. So disappointing! But now I am so happy as the surgery seems to have gotten rid of it for now so the other end of the roller coaster. I hope you have an upswing really soon!!
best wishes
anne-Louise
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- November 23, 2016 at 8:11 am
Josh
when I got the news my cancer was progressing I just burst in to tears right there in the clinic. So disappointing! But now I am so happy as the surgery seems to have gotten rid of it for now so the other end of the roller coaster. I hope you have an upswing really soon!!
best wishes
anne-Louise
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- November 23, 2016 at 8:11 am
Josh
when I got the news my cancer was progressing I just burst in to tears right there in the clinic. So disappointing! But now I am so happy as the surgery seems to have gotten rid of it for now so the other end of the roller coaster. I hope you have an upswing really soon!!
best wishes
anne-Louise
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- November 23, 2016 at 5:14 pm
Dear Josh,
i am releived for you, you sound so much more positive than in your previous post… I am sure your t cells will do what they are supposed to, have faith… It's also great to hear that your team has other options should you need them, that is sooooo comforting in my opinion…
Hang in there you brave man!
Love,
Patrisa
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- November 23, 2016 at 5:14 pm
Dear Josh,
i am releived for you, you sound so much more positive than in your previous post… I am sure your t cells will do what they are supposed to, have faith… It's also great to hear that your team has other options should you need them, that is sooooo comforting in my opinion…
Hang in there you brave man!
Love,
Patrisa
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- November 23, 2016 at 5:14 pm
Dear Josh,
i am releived for you, you sound so much more positive than in your previous post… I am sure your t cells will do what they are supposed to, have faith… It's also great to hear that your team has other options should you need them, that is sooooo comforting in my opinion…
Hang in there you brave man!
Love,
Patrisa
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