› Forums › Caregiver Community › Good Morning…:))
- This topic has 53 replies, 8 voices, and was last updated 13 years, 7 months ago by
jim Breitfeller.
- Post
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- October 4, 2011 at 2:17 pm
I have to look at it that way…that every morning is…a good morning.
I just tried to set up a profile page…having registered just this morning. When my husband was first diagnosed with melanoma I found this site but I did not bookmark it…luckily I stumbled back in here somehow this morning!
In that short time…since May of just this year…it already seems like a liftetime…we have traveled far…and quickly too…on this journey.
I'm not fond of the term Caregiver… because…to me it's way more than that. I am Lisa…His Wife.
I have to look at it that way…that every morning is…a good morning.
I just tried to set up a profile page…having registered just this morning. When my husband was first diagnosed with melanoma I found this site but I did not bookmark it…luckily I stumbled back in here somehow this morning!
In that short time…since May of just this year…it already seems like a liftetime…we have traveled far…and quickly too…on this journey.
I'm not fond of the term Caregiver… because…to me it's way more than that. I am Lisa…His Wife.
I tend to ramble. I ask too many questions. I am concerned. I am afraid. Yet…at the same time…I listen. I am compassionate. I am strong.
Our journey is…for the most part…as fast as it is happening…in the beginning stages I guess. I hope to find guidance…or maybe just acceptance…along with much understanding…in this group.
I am honored to be here…and with much respect
Lisa…His Wife
- Replies
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- October 4, 2011 at 3:23 pm
Nothing wrong with coming on here, this is the best place I've found so far, to get all the answers we've wanted, that we can't always remember to ask our doctor when we see them.
I did see in your profile, he was told it was lymphoma at first, and that was the same with me, they said I had lymphoma, as they were sure the huge tumor in my head was lymphoma! Even the Brain Surgeon was shocked to find a disgusting Melanoma tumor in my head. They had us so "excited", they spoke to my parents and assured them we'd kill it all off, and I'd be fine. Well, then 2 days later, it was MELANOMA. They never told me how horrible it could be, til I got home and typed in STAGE IV MELANOMA…imagine my horror to find the statistics, and the fact that I now have an incurable cancer, one that takes many lives very quickly.
I hope all treatments go well for your husband.
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- October 4, 2011 at 3:23 pm
Nothing wrong with coming on here, this is the best place I've found so far, to get all the answers we've wanted, that we can't always remember to ask our doctor when we see them.
I did see in your profile, he was told it was lymphoma at first, and that was the same with me, they said I had lymphoma, as they were sure the huge tumor in my head was lymphoma! Even the Brain Surgeon was shocked to find a disgusting Melanoma tumor in my head. They had us so "excited", they spoke to my parents and assured them we'd kill it all off, and I'd be fine. Well, then 2 days later, it was MELANOMA. They never told me how horrible it could be, til I got home and typed in STAGE IV MELANOMA…imagine my horror to find the statistics, and the fact that I now have an incurable cancer, one that takes many lives very quickly.
I hope all treatments go well for your husband.
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- October 4, 2011 at 3:36 pm
Lisa,
I readed your husband's profile and that he is doing radiation. The rediation may kill some of the tumors cells (outer shell) but most likely won't kill the inner core. To do that he is going to need his immune system to do the work. May I suggest that instead of IL-2 as the next step, your husband try either Ipilimumab (Yervoy) or Anti-PD-1 first. If they fail, then IL-2.
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- October 4, 2011 at 3:36 pm
Lisa,
I readed your husband's profile and that he is doing radiation. The rediation may kill some of the tumors cells (outer shell) but most likely won't kill the inner core. To do that he is going to need his immune system to do the work. May I suggest that instead of IL-2 as the next step, your husband try either Ipilimumab (Yervoy) or Anti-PD-1 first. If they fail, then IL-2.
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- October 4, 2011 at 5:31 pm
Our oncologist explained to us that…in our case…he felt it was better to do the IL2 after the radiation…simply because he didn't want to put my husband's body through a treatment that would weaken him – and not have any real response. While he is still as strong as he is…with good heart and good lungs…they seem to think that the IL2 is best.
We understand that melanoma is prone to resist radiation…but in his case it seems to be the only option to get rid of any microscopic cells that remain. They have told us that they would not be able to go back in the same area and perform any more surgeries. We are holding out hope that radiation helps in this case.
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- October 4, 2011 at 5:31 pm
Our oncologist explained to us that…in our case…he felt it was better to do the IL2 after the radiation…simply because he didn't want to put my husband's body through a treatment that would weaken him – and not have any real response. While he is still as strong as he is…with good heart and good lungs…they seem to think that the IL2 is best.
We understand that melanoma is prone to resist radiation…but in his case it seems to be the only option to get rid of any microscopic cells that remain. They have told us that they would not be able to go back in the same area and perform any more surgeries. We are holding out hope that radiation helps in this case.
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- October 4, 2011 at 6:35 pm
The Yevoy or PD-1 therapy would take the suppressive T regulatory cells out of play, allowing any acivated T-cells to multipy. It has been shown that if IL-2 is added during the growth phase of the t-cells could jeopardize T-cell survival.
IL-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast,
IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells.
IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).
Best regards,
Jimmy b
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- October 4, 2011 at 6:35 pm
The Yevoy or PD-1 therapy would take the suppressive T regulatory cells out of play, allowing any acivated T-cells to multipy. It has been shown that if IL-2 is added during the growth phase of the t-cells could jeopardize T-cell survival.
IL-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast,
IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells.
IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).
Best regards,
Jimmy b
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- October 4, 2011 at 6:35 pm
The Yevoy or PD-1 therapy would take the suppressive T regulatory cells out of play, allowing any acivated T-cells to multipy. It has been shown that if IL-2 is added during the growth phase of the t-cells could jeopardize T-cell survival.
IL-2 treatment during the expansion phase was detrimental to the survival of rapidly dividing effector T cells. In contrast,
IL-2 therapy was highly beneficial during the death phase, resulting in increased proliferation and survival of Tumor-specific T cells.
IL-2 treatment also increased proliferation of resting memory T cells in the host that controlled the disease. Tumor-specific T cells in chronically infected Host also responds to IL-2 resulting in decreased tumor burden. Thus, timing of IL-2 administration and differentiation status of the T cell are critical parameters in designing IL-2 therapies (Blattman et al., 2003).
Best regards,
Jimmy b
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- October 4, 2011 at 6:43 pm
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- October 4, 2011 at 6:43 pm
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- October 4, 2011 at 6:44 pm
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- October 4, 2011 at 6:44 pm
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- October 4, 2011 at 6:44 pm
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- October 4, 2011 at 6:43 pm
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- October 4, 2011 at 11:11 pm
Jimmy,
You are a genius; however, I am not. I am truly grateful for every response you share; yet, I NEVER understand what you are saying. All this death phase, effector T cells, etc. is Greek to me. Can you please explain these things in more simplistic terms so the average (and below average…me) patients can take advantage of your advice. Again, I am in awe of your knowledge…I just don't understand it.
Thanks a million,
Tricia
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- October 5, 2011 at 1:13 am
Tricia,
I am glad you asked the question.
It is about the biology of a cell. A T-cell
Death phase : The final growth phaseof the cells, during which nutrients have been depleted and cell number decreases. One of those nutrients may be IL-2.
Effector cell :a lymphocyte (as a T cell) that has been induced to differentiate into a form (as a cytotoxic T cell) capable of mounting a specific immune response called also effector lymphocyte.
There are two kind of effector cells CD4+ and CD8+ . CD4+ are know as T Helper cells. when activated, they secrete cytokines like (IL-2). They can help activate CD8+ T-cells
T-helper cells(also known as effector T cells or Th cells) are a sub-group of lymphocytes (a type of white blood cell or leukocyte) that play an important role in establishing and maximizing the capabilities of the immune system.
A cytotoxic T cell (also known as TC, CTL, T-Killer cell, cytolytic T cell, CD8+ T-cells or killer T cell) belongs to a sub-group of T lymphocytes (a type of white blood cell) that are capable of inducing the death of infected cells or tumor cells; they kill cells that are infected with viruses (or other pathogens), or are otherwise damaged or dysfunctional
When CD-8+ T-cells are activated, they mature into (CTLs) Cytotoxic T Lymphocytes capable of distroying Melanoma Tumors.
You may want to download a paper I wrote called Melanoma and the Magic Bullet.
http://www.box.net/shared/kjgr6dkztj
It goes into great detail on the terminology of the the immune system
Another great reference for Patients is the Understanding the Immune system by NCI
http://www.cancer.gov/cancertopics/understandingcancer/immunesystem
You can download a powerpoint presentation or print it as a pdf file.
I hope this helps
warm Regards
Jimmy B
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- October 5, 2011 at 10:53 pm
Jimmy,
Thanks so much for explaining this in terms I can better understand. I really appreciate your help and will download both papers to further educate myself.
One more question…
What is the timing of IL-2 and Yervoy treatments that you have mentioned previously? Which comes first…the chicken (IL-2) or the egg (yervoy)? Also, are you more of a fan of the PD-1 now over yervoy?
I know we are all grateful that you take the time to help us with our journey, especially because you are a traveler with us! Thanks again for your help!
Tricia
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- October 6, 2011 at 12:12 am
Tricia,
First, I want to tell you that took a couple of years to become fluent in the language of translational research. I continue to learn everyday.
Now your IL2 & Yervoy question. The timing has to do with the grow cycles of the T-cells.
Yervoy takes the brakes off the immune system and allows the T-cells to grow and multiply. In doing so, the cells need a critical amount of IL-2 to be used as a nutrient.
If HD IL-2 is introduced durn the growth and expansion phase, It causes the T-cells to shut down. It has something to do with a feed back loop to control the immune response so your body doesn't go into an autoimmune response.
If you add the HD IL-2 after the the expansion (which is aproximately 49 days or 7 weeks) the IL-2 actually Acts as a growth factor which helps maintain functionality and survival of the T-cells. It also helps to activate the CD8+ T-cells into (CTLs) Cytotoxic T Lymphocytes.
So in my opinion, Doing Yervoy first makes the most sence. I have seen some patients become NED also by doing it in reverse IL-2 then Yervoy.
The problen with doing IL-2 first is, you may grow the unwanted T-regulator cells, (Tregs) which are a subset of the CD4+ T-cells (T-helper cells).
The reason I am a fan of anti-PD-1 therapy is two fold.
First, It blocks receptors on both the T-cells and the tumor itself. Limited data shows that it works better than Yervoy.
Secondly, the Drugs stays in the body a lot longer with minimal decay. (about 2 months) The halflife of the drug is longer. Also the side effects seem less.
Video on T-cell activation
http://s384.photobucket.com/albums/oo290/jimmy_b/?action=view¤t=TheImmuneResponse.mp4
I hope this helps.
Jimmy B
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- October 8, 2011 at 1:30 am
Jimmy,
Thanks so much for all of this information. I am printing it all and putting it in my files. I hope I will never need any of it, but just in case, I'll have it ready to go. Thanks again for all of your help. Just think of my posts as "Melanoma for Dummies." Have a wonderful weekend!
Tricia
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- October 8, 2011 at 1:30 am
Jimmy,
Thanks so much for all of this information. I am printing it all and putting it in my files. I hope I will never need any of it, but just in case, I'll have it ready to go. Thanks again for all of your help. Just think of my posts as "Melanoma for Dummies." Have a wonderful weekend!
Tricia
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- October 8, 2011 at 2:25 am
Tricia ,
We are on a learning curve, I just started a little earlier then you. We are all Here to educate ourselves.
Take care
Jimmy B
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- October 8, 2011 at 2:25 am
Tricia ,
We are on a learning curve, I just started a little earlier then you. We are all Here to educate ourselves.
Take care
Jimmy B
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- October 8, 2011 at 2:25 am
Tricia ,
We are on a learning curve, I just started a little earlier then you. We are all Here to educate ourselves.
Take care
Jimmy B
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- October 8, 2011 at 1:30 am
Jimmy,
Thanks so much for all of this information. I am printing it all and putting it in my files. I hope I will never need any of it, but just in case, I'll have it ready to go. Thanks again for all of your help. Just think of my posts as "Melanoma for Dummies." Have a wonderful weekend!
Tricia
-
- October 6, 2011 at 12:12 am
Tricia,
First, I want to tell you that took a couple of years to become fluent in the language of translational research. I continue to learn everyday.
Now your IL2 & Yervoy question. The timing has to do with the grow cycles of the T-cells.
Yervoy takes the brakes off the immune system and allows the T-cells to grow and multiply. In doing so, the cells need a critical amount of IL-2 to be used as a nutrient.
If HD IL-2 is introduced durn the growth and expansion phase, It causes the T-cells to shut down. It has something to do with a feed back loop to control the immune response so your body doesn't go into an autoimmune response.
If you add the HD IL-2 after the the expansion (which is aproximately 49 days or 7 weeks) the IL-2 actually Acts as a growth factor which helps maintain functionality and survival of the T-cells. It also helps to activate the CD8+ T-cells into (CTLs) Cytotoxic T Lymphocytes.
So in my opinion, Doing Yervoy first makes the most sence. I have seen some patients become NED also by doing it in reverse IL-2 then Yervoy.
The problen with doing IL-2 first is, you may grow the unwanted T-regulator cells, (Tregs) which are a subset of the CD4+ T-cells (T-helper cells).
The reason I am a fan of anti-PD-1 therapy is two fold.
First, It blocks receptors on both the T-cells and the tumor itself. Limited data shows that it works better than Yervoy.
Secondly, the Drugs stays in the body a lot longer with minimal decay. (about 2 months) The halflife of the drug is longer. Also the side effects seem less.
Video on T-cell activation
http://s384.photobucket.com/albums/oo290/jimmy_b/?action=view¤t=TheImmuneResponse.mp4
I hope this helps.
Jimmy B
-
- October 6, 2011 at 12:12 am
Tricia,
First, I want to tell you that took a couple of years to become fluent in the language of translational research. I continue to learn everyday.
Now your IL2 & Yervoy question. The timing has to do with the grow cycles of the T-cells.
Yervoy takes the brakes off the immune system and allows the T-cells to grow and multiply. In doing so, the cells need a critical amount of IL-2 to be used as a nutrient.
If HD IL-2 is introduced durn the growth and expansion phase, It causes the T-cells to shut down. It has something to do with a feed back loop to control the immune response so your body doesn't go into an autoimmune response.
If you add the HD IL-2 after the the expansion (which is aproximately 49 days or 7 weeks) the IL-2 actually Acts as a growth factor which helps maintain functionality and survival of the T-cells. It also helps to activate the CD8+ T-cells into (CTLs) Cytotoxic T Lymphocytes.
So in my opinion, Doing Yervoy first makes the most sence. I have seen some patients become NED also by doing it in reverse IL-2 then Yervoy.
The problen with doing IL-2 first is, you may grow the unwanted T-regulator cells, (Tregs) which are a subset of the CD4+ T-cells (T-helper cells).
The reason I am a fan of anti-PD-1 therapy is two fold.
First, It blocks receptors on both the T-cells and the tumor itself. Limited data shows that it works better than Yervoy.
Secondly, the Drugs stays in the body a lot longer with minimal decay. (about 2 months) The halflife of the drug is longer. Also the side effects seem less.
Video on T-cell activation
http://s384.photobucket.com/albums/oo290/jimmy_b/?action=view¤t=TheImmuneResponse.mp4
I hope this helps.
Jimmy B
-
- October 5, 2011 at 10:53 pm
Jimmy,
Thanks so much for explaining this in terms I can better understand. I really appreciate your help and will download both papers to further educate myself.
One more question…
What is the timing of IL-2 and Yervoy treatments that you have mentioned previously? Which comes first…the chicken (IL-2) or the egg (yervoy)? Also, are you more of a fan of the PD-1 now over yervoy?
I know we are all grateful that you take the time to help us with our journey, especially because you are a traveler with us! Thanks again for your help!
Tricia
-
- October 5, 2011 at 10:53 pm
Jimmy,
Thanks so much for explaining this in terms I can better understand. I really appreciate your help and will download both papers to further educate myself.
One more question…
What is the timing of IL-2 and Yervoy treatments that you have mentioned previously? Which comes first…the chicken (IL-2) or the egg (yervoy)? Also, are you more of a fan of the PD-1 now over yervoy?
I know we are all grateful that you take the time to help us with our journey, especially because you are a traveler with us! Thanks again for your help!
Tricia
-
- October 5, 2011 at 1:13 am
Tricia,
I am glad you asked the question.
It is about the biology of a cell. A T-cell
Death phase : The final growth phaseof the cells, during which nutrients have been depleted and cell number decreases. One of those nutrients may be IL-2.
Effector cell :a lymphocyte (as a T cell) that has been induced to differentiate into a form (as a cytotoxic T cell) capable of mounting a specific immune response called also effector lymphocyte.
There are two kind of effector cells CD4+ and CD8+ . CD4+ are know as T Helper cells. when activated, they secrete cytokines like (IL-2). They can help activate CD8+ T-cells
T-helper cells(also known as effector T cells or Th cells) are a sub-group of lymphocytes (a type of white blood cell or leukocyte) that play an important role in establishing and maximizing the capabilities of the immune system.
A cytotoxic T cell (also known as TC, CTL, T-Killer cell, cytolytic T cell, CD8+ T-cells or killer T cell) belongs to a sub-group of T lymphocytes (a type of white blood cell) that are capable of inducing the death of infected cells or tumor cells; they kill cells that are infected with viruses (or other pathogens), or are otherwise damaged or dysfunctional
When CD-8+ T-cells are activated, they mature into (CTLs) Cytotoxic T Lymphocytes capable of distroying Melanoma Tumors.
You may want to download a paper I wrote called Melanoma and the Magic Bullet.
http://www.box.net/shared/kjgr6dkztj
It goes into great detail on the terminology of the the immune system
Another great reference for Patients is the Understanding the Immune system by NCI
http://www.cancer.gov/cancertopics/understandingcancer/immunesystem
You can download a powerpoint presentation or print it as a pdf file.
I hope this helps
warm Regards
Jimmy B
-
- October 5, 2011 at 1:13 am
Tricia,
I am glad you asked the question.
It is about the biology of a cell. A T-cell
Death phase : The final growth phaseof the cells, during which nutrients have been depleted and cell number decreases. One of those nutrients may be IL-2.
Effector cell :a lymphocyte (as a T cell) that has been induced to differentiate into a form (as a cytotoxic T cell) capable of mounting a specific immune response called also effector lymphocyte.
There are two kind of effector cells CD4+ and CD8+ . CD4+ are know as T Helper cells. when activated, they secrete cytokines like (IL-2). They can help activate CD8+ T-cells
T-helper cells(also known as effector T cells or Th cells) are a sub-group of lymphocytes (a type of white blood cell or leukocyte) that play an important role in establishing and maximizing the capabilities of the immune system.
A cytotoxic T cell (also known as TC, CTL, T-Killer cell, cytolytic T cell, CD8+ T-cells or killer T cell) belongs to a sub-group of T lymphocytes (a type of white blood cell) that are capable of inducing the death of infected cells or tumor cells; they kill cells that are infected with viruses (or other pathogens), or are otherwise damaged or dysfunctional
When CD-8+ T-cells are activated, they mature into (CTLs) Cytotoxic T Lymphocytes capable of distroying Melanoma Tumors.
You may want to download a paper I wrote called Melanoma and the Magic Bullet.
http://www.box.net/shared/kjgr6dkztj
It goes into great detail on the terminology of the the immune system
Another great reference for Patients is the Understanding the Immune system by NCI
http://www.cancer.gov/cancertopics/understandingcancer/immunesystem
You can download a powerpoint presentation or print it as a pdf file.
I hope this helps
warm Regards
Jimmy B
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- October 7, 2011 at 6:36 am
Tricia,
I think the main thing to get from Jimmy's IPI/IL-2 information is that there is a certain timing that is important in the sequence of events. The exact meaning of each of the terms is something that we may have problems remembering, but as long as we get the basic idea, we can present Jimmy's data to our Onc's and look at the scheduling for the timing of the events the Onc's proposing.
We don't all have Jimmy's background for being able to readily assimulate many of the details, but it is grat to hve his input. I provide much of it to my Onc's.
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- October 7, 2011 at 6:36 am
Tricia,
I think the main thing to get from Jimmy's IPI/IL-2 information is that there is a certain timing that is important in the sequence of events. The exact meaning of each of the terms is something that we may have problems remembering, but as long as we get the basic idea, we can present Jimmy's data to our Onc's and look at the scheduling for the timing of the events the Onc's proposing.
We don't all have Jimmy's background for being able to readily assimulate many of the details, but it is grat to hve his input. I provide much of it to my Onc's.
-
- October 7, 2011 at 6:36 am
Tricia,
I think the main thing to get from Jimmy's IPI/IL-2 information is that there is a certain timing that is important in the sequence of events. The exact meaning of each of the terms is something that we may have problems remembering, but as long as we get the basic idea, we can present Jimmy's data to our Onc's and look at the scheduling for the timing of the events the Onc's proposing.
We don't all have Jimmy's background for being able to readily assimulate many of the details, but it is grat to hve his input. I provide much of it to my Onc's.
-
- October 4, 2011 at 11:11 pm
Jimmy,
You are a genius; however, I am not. I am truly grateful for every response you share; yet, I NEVER understand what you are saying. All this death phase, effector T cells, etc. is Greek to me. Can you please explain these things in more simplistic terms so the average (and below average…me) patients can take advantage of your advice. Again, I am in awe of your knowledge…I just don't understand it.
Thanks a million,
Tricia
-
- October 4, 2011 at 11:11 pm
Jimmy,
You are a genius; however, I am not. I am truly grateful for every response you share; yet, I NEVER understand what you are saying. All this death phase, effector T cells, etc. is Greek to me. Can you please explain these things in more simplistic terms so the average (and below average…me) patients can take advantage of your advice. Again, I am in awe of your knowledge…I just don't understand it.
Thanks a million,
Tricia
-
- October 5, 2011 at 2:15 am
Lisa,
I shall check out your profile. I, too, am the wife, the caregiver. My husband was diagnosed Stage IV in April with spread in lungs, liver, and bone. His cancer has been categorized as "extremely aggressive" by our mel specialist. Luckily, he had a phenomenal response to some chemotherapy and I firmly believe that's why he's still with us. He's on Zelboraf now, and I really do feel that every day he's still here is a good day, because already we have beat the odds.
I read your post and it resonated a lot with me; I could completely relate to it. It's a whirlwind tour of a place you never wanted to see…but it certainly does help knowing you are not travelling that path alone.
This site is really a wonderful, supportive place. A place to belong, where people just understand.
There are several other caregivers who come here relatively regularly. I hope they will also chime in on your thread to let you know that you are definitely not alone!
Michelle, wife of Don
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- October 5, 2011 at 2:15 am
Lisa,
I shall check out your profile. I, too, am the wife, the caregiver. My husband was diagnosed Stage IV in April with spread in lungs, liver, and bone. His cancer has been categorized as "extremely aggressive" by our mel specialist. Luckily, he had a phenomenal response to some chemotherapy and I firmly believe that's why he's still with us. He's on Zelboraf now, and I really do feel that every day he's still here is a good day, because already we have beat the odds.
I read your post and it resonated a lot with me; I could completely relate to it. It's a whirlwind tour of a place you never wanted to see…but it certainly does help knowing you are not travelling that path alone.
This site is really a wonderful, supportive place. A place to belong, where people just understand.
There are several other caregivers who come here relatively regularly. I hope they will also chime in on your thread to let you know that you are definitely not alone!
Michelle, wife of Don
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- October 5, 2011 at 2:15 am
Lisa,
I shall check out your profile. I, too, am the wife, the caregiver. My husband was diagnosed Stage IV in April with spread in lungs, liver, and bone. His cancer has been categorized as "extremely aggressive" by our mel specialist. Luckily, he had a phenomenal response to some chemotherapy and I firmly believe that's why he's still with us. He's on Zelboraf now, and I really do feel that every day he's still here is a good day, because already we have beat the odds.
I read your post and it resonated a lot with me; I could completely relate to it. It's a whirlwind tour of a place you never wanted to see…but it certainly does help knowing you are not travelling that path alone.
This site is really a wonderful, supportive place. A place to belong, where people just understand.
There are several other caregivers who come here relatively regularly. I hope they will also chime in on your thread to let you know that you are definitely not alone!
Michelle, wife of Don
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- October 5, 2011 at 1:01 pm
Hi Lisa – welcome, glad you found this forum. You'll find many things here from a group of really wonderful people – all the technical and emotional support you wil need. I am a caregiver (it matters little to me what the label is – the reality is that is a key role I play) and a husband. You can look at my profile to see what my wife's path has been. I also have a blog that describes a lot of the process and issues you might face, you may find it helpful. My wife has gone through it all – radiation (of all kinds), surgery, chemo, immunotherapy – and has tumors just about everywhere.
I wish you the very best on this journey.
Nick
cancercabanaboy.blogspot.com
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- October 5, 2011 at 1:01 pm
Hi Lisa – welcome, glad you found this forum. You'll find many things here from a group of really wonderful people – all the technical and emotional support you wil need. I am a caregiver (it matters little to me what the label is – the reality is that is a key role I play) and a husband. You can look at my profile to see what my wife's path has been. I also have a blog that describes a lot of the process and issues you might face, you may find it helpful. My wife has gone through it all – radiation (of all kinds), surgery, chemo, immunotherapy – and has tumors just about everywhere.
I wish you the very best on this journey.
Nick
cancercabanaboy.blogspot.com
-
- October 5, 2011 at 1:01 pm
Hi Lisa – welcome, glad you found this forum. You'll find many things here from a group of really wonderful people – all the technical and emotional support you wil need. I am a caregiver (it matters little to me what the label is – the reality is that is a key role I play) and a husband. You can look at my profile to see what my wife's path has been. I also have a blog that describes a lot of the process and issues you might face, you may find it helpful. My wife has gone through it all – radiation (of all kinds), surgery, chemo, immunotherapy – and has tumors just about everywhere.
I wish you the very best on this journey.
Nick
cancercabanaboy.blogspot.com
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- October 5, 2011 at 10:31 pm
Lisa–His wife.
I have one basic comment about your dislike of the title "Caregiver". There are many people that come here that, while having a wife or husband, do not have a real "CAREGIVER" That is an honored term as the term "Wife or husband should be, but isn't always. There are some here that are neither spouses, nor lovers that are highly respected caregivers still. It is totally great that you are both. This makes your husband a lucky man!
There are/were some, like our beloved NicOz, whose husband decided to leave the stress, wife and his daughter behind and go his separate way. To combine both the terms into one as you have done is awesome.
You are very welcome her and are appreciated by more than just your husband. How can you ask too many questions in learning about this disease? Learning is the best chance for both of you!
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- October 5, 2011 at 10:31 pm
Lisa–His wife.
I have one basic comment about your dislike of the title "Caregiver". There are many people that come here that, while having a wife or husband, do not have a real "CAREGIVER" That is an honored term as the term "Wife or husband should be, but isn't always. There are some here that are neither spouses, nor lovers that are highly respected caregivers still. It is totally great that you are both. This makes your husband a lucky man!
There are/were some, like our beloved NicOz, whose husband decided to leave the stress, wife and his daughter behind and go his separate way. To combine both the terms into one as you have done is awesome.
You are very welcome her and are appreciated by more than just your husband. How can you ask too many questions in learning about this disease? Learning is the best chance for both of you!
-
- October 5, 2011 at 10:31 pm
Lisa–His wife.
I have one basic comment about your dislike of the title "Caregiver". There are many people that come here that, while having a wife or husband, do not have a real "CAREGIVER" That is an honored term as the term "Wife or husband should be, but isn't always. There are some here that are neither spouses, nor lovers that are highly respected caregivers still. It is totally great that you are both. This makes your husband a lucky man!
There are/were some, like our beloved NicOz, whose husband decided to leave the stress, wife and his daughter behind and go his separate way. To combine both the terms into one as you have done is awesome.
You are very welcome her and are appreciated by more than just your husband. How can you ask too many questions in learning about this disease? Learning is the best chance for both of you!
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- October 6, 2011 at 11:07 am
Hi Lisa. I'm glad you found this board again. The info and support you get here is amazing. I've been coming here since my husband Dave was diagnosed in 2008. Any questions I have asked, whether technical or emotional in nature, I have received good advice. I for one am so thankful for this board –
I can agree with your "we" mentality. I fight this disease alongside him, and have a tendency to say "we" alot. I guess that happens after being together so long – maybe even the reason we have been. He has never complained about me taking care of him too much, or finding too much information – so I guess I'm on the right path.
Although you are probably sick of hearing it, stay strong. The two of you will get through this together.
Best wishes,
Maria (Wife of Dave, stage IV)
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- October 6, 2011 at 11:07 am
Hi Lisa. I'm glad you found this board again. The info and support you get here is amazing. I've been coming here since my husband Dave was diagnosed in 2008. Any questions I have asked, whether technical or emotional in nature, I have received good advice. I for one am so thankful for this board –
I can agree with your "we" mentality. I fight this disease alongside him, and have a tendency to say "we" alot. I guess that happens after being together so long – maybe even the reason we have been. He has never complained about me taking care of him too much, or finding too much information – so I guess I'm on the right path.
Although you are probably sick of hearing it, stay strong. The two of you will get through this together.
Best wishes,
Maria (Wife of Dave, stage IV)
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- October 6, 2011 at 11:07 am
Hi Lisa. I'm glad you found this board again. The info and support you get here is amazing. I've been coming here since my husband Dave was diagnosed in 2008. Any questions I have asked, whether technical or emotional in nature, I have received good advice. I for one am so thankful for this board –
I can agree with your "we" mentality. I fight this disease alongside him, and have a tendency to say "we" alot. I guess that happens after being together so long – maybe even the reason we have been. He has never complained about me taking care of him too much, or finding too much information – so I guess I'm on the right path.
Although you are probably sick of hearing it, stay strong. The two of you will get through this together.
Best wishes,
Maria (Wife of Dave, stage IV)
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Tagged: caregiver
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