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Mike49
dianetavegia
Posts: 1953
Joined: Mar 2009
Dec 29, 2009 - 5:31 pm
Hi Mike, I haven't seen any update on you for a couple of months and then saw your reply to John saying no chemo is working for you. Are you okay, my friend?
Mike - you always told me "dry socks and warm chow" remember?
I hate to hear that the chemo is not working for you - there is so much about this disease that we all simply do not understand - why this works for one and not another and vice versa. I wish there were something comforting that I could tell you right now.
For now, I just wanted to offer you my love and support and hope that something gets things rolling the other way in 2010!
You've always been very supportive of me and I just want you to know that I have not forgotten about you either.
Just want you to know that I am praying for you and your precious family. Please let us know how you're doing and if there is anything we can do for you.
I'm sorry to hear nothing is working yet. Here are some things you might could research and consider. DCA with or without THM.
Ask Lisa about Neoplas. There are half a dozen really good clinical trials going on, olaparib and fostamatinib would be my first two choices.
You're right about getting your cancer oncotyped though. If your cancer isn't responding to conventional treatment then you might have a cancer that is genetically similar to some other cancer. I've been doing a bunch of research. I can't find anything specific but from my reading I'm getting the impression that many colon cancers are genetically similar to breast cancers.
Also, see if you can get your Dr to prescribe you the maximum dosage of Lovastatin. I've read several articles and studies from a decade ago that showed lovastatin improves the patients response to 5fu. This may help with your current drug treatment.
This is Mike's wife Jenny, I wanted to give you an update on Mike. As you know his cancer has been refractory to all traditional chemotherapy recommended for colon cancer. We recently discovered that the cancer had spread to his duodenum and was obstructing his small intestine. In addition the mets to the liver have increased in size and caused very serious liver complications. He has experienced a rapid decline in health in the past six weeks and has decided to go on hospice care. He decided he wanted to spend the remainder of his time at home and as comfortable as possible. I am taking care of him at home with the help of Hospice of the Valley. He is very weak most of the time and does not have the energy to interact with the discussion board.
Please don't be discouraged because Mike's story does not have to be your story! I think of you all often and hope for a cure from this cruel and senseless disease. I hope you will all be NED soon and wish you luck in your fight!
and Jenny, thank you so much for allowing us to be part of Mike and your families life. Understandable how tough this is to us all especially your family, and know that anything at all you need please don't hesitate to ask. Love and Hope, Clift
So sorry to hear of his decline and that nothing is working for him and also that his cancer has spread so quickly. Please let him know that he is thought of with kindness and a very brave person.
I had one of those mornings where I woke up and threw chlothes on to keep warm and immediately logged onto the board before doing anything.
And the first thing I saw was this post - and it hit me very hard as I tried to clear the cobwebs out of my mind in reading this.
I am HEARTBROKEN! I've always liked Mike and he's been a good friend and a nice guy to me always.
I suppose since joining the board, that I've developed this "shield of naievete" that all of my friends are going to come through this OK and nothing bad will happen to the people I know - that others might not make it, but certainly not my friends. I think that is because the hurt is so great to think that one of us will not be with here with us and their families.
I know the reality is quite different as I am a rational man. The difference to me is that I've become closely attached to so many friends here, that I just deny that something can go wrong - just a self protection mechanism to keep me sane. 'Cause it just pains me that people I know could possibly not be here one day. This is a new one for me - I've watched people pass away at my old cancer center and could acknowledge it, but it became different when I came here to the board - again, I get attached...I'm the type of person that is "In for a Penny - In for a Pound." There is no in between with me...if I love or like, then it is deeply, I just don't know another way and don't want to know another way.
Please tell Mike from me these words:
"DRY SOCKS and WARM CHOW" - from his friend Craig in Texas. He'll know what it means.
I'm starting to cry now and getting emotional, so I'll just sign off. I'm going to think about Mike often and I'll still hold out hope that he'll get better, but I understand the realities from your post, so I'll prepare myself.
I hope that he is comfortable and glad he is at home - if I had a wish it would be to leave this life at my home as well.
Thank you, Jenny, so much for you update on Mike - he's a brave man who's now inspiring me with his courage and bravery in the face of a terrible adversary - may the Gates of Heaven swing wide open upon his arrival.
And I want to also thank you as his CareGiver for all of your love and all you are doing for him right now - you are simply the best.
My husband is in the same horrible situation as Mike and his name is also Mike. He was diagnosed in August and his cancer has progressed very quickly. His bilirubin was at 28 last week and his liver is not functioning. He has a pleurx catheter in his abdomin which I drain everyday. His health has declined very rapidly over the last few weeks and I will have hospice start coming next week. I am at a loss. This has happened over 5 months and I just came to grips with the fact that he has cancer and now I have to try to wrap my head around living without him. This disease is miserable.
My heart goes out to you. Please feel free to contact me if you need someone to share with.
I am also the wife of a stage 4 survivor and although my husband David is doing well right now, we all know what this horrible disease can do. Please know that there are so many on this board that care, and I pray you and Mike have precious time together. My heart breaks when I hear how quickly so many progress. Please take care, Jerryl.
I am very sorry to hear that your husband's health has declined as well. You are right, it is a miserable disease. I hate cancer and I pray for a cure. I understand all to well what you are going through. It is a sad lonely place to be. Contact me any time you need someone to talk to as well.
I am thinking of you and your beautiful family during this difficult time. Please take care of yourself (as best as possible) as you are going to need as much strength as you can muster to get through. Please feel free to PM me with any thoughts or questions...as sadly I understand the path you are on all too well.
Melissa
I am so sorry to learn that Mike is struggling. He has been a huge positive influence to so many on this board. Please know that there are lots of people who care and hope for the best for you and for Mike and your precious family.
HI Jenny,
I am so sorry to hear that Mike is not doing so well. Please know I will be praying for you, Mike and your family. God is there with him and will not leave him ever. God give you peace
love Jill
Your husband was a HUGE inspiration to me, when I first joined this board he gave me such great advice and encouragement. I have read his posts and just adore and admire his attitude towards life.
I am so sorry to hear about his decline. It is sooo very sad. It is a very cruel disease indeed and I struggle with understanding why we do not have better treatment options.
Mike and your family are in my prayers. And thank you for sending a message of hope to everyone else.
Marie
This news saddens me so very much. I am so sorry that things are not working out, I will continue to pray for Mike and your family. Thank you for letting us know how he is doing and please continue to do so if you dont mind. Let us know if there is anything we might be able to do for you as well. Stay strong as best you can! God Bless you
I am really sorry that Mike's health has declined. I am thinking a lot about him, and you & your family as well. Thank-you for letting us know; you must have your hands full. Please take good care of yourself.
I read Mike all of the responses on the board and it made him smile. He really appreciated everyone's kind words. Thank you all very much. You have all been a great source of support for Mike since he joined the discussion board. We wish you the best of luck and we are rooting for everyone!
Please give my love to Mike. He, Mensright and I all joined this board at the same time. Mike has always been so encouraging to me. It's actually taken me a couple of days to even respond to this post. It's hard to tell you what I am feeling right now, but know that I am praying for Mike, you and the family. If there is anything I can do, please PM me.
Mike was diagnosed only a few months before me and was quick to befriend me and make me feel welcome. He had such a positive outlook on things. It breaks my heart to know he's not going to make it but I really appreciate you letting us know. Not knowing is agonizing.
I'll be praying for all of you during this time and hope Mike is not in pain.
For those who don't know Mike, here is a link to his intro to the group: Read Mike's Intro Here
very saddened to hear this, Jenny, and know that he is our brother and we will all be together one day. Your family will be in my prayers, he is a special person, always positive and sweet, and stuff like this really hurts and gets me down, once the disease gets worse. You always wish for 2nd and 3rd opinions, but then again, after awhile, people get sick of the fight, and do NOT give up, but just want to be free. I'm sure I'll be there one day, and know when it's time to stop. I hope he is not suffering, and please give him hugsss for me!
Dear Mike and Jenny,
You and your beautiful family are in my prayers. Mike, you have been such support to me (and Dick) during our time on the board. I hope and pray that your family has some peaceful time together.
Jenny, I will hold you in prayer during this time. Even though Mike can't post, please know we will all be with you in thoughts and prayer.
With aloha,
Kathleen
Thank you so much for updating us on Mike..Caregivers are very important in our lives. You have been there for him through all of this and I know even if he doesn't say it much that it means alot ..It is a horrible monster and I am so very sorry that Mike has declined..Please tell him we all love him and he is in our prayers as you are also. Its so hard to see a love one decline in health. Know that we are here for you to keep posting to us because as you already know talking to our little family here does help alot.....I will be thinking and praying for both of you...JULIE
Thank you so much for updating us on Mike..Caregivers are very important in our lives. You have been there for him through all of this and I know even if he doesn't say it much that it means alot ..It is a horrible monster and I am so very sorry that Mike has declined..Please tell him we all love him and he is in our prayers as you are also. Its so hard to see a love one decline in health. Know that we are here for you to keep posting to us because as you already know talking to our little family here does help alot.....I will be thinking and praying for both of you...JULIE
I am so terribly sorry to hear of Mike's situation and your entire family's as well. Please know that you are all in my prayers. I hope and pray that he's not in pain.
Sandy
I like to see who I'm praying for and Mike is my friend on Facebook. I'm trying to post a link to his profile picture in case you'd like to see a larger picture than he has here.
Jenny, Please let Mike know we are still with him and you and the family. I think about each of you each day and say a silent prayer for peace and strength in your home...Hope and Love, Clift
Jenny and Mike,
Like the others, I continue to think about your family and pray for you through out the day. I hope you have moments of peace in your home right now,
Joined: Jan 2009
Thanks for posting
Diane,
Thanks for posting this and letting Mike know we miss him.
Mike,
We are thinking of you and saying a prayer.
Aloha,
Kathleen
Joined: Jun 2009
Mike
Good eye, Diane
Mike - you always told me "dry socks and warm chow" remember?
I hate to hear that the chemo is not working for you - there is so much about this disease that we all simply do not understand - why this works for one and not another and vice versa. I wish there were something comforting that I could tell you right now.
For now, I just wanted to offer you my love and support and hope that something gets things rolling the other way in 2010!
You've always been very supportive of me and I just want you to know that I have not forgotten about you either.
-Craig
Joined: Jun 2009
Prayers
Dear Mike,
Just want you to know that I am praying for you and your precious family. Please let us know how you're doing and if there is anything we can do for you.
God Bless You,
Debbie (gramma)
Joined: Mar 2009
Caris Dx
I'm sorry to hear nothing is working yet. Here are some things you might could research and consider. DCA with or without THM.
Ask Lisa about Neoplas. There are half a dozen really good clinical trials going on, olaparib and fostamatinib would be my first two choices.
You're right about getting your cancer oncotyped though. If your cancer isn't responding to conventional treatment then you might have a cancer that is genetically similar to some other cancer. I've been doing a bunch of research. I can't find anything specific but from my reading I'm getting the impression that many colon cancers are genetically similar to breast cancers.
Also, see if you can get your Dr to prescribe you the maximum dosage of Lovastatin. I've read several articles and studies from a decade ago that showed lovastatin improves the patients response to 5fu. This may help with your current drug treatment.
Joined: Nov 2008
Update on Mike49
This is Mike's wife Jenny, I wanted to give you an update on Mike. As you know his cancer has been refractory to all traditional chemotherapy recommended for colon cancer. We recently discovered that the cancer had spread to his duodenum and was obstructing his small intestine. In addition the mets to the liver have increased in size and caused very serious liver complications. He has experienced a rapid decline in health in the past six weeks and has decided to go on hospice care. He decided he wanted to spend the remainder of his time at home and as comfortable as possible. I am taking care of him at home with the help of Hospice of the Valley. He is very weak most of the time and does not have the energy to interact with the discussion board.
Please don't be discouraged because Mike's story does not have to be your story! I think of you all often and hope for a cure from this cruel and senseless disease. I hope you will all be NED soon and wish you luck in your fight!
Joined: Aug 2008
Let him know that we love you all............
and Jenny, thank you so much for allowing us to be part of Mike and your families life. Understandable how tough this is to us all especially your family, and know that anything at all you need please don't hesitate to ask. Love and Hope, Clift
Joined: Feb 2009
So Very Sorry
So sorry to hear of his decline and that nothing is working for him and also that his cancer has spread so quickly. Please let him know that he is thought of with kindness and a very brave person.
Kim
Joined: Jun 2009
PM me anytime
Hi Jenny.. I'm sure happy that Mike is home with his family and friends. Send him our love!!!
Brooks
Joined: Jun 2009
Mike the Angel
Dear Jenny
I had one of those mornings where I woke up and threw chlothes on to keep warm and immediately logged onto the board before doing anything.
And the first thing I saw was this post - and it hit me very hard as I tried to clear the cobwebs out of my mind in reading this.
I am HEARTBROKEN! I've always liked Mike and he's been a good friend and a nice guy to me always.
I suppose since joining the board, that I've developed this "shield of naievete" that all of my friends are going to come through this OK and nothing bad will happen to the people I know - that others might not make it, but certainly not my friends. I think that is because the hurt is so great to think that one of us will not be with here with us and their families.
I know the reality is quite different as I am a rational man. The difference to me is that I've become closely attached to so many friends here, that I just deny that something can go wrong - just a self protection mechanism to keep me sane. 'Cause it just pains me that people I know could possibly not be here one day. This is a new one for me - I've watched people pass away at my old cancer center and could acknowledge it, but it became different when I came here to the board - again, I get attached...I'm the type of person that is "In for a Penny - In for a Pound." There is no in between with me...if I love or like, then it is deeply, I just don't know another way and don't want to know another way.
Please tell Mike from me these words:
"DRY SOCKS and WARM CHOW" - from his friend Craig in Texas. He'll know what it means.
I'm starting to cry now and getting emotional, so I'll just sign off. I'm going to think about Mike often and I'll still hold out hope that he'll get better, but I understand the realities from your post, so I'll prepare myself.
I hope that he is comfortable and glad he is at home - if I had a wish it would be to leave this life at my home as well.
Thank you, Jenny, so much for you update on Mike - he's a brave man who's now inspiring me with his courage and bravery in the face of a terrible adversary - may the Gates of Heaven swing wide open upon his arrival.
And I want to also thank you as his CareGiver for all of your love and all you are doing for him right now - you are simply the best.
God Bless YOU BOTH!!!
-Craig
Joined: Nov 2008
Dry socks and warm chow
I read Mike your message and it brought a smile to his face. Thank you so much for the kind words. He really appreciated it. God bless you!
Jenny
Joined: Feb 2008
So sad
Jenny,
It breaks my heart to read this. Mike has always been so kind and friendly here, and we will all miss his posts.
I'm glad you have hospice there to help you, because I've heard they can be so comforting to the family as well as the patient.
Please give Mike my love and let him know that we're all thinking of him and praying for him. I'm praying for you, as well.
*hugs*
Gail
Joined: Dec 2009
You're all in my thoughts
You're all in my thoughts and prayers.
Joined: Jul 2009
oh man, I am so sorry Please
oh man, I am so sorry
Please know that we are holding you guys close in prayer. Hugs to your beautiful children!
Joined: Sep 2009
Jenny
Jenny
My husband is in the same horrible situation as Mike and his name is also Mike. He was diagnosed in August and his cancer has progressed very quickly. His bilirubin was at 28 last week and his liver is not functioning. He has a pleurx catheter in his abdomin which I drain everyday. His health has declined very rapidly over the last few weeks and I will have hospice start coming next week. I am at a loss. This has happened over 5 months and I just came to grips with the fact that he has cancer and now I have to try to wrap my head around living without him. This disease is miserable.
My heart goes out to you. Please feel free to contact me if you need someone to share with.
Please take care.
Jerryl
Joined: Jul 2008
So sorry Jerryl
I am also the wife of a stage 4 survivor and although my husband David is doing well right now, we all know what this horrible disease can do. Please know that there are so many on this board that care, and I pray you and Mike have precious time together. My heart breaks when I hear how quickly so many progress. Please take care, Jerryl.
Priscilla
Joined: Nov 2008
My heart goes out to you as well.
I am very sorry to hear that your husband's health has declined as well. You are right, it is a miserable disease. I hate cancer and I pray for a cure. I understand all to well what you are going through. It is a sad lonely place to be. Contact me any time you need someone to talk to as well.
Take care,
Jenny
Joined: Sep 2009
so sorry
I am thinking of you and your beautiful family during this difficult time. Please take care of yourself (as best as possible) as you are going to need as much strength as you can muster to get through. Please feel free to PM me with any thoughts or questions...as sadly I understand the path you are on all too well.
Melissa
Joined: Jul 2008
sending you prayers
I am so sorry to learn that Mike is struggling. He has been a huge positive influence to so many on this board. Please know that there are lots of people who care and hope for the best for you and for Mike and your precious family.
Priscilla
Joined: Mar 2008
Take care of yourself while you are taking care of Mike
HI Jenny,
I am so sorry to hear that Mike is not doing so well. Please know I will be praying for you, Mike and your family. God is there with him and will not leave him ever. God give you peace
love Jill
Joined: Aug 2009
Jenny
Your husband was a HUGE inspiration to me, when I first joined this board he gave me such great advice and encouragement. I have read his posts and just adore and admire his attitude towards life.
I am so sorry to hear about his decline. It is sooo very sad. It is a very cruel disease indeed and I struggle with understanding why we do not have better treatment options.
Mike and your family are in my prayers. And thank you for sending a message of hope to everyone else.
Marie
Joined: May 2008
Jenny and Mike
I'm so sad to hear this news, and am holding you both and your kids in my heart.
Much love, Leslie
Joined: Jul 2007
Please give him my love
This news saddens me so very much. I am so sorry that things are not working out, I will continue to pray for Mike and your family. Thank you for letting us know how he is doing and please continue to do so if you dont mind. Let us know if there is anything we might be able to do for you as well. Stay strong as best you can! God Bless you
Beth
Joined: Sep 2009
Praying
I will keep Mike in my Prayers, also, I will keep you and your family, because I am sure you need the support of Prayers. God Bless. Margaret
Joined: Oct 2009
Jenny, I am really sorry
Jenny,
I am really sorry that Mike's health has declined. I am thinking a lot about him, and you & your family as well. Thank-you for letting us know; you must have your hands full. Please take good care of yourself.
Joined: Nov 2008
Thank you all
I read Mike all of the responses on the board and it made him smile. He really appreciated everyone's kind words. Thank you all very much. You have all been a great source of support for Mike since he joined the discussion board. We wish you the best of luck and we are rooting for everyone!
Sincerely,
Jenny
Joined: Oct 2008
Jenny
Please give my love to Mike. He, Mensright and I all joined this board at the same time. Mike has always been so encouraging to me. It's actually taken me a couple of days to even respond to this post. It's hard to tell you what I am feeling right now, but know that I am praying for Mike, you and the family. If there is anything I can do, please PM me.
Many hugs and lots of prayers, Vicki
Joined: Mar 2009
Heartbroken
Jenny, will you give Mike my love?
Mike was diagnosed only a few months before me and was quick to befriend me and make me feel welcome. He had such a positive outlook on things. It breaks my heart to know he's not going to make it but I really appreciate you letting us know. Not knowing is agonizing.
I'll be praying for all of you during this time and hope Mike is not in pain.
For those who don't know Mike, here is a link to his intro to the group:
Read Mike's Intro Here
God bless,
Diane
Joined: Jan 2009
I'm
very saddened to hear this, Jenny, and know that he is our brother and we will all be together one day. Your family will be in my prayers, he is a special person, always positive and sweet, and stuff like this really hurts and gets me down, once the disease gets worse. You always wish for 2nd and 3rd opinions, but then again, after awhile, people get sick of the fight, and do NOT give up, but just want to be free. I'm sure I'll be there one day, and know when it's time to stop. I hope he is not suffering, and please give him hugsss for me!
Hugsss!
~Donna
Joined: Jan 2009
Dear Mike and Jenny
Dear Mike and Jenny,
You and your beautiful family are in my prayers. Mike, you have been such support to me (and Dick) during our time on the board. I hope and pray that your family has some peaceful time together.
Jenny, I will hold you in prayer during this time. Even though Mike can't post, please know we will all be with you in thoughts and prayer.
With aloha,
Kathleen
Joined: Nov 2009
YOU ARE IN MY PRAYERS
YOU ARE IN MY PRAYERS
Joined: Oct 2008
Jenny
Thank you so much for updating us on Mike..Caregivers are very important in our lives. You have been there for him through all of this and I know even if he doesn't say it much that it means alot ..It is a horrible monster and I am so very sorry that Mike has declined..Please tell him we all love him and he is in our prayers as you are also. Its so hard to see a love one decline in health. Know that we are here for you to keep posting to us because as you already know talking to our little family here does help alot.....I will be thinking and praying for both of you...JULIE
Joined: Oct 2008
Jenny
Thank you so much for updating us on Mike..Caregivers are very important in our lives. You have been there for him through all of this and I know even if he doesn't say it much that it means alot ..It is a horrible monster and I am so very sorry that Mike has declined..Please tell him we all love him and he is in our prayers as you are also. Its so hard to see a love one decline in health. Know that we are here for you to keep posting to us because as you already know talking to our little family here does help alot.....I will be thinking and praying for both of you...JULIE
Joined: Mar 2009
Gosh
My heart is just broken.
Craig... I'm like you. I love BIG. It's hard to explain to people who are not like us. I love Mike and he will be missed.
Joined: Feb 2009
Aww, Jenny
I am so terribly sorry to hear of Mike's situation and your entire family's as well. Please know that you are all in my prayers. I hope and pray that he's not in pain.
Sandy
Joined: May 2008
jenny
I am so sorry Please let mike know i am thinking of him . I am so sad right now.
michelle
Joined: Mar 2009
.
I like to see who I'm praying for and Mike is my friend on Facebook. I'm trying to post a link to his profile picture in case you'd like to see a larger picture than he has here.
Mike's photo here
Joined: Mar 2009
Praying still
Lifting you and your family in prayer.
Much love,
Diane
Joined: Aug 2008
Keeping Mike and Jenny and family in Prayer....
Love and Hope for you and yours buddy...........Buzzard
Joined: Mar 2009
Remembering your family in
Remembering your family in prayer today.
Joined: May 2007
Jenny
Thanks for staying connected with us and bringing us updates. Please say Hi to Mike and let him know he is in my thoughts and prayers, as you all are.
Peace and blessings... Rob; in Vancouver
Joined: Mar 2009
Mike and Jenny
Keeping you and the kids in prayer and hoping you are able to enjoy time together as a family.
We love you,
Diane
Joined: Jun 2009
I am keeping your family in
I am keeping your family in my prayers. Patti
Joined: Aug 2008
Still got you and family in my prayers.......
Jenny, Please let Mike know we are still with him and you and the family. I think about each of you each day and say a silent prayer for peace and strength in your home...Hope and Love, Clift
Joined: Jan 2009
Jenny and Mike
Jenny and Mike,
Like the others, I continue to think about your family and pray for you through out the day. I hope you have moments of peace in your home right now,
Aloha,
Kathleen
Joined: Jan 2009
Jenny and Mike
repeat post
Joined: Mar 2009
Still praying Jenny and Mike
We have a guy in church who looks so much like Mike. He caught me staring at him yesterday. I kept wanting to hug Rob....
Sending cyber hugs to you both and only good thoughts.
Diane
Joined: Nov 2008
Mike
Thank you all for the kind thoughts and prayers.
Sincerely,
Jenny