What to do.......

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UncleBuddy
UncleBuddy Member Posts: 1,019 Member

My brother started his 2nd round of Lonsurf last week and was hospitalized this past weekend. He had what they believe was a GI bleed and low BP and heart rate. Chemo is weakening his heart and the cardiologist feels it will only get worse. The oncologist said he can go back on Lonsurf at a lower dose and risk having this episode happen again or he can stop chemo and start palliative care. The decision has to be his. My sister said there's something called proton therapy that he should try. Does anyone know anything about it? Are there risks? Does it work? I've heard it's controversial. I'm very sad to think that we may be at the end of the road. 

Suggestions?

Lin

 

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Dear Lin

    This is hard news indeed. 

    I know your brother has been a real warrior, fighting this battle with aplomb. Is he able to make the decision himself, understanding the implications? 

    You have been such a support to him, and I know you will be strong until the end. 

    I can't answer your question about the proton therepy. 

    I do know there comes a time when one has to weigh up the quality of life when thinking about extending it with yet more treatments. 

    Such a very hard decision. 

    Bless you! Bless your brother! 

    Sue 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Thanks Sue

    He can make it with the right information explained in simple terms. We will sit down and talk some more, but I think he needs to have some sort of control and make the decision for himself.

    Thank you for your kind words. 

    Lin

  • SilentRenegade
    SilentRenegade Member Posts: 123
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    Not sure where you're located

    Not sure where you're located, but University of Penn in Philadelphia, PA does Proton Therapy. I've heard it's pretty incredible. I'm not sure where his tumors are, but it wouldn't hurt to look in to it if you're not far. Unfortunately I've read that not many places offer proton therapy. 

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Information

    Here is a link to the Mayo Clinic which discusses current uses, clinical trials, etc. using proton therapy.

    http://www.mayoclinic.org/tests-procedures/proton-therapy/home/ovc-20185455

    Neither the current or clinical trial list indicates use for CRC.  However, it might be used for mets to other organs, but it doesn't specifically say.

    My thoughts and prayers are with your brother and you as you travel the unknown road.

    Marie who loves kitties

  • traci43
    traci43 Member Posts: 773 Member
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    Lin

    I am saddened to hear this news.  YOur brother has fought well and you've been a terrific advocate for him.  My thoughts and prayers are with you and your family as you consider next steps.  Traci

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Not sure where you're located

    Not sure where you're located, but University of Penn in Philadelphia, PA does Proton Therapy. I've heard it's pretty incredible. I'm not sure where his tumors are, but it wouldn't hurt to look in to it if you're not far. Unfortunately I've read that not many places offer proton therapy. 

    Thank you.

    We are a long way from Phillie, in the Hudson Valley in NY. He has many tumors in the lungs and a couple in his liver. So far that's the extend of the metasis. I think I need to do a little more research. Thank you Silent Renegade.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Information

    Here is a link to the Mayo Clinic which discusses current uses, clinical trials, etc. using proton therapy.

    http://www.mayoclinic.org/tests-procedures/proton-therapy/home/ovc-20185455

    Neither the current or clinical trial list indicates use for CRC.  However, it might be used for mets to other organs, but it doesn't specifically say.

    My thoughts and prayers are with your brother and you as you travel the unknown road.

    Marie who loves kitties

    Thanks Marie

    I will start reading up on what else is out there. His oncologist has been such a fighter, in his corner the whole time, so it makes me think she feels this is the last option. i'll mention it to her after I read up on it. Thank you for the link and your prayers. I really appreciate it!

    Lin

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    traci43 said:

    Lin

    I am saddened to hear this news.  YOur brother has fought well and you've been a terrific advocate for him.  My thoughts and prayers are with you and your family as you consider next steps.  Traci

    Thanks Traci

    He has fought long and hard. He is not in any pain or discomfort now. He's still mobile, just a little weak. I'm going to look into other options, although I think his weak heart will exclude him from any trials or new therapies. I am sure his oncologist has looked into everything available. If this is it, I'll make sure he enjoys whatever time he has left. Thank you for the prayers. We will surely need them. 

     

  • MS2014
    MS2014 Member Posts: 58
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    Proton Therapy

    So sad to know about your brother state Lin

    As far as I know proton therapy is like "radiate" areas where the tumor is. It has de advantage that beam can concentrate on tumor areas

    Maybe for liver mets and lung mets is usefull when the number of mets is not huge. I don't know. I've read the problem is the Device used in proton therapy is extremely expensive, so it is not widely used

    Have your heard about micro spheres? For liver mets can be an option

    All my best whises to your brother

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    MS2014 said:

    Proton Therapy

    So sad to know about your brother state Lin

    As far as I know proton therapy is like "radiate" areas where the tumor is. It has de advantage that beam can concentrate on tumor areas

    Maybe for liver mets and lung mets is usefull when the number of mets is not huge. I don't know. I've read the problem is the Device used in proton therapy is extremely expensive, so it is not widely used

    Have your heard about micro spheres? For liver mets can be an option

    All my best whises to your brother

    Thanks MS

    He decided today that he's had enough. He wants to enjoy the rest of his life chemo-free. He's afraid the chemo is going to end up killing him sooner. I'm at peace with his decision. He has fought a long fight. Thanks.

  • John23
    John23 Member Posts: 2,122 Member
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    Thanks MS

    He decided today that he's had enough. He wants to enjoy the rest of his life chemo-free. He's afraid the chemo is going to end up killing him sooner. I'm at peace with his decision. He has fought a long fight. Thanks.

    Lin.....

    Lin.....

    When the going gets tough, the tough get a break.

    Seriously.... There -are- other ways to fight cancer. There's no "cure", but there are other options that can dramatically slow the progression and add some time to one's life.

    Chemical and radiation therapy aren't the only options. And there is absolutely no need to spend big bucks on "alternatives" that have no serious merit. Please do no go that route! It's easy to fall into the trap of spending a lot of money for "oil of Mistletoe" and other totally unproven schemes to extend one's life. Do not fall into that trap!!

    There is no way to guarantee against a recurrence of cancer; it can strike again regardless of the modality used. But there are many modalities that can extend life by slowing the progression of cancer without causing the debilitating side effects of harsh chemicals or radiation.

    Refusing "conventional treatment" is fine if that's the choice, but when it comes to cancer, we shouldn't sit idle. There are other options to seek out, and many very inexpensive options appear to work better than the harsh, damaging treatments presently being pushed by the industry.

    Read here: Treatment options

    And feel free to read my history and blog.

    I was given 6 mo to a year in 2006.

    My best wishes to you and yours.

    John

     

  • MS2014
    MS2014 Member Posts: 58
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    Thanks MS

    He decided today that he's had enough. He wants to enjoy the rest of his life chemo-free. He's afraid the chemo is going to end up killing him sooner. I'm at peace with his decision. He has fought a long fight. Thanks.

    So sad

    When I opened the thread and saw your brther decision it made me so sad!

    I'm trying to push my mom to go on and on, so hearing that from your brother gives me a pain n the soul

    I've read your profile and I'm sure you must be proud of your work looking for options and taking care of your beloved brother

    Please give him a kiss for me, and I wish you the best

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Thanks MS

    He decided today that he's had enough. He wants to enjoy the rest of his life chemo-free. He's afraid the chemo is going to end up killing him sooner. I'm at peace with his decision. He has fought a long fight. Thanks.

    Admiration

    I admire your brothers strenght and I admire your commitment to him. 

    I know that many loving family memebers have suffered long, when it is way past their desire to fight with treatment, because they do not want to hurt their loved ones. So much suffering for so little extra time. 

    I am happy for him, because, with his heart problem along with the cancer, his life will be shorter than you would like, but knowing that he will suffer less and enjoy the time he has, will make him, and in the end you, dad and your sister happier. 

    And of course, you just never know. He may indeed live longer without the chemo and the side effects that are threatening his heart. We can pray for that, for sure. 

    Big hugs! 

    SUE

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    edited June 2016 #15
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    John23 said:

    Lin.....

    Lin.....

    When the going gets tough, the tough get a break.

    Seriously.... There -are- other ways to fight cancer. There's no "cure", but there are other options that can dramatically slow the progression and add some time to one's life.

    Chemical and radiation therapy aren't the only options. And there is absolutely no need to spend big bucks on "alternatives" that have no serious merit. Please do no go that route! It's easy to fall into the trap of spending a lot of money for "oil of Mistletoe" and other totally unproven schemes to extend one's life. Do not fall into that trap!!

    There is no way to guarantee against a recurrence of cancer; it can strike again regardless of the modality used. But there are many modalities that can extend life by slowing the progression of cancer without causing the debilitating side effects of harsh chemicals or radiation.

    Refusing "conventional treatment" is fine if that's the choice, but when it comes to cancer, we shouldn't sit idle. There are other options to seek out, and many very inexpensive options appear to work better than the harsh, damaging treatments presently being pushed by the industry.

    Read here: Treatment options

    And feel free to read my history and blog.

    I was given 6 mo to a year in 2006.

    My best wishes to you and yours.

    John

     

    John

    You certainly were put through the wringer. I can understand why you'd search for alternative medicine. I do feel my brother was given 16 years he wouldn't have had without the treatment he had.

    I am going to start some research into TCM. It doesn't hurt to see what else is out there. I don't know if my brother wants to start a new program. He is sick and tired of doctors and medicines. I can't get him to eat his veggies, never mind herbs. With that said, I will speak with him, explain the alternatives that are available and see if he's interested in checking it out. Thank you for sharing your story and information. Hopefully he'll be willing to check it out.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    edited June 2016 #16
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    MS2014 said:

    So sad

    When I opened the thread and saw your brther decision it made me so sad!

    I'm trying to push my mom to go on and on, so hearing that from your brother gives me a pain n the soul

    I've read your profile and I'm sure you must be proud of your work looking for options and taking care of your beloved brother

    Please give him a kiss for me, and I wish you the best

    MS2014

    My brother has been dealing cancer for a long time. He started with non-hodgkins lymphoma in 2000 and was supposedly cured. Then in 2011 rectal cancer reared its ugly head. I think he's just tired of doctors and medicines. He wants to live a regular life, eat what he wants, go where he wants and just enjoy life for the time he has left. My heart is broken, but if this is what he wants, I support him 100%. For once, the whole family agrees on something.

    I feel blessed that we were given this extra time with him. We thought he was a goner in 2000.

    Thank you for your kind words.

    Lin

  • lizard44
    lizard44 Member Posts: 409 Member
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    Your brother

    HAS fought a long fight, and I know it has been hard on him and on all of you. I, too admire his strength and your commitment. I hope  he is able to spend the rest of his life in peace and with minimal  pain and discomfort,  actually living and  enjoying whatever pleasures he can. And as Sue says, you just never know. Sending many postive thoughts to you both.

    Grace/lizard44

  • MS2014
    MS2014 Member Posts: 58
    edited June 2016 #18
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    MS2014

    My brother has been dealing cancer for a long time. He started with non-hodgkins lymphoma in 2000 and was supposedly cured. Then in 2011 rectal cancer reared its ugly head. I think he's just tired of doctors and medicines. He wants to live a regular life, eat what he wants, go where he wants and just enjoy life for the time he has left. My heart is broken, but if this is what he wants, I support him 100%. For once, the whole family agrees on something.

    I feel blessed that we were given this extra time with him. We thought he was a goner in 2000.

    Thank you for your kind words.

    Lin

    When I read your words I can't stop crying.

    When I read your words I can't stop crying.

    Maybe I'm not realistic but I wish with all my soul you could finally find a way to treat him

    Have you heard about metformin? There are trials with good result

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896365/

    I have proposed to my mum onc. and I think we are going to at least consider it.

    Our Onc said it is promising

    It gives chemo an extra push

    I don't want to make your brotehr decision more difficult but I can stop trying to find new opportunities

    All my kisses to you and your brother

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    MS2014 said:

    When I read your words I can't stop crying.

    When I read your words I can't stop crying.

    Maybe I'm not realistic but I wish with all my soul you could finally find a way to treat him

    Have you heard about metformin? There are trials with good result

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896365/

    I have proposed to my mum onc. and I think we are going to at least consider it.

    Our Onc said it is promising

    It gives chemo an extra push

    I don't want to make your brotehr decision more difficult but I can stop trying to find new opportunities

    All my kisses to you and your brother

     

    Thanks MS

    I spoke to his doctor, the trials are out of the question because of his heart. His last test showed his heart function is very poor, his EFR was around 25 which is considered heart failure (or cardiomyopathy). That's why they took him off of chemo. From what I understand, metformin is taken WITH chemo, not alone. But I appreciate your thoughts. I hate this dreaded disease. My brother is the kindest, sweetest person I know. it sucks!

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Trubrit said:

    Admiration

    I admire your brothers strenght and I admire your commitment to him. 

    I know that many loving family memebers have suffered long, when it is way past their desire to fight with treatment, because they do not want to hurt their loved ones. So much suffering for so little extra time. 

    I am happy for him, because, with his heart problem along with the cancer, his life will be shorter than you would like, but knowing that he will suffer less and enjoy the time he has, will make him, and in the end you, dad and your sister happier. 

    And of course, you just never know. He may indeed live longer without the chemo and the side effects that are threatening his heart. We can pray for that, for sure. 

    Big hugs! 

    SUE

    Thanks Sue

    You always know what to say. We are just hoping that he will enjoy the time he has left. I wish I  had a magic wand and could make cancer disappear, but that's not going to happen. He seems at peace with his decision. If he's happy, I'm happy.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    lizard44 said:

    Your brother

    HAS fought a long fight, and I know it has been hard on him and on all of you. I, too admire his strength and your commitment. I hope  he is able to spend the rest of his life in peace and with minimal  pain and discomfort,  actually living and  enjoying whatever pleasures he can. And as Sue says, you just never know. Sending many postive thoughts to you both.

    Grace/lizard44

    Thanks Grace

    I am hoping for the same! He deserves to be happy!