Don't know what I'm doing?????

ChrisHB

I have posted several times in search of ways to help my brother, Mark. Mark has colon cancer Stage IV with spots in liver, lymph nodes, abdomen. rectum. He had chemo, sugergeries, and two recent stage 1 clinical trials which ravaged his body. After the second clinical trial, Mark consulted with his oncologist and decided to take a break from all chemo, trials, and to go onto disability from work. Do only what he wanted to do. Mark has been regaining weight and strength over the past weeks.

I had wanted to help Mark rebuild his health and looked into ways to do this through nutrition and diet. Came onto this site in my search & I emailed Patrick Quillen, author of "Beating Cancer With Nutrition".He recommended that Mark get an opinion from Fereshteh Akbarpour at the Orange County Immune Institute in Huntington Beach,CA. Mark got an appointment and her protocol was for a 4 week period of IV's, supplements, nutrition, massage , and infrared treatments at $5,900 per week. He saw a dietician through his medical plan and has also considered the Whitaker Wellness Institute in Newport Beach,CA as a person on this site had said her father went there.

Feeling unsure, I did a google on Quack Watch and found both the Orange County Immune Institute and Whitaker Wellness Institute listed under "Questionable" Clinics. There was no link to explain why.

I want Mark to get the best care he can, but I do not want him to spend the quality time he has with his loved ones on something that has only testimonials, but no concrete research.

I would appreciate any input. I want to help my brother, but the more I dig the more I get confused. I am the only person doing this research for my brother, and wonder if it is time for me to step back and let him be.

I would appreciate any thoughts.

Thank you

PGLGreg

I think consulting Quack Watch was a wise precaution. After your previous posting, I did look up the Orange County Immune Institute, read over some of Dr. "Ferre"s credentials, and watched a little video lecture of hers where she mentions some vague theory about body cells communicating with each other. Sounded like a quack to me. I think your brother should follow the advice of his oncologist.
-Greg

jim115

ChrisHB,

Your journey with your brother has got to be very, very painful -- and you and your brother have my deepest sympathies. I wish I could help with information or advice on your quest for alternative approaches to healing, but I've had little experience myself. I did work with a naturopath for awhile in early 2007 when I kept getting severe diarrhea from the FolFox protocol (I'm stage 4 colon cancer with tumors in my liver) -- which your brother may have been on as well. She recommended several supplements, one of which I know helped both with my diarrhea and overall digestion -- and as a result helped me gain weight & strength.. It's called Tyler Lipotropic Complex and is available on-line from several web sites. I've been told that the Integrative Therapeutics is the best manufacturer of Lipotropic Complex and I ordered some from RiteCare.com on-line pharmacy in early 2007 -- price then was $13.58 for a 90 capsule bottle.

Also, I recently found the web site for the National Center for Complementary and Alternative Medicine (http://nccam.nih.gov/), which is part of the National Institutes of Health -- and found that it has a lot of good information and links. I have to admit that I'm a bit skeptical of many of the claims out there of miracle cures -- particularly the ones that are quite expensive -- so it was refreshing to find some useful information from a reputable source like the National Institutes of Health.

I'm glad your brother is gaining weight and strength while taking a break from chemotherapy and clinical trials. I've had three breaks from chemo over the last year and a half, the longest for 3 months -- and CT scans showed that my tumors remained stable during each break -- which I thought was excellent. And each break helped me regain health and strength. I truly hope your brother's next scan is positive.

I know this isn't much help -- and I wish I could offer more. You and your brother will be in my thoughts.

jim115

Monicaemilia

Chris: I understand how you feel. I have travelled far for treatments, but I know the angst one feels in deciding whether it is worth your while or just a way of taking money from you. I am stage iv, had full colectomy, liver resection, have lung mets (scheduled for surgery), and one bone mets. There are no longer any chemos they can try on me, so they have also referred me to a phase I trial clinic. I too am not interested in going through more chemo, especially when the efficacy is highly questionable. So, that being said, I have stepped up my juicing to three times a day, take vitamin supplements that include Vit. C, D, Folic Acid, Calcium and Curcumin. Curcumin is currently being researched by MD Anderson as a treatment for cancer. I am also trying visualization (which is easier said than done). Just last night I watched a DVD from Adam, the Dreamhealer, giving ideas on visualization techniques. I truly believe the power of the mind is a formidable foe against any disease.

On the other side of the equation, I have a friend who is currently in Germany doing alternative and conventional treatments in search of remission, and like I said, I travelled far and wide for treatments. At the end of the day, I think the answer is up to him and what he is ultimately wanting to do, and of course, what the family can do without suffering financially. If he feels there is no merit in what is being offered to him, there are still ways you can help him that should not cost him a lot. I hope this helps. Monica

apache4

What does Mark want? His voice is missing in your posts except for his decision to stop anymore chemo. As a Stage IV with inoperable liver mets for two years, I know that I have let my children and sister know exactly what I want. I have a DNR in place, will opt for hospice care at home and hope that there will be some quality of life when all my options run out. My family respects my wishes and have not tried to change my mind or give me false hope. There is no cure out there for this. You can buy time, but not more then is meant for you to have. I also know that I could pass from something totally unrelated also. Last week I had to have my nose packed due to severe bleeding and almost choked on packing that had slipped down my throat. The quick thinking of a friend got me to Moffitt in time to pull it out.
I am sorry if this is rather blunt. I do have hope for living as long as possible with this and will fight a good fight, but not all fights can be won forever. My best to you and your brother.

shmurciakova

I just have to tell you that of course Quack Watch is going to poo poo and alternative or "unproven" medicine. You either embrace and believe in alternative medicine or you dont, but personally I feel there is a lot that Western Medicine is missing out on. Even large institutions like MD Anderson and NIH are starting to delve more into alternative healing modalities. Like I told you before, call Bastyr University for a referral in your area. They are a top notch school for Natural Medicine and can probably tell you where to go. They are located in Seattle.
Also, you can call Life Extension, which is a foundation dedicated to the promotion of research into alternative medicine.
See what they have to say about these places you are talking about. They have a hotline you can call. I am having some problem finding the phone #, but they have a website, LifeExtension.com I would say it is worth a try. It may be too late
to cure your brother, but you can certainly improve his quality of life and maybe someone can actually prolong his life as well.
At any rate, I think you should follow these avenues and see what happens.
Best wishes,
Susan H.

shmurciakova

shmurciakova said:

I just have to tell you that of course Quack Watch is going to poo poo and alternative or "unproven" medicine. You either embrace and believe in alternative medicine or you dont, but personally I feel there is a lot that Western Medicine is missing out on. Even large institutions like MD Anderson and NIH are starting to delve more into alternative healing modalities. Like I told you before, call Bastyr University for a referral in your area. They are a top notch school for Natural Medicine and can probably tell you where to go. They are located in Seattle.
Also, you can call Life Extension, which is a foundation dedicated to the promotion of research into alternative medicine.
See what they have to say about these places you are talking about. They have a hotline you can call. I am having some problem finding the phone #, but they have a website, LifeExtension.com I would say it is worth a try. It may be too late
to cure your brother, but you can certainly improve his quality of life and maybe someone can actually prolong his life as well.
At any rate, I think you should follow these avenues and see what happens.
Best wishes,
Susan H.

Oh hi again, I found the # for LIfe Extension Health Advisors
1-800-226-2370
I hope they can help you!
Susan H.

usakat

Hello Chris,

You have received some great advice here. What spoke to me in particular was Apache's and Monica's responses. Considering their stories and what they have been through (check out their personal pages), I believe their advice to heed Mark's wishes is what should be your only consideration at this point (only my opinion - you must decide for yourself). I know you have made suggestions, offered encouragement and given blessed support to Mark, but I have a sense that you and Mark will be better served if you take your cues directly from him.

I completely understand where you are coming from and I know how incredibly difficult it is to watch someone you love struggle with illness and suffering. The bad news that comes with cancer can be so daunting and relentless, but ultimately the choices that are made for treatment must be the patient's, even if loved ones disagree.

The ugly truth about cancer, especially when those of us reach a point where we are in advanced stages of cancer, is there really is no magic pill or potion or remedy. While miracles sometimes do occur and people are healed, all too often they are not. It's a sad reality that we all must try to come to terms with, ultimately for the betterment of the cancer patient.

As for treatment options, I personally believe whatever choice a patient makes, whether it be a Western modality or Eastern approach, or a combination thereof, the patient must BELIEVE that it will work and net the desired results. That is HOPE. Only Mark can answer what is best for him.

I did look up the centers you mentioned and I'm not convinced. It made me think of all those advertisements you see for weight loss plans. They all have spectacular testimonials of wonderful results, but they all have that little asterisk with the tiny print that says, "results not typical". Yes, people who go on those plans might lose weight, maybe only some of them, maybe even all of them, but how many people actually keep it off for a lifetime, or even a year?

In Dr. Akbarpour's video, she mentions that if they do not "cure" a patient of their malady, at least they can make them more comfortable. But that comfort comes with a very high price tag and with no guarantee of a cure, comfort or peace of mind. And just like choosing a course of treatment, only the patient can decide what will bring them comfort. I also can't help but be suspicious of someone who is selling their own special blend of herbs and supplements. Seems a little self serving to me.

Further, while there really is no price tag or money not well spent for life and well being, considering the price tag for the alternatives you looked at thus far and knowing how a lot of men think, I would guess that when Mark considers an expensive approach that offers no guarantees that he might be wrestling provider issues - he might worry that if he spent a bunch of money and didn't make it, he would be taking away from his family....just a guess. Perhaps the men here can speak more to this.

In any case, perhaps what you might consider is supporting your brother by asking him specifically what he wants and what he needs from you. Perhaps all he needs is your love and some help caring for his wife and children. You can't know unless you ask. Something else that might help is for you to work through your own grief about his illness, perhaps by speaking with a grief counselor, a clergy member or a good friend.

I hope this helps...

Katie

ChrisHB

usakat said:

Hello Chris,

You have received some great advice here. What spoke to me in particular was Apache's and Monica's responses. Considering their stories and what they have been through (check out their personal pages), I believe their advice to heed Mark's wishes is what should be your only consideration at this point (only my opinion - you must decide for yourself). I know you have made suggestions, offered encouragement and given blessed support to Mark, but I have a sense that you and Mark will be better served if you take your cues directly from him.

I completely understand where you are coming from and I know how incredibly difficult it is to watch someone you love struggle with illness and suffering. The bad news that comes with cancer can be so daunting and relentless, but ultimately the choices that are made for treatment must be the patient's, even if loved ones disagree.

The ugly truth about cancer, especially when those of us reach a point where we are in advanced stages of cancer, is there really is no magic pill or potion or remedy. While miracles sometimes do occur and people are healed, all too often they are not. It's a sad reality that we all must try to come to terms with, ultimately for the betterment of the cancer patient.

As for treatment options, I personally believe whatever choice a patient makes, whether it be a Western modality or Eastern approach, or a combination thereof, the patient must BELIEVE that it will work and net the desired results. That is HOPE. Only Mark can answer what is best for him.

I did look up the centers you mentioned and I'm not convinced. It made me think of all those advertisements you see for weight loss plans. They all have spectacular testimonials of wonderful results, but they all have that little asterisk with the tiny print that says, "results not typical". Yes, people who go on those plans might lose weight, maybe only some of them, maybe even all of them, but how many people actually keep it off for a lifetime, or even a year?

In Dr. Akbarpour's video, she mentions that if they do not "cure" a patient of their malady, at least they can make them more comfortable. But that comfort comes with a very high price tag and with no guarantee of a cure, comfort or peace of mind. And just like choosing a course of treatment, only the patient can decide what will bring them comfort. I also can't help but be suspicious of someone who is selling their own special blend of herbs and supplements. Seems a little self serving to me.

Further, while there really is no price tag or money not well spent for life and well being, considering the price tag for the alternatives you looked at thus far and knowing how a lot of men think, I would guess that when Mark considers an expensive approach that offers no guarantees that he might be wrestling provider issues - he might worry that if he spent a bunch of money and didn't make it, he would be taking away from his family....just a guess. Perhaps the men here can speak more to this.

In any case, perhaps what you might consider is supporting your brother by asking him specifically what he wants and what he needs from you. Perhaps all he needs is your love and some help caring for his wife and children. You can't know unless you ask. Something else that might help is for you to work through your own grief about his illness, perhaps by speaking with a grief counselor, a clergy member or a good friend.

I hope this helps...

Katie

This is a deep and heart felt thank you for the replies you all have given me. I so very much want to help my brother and all that I have done has been out of my love for him. But I have come to realize that when a person has a disease or a problem the battle will be best fought when that person accepts that there is a problem and works through it himself. I have been doing a lot of reading and research and sharing the information I've learned with my brother. He has appreciated it and it has helped him, but through it all I have learned more than he. He told me yesterday that it's hard trying to figure this all out, I know it's hard, but in the end he needs to make the decisions and choose to listen to the advice that in his mind is best for him. No one, not his wife, his mother, his sister, or his brother can stand between Mark and this disease. But we can all love him and support him in whatever decisions he makes. Mark needs to find his own voice and be at peace with that.
Thank you all,

Chris