CancerCompass message board discussion started by Bbutterfly on 12/16/2006 http://www.cancercompass.com/message-board/message/all,8324,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi to everyoneI've just been reading everyone's stories regarding their sons or daughter's  battle to fight ES. My heart goes out to each and everyone of you. My son (19) was just diagnosed with ES last week.I'm wondering if anyone has ever considered an alternative treatment to cancer other than conventional?? My son is scheduled to see a specialist in homepathics in Calgary Alberta for Dec 20. We are not new to this type of therapy. He is secheduled to begin a long, heavy treatment with chemo back home here for Jan 8. Reading your stories I have to say I'm glad he's made the decision to at least look into an alternative treatment that is non-invasive to the body. He does not want to live out of hospitals for the next 3 to ? years of his life and have his quality of life limited to chemo and being sick IF there is another option to consider. I worry every minute of every day if this might be a good thing but as he says If he doesn't look into he will always regret it. This treatment would be also be a very long process with alot of time and effort put into it but because it's non-evasive his quality of life would be so much better. It's scary either way and I support his decison 100%. After all it's his body that would have to endure any kind of treatment. I just thought I would write and tell you our story. If he decides to go ahead with the chemo I sure know the place for support. Your stories have touched me greatly and you are all in my prayers. Bbutterfly Sat, 16 Dec 2006 00:00:00 GMT Hi Sorry to hear about your son ...where is his ES?  think the location of the primary site is really important to the chance of 5+ survival rate...as for alternative methods I so so wish we had tried something different with Ryan . . here in Scotland I think we're pretty niave to the fact that there are other options and just go with the flow ....is there a reason that your son's not schedlued for chemo till January ....seems a bit of a wait ...too long for my liking, or was this your decision to give you time to check out other avenues ....Ryan waited 51 days from discovery of the lump to treatment & I'm 100% sure thats why he's dieing now ....the thing grew so big and 'polluted' his system ....then the chemo & radio broke down what ever was left of his own defences to leave him wide open to the cancer coming back bigger & stronger second time around.... Take care have a good xmas ...you & your son are in my thoughts Alexis Mon, 18 Dec 2006 00:00:00 GMT  On 12/18/2006 Alexis wrote:Hi Sorry to hear about your son ...where is his ES?  think the location of the primary site is really important to the chance of 5+ survival rate...as for alternative methods I so so wish we had tried something different with Ryan . . here in Scotland I think we're pretty niave to the fact that there are other options and just go with the flow ....is there a reason that your son's not schedlued for chemo till January ....seems a bit of a wait ...too long for my liking, or was this your decision to give you time to check out other avenues ....Ryan waited 51 days from discovery of the lump to treatment & I'm 100% sure thats why he's dieing now ....the thing grew so big and 'polluted' his system ....then the chemo & radio broke down what ever was left of his own defences to leave him wide open to the cancer coming back bigger & stronger second time around.... Take care have a good xmas ...you & your son are in my thoughtsHiMy name is Brenda and I thank you so much for responding to my message. I have been following your son Ryan's story and just feel so bad for what he is going through and as mom what it must be like for yourself. The Jan 8 date to begin chemo  is a delay based on Corey's decision to go out to Calgary Alberta in Canada to see a homepathic specialist whom was very highly recommended.My son and I have done intense research on both treatments and he really feels if he can find some other way that is not so invasive to his body that he at least needed to look into it. The number one reason so many people that given a choice - go with chemo because alternative medicine is so very expensive but my son is being given the gift of all exsenses paid if he so chooses to go this route. Alternative treatment is starting to come out more and more but so many of us just aren't knowledgable enough and tend to go with convential treatment. My son has followed Ryan's story as well as many others and is very reluctant about chemo. His ES is in his pelvis and his prognasis is not good with or without chemo. The chemo treatment was to begin today with 5 days of high dose chemo and maybe home for x-mas and then every 3 weeks with 2 days chemo. Even if Corey wasn't considering other treatment he would have not gone in this week and be so sick over x-mas knowing that this may very well be one x-mas that he can totally enjoy with family out in Alberta Canada. As you well know and Corey certaintly does as well is that if he chooses to go with chemo he has a very long road ahead - not a great survival rate and a poor quality of life. If he chooses the alternate treatment it may not cure him either but his quality of life will be a good one no matter what the end results may come to and that is so important to him. We had a good idea about 3 months ago that he was quite sick possilby with this disease. He began taking a program of homepathics then and continues to do so today. This is not anything like what he may receive for treatment once beig seen by this specialist but it was a beginning to build his strength in his body and mind. He beleives it has helped him alot. He is quite sick but his spirit and determination are just awesome. He walks but with a very slow shuffle and is taking morphine but nowhere near what the doctors say he is allowed to. He is in pain but says it's more uncomfortable than it is painful and only takes the morphine when he feels he needs it. When we went last week to get the final diagnosis which we pretty much knew anyway the doctor was having a hard time beleiving Corey when he talked about his pain. They seemed to think he should be in much more pain than Corey claimed and that he should be sicker than what he is. We of course pulled out all the homepathics Corey is taking and of course they were apalled and said that "this has to stop right now" as it will interac with the chemo he would be getting. Everything  Corey is taking is totally non-invasive and the 3 biggest ones were for restoring cell growth, nerve damage and for the mind. All good things intended for all good purposes - nothing harmful at all versus chemo and we all know how invasive that is and what's being put into the body. I worry every second of the day and pray that he gets well informed while he is out there so he can make a decision on what he feels is best for him. Time is of the essence and we all wish that we had more of it but we have to go with today and move forward. His appt is tomorrow and then he will spend x-mas with family. He will go for another appt just after x-mas and then he will have a serious decision to make on what treatment he wants to do. If he chooses the chemo he will begin Jan 8. If he decides to go with the other he will be out in Alberta staying with family for quite some time. It's all so crazy and so so unfair to these kids. I have not been to work for a week now and am taking today and tomorrow off for "me" time. Haven't or rather refused to fall apart with Corey around so now I can do what I need to whatever that may be. I also have a 21 year old daughter who lives with me going through 7 days of exams for massage therapy she is taking. Corey's situation has taken a toll on her as well so we both need some time to regroup and think positive and be there for Corey in whatever decision he chooses to make. Thanks again for responding and would love to keep in touch - how is Ryan at this time ????? Will he be home for x-mas?? Bbutterfly Tue, 19 Dec 2006 00:00:00 GMT Thanks for all that info on C Alexis Wed, 20 Dec 2006 00:00:00 GMT Thanks for all that info on Corey....he is a very brave young man to go against the regime ....what you say about the other family members is so true & people forget about them ...Ryan has 3 siblings who for the the best part of their lives only remember 'their big brother' being sick . . they are all trying to get on with things and my middle one at 15 has just been sitting his prelims ....so so hard with everything thats been going on.  Ryan now has the mumps ...his face and neck are swollen something terrible ....he is so down ...he's never been like that before ....he has literally been out with his friends for 1 day in about 35 and the next day could hardly walk for the pain in his left leg...tore a muscle ....think its because he's not been using them for so long then did too much.  He's not in hospital he's at home....he won't be back in hospital he will spend what ever time he has left here at home .....I think Ryan is the longest 'suffering' or 'surving' which ever way you want to look at it (that is discussed re ES on this  site) he has fought so hard . . . never moans .....just picks himself up & dusts himself down and goes on & on & on .....they told him at the age of 18 that he was dieing and he didn't even cry . . I'm like you I don't fall apart in front of him ....I drive my car to the side of the Loch & let it all go ....then I wipe myself down and head for home & start again ....there is nothing else us Mum's can do. . . I know within my heart this is the very last Christmas & I'm going to make it the best we've ever had. . . I will always remember my Ryan as a hero . . . he has fought (in my eyes) like no warrior could ever fight, his bravery has no words to describe it. . it is beyond belief how mentally strong he is . . sounds like Corey is made of the same stuff . . . take care Love & best wishes to you all from Bonnie Scotland  Alexis Wed, 20 Dec 2006 00:00:00 GMT  On 12/20/2006 Alexis wrote:Thanks for all that info on Corey....he is a very brave young man to go against the regime ....what you say about the other family members is so true & people forget about them ...Ryan has 3 siblings who for the the best part of their lives only remember 'their big brother' being sick . . they are all trying to get on with things and my middle one at 15 has just been sitting his prelims ....so so hard with everything thats been going on.  Ryan now has the mumps ...his face and neck are swollen something terrible ....he is so down ...he's never been like that before ....he has literally been out with his friends for 1 day in about 35 and the next day could hardly walk for the pain in his left leg...tore a muscle ....think its because he's not been using them for so long then did too much.  He's not in hospital he's at home....he won't be back in hospital he will spend what ever time he has left here at home .....I think Ryan is the longest 'suffering' or 'surving' which ever way you want to look at it (that is discussed re ES on this  site) he has fought so hard . . . never moans .....just picks himself up & dusts himself down and goes on & on & on .....they told him at the age of 18 that he was dieing and he didn't even cry . . I'm like you I don't fall apart in front of him ....I drive my car to the side of the Loch & let it all go ....then I wipe myself down and head for home & start again ....there is nothing else us Mum's can do. . . I know within my heart this is the very last Christmas & I'm going to make it the best we've ever had. . . I will always remember my Ryan as a hero . . . he has fought (in my eyes) like no warrior could ever fight, his bravery has no words to describe it. . it is beyond belief how mentally strong he is . . sounds like Corey is made of the same stuff . . . take care Love & best wishes to you all from Bonnie Scotland Thank you for your kind words and support. This latest news of Ryan's Mumps is not what we want to hear. I really really hope that we will never have to go through the experience that Ryan and yourself are enduring. Corey's appt is today and I will for sure update you along the way. God Speed to you both and best wishes for the holiday season. Please keep in touch....Brenda  ( Manitoba, Canada ) Bbutterfly Wed, 20 Dec 2006 00:00:00 GMT I just read about Corey and Ryan.  My son is in remission from Ewings!! Our goal was to treat Jake with alternative methods---diagnosed at 15, in June 2003. Started with alternative treatments in Mexico-- Did surgery 6 mos. into the alternative methods--Ewings in his right mandible---it was resected and replaced with titanium.  Nine months later a recurrence----used Coley's for 3 months, and then chose to do low dose radiation combined with Hyperthermia in 2005--at Valley Cancer Institute in LA..  It worked very well for Jake--I would recommend trying hyperthermia/radiation along with any alternative you can combine with it-----homeopathics, massage, energetic balancing, acupunture, Natural Cellular Defense, Dr. Kam Yuen, nutrition, juicing, chiropractic, AIM program---we did all of these--we work very closely with a naturopathic physician who has worked with many cancer patients.  We were and still are very proactive in building the body and the mind  and the spirit---Jake does TaiChi and Non contact Kung Fu.  He just turned 19--he is an incredible young man----he will be having restorative work/ reconstruction of his jaw in the future.  When this all began I was very much in fear--that was to my detriment----better to  Be as proactive and cheerful as you can---foucs on health, not disease. Sending light and love your way.With gratitude Kappy--Jake's Mom  Kappy Sun, 31 Dec 2006 00:00:00 GMT Your son's story is very inspirational.  I would love to hear more about your experiences at Valley Cancer Institute.  We are considering taking my father there for treatment, but are unsure if it's the best next step.  How long was your son's treatment there and what kind of side effects did he experience?  Also, how did you feel about the level of care provided at Valley?  I hope that your son continues to stay well.  All the best to you and your family. Irena Sun, 31 Dec 2006 00:00:00 GMT  On 12/31/2006 Irena wrote:Your son's story is very inspirational.  I would love to hear more about your experiences at Valley Cancer Institute.  We are considering taking my father there for treatment, but are unsure if it's the best next step.  How long was your son's treatment there and what kind of side effects did he experience?  Also, how did you feel about the level of care provided at Valley?  I hope that your son continues to stay well.  All the best to you and your family. Hi Irena, Jake was treated at VCI for a little over five months---Monday through Friday treatements for 22 weeks----it is not easy.  Jake's tumor was in his cheek--so it was superficial--very close to the surface.  Jake did very well, and had few side affects----fatigue, a short bout of mouth sores, some loss of taste, some loss of saliva. As I said in my first correspondence---we did everything we could to complement this treatment with holisitic methods.  We were very proactive.   I believe one does best having a good personal support system---I was with Jake every treatment----and we took responsibility for his care----it is a treatment clinic---most people have their own doctors elsewhere, and are at Valley to get this treatment because not too many clinics give this type of treatment.  And I think Dr. Bicher is one of the most knowledgeable in the world for this kind of treatment.   The patients give each other a lot of support---because you see the same people every day for months.  So, it is easy to make friends.  Where do you live?  What type and where is the cancer growth?  Is your father in good health otherwise?  Would someone be able to be with him? Has your father had any other kind of treatment?   Happy New YearWith GratitudeKappy  Kappy Sun, 31 Dec 2006 00:00:00 GMT Thank you so much for your message.  And, Happy New Year to you and your family!!  We live in Denver.  How about you?  My father has stomach cancer, which I'm sure is located much deeper than your son's tumor.  I know that VCI treats a lot of superficial tumors.  They haven't treated much stomach cancer, but have treated ovarian cancer quite a bit.  Were most of the patients being treated while you were at VCI receiving treatment for superficial tumor or was it a mix of tumor locations.I have spoken with Dr. Wolfstein on the phone and he was quite optimistic in terms of what their treatment could accomplish in my dad's case.  I pray that he is right.  My father had 6 rounds of chemo which he finished in July and has not had any treatment since that time.  At this point it's either more chemo or something else like VCI.  He made it through the first 6 rounds of chemo, but it was very tough.  I can't imagine doing more chemo now - I think the risks are too high.  Altough his oncologist feels that he could manage through it. One of my biggest concerns about VCI are side effects.  Dr. Wolfstein said that there really are very few side effects - he would probably have some nausea and possibly diahrea, but it would be mild and they have medicine for it.  I also spoke with another doctor there, Dr. A-something and he did not paint the same rosey picture that Dr. Wolfstein did.  He mentioned the same side effects as Wolfstein, but also said the he would have nausea, tiredness, and the treatment could affect his appetite because the radiation would be to the abdomen.  The appetite part definitely concerns me because my father has already lost a great deal of weight and cannot afford to lose more.  In your son's case, were there any effects on his appetite or blood counts.  Also, how mild or severe was his fatigue?  You mentioned that the treatment was diffcult, what about it made it difficult - is the actual treatment painful or does it cause discomfort?  Prior to his diagnosis, my father was in excellent health - never had a single health problem.  As you can imagine when he was diagnosed a year ago, it came as a huge shock.  If my parents were to go out there, my mom would be with him during the entire treatment time frame.  Sorry that this message is so long.  This is a very hard decision to make.  I think being so far away from home during such a long treatment, makes the whole process even more challenging.All the best to you and Jake.Irena   Irena Thu, 04 Jan 2007 00:00:00 GMT  On 1/4/2007 Irena wrote:Thank you so much for your message.  And, Happy New Year to you and your family!!  We live in Denver.  How about you?  My father has stomach cancer, which I'm sure is located much deeper than your son's tumor.  I know that VCI treats a lot of superficial tumors.  They haven't treated much stomach cancer, but have treated ovarian cancer quite a bit.  Were most of the patients being treated while you were at VCI receiving treatment for superficial tumor or was it a mix of tumor locations.I have spoken with Dr. Wolfstein on the phone and he was quite optimistic in terms of what their treatment could accomplish in my dad's case.  I pray that he is right.  My father had 6 rounds of chemo which he finished in July and has not had any treatment since that time.  At this point it's either more chemo or something else like VCI.  He made it through the first 6 rounds of chemo, but it was very tough.  I can't imagine doing more chemo now - I think the risks are too high.  Altough his oncologist feels that he could manage through it. One of my biggest concerns about VCI are side effects.  Dr. Wolfstein said that there really are very few side effects - he would probably have some nausea and possibly diahrea, but it would be mild and they have medicine for it.  I also spoke with another doctor there, Dr. A-something and he did not paint the same rosey picture that Dr. Wolfstein did.  He mentioned the same side effects as Wolfstein, but also said the he would have nausea, tiredness, and the treatment could affect his appetite because the radiation would be to the abdomen.  The appetite part definitely concerns me because my father has already lost a great deal of weight and cannot afford to lose more.  In your son's case, were there any effects on his appetite or blood counts.  Also, how mild or severe was his fatigue?  You mentioned that the treatment was diffcult, what about it made it difficult - is the actual treatment painful or does it cause discomfort?  Prior to his diagnosis, my father was in excellent health - never had a single health problem.  As you can imagine when he was diagnosed a year ago, it came as a huge shock.  If my parents were to go out there, my mom would be with him during the entire treatment time frame.  Sorry that this message is so long.  This is a very hard decision to make.  I think being so far away from home during such a long treatment, makes the whole process even more challenging.All the best to you and Jake.Irena  Hello again Irena, We are from the Chicago area suburbs--northwest of the city about 50 miles.  We were at VCI in Jan. 2005.  There was a lot of breast cancer, prostate cancer, and a few other head neck cancers, and a few brain cancer patients, and some lymphoma, liver, colon,....really all kinds.   Jake did well with few side effects. His blood was good most of the time.  His appetite was okay. His fatigue was coupled with depression, I think.  Fatigue is a factor----so good rest is important as well as getting exercise like walking and getting fresh air.   I do remember some patients having nausea, and no appetite----so I know that can be a big factor if your abdomen is being treated.  So, that definitely is a concern for your dad. As i said before--I believe one must be very proactive and use as many tools as one can to nurture the body and soul especially if the body is being assaulted. I could make some specific suggestions for you that  I think would be helpful.  They are products that are not covered by insurance, so it takes out of pocket money.  From my perspective, and compared to drugs, these things are not very expensive. I would suggest he start on zeolites immediately no matter what treatment course you choose.  Zeolites act as magnets for toxins  and enhance one's immune system, and help buffer ph!!!!!.   So, let me know if you want to know about them, and how to get zeolites and some other products that I would suggest.   The difficulty of the treatment was being away from home for almost six months, and the fact that it was daily, daily, every day.  It is so important to get the daily treatment.  We lived one hour from the clinic--with some family, so we drove in LA traffic every day. We also enjoyed the sun shine, the mountains, the ocean----so there was a lot of positives about the environment.  We did what we had to do.  I would do it again.   The apartments they offer are very near--so driving and traffic is not an issue if you live in them.  I know that this is not an easy decision. With GratitudeKappy   Kappy Thu, 04 Jan 2007 00:00:00 GMT  On 1/4/2007 Kappy wrote: On 1/4/2007 Irena wrote:Thank you so much for your message.  And, Happy New Year to you and your family!!  We live in Denver.  How about you?  My father has stomach cancer, which I'm sure is located much deeper than your son's tumor.  I know that VCI treats a lot of superficial tumors.  They haven't treated much stomach cancer, but have treated ovarian cancer quite a bit.  Were most of the patients being treated while you were at VCI receiving treatment for superficial tumor or was it a mix of tumor locations.I have spoken with Dr. Wolfstein on the phone and he was quite optimistic in terms of what their treatment could accomplish in my dad's case.  I pray that he is right.  My father had 6 rounds of chemo which he finished in July and has not had any treatment since that time.  At this point it's either more chemo or something else like VCI.  He made it through the first 6 rounds of chemo, but it was very tough.  I can't imagine doing more chemo now - I think the risks are too high.  Altough his oncologist feels that he could manage through it. One of my biggest concerns about VCI are side effects.  Dr. Wolfstein said that there really are very few side effects - he would probably have some nausea and possibly diahrea, but it would be mild and they have medicine for it.  I also spoke with another doctor there, Dr. A-something and he did not paint the same rosey picture that Dr. Wolfstein did.  He mentioned the same side effects as Wolfstein, but also said the he would have nausea, tiredness, and the treatment could affect his appetite because the radiation would be to the abdomen.  The appetite part definitely concerns me because my father has already lost a great deal of weight and cannot afford to lose more.  In your son's case, were there any effects on his appetite or blood counts.  Also, how mild or severe was his fatigue?  You mentioned that the treatment was diffcult, what about it made it difficult - is the actual treatment painful or does it cause discomfort?  Prior to his diagnosis, my father was in excellent health - never had a single health problem.  As you can imagine when he was diagnosed a year ago, it came as a huge shock.  If my parents were to go out there, my mom would be with him during the entire treatment time frame.  Sorry that this message is so long.  This is a very hard decision to make.  I think being so far away from home during such a long treatment, makes the whole process even more challenging.All the best to you and Jake.Irena  Hello again Irena, We are from the Chicago area suburbs--northwest of the city about 50 miles.  We were at VCI in Jan. 2005.  There was a lot of breast cancer, prostate cancer, and a few other head neck cancers, and a few brain cancer patients, and some lymphoma, liver, colon,....really all kinds.   Jake did well with few side effects. His blood was good most of the time.  His appetite was okay. His fatigue was coupled with depression, I think.  Fatigue is a factor----so good rest is important as well as getting exercise like walking and getting fresh air.   I do remember some patients having nausea, and no appetite----so I know that can be a big factor if your abdomen is being treated.  So, that definitely is a concern for your dad. As i said before--I believe one must be very proactive and use as many tools as one can to nurture the body and soul especially if the body is being assaulted. I could make some specific suggestions for you that  I think would be helpful.  They are products that are not covered by insurance, so it takes out of pocket money.  From my perspective, and compared to drugs, these things are not very expensive. I would suggest he start on zeolites immediately no matter what treatment course you choose.  Zeolites act as magnets for toxins  and enhance one's immune system, and help buffer ph!!!!!.   So, let me know if you want to know about them, and how to get zeolites and some other products that I would suggest.   The difficulty of the treatment was being away from home for almost six months, and the fact that it was daily, daily, every day.  It is so important to get the daily treatment.  We lived one hour from the clinic--with some family, so we drove in LA traffic every day. We also enjoyed the sun shine, the mountains, the ocean----so there was a lot of positives about the environment.  We did what we had to do.  I would do it again.   The apartments they offer are very near--so driving and traffic is not an issue if you live in them.  I know that this is not an easy decision. With GratitudeKappy  Hi Kappy,I hope all is well. I just sent you a private message. Irena  Irena Tue, 06 Feb 2007 00:00:00 GMT