Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 hi Patty: I wish you good luck on your next transplant. God Bless You.... Hope , you get one soon. No, that is fine, I wanted to know. Boy, never knew there was so many diseases of the liver. Hope, someday they have more treatments and cures. Everyone here, are great people. Are you able to have a full liver or partial? The Dr. told him that he could have partial. Will that mean , maybe someday , he would have another? His brother is 59, they say he is too old, and his sister is 55. and she is a positive. Cliff is type O. Thanks for all the information-- you are in my thoughts and prayers. And for all the people in this group. Take care Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Jerry.. Yes, we did find that out---about the 2 livers growing in a short time. My worry is that, if Cliff doesn't get a living donor.; will he have a good chance for O blood type ? What are the odds -for the waiting time for the transplant... if he doesn't get a liver donor. I will have to get tested for my blood type. My mother is A positive, one of my sisters is A positive. If I give blood, they will tell me my blood type. Thanks for your help. Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Gaynel....what type are you? You don't have to be related to donate part of your liver to someone just the same blood type. I don't really think they ar goning to take just part of his live...they will take it all as the whole thing is affected...perhaps you misheard. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hey, Patty, don't cheat him out of a year. He earned it (they hard way). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi Gaynel, The Dr's are discouraging me from pushing the partial route right now, I had some damage to my hepatic Artery and have had quite a bit of reconstruction since my last transplant so they are wanting me to wait for a (whole) cadaveric donor. Because I have to have a second transplant this in no way means your husband will need one. Many people do well for a lot longer, Jerry, our owner, is going on 7 years and Bonnie, another member just celebrated her 8th or maybe 9th anniversary. They both are going strong and probably have many many more years ahead of them. There is always a risk of rejection, I'm sure you know that, but there is no reason to believe your husband's liver won't last a long time. As to partials, I have two sisters, both type 'O', I am a "B", I do have a brother but he is not an option for other reasons. My 75 year old mother who is "B" offered me part of hers, that brought tears to my eyes. The other factor with living donors is they do not have to be siblings, we have a couple here, Cheryl and Randy, Cheryl was Randy's donor. He seems to be doing very well. I hope Cliff is doing well and that they have stabilized the HepC. Hang in there, remember we take any and all questions and concerns. Patty -----Original Message-----From: Gaynel508@... [mailto:Gaynel508@...] Sent: Thursday, June 12, 2003 6:12 PM Subject: Re: [ ] saying hellohi Patty:I wish you good luck on your next transplant. God Bless You....Hope , you get one soon. No, that is fine, I wanted to know. Boy, never knew there was so many diseases of the liver. Hope, someday they have more treatments and cures. Everyone here, are great people. Are you able to have a full liver or partial? The Dr. told him that he could have partial. Will that mean , maybe someday , he would have another? His brother is 59, they say he is too old, and his sister is 55.and she is a positive. Cliff is type O. Thanks for all the information-- you are in my thoughts and prayers. And for all the people in this group.Take careGaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 patty.....8 years for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Gaynel..... as far as age goes...we have a member of this group who gave part of her liver to her daughter and I'm pretty sure she is in her upper 50's....Age isn't as important as health and 59 is not old....I'm sorry I misunderstood what you were saying about partial Tx.....you mean " living donor " . as Patty said there is no reason to believe your husband would everl need another liver past this one....Patty had special circumstances and is not that typical. O is the most abundant type of blood and a donor should be easier to find than Patty's is. I repeat what is your blood type...you could be a living donor too, you know, if you are of the same type .... O is common. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Gaynel.....one other thing when a partial liver is given.....both parts (donor and recipient's) will regenerate and grow into whole livers in a suprisingly short time. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Gaynel, The UNOS site www.unos.org will give you all types of waiting time statistics. O's are the most common blood type, they are also universal donors which means an O liver could be given to an A or B or AB if the situation is critical This naturally makes the O wait a bit longer, however, they don't like to do this because complications may arise if the liver transplanted is of a different type. The system works such that if he gets sicker his position on the list will be upgraded. Size also matters. Patty -----Original Message-----From: Gaynel508@... [mailto:Gaynel508@...] Sent: Thursday, June 12, 2003 9:05 PM Subject: Re: [ ] saying helloJerry.. Yes, we did find that out---about the 2 livers growing in a short time. My worry is that, if Cliff doesn't get a living donor.; will he have a good chance for O blood type ? What are the odds -for the waiting time for the transplant... if he doesn't get a liver donor.I will have to get tested for my blood type. My mother is A positive, one of my sisters is A positive. If I give blood, they will tell me my blood type. Thanks for your help.Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Gaynel.....O is the most common type ...so his chances are better than Patty's by far...... Right now I wouldn't worry so much his MELD isn't real high comparatively..... I have O blood and I waited 10 mos. before they moved me to the top of the list and I'll guarantee you I was much, much sicker than your husband is...trust me. All things will be all good. Hang in there. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Jerry: How are you today? We are doing ok... Cliff went to his Primary care phys.-- his blood pressure was better today. He has had problem with his voice since January. Has hard time talking-- laringitis. Finally, they recommened him to a specialist. (nose, ear, throat Dr.) he goes Monday. Also, we have not heard about the MRI . He has to have a colonoscopy (wend). I had blood test today, will check my blood type. Should get the results on Monday. Hope you had a good day, and will have a good evening. Love, Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Thanks Gaynel... i hope they can treat Cliff and right away.....re: the colnosopy...tell his doctor he should buy him dinner and give him flowers first if he is going to get that intimate.... They should be able to type your blood immediately it is a fairly simple test.... Hoping for the best and I am sure that will be the case. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Dear Gaynel, It sounds like you guys are heading in the right direction. I had larangitis, too, for about 6 months and nobody ever said why - it started when I had a major lupus and AIH flare. I finally went to the ENT and by the time I got around to it, my horseness went away. It still comes if I get extra tired or if I have an infection. Hope your person gives you something to explain - I'd be interested to hear, too. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2007 Report Share Posted September 3, 2007 Hi Lori, Just letting you know you are in my prayers. I requested that you heal completely so you can have the children you would like to have. I've also asked the Angels to wrap their wings around you and comfort you when you have bad days. Love, Tami saying hello Just wanted to give a shout out to old and new friends at the Samters group. Glad to see it is still going strong and that many of the wonderful contributors are around helping others!I was diagnosed with a second breast cancer early in 2007, so I'm in treatment for that now. Turns out I have what's called the BRCA1 gene mutation for breast cancer, which confers a very high, up to 90 percent, lifetime risk of getting breast cancer, and many women with this mutation do get breast cancer under 35 years of age (I was diagnosed at age 32 in 2002 originally).Anyway I am doing okay -- chemo helps get rid of my Samters symptoms as it shuts down the immune system, plus they put me on dexamethasone, so I don't have a whole lot to complain about in regards to Samters right now. I am not taking any meds for it -- although of course the steroids have an effect, but normally just steroids would not help me.It's funny because aspirin does seem to have a preventive effect in breast cancer, but it's in hormone-receptor-positive breast cancer, which is not the kind that I had. Just a note to those out there wondering about ASA -- I was on aspirin for seven years. I don't feel it had any negative effects on my health. (I don't feel it contributed to the development of my cancer, for example, so don't freak out about that -- that's why I mention the gene mutation that I have). And as some mentioned, I had a very severe, anaphylactic-type reaction to aspirin -- actually not even aspirin, but ibuprofen. I was successfully desensitized twice at Scripps and I was never very scared. They really set you up so at the first sign of a reaction you are treated. If you contrast that to when you take aspirin on your own accidentally, you are not sitting being monitored for your symptoms and the reaction may SEEM to come at the two-hour point - BAM -- but it's really not - there are little changes in heart rate, breathing, other things happening within minutes, and at Scripps they are looking for those changes.I've been off aspirin for five years now since the breast cancer diagnosis, but I still believe I have benefits from having been on the aspirin. I think I might not have lived this long without the desensitization, I was so sick before it.Best to all of you -- I probably won't check in again for a while as I'm dealing with the side effects of my treatment, but always feel free to write me off line.Lori in New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Tami, That was so sweet of you to think of Lori, I will pray for both of you as well. saying hello Just wanted to give a shout out to old and new friends at the Samters group. Glad to see it is still going strong and that many of the wonderful contributors are around helping others!I was diagnosed with a second breast cancer early in 2007, so I'm in treatment for that now. Turns out I have what's called the BRCA1 gene mutation for breast cancer, which confers a very high, up to 90 percent, lifetime risk of getting breast cancer, and many women with this mutation do get breast cancer under 35 years of age (I was diagnosed at age 32 in 2002 originally).Anyway I am doing okay -- chemo helps get rid of my Samters symptoms as it shuts down the immune system, plus they put me on dexamethasone, so I don't have a whole lot to complain about in regards to Samters right now. I am not taking any meds for it -- although of course the steroids have an effect, but normally just steroids would not help me.It's funny because aspirin does seem to have a preventive effect in breast cancer, but it's in hormone-receptor- positive breast cancer, which is not the kind that I had. Just a note to those out there wondering about ASA -- I was on aspirin for seven years. I don't feel it had any negative effects on my health. (I don't feel it contributed to the development of my cancer, for example, so don't freak out about that -- that's why I mention the gene mutation that I have). And as some mentioned, I had a very severe, anaphylactic- type reaction to aspirin -- actually not even aspirin, but ibuprofen. I was successfully desensitized twice at Scripps and I was never very scared. They really set you up so at the first sign of a reaction you are treated. If you contrast that to when you take aspirin on your own accidentally, you are not sitting being monitored for your symptoms and the reaction may SEEM to come at the two-hour point - BAM -- but it's really not - there are little changes in heart rate, breathing, other things happening within minutes, and at Scripps they are looking for those changes.I've been off aspirin for five years now since the breast cancer diagnosis, but I still believe I have benefits from having been on the aspirin. I think I might not have lived this long without the desensitization, I was so sick before it.Best to all of you -- I probably won't check in again for a while as I'm dealing with the side effects of my treatment, but always feel free to write me off line.Lori in New York Shape in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Hello,  I'm Mike,  about 5 weeks ago a small bump appeared on the r side of my neck. After the antibiotics didn't work the biopsy showed some non small cell carcinoma cells. A pet scan several days later showed only that area involved  Heading to Mayo this week for some more testing.  I've gone to a nearly vegetarian diet except for some chicken, eliminated about 99% of white bread , eliminated about 99 % of sugars, no alcohol , don't smoke, no red meat, using  paw paw internally  6 caps a day  chapparral salve on the area 3 to 4 times a day  eliminated nearly all salt  juicing 1 to 2 times a day...  there is chemo and radiation scheduled for about 10 days from now.. to begin...and no surgery.  trying to learn about how to minimize side effects and maximize healing.  picked up some aronia berries yesterday and have had 2 doses of the syrup.  planning to add some asparagus as well.....  other suggestions are welcome...especially if you've got personal experience  I am wary of those who profit while they recommend things... as i am sure you can understand that  it has shrunk some since I first found it and seems somewhat softer...swallowing is easier, and my voice is less stressed  Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Hi Mike: get your vitamin D level checked by Lab Corp. Other labs will not have accurate test results. For fighting cancer your level should be at least 80. Use only vitamin D3 from lanolin to bring your levels up. A good starting point is between 5,000 units per day. Some people need up to 20,000 units per day, testing by Lab Corp is the only way to know for sure. There is no fighting cancer with low levels of vitamin D. My wifes alternate cancer doctor wants her level to be close to 100. She is taking 10,000 units of D3 per day and a spray vitamin D3 which bypasses the digestive system in case not enough is absorbed that way. She uses 5,000 units of the spray. Selemiun is also a key. As least 100 mcg per day. Too much can be toxic. 200 to 300 mcg are a safe limit. Spirulina 4 grams per day Probiotics 3 x per day use only a high quality probiotic cheap ones just do not work. primal defense is a good one. Some folks have success with black salve. Vit C and fish oil 5,000 mg per day, use perque brand of vit c far infrared sauna, Hyperthermia Proteolitic enzymes more info on CS http://www.happyherbalist.com/aidsandhiv.htm  to learn how to limit damage from chemo and radiation get the book Beating Cancer with Nutrition by Quillin. There are also tips that help to make these treatments more effective if you decide to go that route. Check in to the book 4 diets for 4 blood types as well. Some believe certain food in the diet can allow the immune system to recognize cancer. Other foods like some of those you mentioned feed cancer. Vic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Hi Vic,  Many thanks to you. I've got some d3 and will add it to my regimen... heading to Mayo today.  heard of the black salve... don't have any yet.. prioritizing my money.  I take fish oil daily about 1200 mg.. can up the dose  c I have taken though I've backed off as it is specifically said to counteract the paw paw..  reasoning is that paw paw lowers the ca cells metabolic rate which causes them to die off as they fall apart they release free rads that speeds the process of cell death the c scavenges the free rads thus counteracting the die off process by lightening the free rad load on those cells..  they say a multi is ok but " high " c levels are not ok.   not sure what " high " means though  Mike --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Hi Mike, Mike, cancer is defeated by two things, alkaline levels of 7.35 or better for your body (saliva test) and oxygen, active oxygen is best, do a little research online and you will find alot of info. As far as what you are doing, is excellent for raising pH. Vitamin D3 is major part of Oxidizing the cancer and very important to maintain high levels. Lab test will tell where your at. As for the cancer, if it is already getting softer, it should also be getting larger because it is dying. Keep going with what you are doing and get some active oxygen in your system. Do not agree to any surgery!!! I also recommend a real good imune booster if you go ahead with chemo. ( Del Imune ) on the web. God Bless You Russ [ ] saying hello > Hello, >  > I'm Mike, >  > about 5 weeks ago a small bump appeared on the r side of my neck. After the antibiotics didn't work the biopsy showed some non small cell carcinoma cells. A pet scan several days later showed only that area involved >  > Heading to Mayo this week for some more testing. >  > I've gone to a nearly vegetarian diet except for some chicken, eliminated about 99% of white bread , eliminated about 99 % of sugars, no alcohol , don't smoke, no red meat, using >  > paw paw internally  6 caps a day >  > chapparral salve on the area 3 to 4 times a day >  > eliminated nearly all salt >  > juicing 1 to 2 times a day... >  > there is chemo and radiation scheduled for about 10 days from now.. to begin...and no surgery. >  > trying to learn about how to minimize side effects and maximize healing. >  > picked up some aronia berries yesterday and have had 2 doses of the syrup. >  > planning to add some asparagus as well..... >  > other suggestions are welcome...especially if you've got personal experience >  > I am wary of those who profit while they recommend things... as i am sure you can understand that >  > it has shrunk some since I first found it and seems somewhat softer...swallowing is easier, and my voice is less stressed >  > Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 A question regarding oxygen and cancer: do you think the deep abdominal breathing that is the core of qigong, tai chi chuan, yoga and other energy arts--which teaches one to fill the lungs from the bottom up, utilizing full capacity, would be effective in this regard? From: runion@... <runion@...> Subject: Re: [ ] saying hello Date: Wednesday, January 5, 2011, 1:06 PM  Hi Mike, Mike, cancer is defeated by two things, alkaline levels of 7.35 or better for your body (saliva test) and oxygen, active oxygen is best, do a little research online and you will find alot of info. As far as what you are doing, is excellent for raising pH. Vitamin D3 is major part of Oxidizing the cancer and very important to maintain high levels. Lab test will tell where your at. As for the cancer, if it is already getting softer, it should also be getting larger because it is dying. Keep going with what you are doing and get some active oxygen in your system. Do not agree to any surgery!!! I also recommend a real good imune booster if you go ahead with chemo. ( Del Imune ) on the web. God Bless You Russ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 That is great info Russ, if your Alkaline at 7.3 you will most likely not get cancer. If you have a lot of stress in your life , which is the major cause of cancer. Then learn to meditate, work at relaxing the whole body everyday Your Health Crusader ________________________________ From: " runion@... " Sent: Wed, January 5, 2011 Hi Mike, Mike, cancer is defeated by two things, alkaline levels of 7.35 or better for your body (saliva test) and oxygen, active oxygen is best, do a little research online and you will find alot of info. As far as what you are doing, is excellent for raising pH. Vitamin D3 is major part of Oxidizing the cancer and very important to maintain high levels. Lab test will tell where your at. As for the cancer, if it is already getting softer, it should also be getting larger because it is dying. Keep going with what you are doing and get some active oxygen in your system. Do not agree to any surgery!!! I also recommend a real good imune booster if you go ahead with chemo. ( Del Imune ) on the web. God Bless You Russ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Deep breathing is certainly helpful, as most people don't breathe as deep as they should. Getting extra oxygen is more benificial, something that would be like Excersise With Oxygen Therapy, you can find this subject online and much more. russ From: rcellal Sent: 1/5/11 > A question regarding oxygen and cancer: do you think the deep abdominal breathing that is the core of qigong, tai chi chuan, yoga and other energy arts--which teaches one to fill the lungs from the bottom up, utilizing full capacity, would be effective in this regard? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Hello, Mike, Since your methods may have caused the lump to change (and possibly start shrinking) does that encourage you to continue with natural methods before submitting to the chemo and radiation? Also, have they determined exactly how the lump is being encased - is it in your lymph nodes, or in the skin, or where? > > Hello, >  > I'm Mike, >  > about 5 weeks ago a small bump appeared on the r side of my neck. After the antibiotics didn't work the biopsy showed some non small cell carcinoma cells. A pet scan several days later showed only that area involved >  > Heading to Mayo this week for some more testing. >  > I've gone to a nearly vegetarian diet except for some chicken, eliminated about 99% of white bread , eliminated about 99 % of sugars, no alcohol , don't smoke, no red meat, using >  > paw paw internally  6 caps a day >  > chapparral salve on the area 3 to 4 times a day >  > eliminated nearly all salt >  > juicing 1 to 2 times a day... >  > there is chemo and radiation scheduled for about 10 days from now.. to begin...and no surgery. >  > trying to learn about how to minimize side effects and maximize healing. >  > picked up some aronia berries yesterday and have had 2 doses of the syrup. >  > planning to add some asparagus as well..... >  > other suggestions are welcome...especially if you've got personal experience >  > I am wary of those who profit while they recommend things... as i am sure you can understand that >  > it has shrunk some since I first found it and seems somewhat softer...swallowing is easier, and my voice is less stressed >  > Mike > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Just wanted to add - I hear a lot of people saying that they don't trust any products or treatments where the promoter might be turning a profit - but isn't that what doctors and hospitals do? Turn a profit? It's just funny to me that we won't trust, say, an herbalist who needs to charge a nominal fee to pay for the herbs and packaging, but may have a very good product - but we will give hundreds of thousands of dollars to doctors who may or may not just be taking a guess. It's not fair to assume that just because someone charges that they are a fluke, we can't expect them to come out of their own pocket to pay for products and give them away, but I've read people say, if its a cure for cancer, they should be giving it away. But we don't say that to our doctors or the people at the hospital, and they are asking for $50 per Tylenol pill! And they certainly aren't giving away chemo, no matter how much they say it will help you. Be skeptical of those trying to get rich or put pressure on you to trust them and not do your research, but don't use free/not free as your measuring stick. traster wrote: > .....I am wary of those who profit while they recommend things... as i am sure you can understand that > Â Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 As I've written before--pharma companies are more than frightening in their greed. But the obverse also can be true: alternative practitioners are also subject to the human condition. I find it distressing when an alternative practitioner adheres to a theory--and can't be shaken, accusing oncologists of being on the take--then offers her products at a good buck to support her paradigm. I understand why no sane person wants to undergo chemo: I did it four times, two bone marrow transplants. It's frightening and beyond debilitating (especially the high-dose chemo of transplants, which makes " ordinary " chemo seem like Tylenol). I did the chemo route because with stage four lymphoma I didn't have time to investigate, especially in the early nineties when laetrile, and shark cartilage, were the main choices (worthless). That's why I went into qigong--the mind/body connection--as an adjunct. Attempting to tap my body's " inner pharmacy. " It takes practice, persistence and patience. One has to do it on one's own. One thing I find distressing in the alternative world mirrors the attitudes patients have with allopathic medicine: just give me the " magic " pill, cure me, then I can go on with my life. If only things were that bloody easy. Just wanted to add - I hear a lot of people saying that they don't trust any products or treatments where the promoter might be turning a profit - but isn't that what doctors and hospitals do? Turn a profit? It's just funny to me that we won't trust, say, an herbalist who needs to charge a nominal fee to pay for the herbs and packaging, but may have a very good product - but we will give hundreds of thousands of dollars to doctors who may or may not just be taking a guess. It's not fair to assume that just because someone charges that they are a fluke, we can't expect them to come out of their own pocket to pay for products and give them away, but I've read people say, if its a cure for cancer, they should be giving it away. But we don't say that to our doctors or the people at the hospital, and they are asking for $50 per Tylenol pill! And they certainly aren't giving away chemo, no matter how much they say it will help you. Be skeptical of those trying to get rich or put pressure on you to trust them and not do your research, but don't use free/not free as your measuring stick. Quote Link to comment Share on other sites More sharing options...
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