CancerCompass message board discussion started by GillyB on 2/9/2008 http://www.cancercompass.com/message-board/message/all,20780,0.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/ Please can anyone advise us as to what my partner could take to boost his immune system. He has been diagnosed with smouldering myeloma and i understand he should not take echinacea.Many thanks for any helpGillian. GillyB Sat, 09 Feb 2008 00:00:00 GMT Hi GillyWhen you have cancer Echincea ,would'nt do the job anyway . The most powerful immun support I know of is Beta Glucan1,3D. You can read about it at Bill Henderson's sitehttp://www.beating-cancer-gently.com/nl104.htm http://www.AboutBetaGlucan.com/bspecial.asp Also you can look into a product called Cancema. They have cancer bundle's for many different types of cancer. They have one for bone cancer as well. I giving they product for my 10 yo son and he is doing , well on it.http://www.bloodrootproducts.com/cansupp2.htm Sutherlandia OPC Extract is another thing has positive effect on bone cancer.http:www.sutherlandiaopc.com/Anvirzel was the original formula they run clinical tryals on OPC is a new improved formula. http://www.fda.gov/cder/warn/mar2000/dd03500.pdf  http://www.bodyandmind.co.za/merchant_nc.php?pid=901&ste Hope you will find some of this helpful.Best regards to you and your husbandLiz  Timmys Brain stem glioma Sat, 09 Feb 2008 00:00:00 GMT Hello Gillian Here are some immune boosters which are recommended for a variety of cancers. High doses of ascorbic acid are also highly recommended by my healthcare givers. I have used all of these natural substances with good results. ____________ CURCUMIN http://www.goodhealth.nu/News_Articles/050111-curcumin-anti- AHCC http://www.ahccpublishedresearch.com/wwwroot-ahcc/studies/AH VITAMIN C http://www.anelloclinic.com/healthinfo/vitamin%20c.html ___________________ Copyright (C) 2007 PR Newswire. All Rights Reserved In clinical cancer trials, Avemar was shown to reduce the progression of disease in patients with head and neck cancers, colorectal cancer, and malignant melanoma of the skin. The quality of life of patients with breast cancer or lung cancer improved significantly (P On 2/9/2008 GillyB wrote:Please can anyone advise us as to what my partner could take to boost his immune system. He has been diagnosed with smouldering myeloma and i understand he should not take echinacea.Many thanks for any helpGillian. Shemay Sat, 09 Feb 2008 00:00:00 GMT If a person has smoldering myeloma you want to use supplements that not only boost the immune system, but also target myeloma specifically. The most studied products for MM are:Curcumin, Resvertrol, Fish Oil, AHCC, Proteolytic Enzymes (WobenzymN) and Zyflamend. Those are the big six for myeloma.I would also include an alkaline based diet and plenty of exercise. Both of these help create an environment that is more difficult for the cancer to develop.Best regards.Craig  photog Sun, 10 Feb 2008 00:00:00 GMT  And lots of CoQ10. Vegetable juice made daily: Carrot/Apple/elerycarrot/spinach/apple.  2 Beets/1 apple help cleanse the liver. Liver is important in the fight on immunity. MMSOn 2/10/2008 photog wrote:If a person has smoldering myeloma you want to use supplements that not only boost the immune system, but also target myeloma specifically. The most studied products for MM are:Curcumin, Resvertrol, Fish Oil, AHCC, Proteolytic Enzymes (WobenzymN) and Zyflamend. Those are the big six for myeloma.I would also include an alkaline based diet and plenty of exercise. Both of these help create an environment that is more difficult for the cancer to develop.Best regards.Craig   mmsurvivor Sun, 10 Feb 2008 00:00:00 GMT  On 2/10/2008 mmsurvivor wrote: And lots of CoQ10. Vegetable juice made daily: Carrot/Apple/elerycarrot/spinach/apple.  2 Beets/1 apple help cleanse the liver. Liver is important in the fight on immunity. MMSOn 2/10/2008 photog wrote:If a person has smoldering myeloma you want to use supplements that not only boost the immune system, but also target myeloma specifically. The most studied products for MM are:Curcumin, Resvertrol, Fish Oil, AHCC, Proteolytic Enzymes (WobenzymN) and Zyflamend. Those are the big six for myeloma.I would also include an alkaline based diet and plenty of exercise. Both of these help create an environment that is more difficult for the cancer to develop.Best regards.Craig  Absolutely. Both the liver and kidney function are very important while treating myeloma. My wife (I forgot) also takes liquid Milk Thistle for her liver and several homeopathic remedies for both the liver and kidney. Very important. As a result, both her liver and kidney function have stayed very strong for the 1+ years since diagnosis and chemo.Regards,Craig   photog Mon, 11 Feb 2008 00:00:00 GMT Hi Gilly ~~  I'd just like to add one more to your list, namely Odourless Garlic Tablets.  Garlic has long been known as natures antibiotic, and I have found that with all the treatment I have had for Myeloma I have ended up very suseptable to catching any and everything thats going around!  By taking the Garlic tablets I have boosted my immunity which protects me from getting sick.  Without it I know that I would have been very sick a long time ago.  My oncologist told me at the very beginning that I would NOT DIE of Myeloma, it would be pneumonia or an infection which medicine would not be able to stop. I have now seen this with several Myeloma patients so I am very religious about taking my Odourless Garlic Tablets!!  And of course, because they are odourless you don't taste them and you don't smell of garlic -- what could be better!!  Gilly you are doing the right thing in gathering all this information before starting treatment -- I am so impressed and wish that I had done the same before it all started for me almost 5 years ago.  Well done - he is very blessed to have you on his 'team'!!  Take good care, Cath poppy/cath Tue, 12 Feb 2008 00:00:00 GMT  On 2/9/2008 GillyB wrote:Please can anyone advise us as to what my partner could take to boost his immune system. He has been diagnosed with smouldering myeloma and i understand he should not take echinacea.Many thanks for any helpGillian.Gillian,I did not take the time to read all the replys but I did notice Beta Glucan was mentioned. I personally was diagnosed with MM last summer and then a second opinion (which I trust) put me in the smouldering/MGUS catagory.  My initial abnormal plasma cell count last summer from the bone marrow biopsy, put me at 28%.  The last six months of my life I have: lowered my stress significantly, gotten lots more sleep each night, and started taking Beta Glucan every day (3 months ago) and B12 shots (2 months ago). The B12 helps tremendously with my stamina and energy level and I truly believe the Beta Glucan has helped with boosting my immune system.  I feel a world different then I did a year ago.  One year ago I was so incredibly tired and I was sick for 1 1/2 months last winter with virus/bacterial (?) infection.  I also take lots of natural antifungals supplements.In addition to the above I eat: hardly any grains (only on occasion), hardly any dairy, no sugars (except in fruits).  I eat lots of vegetables, fruits, raw fresh nuts (without mould), lots of home cooked beans and smaller proportion of meat (fish, chicken and some grass-fed beef).  I believe eggs are good too, but I don't eat them because they cause skin reactions on me.Even though I only got diagnosed this last summer the last three years of my life I was feeling worse and worse, getting sicker and sicker (despite not being over-weight and only being in my early 40s).  I have cut grains and sugars out of my diet little by little over the last three years.  My non-stop yeast infections have finally stopped (six months now) and my latest bone marrow biopsy showed the abnormal plasma cells at about 10% instead of the 28% from last summer.  I feel so much better (despite still being a busy 43 year old mother of two young girls ages 5 and 9).  I don't know what the answer will be for your loved one but I highly recommend: Beta Glucan, anti-fungals, adjusting diet to include less sugars and man made carbs in general and talking to the doctor about B12 shots.  Sometimes our bodies can't absorb the B12 on it's one.  Getting enough sleep, lowering stress and walking have been helpful for me.  Hope this helps. Karen momkaren Tue, 12 Feb 2008 00:00:00 GMT  Good Evening Cath;"My oncologist told me at the very beginning that I would NOT DIE of Myeloma, it would be pneumonia or an infection which medicine would not be able to stop. I have now seen this with several Myeloma patients."I recall you mentioning this before and have forgotten to question you on this. Are you saying that MM is similiar to AIDS in that the immune system is compremised and therefore susceptable to any exposed virus? I can understand this while taking chemo as that lowers our white cells. But my Dr. told me my demise would probably be from renal failure as the kidneys just can't keep up with the protein levels produced. Now believe me Cath, I don't want to start such a macabre topic as our deaths, but you have sparked my interest. Besides, I have plans on being on the cover of the Medical Journal.Comments please;Kevin K. C. Tue, 12 Feb 2008 00:00:00 GMT Hi Kevin -- I agree with what both doctors have said -- I think that mine was focusing on 'infection' in a very general way and meaning kidney failure as well as the kind of bugs which attack someone with a compromised immune system.  From the way my own situation is being managed, in that I have monthly medical appointments, I haven't even begun to contemplate a time when I won't have some sort of treatment happening.  Maybe thats fatalistic, I don't know, but I'm still in the realm of thinking that I will always have some level of myeloma in my system.  Treatment, in my case, has been  aimed at slowing down the progression but not at completely ridding me of the disease.  Treatment, whether Revlimid, Velcade, Thalidomide,VAD, Cyclo, Radiation, Aridia -- you name it, has worked in the sence that my paraprotein has been 'stable' for a very long (relatively speaking!) time down from 90 to 8.  But during that entire time my immune system has been compromised and I have been neutropenic and suseptable to any and all bugs around.  Fortunately I have only succumbed once, but it took 3 very high powered antibiotics over 7 days to kick in to rid me of pneumonia -- something which would have previously happened within 24 hours!  In your case, facing a transplant, perhaps the outlook is different.  Perhaps ALL of the Myeloma will eventually be gone and you will one day be 'normal' again, with no hint of MM -- wouldn't that be wonderful?!  I don't know if that is a real possibility or not for you, but I do know that it is not possible for me. At this point in time medicine won't totally rid me of myeloma, which does mean a compromised immune system for the rest of my life.  I hope that you do make the front cover of the Medical Journal -- wouldn't that be the day!!  What celebrations by the whole Myeloma world!! From what you have said about your transplant it certainly sounds like you have the best chance of all and I do so pray that it works the way you want it to!  My thoughts and prayers are with you!! Best wishes always, Cath poppy/cath Tue, 12 Feb 2008 00:00:00 GMT Good Morning Cath; "In your case, facing a transplant, perhaps the outlook is different.  Perhaps ALL of the Myeloma will eventually be gone and you will one day be 'normal' again, with no hint of MM but I do know that it is not possible for me. At this point in time medicine won't totally rid me of myeloma."Thanks for your informative response!  (I'm not certain that my SCT will rid me of all the cancer cells however.) But reading your previous post made me think how ironic it would be to survive MM only to succumb to the common cold. Take care;Kevin K. C. Wed, 13 Feb 2008 00:00:00 GMT Thats why I practice 'defensive living' Kevin~~  In that I schedule the first medical appointment of the day to avoid as many bugs as I can at the doctors office, go shopping early in the morning to avoid crowds of people, choose to go to the movies when fewer people will be there( shades of Outbreak where one person sneezes in a theatre and everyone is exposed to the bugs!), do not visit people who are ill, Bob will not allow anyone with any illness inside our home! - grandchildren included, but they understand why and will telephone to talk with me if they have a cold or the flu!(yes, there are ways around it!), and finally -- I up my intake of odourless garlic tablets if  I feel anything coming on to boost my natural immunity!  I'm a bit paranoid about it, but its worked for the past 4 years and the only times that I have become ill have been when I have broken my own rules and gone to visit someone in hospital or played with a baby with a runny nose!  Stupid perhaps, but there are just some times when one has to take a chance, don't you think???  Those around me know what is happening and protect me fiercely - sometimes too much I feel, but I am grateful for their help.  I just don't want some silly little bug to be the cause of my demise, its as simple as that.    You know what the hardest thing of all to do is??? Its greeting and saying goodbye to people -- because here in Australia the 'norm' is to kiss one another on both cheeks when you meet and when you leave.  If you don't do it, people think that you are 'cold' or aloof or think that that you are 'better' than they are.  Its a hard call to know when, where and how you will do these things and when to draw the line.  So far I think I'm doing fairly well, but there are instances when I question myself.  Good luck with the chemo over the next few days.  I do hope its not too bad.  Take good care, Cath poppy/cath Wed, 13 Feb 2008 00:00:00 GMT Hi Kevin! What we can plan for and what we can't -- I thought I had all possibilities covered and then on Tues. night I suddenly had excruciating pain -- left flank!  After CT scan and x-ray plus blood work the doctors decided that I have a 'large' 2cm (could that possibly be right, maybe they meant 2mm) kidney stone.  I had never considered this happening, but here I am, a day later with a 'stent' in my kidney and now facing some treatment that will 'blast' my stone into hopefully millions of tiny particles!  This myeloma journey is really amazing -- who knows what will happen next?!?  So I'm back on 500mg of Keflex to cover any kidney infection, scheduled to go into hospital again next week --- I really am beginning to feel that I am living a medical life -- two weeks ago it was supposedly osteonecrosis, now its kidney stones, whats next and when does it end???  Oh well, onwards and upwards -- we'll see how the next 'procedure' goes!!How have the preparations gone for your transplant??  When does the next step take place??  I am looking forward to seeing you as 'cover man' on the Medical Journal as a miracle man extrordinaire -- the man who really investigated and researched all options before making an informed choice about the treatment that would best suit his circumstances, rather than just going with the flow without question or consultation.  Hope to hear from you soon, Cath poppy/cath Fri, 22 Feb 2008 00:00:00 GMT In my experience one of the best ways to boost your immune system is beta-1 3-d glucan.  I buy mine from a pharmacist who does compounding because he does not  purchase it from China.   I have tried other beta-1 3d glucan and not knowing where it is bought from - it has not worked well.  My neutrophils were very low and my platelets were in the 90,000 range.  The pharmacist told me it would be 6-9 months before I noticed a change in my blood counts.   It took about 3-4 months.   I take 5-6, 500 mg each day and spead them out over the day.   It is really designed to help the white blood cells.  I am glad I take them, it has changed my wbc count as the neutrophils were getting dangerously low.  Be careful where you buy the beta-1 3-d glucan, some is very pure form and some is junk.Helen HelenHi Sun, 23 Mar 2008 00:00:00 GMT  On 3/23/2008 HelenHi wrote:In my experience one of the best ways to boost your immune system is beta-1 3-d glucan.  I buy mine from a pharmacist who does compounding because he does not  purchase it from China.   I have tried other beta-1 3d glucan and not knowing where it is bought from - it has not worked well.  My neutrophils were very low and my platelets were in the 90,000 range.  The pharmacist told me it would be 6-9 months before I noticed a change in my blood counts.   It took about 3-4 months.   I take 5-6, 500 mg each day and spead them out over the day.   It is really designed to help the white blood cells.  I am glad I take them, it has changed my wbc count as the neutrophils were getting dangerously low.  Be careful where you buy the beta-1 3-d glucan, some is very pure form and some is junk.Helen Thanks HelenI am finding beta-1 3d glucan difficult to track down. We are in England I don't know if this has anything to do with it, but so far none of our pharmacies seem to know anything about it!I found a couple of web sights and emailed them but still wait for a reply.Thanks again, best wishes Gillian. GillyB Mon, 24 Mar 2008 00:00:00 GMT Hi, I'm not sure if I can post a web address for the place where I buy the Beta Glucan I use.  But, you could do a google search with words: NSC and Beta Glucan.  The website mentioned international ordering.  I use the extra strength kind.  Generally one a day, but right now my 2 girls have had the flu this last week so I'm using 2-3 a day. I feel the hint of nasal issues the last few days, but I have not gotten sick.  I'll let you know if I bypass this flu.I've only been using this Beta Glucan since last October, and I'm not sure what did it but this has been my experience.Last August, my first Bone Marrow Biopsy showed an average of 28% plasma cells.  I continued my very low to no-grain diet and started the Beta-Glucan in Oct.  In Nov. my doctor started me on B12 shots.  Ten in a row, daily, and then one every 3 weeks since.  In January I had a second Bone Marrow Biopsy and my average count of plasma cells was 10%.  I don't know for sure how the plasma cells dropped, but those are the only two things I've added other than lowering my stress and finally getting enough sleep.  Maybe it's the later; I don't know.  I also use lots of digestive enzymes with my meals and eat no dairy, no corn, no peanuts, practically no grains or soy and very little meat, mostly wild caught salmon and tuna with no soy additives.  I eat lots of raw fresh nuts, lots of vegetables via homemade salads and homemade salad dressings and homemade bean soups and fair amount of fruit. I eat some almond butter and cashew butter too with organic apples or other fruit, but I try not to eat a lot of the nutbutters.  It's my quick snack.  Homemade bean dips with veggies are quick snacks for me too.I'm not sure if the Beta Glucan helped, but I'm still using it.My experience for what it's worth,Karen  momkaren Mon, 07 Apr 2008 00:00:00 GMT