CancerCompass message board discussion started by Marsha B. on 2/1/2005 http://www.cancercompass.com/message-board/message/all,1537,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My name is Marsha. In 2000 I was diagnosed with pancreatic cancer. After having the Whipple procedure and chemo (5FU) and radiation I stopped the treatments because of the adverse reactions I was having. In 2002 my tumor marker started to rise again and I underwent another chemo treatment called gemcitabine (gemzar) and had to stop (against my desires) in Sept of 2004. My tumor marker was normal (I went from the high end of 1000, to 33) Unfortunately, I had to stop has my bone marrow was saturated and to put it easily, it wasn't working anymore. Now, within the last couple of months, the cancer has spread to my lungs, liver and bones. I cannot find anything for any kind of treatment for "secondary cancers" (like bone cancer). I am on many different medications and a few different pain medications. However, the pain medications (vicodin, neurotin, and more recently the morphine patch) are not doing anything for the pain in my ribs (where the tumors are growing). Does anyone know of anything out there that will help treat this kind of cancer and pain? Anyone with any suggestions would be helpful. I pray everyday continuously (I would not have survived this long if I didn't) the doctors can't believe i have survived this long. I am taking all kinds of vitamins and have tried a mushroom extract called AHCC. It is supposed to help your immune system. When i was on the gemzar treatments, i at least had some quality of life. Now, i can't even get out of bed most of the time because of the pain. Is there anyone with any ideas? Any response will be appreciated. Thank you Marsha B. Tue, 01 Feb 2005 00:00:00 GMT Marsha my prayers are with you.This disease is so unpredictable and life changing.There is so much info and it is so mind boggling.Prayer is the best help.There seems tombe so much about alternative treatments but there is just no way to know what works.My husband is fighting esophageal Ca which has metastasized to spine and brain,liver and lungs.Chemo has given him numbness in his legs making it difficult to walk and radiation and the cancer has madeit neccasary to have a permanent catheter and his thinking is not what it was.He just turned 57.We use the cottage cheese 3 Tblsps and flaxseed oil 1-2Tbls twice a day.It helps to add garlic pd for flavor.We also do fresh carrot and apple juice.We try to eat fresh fruits and veg.I also have him take CellForteMax 7 capsules twice aday.I get them at GNC.He also takes 6000-8000mg vitc.All of this gets very expensive and insurance will not pay for it.It just doesn't seem fair.I will keep you in my prayers,God does have a plan and sometimes its so hard to keep positive.Bless you,Donna Donna H. Tue, 08 Feb 2005 00:00:00 GMT Marsha. I too am suffering from bone pain from cancer that has spread from my kidney. After visiting my 4th oncologist, he suggested pain management clinic. I have been requesting this from the others for a long time. But the one thing that stands out with this oncologist ordering pain management, he has suggested a pain pump. Wish I could give you a lot more information on this, but awaiting my first appointment but would certainly be willing to let you know more after that time. Keep up your strength, pop those pills to help you keep moving and eating. help is out there just hard to find. let me know if you are interested in more information in the future. e-mail is GOREJC@aol.com Carroll G. Tue, 08 Feb 2005 00:00:00 GMT My father (age 74) has liver cancer with mets to his spine. He seems to do well with oxycontin every 12 hours and oxycodone for breakthru pain every 4 to 6 hrs. He also uses those small heat pads (Thera ??) for his lower back. As far as treatment, he is about to start Thalidomide (aka Thalomid) a very mysterious and controversial drug that caused birth defects in the 1950's. He's currently doing radiation to his spine. The clinical trial chemo he did for his liver did not pan out. My prayers are with each of you. Jill j. Mon, 14 Feb 2005 00:00:00 GMT Dear Carroll G: I received your message, and it corrolates with the same suggestion given to me by a new oncologist I saw at Fox Chase Cancer Center in Philadelphia. I don't want anything placed under my skin, but I was told they can't do anything more for me (chemo-wise, etc.) until they get the pain under control. So, yes, I'd be more than interested in receiving any more information and/or messages you can provide me after you get more information from your health care providers. I'll pray for you as well while we travel this journey that God gives us the grace, love, power and strength to get through this. May God Bless You and your family Marsha S. B. Marsha B. Tue, 22 Feb 2005 00:00:00 GMT Dear Marsha B: glad to hear from you. I have just returned home from getting the SynchroMed Programmable pump put in. I cannot tell you how wonderful I feel. the pain was gone immediately and I have yet to be in such awful pain as I was. The only pain I have now is localized in the sutured area which will certainly be gone within a week or two, so please don't say no to the pump yet. Carroll Carroll G. Wed, 23 Feb 2005 00:00:00 GMT I too have pain from cancer that has spread from my bladder. It has spread to my SI joint in my hip and two verterbrae (C7 and T2). I am only taking vicodin as I am a stay at home mom of two small children and choose not to be "drugged up". My chemotherapy constists of cisplatin, 5FU, and leukavorin which has helped shrink the tumor in my bladder and the surrounding lymph nodes, but not the bone cancer. What chemo regimen is everyone else using? I am switching doctors this week and I'm sure he will also be switching my chemo. As for the pain, I feel for you. My only advice is to try exercising, if you are able. Walking is wonderful. If you can get your heart rate up, your brain will release endorphines which are natural pain killers. Dawn3330 Mon, 28 Feb 2005 00:00:00 GMT I have Myelofibroses and am in slight pain as of now. I understand that once the fiber pushes it's way into my long bones, the pain will be very bad and hard to treat. This Synchro Med Programable pump sounds like something that might help me. Can you tell me a bit more about it? Thanks, Melanie B. Beloved49 Mon, 25 Apr 2005 00:00:00 GMT Dear Marsha: I was diagnosed with a tumor in my left breast July 22, 2002. I had a lumpectomy followed by brachytherapy, a high dosed radiation therapy performed by Dr. Kelly at the Cancer Treatment Center of America, Tulsa then chemo therapy for the next four months. Cytoxin, Adriamyacin, a steroid and anti-nausea medication. Last August I was told the numerous tests taken at the CTCA, Tulsa were unnecessary because the margins were all clear and the lymph nodes checked were clear. In February I was diagnosed with breast cancer metastasized to the bone and marrow. A bone scan showed it in my thigh bones, pelvic area, lower spine, ribs and skull. I am being given Zometa (a cousin to Fosamax which keeps the bones from sloughing off too fast)intraveniously, and take Femara every day, orally. Monday I go for the fourth infusion of Zometa and a check to see where the tumor markers are in my blood. I don't know what I am facing after that. I don't seem to be able to find much about this kind of cancer. People don't seem to have much to say about it. If you find out anything else about it please contact me, OK? Thank you and God be with you all. He is the Lord that heals, and He is no respector of persons. What He does for one He will do for all. That is where my faith is and will stay. I have none in doctors, or medication. Other that what God can do with it. I also take herbs, vitamins and minerals. I try to eat fresh vegys as much as possible and the right kind of fats with a low carbohydrate intake. I take Olive Leaf extract and Grape Seed extract along with a live (kept under refrigeration) probiotic and a capsule called Proloftin for stress. I am not in much pain, I have back problems and was diagnosed with Fibromyalgia in 2000 which is very painful all the time. It even seems better since I have been taking the Proloftin. If you are interested in these alternatives you can find them on a website named, knowthecause.com. I really am impressed with Doug Kaufman's explanation of cancer and other major diseases. I hope this helps you some. God bless, Louise M. Cathleen Louise M. Wed, 04 May 2005 00:00:00 GMT Dear Marsha, I love cancercompass, much more informative and interesting than many UK web sites. I had breast ca in 1996 then bony secondaries in 2001. The pain was all enveloping. I was admitted to a London Hospital for pain control for about two weeks and given morphine. I was titrated to 240mg and Zombie yes! I was also given domperidone for the nausea. I had a zap of radiotherapy to the pubic bone but declined a zap to the left pelvis as I have diverticulitis and was told the zap could stir things up and I have had a few 'flares' of diverticulitis but generally keep it under control, lots of veg, fruit and wholemeal bread. I've deviated -sorry. Remember if you have a zap of radiotherapy there is an entry and exit point to the beam so what is sandwiched inbetween can be affected by the radiotherapy beam, sometimes for the good and others not. Then I was put on pamidronate and later Zometa. The first caused a pain flare for a few days but three weeks later I was driving and back at work though did fall asleep about 8.30 in the evening and slept 'til 7 the next day. My waking hours were very good though. From the very first severe pain to back to work and feeling 'ME' again was about 5 weeks. After about a 3 months the pain was well controlled but I then felt over-opiated (increasing drowsiness during the day time) so I reduced the morphine MST 12 hour slow release tablets and by about 9 months was taking about 120mg morphine. My condition improved so much that I continued to decrease the morphine guided through this by the pain clinic I reduced 10mg every 3 weeks and now I am on 10mg MST at night only. Morphine works very well for some and not for others, I can only tell you that it worked well for me except for the Zombie effect at the beginning. Maybe you just need to see it through, accept that you will be a zombie for a while but your body will aclimatise and YOU will come out the other side. I was on Tamoxifen, then arimidex, and now 4 weekly injections of faslodex (not pleasant, and fomally in alternating buttuck but now I have the shots into the upper thigh and no pain or injection site soreness.) I also take arimidex/placebo as it's a clinical trial. I do not have any cancer sites in the soft tissues so can't suggest anything for you. Something very pleasant now - I read somewhere that chocolate raises your immune system, I think it was Miami university research but have just looked and cannot find it. Also green tea tablets are one of the highest anti-oxydents available and not expensive and turmeric and brocolli tablets or the real thing are anti cancer. Coral calcium is supposed to be best for cancer in the bones and it also makes your system slightly alkaline - a very good thing as cancer likes an acid environment. Unfortunately there doesn't seem to be the same support for secondaries in the way primaries are. I think this ought to be addressed but how is another matter. My thoughts are with you and wish you continued pain free sunny days, Velvet Velvet Tue, 02 Aug 2005 00:00:00 GMT  On 5/4/2005 Cathleen Louise M. wrote:Dear Marsha: I was diagnosed with a tumor in my left breast July 22, 2002. I had a lumpectomy followed by brachytherapy, a high dosed radiation therapy performed by Dr. Kelly at the Cancer Treatment Center of America, Tulsa then chemo therapy for the next four months. Cytoxin, Adriamyacin, a steroid and anti-nausea medication. Last August I was told the numerous tests taken at the CTCA, Tulsa were unnecessary because the margins were all clear and the lymph nodes checked were clear. In February I was diagnosed with breast cancer metastasized to the bone and marrow. A bone scan showed it in my thigh bones, pelvic area, lower spine, ribs and skull. I am being given Zometa (a cousin to Fosamax which keeps the bones from sloughing off too fast)intraveniously, and take Femara every day, orally. Monday I go for the fourth infusion of Zometa and a check to see where the tumor markers are in my blood. I don't know what I am facing after that. I don't seem to be able to find much about this kind of cancer. People don't seem to have much to say about it. If you find out anything else about it please contact me, OK? Thank you and God be with you all. He is the Lord that heals, and He is no respector of persons. What He does for one He will do for all. That is where my faith is and will stay. I have none in doctors, or medication. Other that what God can do with it. I also take herbs, vitamins and minerals. I try to eat fresh vegys as much as possible and the right kind of fats with a low carbohydrate intake. I take Olive Leaf extract and Grape Seed extract along with a live (kept under refrigeration) probiotic and a capsule called Proloftin for stress. I am not in much pain, I have back problems and was diagnosed with Fibromyalgia in 2000 which is very painful all the time. It even seems better since I have been taking the Proloftin. If you are interested in these alternatives you can find them on a website named, knowthecause.com. I really am impressed with Doug Kaufman's explanation of cancer and other major diseases. I hope this helps you some. God bless, Louise M. Dear Louise M,Your story could be mine.  In 2000 I was diagnosed with breast cancer in my left breast.  It was only beginning at the time.  I had a lumpectomy and they took 22 lymp nodes and said it looked good.  I too had cytoxin chemo treatments. After I was put on tamoxfin for 2 years.  I am obese and so the doctor put me on arimidex for the remaining 3 years.  I went off arimidex in January of 06 and my oncologist said it looked like I was in remission.  In Sept of 06 I was having a lot of pain in my left arm.  I fell shortly after that and broke my humorous bone in my left arm.  They found a cyst at the point of the break and determined it was from the breast cancer.  I had a spot on my arm, hip, and pelvis.  I have had radiation to those areas and have been taking faslodex since October(@$2400 a shot).  My oncologist has set me up for a pet scan next month before I would take the shot.  They want to see how I am doing because he says we have no change in my blood tests and they want to make sure the faslodex is helping or see if I need another type of treatment.While all this has been going on my 58 year old husband of 34 years has been diagnosed with cancer to the small intestine.  He has had surgery and will be getting chemo treatments every 2 wks for the next six months.With this affecting us both now we are really holding onto the Lord. We know he is the Great Physican and that he must have something for us both to do because he has kept us around this long.  I will pray for you, and Marsha.  God Bless, Nancy S  Nlsviolet Tue, 30 Jan 2007 00:00:00 GMT My best friends' son recently recovered and avoided amputation from bone cancer at 6 years of age through two regimens, both of which are recommended and beneficial for all of us, cancer or not.  Both activities were done together, one helping the other.The first was detoxification of heavy metals and toxins from the body through zeolite therapy.  While there are a number of zeolite products, the liquid-suspended variety yields the best results because it is not invasive to the bodies' digestive and vascular systems.  Zeolites do wonders for cancer because they remove the harmful cells that create the cancers (they carry a net negative charge and are caged-like in structure, so they actually contain the toxic cells long enough to be eliminated from the body).  In addition, the product I'm familiar with (Waiora's Natural Cellular Defense) picks up the body's PH levels, literally starving the cancer cells of the acidic environment it needs to grow and thrive.The second is supplementation.  cancer patients need help... it's hard enough to eat, much less eat for optimal health.  This same company has a product that holds an entire day's supply of vitamins and minerals (food and fruit-based, no sugars or preservatives... all flash-pasteurized to maitain potency), giving the patient enough nutritional resources to help them reset for the fight for control of their bodies again.  The regimen costs less than $100 per month, and is the least invasive, most successful regimen I've ever seen.Our prayers are with you... that you will seek the best route and allow God to do His work through it all.  I pray for good news for you!  Let me know if I can help --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Cancerfreetennessee Wed, 11 Apr 2007 00:00:00 GMT