shirleyb

What a beautiful story. It gives me hope to know that no matter what I have done, or how awful I look, God sees me as a precious child of His. Thank you for sharing this wonderful story.

Lynne, I am so sorry that your family is in this situation. I am glad though, that it gave you and Dean an opportunity to talk about life. So many do not get that far with this horrible illness. My prayers and thoughts are with you. May God give Joanne the strength she will need in the days to come. Much love, Shirley

Welcome to the best place to find support and encouragment. I am so sorry you have this awful illness. Take it one day at a time and make the most of it. Ask questions here that you fear you can not ask anywhere else. Someone will answer. Much love, Shirley

There was alot more information from other posts under the cumidin posting in the general section. That is where I found this one from John. I wish you the best. Shirley

Vadis, I have to agree with what everyone else has said. I would suggest that you get a notebook and write down all your concerns and questions. This is such a hard time for you. Write all your questions down. It is easier for you to have it on paper, that way you don't forget to ask what you want to know. Write down what they give you for answers and get copies of all your tests and reports. Demand they give you answers you can understand. If they beat around the bush....get a new doctor that will give you hope. Miracles happen everyday. I will keep you in my prayers. Much love and warm hugs, Shirley

Don and Lucie, So far so good...I will keep you in my thoughts and prayers. Best of luck, Shirley

I copied this from a posting John had put in the general section. John, first, thank you for your reseach. I think for those who are thinking there is no hope, you might want to check this out with your doctors. At this point in the game, it can not hurt to ask the question and see what they say. Print this out so they have the same data that John has found. What do you have to lose? Ask the question. Just a thought. I can only pray and hope that maybe this will help. Good luck, Shirley The following is what John had posted. The Anticoagulant Heparin: A Possible New Cancer Treatment? Leo Zacharski, M.D., and Robert G. Lerner, M.D. Dr. Zacharski is Professor of Medicine, Dartmouth Medical School, Hanover, New Hampshire, and Associate Chief of Staff, VA Medical Center, White River Junction, Vermont. The Case of Mrs. B. A 79-year-old woman -- we will call her Mrs. Benchley -- came to her local hospital with pain and swelling in her right leg. She also complained of shortness of breath and pain on the left side of her chest when she did breathe. Over the previous two months, she had felt increasingly tired and had developed a dry cough. Mrs. Benchley had always been healthy, suffered from no serious illnesses, never smoked and was physically active. After running a few tests, doctors found a small cancerous tumor in her lung. They also found enlargement of the lymph nodes, which indicated that the cancer had probably spread to other parts of the body. A biopsy, or examination of a sample of tissue removed from the lung tumor, confirmed that Mrs. Benchley had metastatic adenocarcinoma of the lung. Adenocarcinoma is one of the many types of cancer. As for the pain and swelling in Mrs. Benchley's leg, tests revealed that she had deep vein thrombosis of a vein in her right leg. Also called DVT, deep vein thrombosis is a condition in which a blood clot blocks or reduces the flow of blood through one of the body's main veins. It can cause pain and swelling and can sometimes be life-threatening. For reasons that are not completely understood, it often occurs together with cancer. For her DVT, Mrs. Benchley was given the usual treatment, which is IV heparin in the hospital, followed by warfarin, an oral anticoagulant (blood thinner) at home. Sold under a variety of brand names, heparin is a prescription anticoagulant that slows the rate of blood clot formation. It can both prevent formation of blood clots after surgery and, as in the case of Mrs. Benchley, help dissolve blood clots that have already formed. Warfarin, (usually sold under the brand name Coumadin®), is an oral anticoagulant. As for the lung cancer, Mrs. Benchley's doctors did not recommend radiation or surgery and she decided against chemotherapy. Soon her DVT symptoms improved and she was sent home with a prescription for warfarin. Unfortunately, however, the warfarin did not prevent another blood clot problem. Mrs. Benchley was readmitted to the hospital a month later with DVT, now in her left leg. She was again treated with IV heparin, did well and returned home. This time, instead of warfarin, she was prescribed a form of heparin called enoxaparin, which she could inject herself. One year later, Mrs. Benchley returned to the hospital for a checkup. She had continued to lead an active life and had been surprisingly well, except for some shortness of breath with exertion. She had had no further problems with DVT. A chest X-ray showed that the spread of her lung cancer had slowed considerably. She was told to continue on a low dose of a form of heparin called low molecular weight heparin (sometimes abbreviated as LMWH). Two Interesting Points Mrs. Benchley is not unique, and her story illustrates two points. One is that the anticoagulant warfarin sometimes seems to lose its normal effectiveness against DVT in cases where the DVT occurs along with cancer. For some reason, heparin, a different kind of anticoagulant, seems to remain effective against DVT even with the presence of cancer. A potentially more significant issue, however, is whether taking heparin to treat blood clotting problems may have somehow slowed down the growth of Mrs. Benchley's lung cancer. Based on cases like hers, doctors have begun to wonder if the human body's blood clotting mechanism may somehow play a role in the growth of cancerous tumors. If that is so, then it would explain why a drug like heparin that fights blood clotting might actually stop or slow down tumor growth. Can Heparin Fight Cancer? Recent research results have backed up the theory that the body's coagulation mechanism may play a part in the development of some cancers, as well as offering some explanation of why heparin might interfere with cancer.1,2,3,4,5,6 Heparin has been shown to fight the growth of tumors in animals in various ways.7,8,9,10,11 Some of these studies have also shed light on why heparin, and not warfarin, might have this effect.12 There is also preliminary evidence that LMWH treatment prolongs survival in patients with both DVT and cancer.13 The possible reasons for this are not completely understood. To put them as simply as possible, cancerous tumors are usually surrounded by a substance called fibrin. Fibrin promotes the growth of the tumor and the growth of new blood vessels that supply the tumor with necessary nutrients. Heparin interferes with fibrin formation and perhaps directly inhibits the formation of new blood vessels. Both heparin and LMWH may also inhibit tumor growth in other ways.14,15,16 Summary Whatever the exact mechanisms involved, there is mounting evidence that the anticoagulant drug heparin may fight the growth of at least some kinds of cancerous tumors.17 In experiments using rats, treatment with heparin has decreased the likelihood that cancer will metastasize, or spread throughout the body. Similar studies on humans have been promising, though not conclusive.18 The interaction of the body's coagulation mechanisms, heparin and cancer is an extremely complex issue. Cancer, itself, comes in many forms and acts in many different ways. While we await the results of further research, a person facing a decision about cancer treatment -- especially someone with lung cancer or DVT -- may wish to discuss heparin treatment with their doctor. March 2001 Email this article to a friend References 1. Norrby K: 2.5 kDa and 5.0 kDa heparin fragments specifically inhibit microvessel sprouting and network formation in VEGF165-mediated mammalian angiogenesis. Int J Exp Pathol 2000 Jun;81(3):191-8. return 2. Kato M, Maeta H, Kato S, Shinozawa T, Terada T: Immunohistochemical and in situ hybridization analyses of midkine expression in thyroid papillary carcinoma. Mod Pathol. 2000 Oct;13(10):1060-5. return 3. Arkel YS: Thrombosis and cancer. Semin Oncol 2000 Jun;27(3):362-74 return 4. Tyan ML: Effects of inositol, LiCl, and heparin on the antibody responses to SRBC by normal and immunodeficient XID mice. Proc Soc Exp Biol Med. 2000 Jul;224(3):187-90. return 5. Collen A, Smorenburg SM, Peters E, Lupu F, Koolwijk P, Van Noorden C, van Hinsbergh VW: Unfractionated and low molecular weight heparin affect fibrin structure and angiogenesis in vitro. Cancer Res. 2000 Nov 1;60(21):6196-200. return 6. Pascall JC, Ellis PD, Brown KD: Characterisation of the rat heparin-binding epidermal growth factor-like growth factor gene promoter. Biochim Biophys Acta 2000 Jul 24;1492(2-3):434-40. return 7. Lapierre F, Holme K, Lam L, Tressler RJ, Storm N, Wee J, Stack RJ, Castellot J, Tyrrell DJ: Chemical modifications of heparin that diminish its anticoagulant but preserve its heparanase-inhibitory, angiostatic, anti-tumor and anti-metastatic properties. Glycobiology 1996 Apr;6(3):355-66. return 8. Hejna M, Raderer M, Zielinski CC: Inhibition of metastases by anticoagulants. J Natl Cancer Inst 1999 Jan 6;91(1):22-36. return 9. Prandoni P, Piccioli A, Girolami A: Cancer and venous thromboembolism: an overview. Haematologica 1999 May;84(5):437-45. return 10. Zacharski LR, Wojtukiewicz MZ, Costantini V, Ornstein DL, Memoli VA: Pathways of coagulation/fibrinolysis activation in malignancy. Sem. Thrombos. Hemostas.18:104-116, 1992. return 11. Callander N, Rapaport SI: Trousseau's syndrome West J Med 1993 Apr;158(4):364-71. return 12. Hull RD, Raskob GE, Pineo GF, Green D, Trowbridge AA, Elliott CG, Lerner RG, Hall J, Sparling T, Brettell HR, et al.: Subcutaneous low-molecular-weight heparin compared with continuous intravenous heparin in the treatment of proximal-vein thrombosis. N Engl J Med. 1992 Apr 9;326(15):975-82. return 13. Smorenburg SM, Hutten BA, Prins MH: Should patients with venous thromboembolism and cancer be treated differently? Haemostasis 1999 Dec;29 Suppl S1:91-7. return 14. Zacharski LR, Ornstein DL, Mamourian AC: Low-molecular-weight heparin and cancer. Semin Thromb Hemost. 2000;26 Suppl 1:69-77. return 15. Sylvester DM, Liu SY, Meadows GG: Augmentation of antimetastatic activity of interferon and tumor necrosis factor by heparin. Immunopharmacol Immunotoxicol. 1990;12(2):161-80. return 16. Syrokou A, Tzanakakis G, Tsegenidis T, Hjerpe A, Karamanos NK: Effects of glycosaminoglycans on proliferation of epithelial and fibroblast human malignant mesothelioma cells: a structure-function relationship. Cell Prolif. 1999 Apr-Jun;32(2-3):85-99. return 17. Ornstein DL, Zacharski LR: The use of heparin for treating human malignancies. Haemostasis. 1999 Dec;29 Suppl S1:48-60. return 18. Smorenburg SM, Hettiarachchi RJ, Vink R, Buller HR: The effects of unfractionated heparin on survival in patients with malignancy--a systematic review. Thromb Haemost. 1999 Dec;82(6):1600-4. return

I know this is too late to be a benefit for Randy, but I wonder if anyone has brought John's response to this issue to their doctor. Somehow in my soul, I think that as group we are hitting on something here. Could it be as Oprah says, listen to what God is telling you in your heart and follow it. I feel like God is screaming at me to ask you to please follow up on this interesting tidbit of information with your doctors. If it would benefit just one of you, then I would say, maybe there is a better chance out there for those who have been told there is nothing left to try. If there is nothing else to try according to the doctors, then what can this hurt if it is given properly? I just feel like God is screaming at me .....give it a chance. Maybe this is the miracle we are all looking to give us more time. I can't answer that but man, I have this screaming voice in my soul that says it is worth a shot. Best of luck to all. You are all in my prayers. Shirley

Sam, I am glad to see you are back to posting. I wish you only the best. Keep up the good news. Shirley

First of all, thank you all for your prayers. This is one of the only places I know where I can let all my fears out and know that no one is going to say I am just over reacting. Thank you for your support. I was able to bring Priscilla home this afternoon. She had appendicitis. (Keep in mind I can't spell worth a darn at times.) It had not burst by the time the surgeon got in there and that, in and of it self is a blessing. Otherwise we would be looking at about a 2 week stay. So thank you God for looking out for her and those that were in charge of her care. Now she is home and resting very well. She is going to be fine. The one really good thing that has come out of this, is the kids are all starting to understand why you have to have someone with you who can advocate for you for the best possible care. When I got back to the hospital, I really grilled the ER doctor as to what he was doing to help her. I have a feeling he remembered who I was when I started asking the techincal questions, like what tests have you done, what tests are you going to do, what were the results of the tests, what was her blood count, who was he calling to get opinions and help from. I would not let him leave until he answered all of these in terms she could understand. I got the feeling he knew I did not trust him to do his job. Keep fighting for the best care you can get. Don't let anyone blow you off like you don't know what you are talking about. Be prepared to ask the tough questions and be prepared to make them accountable for what they say. Much love to all. Keep your eyes open, miracles happen every day. Shirley

Don, Thank you for your prayers. She ended up having emergency surgery this afternoon and is her room now and resting. My son is staying with her until I can get back over there to spend the night with her as I will not leave another family member alone to spend the night in a hospital. Myself, her sisters and my kids have all made the promise to each other that we would never leave one of us alone to face a hospital stay by ourselves. We found out the hard way that things happen and you are not made aware of them until long after the fact. No one should have to go through this alone. Especially in the middle of the night if something comes up. I came home, called a few of my good friends to talk to and cry with and get my act together. Without them I would lose my mind. They gave me the strength to get it back together. Thanks for listening and thanks for the prayers. Shirley

I had to take my foster daughter into emergancy this morning. She was having abdominal pain that and we could not figure out why. She has medical issues that can be quiet unnerving to say the least. She has Marfan's, and that can cause life threatening things to happen for no reason other than the Marfans. I thought I would be strong enough to be there for her and I found out I am not. I was fine until the doctor came in. I was ready to KILL him on site. I did not know I could be so angry with someone. He was the doctor who attended to Randy the night he died and told me that Randy was having an anexity attack when in reality, Randy was having a massive heart attack. When I saw him come into the room for my daughter I just about lost it on site. I kept it together long enough for him to check her out and get tests going to find out what is wrong with her but then I had to leave. I ended up calling her older sister to come and be with her because I could not deal with the pain it caused me to see this man. Now I am feeling very guilty because I had to leave her there and come home. Right now I feel like I did the night Randy died and I hate this pain I am in. I am so scared that the doctor is going to blow her off just like he did to Randy. My head is telling me this is an unreal attitude to have. He probably is a good ER doctor but to me, he will always be the one who let my husband die before my eyes. I know it will take time to learn to trust doctors again, but right now I am so scared and hurting I can't think straight. Please pray for Priscilla that she is okay and nothing major has happened. Please pray for me that I can find some peace in my heart to forgive. Please pray for this doctor that he doesn't f%*k it up again for my family. I did not think I could hurt this bad. Shirley

It was just a question really. I could not find a way to use them legally and I checked. That is why they went down the toilet.

Connie, It is wonderful to see you back on board. Shirley

go fay

I think this is a wonderful idea. Now I have a question about medications. When Randy died, I was left with about $7000 worth of medication at the house. I was told I could not return it nor could I find any place that I could donate it to for someone else to use. To me it was such a waste. As you can see the medications were expensive. We had to cover the cost on some of it but even so, I know that the Lovenox itself was worth $500.00 a shot and I had 20 doses of it here at the house. Then there was the ms cotin, the cumidin (4 dosage levels), the cough meds, and all the rest. Does anyone know of an organization that could have used this? I did dispose of all the medications I had. But it was a shame to see it go down the toilet. Some I was able to give to my sister in law who happened to need the lovenox after some surgery she had, but the rest went. Does anyone know anything about this. I am sure there are laws that I broke by giving the stuff to my SIL but I felt safe that she would not report me. I think of all the people who don't have the money or the insurance to cover all this stuff who could have a benefit from these items. At the time, I was in no shape to deal with all the government BS. What are your thoughts? Shirley

I just want to take this time to say thank you to each and everyone of you that have joined this board and shared your stories. The last six months have been the worst of my life and I would not wish this on my worst enemy. It has been the people on this board who have been so open and honest about what is going on with them and it has made me realize that we each have so much to offer to one another. The only ones I know who really understand what I have gone through and am still going through is you. You have to have been there to understand the pain and heartache it brings to our families. You have helped me to survive and get back on my feet somewhat. I know I could not do this by myself and I needed others besides my kids to help me and you have. For this I will always be grateful and thankful for. So thank you from the bottom of my soul for being here, being willing to listen and totally understanding me when I say life can suck sometimes. My hope is that I too can offer encouragement to others to help them through these very difficult days. Much love going out your way. Keep your eyes open, miracles happen every day. We just have to be able to see them for what they are. Shirley

My hubby Randy had a stroke. That is how we found out he had the cancer. It was only when he had the stroke that the doctors looked to see what was the problem and why he had been having blood clots developing for over two months. It took a stroke to get us into the emergancy room where someone decided maybe we should see why he is having a stroke. We had been going to the doctors for 5 months before that just because he did not feel good and had pain in his right shoulder. They at first said it was a pulled muscle. I am a massage therapist and could not touch or relieve the pain so I knew something was wrong. But of course the doctors knew it all and never did any tests to disprove what I thought. Even when I asked why he had baseball size swelling under his arms. They looked at me like I was nuts and I was not a doctor so what did I know. Be an advocate and fight for the treatment you sister needs. Take notes, ask questions and if they don't give you answers you understand scream and holler til they do. Make the doctors accountable for the job they do. I will pray for you both to have the strenght to get through this awful time. Keep your eyes open, miralces happen every day. They may be small but nonetheless, they are miracles. Shirley

Norme and Buddy, We are all ENTITLED to have a pity party. I just pray you are able to get back up and roll again. It is hard to get out of the pit sometimes. Just know we are here for you and will always be. Honor your feelings and then put them on the shelf. I will keep you both in my prayers. Take care of yourself and do the best you can. That is all that can be expected of any of us. Keeping my eyes open for miracles because they happen every day. Sometimes we just don't realize it when it happens. Much love, Shirley

Karen, I am not sure about the CD. I will have to check it out. I know music for me is one way to deal with the pain of losing my hubby. The kids thought I was nuts the morning of his funeral because I was singing and dancing and crying with Norman Greenbalm to Spirit In the Sky. It was my release. It was one song Randy and I always loved and understood. That is where we wanted to go. Keep the faith, Shirley

Randy took trazadone every night. It is an antidepressent. But he slept every night and did not have any problems with getting his rest. The only time he really had trouble was when the coughing would not let up. Then the cough syrup helped and he was able to rest. I have taken it a couple of times when I too can not sleep. I wish you the best of luck. Take care, Shirley

Jim, I am so glad you have stayed with the board. Ada would have wanted you to continue to encourage others along the way. You have been there and know what the rest are going through. I too have found a great deal of peace by knowing that everyone here on the board cares so much. If I might be so bold as to offer something to you and to anyone else who wonders if there is a heaven, please read the book by John Edward titled "What if God were the Sun?" As I read it, it reminded me of my father. My dad could have written that book. By reading it, it has given me so much peace in the last few days. I know where Randy and Dad and your Ada are. I too will be there one day. May you too find peace in your life. Keeping the Faith and keeping my eyes open. Love, Shirley

Randy did the lovenox at home for almost 3 months. His cancer was not found when he started throwing the blood clots. The blood clots were our first indication that something was wrong. We had no idea he had cancer and the doctors never pursued why he was having blood clots. It was only after having a stroke did we find out he had cancer. The cost is extreme for the lovenox and that is why they usually switch over to cumidin/warfine. When Randy was first getting the blood clots, we were going to the doctor every 4 days for INR's. You would have thought that the doctors would have done more tests to find out why he was having issues with blood clots (he had 14 major ones before the stroke)but they didn't do a d**n thing. They told him he was having blood clots because he had psoriasis. My only advise is ask questions, push the doctors for answers and if you don't like how they are treating you for asking, find someone who will help you. I pray that no one has to go through what we went through ever!!!

Cheryl, I am so sorry. My heart goes out to you and your family. If I could make the pain go away I would. May God be with you at this time. Hugs, Shirley You are always here with me You’re in my heart and in my mind, You’re in my reverie All my dreams and thoughts are all of you All the memories we made, our whole life through… When we are apart, I’m part of you You’re part of me Always know our love will last right Through eternity, for you will always be a part of me Know that when we have to part Just always keep me in your heart Close your eyes and I’ll be there You wait and see… I’ll be the sun that warms your heart I’ll be the stars that show the way I’ll be a gentle breeze to blow around you every day… I can never go away, The memories made are here to stay And I’ll be here with you forever and a day… Please know that I am always there, And our love is everywhere. Just close your eyes, reach out for me, And I’ll be there when a love is meant to be It goes on past eternity, And so my love for you …will always be. You are always here with me.

I just finished reading a book that John Edward wrote titled "What if God were the Sun?" This is a song that is in the book and I thought I would share it with all of you. Much love, Shirley You are always here with me You’re in my heart and in my mind, You’re in my reverie All my dreams and thoughts are all of you All the memories we made, our whole life through… When we are apart, I’m part of you You’re part of me Always know our love will last right Through eternity, for you will always be a part of me Know that when we have to part Just always keep me in your heart Close your eyes and I’ll be there You wait and see… I’ll be the sun that warms your heart I’ll be the stars that show the way I’ll be a gentle breeze to blow around you every day… I can never go away, The memories made are here to stay And I’ll be here with you forever and a day… Please know that I am always there, And our love is everywhere. Just close your eyes, reach out for me, And I’ll be there when a love is meant to be It goes on past eternity, And so my love for you …will always be. You are always here with me.