CancerCompass message board discussion started by Loveablerobert on 1/3/2005 http://www.cancercompass.com/message-board/message/all,1456,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I went from age 19 to age 41 to be cancer free from Lymphoma, it can be beat through food, rest and low stress. Loveablerobert Mon, 03 Jan 2005 00:00:00 GMT I have recently been diagnosed with gastric non-hodgkins lymphoma. It is stage 1. Can anyone share experiences with me? I am told that radiation is probably the best treatment. Thanks, Melody Melodyd Tue, 04 Jan 2005 00:00:00 GMT Hi, I had the Large Cell stage 2 Lymphoma, Non-Hodgkin's. I was given 4 courses of chemo, radiation therapy. Sorry about my spelling...I was treated in Houston, an been Remmision free since 1983. I wish you the best of luck. Robert Loveablerobert Tue, 04 Jan 2005 00:00:00 GMT Thanks so much for your post. I am just starting out on this "scary journey" and can hardly think straight. I am a Christian and not afraid of death, but I have a 14 year old son I pray that I can live to see grown. I am Stage 1, and have been referred to an oncologist surgeon and oncologist radiaologist. I will weigh the options and decide. This very minute all I can think of is "I WANT THIS OUT OF ME NOW"! My regular oncologist recommended the radiation but I am fearful of it spreading if not removed. Thanks so much for your positive input! Melody Melodyd Thu, 06 Jan 2005 00:00:00 GMT Hi Meloney, There is a very high cure rate for your kind of cancer, take yourself to one of the very well knowen cancer centers in this country an there are many do not mess with the small ones just because you do not want to drive to the better one there is a big differnce very big, I went to MD Anderson in Houston an I know of a couple of the Doc that worked there for 20 plus years are now on their own. I would be more then happy to send their pnone no. to you if you need. I would also help you with any questions you may have with this. I did it on my own 22 years ago and had no support groups at that time...I wish you the best. Just do me this favor and yourself - go to one of the big cancer centers in this country. There is a big difference. Doctors who see this 20 plus times each day and you have a team of doctors not just one. The cost is no more to have the best. God Bless you...Hugs, Robert Loveablerobert Thu, 06 Jan 2005 00:00:00 GMT Thanks so much for your replies! I am trying to be very proactive! Please do send me the names and phone numbers of any doctors you would recommend, or any hospitals/clinics, etc. All help is appreciated! God Bless you! Melody Melodyd Mon, 10 Jan 2005 00:00:00 GMT Dear Melody, I live in Canada and my daughter was diagnosed a few weeks ago with stage IIA Hodgkin's disease. I was told by the oncologist that this type of cancer is the ''best cancer'' anyone can have, if you can say cancer is something good, but the meaning is that it is easily treated and the survival rate is 95% - a very very high percentage and once treatments complete and the lymph nodes that were affected have been reduced and the cancer is no longer in the nodes then you can consider yourself completely cancer free - not in remission - cancer free. This is the only type of cancer that does not go into remission, it is completely gone. You may have a new cancer appear but it is not caused from your 1st cancer. That is why you see most of the over people who have answered you saying they have been cancer free for 18 - 22 yrs...so hang in there and I am sure all will go well and in 4 - 6 months I will be waiting to see you reappear online and tell us you are cancer free...along with myself telling you my daughter is also cancer free. God bless, be optimistic that is one of the greatest remedies... Mally Mally0404 Tue, 11 Jan 2005 00:00:00 GMT Thanks so much for your reply all the way from Canada! I will remember your daughter in my prayers! I visited a cancer surgeon and a cancer radiologist specialist yesterday. I am planning on having surgery on Monday, January 17th to have my lymphoma removed from my stomach. The doctor said 100% cure! I am so excited to have this done and so quickly too! I appreciate all the encouragement you have given me! Hugs and prayers! Melody Melodyd Tue, 11 Jan 2005 00:00:00 GMT Dear Melody: So happy to hear your good news. God works in misterious ways and I wish you only the best on the 17th and as I mentioned in my previous e-mail you will be 100% cured... Take care and God Bless... Mally Mally0404 Wed, 12 Jan 2005 00:00:00 GMT Thanks again for your positive thoughts and well-wishes. I would love to add your daughter to my prayer list if you would like me to. If so, I will need just her first name! I believe strongly in the power of prayer! Hugs, Melody Melodyd Thu, 13 Jan 2005 00:00:00 GMT I would love you to add my daughter, Vanessa, to your prayer list. As I said previously, God works in mysterious ways, therefore, all the help we can get. I will add you also Melody to my prayer list. God Bless. Good luck on the 17th and let us know how everything went. Best wishes Mary Mally0404 Fri, 14 Jan 2005 00:00:00 GMT I have added her to my list and my son's list for prayer, as well as the church list. I appreciate your prayers too! I will let you know when I am home from the hospital how it went and what the doc had to say! Hugs, Melody Melodyd Fri, 14 Jan 2005 00:00:00 GMT Dear Melody: The next few months or more are going to be very trying on you and your family and friends. The best thing you can do for yourself and them is to let them be a big help to you in your struggle in overcoming this illness. And you will overcome it by God's grace and your willingness to fight. As everyone on here has told you, you got lucky in having the type that we have. It is one of the treatable forms with great success. Please let those around you who want to help you, do so. It is great medicine for them and it will alleviate some of the stress from everyday activity you will encounter. A lot of people call us survivors, but I tend to think of us as veterans of a very real war. I personally had a softball size mass in my lower chest area at diagnosis, and am now cancer free for a little over 1 year after 8 months of chemo and 5 weeks of radiation. I cannot stress enough on the power of letting those who want to help you, do so. Everyone wins. In a short time you will be called upon to be the example for others who you will encounter in life, for this illness effects every family in one way or another. God has called on us to be his warriors against this puny little disease and we shall all conquer it someday. Welcome to the ranks!! Your major weapon is your sense of humor. Now go kick some cancer butt and keep us all posted. In God's grace we go, Robbie R. Robbie R. Tue, 25 Jan 2005 00:00:00 GMT How nice to come into this information center and see such a great sense of humor. I agree with you Robbie, a good sense of humour, will power and family is the best remedy. I enjoyed reading what you had to say and it is nice to have a smile appear instantly. Thanks for the boost and hope all continues well for you also. God bless and take care and keep smiling. Mary Mally0404 Thu, 10 Feb 2005 00:00:00 GMT I wanted to tell you that I am a cancer survivor and I had two boughts with Hodgkin's Disease. You are correct in stating that it is the cancer to have if you have to have one. The cure rate is high and it is true that most Hodgkin's patients do not pass on because of the Hodgkin's Disease. However it is not true that the when your cancer has seemed to disappeared that you are cancer free and cured. With Hodgkin's Disease it can be a cancer to be called cured only if you go 10 years without a relapse, or ten years since your last relapse. In that timeframe you are considered to be in remission. I had treatment and my cancer was gone. Exactly one year later it had come back, I was treated again and it has stayed gone. That was 6 years ago. I am all for positiveness with the outlook of cancer. It truely is a lifesaver. But people have to be totally informed as well. In concern that there may be some misunderstandings and I have known some people who felt the cancer was gone so everything is ok and I don't need to see the doctor anymore. That is wrong. You will remain to see a doctor for follow ups for the rest of youre life and you need to ALWAYS disclose the information that you have a history of Hodgkins Disease. I have heard many doctors getting upset with patients who do not disclose that information and it does make a difference in the treatment you receive in many circumstances. It is wonderful to be able to beat a cancer, but after it is gone, it cannot be forgotten. It is an attack on your immune system and is extremely important for medical treatment in the future as well. Good Luck to all. I also recommend contacting the american cancer society, the leukemia and lymphoma society and reading as much as you can about your illness so you may know what to expect. When it comes to fighting cancer.....knowledge is power. It also makes the fight easier when you know what to expect and are able to prepare yourself for it. E Elizabeth y Sun, 03 Apr 2005 00:00:00 GMT Hi Elizabeth Thanks so much for your information but I must say I dissagree with your prognosis on lymphoma. You cannot generalize on the survival rate and the return of the cancer. All depends on what stage the lymphoma was diagoned at. Of course I understand that if it has reached a stage IVB then of course there are other organs that have been affected but if the Lymphoma has been diagnosed in stages I and II I was told by a very well known oncologist that once the treatments have been completed then the cancer can be considered cured. I really don't want to give anyone false hopes but a more realistic diagnosis and what the oncologist has to say is what is important. I know that even though they say you can be cured, it will always reamin the the back of your mind that you have been a cancer survivor and that cancer may reoccur elsewhere and under another form of cancer but optimism and knowing all the facts help in getting past the first few months of tretment. Wish everyone well and God Bless. Mally Mally0404 Mon, 04 Apr 2005 00:00:00 GMT We have apparently had some form of misunderstanding here. My intent is to clarify it. If you would take a moment to look back at what I wrote the first time, I never generalized a survival rate. I did however state that you have to be in remission for ten years to be called cured by medical standards. I in no way, shape, or form intended for anyone to perceive my information as negative or a "prognosis". I even went back to reread my statement to be sure I hadn't miswrote something. The statement of being in remission is not a bad place to be. To be in remission means you beat cancer. To be cured in cancer terms, is rare. And fortunately, patients with Hodgkin's can receive that title after the 10 year period after treatment. You are correct in the statement that you CAN be cured after the treatment. By all means yes. But your are diagnosied as being in remission for the ten years following. I was going to paste information from medical websites regarding this information, but instead, please go to the Mayo-clinic site and read about Hodgkin's. There is excellent information inthe Physician's Desk Manual. It gives very explicit information as to what tests to perform, the exact treatment protocol and everything afterward too. As someone who has battled this disease, I would NEVER want to bring down anyone's hopes. Having been shocked myself when being diagnosed, I advised taking care of yourself and knowing all you can about the cancer you are fighting so you can fight the battle well. It would be like saying the stove is on fire. throw water on it. It spreads. Well if you don't know what kind of fire you have, you can't fight it effectively and efficiently. My intentions are only good here and I am sorry you took such negativity from it. Good Luck Elizabeth y Mon, 04 Apr 2005 00:00:00 GMT Dear Elizabeth: I am very sorry you misunderstood my response to your cancer comment. I am not here to critisize, on the contrary I am here to to give as much information and pass on all information I have received. I am not a professional, therefore, I am not qualified to give any information regarding lymphoma, I am just passing on information I have received from the oncologist and the oncology nursing team. I am sorry if I upset you but that was not my intention at all and I am sorry if I did so. I think we are very vulnerable at this time and when discussing cancer, of any type, especially by writting, sometimes the meaning of what we would like to say is not understood quite as we would like it to be. Once again I am very sorry and please accept my apology. I am here to learn and exchange and as we all well know their are so many different kinds of lymphomas that no two people react or live through this terrible crisis in the same way. Sincerely, Mally Mally0404 Wed, 06 Apr 2005 00:00:00 GMT Mally, I guess we both misunderstood eachother greatly. And I agree, no two people share the same expierence with their cancers or treatments. I too want to share information and such. I did not mean to appear upset about the situation. I hope that you can also accept my apology for this mixup in understandings and that we can get past this to continue on with productive information sharing and support for others as well that are enduring similar expierences. Thanks Elizabeth Elizabeth y Wed, 06 Apr 2005 00:00:00 GMT Dear Elizabeth: Thanks so much for your prompt reply and no apology necessary, just a misunderstanding and we will all continue on with the knowledged that we have knowing we have friends we can count on on this site and be able to help and listen to others living the same situation. Wishing you all the best Regards, Mally Mally0404 Fri, 08 Apr 2005 00:00:00 GMT Dear Melody, I wish you all the very best for your operation my son has just been diagnosed with stage 2A HD and has had his first dose of Chemo like you we are so scared but we must stay positive my prayers and thoughts are with you... Margaret Mary Thu, 21 Apr 2005 00:00:00 GMT I will say a special prayer for your son. I seem to be doing very well other than fatigue while recuperating from my partial gastrectemy. I go back for my follow up P.E.T. scan and EGD in May. Good luck and keep me posted please! I care! Melodyd Fri, 22 Apr 2005 00:00:00 GMT Like yourself Mally my son has just been diagnosed with stage 2 Hodgkin's Disease he gets his second dose of Chemo this Tuesday it really helped me to read your letter as I have never been so scared in all my life...please keep me posted on your daughter's progress...I wish you all well.....Margaret Margaret Mary Sat, 23 Apr 2005 00:00:00 GMT Nice to receive your message Margaret Mary. Sorry to hear about your son but unfortunately we have not say in these matters and I am glad that my message was able to give you a little respite. But I must say that it is a long battle, with very good days and not so good ones, and it is hard for other to understand unless you are a parent with a child suffering from this desease. I am sure you think as I do that if we could we would change places with them in a second, but again life does not work that way. My daughter just completed her 6th chemo treatment and still no side effects except the hair loss. Her lump has completely dessapeared on her neck and this after the 1st treatment and after the 8th chemo she will have a complete check up - scans etc... to see where we are at and if we will be able to complete the chemo after the 12 recommended treatments. It's a hard battle as a mother and it is not something we accept, but we must learn to live with the situation and not forget that laughter is the best medicine. Love and laughter is what helps my daughter get through the trying days. Must keep your chin up at all times and think positive. Wish you well on your journey and will keep your son in my prayers. Wishing you all the best. Mally Mally0404 Sat, 23 Apr 2005 00:00:00 GMT Hi Robert, It has been a great inspiration to me reading your letter's my son has just been diagnosed with stage 2A Hodgkins and I have never been so scared in all my life what makes it harder is he lives in Australia and we are in Scotland we have been over to see him and will be going back in June but it so hard having this distance between us, he has had 2 out of 6 doses of Chemo and has 1month of raduim to get it was so good to hear your story knowing that you have come through it...I wish you continual good health...Margaret Margaret Mary Tue, 26 Apr 2005 00:00:00 GMT I couldn't agree with you more Robbie. I had a cantalope sized mass in my upper left chest and I have just recently gone into remission. Support and faith in God and a fighting spirit definatly worked for me!!! Septmbrzbrz Wed, 25 May 2005 00:00:00 GMT