CancerCompass message board discussion started by Bacchus on 5/25/2005 http://www.cancercompass.com/message-board/message/all,2140,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am a 40 year old male who has been in great health all of my life. Recently, I went to see my doctor because of a slight dry cough that would not go away. A chest X-Ray was done an a large mass was found in my right chest. They immediately ordered a CT scan which showed a large anterior mediastinal mass in my chest. The CT report states that the mass is not invasive to the lung, chest wall, rib, and has no pleural effusion. The report also stated the the lymph nodes appeared to be normal size as well as the adrenal glands. By bloodwork was normal. After making an appointment with a recommended surgeon, I began reading. The possibilities of the mass were thymoma, lymphoma, thyroid tumer, or Teratoma. I went to one surgeon who said that he expected to find Hodgkin's Lymphoma and wanted to surgically biopsy the mass. There were a few things that I was not confortable with regarding that surgeon so I made an appointment with another who I liked much better. He stated that he also expected to find Hodgkin's Lymphoma and sent me for a CT assisted needle biopsy instead of the surgical option. The waiting for the results was driving me crazy. Knowing that the hospital was going to fax the pathology results to my surgeon and that it may sit on the fax machine for a while, I decided to go straight to the hospital to get the pathology. The initial report was complete but the final report is still pending. I already have an appointment tomorrow with an oncologist in the area. I'm sure she will help decipher the preliminary report and, hopefully, the final report will be complete by the appointment time. I have no idea what type of lymphma I have except the report states "atypical lymphoid infiltrate consistant with lymphoma". It also states that the stains were strongly positive for CD45 and CD20 and CD3 shows scattered positivity. It says the features of the sample are "most consistant with a B-cell lymphoproliferative process". I know we are not doctors here but did not know if these preliminary results sound familiar to anyone. Also, when the final report does come in and the cancer is staged, what is the best way to decide who treats you? I have heard talk about surgical oncologists in this forum but I do not believe my oncologist is one. I was also told that these masses are rarely removed and are treated with radiation and chemo. Is that true? Sorry for the long post but I needed to get it off of my chest. Bacchus Wed, 25 May 2005 00:00:00 GMT I am sorry to hear about the situation that you are facing at this time. But I can tell you of two stories of people I know, the first one is Robert he had stage four cancer thru-out his body and only weeks to live, another gentleman had unitary tract cancer. What is interesting is that both were helped to become cancer free thru a science called gylcobiology which deals with nutrition, that helps the body's immune system to destroy the cancer itself. I work with a woman named Angela who has worked with 3000 people and doctors in this field. Freedom Wed, 01 Jun 2005 00:00:00 GMT Hello Bacchus, I saw your post and it touched me -- knowing how I felt right after diagnosis and what Hell the tests and waiting for results were. I was diagnosed early this year with Lymphoma after having every test known to man. I was given a seies of Rituxin chemo treatments (4 -- once a week) and am now in the resting phase. It was not as bad as I expected -- no hair loss or vomiting -- but I was not prepared for the unrelenting exhastion that has accompanied it. I can barely do anything without paying for it. I went to a play last Saturday and have spent most of my time in bed since. Very frustrating. I have tried alternative treatments and really don't know if they are worth the effort, but, as you probably have found out, sometimes NOTHING seems worth the effort! I am 58 and normally a very upbeat person -- known for my laughter -- but have not felt much like laughing lately. If you would like, I would love to keep in touch with you throughout your treatment. I am a sculptor and freelance writer living in rural Northern California. I was a shelter counselor at a battered women's center and a crisis line counselor twice in my life, so have a LOT of counseling skills, broad shoulders and ears that welcome the discussion of fears and problems. It helps keep my own fears at bay to feel that I am helping someone else. Anyway, if you would like a "penpal" and perhaps later, if we decide that we want to take it further, a telephone chat friend, I am here. I have a cell phone and can talk anywhere in the states. Contact me and tell me what you have found out since your post -- and tell me a little about yourself as well. A fellow traveler on the (hopefully) road to a cure, Leona Bast Priestess Tue, 19 Jul 2005 00:00:00 GMT Hello Odis M! I was diagnosed with Lymphoma earlier this year and have gone through a seies of chemo treatments. I am interested in the Glycobiology that you mentioned to Bacchus. Is there something online that I can look at about it? I have tried a few other alternative treatments and am open to most if they are not too expensive or painful. Thanks for your comments! Leona Bast Priestess Tue, 19 Jul 2005 00:00:00 GMT Hello all! Thank you for your kind words of support and information. I am also interested in Glycobiology or any other methods of boosting my immune system as long as it does not interfere with my current treatment. Leona, I would love to have a pen pal. I'll see if I can get your email address of off this site. I have been doing well since the time I wrote the post at the beginning of this message. I am going for my third CHOP with Rituxen treatment tomorrow. Ihave been handling them well with no major problems. I am a little tired for the first week after and have some bone pain from the Nulasta shot (white blood cell booster). My appetite is great and I just had my first CT scan since the beginning of treatment. It showed a 35-40% reduction in overall tumor size and the portion of the tumor that was around my lymph nodes behind my sternum has melted away. So, I guess we are doing something right! I belong to other support websites as well and will list them here since someone else might find them helpful: http://www.leukemia-lymphoma.org/ubb.adp?frame_url=http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&item_id=9388 for all types of lymphoma discussions and http://health.groups.yahoo.com/group/MediastinalB-CellNon-HodgkinsLymphoma/ for Mediastinal B-Cell Lymphomas. Take care all and God bless! Bacchus Tue, 19 Jul 2005 00:00:00 GMT Leona, I am unable to get your email address from the board. As I mentioned in my previous posting, I am doing very well and am lucky to have a great support system in place with family and friends. I have come a long way since writing that post pleading for information and support. It seems like so long ago! But, I am always looking for new freinds and would like to stay in touch and swap stories, if you like. Take care. Bacchus Tue, 19 Jul 2005 00:00:00 GMT Hello again Bacchus, What a nice surprise to find a response so quickly this morning -- and to hear good news too. It seems that they are being a litle more aggressive with your treatment than mine as I have had the 4 week Rituxin series and now am in a waiting stage of at least three months. I have been experiencing the bone pain too -- really bad the past few days -- so it is good to know that it is a normal thing -- Who knew that I would be normal at ANYTHING? When one is an artist, one is seldom "normal" at much of anything...or that is what I've been told anyway. I sculpted a little bit yesterday and ended up having to come in because of the pain -- even through the pain meds. Am considering asking for stronger ones, but really don't want to become a zombie -- unable to function. Why live at all if you are going to feel like that? Perhaps the reason I haven't had the aggresive treatments is I have been having blood tests every two weeks and the results, except for my blood sugar (I am diabetic), have been normal. I had been pretty depressed, but, as the day dawned this morning,thankfully a little cooler (we have been experiencing a heatwave here in California), I find myself crawling out of the hole and peeking out....just a little. I really don't enjoy "pity parties," but have been privately throwing them for myself a few times since the diagnosis. I am disabled from an auto accident more than 20 years ago which left me with a leg that is there and functions, but is badly scarred and painful. I am lucky to have legs at all, since one was filleted to the bone from the hip to knee, and the other was nearly cut off. After nine surgeries, 9 months in a hospital bed, and a lot of physical therapy, I could again walk. It was difficult, but I went back to college and found clay sculpture and journalism -- a whole new life! Living with the daily pain was difficult, but I managed to ignore it most of the time, then when the cancer struck -- well, it was almost more than I could bear. I have played the "Why me?" tape more than a few times lately -- which I'm sure you are familiar with. I guess the reason I have been so down is, because of my lack of energy, I have about decided that I can't attend the women's festival in Mendocino that I haven't missed for more than 10 years. It is coming up in mid-August, and I just don't feel able to drive that far. That realization put me into a tailspin. How have your friends and family reacted to your illness? A few friends have fallen away from me -- those I expected to be there as support just aren't. I guess they just can't deal with the emotions. Others have been wonderful. My family...well, my husband has a hard time expressing how he feels, and I know he is scared. Sometimes it comes out as anger --not real productive for either of us. We have known each other since I was 8 years old -- 50 YEARS! Hard to believe sometimes...We have been married 35 of those years. Well, I guess that is enough for now. I am hoping that the moderator will allow this through -- my E-mail is paganart@jps.net (anyone else interested in contacting me there is welcome also). If we chat on there I can show you some of my art if you are interested. Most of it is humorous -- reflecting my usual strange and quirky personality. I am usually a cutup and love to laugh and make others laugh. One of my silly, belly-up dragons went to Washington DC shortly after 9/11 to a woman who worked at the Pentagon and had lost friends that day. She attended the opening reception of a show I was in and, after a bit of negotiation with the gallery owner (art usually stays until the show closes), took my dragon on her lap all the way to Washington 3 days later. She said when she saw it it was the first time she had smiled since 9/11. It felt really good to be able to do that for someone. Hoping to hear from you soon and hope you continue to improve. Hugs, Leona Bast Priestess Tue, 19 Jul 2005 00:00:00 GMT