newly diagnosed with lymphoma - Lymphomas Message Board

highlandpoppy · 08-30-2008, 12:00 AM

New to the boad and this is my first blog ever. As I said I have been recently diagnosed with lymphoma, but since most of my medical care is through the VA things are moving slow, or mostly likely like a sail boat with no wind. One problem is my pet scan showed I have two large areas on the splenn and every lymph node in my body has it to some degree, the problem is since I am a Kidney patient on dialysis it was found at a very early stage and the surgons who were to do the Biopsey can not feel the nodes with their hands. so they are bewildered about which one or where they want to go to get a sample. To add to the puzzel they have not got a clue as how to do the sample one doc wants a bone marrow sample and a bone sample, another wanted to slit my neck and use a scope to enter my chest and harvest nodes from near the heart. yet another wants to use the CT and do a live surgury using the ct as an real time guide for the needle if that is what they use. Now all of these seem OK until they said we do not want to use anesthetics due to the fact that I have polycyctic kidney disease and only have about 1/2 of a kidney with just 7 to 8% funtion. For me that was a mute point I am already on the machine now it is not like it will cause kidney failure I am already end stage as it is. My wife has seen me live with kidney stones 14 different operations for the kidney disease and now this. She is my rock she never gives up hope and after thirty years of marriage she is still here dealing with never ending problems she has worked nearly every kind of Blue collar job out there. We finaly have her in college at the age of 48 she is starting her third year, she is incrediable to to say the least. Now I have tons of questions and very few people to ask them to. She would find the answers for me but she has enough on her mind because of me now. What kind of treatments have some of you had, what works the best. Is there hope or am I just being told that by the Docs out of kindness and the value of a lot of treatments. I guess I am sort of lost right now I have been dealing with one death sentence with the hope of a transplant as the only source of relief, but now even if the cancer goes in remission I can not be placed on the list for a minnium of 5 years from the day they say I am cured. No male member of my family who has had this disease has ever lived past the age of 59. that leaves me just about 8 years. i KNOW THIS SOUNDS AS IF i HAVE GIVEN UP HOPE BUT I HAVE NOT sooner or later one of us are going to beat the odds. When I first found out about the PKD I went home and cried like a whipped pup, the Doc told me I would be lucky to live 5 more years, that was 16 years ago. I started off asking WHY ME WHAT DID I DO WRONG! then I sat down and it occured to me why not me what had I done that gave me the divine right not to be the one from my generation to get PKD, and that is the way I am going to approach this cancer I just want to hear from others who know how I feel not some social worker who says I understand and youneed to do this. well you know that is like a virgin telling you sex is not all that it is cracked up to be. If you aint been there how would you know. So let me hear from you the ones riding in that sail boat, give me a compas and help me find a way and let me know the pit falls and if there are any what good can come out of this.

Thanks Dennis

pinkmada · 08-30-2008, 03:30 AM

Hey Dennis,
Welcome to the board. Everyuone on here are really great and are here for you with any questions.
They need a biopsy to determine what kind of lymphoma you have (either hodgkins or non-hodgkins) both are very treatable. then they would do a bone marrow biopsy and take a sample of your bone at the same time. this is usually done with a local anaesthetic. they do this to find out if the lymphoma has infiltrated your bone marrow in which case the treatment options would be different. once they have determined the stage of the lymphoma they will then begin treatment. everyone is different, they take into account your sex/age/staging of the disease/any 'B symptoms' such as night sweats, itching, fevers and what you blood work shows. I had stage 3b hodgkins lymphoma and recieved 6 months of ABVD chemotherapy. Some people on this board recieved chemo and radiotherapy and others with different regimes of the chemo such as CHOP or R-CHOP. some patients are only treated with radiation. i have been in remission a year now. i am in the UK so i dont know what the 'VA' is. i had several masses throughtout my chest and abdomen but there were no lumps or bumps for many months. everyone seems to present differently with this disease.

anyways, take care and please keep us posted with what the doctors say.
love
amanda
x

highlandpoppy · 09-01-2008, 01:07 AM

Thanks Amanda, for reply I forget that this is indeed the world wide web, VA stands for the Veterns Adminastration. This is the part of our US government that is in charge of caring for Veterans of the military, I myself served 8 years in the service of my country. I spent three years in Germany back when there was a soviet border 1979 to 1982. Even though that was a challenging assingment my wife and I loved Europe, our only regret was not getting to travel and see more of it. We enjoyed going off the tourist beats and preferred to go to small towns and villages and travel the back roads verses the Autobahn. We got to meet and socialize with some of the nicest people in the world. but this is not a travel board. I thank you for your welcoming letter and the information. The VA is noted for the confusion and the extreme ability to make a 30 minute job last for weeks. But since we do not have universal health coverage here in our so called enlightened country I can not afford to go to public hospitals for one nights stay in a hospital here at home it cost me $800 dollars for the room and in 24 hours the bill rang up to be eight thousand nine hundred dollars. my share with the insurance I do have will be over two thousand dollars. So you can see if it was not for my military service I would lose every thing we own and be forced to go bankrupt. well more later and again thanks.

lymphpre · 09-01-2008, 03:45 AM

Hi Dennis,
welcome to the forum. I am sorry to hear about your situation. It is really difficult not to give up hope. I know a lot of people believe you must be positive all of the time, and that is what works for them. But at times, this stuff does overwhelm you, and you just have to sit back and say this all really sucks!!

I followed most of your post, but I am less familiar with the role of PET. This is because I am in the U.K., where PET scanners are still quite rare, and I have never been treated in a centre that has one. I take it that the diagnosis of lymphoma is based primarily on the fact that your nodes and spleen are lighting up on the scan? As Amanda says, they really need to get some affected tissue under a microscope to determine what type of lymphoma you have, which determines what treatment they might suggest. They will want a bone marrow sample for completeness, but that is in addition to, rather than as a substitute for, a lymph node biopsy.

Please do keep us informed as you find out more. This forum has a lot of knowledgeable people on board, but it is also useful for simple words of support and encouragement. I certainly post on here when I am worried (frequently) about something, and it is rare that someone does not reply.

Take care and please make use of this forum, as it really is a great resource.
Best wishes
Simon