Posting those is a good idea, Mocha.
Thanks, Ken. I hope it helps those desperately seeking answers. I highly recommend the book to those who have been diagnosed. The internet is a great resource, but sometimes I also like to have some good ol' fashioned books on hand when I have questions.
I have a question because you seem to know what you are talking about, can you see lymphoma in the liver? I have been getting tests back with high ALT AST liver funtion tests
150 ALT 66AST
My doc has ruled out almost everything and i had an ultrasound which revealed nothing....
I am 23 6'0 109lb male, could i have some sort of lymphoma in a lymph gland in my liver.
Yes, lymphoma can be found in the liver. Funny that you ask me about this because I too have a spot on my liver that is questionably lymphoma (depending on which doctor you talk to). My original oncologist thought it was lymphoma because it seemed to shrink somewhat during chemotherapy. My new oncologist doesn't think it's lymphoma and says he thinks it's a cyst. The only way to know for sure is with a biopsy, however, because that is such an invasive proceedure, the doctors don't want to do it. They say it wouldn't change my treatment plan anyway so no need to really know for sure. They are keeping an eye on it however and if it gets bigger we will think about a stronger treatment. Sorry to run on and on about myself, but I can only draw from my own experience with this matter.
I don't know much about liver function tests either since I have never had one. Can you explain why you had a liver function test?
Hello, my husband was diagnosed with low grade lymphoma just last night. He had some thickening in his colon which they biopsied and preliminary status is low grade lymphoma. However, he was told to get a small bowel series and pet scan. Dr. said based on preliminary biopsy, he thinks it's low grade and will have to wait for results of more in depth biopsy to stage it, etc. and also for other test results. I am terrified....is lymphoma survivable, what are the survival rates, and what is usually the form of treatment? He is 59 years old and in good health over all. He had a bacterial infection in his colon which is why he had colonoscopy and he has diverticulitis. Other than that, he is a healthy, active man. Please someone tell me he will live with this for many many years!!
I'm so sorry to hear about your husband. I know this is an extremely difficult time for you and him, but please know it's not as bad you might think.
There are several types of slow growing (indolent) lymphoma. Follicular is the most common type (which is what I have), but there are a few others considered indolent too. First, let me just tell you that most of the statistical data you read on the internet is wrong. You may have read something along the lines of survival being around 10 years, but this data is obsolete for several reasons. One, the statistical data on survival with the use of moniclonal antibodies (such as Rituxin) hasn't been updated. Monoclonal antibodies has been huge in the lymphoma world, and simply put, there hasn't been enough lapsed time to record the survival data since the use of them. There are many people out there who have survived 20 plus years with this disease (and still going). Really. I've talked to them myself. And two, lymphoma typically is diagnosed in older people in their 60's who often have other serious ailments at the time of diagnosis. This information isn't weeded out of the statistical data when figuring mortality rates.
Indolent lymphoma is not curable, but it is managable, much like any other chronic type of disease. It is often referred to as a chronic disease because typically you treat it (usually with Rituxin plus some kind of chemotherapy regimin) whenever the symptoms show up (like swollen lymph nodes, fevers, night sweats, weight loss, etc). You may even hear the term "watch and wait", which seems crazy to most, but studies have shown that there really isn't an advantage to treating indolent lymphoma until symptoms occur or will probably occur with in the year. I personally was asymptomatic other than a swollen node, but because the doctors thought it was likely I would begin having symptoms with in the year they thought it was reasonable to start treatment.
Because you are so new to this, I would like to recommend that you look into the Lymphoma Research Foundation. You can go to their website at Lymphoma.org. There's lots of information there. I would also like to recommend that after your husbands final diagnosis, that he seek a second opinion at a large cancer research facility. You may have to travel some, but it is well worth the trip, even if they agree with your local doctor because it helps put your mind at ease.
Hi Mochadelicious, I am so grateful to you for your response and all the information. You have no idea how much you have helped me!! You are right, all the info on the web puts survival rate at 10 years and that scared me to death. I definitely intend to take him to a major cancer hospital, more than likely, Sloan-Kettering, for a second opinion, once all the tests are done. Just the thought that he can live a normal lifespan with this has brought so much comfort. Thank you from the bottom of my heart. I can already tell that I will be logging in here frequently over the next months, even years!! Thank you so so much!!
You are so welcome, Eileen. I'm glad I can help. I did the exact same thing when I was first diagnosed; went straight to the internet, which scared the socks off me. It wasn't until several week later that I came to realize I wasn't living such as short of a death sentence than I originally thought.
I'm happy to hear that you plan on a second opinion at Sloan-Kettering. I hear that's a good place to go. I got mine at Fred Hutchinson in Seattle. It was quite a drive for us but it surely put my mind at ease. I know you are just starting this journey, but if you get a chance I would highly recommend that you and your husband attend a lymphoma conference put on by the Lymphoma Research Foundation. I went to one (in Seattle), and it was phenominal. It was coordinated with the Fred Hutch doctors and was extremely informative. I know LRF travels all over the nation to give these conferences so they may have one coming near you. You might check the website to see when and where the future conferences are going to be held.
Please keep us posted on your progress and please feel free to send me a personal message if you have any more questions.
So here I am again with my mind racing in a million different directions! I alternate between sheer terror and certainty that my husband wiii be ok. I hope you won't mind if I ask you more questions of a more personal nature. How long ago were you diagnosed, at what stage, what treatments have you had, is remission a word that is used with lymphoma?D id you have any symptoms that sent you to the doctor? How are you feeling now? Until his colonoscopy we had no idea lymph nodes were in every corner of the body! My husband has no symptons, had a clean cat scan and clean blood work 2 weeks ago. Is this in his favor? Do you think the doctor would have said it was low-grade lymphoma even though it was the preliminary pathology report without being sure? I am terrified that tomorrow's pet scan will reveal even more bad news or that the small bowel series on Thursday will. Thak you again for your patience and time and please accept my apology if I am being too intrusive...this site is a God-send and so are you!! Eileen
I am happy to answer your questions. It's perfectly natural to have lots of questions. I encourage lots of questions, actually. It's at this point that you and your husband need to be vigilant in his care by doing lots of research and asking lots of questions. As I said at the beginning of this post, you might want to head to your local library or even better, purchase online the book "Living with Lymphoma" by Elizabeth Adler. It's probably the best book I've found on lymphoma and I often refer to it when I have questions.
Mine is quite a long story. I was diagnosed in May of last year at the age of 36. It took over 3 years to get properly diagnosed. I first developed a small lump on my breast and had it checked out by my gynocologist. He sent me for a mammogram which came back as a "thickening" but said it wasn't anything to really worry about. The following year I developed another, much larger lump on the same breast. I went back to my gynocologist who referred me to a general surgeon who ended up doing an excissional biopsy on both lumps (where they take them out completely and biopsy). The biopsy came back benign on both. Then, the next year after that I developed a third lump on the same breast. I went to a different general surgeon who did a punch biopsy. This time it came back as suspicious for lymphoma. The sample, along with the previous biopsy samples, were sent to a larger lab in Seattle for confirmation. It was determined that all three lumps were lymphoma.
I had no other symptoms other than the lumps. My blood work was normal too. I was stage 3, grade 3 follicular lymphoma. The biopsy showed that some areas under the microscope showed aggressive disease and my doctors thought I would probably start developing B symptoms with in the year (B symptoms are night sweats, fever and weight loss). Some people also develope itching. They recommended R-CHOP therapy. R stands for Rituxan (the monoclonal antibody that I spoke of earlier). CHOP is a chemotherapy regimin made up of 4 drugs, each letter represents a drug.
I did R-CHOP every 3 weeks x 6 treatments. I responded very well to the therapy and I am currently doing something called R-maintenance. Again, R stands for Rituxin, only this time I get it alone with no other drugs. The plan is to do this every 2 months for 2 years. I'm currently half way done with this and still doing very well.
You can say I'm in remission, but because indolent lymphoma isn't curable, I will most likely get this again. Because the cancer grows so slowly, it makes it nearly impossible to kill each and every cancerous cell in the body. The CT and PET scans are all clean now, but most likely I still have cancerous cells microscopically floating around in my body that the chemotherapy didn't kill. At some point these cells will probably start collecting in the lymph nodes again and start causing B symptoms.
I want to tell you that PET scans are notorious for revealing false positives. My first PET scan put me in a tizzy because I had so many spots light up, which I later found out was not all cancer. PET scans can pick up infections and muscle activity but can't distinguish them from cancer. Your husband will have to sit very still for about an hour before his scan. Tell him not to suck on cough drops or candy before the scan (I did this and sure enough my lower jaw lit up from the muscle activity).
Your husband's biopsy samples were probably sent to a local pathology lab which then gave his doctor the preliminary report. Then they probably sent the samples to a larger lab out of town for confirmation and more in depth testing. This seems to be a pretty standard protocol, especially if you live in a small town. I personally was glad to have a larger more advanced lab looking at the samples. Do I think it's premature to diagnose indolent lymphoma from the preliminary report? No. Of the 61 or so different kinds of NHL out there, labs can pretty much distinguish one from another under the microscope by how they look and how they respond to certain chemical compounds. Not to say they can't be wrong, but the final report will confirm that.
Good luck tomorrow and please let me know how it goes. You and your husband are in my prayers.
P.S. You should really start keeping copies of all your husband's medical records. Ask your doctor for a copy of the PET scan report along with any other scans or tests he has done. Blood work is also good to keep.
Thank you so much....I think I'm at the point where what is unknown is somehow worse than the knowing! I am able to stay calm and collected, optimistic when we are at home together but here at work or alone, I just go to pieces. I keep telling myself this is not a death sentence but I have moments where the fear just takes over. I am in awe of your optimism and am so grateful that you are doing so well. You have been such a tremendous source of information and comfort and I am so indebted to you! I will post again once the PET scan is done! Thank you for your prayers and I will keep you in mine as well! Eileen
PET scan done, now on to the small bowel series scheduled for Thursday. Oncologist appointment is scheduled for Nov. 28. So right now we are at the hurry up and wait stage. Just wish we had the pet scan answers. I guess the doctor wants to gather all the test results before he sees my husband. I have calmed down quite a bit, surprisingly, but I'm not sure why since I can cry at the drop of a hat. I keep telling he will be ok, he will be ok....like a chant that goes on in my head constantly. I am going to the bookstore after work to buy the book you recommended. Just want to say thank you again....you are an inspiration and I am so grateful to have you on my side!!!