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More facts and tidbits about lymphoma...
I have a very good book called Living with Lymphoma by Elizabeth Alder. Ms. Alder is a nuerobiologist who was also diagnosed herself with lymphoma. It is filled with tons of scientific facts and information. It has become my lymphoma bible and I often turn to it for answers to my own questions. I was thinking that I would like to occasionally post and share some interesting facts and tidbits that might help others researching lymphoma. I will title my posts "More facts and tidbits about lymphoma".
So here goes...
-The most common symptom of lymphoma is painless enlargement of one or more lymph nodes. In fact, in over two-thirds of persons with lymphoma, visible enlargement of lymph nodes is the symptom that sends people to the doctor. In both Hodgkin Lymphoma and NHL, lymph node enlargement is most frequently noticed in the lymph nodes of the neck. Nodes in the groin and armpit are commonly enlarged in NHL as well. Slow growing forms of NHL--often called low-grade or indolent NHL--often involve widespread node enlargement affecting multiple nodes.
So here goes...
-The most common symptom of lymphoma is painless enlargement of one or more lymph nodes. In fact, in over two-thirds of persons with lymphoma, visible enlargement of lymph nodes is the symptom that sends people to the doctor. In both Hodgkin Lymphoma and NHL, lymph node enlargement is most frequently noticed in the lymph nodes of the neck. Nodes in the groin and armpit are commonly enlarged in NHL as well. Slow growing forms of NHL--often called low-grade or indolent NHL--often involve widespread node enlargement affecting multiple nodes.
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.
thanks
ian
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.
thanks
ian
Hi Ian,
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?
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!!
Hi Eileen,
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.
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!!
Eileen
Eileen
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.
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
Hi 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.
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!!!
COMMUNITY LEADER
When I was taking care of my father during his lymphoma, I would always ask the testing center to mail a copy of the report out directly. That way, I wouldn't have to wait for a doctor to supply it. If the center refused, I'd never take my father there again. That happened only once.
(Although AFAIK successive PETS should be done at the same place on the same machine.)
You can post the relevant text here if you like. Good luck.
(Although AFAIK successive PETS should be done at the same place on the same machine.)
You can post the relevant text here if you like. Good luck.
Oh yes...the hurry up and wait phase. How I remember it well. They should just call it the torture stage really. I too had moments where I felt earily calm and other moments where I'd start crying at nearly anything. I still do to some degree, but I have a lot more calm moments now.
I think the book will be very helpful for you. I was able to pick up a gently used one at Amazon.com for less than $5. Once I started reading it, I couldn't put it down. I was hungry for answers (as I'm sure you are too).
At the hospital where I get my scans, I can request via the radiology department copies of my scans for my own records. It usually takes them a day or two to get them ready, but they will actually put it on a disc for me and give me the paper report too. I can actually pop the disc into my computer and see my scan. Your hospital may do the same, but your husband may have to sign a release of information form first. He may have already done that, but if not, make sure he lists you as someone he gives permission to release information to.
Well good luck next week. The wait will probably be difficult, but maybe the hustle and bustle of the upcoming holidays will help keep your mind busy. Keep me posted when you get the results, and if there's anything else I can do to help please let me know.
You are what I consider "the good that has come from my cancer" because without people like you, I wouldn't be able to pay it forward. If I can't pay it forward, why the heck did I get cancer? It's the only logical reasoning I have. :-)
I think the book will be very helpful for you. I was able to pick up a gently used one at Amazon.com for less than $5. Once I started reading it, I couldn't put it down. I was hungry for answers (as I'm sure you are too).
At the hospital where I get my scans, I can request via the radiology department copies of my scans for my own records. It usually takes them a day or two to get them ready, but they will actually put it on a disc for me and give me the paper report too. I can actually pop the disc into my computer and see my scan. Your hospital may do the same, but your husband may have to sign a release of information form first. He may have already done that, but if not, make sure he lists you as someone he gives permission to release information to.
Well good luck next week. The wait will probably be difficult, but maybe the hustle and bustle of the upcoming holidays will help keep your mind busy. Keep me posted when you get the results, and if there's anything else I can do to help please let me know.
You are what I consider "the good that has come from my cancer" because without people like you, I wouldn't be able to pay it forward. If I can't pay it forward, why the heck did I get cancer? It's the only logical reasoning I have. :-)
I wish i could wake up tomorrow and find this was all a bad dream. How , why did this happen? He's a good man who has been through so much in his life, why him ? His children adore him , he has 2 beautiful grandsons, and he's been the love of my life since I was 13.......why? Why him, why you, WHY?? Not a good day today, so hard to stay upbeat, optimistic. The wait for results is torturous, yet part of me doesn't want to know. I so admire your outlook, your understanding, your kindness....thank you for "listening" to my rant. Tomorrow will, hopefully, be a better day.
You do more than pay it forward...you are a lifeline for me and I am so appreciative! I don't think there is any reasoning behind who gets cancer and who doesn't.....I have been praying so hard for answers and there just aren't any. So now I will continue to pray but will also pray for a cure!
I've had many of those days myself. I hope today is a better day for you. They say God doesn't give us more than we can handle, right? So I took that as God must think I'm a much stronger person than I ever gave myself credit for. Now I have this sense of strength that I never had before. If something challenging comes my way, I tell myself "hey, if I can beat cancer then I can do this". It really has put things in perspective. I know you aren't the one with cancer, but because you are so close to someone that does, it's just as tramatic.
By the way, how is your husband handling all of this? It's very important to talk about your feelings together. It's pretty common to both clam up about how eachother is feeling because we always want to present ourselves as strong and positive towards the other person and never show fear or anger. It's a very strange dynamic that can happen between a couple and a cancer diagnosis.
Keep your chin up Eileen and know you are not alone in this.
By the way, how is your husband handling all of this? It's very important to talk about your feelings together. It's pretty common to both clam up about how eachother is feeling because we always want to present ourselves as strong and positive towards the other person and never show fear or anger. It's a very strange dynamic that can happen between a couple and a cancer diagnosis.
Keep your chin up Eileen and know you are not alone in this.
Last night we were awake until 2:00 in the morning talking. He is not much of a talker but last night he let alot out. He is afraid he is going to die and not see our grandchildren grow up. He is afraid of the treatment, we are just terrified of the unknown. I saw an article last night regarding MCL (I think that was it) lymphoma and it scared me to new heights. It says it starts in the gastric area and that where they found his lymphoma and that it doesn't really respond to treatment. So here I sit, sick to my stomach and more scared then I have ever been in my life. The doctor has the final pathology report, and the PET scan results but will not give me any answers but is supposed to call my husband this afternoon. The wait is killing me because now I think it's the worst possible scenario. I am praying to God for strength for my husband and for me so that I can help him somehow, be strong for him.
Ok..here goes. Pet scan showed only the area in the intestine where the initial biopsy was taken. Showed a small spot on liver but he has had that same spot for years.....a fatty something. Otherwise pet dcsn wwas clean. My initial reaction was joy. Then we were told the pathology report states that biopsy showed " charateristics" of mantle cell lymphoma. There goes the joy. Still need to have small bowel series done tomorrow to "rule out" amy areas there. (Wouldn't the pet scan show any problems there?). Then we see oncologist on nov. 28. Dr said they can't stage it yet. Isn't mantle cell the worst one to have? My husband thought he was ok and initoally, i thoight the pet scan lookimg pretty good was also a plus. Back to the unknown and fear. The joy is gone.
I must say the PET scan does sound very promising. I'm not really understanding why they are doing the small bowel series if they didn't see anything on the PET in that area, but maybe they just want to be sure.
Actually, my next door neighbor has Mantle Cell lymphoma. His was pretty aggressive and in several areas of his body. He ended up having a stem cell transplant using his own stem cells. A SCT is a pretty aggressive treatment all in itself, however using your own stem cells is less risky than using someone elses stem cells because you're not introducing anything foreign into your own body. The kicker is sometimes a SCT using someone elses stem cells may have more of a chance for a cure, but it is much more riskier to do. Mantle cell falls somewhere between indolent and aggressive but the way I understand it, it reoccurs like other indolent lymphomas. BTW, my neighbor is currently doing very well now and his scans are clean 1+ year out.
Just going by the PET scan alone, it sounds like it is only in one spot, possibly stage 1. If that's the case, localized radiation may be an option for him. Did you husband have a bone marrow biopsy yet? This too affects the staging of disease. They will probably want to do that too so they can verify if it's in the bone or not. If it's in the bone I don't think radiation would be an option. The pathology report will determine the grade, or how aggressive the disease is behaving.
Ken, our other CL on this board, probably knows quite a bit more on Mantle cell because this is what his father had. He may be able to shed some more light on the subject. Ken, if you're reading this...any comments?
I'm glad to hear you two had a good talk together. You are a team fighting the same disease and it's good to know how the other is feeling. And Eileen, it would be good for you to find someone close to talk with. You are your husband's support but someone needs to be supporting you too. And of course, your extended internet family is here for you too. :-)
You can do this.
Actually, my next door neighbor has Mantle Cell lymphoma. His was pretty aggressive and in several areas of his body. He ended up having a stem cell transplant using his own stem cells. A SCT is a pretty aggressive treatment all in itself, however using your own stem cells is less risky than using someone elses stem cells because you're not introducing anything foreign into your own body. The kicker is sometimes a SCT using someone elses stem cells may have more of a chance for a cure, but it is much more riskier to do. Mantle cell falls somewhere between indolent and aggressive but the way I understand it, it reoccurs like other indolent lymphomas. BTW, my neighbor is currently doing very well now and his scans are clean 1+ year out.
Just going by the PET scan alone, it sounds like it is only in one spot, possibly stage 1. If that's the case, localized radiation may be an option for him. Did you husband have a bone marrow biopsy yet? This too affects the staging of disease. They will probably want to do that too so they can verify if it's in the bone or not. If it's in the bone I don't think radiation would be an option. The pathology report will determine the grade, or how aggressive the disease is behaving.
Ken, our other CL on this board, probably knows quite a bit more on Mantle cell because this is what his father had. He may be able to shed some more light on the subject. Ken, if you're reading this...any comments?
I'm glad to hear you two had a good talk together. You are a team fighting the same disease and it's good to know how the other is feeling. And Eileen, it would be good for you to find someone close to talk with. You are your husband's support but someone needs to be supporting you too. And of course, your extended internet family is here for you too. :-)
You can do this.
Again, you are the voice of reason for me! I thought the same thing about the small bowel series. No bone marrow biopsy yet. Maybe the oncologist will order that? My daughter read about stem cell transplants and a friend of a friend had one and is considered cured.....such a wonderful word!! i pray that's a word we will all hear one day! I also spoke with my best friend and my sister-in-law which helped. I have to take this one day at a time, be grateful for any good news and just keep pushing forward. My husband and I both need to come to terms with this and keep living our lives. I am so thankful I can come here to vent, for info, for reassurance! Meltdown is over....time to stop feeling sorry for myself and him and get on with it!! Thank you a million times over!!
I bet the oncologist will order the bone marrow biopsy. Just to prepare you, it took some time (several weeks I think) to get staged and graded. After he is staged and graded, his oncologist will probably suggest a treatment plan. At that point, you might want to consider asking the oncologist for a referal for a second opinion at Sloan-Kettering. Cancer doctors are very used to being asked this and shouldn't even blink an eye at it. If they do, find another doctor. We're not talking about a hang nail here.
There are so many different treatment options out there like chemotherapy, localized radiation, stem cell transplants, and targeted therapies such as monoclonal antibodies, immunoconjugates, proteasome inhibitors, and Histon Deacetylase Inhibitors (HDAC's). On top of this, scientists are continually examining new uses for established agents and are also exploring how to create newer versions of existing therapies to make them more effective and less toxic. It really is amazing what science is doing right now.
And you are not feeling sorry for yourself, far from it actually. If you didn't feel this way I'd say you didn't have a pulse. But it is good when you decide to pick yourself up by your bootstraps and decide to think positive thoughts and take on a fighters mentallity. (Not to say you won't slip back into negative thoughts sometimes.)
There is a saying I gravitate to whenever I start to get down. It goes like this: Without faith and hope you have nothing, but with it you have nothing. I actually have a plaque that says this and it sits displayed in my living room. There are many positive saying out there and maybe you will find one that helps you get through the rough moments. You also might consider taking an occasional Benedril at night to help you sleep.
And...as always, I'm happy to help.
There are so many different treatment options out there like chemotherapy, localized radiation, stem cell transplants, and targeted therapies such as monoclonal antibodies, immunoconjugates, proteasome inhibitors, and Histon Deacetylase Inhibitors (HDAC's). On top of this, scientists are continually examining new uses for established agents and are also exploring how to create newer versions of existing therapies to make them more effective and less toxic. It really is amazing what science is doing right now.
And you are not feeling sorry for yourself, far from it actually. If you didn't feel this way I'd say you didn't have a pulse. But it is good when you decide to pick yourself up by your bootstraps and decide to think positive thoughts and take on a fighters mentallity. (Not to say you won't slip back into negative thoughts sometimes.)
There is a saying I gravitate to whenever I start to get down. It goes like this: Without faith and hope you have nothing, but with it you have nothing. I actually have a plaque that says this and it sits displayed in my living room. There are many positive saying out there and maybe you will find one that helps you get through the rough moments. You also might consider taking an occasional Benedril at night to help you sleep.
And...as always, I'm happy to help.
Oops...okay, I shouldn't be up so late, it's affecting my brain. The saying should be: "Without faith and hope you have nothing, but with it you have everything" (not nothing).
Tee-hee. That was kind of funny.
Tee-hee. That was kind of funny.
I love your optimism and positive thinking! Right now he is in the process of having the small bowel series. I am again praying it is clean and am hopeful since the pet scan didn't show any hotspots in that area at all. I would think if there was something there, it would have shown on the pet. My hope is that this was caught early enough that there is the possibility of wiping it out right away with chemo or whatever is necessary. I realize mantle cell is very aggressive but hoping the early diagnosis is on our side. I know there is no cure but there are times of remission.....my intent is to keep him in those periods. We will do whatever is necessary and Sloan-Kettering is the next step after the oncology appt after Thanksgiving. We have much to be thankful for......this could have been diagnosed much, much later. Hopefully the early diagnosis is on our side. Bless you and your family, Mocha. I hope you realize the good you do here!!!
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