Newly Diagnosed NLPHL.

Just wondering if someone newly found out about NLPHL? My doctor is only asking for CT Scan. 

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Comments

  • Me too...

    Hi Jazmin! I just received a diagnosis of NLPHL yesterday 9/14. I am scheduled for blood work and a PET/CT on Thursday and a bone marrow biospy / aspiration on Friday. I haven't been too successful yet finding information or support online for this yet. HL is rare for lymphoma and NLPHL is the rarest of the HL's.

  • Jazmin2
    Jazmin2 Member Posts: 18

    Me too...

    Hi Jazmin! I just received a diagnosis of NLPHL yesterday 9/14. I am scheduled for blood work and a PET/CT on Thursday and a bone marrow biospy / aspiration on Friday. I haven't been too successful yet finding information or support online for this yet. HL is rare for lymphoma and NLPHL is the rarest of the HL's.

    I am having second thoughts..

    My doctor somehow only wants to get CT scan done, even though every where I read it is suggested that PET needs to be done. I am calling Hopkins tomorrow to get some more information. 

    I did the blood work today and getting a CT scan on saturday. But I will go for a PET also but need to talk to my physician and Hopkins tomorrow. What I have heard is that right diagnosis is the most important thing. My physician said to feel comfortable getting second opinions. 

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Jazmin2 said:

    I am having second thoughts..

    My doctor somehow only wants to get CT scan done, even though every where I read it is suggested that PET needs to be done. I am calling Hopkins tomorrow to get some more information. 

    I did the blood work today and getting a CT scan on saturday. But I will go for a PET also but need to talk to my physician and Hopkins tomorrow. What I have heard is that right diagnosis is the most important thing. My physician said to feel comfortable getting second opinions. 

     

     

    Hope

    Jazmin2,

    Welcome to CSN Boards.  Several members here, including myself, have had NLPHL (two or three new cases in the last two months in fact).

    While NLPHL is rare, it is also very indolent (non-aggressive, slow moving) and is almost always easily put into full remission. It is usually treated straighforwardly as a form of HL. Stages 1 and 2 are ordinarily treated with radiation and/or chemo (many studies suggest that using BOTH is more effective that just one or the other), whereas Stages 3 and 4 are treated with chemo only.  The most common chemo used agaisnt it is R-ABVD, but R-CHOP is substituted by some doctors. Other chemo combinations are possible also. 

    As long as your biopsy is confirmed by a good lab, in most cases a person can be successfully treated for this disease at most regional or local cancer centers.  One need not search the earth for an expert, since it is not one of the tougher lymphomas to kill off.  Going to a place like Johns Hopkins will cost more, but otherwise is probably of no benefit at all. This is true of most cancers:  unless one is dealing with an extremely complex or aggressive disease with no treatment protocols, there is no reason to travel huge distances and spend an addition fortune to get the same care you could get in your home town.

    I had advanced Stage 3 in 2009. I did six months of R-ABVD (never any radiation), and have been in complete remission since. Every NLPHL patient here in the last few years has gone straight in to complete remission,and none of whom I am aware has suffered any form of relapse.

    max

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member

    Me too...

    Hi Jazmin! I just received a diagnosis of NLPHL yesterday 9/14. I am scheduled for blood work and a PET/CT on Thursday and a bone marrow biospy / aspiration on Friday. I haven't been too successful yet finding information or support online for this yet. HL is rare for lymphoma and NLPHL is the rarest of the HL's.

    NLPHL

    Better survival rates than most other forms of HL:

    http://www.ncbi.nlm.nih.gov/pubmed/25863756

    Discusses most common treatments:

    http://www.ascopost.com/issues/december-15-2011/how-should-we-treat-nodular-lymphocyte-predominant-hodgkin-lymphoma.aspx

    A more technical, scientific discussion of the particulars of the disease, including cell types, etc.:

    http://asheducationbook.hematologylibrary.org/content/2013/1/406.full

     

  • Jazmin2
    Jazmin2 Member Posts: 18

    NLPHL

    Better survival rates than most other forms of HL:

    http://www.ncbi.nlm.nih.gov/pubmed/25863756

    Discusses most common treatments:

    http://www.ascopost.com/issues/december-15-2011/how-should-we-treat-nodular-lymphocyte-predominant-hodgkin-lymphoma.aspx

    A more technical, scientific discussion of the particulars of the disease, including cell types, etc.:

    http://asheducationbook.hematologylibrary.org/content/2013/1/406.full

     

    Thank you Max!!

    I am waiting for my cat scan on saturday and see what doctor say. I still wonder why not PET. But I guess one thing at a time. For right now my brain is fried with so much information. 

     

     

  • lindary
    lindary Member Posts: 711 Member
    Jazmin2 said:

    Thank you Max!!

    I am waiting for my cat scan on saturday and see what doctor say. I still wonder why not PET. But I guess one thing at a time. For right now my brain is fried with so much information. 

     

     

    PET

    I believe PET is a much higher dosage of radiation than a CT scan and it costs more. I had an unltra sound plus several CT scans before the drs felt it was time for PET. You should check internet of CT versus PET.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Jazmin2 said:

    Thank you Max!!

    I am waiting for my cat scan on saturday and see what doctor say. I still wonder why not PET. But I guess one thing at a time. For right now my brain is fried with so much information. 

     

     

    PET

    Many centers now have combined PET/CT.  I never had a PET before chemo -- CTs only for staging. My first PET was about two months into treatment to assess effectiveness.

    Most of my CTs were "with contrast", which takes a good bit longer than a CT without contrasting dye. A PET is longer still; plan to be at least an hour for any PET appointments.

     

    Regarding radiation, all doctors have just said that "the scan is absolutely critical."

  • Jazmin2
    Jazmin2 Member Posts: 18

    PET

    Many centers now have combined PET/CT.  I never had a PET before chemo -- CTs only for staging. My first PET was about two months into treatment to assess effectiveness.

    Most of my CTs were "with contrast", which takes a good bit longer than a CT without contrasting dye. A PET is longer still; plan to be at least an hour for any PET appointments.

     

    Regarding radiation, all doctors have just said that "the scan is absolutely critical."

    Oh Really!

    I thought everyone had a PET before therapy. I have a CT tomorrow morning and doctor said it is for staging. All blood work is done to check all the organs. I am very anemic and worried that it will cause a problem in therapy. 

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Ct

    CT is the norm before chemo begins. They will measure the size of the nodes and what areas they are in for later reference . This is standard practice, and he is not omitting anything.

  • Rocquie
    Rocquie Member Posts: 858 Member

    Ct

    CT is the norm before chemo begins. They will measure the size of the nodes and what areas they are in for later reference . This is standard practice, and he is not omitting anything.

    PET/CT

    Me too. I only had CT scans before treatment began and my first PET/CT after two chemo treatments.

    A CT scan ordered by my Family Doctor resulted in a diagnosis of Lymphoma. A CT guided retropertoneal needle biopsy confirmed the diagnosis and I was referred to my Hematologist/Oncologist. He ordered an ultrasound guided excision of an axillary lymph node to determine the type of lymphoma. Also a bone marrow biopsy to confirm the stage three lymphoma the original CT scan had shown. (If I had bone marrow involvement the stage would have been stage four, but I did not).

    Best,

    Rocquie

     

     

  • Jazmin2
    Jazmin2 Member Posts: 18

    Ct

    CT is the norm before chemo begins. They will measure the size of the nodes and what areas they are in for later reference . This is standard practice, and he is not omitting anything.

    Are you?

    Are you on any kind of medication now? do we have to be on some kind of medication for rest of our lives? 

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Jazmin2 said:

    Are you?

    Are you on any kind of medication now? do we have to be on some kind of medication for rest of our lives? 

     

     

    Unsure of whom you were

    Unsure of whom you were asking this question of, but if first-line therapy is successful against NLPHL, there is no further treatment given.

    Numerous forms of NHL do require follow-up drugs, sometimes for many years.  This is called "maintenance"  therapy, and the drug most commonly used is Rituxan.  But as I said, this should not be in your treatment future, Jasmin.

  • OO7
    OO7 Member Posts: 281
    Jazmin2 said:

    Oh Really!

    I thought everyone had a PET before therapy. I have a CT tomorrow morning and doctor said it is for staging. All blood work is done to check all the organs. I am very anemic and worried that it will cause a problem in therapy. 

     

     

    PET

    Sorry for your diagnosis.

    Not sure if this is pertinent or not but I did have a CT first then a PET before treatment then another one after Treatment.   Mid way through I also had another CT. 

    I'm a fan of any scan due to radiation exposure and being severely clasterphobic but mine was for staging.  I went from stage one to four, obviously finding more than they realized.  My cancer NHFL, diplayed in a swollen lymph node in my jaw line.  The pet scan showed it was not just there but several places through out my body.  

    Personally I wished I hadn't gone through the two CT, X-RAYs, ULtra sounds, image guided biopsies and just had the PET scan.

    In my experience i went through many unnecessary tests that the PET obtained more information than all of them combined.

    Good Luck!

  • Jazmin2
    Jazmin2 Member Posts: 18

    Unsure of whom you were

    Unsure of whom you were asking this question of, but if first-line therapy is successful against NLPHL, there is no further treatment given.

    Numerous forms of NHL do require follow-up drugs, sometimes for many years.  This is called "maintenance"  therapy, and the drug most commonly used is Rituxan.  But as I said, this should not be in your treatment future, Jasmin.

    I was asking everyone :-)

    I was just wondering if we all have to be on life time medications. 

  • OO7
    OO7 Member Posts: 281
    Jazmin2 said:

    I was asking everyone :-)

    I was just wondering if we all have to be on life time medications. 

    Meds

    I am not, I only take B12 and folate because I'm a vegetarian.

    I will tell you, my original treatment was to have Rituxan and then maintenance of Rituxan for two years. I went to a specialist at Dana-Farber Cancer Institute in Boston in May and he recommended  not to do maintenance for two years.  My first doctor told me I would need maintenance for two years and my specialist said there's  evidence or need for the two years of maintenance. I'm not sure what your doctor will tell you, we're all different as are our  doctors. 

     Good luck and I hope this helps .

  • Jazmin2
    Jazmin2 Member Posts: 18
    OO7 said:

    Meds

    I am not, I only take B12 and folate because I'm a vegetarian.

    I will tell you, my original treatment was to have Rituxan and then maintenance of Rituxan for two years. I went to a specialist at Dana-Farber Cancer Institute in Boston in May and he recommended  not to do maintenance for two years.  My first doctor told me I would need maintenance for two years and my specialist said there's  evidence or need for the two years of maintenance. I'm not sure what your doctor will tell you, we're all different as are our  doctors. 

     Good luck and I hope this helps .

    Going For PET now

    Saw the doctor today, he said CT shows some very small swollen nodes in my neck also. He asked for getting a PET done. He said it is very important to make sure about the stage of the disease. He is hopeful. 

    So let's see!!! for now praying! :-) 

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Jazmin2 said:

    Going For PET now

    Saw the doctor today, he said CT shows some very small swollen nodes in my neck also. He asked for getting a PET done. He said it is very important to make sure about the stage of the disease. He is hopeful. 

    So let's see!!! for now praying! :-) 

     

     
    Jaz,
    Regarding your last

     

    Jaz,

    Regarding your last line: Me too !

    Be aware that even in stage IV, your disease is almost always (>90% ) put into full remission. When I awaited my bone marrow biopsy six years ago, I asked the doc what a postivie result would mean, and he said,

    "Not too much. The treatment remains identical. Survival chances would reduce slightly, but not a lot."

    max

  • Jazmin2
    Jazmin2 Member Posts: 18

     
    Jaz,
    Regarding your last

     

    Jaz,

    Regarding your last line: Me too !

    Be aware that even in stage IV, your disease is almost always (>90% ) put into full remission. When I awaited my bone marrow biopsy six years ago, I asked the doc what a postivie result would mean, and he said,

    "Not too much. The treatment remains identical. Survival chances would reduce slightly, but not a lot."

    max

    Good answer from your doctor.

    I am not afraid of death. I know having cancer or not does not mean that One dies or not. I just dont like to see people around me suffer. 

  • Jazmin2 said:

    Good answer from your doctor.

    I am not afraid of death. I know having cancer or not does not mean that One dies or not. I just dont like to see people around me suffer. 

    Hi Jazmin,
    I just joined this

    Hi Jazmin,

    I just joined this forum at someone's advice since I'm looking for help as the carer for someone who's had a rarer NHL but your post is the first I came to so I thought I'd offer some random thoughts and background. I've read a few hundred 'cancer diaries' over the past 18 months or so and learned early on that after the shock settles, information is so important in coming to terms with where you are and where you (might) be headed. I'm not a doctor and opinions below are based on a lot of research and experience, only.

    My wife was diagnosed with a rare form of NHL in March of 2014 after being ill for 2-3 months. She completed very severe chemo in the fall of 2014 and has been in remission since November, with a couple of scares along the way, including a new one this week. It's been a very rough path and there's so much information and emotion to process that a single post here could never cover it. Some key points though, that I'd now tell anyone in your position or similar:

    Depending on your insurance coverage, get to a major cancer hospital. Don't let this go to a provincial hospital with a less experienced oncologist. The difference in treatment approaches between smaller regional hospitals and major centers can be very significant and important. Your insurance company will favor certain hospitals in your state based on complex metrics but these basically boil down to survival rate. This is especially true if your diagnosis leads to the possible treatment option of a stem-cell transplant. There aren't too many hospitals that perform this process but you should look for an experienced oncologist at one of those centers from the beginning so the transition is smoother when you're less well equipped to make it. We bounced around several different hospitals in 3 states before we found what we're now confident is a really smart, very experienced and honest oncologist we can communicate with. Having that is important. So, if you live close to a major cancer hospital, good. If you're somewhere more remote, seriously consider a second opinion at such a hospital with a researched/experienced onc. Diagnosis with rarer forms of NHL (especially) is a minefield and not uncommonly mistaken.

    PET scan is essential in staging diagnosis (CT can't stage nor realistically detail) especially with NHL cancers. If your doctor doesn't align with this then find a new one ASAP. I didn't read the whole thread/replies so you might have resolved this already, but mentioning just in case. Our current onc was shocked that the first onc didn't consider a PET essential pre-treatment and we never had one, nor knew better. Run a mile from any onc who doesn't know this with NHL.

    For most NHL bone marrow biopsy should also be done ASAP as part of staging. Discuss this in detail with your onc if it isn't raised. Also note, staging for NHL isn't so formal as it is with some other cancers, like lung cancer. You can hear terrible things like 'STAGE FOUR' and see a tombstone but it's not the same concept, exactly, for NHL. Staging talks about spread above/below the diaphragm and impact on other organs. Don't assume a higher number here is grave news. People walk away from later stage cancers or live a long time with worth-living lives.

    Don't rush into treatment. Get a second and even third opinion on diagnosis as well as treatment plan. Obviously, you don't want to dawdle but this is time well spent. Remember the choice on treatment is yours - you don't have to do anything the doctor tells you to do. Once you get all the information on diagnosis, treatment plans, consequences and chances of surviving 5 yrs+, take a little time to absorb it. Be sure you want to start on the very hard treatment options, that the chances of it working, based on medical advice you trust, are worth the struggle. This is a personal opinion, of course, but I hate the idea of 'cancer is a battle'; it implies if you lose it's because you just didn't fight hard or smart enough. Treatment isn't necessarily the right way to go for everyone.

    Find a doctor who never puts your appointments on the clock - if you walk in with 101 questions, he or she needs to be willing and able to cover them so you walk out with knowledge in place of fear. Terrible sickness and death is obviously frightening but nothing on what your imagination will do to you. It's easier to face the challenges this will throw at you with as much knowledge as you can collect.

    Be careful what you read online, especially in terms of survival data for NHL. It's a difficult disease to beat, certainly. It's also probably going to kill you one day, or be partially responsible. However, with each day that passes now, your statistical chances of being here in 5, 10 and 15 and beyond years goes up. Also, your quality of life for that time increases as treatments are refined. A lot of the mainstream data on NHL survival rates is very skewed. Many of the studies are focussed on older patient groups and don't sort mortality rates or causes, i.e. where an older patient dies due to something related to NHL, that is recorded as a NHL death, however the fact that they were diagnosed at 75 and died at 80 is not statistically sorted as a differential from someone diagnoses as young as you. So, if you choose to research data look for medical journal documents where the data is more cleanly profiled. Can be heavy reading but it was somewhat reassuring when we found some context to the numbers.

    Chemotherapy is not the horror movie experience it's been portrayed as in movies and TV over the past few decades. Of course, it's very rough, especially for NHL where many of the more severe chemo regimens are used, but it's not so terrible. The medications for controlling nausea and vomitting are much more effective these days. Talk to the doctors up front on this - get the options and understand that there are lots. If the hospital favored drug (often Zofran) doesn't work so well for you, demand Phenergan or one of the alternatives. Don't be shy about saying 'this isn't working - I need something else'.

    Even so, it will knock you down very hard. Often the treatment days are very uneventful. The second day can actually feel quite good. Days 3-7 can be really hard. The exhaustion is very dramatic, for most. The hair loss very traumatic for some. Some again go through this with some surprise at how it doesn't feel anything like as hard as expected. There's no way to know but again, the worst is something you can survive.

    Recognize that chemo is almost killing you in order to save you. Especially with NHL chemotherapy, the bone marrow and immune system are wiped out. It can take two years afterward before you even start to feel like your getting back to your own self, pre-cancer. It can take significantly longer than that to get back to 99% of who you were before but 99% of people who get through, do eventually. You can expect all kinds of post-chemo symptoms, including a foggy brain, neuropathy, limb and nerve pain, stomach issues. We're only 1 year past the last chemo session and are still waiting for lots of these symptoms to list, however my wife's immunology dr. insists he sees hundreds of chemo patients go through this and expect to bounce back too soon. However, he also insists that 99% of people do bounce back. All these unpleasant or downright horrible side-effects are the price of surviving NHL, he would say.

    Have an advocate with you all the time, if you can. Whether a spouse or sibling or friend, take someone with you to all appointments and treatments. They can record conversations, take notes, hold your hand. Later in chemo, if you have to go that route, you may wel find your memory becomes cloudy and big questions get lost. If the exhaustion hits hard, you'll sleep a great deal in the weeks between chemo sessions so having someone (or several people) around to help keep live moving is really important. Someone with you can help carry that load for you so you can focus on getting through.

    Above all, I'd try to remember this, and this is the part I struggle with most as someone taking care of someone further down a road you're just embarking on. We're all born with a death sentence - there's no way out of that. You might only have weeks or months or you might have another 40 years. A bus might squish you the day you learn you're in remission. The bottom line is LIVE. Even through chemo or whatever treatment you may go with, will likely be hard, do the things that matter most to you now. Don't take time for granted. Don't take a diagnosis of cancer as some revelation that you're going to die - you already were and never knew when nor how. One of the possible upsides of this diagnosis, if you get it, and there can be a surprising number, is how much you can value life going forward.

    Anyway, end of midnight ramble. I hope you get good news on diagnosis and in testing you find out one of the (many) other causes of swollen lymph nodes is your foe. If not, I hope some of the info/thoughts above help in some way.

    S.

     

  • Jazmin2
    Jazmin2 Member Posts: 18

    Hi Jazmin,
    I just joined this

    Hi Jazmin,

    I just joined this forum at someone's advice since I'm looking for help as the carer for someone who's had a rarer NHL but your post is the first I came to so I thought I'd offer some random thoughts and background. I've read a few hundred 'cancer diaries' over the past 18 months or so and learned early on that after the shock settles, information is so important in coming to terms with where you are and where you (might) be headed. I'm not a doctor and opinions below are based on a lot of research and experience, only.

    My wife was diagnosed with a rare form of NHL in March of 2014 after being ill for 2-3 months. She completed very severe chemo in the fall of 2014 and has been in remission since November, with a couple of scares along the way, including a new one this week. It's been a very rough path and there's so much information and emotion to process that a single post here could never cover it. Some key points though, that I'd now tell anyone in your position or similar:

    Depending on your insurance coverage, get to a major cancer hospital. Don't let this go to a provincial hospital with a less experienced oncologist. The difference in treatment approaches between smaller regional hospitals and major centers can be very significant and important. Your insurance company will favor certain hospitals in your state based on complex metrics but these basically boil down to survival rate. This is especially true if your diagnosis leads to the possible treatment option of a stem-cell transplant. There aren't too many hospitals that perform this process but you should look for an experienced oncologist at one of those centers from the beginning so the transition is smoother when you're less well equipped to make it. We bounced around several different hospitals in 3 states before we found what we're now confident is a really smart, very experienced and honest oncologist we can communicate with. Having that is important. So, if you live close to a major cancer hospital, good. If you're somewhere more remote, seriously consider a second opinion at such a hospital with a researched/experienced onc. Diagnosis with rarer forms of NHL (especially) is a minefield and not uncommonly mistaken.

    PET scan is essential in staging diagnosis (CT can't stage nor realistically detail) especially with NHL cancers. If your doctor doesn't align with this then find a new one ASAP. I didn't read the whole thread/replies so you might have resolved this already, but mentioning just in case. Our current onc was shocked that the first onc didn't consider a PET essential pre-treatment and we never had one, nor knew better. Run a mile from any onc who doesn't know this with NHL.

    For most NHL bone marrow biopsy should also be done ASAP as part of staging. Discuss this in detail with your onc if it isn't raised. Also note, staging for NHL isn't so formal as it is with some other cancers, like lung cancer. You can hear terrible things like 'STAGE FOUR' and see a tombstone but it's not the same concept, exactly, for NHL. Staging talks about spread above/below the diaphragm and impact on other organs. Don't assume a higher number here is grave news. People walk away from later stage cancers or live a long time with worth-living lives.

    Don't rush into treatment. Get a second and even third opinion on diagnosis as well as treatment plan. Obviously, you don't want to dawdle but this is time well spent. Remember the choice on treatment is yours - you don't have to do anything the doctor tells you to do. Once you get all the information on diagnosis, treatment plans, consequences and chances of surviving 5 yrs+, take a little time to absorb it. Be sure you want to start on the very hard treatment options, that the chances of it working, based on medical advice you trust, are worth the struggle. This is a personal opinion, of course, but I hate the idea of 'cancer is a battle'; it implies if you lose it's because you just didn't fight hard or smart enough. Treatment isn't necessarily the right way to go for everyone.

    Find a doctor who never puts your appointments on the clock - if you walk in with 101 questions, he or she needs to be willing and able to cover them so you walk out with knowledge in place of fear. Terrible sickness and death is obviously frightening but nothing on what your imagination will do to you. It's easier to face the challenges this will throw at you with as much knowledge as you can collect.

    Be careful what you read online, especially in terms of survival data for NHL. It's a difficult disease to beat, certainly. It's also probably going to kill you one day, or be partially responsible. However, with each day that passes now, your statistical chances of being here in 5, 10 and 15 and beyond years goes up. Also, your quality of life for that time increases as treatments are refined. A lot of the mainstream data on NHL survival rates is very skewed. Many of the studies are focussed on older patient groups and don't sort mortality rates or causes, i.e. where an older patient dies due to something related to NHL, that is recorded as a NHL death, however the fact that they were diagnosed at 75 and died at 80 is not statistically sorted as a differential from someone diagnoses as young as you. So, if you choose to research data look for medical journal documents where the data is more cleanly profiled. Can be heavy reading but it was somewhat reassuring when we found some context to the numbers.

    Chemotherapy is not the horror movie experience it's been portrayed as in movies and TV over the past few decades. Of course, it's very rough, especially for NHL where many of the more severe chemo regimens are used, but it's not so terrible. The medications for controlling nausea and vomitting are much more effective these days. Talk to the doctors up front on this - get the options and understand that there are lots. If the hospital favored drug (often Zofran) doesn't work so well for you, demand Phenergan or one of the alternatives. Don't be shy about saying 'this isn't working - I need something else'.

    Even so, it will knock you down very hard. Often the treatment days are very uneventful. The second day can actually feel quite good. Days 3-7 can be really hard. The exhaustion is very dramatic, for most. The hair loss very traumatic for some. Some again go through this with some surprise at how it doesn't feel anything like as hard as expected. There's no way to know but again, the worst is something you can survive.

    Recognize that chemo is almost killing you in order to save you. Especially with NHL chemotherapy, the bone marrow and immune system are wiped out. It can take two years afterward before you even start to feel like your getting back to your own self, pre-cancer. It can take significantly longer than that to get back to 99% of who you were before but 99% of people who get through, do eventually. You can expect all kinds of post-chemo symptoms, including a foggy brain, neuropathy, limb and nerve pain, stomach issues. We're only 1 year past the last chemo session and are still waiting for lots of these symptoms to list, however my wife's immunology dr. insists he sees hundreds of chemo patients go through this and expect to bounce back too soon. However, he also insists that 99% of people do bounce back. All these unpleasant or downright horrible side-effects are the price of surviving NHL, he would say.

    Have an advocate with you all the time, if you can. Whether a spouse or sibling or friend, take someone with you to all appointments and treatments. They can record conversations, take notes, hold your hand. Later in chemo, if you have to go that route, you may wel find your memory becomes cloudy and big questions get lost. If the exhaustion hits hard, you'll sleep a great deal in the weeks between chemo sessions so having someone (or several people) around to help keep live moving is really important. Someone with you can help carry that load for you so you can focus on getting through.

    Above all, I'd try to remember this, and this is the part I struggle with most as someone taking care of someone further down a road you're just embarking on. We're all born with a death sentence - there's no way out of that. You might only have weeks or months or you might have another 40 years. A bus might squish you the day you learn you're in remission. The bottom line is LIVE. Even through chemo or whatever treatment you may go with, will likely be hard, do the things that matter most to you now. Don't take time for granted. Don't take a diagnosis of cancer as some revelation that you're going to die - you already were and never knew when nor how. One of the possible upsides of this diagnosis, if you get it, and there can be a surprising number, is how much you can value life going forward.

    Anyway, end of midnight ramble. I hope you get good news on diagnosis and in testing you find out one of the (many) other causes of swollen lymph nodes is your foe. If not, I hope some of the info/thoughts above help in some way.

    S.

     

    Very confused...

    I eventually got PET done and shows few (3) more hypermetabolic lymph nodes. But as per the doctor NLPHL is a very slow growing and he thinks chemo and radiation has lots of side effects. he said that he will keep an eye and blood test will be done every three months. 

     

    Knowing that I have cancer and i should wait and watch makes me a little nervous. 

     

    The only thing I hate about all this is that in the end it is my decision......WHY??? I am going to a top specialist, I should not be making a decion my doctor should. Telling me that it is my call is CRAZY!!!! I am as confused as anyone can get. Now everyone suggests that I should another opinion.