Just diagnosed with NLPHL

Hi everyone, after years of something being wrong with me(I'm 45) and told its all in my head they finally figured out I have this disease. Had my pet scan yesterday the bone marrow biopsy is today second opinion is next week and treatment after that. Did anyone have sleeping trouble after diagnosis? I have barely slept in ten days.
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Comments

  • coachmike
    coachmike Member Posts: 155
    aaron...i am 34 yr old and
    aaron...i am 34 yr old and was diagnosed with difuse large b cell lymphoma. I had a lot of anxiety from the diagnosis and was prescribed ambien to assist me in sleeping because I had lots of trouble trying to sleep too.
    I pray that your treatment will cure your disease.
  • allmost60
    allmost60 Member Posts: 3,178
    Yes...
    Hi Aaron...Welcome to the group,
    Actually, the first month after my diagnosis I was on the computer until wee hours of the morning trying to learn everything I could about my cancer, so there wasn't much sleeping. I was diagnosed with Follicular Non Hodgkins Lymphoma...stage 3, no bone marrow involvement. I remember sleeping in bits and pieces of time. My anxiety was so high that even when I did fall asleep from pure exhaustion, it would only last a short time. In time you will figure out a routine and sleep will be easier. Good luck on your BMB today. Try to take it one day at a time, but I know how hard that is to do, especially in the early period after diagnosis. If you are not already taking something for anxiety, you might consider talking with your doctor. No need to be more stressed out than necessary. You take care and please share back how things are going with you. Best wishes...Sue
    (Follicular NHL-stage3-grade2-typeA-Dx 6/10-age 61-considered stable)
  • COBRA666
    COBRA666 Member Posts: 2,401
    What is Sleeping.
    Aaron,
    Yes and I was the one up answering Sue all night because I could not sleep either. It will takes it toll on you thats for sure. It will take a while to figure out a routine as Sue says. You have been hit with some startling news. It really has not sunk in yet. Just remember it is treatable and new strides and treatments are being met every day. I had a Follicular NHL disgnosis. Now in remission. I was grade 1 and stage 4 which means bone involvement. John
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

    What is Sleeping.
    Aaron,
    Yes and I was the one up answering Sue all night because I could not sleep either. It will takes it toll on you thats for sure. It will take a while to figure out a routine as Sue says. You have been hit with some startling news. It really has not sunk in yet. Just remember it is treatable and new strides and treatments are being met every day. I had a Follicular NHL disgnosis. Now in remission. I was grade 1 and stage 4 which means bone involvement. John

    Picture...
    Hey John..."LOVE" this picture of Katie...her long hair is so pretty! I know that sweet smile of hers just melts gramma and grandpa's heart...how could it not! Sue
  • Aaron
    Aaron Member Posts: 237
    allmost60 said:

    Picture...
    Hey John..."LOVE" this picture of Katie...her long hair is so pretty! I know that sweet smile of hers just melts gramma and grandpa's heart...how could it not! Sue

    Thanks
    I appreciate all the comments, I'm doing my best to keep my chin up. Perhaps after the staging is complete no matter the result the anxiety will let up a bit. I'll keep you all posted, this LPHL is an odd little variant.
  • anliperez915
    anliperez915 Member Posts: 770
    Hi Aaron
    Hi Aaron,
    Just wanted to welcome you to the group! Hope your BMB wasn't that bad and you get your results soon. My dx is different than yours, mine is Splenic Marginal Zone NHL stage IV, with tumors in spleen, liver, and bone marrow involvement. I was diagnosed in July of last year and I remember that I couldn't sleep well the first couple of months, just thinking and thinking. I think we all know what you're going through! Hang in there and please let us know what the Dr's said. Take care

    Sincerely,
    Liz
  • ta8631
    ta8631 Member Posts: 40
    I literally havent slept n
    I literally havent slept n months :( stress n side effects from the chemo haven't helped. Good luck n just look forward to the long life u have to live :)
  • Aaron
    Aaron Member Posts: 237
    ta8631 said:

    I literally havent slept n
    I literally havent slept n months :( stress n side effects from the chemo haven't helped. Good luck n just look forward to the long life u have to live :)

    Sleep
    The meds they gave me for the BMB gave me a bit of a rest this afternoon. Right before she stuck me with that huge needle my doctor told me there was no organ involvement per thePET scan whew! I really thought there would be. So if I can dodge the bone marrow bullet it looks like 3a and then it's off to treatment. Hang in there Ta I'm sure we'll be swapping chemo stories in no time.
  • jimwins
    jimwins Member Posts: 2,107
    Welcome
    Hi Aaron and welcome to the group. Anxiety and resultant sleep difficulties
    are very common with this early on. I was presribed Ativan for anxiety and it really helped. I also got ambien for use during treatment because the prednisone wouldn't let
    me sleep. Even with a strong dose of ambien and ativan, I could only sleep
    about 3 hours at a stretch during my treatments.

    Again welcome and you'll find wonderful and supportive folks here.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • CHRIS M001
    CHRIS M001 Member Posts: 23
    Aaron said:

    Sleep
    The meds they gave me for the BMB gave me a bit of a rest this afternoon. Right before she stuck me with that huge needle my doctor told me there was no organ involvement per thePET scan whew! I really thought there would be. So if I can dodge the bone marrow bullet it looks like 3a and then it's off to treatment. Hang in there Ta I'm sure we'll be swapping chemo stories in no time.

    Hang in there Aaron. It is
    Hang in there Aaron. It is very normal not to sleep and be very scared. I am 41 yrs old and was diagnosed with Anaplastic Large Cell Lymphoma (t-cell) last October. I have had 3 PET scans 4 CT scans Heart scans Bonemarrow biopsy's and all the good stuff we get to go through. My chemo was from Nov 22nd to March 8th. I just found out last Thursday that I am in remission. After I was diagnosed I was very depressed and coulnd not believe this was happening to me. The more people I talked to about my cancer the more I realized how many people have cancer now or have had it in the past. Boards like this and local support groups are a big help. I am fairly new to this board but what you will find out is everyone here truely cares about each other. Everyone who has had cancer will always have that special bond. Dont be afraid to ask your doctor for Xanax or Ativan (for sleeping and anxiety). Keep us up to date on how things are going. You can do this.
  • miss maggie
    miss maggie Member Posts: 929
    Oh yes,
    Dear Aaron,

    When if was first dx in Sept 2009, not only could I not sleep, the depression was unbearable.. I would lie in bed, mentally exhausted. Eventully when I learned more
    about my dx, and the prognosis, a cloud was lifted from my heart.

    Give it time until you find out more. I will pray for you. Love Maggie
  • Aaron
    Aaron Member Posts: 237

    Oh yes,
    Dear Aaron,

    When if was first dx in Sept 2009, not only could I not sleep, the depression was unbearable.. I would lie in bed, mentally exhausted. Eventully when I learned more
    about my dx, and the prognosis, a cloud was lifted from my heart.

    Give it time until you find out more. I will pray for you. Love Maggie

    Sleep
    I actually got my first good sleep last night. It was probably a mix of the drugs for the BMB and the relief of the PETscan showing no organ involvement. Hopefully restful sleep will continue. How is everyone feeling about the supreme court ruling? I think it protects folks like ourselves that need follow up monitoring and or care. I don't want to stir up a hornets nest of debate! I'm just curious what y'all think.
  • allmost60
    allmost60 Member Posts: 3,178
    Aaron said:

    Sleep
    I actually got my first good sleep last night. It was probably a mix of the drugs for the BMB and the relief of the PETscan showing no organ involvement. Hopefully restful sleep will continue. How is everyone feeling about the supreme court ruling? I think it protects folks like ourselves that need follow up monitoring and or care. I don't want to stir up a hornets nest of debate! I'm just curious what y'all think.

    Too soon to comment...
    Hi Aaron,
    So glad you got a decent nights sleep and I'm very happy your scan showed no organ involvement. My BMB was very painful...sounds like yours went pretty good. You will find as each test gets completed, your stress will go down and sleep will come easier. Thinking good positive thoughts for you. Hang in there...Sue (FNHL-2-3A-6/10)
    No comment on the supreme court ruling.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Aaron

    Aaron,

    You are correct, NLPHL is uncommon: HL is much less common than NHL. Among HL lymphomas there are five main variants, and NLPHL constitues few than 5% of those cases. Among all new diagnoses of lymphoma, NLPHL constitues around 1%. Non-Hodgkins Lymphoma (NHL) includes about 25 variants.

    From what you mentioned in your personal information, it sounds like yo are most likely Stage 1. Sometmes early-stage is treated only with radiation, sometimes some chemo may be added.

    Ta 8631 at this site and I were both Stage 3 at diagnosis and we both did, or are on, chemo. I did a long series of a combination therapy (five drugs) know as "r-abvd." Ta is currently on chemo, and receives "r-chop." Both are commonly used for late-stage NLPHL.

    I have been in complete remission, and am at my 3 year anniversary. Ta is just getting started.

    We are all here with a good bit of information for you. I tell people I "learned medicine" the hard way: By being sick a lot !

    May your treatment be quick and easy,

    max

    .
  • Aaron
    Aaron Member Posts: 237

    Aaron

    Aaron,

    You are correct, NLPHL is uncommon: HL is much less common than NHL. Among HL lymphomas there are five main variants, and NLPHL constitues few than 5% of those cases. Among all new diagnoses of lymphoma, NLPHL constitues around 1%. Non-Hodgkins Lymphoma (NHL) includes about 25 variants.

    From what you mentioned in your personal information, it sounds like yo are most likely Stage 1. Sometmes early-stage is treated only with radiation, sometimes some chemo may be added.

    Ta 8631 at this site and I were both Stage 3 at diagnosis and we both did, or are on, chemo. I did a long series of a combination therapy (five drugs) know as "r-abvd." Ta is currently on chemo, and receives "r-chop." Both are commonly used for late-stage NLPHL.

    I have been in complete remission, and am at my 3 year anniversary. Ta is just getting started.

    We are all here with a good bit of information for you. I tell people I "learned medicine" the hard way: By being sick a lot !

    May your treatment be quick and easy,

    max

    .

    Max
    Thanks max, I'm certainly stage 3 because it's in the armpit and groin on opposite sides of the diaphragm. It looks like I will also receive 6 cycles of r-abvd . Found out yesterday that there is no organ involvement now I'm waiting on BMB results. I'm so happy your cancer free after your treatment and I plan to join you soon at that great place! If you feel inclined perhaps you could tell me some of your experiances while on treatment. I've got a 5 year old to chase around and care for during all this, I sure hope Ive got some energy to do it ;). Thanks for the kind words and insight max. Aaron
  • ta8631
    ta8631 Member Posts: 40
    Aaron said:

    Max
    Thanks max, I'm certainly stage 3 because it's in the armpit and groin on opposite sides of the diaphragm. It looks like I will also receive 6 cycles of r-abvd . Found out yesterday that there is no organ involvement now I'm waiting on BMB results. I'm so happy your cancer free after your treatment and I plan to join you soon at that great place! If you feel inclined perhaps you could tell me some of your experiances while on treatment. I've got a 5 year old to chase around and care for during all this, I sure hope Ive got some energy to do it ;). Thanks for the kind words and insight max. Aaron

    Aaron
    The 5 year old wont slow down for you :) Both of my kids have been the best energy booster ever. When i am tired just watching them play helps boost my energy because i am determined to get in there with them... i have been pretty lucky and havent had to much fatigue so they haven't seemed to notice anything yet. Not sure how i am gonna explain to my son whats going on when i start losing my hair but hopefully neither him or my daughter will remember this by the time it is over.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Aaron said:

    Max
    Thanks max, I'm certainly stage 3 because it's in the armpit and groin on opposite sides of the diaphragm. It looks like I will also receive 6 cycles of r-abvd . Found out yesterday that there is no organ involvement now I'm waiting on BMB results. I'm so happy your cancer free after your treatment and I plan to join you soon at that great place! If you feel inclined perhaps you could tell me some of your experiances while on treatment. I've got a 5 year old to chase around and care for during all this, I sure hope Ive got some energy to do it ;). Thanks for the kind words and insight max. Aaron

    r-abvd

    Aaron,

    Yes, if you have involvement in the axilary (armpit) and groin area, to would be Stage 3. I had no organ or bone marrow involvement, but had large nodes across the chest and axilary region. I never had a lymphoma symptom (except extreme fatigue), and never felt a node anywhere. My axilary biopsy was about the size of a golf ball, the surgeon told me later.

    The bone marrow test gets mixed reviews: Some say it is agonizing, others say it little affected them. As I recall, it was painful at the time, but I do not recall any pain later, even the same day. It is a somewhat "primitive" technique, however.

    I did 12 cycles of r-abvd, or a six month treatment. You are a bit younger (I began at 53), which will help minimize side-effects. Generally, the fewer treatments, the fewer the side-effects, or the weaker they will be.

    I had an assortment of fairly serious side-effects. Your experience will be DIFFERENT, and most likely EASIER. In general, my first one or two cycles were not too severe, although I did feel like I had the flu immediately, and this lasted for seven months.

    Your hair will fall out after about three weeks. I lost even my eyelashes and eyebrows. But, it will rerturn within a month or so after treatment ends.

    I got fairly severe neuropathy (numbness) in my hands and feet from the Vinblastine. I still have some of this numbness today. Some folks get it severely, some get none; most are somewhere in-between.

    I had lung toxicity from the bleomycine, and still suffer from shortness of breath, but this may be because I had suffered severe chest injuries years earlier in an accident.
    Around 90% of users suffer no ill effects from bleomycin.

    I lost all sense of taste after about two months of treatment, but later regained normal taste.

    I would caution againt fatigue. By the end of treatment, I was sleeping around 17 hours per day, and had lost about 15% of my beginning weight.

    Do get an IV PORT ! This is something I highly recommend. Also, tell the surgeon that you want an IV port that is "CT Contrast compatable."

    I also recommend to everyone the very hig-quality site "chemocare.com."

    May your road be easy. For patients under 40, NLPHL has a 90%-plus complete remission rate at five years. But, do not fixate on "numbers." Just remember that it is a very treatable disease.

    max
  • Aaron
    Aaron Member Posts: 237

    r-abvd

    Aaron,

    Yes, if you have involvement in the axilary (armpit) and groin area, to would be Stage 3. I had no organ or bone marrow involvement, but had large nodes across the chest and axilary region. I never had a lymphoma symptom (except extreme fatigue), and never felt a node anywhere. My axilary biopsy was about the size of a golf ball, the surgeon told me later.

    The bone marrow test gets mixed reviews: Some say it is agonizing, others say it little affected them. As I recall, it was painful at the time, but I do not recall any pain later, even the same day. It is a somewhat "primitive" technique, however.

    I did 12 cycles of r-abvd, or a six month treatment. You are a bit younger (I began at 53), which will help minimize side-effects. Generally, the fewer treatments, the fewer the side-effects, or the weaker they will be.

    I had an assortment of fairly serious side-effects. Your experience will be DIFFERENT, and most likely EASIER. In general, my first one or two cycles were not too severe, although I did feel like I had the flu immediately, and this lasted for seven months.

    Your hair will fall out after about three weeks. I lost even my eyelashes and eyebrows. But, it will rerturn within a month or so after treatment ends.

    I got fairly severe neuropathy (numbness) in my hands and feet from the Vinblastine. I still have some of this numbness today. Some folks get it severely, some get none; most are somewhere in-between.

    I had lung toxicity from the bleomycine, and still suffer from shortness of breath, but this may be because I had suffered severe chest injuries years earlier in an accident.
    Around 90% of users suffer no ill effects from bleomycin.

    I lost all sense of taste after about two months of treatment, but later regained normal taste.

    I would caution againt fatigue. By the end of treatment, I was sleeping around 17 hours per day, and had lost about 15% of my beginning weight.

    Do get an IV PORT ! This is something I highly recommend. Also, tell the surgeon that you want an IV port that is "CT Contrast compatable."

    I also recommend to everyone the very hig-quality site "chemocare.com."

    May your road be easy. For patients under 40, NLPHL has a 90%-plus complete remission rate at five years. But, do not fixate on "numbers." Just remember that it is a very treatable disease.

    max

    This thing of ours ;)
    It's amazing how they find this stuff, I had a biopsy on my axillary node 7 months ago and it came back benign. Like you on an unrelated test(ct scan) they saw more nodes and the pathologist retested the sample along with folks from the university of washington and came up with the new diagnosis. I'm going to start a new thread about this but did you go through chemo with pets in your house? Ta I suspect my daughter will put me in the same position your children have put you, we have to keep moving cause our little ones leave us no choice. Max, are there others like us on this board with the same subset? I'd be very curious to hear other diagnosis stories. Frankly id bet the odds of finding this ( thing of ours ) before stage 3 is remote.
  • Aaron
    Aaron Member Posts: 237

    r-abvd

    Aaron,

    Yes, if you have involvement in the axilary (armpit) and groin area, to would be Stage 3. I had no organ or bone marrow involvement, but had large nodes across the chest and axilary region. I never had a lymphoma symptom (except extreme fatigue), and never felt a node anywhere. My axilary biopsy was about the size of a golf ball, the surgeon told me later.

    The bone marrow test gets mixed reviews: Some say it is agonizing, others say it little affected them. As I recall, it was painful at the time, but I do not recall any pain later, even the same day. It is a somewhat "primitive" technique, however.

    I did 12 cycles of r-abvd, or a six month treatment. You are a bit younger (I began at 53), which will help minimize side-effects. Generally, the fewer treatments, the fewer the side-effects, or the weaker they will be.

    I had an assortment of fairly serious side-effects. Your experience will be DIFFERENT, and most likely EASIER. In general, my first one or two cycles were not too severe, although I did feel like I had the flu immediately, and this lasted for seven months.

    Your hair will fall out after about three weeks. I lost even my eyelashes and eyebrows. But, it will rerturn within a month or so after treatment ends.

    I got fairly severe neuropathy (numbness) in my hands and feet from the Vinblastine. I still have some of this numbness today. Some folks get it severely, some get none; most are somewhere in-between.

    I had lung toxicity from the bleomycine, and still suffer from shortness of breath, but this may be because I had suffered severe chest injuries years earlier in an accident.
    Around 90% of users suffer no ill effects from bleomycin.

    I lost all sense of taste after about two months of treatment, but later regained normal taste.

    I would caution againt fatigue. By the end of treatment, I was sleeping around 17 hours per day, and had lost about 15% of my beginning weight.

    Do get an IV PORT ! This is something I highly recommend. Also, tell the surgeon that you want an IV port that is "CT Contrast compatable."

    I also recommend to everyone the very hig-quality site "chemocare.com."

    May your road be easy. For patients under 40, NLPHL has a 90%-plus complete remission rate at five years. But, do not fixate on "numbers." Just remember that it is a very treatable disease.

    max

    This thing of ours ;)
    It's amazing how they find this stuff, I had a biopsy on my axillary node 7 months ago and it came back benign. Like you on an unrelated test(ct scan) they saw more nodes and the pathologist retested the sample along with folks from the university of washington and came up with the new diagnosis. I'm going to start a new thread about this but did you go through chemo with pets in your house? Ta I suspect my daughter will put me in the same position your children have put you, we have to keep moving cause our little ones leave us no choice. Max, are there others like us on this board with the same subset? I'd be very curious to hear other diagnosis stories. Frankly id bet the odds of finding this ( thing of ours ) before stage 3 is remote.
  • Aaron
    Aaron Member Posts: 237
    Aaron said:

    This thing of ours ;)
    It's amazing how they find this stuff, I had a biopsy on my axillary node 7 months ago and it came back benign. Like you on an unrelated test(ct scan) they saw more nodes and the pathologist retested the sample along with folks from the university of washington and came up with the new diagnosis. I'm going to start a new thread about this but did you go through chemo with pets in your house? Ta I suspect my daughter will put me in the same position your children have put you, we have to keep moving cause our little ones leave us no choice. Max, are there others like us on this board with the same subset? I'd be very curious to hear other diagnosis stories. Frankly id bet the odds of finding this ( thing of ours ) before stage 3 is remote.

    Thans everyone
    I just want to say THANK YOU to all of you who responded to this thread with all the kind thoughts and great info,y'all are great. You have all helped to make this week and dx much more bearable. Aaron