FNHL strategy to deal with symptoms.

Unknown
Unknown
edited December 2016 in Lymphoma (Hodgkin and Non-Hodgkin) #1
After being tired and fatigued for 3 years I finally elected to have a periaortal lymph node extracted for biopsy. DX was follicular lymphoma. It also showed up in my bone marrow which put me at stage 4. Since I had no large tumors in my PET scan, we elected Rituxan mono therapy as a starter and to "save the big guns for when I really need them". I had a severe blackout due to low BP in my 1st infusion but since then it has been uneventful. I completed 8 weeks of infusions and then went on maintenance. I have my third maintenance infusion next week. I went to MD Anderson for a second opinion found that I had a complete response. There are several suspicious spots so I need another PET in September.

Here is my problem: I don't feel better. I have severe leg pains and fatigue. Both shoulders hurt with no apparent injury. For the first time in my life I am having problems sexually. Does anyone else have theses symptoms?

I am not scared and think I handle it well. I do not feel "brave" or any of the other terms so often used to describe "survivors". I am mostly just pissed off. My career is gone, my sex life is gone and I have problems with my outdoor sports. If I could get rid of or lessen the pains and fatigue I would feel much better. Any stories of how you have dealt with similar symptoms?

I need to turn off self correction on this iPad!

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Symtoms
    GKH,
    I think we all have lingering after effects either from the Lymphoma or the Chemo. I do have the tiredness more than usual. My legs tire more easily than before. I have dry eyes which I never had before. The good news is Peppy still works.Wondering how old are you. Maybe age has something to do with it and maybe not. I am currently in remission from Follicular NHL. Also had stage 4 which was in the bone. John(FNHL-4-1A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Similar...
    Hi GKH,
    First off.."welcome to the group". I also have FNHL-stage3-grade2-typeA-Dx 6/10, and currently doing Rituxan maint. I'll be finished with the R in Feb. Fatigue, joint pain..(knees and left hip) and sore achey shoulders is something I deal with on a daily basis. I'm going to be 62 in September and have been married for 34 years, so as far as having a problem with my sex life...no, but we don't exactly tear up the sheets every night of the week either. :) My outdoor activities have changed dramatically since having chemo and being on the rituxan maint. My endurance is way down and must pace myself with everything I do...housework..yard work etc. I'm hoping once the Rituxan is finished in Feb that my energy will pick up. Do you take anything for anxiety? I take a low dose of alprazolam, which greatly helps me sleep better and cope with the daily fears and pain that come with having cancer. I take anacin for my aches and pains and use a heating pad and a Tens Unit for the shoulder pain. I'm sorry you are dealing with all these issues, but you are not alone...many of us feel the same as you. I sometimes get angry also because I just want to get back to my old energetic self and get this crap behind me. It bothers me when my Onc tells me this may be as good as it gets, and I need to accept the "new normal" and just go with it. Some days are better than others and as a rule I do accept things as they are, but that doesn't mean I have to "LIKE" it. I am grateful for many things, but also miss my old self. I hope you can find some relief...living with cancer is definetely a daily challenge. Don't know if I helped you much, but at least you know you are not alone. Others will add to this shortly...we all have our stories to share.
    Best wishes...Sue
  • Unknown
    Unknown
    #4
    COBRA666 said:

    Symtoms
    GKH,
    I think we all have lingering after effects either from the Lymphoma or the Chemo. I do have the tiredness more than usual. My legs tire more easily than before. I have dry eyes which I never had before. The good news is Peppy still works.Wondering how old are you. Maybe age has something to do with it and maybe not. I am currently in remission from Follicular NHL. Also had stage 4 which was in the bone. John(FNHL-4-1A-5/10)

    Symptoms
    I am early 60's. Curious about your status. My Doc said a "complete response" is not the same as remission. I took it to mean fnhl is always there. Thanks for the kind words. peppy still works but only every now and then. I tried a dozen raw oysters and was disappointed in their supposed effect. Only 6 of them worked! Just kidding.
  • Unknown
    Unknown
    #5
    allmost60 said:

    Similar...
    Hi GKH,
    First off.."welcome to the group". I also have FNHL-stage3-grade2-typeA-Dx 6/10, and currently doing Rituxan maint. I'll be finished with the R in Feb. Fatigue, joint pain..(knees and left hip) and sore achey shoulders is something I deal with on a daily basis. I'm going to be 62 in September and have been married for 34 years, so as far as having a problem with my sex life...no, but we don't exactly tear up the sheets every night of the week either. :) My outdoor activities have changed dramatically since having chemo and being on the rituxan maint. My endurance is way down and must pace myself with everything I do...housework..yard work etc. I'm hoping once the Rituxan is finished in Feb that my energy will pick up. Do you take anything for anxiety? I take a low dose of alprazolam, which greatly helps me sleep better and cope with the daily fears and pain that come with having cancer. I take anacin for my aches and pains and use a heating pad and a Tens Unit for the shoulder pain. I'm sorry you are dealing with all these issues, but you are not alone...many of us feel the same as you. I sometimes get angry also because I just want to get back to my old energetic self and get this crap behind me. It bothers me when my Onc tells me this may be as good as it gets, and I need to accept the "new normal" and just go with it. Some days are better than others and as a rule I do accept things as they are, but that doesn't mean I have to "LIKE" it. I am grateful for many things, but also miss my old self. I hope you can find some relief...living with cancer is definetely a daily challenge. Don't know if I helped you much, but at least you know you are not alone. Others will add to this shortly...we all have our stories to share.
    Best wishes...Sue

    Thanks Sue
    For the reply. I do take Cymbalta which helps with the muscle pain and calms me down. I generally accept my condition but do get puzzled by what he docs do. I had ALL the symptoms more than three years before being diagnosed and was told there was nothing wrong. Even the 3 year old ct scans were commented as a possible case of endolent lymphoma . Now I am told I may have had it as long as 5 years. But that's all past. Still I am a bit dubious of being told my symptoms are probably not related to the lymphoma while all other causes have been ruled out. If there is help for my symptoms I would like to get it.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #6
    unknown said:

    Symptoms
    I am early 60's. Curious about your status. My Doc said a "complete response" is not the same as remission. I took it to mean fnhl is always there. Thanks for the kind words. peppy still works but only every now and then. I tried a dozen raw oysters and was disappointed in their supposed effect. Only 6 of them worked! Just kidding.

    Hmmmm!!!!
    GKH,
    I have never heard the complete response before. I have heard other terms used. I have heard responding well to chemo.My doc says complete remission. Maybe they mean a complete response meaning the chemo is doing its job. One thing that does bother me and gets me to wondering is whenever I go for a port flush like yesteday my nurse always ask me how is my pain level today. I have never had any pain and its makes me wonder why they ask that. Are they expecting pain or what. It has me thinking all the way home.Anybody else ever been asked that? John
  • Aaron
    Aaron Member Posts: 237
    #7
    unknown said:

    Thanks Sue
    For the reply. I do take Cymbalta which helps with the muscle pain and calms me down. I generally accept my condition but do get puzzled by what he docs do. I had ALL the symptoms more than three years before being diagnosed and was told there was nothing wrong. Even the 3 year old ct scans were commented as a possible case of endolent lymphoma . Now I am told I may have had it as long as 5 years. But that's all past. Still I am a bit dubious of being told my symptoms are probably not related to the lymphoma while all other causes have been ruled out. If there is help for my symptoms I would like to get it.

    Indolent lymphoma
    I totally understand where your coming from. I have NLPHL wich I akin to what you have. I'm sure I've had it for 6 to 8 years having doctors tell me it's all in my head . I often wonder about the ambiguity of "fatigue" I'm sure its a very individual experiance for us all. I'm glad they finally got your dx right even though it's a real pita! I can sure relate I don't really feel that bad and Im starting 6 rounds of r-abvd in a week. That's the thing with indolent lymphomas, it tough to know where you stand with them( if that makes any sense ) but they must be dealt with nonetheless. Best of luck with he rituxan, I hope it does the trick... For all of us. Aaron
  • Unknown
    Unknown
    #8
    COBRA666 said:

    Hmmmm!!!!
    GKH,
    I have never heard the complete response before. I have heard other terms used. I have heard responding well to chemo.My doc says complete remission. Maybe they mean a complete response meaning the chemo is doing its job. One thing that does bother me and gets me to wondering is whenever I go for a port flush like yesteday my nurse always ask me how is my pain level today. I have never had any pain and its makes me wonder why they ask that. Are they expecting pain or what. It has me thinking all the way home.Anybody else ever been asked that? John

    Thanks John
    You confirm my suspicion that there is no one clear term to describe it. Good luck. Sounds like you are doing well!
  • Unknown
    Unknown
    #9
    Aaron said:

    Indolent lymphoma
    I totally understand where your coming from. I have NLPHL wich I akin to what you have. I'm sure I've had it for 6 to 8 years having doctors tell me it's all in my head . I often wonder about the ambiguity of "fatigue" I'm sure its a very individual experiance for us all. I'm glad they finally got your dx right even though it's a real pita! I can sure relate I don't really feel that bad and Im starting 6 rounds of r-abvd in a week. That's the thing with indolent lymphomas, it tough to know where you stand with them( if that makes any sense ) but they must be dealt with nonetheless. Best of luck with he rituxan, I hope it does the trick... For all of us. Aaron

    Indolent Lymphoma
    Aaron - thanks for your insight. Yes, the fatigue thing makes many Dr.s think you are either a nutcase or looking for a disability payment. In my case it was neither. I was simply fatigued. I was told to manage stress and I would be OK by more than one Dr. I believe, and my family tells me, I am as calm about all this as anyone could be. Its not stress. Its a physical ailment. I had spent the last 35 years in international sales and traveled a lot. One Dr. told me that I needed to change jobs.

    On the + side it is known that early detection does NOT help overall survival with this disease. So perhaps, as frustrating as it was, it saved me some years of treatment and let me work a few years longer. I am just the type of person who likes to deal with facts. I can deal with most anything if I feel I know whats going on.

    Best of luck!
  • Unknown
    Unknown
    #10
    Aaron said:

    Indolent lymphoma
    I totally understand where your coming from. I have NLPHL wich I akin to what you have. I'm sure I've had it for 6 to 8 years having doctors tell me it's all in my head . I often wonder about the ambiguity of "fatigue" I'm sure its a very individual experiance for us all. I'm glad they finally got your dx right even though it's a real pita! I can sure relate I don't really feel that bad and Im starting 6 rounds of r-abvd in a week. That's the thing with indolent lymphomas, it tough to know where you stand with them( if that makes any sense ) but they must be dealt with nonetheless. Best of luck with he rituxan, I hope it does the trick... For all of us. Aaron

    New Invention
    I am working on a new invention called the ambiguity resolver hoping it will help answer my questions. Just joking but wouldn't such a machine or computer program be a blessing?
  • anliperez915
    anliperez915 Member Posts: 770
    #11
    Hi GKH
    Just wanted to welcome you to the group. I like you have fatigue, pain and my sex life has gone down hill along with many other things lol! I was diagnosed a year ago with Splenic Marginal Zone NHL stage 4, tumors in spleen, liver and bone marrow involvement! I've only had Rituxan treatment in Feb and will start another round the 19th of this month. Don't really like the treatment, I had a rough time with it. Hope this time is better but still grateful that I've only had Rituxan than the harsher treatments. I really do feel what you are saying about being "pissed off" I had barely graduated with a Bachelors in Accounting, was planning on working and making the big bucks but didn't even get a chance to do anything! Had to get disabled because of the lack of insurance from my husbands job, I also have other illnesses that insurances will deny me for plus the cancer. I really really wish that I didn't have any of this crap (excuse my french) to deal with and that I would be healthy enough to work and make a good living. Please take care of yourself and just hang in there!

    Sincerely,
    Liz
  • Unknown
    Unknown
    #12
    anliperez915 said:

    Hi GKH
    Just wanted to welcome you to the group. I like you have fatigue, pain and my sex life has gone down hill along with many other things lol! I was diagnosed a year ago with Splenic Marginal Zone NHL stage 4, tumors in spleen, liver and bone marrow involvement! I've only had Rituxan treatment in Feb and will start another round the 19th of this month. Don't really like the treatment, I had a rough time with it. Hope this time is better but still grateful that I've only had Rituxan than the harsher treatments. I really do feel what you are saying about being "pissed off" I had barely graduated with a Bachelors in Accounting, was planning on working and making the big bucks but didn't even get a chance to do anything! Had to get disabled because of the lack of insurance from my husbands job, I also have other illnesses that insurances will deny me for plus the cancer. I really really wish that I didn't have any of this crap (excuse my french) to deal with and that I would be healthy enough to work and make a good living. Please take care of yourself and just hang in there!

    Sincerely,
    Liz

    Hi Liz
    sorry to hear of your misfortune but also happy you are doing well. Seems each of us is a bit different in our circumstances but share common concerns about our lives. I have been blessed with good health all my life. I had never even been in the hospital before I had my surgey last October on my birthday. A routine laparscopic lymph node extraction became an 8 hour surgery with an 8 day hospital stay. Very painful and nearly fatal. What a rude awakening! People tell me I look early 50's, zooming around the world for work and I guess feeling invincible despite my fatigue and leg pains. Giving that up is difficult. I have some of how you feel getting sick so soon after completing school. I trust you still have a long and productive life ahead of you! Hang in there and pursue your dreams even if on a part-time basis. Time is really all we have. Use it well!
  • Unknown
    Unknown
    #13
    anliperez915 said:

    Hi GKH
    Just wanted to welcome you to the group. I like you have fatigue, pain and my sex life has gone down hill along with many other things lol! I was diagnosed a year ago with Splenic Marginal Zone NHL stage 4, tumors in spleen, liver and bone marrow involvement! I've only had Rituxan treatment in Feb and will start another round the 19th of this month. Don't really like the treatment, I had a rough time with it. Hope this time is better but still grateful that I've only had Rituxan than the harsher treatments. I really do feel what you are saying about being "pissed off" I had barely graduated with a Bachelors in Accounting, was planning on working and making the big bucks but didn't even get a chance to do anything! Had to get disabled because of the lack of insurance from my husbands job, I also have other illnesses that insurances will deny me for plus the cancer. I really really wish that I didn't have any of this crap (excuse my french) to deal with and that I would be healthy enough to work and make a good living. Please take care of yourself and just hang in there!

    Sincerely,
    Liz

    Hi Liz
    sorry to hear of your misfortune but also happy you are doing well. Seems each of us is a bit different in our circumstances but share common concerns about our lives. I have been blessed with good health all my life. I had never even been in the hospital before I had my surgey last October on my birthday. A routine laparscopic lymph node extraction became an 8 hour surgery with an 8 day hospital stay. Very painful and nearly fatal. What a rude awakening! People tell me I look early 50's, zooming around the world for work and I guess feeling invincible despite my fatigue and leg pains. Giving that up is difficult. I have some of how you feel getting sick so soon after completing school. I trust you still have a long and productive life ahead of you! Hang in there and pursue your dreams even if on a part-time basis. Time is really all we have. Use it well!
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #14
    electrolytes to hydrate
    Hi GKH....I am a two year FNHL survivor and have dealt with painful achy legs, knees, ankles mostly and when it's the worst, my feet and hands. After two years of no answers from the medical profession, I've come to believe treatments severely dehydrate the body to the point that you must drink Powerade type drinks with electrolytes to get the body hydrated. with this hot humid weather we're having, I've noticed my legs are achy painful again...so I'm drinking more water and drinks with electrolytes and it has helped...feeling much better today! Cheers! Janelle
  • Unknown
    Unknown
    #15
    CountryGal7557 said:

    electrolytes to hydrate
    Hi GKH....I am a two year FNHL survivor and have dealt with painful achy legs, knees, ankles mostly and when it's the worst, my feet and hands. After two years of no answers from the medical profession, I've come to believe treatments severely dehydrate the body to the point that you must drink Powerade type drinks with electrolytes to get the body hydrated. with this hot humid weather we're having, I've noticed my legs are achy painful again...so I'm drinking more water and drinks with electrolytes and it has helped...feeling much better today! Cheers! Janelle

    Hydration
    Thank you for your comments. I try to stay hydrated. One thing that seems to help is to drink only room temp drinks. Sounds awful but cold drinks are hard for me to drinkin large amounts. I drink 16 oz of water immediately after getting out of bed and before having coffee or eating. I do the same before each meal. Seems to help. Also celebrex helps. Biggest pain for me is ijoint pain n the shoulders, knees and hands. Leg muscles ache and hurt all the time. All I want to do is sleep.
  • Unknown
    Unknown
    #16
    anliperez915 said:

    Hi GKH
    Just wanted to welcome you to the group. I like you have fatigue, pain and my sex life has gone down hill along with many other things lol! I was diagnosed a year ago with Splenic Marginal Zone NHL stage 4, tumors in spleen, liver and bone marrow involvement! I've only had Rituxan treatment in Feb and will start another round the 19th of this month. Don't really like the treatment, I had a rough time with it. Hope this time is better but still grateful that I've only had Rituxan than the harsher treatments. I really do feel what you are saying about being "pissed off" I had barely graduated with a Bachelors in Accounting, was planning on working and making the big bucks but didn't even get a chance to do anything! Had to get disabled because of the lack of insurance from my husbands job, I also have other illnesses that insurances will deny me for plus the cancer. I really really wish that I didn't have any of this crap (excuse my french) to deal with and that I would be healthy enough to work and make a good living. Please take care of yourself and just hang in there!

    Sincerely,
    Liz

    Rituxan
    How are your treatments going.? Mine are 800 mg every 8 weeks Indefinitely. So far no infections for me after 9 mos. I go back for my next infusion on Sept. 11 and PET Scan on Sept. 16

    All my best wishes and hope your infusions are getting easier with time.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #17
    unknown said:

    Hydration
    Thank you for your comments. I try to stay hydrated. One thing that seems to help is to drink only room temp drinks. Sounds awful but cold drinks are hard for me to drinkin large amounts. I drink 16 oz of water immediately after getting out of bed and before having coffee or eating. I do the same before each meal. Seems to help. Also celebrex helps. Biggest pain for me is ijoint pain n the shoulders, knees and hands. Leg muscles ache and hurt all the time. All I want to do is sleep.

    Pain

    I am glad you wrote, GKH. Muscle and ortho pain are very common with Rituxan. I felt like I had the flu with it most of the time. It is much milder than a lot of other stuff, however, so I hope it does the job for you by itself.

    max
  • anliperez915
    anliperez915 Member Posts: 770
    #18
    unknown said:

    Rituxan
    How are your treatments going.? Mine are 800 mg every 8 weeks Indefinitely. So far no infections for me after 9 mos. I go back for my next infusion on Sept. 11 and PET Scan on Sept. 16

    All my best wishes and hope your infusions are getting easier with time.

    Hi GKH
    Hi GKH,
    I just finished my second round two weeks ago and happy to say that this time was easier! Less side effects than the first time, only fatigue and muscle pain (I only turnned red on the first infusion) but everything was better. I'll be having another BMB in two months and more test, and then will go from there. I really hope that this round was my last one, I know that if I have to do more I'll do them but I'd preferred not.
    Thank you for asking and I hope that your treatments are not indefinite and that your next pet scan comes back clean...Wishing you only the best...take care

    Sincerely,
    Liz

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