recently diagnosed with NLPHL and scared out of my mind

24

Comments

  • ta8631
    ta8631 Member Posts: 40
    #22
    Max Former Hodgkins Stage 3 said:

    Infusion

    Ta,

    Tell us how Infusion 1 went, when you feel up to it. I hope you are well.

    max

    .

    I am still new at this posting stuff :)
    Sorry Max i am a bit new on when and where i should post :) Thanks for being concerned. I had a pretty good weekend just alot of flu like symptoms but so far so good. Just taking one day at a time now and hopefully it doesn't get much worse as the treatments go one. Going to see my friendly chiropractor today as i can't seem to get much sleep due to my shoulder and back aches, not sure if it is all the driving and sitting last week or just bone pain from the nulesta shot but it is driving me crazy. Hopefully it works :)
  • DadysGirl
    DadysGirl Member Posts: 346
    #23
    nikkig43 said:

    Hello,
    My husband just finished treatment for Diffuse Large B Cell Non Hodgkins Lymphoma. He had 3 rounds of R-CHOP, then 4 weeks of daily radiation. He felt very strongly about continuing to work every day and he did. Our whole family tried to maintain our normal every day routine. It was what he wanted. There were days when he was very tired, but he never had issues with nausea or vomiting. He actually felt worse during the radiation part of treatment. He finished treatment on May 31st and he's feeling good.
    I just wanted you to know that it's possible keep working and keep life as normal as possible. Hang in there.

    Hi, is he in remission? What
    Hi, is he in remission? What stage was he where was the cancer? I hope he is in remission and eventually will be cured...
    Regards...
    Also, how old is he?
    My Dad has the same never went into remission :((( and now going in for stem cell transplant most likely tomorrow morning if platelets are high enough...
  • anliperez915
    anliperez915 Member Posts: 770
    #24
    DadysGirl said:

    Hi, is he in remission? What
    Hi, is he in remission? What stage was he where was the cancer? I hope he is in remission and eventually will be cured...
    Regards...
    Also, how old is he?
    My Dad has the same never went into remission :((( and now going in for stem cell transplant most likely tomorrow morning if platelets are high enough...

    Hi DadysGirl
    Hi DadysGirl,
    Hope that your dad's platelets are high enough so he can get his SCT! Keeping you and your dad in my prayers, hand in there sweetie.

    Sincerely,
    Liz
  • nikkig43
    nikkig43 Member Posts: 73
    #25
    DadysGirl said:

    Hi, is he in remission? What
    Hi, is he in remission? What stage was he where was the cancer? I hope he is in remission and eventually will be cured...
    Regards...
    Also, how old is he?
    My Dad has the same never went into remission :((( and now going in for stem cell transplant most likely tomorrow morning if platelets are high enough...

    Hello
    My husband has Diffuse Large B Cell Non Hodgkins Lymphoma Stage 2. It was primarily in his left tonsil and a couple of surrounding lymph nodes. A few weeks after his 3 RCHOP infusions, the PET scan revealed no sign of cancer. He then had 20 radiation treatments. His first post treatment scan is scheduled for mid July. Hoping he is still cancer free :) !! He is 51 years old.
    I hope your Dad has excellent results from the stem cell transplant. Stay strong and think positively.
    Take care, Nikki
  • Aaron
    Aaron Member Posts: 237
    #26
    nikkig43 said:

    Hello
    My husband has Diffuse Large B Cell Non Hodgkins Lymphoma Stage 2. It was primarily in his left tonsil and a couple of surrounding lymph nodes. A few weeks after his 3 RCHOP infusions, the PET scan revealed no sign of cancer. He then had 20 radiation treatments. His first post treatment scan is scheduled for mid July. Hoping he is still cancer free :) !! He is 51 years old.
    I hope your Dad has excellent results from the stem cell transplant. Stay strong and think positively.
    Take care, Nikki

    Hi max and ta
    I'm new to this thing only 10 days in from my GP calling me after dinner and dropping the bomb. Staging will be completed today and then I'll make the decision on treatment. LPHD is a tricky thing, I think I've had this for several years while my doctor told me it was all in my head and gave me happy pills(Xanax)and sent me home.Ta, like you I have a young child that will start kindegarden half way through treatment which I find a bit scary. As much as this disease sucks its comforting to me to be able to talk to others that have this rare subtype. I added you both to my friends list and hope we can chat often. Aaron
  • Aaron
    Aaron Member Posts: 237
    #27
    Aaron said:

    Hi max and ta
    I'm new to this thing only 10 days in from my GP calling me after dinner and dropping the bomb. Staging will be completed today and then I'll make the decision on treatment. LPHD is a tricky thing, I think I've had this for several years while my doctor told me it was all in my head and gave me happy pills(Xanax)and sent me home.Ta, like you I have a young child that will start kindegarden half way through treatment which I find a bit scary. As much as this disease sucks its comforting to me to be able to talk to others that have this rare subtype. I added you both to my friends list and hope we can chat often. Aaron

    How's it going Ta
    Hi Ta , how are you doing? Is treatment going alright? I hope your young ones are taking it easy on you and I hope your feeling alright. I'm starting in 2 weeks which has given me entirely too much time to think about all this but I'll be ported up and going in no time. Hope your doing well. Aaron
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #28
    Aaron said:

    How's it going Ta
    Hi Ta , how are you doing? Is treatment going alright? I hope your young ones are taking it easy on you and I hope your feeling alright. I'm starting in 2 weeks which has given me entirely too much time to think about all this but I'll be ported up and going in no time. Hope your doing well. Aaron

    Drug

    Aaron,

    Did you and your docs decide on a drug combo ?

    max
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #29
    Aaron said:

    How's it going Ta
    Hi Ta , how are you doing? Is treatment going alright? I hope your young ones are taking it easy on you and I hope your feeling alright. I'm starting in 2 weeks which has given me entirely too much time to think about all this but I'll be ported up and going in no time. Hope your doing well. Aaron

    Drug

    Aaron,

    Did you and your docs decide on a drug combo ?

    max
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #30
    Aaron said:

    How's it going Ta
    Hi Ta , how are you doing? Is treatment going alright? I hope your young ones are taking it easy on you and I hope your feeling alright. I'm starting in 2 weeks which has given me entirely too much time to think about all this but I'll be ported up and going in no time. Hope your doing well. Aaron

    Drug

    Aaron,

    Did you and your docs decide on a drug combo ?

    max
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #31
    Max Former Hodgkins Stage 3 said:

    Drug

    Aaron,

    Did you and your docs decide on a drug combo ?

    max

    X 3

    Sorry with the "Three-Peat."

    The system was slow that, at 4:00 AM, I thought it might be down for maintenance...

    max
  • Mueller
    Mueller Member Posts: 3
    #32
    Hi mate.... I had 6 rounds
    Hi mate.... I had 6 rounds of the beautiful r-chop... What I can gather is that all of these things affect people in different ways but my story pretty much goes like this...

    First two days I felt hungover then the rest of the first week I felt flat. Week two I felt average, not overly bad but not overly good either. Week three I felt normal. My hair didn't fall out completely. Prednisone sucked especially stopping it. Day 7 was usually the worst day in terms of energy levels. The mid games I found were way worse than the physical issues. I carried on life as usual and pretty much tried to pay no attention to what I was going through. After the very last treatment every joint in my body felt like it had broken glass in it. That lasted about a week then all back to normal except 12 kgs heavier. Now four months after treatment I feel back to normal. Taking salvestrols every day.... Google that and have a read...

    Steve
  • Aaron
    Aaron Member Posts: 237
    #33
    Max Former Hodgkins Stage 3 said:

    X 3

    Sorry with the "Three-Peat."

    The system was slow that, at 4:00 AM, I thought it might be down for maintenance...

    max

    Combo
    Hi max, we're just about to head out the door for the second opinion now. After that I'll decide but I'm still leaning toward r-abvd. I'll let y'all know this evening how it all went. I think I'm going to ask my doc for something to help me sleep I'm really getting punchy from lack of rest, and I haven't even started treatment yet, yikes
  • ta8631
    ta8631 Member Posts: 40
    #34
    Aaron said:

    How's it going Ta
    Hi Ta , how are you doing? Is treatment going alright? I hope your young ones are taking it easy on you and I hope your feeling alright. I'm starting in 2 weeks which has given me entirely too much time to think about all this but I'll be ported up and going in no time. Hope your doing well. Aaron

    Aaron
    Things are going well, my parents are in from washington and keeping me pretty busy and helping with the kids :) I am feeling pretty back to normal but that will soon change i am up for round two next week. My hair did start coming out this morning and that was hard. I feel extremely lucky to be feeling so good that i started to forget i had this nasty thing until this morning :( The waiting for you is probably the hardest. I found that the more time i had to think about things and that was awful. Keep me posted on your treatment and happy late 4th
  • Aaron
    Aaron Member Posts: 237
    #35
    ta8631 said:

    Aaron
    Things are going well, my parents are in from washington and keeping me pretty busy and helping with the kids :) I am feeling pretty back to normal but that will soon change i am up for round two next week. My hair did start coming out this morning and that was hard. I feel extremely lucky to be feeling so good that i started to forget i had this nasty thing until this morning :( The waiting for you is probably the hardest. I found that the more time i had to think about things and that was awful. Keep me posted on your treatment and happy late 4th

    It's official
    Well, got second opinion today from dr. At SCCA ( fred hutch center) and confirmed dx. No organ or bone involvement so it looks like 3a going to begin r-abvd in 2 weeks. Ta I'm glad to hear your doing well and hanging out with your folks. My onc. Showed me a stat today that literally confirms that we NLPHL folks are one in a million, my wife always says I am I just never thought it would be this way. Max, looks like I'm going with the same protocol as you I hope I can tolerate it as well as you did. When I describe this to my friends and family I like to quote Morgan freeman at the end of shawshank redemption " the man that crawled through a river of sh&@ and came out clean on the other side"
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #36
    Aaron said:

    It's official
    Well, got second opinion today from dr. At SCCA ( fred hutch center) and confirmed dx. No organ or bone involvement so it looks like 3a going to begin r-abvd in 2 weeks. Ta I'm glad to hear your doing well and hanging out with your folks. My onc. Showed me a stat today that literally confirms that we NLPHL folks are one in a million, my wife always says I am I just never thought it would be this way. Max, looks like I'm going with the same protocol as you I hope I can tolerate it as well as you did. When I describe this to my friends and family I like to quote Morgan freeman at the end of shawshank redemption " the man that crawled through a river of sh&@ and came out clean on the other side"

    Hee Hee
    Well at least I am glad to see you haven't lost your sense of humor. If you lose that then its over. John
  • Aaron
    Aaron Member Posts: 237
    #37
    COBRA666 said:

    Hee Hee
    Well at least I am glad to see you haven't lost your sense of humor. If you lose that then its over. John

    Haw
    No John , I've tried but it just follows me home every time ;)
  • Aaron
    Aaron Member Posts: 237
    #38
    Mueller said:

    Hi mate.... I had 6 rounds
    Hi mate.... I had 6 rounds of the beautiful r-chop... What I can gather is that all of these things affect people in different ways but my story pretty much goes like this...

    First two days I felt hungover then the rest of the first week I felt flat. Week two I felt average, not overly bad but not overly good either. Week three I felt normal. My hair didn't fall out completely. Prednisone sucked especially stopping it. Day 7 was usually the worst day in terms of energy levels. The mid games I found were way worse than the physical issues. I carried on life as usual and pretty much tried to pay no attention to what I was going through. After the very last treatment every joint in my body felt like it had broken glass in it. That lasted about a week then all back to normal except 12 kgs heavier. Now four months after treatment I feel back to normal. Taking salvestrols every day.... Google that and have a read...

    Steve

    Hi Steve, I took a look and
    Hi Steve, I took a look and it seems interesting and at a buck a pill pretty expensive. Can't put a price tag on your health and I'm very happy to see your doing we'll after treatment! Keep it up
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #39
    Aaron said:

    It's official
    Well, got second opinion today from dr. At SCCA ( fred hutch center) and confirmed dx. No organ or bone involvement so it looks like 3a going to begin r-abvd in 2 weeks. Ta I'm glad to hear your doing well and hanging out with your folks. My onc. Showed me a stat today that literally confirms that we NLPHL folks are one in a million, my wife always says I am I just never thought it would be this way. Max, looks like I'm going with the same protocol as you I hope I can tolerate it as well as you did. When I describe this to my friends and family I like to quote Morgan freeman at the end of shawshank redemption " the man that crawled through a river of sh&@ and came out clean on the other side"

    Thanks

    Aaron,

    Sometimes it is a relief to just know what the docs are going to throw at you. I'm very glad the bone marrow was clean !

    How many "cycles" (infusions) are they going to do ? Six or eight seem to be most common, but I did twelve.

    I would recommend going to your favorite restaurant at least twice a week, and treating yourself until you start, because within a few weeks, you may not feel like it for some time.

    R-abvd does not have the "P" drug that is in r-chop, which for many users stimulates appetite (the drug has several approved uses). I lost about 15% of my weight by the end of infusions (which I needed to do anyway !).

    As I wrote before, by my third infusion, I had over 70% reduction of tumor size. Bless you, and may it be a huge success.

    I am here to share experience and insight on this course of action. Keep us up to date.

    max

    .
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #40
    Aaron said:

    It's official
    Well, got second opinion today from dr. At SCCA ( fred hutch center) and confirmed dx. No organ or bone involvement so it looks like 3a going to begin r-abvd in 2 weeks. Ta I'm glad to hear your doing well and hanging out with your folks. My onc. Showed me a stat today that literally confirms that we NLPHL folks are one in a million, my wife always says I am I just never thought it would be this way. Max, looks like I'm going with the same protocol as you I hope I can tolerate it as well as you did. When I describe this to my friends and family I like to quote Morgan freeman at the end of shawshank redemption " the man that crawled through a river of sh&@ and came out clean on the other side"

    Crawling out...

    Aaron,

    I am a submarine service vet, "fast attack" variety. My boat specialized in Under Ice operations.

    I know what it is like to "crawl out" of something !

    I recall Paul McCartney's refrain in Band on the Run:

    "If we ever get out of here ! If we ever get out of here !"

    You will get to the end !

    max
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #41
    Aaron said:

    It's official
    Well, got second opinion today from dr. At SCCA ( fred hutch center) and confirmed dx. No organ or bone involvement so it looks like 3a going to begin r-abvd in 2 weeks. Ta I'm glad to hear your doing well and hanging out with your folks. My onc. Showed me a stat today that literally confirms that we NLPHL folks are one in a million, my wife always says I am I just never thought it would be this way. Max, looks like I'm going with the same protocol as you I hope I can tolerate it as well as you did. When I describe this to my friends and family I like to quote Morgan freeman at the end of shawshank redemption " the man that crawled through a river of sh&@ and came out clean on the other side"

    Crawling out...

    Aaron,

    I am a submarine service vet, "fast attack" variety. My boat specialized in Under Ice operations.

    I know what it is like to "crawl out" of something !

    I recall Paul McCartney's refrain in Band on the Run:

    "If we ever get out of here ! If we ever get out of here !"

    You will get to the end !

    max

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