Just diagnosed with NLPHL

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #22
    Aaron said:

    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

    Diagnosis

    I'm running out the door to work in 102 degree heat. My diagnosis was odd: I had severe chest pain, and the docs admitted me to hospital for angina. Turned out my heart was fine: It was a huge node pressing on my heart ! Without that chest pain, I would be dead today, since I never had any symptoms of lymphoma, except fatigue.

    I have lots of "Lymphoma Stories," if you wish to hear them...

    max

    .
  • Aaron
    Aaron Member Posts: 237
    #23
    Max Former Hodgkins Stage 3 said:

    Diagnosis

    I'm running out the door to work in 102 degree heat. My diagnosis was odd: I had severe chest pain, and the docs admitted me to hospital for angina. Turned out my heart was fine: It was a huge node pressing on my heart ! Without that chest pain, I would be dead today, since I never had any symptoms of lymphoma, except fatigue.

    I have lots of "Lymphoma Stories," if you wish to hear them...

    max

    .

    I'd love to hear all the
    I'd love to hear all the stories your willing to tell max. I'm not sure if its providence or dumb luck that got me to my dx . 102! Where do you live Texas?
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #24
    Aaron said:

    I'd love to hear all the
    I'd love to hear all the stories your willing to tell max. I'm not sure if its providence or dumb luck that got me to my dx . 102! Where do you live Texas?

    102

    Not Texas, SC. It has been over 103 for three days in a row (actually 105 here twice), and will be over 101 through Monday.

    Let me know the exact treatment your doc proposes. I recall being very thiankful when the PET showed no organ involvement, and the BM test was negative.

    Don't melt !

    max
  • Aaron
    Aaron Member Posts: 237
    #25
    Max Former Hodgkins Stage 3 said:

    102

    Not Texas, SC. It has been over 103 for three days in a row (actually 105 here twice), and will be over 101 through Monday.

    Let me know the exact treatment your doc proposes. I recall being very thiankful when the PET showed no organ involvement, and the BM test was negative.

    Don't melt !

    max

    Yikes thats hot
    I'm over here just outside of Seattle in kent so the weather is just a bit kinder. We've been working like crazy trying to get this house ready for a chemo patient to live in. We're probably overdoing it a bit but who knows. I think we've talked ourselves into letting two of our 5 pets go(ouch)because we believe it will put me in a safer position regarding infections. To tell you the truth were not at all certain thats enough but I cannot find any solid info on having chemo with pets in your home. As far as treatment goes I'm leaning toward r-abvd but I'm holding off final call until my second opinion on Thursday. I'll get my final staging on that day as well, I'm pretty sure I'll be 3a but who knows.

    Out of curiosity max, I'm sure you didn't have night sweats but did you ever spontaneously start sweating for no appearant reason or during eating? I'm not running consistant fevers so im just curious if it has something to do with the HD. The docs don't seem to have any answers so I figured I'd go right to the voice of experience. Have a good one Max, stay cool out there. Aaron
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #26
    Aaron said:

    Yikes thats hot
    I'm over here just outside of Seattle in kent so the weather is just a bit kinder. We've been working like crazy trying to get this house ready for a chemo patient to live in. We're probably overdoing it a bit but who knows. I think we've talked ourselves into letting two of our 5 pets go(ouch)because we believe it will put me in a safer position regarding infections. To tell you the truth were not at all certain thats enough but I cannot find any solid info on having chemo with pets in your home. As far as treatment goes I'm leaning toward r-abvd but I'm holding off final call until my second opinion on Thursday. I'll get my final staging on that day as well, I'm pretty sure I'll be 3a but who knows.

    Out of curiosity max, I'm sure you didn't have night sweats but did you ever spontaneously start sweating for no appearant reason or during eating? I'm not running consistant fevers so im just curious if it has something to do with the HD. The docs don't seem to have any answers so I figured I'd go right to the voice of experience. Have a good one Max, stay cool out there. Aaron

    Heat/Pets

    Aaron,

    You look too much like Kenny Chesney to live in the great Northwest !

    We hit 107 yesterday at the airport -- an all time high. This is Arizona weather, totally unusual for any part of SC. Today is forecast to be much cooler.

    I have not read a lot about the issue of pets. We kept our cats inside, and never had an inside dog. I took a neulasta shot two days after each infusion (which causes the bone-marrow to go into hyper-production of WBCs). My WBC counts stayed around 16,000, which is way high. The doc told me that my resistance should therefore be pretty good, despite the chemo. Of course, use common sense, and avoid crowds, etc. Keep a bottle of hand sanitizer with you all the time. I used to see a good number of patients at my infusion center wearing masks, but I never did. I believe that some chemo combos do WBC counts worse than r-abvd does. That is, some folks on various drugs are not so lucky, and do have low or marginal WBCs, even after neulasta, so you will just have to see how your results go.

    Night sweats (a "B" symptom) are uncommon in NLPHL; over 90% do not have "B" symptoms with NLPHL, I have read. Before I started chemo, I never had ANY symptom of lymphoma, and I never had the odd daytime sweats that you describe. Actually, I felt chills on the drugs most of the time, and could not stand being outside in winter, even for a few minutes. Rituxan and a couple of the other drugs cause flu-like symptoms in many people, including chills. I had muscle aches from my the second day after my first infusion, until I finished six months later. It was rough, needless to say. The flu-like feeling hit me faster than anything else: neuropaty, hair loss, etc., all came much later.

    My worse side-effect was lung toxicity from bleomycin, but I was older (53 beginning therapy). About 10% of bleomycin users have toxic reactions, which cause shortage of breath, but that means, of course, that 90% have no negative experience with it.

    Chemocare.com has excellent descriptions of all aspects of chemotherapy. It might meniton house pets. Go to "Chemotherapy Drugs" for drug-specific info.

    Let us know what treatment you decide upon.

    max
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #27
    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.

    Supreme court rip-off
    Aaron,
    Instead of listening to the bleeding heart liberal news stations on the local commercialized TV you should listen to the the conservative news stations like FOX News. The results of the Socialistic health plan will curl your toes.If we are past 50 Years of age,but plan to be one day, we may have some real problems with our health insurance as time goes on. A lot of medications and test needed are already being talked about that may be no longer covered.America is going to Hell in a handbasket very quickly.Only God can save America now. We can help a little come November.I know this is a political statement but people can not sweep this under the rug. Its real and it is going to happen. John
    BTW:I have been known to speak my mind on here a few times and also known to be flagged for my comments,but Oh,Well.
  • Aaron
    Aaron Member Posts: 237
    #28
    COBRA666 said:

    Supreme court rip-off
    Aaron,
    Instead of listening to the bleeding heart liberal news stations on the local commercialized TV you should listen to the the conservative news stations like FOX News. The results of the Socialistic health plan will curl your toes.If we are past 50 Years of age,but plan to be one day, we may have some real problems with our health insurance as time goes on. A lot of medications and test needed are already being talked about that may be no longer covered.America is going to Hell in a handbasket very quickly.Only God can save America now. We can help a little come November.I know this is a political statement but people can not sweep this under the rug. Its real and it is going to happen. John
    BTW:I have been known to speak my mind on here a few times and also known to be flagged for my comments,but Oh,Well.

    Thats what I mean
    You'll receive no flag from me. I'm glad to hear what you think, I hope more folks respond with their thoughts.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #29
    Aaron said:

    Thats what I mean
    You'll receive no flag from me. I'm glad to hear what you think, I hope more folks respond with their thoughts.

    Flags
    Aaron,
    I was never inferring a flag would come from you. There was a poster on here at one time that constantly flagged a lot of my responses. After checking into it I could find nothing about who it was. After a process of elimanation I finally figured it out. Then a poster wrote me a private message and said they also checked it out and she got an E-mail from Greta(the one that oversees the board) and for some reason gave the persons name who was doing all the flagging. It was the same one I figured it was. They very seldom post any longer so I may be safe. Keep us updated. John (FNHL-4-1A-5/10)
  • Aaron
    Aaron Member Posts: 237
    #30
    COBRA666 said:

    Flags
    Aaron,
    I was never inferring a flag would come from you. There was a poster on here at one time that constantly flagged a lot of my responses. After checking into it I could find nothing about who it was. After a process of elimanation I finally figured it out. Then a poster wrote me a private message and said they also checked it out and she got an E-mail from Greta(the one that oversees the board) and for some reason gave the persons name who was doing all the flagging. It was the same one I figured it was. They very seldom post any longer so I may be safe. Keep us updated. John (FNHL-4-1A-5/10)

    Flags
    I've never understood flagging, as long as one makes their points in a collegial fashion they should always speak their mind freely. That's the true beauty of our country.btw thanks for the well wishes John, I begin 6 rounds of r-abvd in 2 weeks and can use all the good ju-ju I can get ;). Aaron
  • Aaron
    Aaron Member Posts: 237
    #31
    Max Former Hodgkins Stage 3 said:

    Heat/Pets

    Aaron,

    You look too much like Kenny Chesney to live in the great Northwest !

    We hit 107 yesterday at the airport -- an all time high. This is Arizona weather, totally unusual for any part of SC. Today is forecast to be much cooler.

    I have not read a lot about the issue of pets. We kept our cats inside, and never had an inside dog. I took a neulasta shot two days after each infusion (which causes the bone-marrow to go into hyper-production of WBCs). My WBC counts stayed around 16,000, which is way high. The doc told me that my resistance should therefore be pretty good, despite the chemo. Of course, use common sense, and avoid crowds, etc. Keep a bottle of hand sanitizer with you all the time. I used to see a good number of patients at my infusion center wearing masks, but I never did. I believe that some chemo combos do WBC counts worse than r-abvd does. That is, some folks on various drugs are not so lucky, and do have low or marginal WBCs, even after neulasta, so you will just have to see how your results go.

    Night sweats (a "B" symptom) are uncommon in NLPHL; over 90% do not have "B" symptoms with NLPHL, I have read. Before I started chemo, I never had ANY symptom of lymphoma, and I never had the odd daytime sweats that you describe. Actually, I felt chills on the drugs most of the time, and could not stand being outside in winter, even for a few minutes. Rituxan and a couple of the other drugs cause flu-like symptoms in many people, including chills. I had muscle aches from my the second day after my first infusion, until I finished six months later. It was rough, needless to say. The flu-like feeling hit me faster than anything else: neuropaty, hair loss, etc., all came much later.

    My worse side-effect was lung toxicity from bleomycin, but I was older (53 beginning therapy). About 10% of bleomycin users have toxic reactions, which cause shortage of breath, but that means, of course, that 90% have no negative experience with it.

    Chemocare.com has excellent descriptions of all aspects of chemotherapy. It might meniton house pets. Go to "Chemotherapy Drugs" for drug-specific info.

    Let us know what treatment you decide upon.

    max

    Chemo
    Max, I'm curious what made you go with r-abvd instead of r-chop like Ta is taking? Ive been trying to research the differences in efficacy between the two and can't come up with much. I sure wish they had a clear concencious on how to treat NLPHL .
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #32
    Aaron said:

    Chemo
    Max, I'm curious what made you go with r-abvd instead of r-chop like Ta is taking? Ive been trying to research the differences in efficacy between the two and can't come up with much. I sure wish they had a clear concencious on how to treat NLPHL .

    Head or tails ?

    Aaron,

    See what I wrote on the other thread regarding the combo choice. For NLPHL, r-abvd is more common, both in the US and Europe. I suspect that either is excellent.

    max

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