recently diagnosed with NLPHL and scared out of my mind

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  • Aaron
    Aaron Member Posts: 237
    #62
    Max Former Hodgkins Stage 3 said:

    Move on...

    Aaron,

    Good deal. As I said, a person can "research" him or her self into a psychosis. Any board certified onc is going to know exactly what he or she is doing.

    Chop and abvd are both a cake-walk compared to MOPP, so let's all be happy and pray for the best.

    Bless you guys,

    max

    .

    Thanks max, your the man.
    Thanks max, your the man. Btw did you smoke before your dx?
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #63
    Aaron said:

    Thanks max, your the man.
    Thanks max, your the man. Btw did you smoke before your dx?

    Smoke

    Aaron,

    I have never smoked. But, in 1986, my chest cavity was crushed in a car wreck, and I was on a ventillator for 16 days. I had a collapsed right lung, and I may (or may not) have had pneumonia during this time. Overall, 18 fractures and a torn-loose knee cap.

    Therefore, I had serious lung issues before beginning abvd. Bleomycin mostly gives problems to the older (60 or above), or those with serious lung histories, like me (I was 53 when I began abvd). As I stated before, all of the chemo information sites state that Bleomycin has NO lung symptoms in 90% of all users.

    I guess your first infusion is coming up soon. My first one was a long day, over 8 hours. They will go very slowly at first, watching for allergic reactions. You will get a fair amount of benadryl, which might cause you to doze off at times. Later, things will speed up a good bit. My later infusions took about 7-7.5 hours.

    You will receive huge amounts of fluids -- many bags full. I felt like the Michelin Man when I left infusion.

    Also, by about the fourth hour, I was going to urinate every 20 minutes or so.

    One thing I did not do well is drink enough water: They will constantly hammer into your head to drink huge amounts of water. DO IT !

    Dehydration is a very common problem in chemo, and it makes you feel much worse, physicaly. So, remember to drink water constantly for the next six months. Some people cannot drink enough, and have to go receive fluids at the infusion center itself.

    DRINK !

    max
  • MNK
    MNK Member Posts: 12
    #64
    You will survive NLPHL
    I'm sorry that you have joined our special club. I was diagnosed with stage 3 NLPHL in September 2009. I had 12 infusions (6 cycles) of ABVD and 6 Rituxan treatments. What you will discover is that our disease responds very quickly to chemo, after 2-1/2 cycles and 2 Rituxans my disease was basically in remission. Since I stopped treatment in March 2010 every PET, CAT and blood test has come back clean. There is light at the end of the tunnel. Rememeber statistically our remission rate is in the upper 90 percentile. Please search this site since I have posted information/antedotes on what I did to deal with the potential stomach pain, how to prevent the bone pain if you get a neulasta shot and some of the long term side effects I incurred post treatment. Remember the key to this ordeal is your attitude. Good luck.
  • Aaron
    Aaron Member Posts: 237
    #65
    MNK said:

    You will survive NLPHL
    I'm sorry that you have joined our special club. I was diagnosed with stage 3 NLPHL in September 2009. I had 12 infusions (6 cycles) of ABVD and 6 Rituxan treatments. What you will discover is that our disease responds very quickly to chemo, after 2-1/2 cycles and 2 Rituxans my disease was basically in remission. Since I stopped treatment in March 2010 every PET, CAT and blood test has come back clean. There is light at the end of the tunnel. Rememeber statistically our remission rate is in the upper 90 percentile. Please search this site since I have posted information/antedotes on what I did to deal with the potential stomach pain, how to prevent the bone pain if you get a neulasta shot and some of the long term side effects I incurred post treatment. Remember the key to this ordeal is your attitude. Good luck.

    Hi mnk
    I've been trying to find your previous posts but to no avail. I'm new to the forum so I'm not too good at navigating it yet. I'm startIng r-abvd on Friday so I'm sure I'll be looking to you and max for insight and advice. Thanks, Aaron
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #66
    Aaron said:

    Hi mnk
    I've been trying to find your previous posts but to no avail. I'm new to the forum so I'm not too good at navigating it yet. I'm startIng r-abvd on Friday so I'm sure I'll be looking to you and max for insight and advice. Thanks, Aaron

    MNK !

    Mnk,

    Greetings from Max as well !

    It sounds like our experiences have been very similiar. I did 12 r-abvd also, but I got rituxan 12 times (at each infusion).

    NLPHL is very treatable, as you note -- an "indolent," slow-moving cancer.

    Because of my age when I began (53 at the time, Stage 3-A, no bone marrow involvement) my oncologist (a brilliant man, with degrees and training from Sanford, UCLA, and Duke) said my "Five year clean" chances were right at 60 % I have read the "90 %" number, which is an aggregate, and does not break out negative individual factors, such as age at diagnosis, etc.

    Nonetheless, it is among the most beatable cancers for all age groups, including us, and a postivite attitude is seriously important.

    Like Aaron, I find this Discussion format very cumbersome, and one of the worst for tracking friends. It needs serious sorftware improvements. But, it is a blessing for us all. Great having you with us.

    max

    .
  • MNK
    MNK Member Posts: 12
    #67
    Max Former Hodgkins Stage 3 said:

    MNK !

    Mnk,

    Greetings from Max as well !

    It sounds like our experiences have been very similiar. I did 12 r-abvd also, but I got rituxan 12 times (at each infusion).

    NLPHL is very treatable, as you note -- an "indolent," slow-moving cancer.

    Because of my age when I began (53 at the time, Stage 3-A, no bone marrow involvement) my oncologist (a brilliant man, with degrees and training from Sanford, UCLA, and Duke) said my "Five year clean" chances were right at 60 % I have read the "90 %" number, which is an aggregate, and does not break out negative individual factors, such as age at diagnosis, etc.

    Nonetheless, it is among the most beatable cancers for all age groups, including us, and a postivite attitude is seriously important.

    Like Aaron, I find this Discussion format very cumbersome, and one of the worst for tracking friends. It needs serious sorftware improvements. But, it is a blessing for us all. Great having you with us.

    max

    .

    Max & Aaron
    Max,

    Every survivors' ONC has a different opinion as to remission and surivial rate. The real problem is the lack of statisical data to make any definitive predictions. My age was 48 when I got my diagnosis. (Funny how this is suppose to be a younger person's disease)

    Aaron look for posts in 2010/early 2011 regarding NLPHL. My posts should be there. It was another NLPHL discussion. Yogurt for stomach pain, advil/aleve/tylenol before neulasta to eliminate the bone pain. Just post questions if you have any.

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