recently diagnosed with NLPHL and scared out of my mind
Comments
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Thanks maxCrawling 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
It's going to be 6 months which I believe is 12 infusions. I must admit having so long to think about this makes me more nervious every day. Weighing the option of trying maintinence or shooting the moon has me tied up in knots. This thing is so counter intuitive I can't believe I'm going to put my body in such peril from chemo when I don't even feel sick. thanks for hangin in with me on this y'all, the roller coaster continues.0 -
That's wonderful Nikki...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
That's wonderful Nikki... Thank you so much we hope so too. Please keep,us posted and yes Praying for excellent continued clean results eventually cured....
Hugs..0 -
ChemoAaron said:Thanks max
It's going to be 6 months which I believe is 12 infusions. I must admit having so long to think about this makes me more nervious every day. Weighing the option of trying maintinence or shooting the moon has me tied up in knots. This thing is so counter intuitive I can't believe I'm going to put my body in such peril from chemo when I don't even feel sick. thanks for hangin in with me on this y'all, the roller coaster continues.
Aaron,
To the best of my knowledge, cancer never caused me pain or any side effect, except fatigue. The agony of chemo all came from the chemo.
But, it was the chemo that saved my life, and will yours, as well.
Do you have EnMed nausea medication yet? It is wonderful, effective stuff. Most docs use it now. Ask about it, if not.
Off to that desert, known as work...
max0 -
Yea it's weird the only painChemo
Aaron,
To the best of my knowledge, cancer never caused me pain or any side effect, except fatigue. The agony of chemo all came from the chemo.
But, it was the chemo that saved my life, and will yours, as well.
Do you have EnMed nausea medication yet? It is wonderful, effective stuff. Most docs use it now. Ask about it, if not.
Off to that desert, known as work...
max
Yea it's weird the only pain it gives is a pain in the a$&. I'll make sure to ask the doc about en med, we just got back from stocking up on ensure, senekot and antibacterial wipes. On a lighter note I'm finally sleeping I think the reality of this thing finally set in and now it's time to dig in for the long haul. Max i really appreciate you and lots of others on this board talking me through this thing. I hope someday to be the voice of experiance on the other end that can help out another newbie.0 -
SpecificsAaron said:Thanks max
It's going to be 6 months which I believe is 12 infusions. I must admit having so long to think about this makes me more nervious every day. Weighing the option of trying maintinence or shooting the moon has me tied up in knots. This thing is so counter intuitive I can't believe I'm going to put my body in such peril from chemo when I don't even feel sick. thanks for hangin in with me on this y'all, the roller coaster continues.
Aaron,
About to head out of town for about three days. I minght not be at this site again till Wednesday.
None of r-abvd is pill form, it is all IV. My first infusion took abut 8 hours, but the first is the slowest, as they check for allergic reactions, etc. Two of the drugs require "push control" by the infusion RN: the Vinblastine, and the "a" drug ("Red Devil"). This is because they are blister agents, and cannot be spilled. Another reason to have a port !
Adramycin ("Red Devil")will cause your urine to turn red, or at least pink, for several hours to a day or so, but this is normal, and NOT BLOOD.
One of the drugs requires that you eat ice while it is administered, but I cannot recall right off which it was, but I think it was the Vinblastine. I just wanted you to not be surprised by this practice. I little crunchy ice is fun anyway.
Bless you guys,
max
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Thanks max, have a good tripSpecifics
Aaron,
About to head out of town for about three days. I minght not be at this site again till Wednesday.
None of r-abvd is pill form, it is all IV. My first infusion took abut 8 hours, but the first is the slowest, as they check for allergic reactions, etc. Two of the drugs require "push control" by the infusion RN: the Vinblastine, and the "a" drug ("Red Devil"). This is because they are blister agents, and cannot be spilled. Another reason to have a port !
Adramycin ("Red Devil")will cause your urine to turn red, or at least pink, for several hours to a day or so, but this is normal, and NOT BLOOD.
One of the drugs requires that you eat ice while it is administered, but I cannot recall right off which it was, but I think it was the Vinblastine. I just wanted you to not be surprised by this practice. I little crunchy ice is fun anyway.
Bless you guys,
max
.
Thanks max, have a good trip and we'll chat when you get back0 -
My biggest FrustrationAaron said:Thanks max
It's going to be 6 months which I believe is 12 infusions. I must admit having so long to think about this makes me more nervious every day. Weighing the option of trying maintinence or shooting the moon has me tied up in knots. This thing is so counter intuitive I can't believe I'm going to put my body in such peril from chemo when I don't even feel sick. thanks for hangin in with me on this y'all, the roller coaster continues.
Aaron,
My biggest frustration is that the chemo has made me sicker than the cancer...not sure that really makes sense but oh well. Started losing my hair over the weekend
I will soon shave it as i am sick of it falling out all over the house lol. 0 -
Hairta8631 said:My biggest Frustration
Aaron,
My biggest frustration is that the chemo has made me sicker than the cancer...not sure that really makes sense but oh well. Started losing my hair over the weekend I will soon shave it as i am sick of it falling out all over the house lol.
Ta,
I recall when my hair began to drop out in gobs. It was emotional even for me, a guy. I eventually lost even my eyebrows and eyelashes.
The good news is it will be back soon... Hang in there !
max
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Perfect senseta8631 said:My biggest Frustration
Aaron,
My biggest frustration is that the chemo has made me sicker than the cancer...not sure that really makes sense but oh well. Started losing my hair over the weekend I will soon shave it as i am sick of it falling out all over the house lol.
Ta, that makes perfect sense to me, I just got home from playing 27 holes of golf ( my last hoorah for the year ) and I feel great. That's what truly po's me about NLPHL, I don't feel like I need 12 infusions of chemo but I know I do. This thing of ours screws as much with my mind as it does my body. Btw my hair was to the middle of my back, I shaved it off last week and donated it to locks of love. There's no way I could have watched it all fall out. Take care y'all, we'll talk soon. Aaron0 -
AwesomeAaron said:Perfect sense
Ta, that makes perfect sense to me, I just got home from playing 27 holes of golf ( my last hoorah for the year ) and I feel great. That's what truly po's me about NLPHL, I don't feel like I need 12 infusions of chemo but I know I do. This thing of ours screws as much with my mind as it does my body. Btw my hair was to the middle of my back, I shaved it off last week and donated it to locks of love. There's no way I could have watched it all fall out. Take care y'all, we'll talk soon. Aaron
That is so awesome you donated your hair.... mine wasn't long enough and i am a repeat offender to the salon for dye jobs lol. I did have my husband shave it off last night.... i thought i was going to have a heart attack but i had enough of it coming out. He was great about it and we laughed our tails off feel 100% better today just doing that. 0 -
Similar EffectsMueller 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
Sounds like the same side effects i have been having.... coming off that predinsone was probably the worst Did you lose your eyebrows and eyelashes?? I had my husband shave my head last night due to it falling out rapidly and am praying i can at least keep them while going through this nasty process. 0 -
The hair will grow backta8631 said:Similar Effects
Sounds like the same side effects i have been having.... coming off that predinsone was probably the worst Did you lose your eyebrows and eyelashes?? I had my husband shave my head last night due to it falling out rapidly and am praying i can at least keep them while going through this nasty process.
Hi TA.
I'm glad you decided to shave the hair - it's simpler to get that
over with and at least you have some control over it. If you haven't already,
find some crazy and fun headgear - your husband, friends, relatives can help.
As silly as it sounds, it takes the sting out of it to try to make it fun.
Headgear will also keep you warm. I found that I got cold easily due to no
hair on my head. I usually slept with a knit cap.
To respond to your question, I did lose most of my eyebrows and eyelashes.
I also lost most of the hair on my body too. On the positive side of that,
I certainly saved money on shaving and shampoo supplies. Also, I hadn't
been so "breezy" in certain places since pre-puberty if you know what I mean
.
It will grow back before you know it. Hang in there and laugh as much as you can.
I think you're doing great!
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. 0 -
hairjimwins said:The hair will grow back
Hi TA.
I'm glad you decided to shave the hair - it's simpler to get that
over with and at least you have some control over it. If you haven't already,
find some crazy and fun headgear - your husband, friends, relatives can help.
As silly as it sounds, it takes the sting out of it to try to make it fun.
Headgear will also keep you warm. I found that I got cold easily due to no
hair on my head. I usually slept with a knit cap.
To respond to your question, I did lose most of my eyebrows and eyelashes.
I also lost most of the hair on my body too. On the positive side of that,
I certainly saved money on shaving and shampoo supplies. Also, I hadn't
been so "breezy" in certain places since pre-puberty if you know what I mean.
It will grow back before you know it. Hang in there and laugh as much as you can.
I think you're doing great!
Hugs and positive thoughts,
Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
Hi Ta, good call on shaving your hair off. I think it gives us some controll over a situation in which our hands are " off the wheel " most of the time. It also looks like you have a spouse that has a sense if humor about all this and has a deep Commitment to helping you through this thing. I too have such a spouse and am so thankful for it every day. I'm curious what made you go with r -chop over r-abvd? I posed the same question to max and I ask all others on the board that have or had NLPHL , what made you go with your treatment course when there is no one treatment agreed upon academicly.0 -
RchopAaron said:hair
Hi Ta, good call on shaving your hair off. I think it gives us some controll over a situation in which our hands are " off the wheel " most of the time. It also looks like you have a spouse that has a sense if humor about all this and has a deep Commitment to helping you through this thing. I too have such a spouse and am so thankful for it every day. I'm curious what made you go with r -chop over r-abvd? I posed the same question to max and I ask all others on the board that have or had NLPHL , what made you go with your treatment course when there is no one treatment agreed upon academicly.
I visited with my dr extensively and he explained both have been known to work. He explained that rchop has been reported to have less long term effect and was less toxic. I also was a smoker and avbd has been know to pose more of a risk for lung problems with people that smoked. I researched both and didn't find the answer I wanted to leaned on my dr for his opinion. Have u decided what way u are going yet?0 -
That's interesting, the docsta8631 said:Rchop
I visited with my dr extensively and he explained both have been known to work. He explained that rchop has been reported to have less long term effect and was less toxic. I also was a smoker and avbd has been know to pose more of a risk for lung problems with people that smoked. I researched both and didn't find the answer I wanted to leaned on my dr for his opinion. Have u decided what way u are going yet?
That's interesting, the docs told me abvd was the least harsh regImen. I have smoked for years as well (not for 10 days now) and the b drug in abvd is known to cause lung problems. I live in Seattle, where do you live? I wonder if it's a regional thing. Max got r-abvd and he's in south Carolina so who knows. I wonder if they just flip a coin before making suggestions, I suppose in the end it's not the road but the destination that matters. Here's to us all getting better and staying that way. Aaron0 -
Drug ChoiceAaron said:That's interesting, the docs
That's interesting, the docs told me abvd was the least harsh regImen. I have smoked for years as well (not for 10 days now) and the b drug in abvd is known to cause lung problems. I live in Seattle, where do you live? I wonder if it's a regional thing. Max got r-abvd and he's in south Carolina so who knows. I wonder if they just flip a coin before making suggestions, I suppose in the end it's not the road but the destination that matters. Here's to us all getting better and staying that way. Aaron
Aaron and Ta,
I can't say what steers an oncologist toward one combination therapy verses another. I'd like to think that they have sound reasons. From what I have read over time, abvd is more commnly used for HL variants, and chop for NHL variants. Because NLPHL is an odd strain that has characteristics of both NHL and HL, and because it is rare, it is easy to see why sometimes a doctor or oncology group will fall on one side of the equation, and sometimes on the other. Over time, NLPHL has sort of evolved from "clearly" HL, and is in many circles viewed today as NHL. I know that only muddies the water more, not less, for us patients.
R-abvd was developed as a replacement for an older combo known as MOPP. The difference is that abvd is supposidly a lot less toxic than MOPP was, but MOPP was rough stuff, I am told. I have a friend who took it in the early 80s, and it was horrible, as he describes it. It saved him, however, and wih no relapses, ever. MOPP is still approved and is even used at times, but I have no idea why. I do believe that abvd is a little more commonly used for NLPHL, but I have no exact numbers for this.
I have not read a lot about r-chop. The bleomycin in abvd can be problematic with the lungs. It has a toxic reaction in about 10% of users, including me. Therefore, the doc will watch carefully for breathing issues. My doc had me go for a CT to verify that I was not having fibrosis when I started having shortness of breath, and I was not. I still have lung issues today, three years out, however. I certainly would not smoke during chemo. The good news is that 90% of bleomycin users have no lung side effects at all.
I have always heard that early-stage HL is often treated with radiation, and perhaps a few infusions, whereas Stage III or later ordinarily uses no radiation, and a long course of chemo. This is true of the three of us. I have also read that radiation on top of a lot of chemo significantly increases the chances of problems years later, so it is best avoided when possible. So there are a good number of similarities here, including the use of Rituxan.
It is very possible to worry yourself forever over these issues. I guess the best approach is to simply be aware of the potentials, trust, and know that both combos are highly effective, and that any chemo has the potential for serious side-effects.
Bless your treatments,
max
.0 -
Hi max, it's interesting youDrug Choice
Aaron and Ta,
I can't say what steers an oncologist toward one combination therapy verses another. I'd like to think that they have sound reasons. From what I have read over time, abvd is more commnly used for HL variants, and chop for NHL variants. Because NLPHL is an odd strain that has characteristics of both NHL and HL, and because it is rare, it is easy to see why sometimes a doctor or oncology group will fall on one side of the equation, and sometimes on the other. Over time, NLPHL has sort of evolved from "clearly" HL, and is in many circles viewed today as NHL. I know that only muddies the water more, not less, for us patients.
R-abvd was developed as a replacement for an older combo known as MOPP. The difference is that abvd is supposidly a lot less toxic than MOPP was, but MOPP was rough stuff, I am told. I have a friend who took it in the early 80s, and it was horrible, as he describes it. It saved him, however, and wih no relapses, ever. MOPP is still approved and is even used at times, but I have no idea why. I do believe that abvd is a little more commonly used for NLPHL, but I have no exact numbers for this.
I have not read a lot about r-chop. The bleomycin in abvd can be problematic with the lungs. It has a toxic reaction in about 10% of users, including me. Therefore, the doc will watch carefully for breathing issues. My doc had me go for a CT to verify that I was not having fibrosis when I started having shortness of breath, and I was not. I still have lung issues today, three years out, however. I certainly would not smoke during chemo. The good news is that 90% of bleomycin users have no lung side effects at all.
I have always heard that early-stage HL is often treated with radiation, and perhaps a few infusions, whereas Stage III or later ordinarily uses no radiation, and a long course of chemo. This is true of the three of us. I have also read that radiation on top of a lot of chemo significantly increases the chances of problems years later, so it is best avoided when possible. So there are a good number of similarities here, including the use of Rituxan.
It is very possible to worry yourself forever over these issues. I guess the best approach is to simply be aware of the potentials, trust, and know that both combos are highly effective, and that any chemo has the potential for serious side-effects.
Bless your treatments,
max
.
Hi max, it's interesting you mentioned the radiation thing, the doc at SCCA said their goal is to get away from radiation altogether for NLPHL at all stages. From what I've read the chop is more for NHL and the abvd for HL but both work for NLPHL. Your certainly right that working myself into a lather over these things is not a good idea, Too much time to think about all this stuff I guess. Both oncologists that I've talked to think r-abvd is the way to go so like you said its time to trust the docs and go foreward.0 -
Move on...Aaron said:Hi max, it's interesting you
Hi max, it's interesting you mentioned the radiation thing, the doc at SCCA said their goal is to get away from radiation altogether for NLPHL at all stages. From what I've read the chop is more for NHL and the abvd for HL but both work for NLPHL. Your certainly right that working myself into a lather over these things is not a good idea, Too much time to think about all this stuff I guess. Both oncologists that I've talked to think r-abvd is the way to go so like you said its time to trust the docs and go foreward.
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
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Thanks max, your the man.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. Btw did you smoke before your dx?0 -
Thanks max, your the man.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. Btw did you smoke before your dx?0
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