LittleMe79
06-10-2009, 02:54 PM
Hello
Are there any NLPHD'ers here? Anyone who has relapsed?
I was diagnosed in 2002, and treated with 4 cycles of ABVD followed by radiation.
Two weeks ago I had a laparoscopy as they suspect I have relapsed. The surgean said the CT did look abnormal, and the lymph node he removed was "bumpy" and looked highly suspicious. It is not huge - just about 2cm - but has been growing slowly for about a year. I have several lymph nodes like that in the abdomen. Can a "bumpy" lymph node turn out to be normal, or is it always cancer?
I have also been abnormaly tired since last fall, I've had night sweats for 3-4 months and itchy skin, so It doesn't look good (still hoping for the infection-card though..)
What will the next step be if this is a relapse? I guess not an SCT yet, as it is a late relapse. When I search the net, I find numerous chemo regimen which may be used. Does anyone know which one is mostly used for NLPHD relapses? I hope they will give me one of those without the Prednisone, I'd do anything not to have that..
Could radiation with no chemo be an alternative? All the enlarge nodes they have detected so far are outside the radiation field from last round.
I'm sorry about my too many questions. I'm getting nuts from all the waiting...
Are there any NLPHD'ers here? Anyone who has relapsed?
I was diagnosed in 2002, and treated with 4 cycles of ABVD followed by radiation.
Two weeks ago I had a laparoscopy as they suspect I have relapsed. The surgean said the CT did look abnormal, and the lymph node he removed was "bumpy" and looked highly suspicious. It is not huge - just about 2cm - but has been growing slowly for about a year. I have several lymph nodes like that in the abdomen. Can a "bumpy" lymph node turn out to be normal, or is it always cancer?
I have also been abnormaly tired since last fall, I've had night sweats for 3-4 months and itchy skin, so It doesn't look good (still hoping for the infection-card though..)
What will the next step be if this is a relapse? I guess not an SCT yet, as it is a late relapse. When I search the net, I find numerous chemo regimen which may be used. Does anyone know which one is mostly used for NLPHD relapses? I hope they will give me one of those without the Prednisone, I'd do anything not to have that..
Could radiation with no chemo be an alternative? All the enlarge nodes they have detected so far are outside the radiation field from last round.
I'm sorry about my too many questions. I'm getting nuts from all the waiting...
Sponsor
singer78
07-02-2009, 11:06 PM
What does "NLPHD" stand for?
I'm sorry I don't have any answers for you. I'm a survivor of Hodgkin's Lymphoma since Dec. '07.
I had 8 cycles of ABVD and 20 rad's.
I check back here from time to time, since this board was an amazing source of support for me.
I thought I'd "bump" you up, so someone might have some answers for you.
The best of luck to you.
Keep us posted.
S.
I'm sorry I don't have any answers for you. I'm a survivor of Hodgkin's Lymphoma since Dec. '07.
I had 8 cycles of ABVD and 20 rad's.
I check back here from time to time, since this board was an amazing source of support for me.
I thought I'd "bump" you up, so someone might have some answers for you.
The best of luck to you.
Keep us posted.
S.
lymphpre
07-06-2009, 03:44 PM
Hi there,
I'm a NLPHD (nodular lymphocyte predominant hodgkins disease), and I have had two relapses. I first had radiation only, to lymph nodes in the neck. I then had enlarged lymph nodes in the abdomen, so had chemo (6 cycles of ClVPP). 10 years later, relapsed in the abdomen again, and got 6 cycles of R-ABVD.
So your situation may potentially have some overlap with mine, as some of the things you raise were issues I discussed.
Bumpy lymph nodes can turn out to be non-cancerous, but NLPHD does sometimes relapse in the abdomen, even though it never presented there initially. There was quite a bit of debate about my second relapse, but it was settled by biopsy in the end.
I too discussed STC, given the length of remission, it was felt that salvage chemo was the best option. I had prednisolone as part of my earlier chemo, and did not want to have it again. Ironically, the bleomycin in the ABVD has given me pulmonary fibrosis, for which I have been on prednisolone ever since.
There are several different regimes they may suggest, but probably not more ABVD as there are lifetime doses of bleomycin and doxorubicin that should not be exceeded. Whatever it is, they are likely to include rituxan, which is a monoclonal anti-body therapy. It is mainly used for non-hodgkins lymphoma, but NLPHD is really a form of B-cell lymphoma rather than true hodgkins, so rituxan is now used for that as well. They may suggest R-CHOP, which does include prednisolone, but they may suggest something completely different.
Regarding radiation, I asked about that as well, praying for any option that would spare me more chemotherapy. Unfortunately, I was told this was not an option as the lymph nodes were in the abdomen, and the risk of serious damage to the intestines would be too great. Someone very close to me did have radiation therapy to abdominal lymph nodes (the aim was to shrink rather than cure, so it was only 1 week of radiation). The side effects were terrible, and she died shortly afterwards deeply regretting her decision to have the treatment.
Let us know how you get on, and please ask as many questions as you like.
I'm a NLPHD (nodular lymphocyte predominant hodgkins disease), and I have had two relapses. I first had radiation only, to lymph nodes in the neck. I then had enlarged lymph nodes in the abdomen, so had chemo (6 cycles of ClVPP). 10 years later, relapsed in the abdomen again, and got 6 cycles of R-ABVD.
So your situation may potentially have some overlap with mine, as some of the things you raise were issues I discussed.
Bumpy lymph nodes can turn out to be non-cancerous, but NLPHD does sometimes relapse in the abdomen, even though it never presented there initially. There was quite a bit of debate about my second relapse, but it was settled by biopsy in the end.
I too discussed STC, given the length of remission, it was felt that salvage chemo was the best option. I had prednisolone as part of my earlier chemo, and did not want to have it again. Ironically, the bleomycin in the ABVD has given me pulmonary fibrosis, for which I have been on prednisolone ever since.
There are several different regimes they may suggest, but probably not more ABVD as there are lifetime doses of bleomycin and doxorubicin that should not be exceeded. Whatever it is, they are likely to include rituxan, which is a monoclonal anti-body therapy. It is mainly used for non-hodgkins lymphoma, but NLPHD is really a form of B-cell lymphoma rather than true hodgkins, so rituxan is now used for that as well. They may suggest R-CHOP, which does include prednisolone, but they may suggest something completely different.
Regarding radiation, I asked about that as well, praying for any option that would spare me more chemotherapy. Unfortunately, I was told this was not an option as the lymph nodes were in the abdomen, and the risk of serious damage to the intestines would be too great. Someone very close to me did have radiation therapy to abdominal lymph nodes (the aim was to shrink rather than cure, so it was only 1 week of radiation). The side effects were terrible, and she died shortly afterwards deeply regretting her decision to have the treatment.
Let us know how you get on, and please ask as many questions as you like.
LittleMe79
07-13-2009, 06:10 PM
Hello!!
Thanks for answering - nice to hear from someone in a similar situation.
I got my results back. They're still not sure... They didn't find hodgkin's, but something else (I don't know what) which is connected to the NLPHD-type. They say that I may have relapsed in another node than the one they biopsied, or that I may relapse further on.
I don't really know what to believe. Some doctors I've talked to say I may have relapsed, and some say they are worried (at least it's no rush finding out - they say).
I'm having a PET in a couple of months. I'm still having night sweats and I'm a lot more fatigued than the usual, but it's not acute. All the doctors I know are on vacation, so I'm thinking I'll just wait untill I can talk to a doctor that I trust, and someone who takes me seriously.
How have you coped with the long time effects? Are you able to live a normal life? I've had a lot of problems with fatigue since I was last treated in 2002. I thought it would pass after months or years, but it doesn't seem like it.
Have you experienced any fatigue - and - have you gotten the energy back again? I'm still hoping.. I feel like I haven't really had a life these last 7 years - I go to work and after that there is no more energy left for doing anything. I'm sick of it. If you have any advice here - I'd love to hear them...:)
Thanks for answering - nice to hear from someone in a similar situation.
I got my results back. They're still not sure... They didn't find hodgkin's, but something else (I don't know what) which is connected to the NLPHD-type. They say that I may have relapsed in another node than the one they biopsied, or that I may relapse further on.
I don't really know what to believe. Some doctors I've talked to say I may have relapsed, and some say they are worried (at least it's no rush finding out - they say).
I'm having a PET in a couple of months. I'm still having night sweats and I'm a lot more fatigued than the usual, but it's not acute. All the doctors I know are on vacation, so I'm thinking I'll just wait untill I can talk to a doctor that I trust, and someone who takes me seriously.
How have you coped with the long time effects? Are you able to live a normal life? I've had a lot of problems with fatigue since I was last treated in 2002. I thought it would pass after months or years, but it doesn't seem like it.
Have you experienced any fatigue - and - have you gotten the energy back again? I'm still hoping.. I feel like I haven't really had a life these last 7 years - I go to work and after that there is no more energy left for doing anything. I'm sick of it. If you have any advice here - I'd love to hear them...:)
lymphpre
07-14-2009, 06:51 PM
Hi there,
sounds like nobody is giving you answers. I think you need to pin them down on exactly what the biopsy has shown. Something related to NLPHD? That could mean anything. If they say there is no rush to find out, I assume the biopsy did not show high grade trasformation. NLPHD can sometimes transform to a large B cell lymphoma, which is far more aggressive. If they had found that, I imagine there would be more of a sense of urgency.
NLPHD is possibly the most indolent (slow-growing) form of lymphoma, and my experience has been that the medics do not feel the need to come up with answers quickly.
Fatigue was never a problem until my second relapse, and treatment with R-ABVD. Since then I have felt exhausted all the time, and sweat profusely. Big contrast to my earlier experience of chemotherapy with ClVPP, where I felt almost as good as new three months post treatment. Now, I really doubt that I will ever get back to feeling "normal" again.
I hope you get some answers soon.
sounds like nobody is giving you answers. I think you need to pin them down on exactly what the biopsy has shown. Something related to NLPHD? That could mean anything. If they say there is no rush to find out, I assume the biopsy did not show high grade trasformation. NLPHD can sometimes transform to a large B cell lymphoma, which is far more aggressive. If they had found that, I imagine there would be more of a sense of urgency.
NLPHD is possibly the most indolent (slow-growing) form of lymphoma, and my experience has been that the medics do not feel the need to come up with answers quickly.
Fatigue was never a problem until my second relapse, and treatment with R-ABVD. Since then I have felt exhausted all the time, and sweat profusely. Big contrast to my earlier experience of chemotherapy with ClVPP, where I felt almost as good as new three months post treatment. Now, I really doubt that I will ever get back to feeling "normal" again.
I hope you get some answers soon.
LittleMe79
09-07-2009, 04:26 PM
Hello again
I'm sorry I haven't replied earlier. I got kind of fed-up with the whole cancer-thing, as I couldn't really get an answer I could understand or trust. So, I have enjoyed the summer trying to wipe all cancer-thoughts out of my brain.
Today I had to let them back, as I had a PET today. (My first, actually, they didn't have that where I live when I was first diagnosed, It's pretty new here).
I will probably have the results in 3 weeks, as I have been given a doctors appointment then. I'm hoping they'll send me a letter with the results earlier, but probably not.
Hope you're all ok, I'll let you know about my results when I get them:).
(Lymphpre: interesting to hear you also got fatigue after ABVD - do you know if fatigue is more common after ABVD than other treatments? Maybe it's just a coincidence.....)
I'm sorry I haven't replied earlier. I got kind of fed-up with the whole cancer-thing, as I couldn't really get an answer I could understand or trust. So, I have enjoyed the summer trying to wipe all cancer-thoughts out of my brain.
Today I had to let them back, as I had a PET today. (My first, actually, they didn't have that where I live when I was first diagnosed, It's pretty new here).
I will probably have the results in 3 weeks, as I have been given a doctors appointment then. I'm hoping they'll send me a letter with the results earlier, but probably not.
Hope you're all ok, I'll let you know about my results when I get them:).
(Lymphpre: interesting to hear you also got fatigue after ABVD - do you know if fatigue is more common after ABVD than other treatments? Maybe it's just a coincidence.....)