Relapsed NHL-Rituxan Maintenance or Stem Cell?
Comments
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Shinglesmiss maggie said:Shingles
My dear Sue,
How I wish I had the shingle vaccine years before my DX of NHL. I understand once you are DX with Lymphoma you cannot have the shingle vaccine> Any thoughts on this from anyone??
Love and hugs Maggie
Hi Maggie,
When I got my flu shot last fall, my PCP and Cancer doctor told me I could get the shingles shot if I wanted to. They just advised not to get both shots in the same day. I am still considering getting it, but it costs $250.00 which my insurance does not cover. Did your doctor tell you not to get the shot, or did you read that information
somewhere? Let me know what your doctor says...a couple of other opinions would be nice to know before getting the shot. Love you...Sue (FNHL-2-3A-6/10)0 -
Shingle vaccineallmost60 said:Shingles
Hi Maggie,
When I got my flu shot last fall, my PCP and Cancer doctor told me I could get the shingles shot if I wanted to. They just advised not to get both shots in the same day. I am still considering getting it, but it costs $250.00 which my insurance does not cover. Did your doctor tell you not to get the shot, or did you read that information
somewhere? Let me know what your doctor says...a couple of other opinions would be nice to know before getting the shot. Love you...Sue (FNHL-2-3A-6/10)
Hi Sue,
When I first heard of the Shingle Vaccine it was quite new. This was before I was Dx with NHL. I wanted to wait awhile since it was new on the market. Then I was DX with NHL. I did
research online, and it did say if you were DX with LYMPHOMA the vaccine wouldn't be
a good idea. I asked my internist and he agreed. I wonder now, since your oncologist
said it was OK. I am scheduled to see my oncologist in August. I will be sure to question
her on this vaccine.
Thanks so much for the info. Love you and enjoy your trip and visit with your sister's.
Love Maggie0 -
Shinglesmiss maggie said:Shingle vaccine
Hi Sue,
When I first heard of the Shingle Vaccine it was quite new. This was before I was Dx with NHL. I wanted to wait awhile since it was new on the market. Then I was DX with NHL. I did
research online, and it did say if you were DX with LYMPHOMA the vaccine wouldn't be
a good idea. I asked my internist and he agreed. I wonder now, since your oncologist
said it was OK. I am scheduled to see my oncologist in August. I will be sure to question
her on this vaccine.
Thanks so much for the info. Love you and enjoy your trip and visit with your sister's.
Love Maggie
My neighbor came down with NHL about a year before I got HL. He did r-chop as an inpatient for many months, and lost over 40% of his body weight in treatment, but then entered total remission, where he still is. About six months after entering C.R., he got a severe case of the shingles, which put him on his back again for months. I have never heard of a relationship between NHL or r-chop and shingles, but it may well be worth looking into.
He is 35, and now is having to have both hips replaced. His doc told him that the meds destroyed the blood flow to the hips, and that the bone has "died." I had never heard of that horror story before, either.
As I have mentioned before, chemocare.com has great, detailed info on all chemo drugs used in the US.
Max
.0 -
How are you doing? PleaseDanco_man said:Damn it....it's back
Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...
How are you doing? Please keep us posted... are they going to do an allogenic transplant? Is this in prep for that or some sort of maintenance or an attempt for remission?0 -
Danco man how are you doing?Shingles
My neighbor came down with NHL about a year before I got HL. He did r-chop as an inpatient for many months, and lost over 40% of his body weight in treatment, but then entered total remission, where he still is. About six months after entering C.R., he got a severe case of the shingles, which put him on his back again for months. I have never heard of a relationship between NHL or r-chop and shingles, but it may well be worth looking into.
He is 35, and now is having to have both hips replaced. His doc told him that the meds destroyed the blood flow to the hips, and that the bone has "died." I had never heard of that horror story before, either.
As I have mentioned before, chemocare.com has great, detailed info on all chemo drugs used in the US.
Max
.
Danco man how are you doing?0 -
my relapseDadysGirl said:Danco man how are you doing?
Danco man how are you doing?
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan0 -
my relapseDadysGirl said:Danco man how are you doing?
Danco man how are you doing?
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan0 -
Thanks for the updateDanco_man said:my relapse
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan
Hey Dan!
It's great to hear from you. I'm sorry you're having a difficult time.
You're in my thoughts and please know we're here for you.
Hugs,
Jim0 -
hard toDanco_man said:my relapse
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan
Hey Dan, sorry about the difficult time you are having. Like you said, try to be upbeat, know that you will get through this! Don't sweat about not posting, you got a lot on your plate right now, good luck with your treatment, and keep swinging..... Vinny0 -
Our prayers and thoughts arevinny59 said:hard to
Hey Dan, sorry about the difficult time you are having. Like you said, try to be upbeat, know that you will get through this! Don't sweat about not posting, you got a lot on your plate right now, good luck with your treatment, and keep swinging..... Vinny
Our prayers and thoughts are with you Dan... I hope somehow you will go back in remission and eventually a cure this time... My Dad just started SCT yesterday...
Take care Dan...please keep in touch hopefully you'll have GREAT news soon for us...0 -
Such a hard time.Danco_man said:my relapse
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan
Dear Dan,
I am so sorry for the hard time you have been having. Please don't give up.
Bendamusatine, I heard is very promising with good results. Rituxan also.
I don't remember, have you ever been on Rituxan before???
God bless. I send my best with prayers for you. Love Maggie0 -
Have Faith DanDanco_man said:my relapse
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan
Have Faith Dan,
Don't go into that dark place, I know it's really hard not go there right now but you just have to have faith in this new regimen. It will work and you will be ok! Take care of yourself and don't worry about not posting that often (just don't forget about us). (((HUGS)))
Sincerely,
Liz0 -
Dan...anliperez915 said:Have Faith Dan
Have Faith Dan,
Don't go into that dark place, I know it's really hard not go there right now but you just have to have faith in this new regimen. It will work and you will be ok! Take care of yourself and don't worry about not posting that often (just don't forget about us). (((HUGS)))
Sincerely,
Liz
Hi Dan,
I'm so sorry your not improving as fast as you'd like. Try to stay as positive as possible and give the new treatment time to work. My heart goes out to you and I know I would feel no different if I was in your shoes. Please know we are always here for you, and like Vinny said...post when you feel like it and don't worry if you can't or don't feel like it...our prayers will be with you no matter what. Take care friend...Sue
(FNHL-2-3A-6/10)0 -
I was told that I was in acaregiver1829 said:stem cell rituxin and treanda
A hi danco man and jimwns;
I'm familar with the big b,, and stem cell transplant.. my wife was diagnosied in o8 with filiclular and was treated with rchop, put n remission, then n 2010 we had relapse of filicular plus big b along with it, we did stem cell with draw, then rice chemo for 6 days straight at jewish,cincy oh knocked it off screen.. start rituxin maint in july 2011 of 4 treatments in 4 weeks then again this Jan 2012 and took pt scan 2 weeks ago and something is back in the area Jim is talking about.. we re doing biopsy Mar 1 to see what is back and how much.. as of now onc dr is leaning toward a realative new drug Bendamustine generic for Treanda.. we ll probally start something sometime in April..
from what i listen to on u-tube and read about it is a real favorable path to travel.. I will tell you more once we have our results back as to what path we ve decided to go down.. you might want to ask your onc dr about this Trenda treatment ...My wife did stem cell autogrotus and she says she ll never do it again, its pretty tough treatment to get thru.. she had an OUT OF BODY EXPERIENCE.. and she said that scared the H out of her.. go to u-tube and type in treanda and listen to some of the doc's on Treanda and bendamusdine drugs, hope this is of some use for you.. caregiver..
I was told that I was in a less than 5% group having both mixed follicular and B cell lymphoma.Was suprised when I saw that your wife had both also.Just caught my eye!0 -
just diagnosed with sameqckmom said:I was told that I was in a
I was told that I was in a less than 5% group having both mixed follicular and B cell lymphoma.Was suprised when I saw that your wife had both also.Just caught my eye!
I recently had a relapse of both follicular and B cell.
My doctor recommends Rice chemo and autologous bone marrow transplant.
I have a mass in my neck and tonsil area but recently it has shrunk 70% within 5 days so my dr. says lets slow down and evaluate situation as is referred to spontaneous regression. Have you had treatment? I guess we're in the 5% club.0 -
stay positiveDanco_man said:my relapse
Once again I apologize to all for not replying sooner.It's been a difficult few weeks.
I started two weeks ago on Rituxan, Treanda and something called Midaxantron. Rituxan and Treanda (also known as Bendamusatine) have been clinically shown to produce good resulta with relapsed Lymphoma. Not exactly sure what benefit there is by adding the 3rd drug-but I believe that it's something that's been used in combination with the R&T and has also shown good results.
My problem right now is that I am not generating any new blood cells on my own- so they've been giving me blood transfusions and platelets 3 times a week.I've been told that 'targeted' therapy takes longer to kick-in than ordinary chemo and that I should be patient. Easier said than done. In the past I've always seen quick results after 1st treatment-but these mono-clonal antibodies just seem to take longer.
Meanwhile I've developed a peripheral neuropathy in my hands (before it had only been in my toes) and I've also developed a rather ugly rash which I'm told is caused by the Lymphoma and not the chemo. All and all as I said earlier it's been a difficult time for me. Been trying to stay positive throughout-but sure would like to see some signs of improvemnt soon.
I wish I had better news to report-but after a failed SCT and being told that I am not eligible for a clinical trial (blood counts too low)I sometimes think that I'm running out of options if the Rituxan doesn't work.
Hope everyone is doing well and I'll try to be more diligent about staying in this discussion.
Dan
Dan,
I am a recent relapse with follicular and large cell NHL.
I have just joined the network and I have read your story.
I would have done everything you did and I wouldn't regret it. At least we have options some work and some don't but my goal is to keep fighting and each year there comes new advances in technology and drugs that may someday do the trick. Rituxan has worked wonders with me and if it does for you then your first line of defense will be Rituxan anytime.
My doctors are currently recommending for me RICE and Bone marrow transplant for my current diagnosis. I have lump mass in my neck and tonsil area with 70% large cell/30% follicular. And my bone marrow has evidence of follicular but not large cell so I can do Autogolous BMT. However, within the past 3-5 days after a pet scan my lump has shrunk by 70% so now my dr says let's slow down and eval as the incidence is phrased spontaneous regression. So, I have a reprieve for a week to see what they make of it.
Good luck to your continued treatment and it is good that you have continued options. Vince0 -
Welcome..hopenow2012 said:stay positive
Dan,
I am a recent relapse with follicular and large cell NHL.
I have just joined the network and I have read your story.
I would have done everything you did and I wouldn't regret it. At least we have options some work and some don't but my goal is to keep fighting and each year there comes new advances in technology and drugs that may someday do the trick. Rituxan has worked wonders with me and if it does for you then your first line of defense will be Rituxan anytime.
My doctors are currently recommending for me RICE and Bone marrow transplant for my current diagnosis. I have lump mass in my neck and tonsil area with 70% large cell/30% follicular. And my bone marrow has evidence of follicular but not large cell so I can do Autogolous BMT. However, within the past 3-5 days after a pet scan my lump has shrunk by 70% so now my dr says let's slow down and eval as the incidence is phrased spontaneous regression. So, I have a reprieve for a week to see what they make of it.
Good luck to your continued treatment and it is good that you have continued options. Vince
Hi Vince,
Just wanted to welcome you to the group. June 2010 I was diagnosed with Follicular NHL-stage3-grade2-typeA-with no bone marrow involvement. I did 6 rounds of CVP-R and immediately after finishing started a 2 year Rituxan maint. One infusion every other month...4 rounds left to go. My condition was deemed stable...never quite hit the remission stage since there is one pesky tumor that didn't shrink, but also hasn't grown. As far as I'm concerned, I'm in remission, because I feel great and having no problems to speak of. If you don't mind me asking...how long after your first rounds of treatment did you relapse? My Rituxan will be finished on Feb 14, 2013 and then we will go into the "watch and wait", so it's always in the back of my mind..."when" it will come back. I realize there is no way to predict, but when I hear people have relapsed, I'm always curious how long they they stayed in remission before relapse. My doctor has assured me there are more treatments available in case of a relapse, but I'm hoping I'll get to go more than a few months free and clear of doing any new treatments...(praying for years)!! Anyways..."Welcome to the group" and I hope you will continue to post and keep us up-dated on your progress and care. Best wishes...Sue (age 61)0 -
Danallmost60 said:Welcome..
Hi Vince,
Just wanted to welcome you to the group. June 2010 I was diagnosed with Follicular NHL-stage3-grade2-typeA-with no bone marrow involvement. I did 6 rounds of CVP-R and immediately after finishing started a 2 year Rituxan maint. One infusion every other month...4 rounds left to go. My condition was deemed stable...never quite hit the remission stage since there is one pesky tumor that didn't shrink, but also hasn't grown. As far as I'm concerned, I'm in remission, because I feel great and having no problems to speak of. If you don't mind me asking...how long after your first rounds of treatment did you relapse? My Rituxan will be finished on Feb 14, 2013 and then we will go into the "watch and wait", so it's always in the back of my mind..."when" it will come back. I realize there is no way to predict, but when I hear people have relapsed, I'm always curious how long they they stayed in remission before relapse. My doctor has assured me there are more treatments available in case of a relapse, but I'm hoping I'll get to go more than a few months free and clear of doing any new treatments...(praying for years)!! Anyways..."Welcome to the group" and I hope you will continue to post and keep us up-dated on your progress and care. Best wishes...Sue (age 61)
I am finally figuring this site out. I realize that I am a little late in commenting but myi husband and I just read your story very recently. We do hope you are doing okay. My husband was diagnosed July'11 with MCL. He was treated with bedamustine/rituxan to begin with and after 5 months was and continues to be in remission. We are contemplating a SCT but your story and others have given us a lot to think about. It is such a dilemna. We just hope you are making some progress, I know we all hope that for you. Our thought are with you and your family, Becky and Bill0
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