FNHL Relapse after Rituxan.

Unknown

just wondering who among you may have relapsed after Rituxan monotherapy followed by Rituxan maintenance. Maybe GG? Would like to know what follow on therapy you selected and why. Would especially like to talk to someone who may have chosen to repeat the R only therapy and how that worked for you.

illead

Hi GKH

I think you know that at his appt. the day before his last maint infusion, Bill's onc told us he had relapsed.  With MCL though, that is part of the monster.  He was given the new target drug Ibrutinib, just off of trials for MCL as they had nothing other than temporary fixes.  That was in Feb 2013 and he went right back into remission and has stayed there.  Just got his last report last week.  I do not know if they have made any progress for use of Ibrutinib in other lymphomas yet but one of the posters here, Joe Costello, who has MCL is or will be going into clinical trials for 1st line treatment of Ibrutinib for MCL followed by, I believe Hyper C-Vad.  This is being done through Dr Michael Wang (on the research team for IB) at MD Anderson.  So possibly they know a lot more about IB or other things for Lymphomas, they are always working hard on it and very dedicated.  There is always good and encouraging info on the Lymphoma Research Foundation website (lrf).  You can go to our personal page if you want to read a little more.

Becky

Unknown

illead said:

Hi GKH

I think you know that at his appt. the day before his last maint infusion, Bill's onc told us he had relapsed.  With MCL though, that is part of the monster.  He was given the new target drug Ibrutinib, just off of trials for MCL as they had nothing other than temporary fixes.  That was in Feb 2013 and he went right back into remission and has stayed there.  Just got his last report last week.  I do not know if they have made any progress for use of Ibrutinib in other lymphomas yet but one of the posters here, Joe Costello, who has MCL is or will be going into clinical trials for 1st line treatment of Ibrutinib for MCL followed by, I believe Hyper C-Vad.  This is being done through Dr Michael Wang (on the research team for IB) at MD Anderson.  So possibly they know a lot more about IB or other things for Lymphomas, they are always working hard on it and very dedicated.  There is always good and encouraging info on the Lymphoma Research Foundation website (lrf).  You can go to our personal page if you want to read a little more.

Becky

Thanks Becky

that is certainly on my list. My goal is to save the big guns till there is no other reasonable alternative.

Max Former Hodgkins Stage 3

unknown said:

Thanks Becky

that is certainly on my list. My goal is to save the big guns till there is no other reasonable alternative.

Analogy

GK,

I'm glad Becky has a potential lead for you. I hope it or some other new drug developments are available.  Strategy is more fundamental in these fights than most people realize.

While prostate cancer is very unlike lymphoma and is treated differently, I see one commonality.  Although Stage 4 prostate is considered never curable, there are numerous pallative drugs that extend life, sometimes for decades. One is Hormonal Therapy, and the last is chemo (chemo is only used against prostate Stage 4, and is usually the last hurrah, so to speak).  I mention this because doctors play the treatments usually one at a time, and do not change therapies until the one in current use has lost all of its usefulness. The idea is that the subsequent drug(s) will have a finite efficacy also, so delay beginning them as much as possible.  It is a poker game of course.

Wishing you a winning hand as always,

max

Unknown

Max Former Hodgkins Stage 3 said:

Analogy

GK,

I'm glad Becky has a potential lead for you. I hope it or some other new drug developments are available.  Strategy is more fundamental in these fights than most people realize.

While prostate cancer is very unlike lymphoma and is treated differently, I see one commonality.  Although Stage 4 prostate is considered never curable, there are numerous pallative drugs that extend life, sometimes for decades. One is Hormonal Therapy, and the last is chemo (chemo is only used against prostate Stage 4, and is usually the last hurrah, so to speak).  I mention this because doctors play the treatments usually one at a time, and do not change therapies until the one in current use has lost all of its usefulness. The idea is that the subsequent drug(s) will have a finite efficacy also, so delay beginning them as much as possible.  It is a poker game of course.

Wishing you a winning hand as always,

max

Know when to hold em, know

Know when to hold em, know when to fold em? My approach will be to use my Drs. as consultants but ultimately decide for myself on further treatment. I also place a really high value on the opinions of other patients with FNHL. Right now my nodes are very small. I think it might be wise to wait, let them grow, and get a biopsy before further treatment. I will talk to my onc in about 2 weeks and get his opinion on that. I feel well, in fact the best I have felt in years, and I want to take advantage of that as long as possible. For now FNHL is incurable, so I will play the game and drag it out as long as possible with the least damaging treatment options. A cure may well show its face in the next few years. Most people I know in the medical profession are very optimistic about a cure for FNHL Or at least its relegation to a nuisance/chronic condition similar to diabetes.

allmost60

unknown said:

Know when to hold em, know

Know when to hold em, know when to fold em? My approach will be to use my Drs. as consultants but ultimately decide for myself on further treatment. I also place a really high value on the opinions of other patients with FNHL. Right now my nodes are very small. I think it might be wise to wait, let them grow, and get a biopsy before further treatment. I will talk to my onc in about 2 weeks and get his opinion on that. I feel well, in fact the best I have felt in years, and I want to take advantage of that as long as possible. For now FNHL is incurable, so I will play the game and drag it out as long as possible with the least damaging treatment options. A cure may well show its face in the next few years. Most people I know in the medical profession are very optimistic about a cure for FNHL Or at least its relegation to a nuisance/chronic condition similar to diabetes.

Hi,

 My last round of Rituxan was in January to shrink a tumor on my elbow, and it worked 100%. I did one infusion weekly for 4 weeks. I have a 6cm tumor in my Paratracheal node we have been watching since April 2014. It started at 2.3 cm and has steadily grown, but I feel fine, so have done the "watchful waiting" routine, and will continue until my doctor says not to, or my health gets bad. I have my next CT scan Sept 28th, so will see how much more it has grown. I feel like you...save the big guns for later. My doctor told me she will probaly do Rituxan with Bendimustin(sp?) to shrink my chest tumor, but not until absolutely necessary. We will see. I'll let you know after Oct 1. when I have my appointment with my Onc. I'm just grateful my cancer has not gotten aggressive, even though it's come back in 4 new places since finishing my R-Maintin 2013. Take care, and best wishes...Sue

illead

allmost60 said:

Hi,

 My last round of Rituxan was in January to shrink a tumor on my elbow, and it worked 100%. I did one infusion weekly for 4 weeks. I have a 6cm tumor in my Paratracheal node we have been watching since April 2014. It started at 2.3 cm and has steadily grown, but I feel fine, so have done the "watchful waiting" routine, and will continue until my doctor says not to, or my health gets bad. I have my next CT scan Sept 28th, so will see how much more it has grown. I feel like you...save the big guns for later. My doctor told me she will probaly do Rituxan with Bendimustin(sp?) to shrink my chest tumor, but not until absolutely necessary. We will see. I'll let you know after Oct 1. when I have my appointment with my Onc. I'm just grateful my cancer has not gotten aggressive, even though it's come back in 4 new places since finishing my R-Maintin 2013. Take care, and best wishes...Sue

Nice salmon

I'm so jealous.  It is so good to hear from you and to know that you are doing well and optimistic.  We know you have had a fairly rough year but also know the river and fishing are giving you lots of positivity.  Bill says there are only 42 salmon compared to last year's 482 coming up the Yuba River.  Our fishermen are not too happy, the rivers are sooooo low.  Send rain!

My best to you, Becky

Unknown

allmost60 said:

Hi,

 My last round of Rituxan was in January to shrink a tumor on my elbow, and it worked 100%. I did one infusion weekly for 4 weeks. I have a 6cm tumor in my Paratracheal node we have been watching since April 2014. It started at 2.3 cm and has steadily grown, but I feel fine, so have done the "watchful waiting" routine, and will continue until my doctor says not to, or my health gets bad. I have my next CT scan Sept 28th, so will see how much more it has grown. I feel like you...save the big guns for later. My doctor told me she will probaly do Rituxan with Bendimustin(sp?) to shrink my chest tumor, but not until absolutely necessary. We will see. I'll let you know after Oct 1. when I have my appointment with my Onc. I'm just grateful my cancer has not gotten aggressive, even though it's come back in 4 new places since finishing my R-Maintin 2013. Take care, and best wishes...Sue

Thanks

i appreciate and highly value your input. Strange but one of my swollen nodes is in my left elbow too! On the inside near the back. I am so glad you are feeling well. I think time is on our side!

i have had a wonderful summer which started with a 2-week Alaska trip. My brother came along to do the heavy stuff and drive the rental motorhome. It was very pleasant and restful. The hardest part physically was the plane there and back. Just had a new grandson in mid August and have a grand daughter due Oct. 1. 

Best wishes and thanks again.