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Relapsed NHL-Rituxan Maintenance or Stem Cell?

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

I recently was diagnosed with a relapse of NHL (diffuse large B-cell/aggressive). 4 years ago I was treated with R-CHOP and now they are giving me DHAP since I had a bad experience w/ RICE. After two treatments-I am presently in total remission My primary oncoligist (the Dr. who treated me 4 years ago) has recommended that I have an Auto Stem Cell transplant- HOWEVER a specialist who I have gotten a 2nd opinion from believes that the best treatment option for me right now is to have the collection ONLY (harvest and hold) and then go on a maintenance program of Rituxan once every 2 months for two years. I'm not sure which is the better way to go. Anyone been in a similar situation?

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Welcome Danco_man,

Sorry you have relapsed. You will find wonder caring and supportive folks here.

I recently finished R-EPOCH for diffuse large B Cell lymphoma my first
and hopefully last treatment. Mine was primarily in the small intestine
and mesentery area.

Regarding your question, I thought Rituxan maintenance was used primarily
for indolent (slow growing) lymphomas - I could be wrong. The advantage of
going the Rituxan route is you buy time before having to go through a
stemcell transplant.

I don't have experience with your exact situation but hopefully someone
will chime in here soon who does.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺☺☺
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Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Jim- Thanks for your feedback..also for your support.

As far as Rituxan maintenance being used mostly for indolent lymphomas...you may be right. I've been doing searches all over the internet on this and haven't found many cases where this treatment is being used for aggresive NHL patients. Maybe that's why my two Dr's are not in agreement re: treatment options?

After my relapse and two regimens of chemo...I was told that I am now in complete remission and considered to be somewhere in the middle (intermediate?)-as weird as that sounds??

My real question however re: Rituxan maintenance vs. SCT is...which is the better option for cure or long term remission? I realize everybody's situation is different but does anyone know if the odds for success get less if I were to have the Stem cell collection ONLY now and the transplant later-after a possible 3rd relapse-should the Rituxan 'not do the trick'?

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Danno-man,

I just started a reply to you that just disappeared from my screen. It may show up when I close out, who knows!

I was diagnosed with DLBC NHL stage IV in 06/2010. I had 6 rounds of R-CHOP and went into remission for a year. A few weeks ago, I relapsed with the same diagnosis and stage. I will have my second round of RICE later this week. I plan on having an auto SCT following the stem cell collection. In my case, I think it will offer me the best chance of the longest remission. Age may be a factor, I'm 52.

I'm curious as to why you would collect and hold. Hold for what? It is my understanding that the transplant should be completed while in total remission. If there's another option, I'd like to hear what it is! Thanks!

Kellie

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Kellie,
Just wanted to say good luck this week with your second round of RICE. Hope you are handling it ok. My thoughts and prayers are with you friend. Take care...Sue (FNHL-2-3A-6/10)

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Thank you Sue.

RICE is tougher than my R-CHOP was. My hair started falling out on day 14 following my first chemo day. I've had one transfusion of two units of packed RBCs and one hospital admission due to fever and back pain. I go in twice weekly for labs. The nice part about going in for labs is that they flush and will change the dressing on my trifusion port, if it's the day for it. Today I see the doctor too.

I think of everyone and keep you all in my prayers!
Kellie

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Hi Kellie,

The "disappearing" reply-don't you hate when that happens? Same thing just happened to me. Personally, I don't find this website all that easy to manuever...

Anyway what I started to tell you before disappearing is that you may have some options- short of SCT when DLBC relapses.

Your stem cells are good apparently for 10 years in a frozen state. The chances of a successful SCT is just 40% (according to the transplant experts) and to me those aren't great odds ESPECIALLY considering the risks (not to mention the hassles) involved with the procedure itself (lowered immunities, extended hospital stays, more chemo, etc.). The collection for me is just a "pre-cautionary" measure should the other options not work. Your cells can be 'banked' for 10 or more years-and frankly I'm hoping to never have to use them

Unlike you-I relapsed after 4 years- so by comparison to your situation I guess I would be considered lucky. For me the cure was to have been R-CHOP-but it didn't quite work out that way. (Btw-I'm 62 years old and told I'm in good health).

After doing some research on my own and getting several 2nd opinions- I learned that there are maintenance programs that seem to work for us DBLCers IF you are already in remission. By the sounds of it you are not yet there (total remission)-but when you are (and I hope it happens soon) you may want to check some of the links on the L&L Society website re: your options. Here's one that was sent to me:

http://www.nhlcyberfamily.org/types/dlbcrelapse.htm

BTW- I also had D-ICE- but it caused me to hallucinate (not a bad side effect if you have to have one)- so they put me on something called R-DHAP instead. It (the D-ICE) couldn't have been all that bad because after just one treatment I was in remission (lucky again?).

Good luck...I hope I have been of some help.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Thank you Danco_man.

That's good food for thought. Ihad tried to get into a phase III study but my grade had changed making me ineligible. This med has had an 80% success rate. I will look through my stuff and find the name for you later. Off to the doctors now. Bty, the med starts with an "O" and has been used in Europe. I can see where saving cells may be advantageous, as in saving until this med is available to all relapsed DLBCers

I appreciated your info!
Kellie

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

Kellie; my wifes collection was done the day before they did 6 days hd rice chemo then on the 7th day they put them back in.. yes it did remission but for just over a year and we re back in relapse now and they re recommending treanda/bendamustine.. sct auto is no fun n no gaurentees.. My wife says no way not again.. never.. caregiver..

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

but we had a good friend die last year, 12 months following a failed stem cell transplant. Her particular problem was that she was so sick from multiple chemotherapeutic regimens (multiple failures for Mantle Cell Ca) that her stem cell population was very low, necessitating a prolonged effort to harvest. And clearly the stem cell population wasn't healthy at the time of harvest. She therefore failed to establish a viable bone marrow after transplant, with the usual results.

OTOH, I wonder how long they can reasonably bank stem cells, if they are harvested in advance. I don't know the answers, just have seen some of the problems.

Best regards,

Pat

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

danco i wrote a large piece undr reply to Jimwin just a few minutes go down and find it,, I d have to think twice about sct,, like everything in cancer theres no guarntees on anything and sct is not any more guarnteed then the chemos// caregiver..

cbpgill26
Posts: 68
Joined: Mar 2012

My doc. said retuxin targets a specific thing and is a miracle drug used for both. But I am newly diagnosed and just had one chemo of Chops. Mine bega in the eye. Good luck.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

qckmom
Posts: 2
Joined: Jul 2012

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!

hopenow2012
Posts: 2
Joined: Jul 2012

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.

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

W John's picture
W John
Posts: 2
Joined: Dec 2011

Hey Man, I was diagnosed in June with MCL. I have gone through six infusions of rituxan/treanda and tomorrow I am going for post treatment Pet scan and bone marrow biopsy. The results will bring me the same choices you are facing, hopefully anyway. I would rather use the rituxan as a maintainence and keep the transplant option in reserve.

po18guy
Posts: 245
Joined: Nov 2011

I have my stem cells banked. 95% efficacy after 5 years in cryogenic storage. My NHL (Peripheral T-Cell NOS) relapsed immediately after 16 rounds of EPOCH and GVD. What occurred next was providential. Clinical trial of a new H-DAC inhibitor. It put me in complete response and I remain there through monthly cycle 37. Doctor cites studies that show that those who relapse and respond to a novel therapy receive the same benefit as those undergoing a transplant - but without the dangers and after effects of a transplant. Transplants are tough, still considered experimental, and I do not like that 7% chance of developing yet another cancer. From the WebMD site:

"Severe, often life-threatening infection can develop after a stem cell transplant. You will need to take antibiotics for several months to prevent infection. Your immune system may take 1 to 2 years or longer to recover after a transplant."

Look into the possibility of a clinical trial. The drug that I receive is not chemo, and its aide effects are much milder. I am part of a study which is determining the long-term side effects. Yet, I still retain the option of a transplant if nothing else is effective.

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Thanks everyone for your feedback.

Despite all the info and goood advice I've been getting lately-I have to admit I am probably more confused now than before as to what is the best opotion for treatment given my situation. A definite case of 'information overload'. It's been a real roller-coaster ride these last few days. I think I've probably made up my mind and changed it at least twenty times by now.

I had the collection on Tuesday (they got 10 million of the little suckers in one day) and although I once thought I would not move forward with the stem cell transplant now...I am somewhat leaning more in that direction after speaking further with several specialists and reading more about the alternative treatment options.

Although I still haven't made my final decision-I'm beginning to believe -that having the SCT now and the maintenance later may just be the best way to go. Even though the odds of relapse after transplant are nearly 50% this option would still seem to offer me the best chance to achieve a 'cure'- where the maintenance is all about keeping in remission.

Obviously I'm not looking forward to the extended chemo, hospitalization and isolation not to mention the potential risks of infection and getting other cancers- but somehow I feel that the way I should be viewing this is from the perspective that if there is a chance for a cure I should go for it!

If there is anyone out there who has had a successful transplant (or NOT) after relapse I would love to hear from you. Obviously time is of the essence- since if I move foward with the transplant NOW rather than just bank the cells for possible future use and go with the maintenace I would need to inform my Drs. of my decision in no more than 7-10 days- at least that's what I've been told.

Tough decision and one that I'm still not sure I have FINALLY made...

Dan

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I have Follicular Stage 3 and I had cancer 4 times in 5 years. I had a SCT in June of this year. My hope is to have at least a 5-6 year remission, but my transplant doc said I have a 50% shot at a cure! He said I have a 20% chance of recurrence of my lymphoma and a 4% chance of getting leukemia. Personally I like the idea of a possible cure since I've always been told that there is no cure for indolent lymphoma. He said they've come a long way with research that hasn't been published.

I had my 6 month scan this last Monday and go see the doc tomorrow afternoon. I went and got a copy of the CD and from what I can tell I am still in remission, although I did have some uptake near my esophagus. They mentioned that if called for an EGD will determine what it is. I'm not having any issues so hopefully they won't want to do it. I've had this test before and hated it.

I am feeling good and can't complain about anything. I won't lie, the SCT was hard but doable. I hope this helps.

Beth

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Dan,

When I was originally diagnosed (May 2010) NMZ NHL Stage IV, I had two differing opinions on my tx as well. So I went to Sloan Kettering to see what they thought. They agreed with my doc in Philly and I've stayed with them both ever since, always going to Sloan for that second opinion. The Philly doc and Sloan talk about my case and I feel very confident that I'm in good hands. They also know that if they ever differ I won't hesitate to get a third, fourth .... opinion.

I have not been in your position but I just wanted to add my two cents. I would recommend getting a third opinion on your options and I see that you have spoke to several specialists which is great. (although confusing I'm sure...)

I don't know what you'll decide but I wish you the best- we are here for you. You will make the right decision!

Prayers.

Donna

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Just wanted to update everyone on my decision. After a ton of soul searching, questioning and extensive research on my part and the getting of a '3rd opinion'-I've decided to go for the SCT. I'm being admitted to the hospital a week from tomorrow.

Not sure if this would be considered another opinion since in fact I already had 3 opinions. But what I decided to do in the end was to go back to one of the specialists that I saw initially and asked him to explain why he was recommending that I go with a different treatment option than what my primary Onc was suggesting (the SCT). Rather than simply go into all of own his reasons he asked me a bunch of questions about what Onc #1 had said.

When I mentioned that my primary Doc felt STRONGLY that the transplant was the way to go because he knew me and my medical history better than any of the other consulting Docs who were simply looking at my numbers and medical records. When hearing this Onc # 2 did a total 'flip-flop' on me and said that if that was indeed the 'instinct' of an Onc that has been seeing me for 5 years- he himself would agree with that judgement. He then said that if I were to be his primary patient and his instinct was to go with a particular treatment he would most probably be making the same recommendation. The fact that he knew my primary Doc and obviously valued his judgement apparently swayed him to reconsider his position. I have to say it somewhat surprised me at first but knowing now that there is at least a little more agreement amongst the Docs has made my decision a little clearer in the end. Not to say that I still don't have some 'lingering doubts'- but does anyone ever really know with decisions of this type that they will be the right ones? Especially since the odds of 'cure' with the SCT that I've been given are 50/50.

So tomorrow I'll be having a final PET and CT scan to be followed by all the usual pre-transplant tests later in the week. Right now I'm just trying to keep focused- since honestly the thought of the whole procedure still worries me to some degree- but hopefully all will go smoothly.

Thanks again for everyone's advice and support. I'll keep you posted....

Dan

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Dan,
I'll keep positive good thoughts that all goes well for you. You will be busy in the weeks to come, but hopefully you'll find time to drop in and tell us how things are going. Keeping you in my prayers. Sue (FNHL-2-3A-6/10)

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Dan wishing you well, Vinny

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

The best of luck to you Dan! Hope everything goes well for you, sending positive vibes your way.

Sincerely,
Liz

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

has anyone heard from dan,, since december?? good nite..

Susan55
Posts: 16
Joined: Mar 2012

My husband is now facing the same as you a 50/50 decision are you OK?

Rachael1970
Posts: 4
Joined: Aug 2005

I had a stem cell transplant in 2006. They were able to harvest my own stem cells after giving me a research drug from San Diego to increase the production of my cells since them chemo (CHOP and ICE) did not resove all my lymphoma. I still had one reactive large node in my chest cavity. I was on the bone marrow transfusion unit for 3 months after. It was one of the worst things I have ever been through. I went down to 89lbs, sores/blisters all over my mouth, hands and feet. My skin peeled off like I was taking off a pair of gloves and socks. Extremely weak. BUT...I am in remission and i will be celebrating my 6th birthday this summer. If your levels are really good and they can go ahead and harvest your cells then i would tell you to do it. Harvesting the cells is nothing. They hook you up to like a dialysis machine and it is not bad. I hope i was able to answer some of your questions. If i can answer anything else you feel free to holler back!! congrats on your current remission!!
Rachael

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Hi Everyone-

Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

My latest mantra....Be well STAY well,

Best,

Dan

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Hi Everyone-

Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

My latest mantra....Be well STAY well,

Best,

Dan

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Dan,
Thanks for checking back in. I'm truely sorry it's not with better news. As you said though..."this all might be happening because of a viral infection, or something else", so maybe that will be the case. I've often wondered how your SCT went and how you were doing. I've not had one done..(yet), so I can't be of any help with your question...someone will know the answer, so keep checking in. Please share back as soon as you get both of the test results confirmed. Try to stay as peaceful as possible..I know.... easier said than done. UGH! You are in my prayers and I'll be thinking good positive thoughts that it's an infection or something simple to solve. Best wishes...Sue (FNHL-2-3A-6/10)

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Dan,
Really sorry to hear that you may have a relapse again Dan. Man the things that you have gone through I can't even imagine! Don't loose faith and hang in there! I will be hoping for the best for you. Take care of yourself and please let us know what the doc says. (((Hugs)))

Sincerely,
Liz

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

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...

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Dan,

I'm so sorry to hear about the relapse - especially
after all you've been through. You're in my thoughts.

Big bear hugs,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

So sorry Dan...I was hoping it was an infection and not a relapse. Keep us posted. Hope you don't have to be in the hospital for long. Best wishes...Sue (FNHL-2-3a-6/10)

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

that really sucks, so sorry to hear that, easier said then done, but keep up the fight, and try to stay as positive as you can! Vinny

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Dan,
Really sorry to hear that it is back! Please take care of yourself and I'll keep you in my prayers that everything goes well for you! (((Hugs)))

Sincerely,
Liz

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

So sorry to hear your news. Praying that the new treatment works and you find Remission. I'm so disappointed for you. Hang in there friend.

Hugs,
Donna

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Danco,

It is very disheartening to hear that the stem cell proceedure failed. Hopefully the r-epoch will work for you. It is certainly at least a possibility. I have a dear friend who has fought prostate cancer for 13 years. The prostate was removed immediately 13 years ago, and he has been through pretty much everything in the book since: Multiple chemos, radiation, hormone therapy, etc. A normal PSA is about 0-4. His results two months ago were a 240 ! He since went on a new drug for pallatative care (not curative, but extends life). His last results were already down to 30, and he is feeling great, with no side-effects. I hope this drug combo will work good results for you.

I had a severe pain in my lower right abdomen/pelvic area last month, and the docs could not find anything obvious, and did a CT. It found absolutely nothing, so they are still baffled. Of course I am profoundly thankful. My point is: Your story is potentially every person's story, so know we are pulling for you.

Max

DadysGirl
Posts: 322
Joined: Aug 2011

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?

cbpgill26
Posts: 68
Joined: Mar 2012

What a burden this is for us all. Continual worry, no pill and better. Pills, tests and on and on. I am new to it and already flailing into mindful hellish thoughts. I am thinking of you. Hugs.

anya_nanda
Posts: 1
Joined: May 2012

Just read all your postings .. my mom recently had a relapsed NHL after just 2 months of RCHOP.She also had shingles and is in quite a lot of pain. The Oncologist recommended palliative therapy but we want to try aggressive therapy so if there is any chance of cure.
Will keep all of you in my thoughts.

God bless!
annie

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Annie,
I'm so sorry about your moms relapse, and getting shingles. Oh my yes...the shingles are very painful! My husband had a very mild case 2 years ago and he was miserable. My grandmother also had them, but her shingles covered her right eye and extended up her forehead and all over her scalp. I hope your mom feels better soon and can start treatment for her relapse. My prayers are with you. Best wishes...Sue
(Follicular NHL-stage3-grade2-typeA-diagnosed June 2010-age 61)

miss maggie
Posts: 929
Joined: Mar 2010

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

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

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)

miss maggie
Posts: 929
Joined: Mar 2010

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

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

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DadysGirl
Posts: 322
Joined: Aug 2011

Danco man how are you doing?

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

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

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

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

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

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,

Jim

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