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Finished Treatment: Evidence of Lymphoma

I've finished six sessions of R-CHOP for large, diffuse B-Cell Lymphoma. I am feeling better but there is evidence that the lymphoma has not resolved, though in May after four sessions there was only one enlarged lymph node in my chest.  Some of my symptoms have resolved:  constant coughing after eating, severe fatigue, pain---but now the pain in the areas that existed before has returned.  My doctor could feel several swollen lymph nodes. I had a CAT scan and a PET scan done today, and I am trying to prepare myself for the results which I will get tomorrow.
Has anyone had a recurrence so soon after treatment or a partial success from R-CHOP?  I am wondering what my options are. I've done some research and clearly my situation is not good. I'm just now a new grandmother, with a granddaughter just fifteen days old, so I am hoping to be around for a little while at least.  Information or advice appreciated!  Thanks! Margot
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907672 tn?1381025723
Wishing you the best with your MRI scan, Lynn.  Failing R-CHOP isn't good, you are right, but keep in mind that there are so many different treatment options available besides R-CHOP.  Your doctor (whoever ends up treating you), has a smorgasborg to choose from.  We're kind of lucky actually because we have the more common forms of lymphoma, which have the most treatment options available.  If one fails then usually there is another to try.    
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Avatar universal
I hope to have an appointment with my doctor tomorrow or at least to talk to her on the phone. I had an MRI today, and I hope to get the results tomorrow. Many thanks for the excellent ideas and suggestions.  I will certainly discuss all of them with my doctor. She agrees that I would need specialized treatment if there are worrisome results on the MRI (she says I should seek treatment beyond what I can get at the Cancer Center where she is located). Failing R-CHOP is not a good thing.
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1081992 tn?1389903637
COMMUNITY LEADER
Hi, I'd suggest the following: identify not a top cancer center but the top docs specifically for DLBCL. Then choose the center where the doc you want is at. However, there is the the matter of getting an appt. But you don't have to actually see that doc, as long as you get the treatment there - that'll be the treatment that doc prefers.

It turns out that patients tend to get the treatment that is preferred by the center that is nearest to them: TX or NY or Seattle or San Francisco, etc.

As you say, the nearest is not necessarily the best for your particular case.

I'd guess they cannot do surgery because of that nerve. But radiation will damage everything around anyway. Did anyone mention if gamma knife is appropriate for you?

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907672 tn?1381025723
It sounds like you are on the right course for treatment, Lynn.  The CAT scan thing is kind of scary.  I usually get those instead of PET scans to monitor my own disease.  I hope the radiation zaps the rest of your lymphoma away so you don't have to continue with more treatment.  

I've heard good things about MD Anderson.  I think you're smart to choose some place that deals a lot with your type of lymphoma.  Good luck and keep me posted.
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Avatar universal
Today, I had my consult at a Texas Cancer Center with the doctor there who specializes in radiation treatment. She told me that she does not know why the CAT scan did not pick up the active lymph node (PET scan did).  Normally, it should because the node doubled in size.  (?)  She says that is why it is so important to have PET scans as part of the evaluation process. She agrees with localized treatment of the lymph node, and says it is "persistent" not recurring.  It just did not go away with the RCHOP.
This is what the plan is:  30 - 45 treatments of radiation, localized in the area where the active node is. Evaluation during and after treatment, and she recommends treatment at a major cancer hospital in clinical trials if this does not resolve. (Your idea confirmed!)
I'm having significant pain (lower back) and so I am scheduled for an MRI on Thursday to try to make sure that the lymphoma is not in the epidural area as well as to get a better picture of the situation.
It seems that the scans, though wonderful tools, are not to be relied on 100%.  
MD Anderson is in Houston, and I am located in Austin, Texas, so I may consider that center, but actually I will choose based on the best possible treatment for my case, rather than convenient location.  I may well ask your help if I need that further step.
Thank you again for your kind help!
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907672 tn?1381025723
I'm so glad I can help.  It really does my heart good to know I'm helping others who are also trying to navigate through this confusing disease.  

I don't know where you live Lynne, but I really urge you to consider going to a research hospital for a second opinion on your treatment, even if you must travel a ways.  Your doctor should not be treating you if he doesn't even know what kind of lymphoma you have.  The researchers at that meeting said the most critical thing before treating a patient is making sure they know what kind of lymphoma they are dealing with.  Most likely the research hospital you attend will want to run their own pathology on you.  That is what SCCA did with me.  Even if they agree on the treatment, atleast it will give you some peace of mind that you are doing the right thing.  If you need some help finding a research hospital near you, let me know and I will personally do some research.
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Avatar universal
You are an angel from heaven :)  Thank you so much for the valuable information.  I think that I should look into other treatments for my situation, and my doctor does not know if it is follicular or DLBCL that has recurred. There are many treatment options, according to the excellent lymphoma site that you referred me to. Thank you so much---this is potentially life-saving information.  
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907672 tn?1381025723
Wow, you have two lymphomas.  Sounds like yours maybe went through histologic transformation as some point?  It sounds like they are going to do localized radiation on you since they only saw evidence of lymphoma in one spot on the PET.  I know that when first diagnosed if it is grade 1, or in a very localized area they can hit it with radiation, but I didn't know they could do that with relapsed/refractory lymphoma.  

You really should check out the Lymphoma Research Foundation's website.  Go to www.lymphoma.org to get there. I suggest going to the "learn" tab and then click on webcasts and podcasts.  These are prerecorded sessions that you can watch and listen to on your computer.  There's tons of information there.  You can also go to the clinical trials section and see what trials are in the works right now.  LRF is the organization who put on this patient conference in Seattle.  They go all over the nation puting on patient conferences.  Many of the top research lymphoma doctors are there to discuss the basics of each kind of lymphoma to help understand the biology of it and then all these treatment options that are in the works.  They also have breakout sessions with different classes that you can choose to attend on several different subjects.  They take a lot of questions from patients and field them right then and there.  We really learned a lot about radioimmunotherapies like Bexxar and Zevlin.  We also went to a class on stem cell transplants.  

The rituxan is great, no side effects whatsoever.  Rituxan doesn't cause you to lose your hair.  Most people sail through it pretty easily since the side effects are so minimal.  

I found out that I had lymphoma after several years of going to the doctor.  It started out as a small lump on my breast.  The doc did a mammogram and said it was nothing.  A year later I got another lump on the same breast.  The doc did an excissional biopsy of both lumps which came back benign.  A year after that, another lump appeared on the same breast.  A punch biopsy was done and came back suspicious for lymphoma.  The lab samples were sent out of town to a big Seattle lab for confirmation, including the samples from my previous biopsy.  All samples came back positive for follicular lymphoma.  Our local, small town lab completely missed the diagnosis on the first biopsy.  As you can imagine, I was a little bitter.  :-)

Keep me updated on how the radiation goes.  Take care!
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Avatar universal
How are you tolerating the rituxan?  Did it make your hair fall out?
I was wondering how you found your lymphoma (were you having symptoms or did it show up on routine exam/lab work?  I'm glad that you are doing so well.
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Avatar universal
Mochadelicious, I have both follicular and large diffuse b-cell lymphoma. The CAT scans that i just had were clear but the problems showed up on the PET scan. There is a lymph node in the right groin area that has doubled in size and is painful. It is active for lymphoma, but the rest of the body appears clear. A bit worrisome is that I have been having pain in some of the other areas where lymphoma was active before, but nothing showed up on the scans.  I am thinking that my radiation treatment is to target the area with the lymph node (problem area).  I am to have a course of treatment and then another PET.  At this point, I know nothing about the radiation treatments other than that they are not painful and do not generally make one feel sick.
What did you learn from the Seattle Conference that is relevant to your situation with follicular lymphoma?  New therapies?   I'm glad to hear that you heard news to make you encouraged!
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907672 tn?1381025723
Hy Lynn,
You are so welcome.  So I'm assuming they found lymphoma on the CT scan.  When you say radiation, do you mean localized radiation or targeted radiation therapy?  I know what you mean by wanting the port removed.  I've had my port for a year and a half now but it doesn't look like I'll get get to get rid of it anytime soon.

I was diagnosed with follicular lymphoma last year.  I went through 6 rounds of R-CHOP chemotherapy every 3 weeks.  Right now I'm in the middle of Rituxan Maintenance every 2 months for two years.  I'm in remission but as you probably know, follicular lymphoma is indolent and typically isn't cured unless caught early.  It's more like a chronic disease that you deal with as it relapses.  I just went to a lymphoma conference today in Seattle and it was awesome.  I'm feeling a lot better about my future and all the treatment options coming down the pipeline, particularly all the targeted therapies.
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Avatar universal
Such great information!  Thank you so much for your reply.
I saw my doctor today and he recommended radiation treatment to the local area where the problem showed up. I should start treatment early next week. I forgot to ask about the course of treatment, but he seemed to think a short course. I'd like to have my port removed, but he said that we should leave it for months longer just in case I need more chemo. I was hoping to have it removed but under the circumstances, I think he is right.
I'd like to know more about your situation and experience with lymphoma. I hope that you are doing well. Thank you again for your response to my concerns.
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907672 tn?1381025723
You know, my lymph nodes in my armpits would swell for a couple of days and then shrink after I finished my chemotherapy treatment.  It was actually kind of painful, but my doctor didn't think much of it.  He said lymph nodes will often wax and wain in size.  My CT scans have been clean in those areas since so I guess it must be true.  I hope the same thing is happening to you too.

As far as who the best specialists are I am sure there are many.  However, I highly recommend going to a big cancer research hospital.  They get a lot of money from grants and foundations to do specific research on all sorts of cancers.  I personally chose to visit the Seattle Cancer Care Alliance, which is about a 5 hour drive for us, but worth it.  I went there twice, mainly for second opinion but I  had my treatments locally.  I saw Dr. Damien Greene, who was incredibly knowledgable.   I also chose Seattle because I know that I may be looking at a stem cell transplant someday and they are the most experienced in the world at transplants.  They were recently ranked #1 out of 122 transplant centers for their 1 year survival rates.  You might check out thier website and see what you think.  It's  http://www.seattlecca.org/.  

Good luck tomorrow and please keep me posted.  
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Avatar universal
Thank you for your reply :)  I got my scan results and would have been shocked if they were clear, due to the problems I am having.  The PET showed lymph nodes in the groin area, and I am having nerve pain in the leg from whatever nerves the node is pressing on.  My immune system is not working well at all. I am having some pain in other areas, and I think that this is residual lymphoma. I read that the scans often cannot detect minimal residual lymphoma. I will see my doctor tomorrow morning and see what my options are.  Do you know how I would find out who the best specialists are?  I had such a hard time getting a diagnosis even with a totally classic case of lymphoma that I have come away from that experience with a wish to find the best possible care.  Since my case is aggressive and the information that I have found reports that when the cancer is not resolved after standard treatment it is a poor prognosis, I am hoping to try to get the best care to increase my chances of survival. Thanks for your information and support!
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907672 tn?1381025723
Hi Lynne,
Welcome to our forum.  I'm sorry to hear all you've been through.  I also have lymphoma (follicular), and went through R-CHOP.  At the conclusion of my chemotherapy there was still a spot on my liver that had shrunk a little but not much.  It's debatable whether this spot is actually cancer since the doctors don't want to do a biopsy...too invasive. (I was told it wouldn't matter anyway since my plan for treatment would remain the same whether it was cancer or not.)  I am currently doing Rituxan Maintenance for two years.  They are keeping an eye on the spot but don't seem overly concerned.  They said if the spot on my liver starts getting any bigger then we'll have to hit it again with a stronger treatment.    

I know your type of lymphoma is more aggressive than my own so they may be more apt to treat you right away if you have any residual disease.  

Please keep us posted on your CT results.      
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