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Chemo done - CT scan done - large nodes found - next?

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I have follicular lymphoma, diagnosed last Dec and R-Chop started in June. I had my last chemo mid-May and the last Rituxan 3 weeks later in June. About 2 weeks ago I had my After Chemo CT scan. Results sent to Dr at Rush to be evaluated. He called me this last Monday to say that some lymph nodes are larger than they should be after the 6 rounds of R-Chop. He is going to update my oncologist and then she will call me so I can discuss what I want to do. One cause that the cells are larger than they should be would be that they have some cancer cells in them. He said there could be other possible causes that are non-cancer. My options are to go ahead and start Rituxan maintenance avery 2 months and after a few rounds do another CT scan to see if they went down. The other option is to have a laparoscopy done now so they can get some cells fro the nodes to see if there is any cell in them. If not I go into the Rituxan maintenance. If there is cancer there, then I will have to get a different chemo.

I am waiting for my oncologist to call me so we can talk but I would like to know if anyone has been in this situation. What did you do and what was the out-come? 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi lindary,

I had lymphoma too. Every patient is unique and has his/her own symtoms, choices, and difficulties. I knew I had a very good doctor, and I trusted him and did what he thought best. I only said that I wanted the most efficient treatment for me in order to have the best chance against my disease, and I got that treatment (autologous stem cell trensplant). I wish you good luck!

Sten

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3524
Joined: May 2012

Lindary,

The most straighforward read of your clinical history is that the r-chop never got you to complete remission.  I would insist that the doctors proceed as if you still have the cancer, until such time as they can prove otherwise. This is the safest way to proceed.  

So many have suffered from the old "Well, it could be a lot of things."  Yea, it could be the gravitational pull of the moon. NOT  !  

The doctors KNOW you have had lymphoma, very recently.  Are they idiots ?  My guess is that you will be doing a second-line/ salvage therapy soon.

max

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I do have confidence on my drs. My oncologist had studied under the dr. at Rush. My PCP is in geriatrics now but had worked in oncology when she was younger. Sorry if I made you think they were idiots.

What I like about my oncologist is she will tell what they recommend and why. But she always makes me feel like it is my choice what to do. That is what is happening right now. My option is to have the laparoscopy to check out the large nodes or just go for a few months of maintenance on Rituxan and then have another CT scan. I was hoping that there was someone reading this board who maybe was faced with this decision and what their experience was. 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

I am sorry you are facing uncertainty right now. I was amazed that you came through your treatments of R-CHOP with such grace. I do want to relay an experience of mine, but I must say I'm a little confused about the doctor at Rush who is advising you. Who is that? The Radiologist? If it were me, I would not try to make any decisions until I talked to my own oncologist.

After I'd had R-CHOP 4 times (I had a total of 8 treatments) a PET/CT scan indicated new uptake in the retroperitoneal area. The radiologist's opinion was, "relapse after treatment". When my oncologist handed me a copy of the report, he cautioned me not to to take that too much to heart. He reminded me that the radiologist was not a hematology oncologist, much less did he know anything about me or my case. 

I was referred to the Bone Marrow Transplant Clinic at Duke University. After further testing, both the hematologist/oncologist I saw there and my own recommended I continue with the R-CHOP which I did. Following was 2 years of Rituxan maintenance. 

My doctor does not believe in excessive scanning because of the radiation exposure. I did not have one for more than 2 years. But my clinical signs were good, my blood labs were good, and I felt good. My post Rituxan maintenance CT scan was excellent and I even got my port out!

I will be on your side all the way as you continue through your lymphoma journey. 

Prayers and hugs,

Rocquie

 

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Thank you Rocquie. The Dr at Rush is head of Hematology/Oncology. He was my oncologist's mentor when she was at that hospital and I saw him shortly after I was diagnosed. Rush, being a very arge hospital, is one where they have a team of dr from various areas of oncology. They all reviewed my test results and then met to go over their findings. They did this at the beginning and now, after the chemo was done. The Dr. I see there then called me to tell me their findings and he also sent the report to my oncologist. They (the team at Rush) can't tell of the size of the nodes are because they still have cancer or not. Part of me wants to do the laparoscopy just so I know if there are still cancer cells there. Yet part of me feels that if I go on the 2 years of Rituxan maintenance that should take care of it. I am glad for your feedback. It is good to hear form someone who has been through the maintenance and come out good. I have a blood test & port flush on Tues. I'll see what the blood test shows and see if I can talk with my oncologist. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Sorry, I have been away for while and this news is not what I hoped for.  Of course this could be something other than cancer but best treat it as such.  I was first told I was going to do what most seem to be treated with RCHOP but you may recall I went to a specialist in Boston who insisted I only do rituxan.  I'm stage IV grade 2.  The rituxan worked amd I had a great result.  

Just another note, half way through my treatment my nodes went crazy.  They were enlarged and enraged because I was killing them off.  My doctor told me that this sometimes happens.

I haven't seen from them since and hope not to ever again.

 

trust your gut, keep me posted.  Prayers are coming your way!!!!!!

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Some days feel I should have the laparoscopy to find out why the nodes are large and other days I think, let's just do the rituxan and see what it does. What gets me is that these are the kind of decisions I have to make on my job when it comes to some computer problems. I see my oncologist next month so that is when I have to have a decision. Or a list of questions I need answered to make the decision. Based on your comments makes me lean toward just going for the rituxan maintenance and see what the next CT scan shows. 

Other than this I a feeling good. Hair is starting to come back. Busy as all get out at work which makes me feel that things are getting back to a type of normal. 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You will know what to do when the time comes and what is the down side of having the laparoscopy?  How will it change your treatment?  Personally I would like you to endure less radiation from scans, hate The stuff but let's face it we need it at times.

 

 You're smart.  Trust your instincts and listen to your body and take no chances!

 

more later......

Zappymom12's picture
Zappymom12
Posts: 8
Joined: Oct 2015

My husband just completed 6 rounds of FCR chemo.  The lymph nodes are still large in his neck and groin area.  We go back in a month to check his blood levels.  The Oncologist did mention if there was not a good result that more chemo or a bone marrow transplant would be considered.  Thoughts?  Has anyone still had large nodes after 6 rounds of chemo? Is that bad sign?  

 

Thank you!

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I was diagnosed with follicular non-hodgkins and did 6 rounds of R-Chop. The tumor/enlarged node that started the whole thing had shrunk but was still large. So they had me do 3 rounds of RICE and now we are planning stem cell. The actual Stem cell process was supposed have started last week using my stem cells but was postponed when an abnormality was found in the bone marrow biopsy. So now we are going to be looking for a donor. The good news is that the 3 rounds of RICE put the lymphoma in remission. The stem cell procedure is to make sure the lymphoma is gone. Between now and then I will be on Rituxan. 

 

All you can do for now is wait for the tests to find out what they recommend.

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