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

Max Former Hodgkins Stage 3 said:

Assumption

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

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 said:

lindary

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

 

 

 

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 said:

:-(

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!!!!!!

 

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.