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Standard protocol for followup?

dtat67's picture
dtat67
Posts: 28
Joined: Oct 2018

Hello, Everyone! I'm getting close to 1 year post-Chemo and Rad for DLBCL Stage 1A (just in right sinus;no lymph node involvement). My routine thus far has been port flush every 6 weeks, blood tests and CT scans (face,stn,chest) every 3 months and Doc visits after scan. I had partial remission after chemo and complete after radiation. So far so good. I have been seeing both my radiation oncologist as well as my hematologic oncologist - I expect my rad/onc to cut me lose tomorrow after my scheduled appt. and the followups will be with the hema/onc from now on. Scans every 3 months for 2 years and then once a year....forever??

Does this sound like the standard protocol for most? I know it's different for different circumstances, etc. just wondered what others were experiencing.

Peace and Love - Dave

Sandy Ray's picture
Sandy Ray
Posts: 112
Joined: May 2017

Well I am sure everyone is different but I was still every 3 months after 2 years and relapsed at 2 years 6 months. The oncologist had talked about moving to 4 months if the 2 1/2 years scan was clear. Well it wasn't so we are in treatment. Please do not think that I am indicating yours will be back. Just letting you know do not count on moving out to 1 year after the 2 year mark. My insurance did make them change from PET to CT though. Glad to hear you are doing so well. I did not get radiation.

Good luck with everything. I know the scans can be a reminder of everything but the earlier they catch it IF it comes back the stronger you will be to face treatments.

I hoping you never see it again! 

Good Luck! Congratulations on your all clear! 

dtat67's picture
dtat67
Posts: 28
Joined: Oct 2018

Thank you, Sandy Ray! Sorry to hear about your relapse. Interesting. I will discuss this my next visit to the Oncologist (tomorrow). I was planning on keeping my port for a while and your comment just shows that none of ever know what's coming to get ya. The fact that they caught it quickly is a good thing. I've only had 2 PET scans - one after Chemo and then one 3 months after radiation (time for inflammation to go down). My CT scans have varied - first a chest, then facial, and this week a STN. Seems they would just do them all at the same time in order to pick up something no matter the area? I think I'll ask about that also.

 

Sandy Ray's picture
Sandy Ray
Posts: 112
Joined: May 2017

I kept port for I think 18  months maybe 24. It was not a huge deal. I now have a PICC line. It requires quite a bit more work to maintain. However I think with this procedure much less total treatments. The port also will not work for stem cell collection. Hope you get the answers you need.

 

po18guy
Posts: 1071
Joined: Nov 2011

Each case is pretty much individual. Yours particularly, since the presentation was unusual. The more frequent scanning is probably due to the fact that your tumor was close to the brain/central nervous system. I had basic systemic lymphoma, but had CT series (head-to-groin) for 7 years at three and then six month intervals. Much of that was clinical trial and long-term study related.

Port? I had one port or another for about 11 years. A Power Port through lymphoma treatment and transplant, then a Vortex port for Graft-versus-Host-Disease treatment. No port now and it feels strange.

dtat67's picture
dtat67
Posts: 28
Joined: Oct 2018

Good to hear from you. Yep, CNS involvement was a consideration by my Oncologist. He initally was going to give me 7 methotrexate lumbar injections because the tumor came so close to my brain. I told him I didn't want it just prophylactically so he didn't give it to me. On one of my recent visits he told me I was right in not getting them because the latest info says that the risk/reward ratio does not show it as a standard practice. I told him it was not because I knew any better I just didn't want it unless it was absolutely necessary. I hope as the years progress I can put this behind me without any more problems but I'll accept whatever. I plan on keeping the port for a while. I had never heard of a vortex port but goggled it - interesting.

☮

po18guy
Posts: 1071
Joined: Nov 2011

Good to see you posting in good health! I had the Power Port for over seven years. After a stem cell transplant, I was scheduled for Extra Corporeal Photopheresis (ECP) to treat Chronic-Graft-versus-Host Disease (GVHD). The Power Port was not compatible with ECP, so it was pulled and replaced with a Vortex Port. After about 1.5 years, the Vortex Port demonstrated signs that it had a terminal condition, so they were pondering its replacement with a "PowerFlow implantable apheresis IV port". Was hoping to be the first one at SCCA to receive one, but that was not to be the case. It was decided that I had received essentially the maximum benefit from ECP, so the port was pulled and not replaced. A very strange feeling not having a bump on my chest, but I'm getting used to it.

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