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Newbie, DLBCL, pet scan clean but.....

Posts: 2
Joined: Oct 2014

First, I'm so glad to have found this site today.  Going crazy.   I was sick for quite some time.  2 yrs or more.  I was also having marriage problems so I thought I was just run down.  I had major back pain, fatigue and chronic sinus problems.  At least that's what 4 Md's, hematologist and a week in the hospital diagnosis was. After not being able to blow my nose and stand to take a shower,  I went back to my doctor again.  Only this time I seen a new doctor who got me referred to another hematologist.  Long story short,  admitted that day.  After bone marrow biopsy,  biopsy of what I was told was a polyp in my sinus cavity, two ct scans and a pet scan.  Diagnosed with Aggressive Stage 3 Diffused Large B Cell Lymphoma.  Started hyper cvad treatment the next week.  After 8 treatments,  pet scan was clear,  but was told they wanted to do 4 more to make sure it would not come back.  Reduced treatment to Repoch.  Did two of those and then my bone marrow would not recover even after shot. Did another pet scan on September 30th.  No Cancer.  Finally,  I could breathe.  Today,  labs still shows ANC only 1.2. I'm thinking ok,  it's taking a long time but better.  Then, I get the dreaded phone call.  Maybe it's nothing,  but I just lost my mother in law a week ago.  She had stage 1 throat cancer,  spot came on her stomach 2 months after she finished treatments.  Two months later,  she's gone.  Sorry to go on,  just worried.  

Rocquie's picture
Posts: 857
Joined: Mar 2013

Welcome to the group. I am so happy to hear that you are in remission from DLBCL. 

I'm not sure I can entirely follow your post when you mention the "dreaded phone call". And please accept my condolences on the loss of your mother-in-law.

It took my bone marrow a long time to recover from 8 rounds of R-CHOP. I stayed anemic throughout my treatment and had many blood transfusions. After the chemo was finished, my blood counts--all of them--remained low for a few months. At one point my doctor said I may need another bone marrow biopsy. (Yikes!) He talked about myelosuppression, a condition in which the bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets. But slowly, my counts came back up and now everything is in the normal range. 

I understand that you are worried. I hope to hear more about you.




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