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SUV number of PET Scan

sanaesmiracle's picture
sanaesmiracle
Posts: 5
Joined: Dec 2017

This is my first post here.

I was diagnosed Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver Stage 4 in May 2017. I only had weeks to live, but I complete 6 rounds chemotherapy of Epoch. I feel much better now. I took PET Scan (this is my third PET Scan) after the last chemo - six weeks later.

All the result are as below :

  • April 27: Tumor size: 138mm x 82mm. SUV max 35.6
  • July 5: Tumor size: 57mm x 35mm. SUV max 2.4
  • November 8: Tumor size: 35mm x 32mm. SUV max 4.0

As you can see Tumor itself went down so much, but SUV went up since July so my oncologist said the normal limit of SUV is 3, so when I took PET Scan in July it was already within a normal range, but it went up to 4.

Now 4 isn’t a very high number, and it could mean two things: either the Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin in my liver is very aggressive and it hasn’t been completely eradicated (yet), or it’s simply inflammation. Inflammation can produce higher than normal SUV numbers. In order to find out and make sure I must get another biopsy. Ugh...I do not like liver biopsy because of pain after the biopsy.

Anyway, does anyone heard about SUV went up and it was just "inflammation"? I am concerned and scared.

I appreciate your supports!

Love, Sanae Suzuki

ShadyGuy
Posts: 407
Joined: Jan 2017

I tend to think a 1 point increase doesn’t mean much, but I am not a doctor. Were all the PET scans done in the same facility using the same machines and evaluated by the same radiologist? Goldens are wonderful companions!

sanaesmiracle's picture
sanaesmiracle
Posts: 5
Joined: Dec 2017

ShadyGuy, Thank you for commenting.  Lumi (she is one of my dogs) is a really sensitive dog and feels when I am in pain and feel sad.  All my animal family (dogs and cats) is helping me so much! 

Anyway, the second one and third one were done at the same place. I am not sure if they were evaluated by the same radiologist. I think my oncologist is concerned that my SUV was 2.4 in July so that was normal, but it went up to 4 last month so it might be the sign of relapse.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

The huge reduction in tumor size can only be good Sanae.  Your oncologist will asdvise you accordingly.

Dogs are indeed extremely insightful and read human emotions with great accuracy. They also can sense human sickness and are a comfort to humans in many ways: Emotional, blood pressure, depression, and a host of others.  Cat also are proven to know when humans are very ill, but they of course tend to be more aloof and less comforting.

Many animals mourn in a formal sense: dogs, elephants.  May your dog bring you comfort.

max

sanaesmiracle's picture
sanaesmiracle
Posts: 5
Joined: Dec 2017

Max,

Thank you for your comment. I have also cats and they comforting me too especially when I am laying down they lay down next to me.  I have had bad pain last night and this morning over my liver so I am concerned. I think I will ask to this next work if anyone had Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver.  I have no lymph showing any tumors and I never met anyone has this type of Lymphoma "only liver".

ShadyGuy
Posts: 407
Joined: Jan 2017

Your case seems very unusual. Have you had a second opinion? Has more than one lab looked at your biopsy?

sanaesmiracle's picture
sanaesmiracle
Posts: 5
Joined: Dec 2017

I found one doctor in Boston had treated this type of cancer and when I contacted his office they requested to get a refferel letter from my oncologist. At that time I had my first oncologist, but he did not want to write the refferel letter and told me that just send my medical record when I asked. I had a few more difficult situation with this oncologist so I was able to find a new oncologist and I like her. She told me when I met her first time that the tumor was taking over 90% of liver so I only had weeks live so I had to go chemotherapy right away. I know it is very rare cancer and am planning to post it to ask as title of  Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver soon.

ShadyGuy
Posts: 407
Joined: Jan 2017

I have had several people pass away in the past two years but none affected me as much as when the oldest of my dogs (Boston Terrier/Pug mix-35 pounds) died last March. I was devastated. He was my constant and loyal companion. He knew when I was sick and keyed right in on my emotions. When I had splenomegaly he would kiss me on my swollen left side. When my Mother died he mourned. He died with grace and dignity to the very end. My current dog, (a Frenchton - 30 pounds) is becoming the same way. It would be a dark and gloomy world without our animal friends. Some of the very best people I know are “real dogs”. I also have 3 cats but really don’t relate to them in the same way. One is 20 years old and has dementia. She is a real sweetheart. All my very best to you. Wish I could answer your question. My advice would be what my Mom said to me. “Live in the present for the future belongs to no one”.

sanaesmiracle's picture
sanaesmiracle
Posts: 5
Joined: Dec 2017

When my second service dog, Kula (golden retriever) died last year in August I was so sad and grieving so much. She was always there for me before I got  Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver I had a near-death-experience car crash and I was in a coma for three days. I was told by doctors that I would never walk, but she helped me so much and I started to walk and 15 years later I became a yoga teacher. I still have PTSD from the car crash so I was training my other dogs to be my service dogs, but I got sick this year so I do not have my service dog right now, but they are all so good for me and helping me to heal again.

I love what your mom said. Thank you for your support!

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