First Oncology Appointment

Our appointment info pack told us to be ready for a 4-hour appointment but, it turns out, that refers to a typical chemo treatment. Today we were getting initial blood work, meeting the doctor, agreeing on the treatment plan, and submitting requests for the treatment plan. All told, it only took a couple of hours. 

The treatment plan consists of R-CHOP chemotherapy and multiple medications John will be taking at home to either boost his immune system or manage side effects. 

The first chemo appointment will hopefully be within the next four weeks. John must have a baseline EKG, the chemotherapy needs to be submitted to insurance for approval, and have a consult with a pharmacologist to discuss all his medications. Once the EKG is done (hopefully next week) and insurance approves, the first treatment will be scheduled. 

Treatment

Treatments will last about 3 1/2 months which is 6 total chemo treatments.

1. The first treatment will be two consecutive 8-hours days.
2. Subsequent treatments will be every 3-weeks lasting from 2-4 hours.

For this type of cancer and how it is presenting in John, radiation will not be needed.

NLPHL

Like the lab work mentioned, some of the cancer cells from the biopsy are presenting as aggressive which is yet another rare form of lymphoma called DLBCL. The NLPHL is slow growing and very treatable. Throughout the treatment t will be important to see whether the cancer cells stop rearranging themselves.  

Staff

The staff at Duke have been consistently nice and helpful. The online medical chart keeps us up-to-date with almost everything to do with John as soon as it's available. 

Finally

After a year, it's finally good to know exactly what we're dealing with, have a well defined treatment plan, and oncologists, pharmacists, nurses, and nutritionists we can contact directly. I could still be another month before we know how John will handle chemo but at least we're finally on the road. 

Update

Tomorrow will be a very long day. 

John's appointments will be taking place at the Hematologic Malignancy Center since lymphoma is considered a blood cancer. 

The first appointment will, of course, be blood work. Then, finally, we'll be meeting with an oncologist. This should be when we get a full education on NLPHL and a treatment plan. I don't know what else is involved but the pre-appointment information said to be prepared for a 4-hour appointment. 

I'll try to write an update tomorrow.  

Full-Body PET

The main purpose of this PET scan was to find the best site for doing a surgical biopsy since the bronchoscopy lab results were inconclusive. For the most part, this scan didn’t tell us much more than we already knew—enlarged lymph nodes in the chest, lungs, and groin. 

The imaging report did explain some of John’s symptoms. The swollen lymph nodes on his right bronchus is probably contributing to his cough and fatigue. The growths in his right lower lobe are basically collapsing that part of the lung. John’s blood oxygen levels are good; this may be part of what is contributing to his fatigue. 

He’s been having a lot of pain under his left arm but nothing in that area lit up on the PET scan. 

An enlarged node that hadn’t been imaged before appeared under the left jaw. Also a very small lesion in the spleen, which is not really surprising since it is part of the lymph system.