The Journey Continues - a plan for a plan -- 9/2/2025

I just met with my Medical Oncologists, Drs Costa and Carradonna, and we have a plan for the treatment plan.

On Monday 9/8 I meet with the Brain Tumor Clinic and they decide how much radiation I will need, it will be 1, 3, or 5 consecutive weekdays of radiation to kill any remaining cancer cells that the brain surgery didn't remove.  Once the number of treatments is determined they will schedule them as soon as they can, but it will need to be at least 2 weeks after my brain surgery (which was 8/28). Once the radiation is completed, I will need 4 weeks for the brain to heal from the radiation before I can start systemic immunotherapy. During that time, I can schedule an Ophthalmology exam for the clinical trial requirements as well as new CT scans, MRI scans, blood tests, etc which have to be completed at most 28 days before the clinical trial begins. 

If I didn’t try for the clinical trial, the timeline would be essentially the same so it won’t delay the start of my systemic immunology treatment, so I would rather apply to be in the clinical trial to advance medical science (and maybe get a shot at a new, powerful, anti-cancer drug!)

So, it looks like I’ll be getting my first immunotherapy (Pembrolizumab/Keytruda) infusions (and maybe Dato-DXd) around the middle of October and they will repeat every 3 weeks for 2 years unless I have to stop due to overly severe Adverse Effects.  My oncologists also said it is better not to get a port for infusions unless you really need it, that IVs are safer.  I will be having periodic CT and/or MRI scans over the next month so if there are extensive new metastases, they will detect them and take appropriate action.

I’ll let everyone know how the Brain Tumor Clinic goes next Monday and when they actually schedule my radiation treatments, but at least there is a plan on the table, and I feel great and I’m still quite positive and optimistic about my long term survival!!



Comments

Post a Comment

Popular posts from this blog

Detour -- abdominal surgery and loss of left leg mobility

Image
 Last Saturday 5/2/2026, at 10:30pm, I had the worst pain I had ever experienced  My belly was extremely bloated and very painful so Yas checked me into the ER and I got IV morphine. On Sunday at 4pm 5/3 I had abdominal surgery to cut out a 20cm section of my small intestine with a big hole in it. It’s not clear what caused it.  I wasn’t allowed eat or drink anything until my intestines started to work again by passing gas, which just barely started after 9 days on 5/11. We don't know the cause of the perforated colon, but tissue samples have been sent to the lab. I've also lost motor control of most of my left leg, so I'll be transferred to Spaulding Acute Rehab hospital next week to regain my mobility.  I can pivot on my good leg to/from my bed and a commode or chair. We also don't know the cause of the mobility loss but its probably brain inflammation similar to last year. They detected some AFIB episodes so put me on another medication and will have me wear a hea...
Read more

An Unexpected Journey and a PSA - 7/27/2025

For those who have known me more than 30 years, you know that I was a heavy smoker (a pack day from age 15 to age 40) but I stopped 30 years ago before my daughter Caitlin was born. The old policy was that if you stopped smoking more than 15 years ago, then your risk level for cancer was the same as for non-smokers. Last year, the policy changed and anyone who smoked a pack a day for 20 or more years is advised to get an annual low-dose lung cancer CT scan. If you smoked heavily for 20 or more years, I *strongly* encourage you to get an annual low-dose lung cancer CT scan. It is inexpensive and can literally save your life! When caught early, lung cancer can be cured with radiation and/or lung surgery quickly and easily, with no need for chemo-therapy! I had such a scan in April and it detected a nodule in the right upper lobe of my lung. A robotic bronchoscopy (so cool!) got a biopsy sample which was confirmed to be cancer (adenocarcinoma). A PET scan (also amazingly cool) indica...
Read more

Coasting toward remission

Image
  I met with my main oncologists today, Drs. Costa and Caradonna, and we reviwed my medical history and made a plan.   My brain MRI came back with no new mets and some of the lesions have shrunk.  My LFTs dropped (by about 50%) today.  They are still quite high but moving rapidly in the right direction. I have an appointment with my hepatologist on March 5th and if the blood tests are close to the normal range then they'll start tapering me off the CellCept and Prednisone, and I'll only be on my anti-seizure medication Kepra, which I can stop taking in May. We probably won't do any more Pembrolizumab (Keytruda) infusions; partly because I had a Stage 3 adverse effect as my immune system has been attacking my liver; and partly because it seems that the Pembro has trained my killer T-cells to effectively kill my cancer cells, so I don't need any more immunotherapy at this point. From now on I will just be getting CT and MRI scans every two months and we hope (and ...
Read more