Search the Community
Showing results for tags 'pci'.
Hello Lungevity Forums, my name is Michele. I was diagnosed with limited SCLC on June 15th 2018 and finished chemo/radiation August 31, with a near complete response. I had a very difficult time with treatment and as a result my oncologist is not recommending PCI (prophylactic cranial irradiation) but my radiologist is advising that I do. I’m terrified of further radiation and the permanent side effects. Im meeting with another hospital next week for a second opinion regarding PCI and welcome any thoughts, opinions or experiences here on the matter. Thanks for listening.
Today I completed the final 5 days of my 10 days of PCI , a preventative step to reduce risk of brain Mets associated with Small Cell. This is a low dose whole brain radiation (25 Gy in 10 fractions (2.5 Gy per session) treatment. My last 5 days/treatments have been nearly as uneventful- as the first five. The fatigue picked up in week two and skin redness/irritation on neck & head extended to my face. I managed this and continue to manage this using Aloe Vera, Aquaphor ointment spray and Bag Balm skin moisturizer interchangeably. I went from sleeping 6.5 hours a day in week 1 to 8+ hours in week 2. Also my dose of Memantine doubled this week (1 5mg pill 2x per day) with no increased side effects. My dosage will increase again in the coming week (week 3) and then drop back in week 4, after which the medication will be discontinued. My hair is intact at the moment, but I’m told it’s going at some point soon (it actually got off to an early start in my 30’s) Midweek, a CBC was taken to measure any effect on WBC count (expected to be minor) I continued my daily brain exercises through Lumosity, and online tests/exercises through Cambridge Brain Tests. While early in the process, I have not experienced any short term memory related side effects, balance issues etc but will continue to monitor that. My next follow up with Radiation Oncology will be May 1 (6 weeks) , following my first set of new tests since NED (PET/CT -Skull to knees) and Chromogranin A (CgA) neuroendocrine Tumor marker (serum) & CBC , scheduled for 4th week of April. - I think the wait between NED and new tests is the most anxiety laden - Once again, happy to answer any questions about this, my SCLC diagnosis, treatments etc.
Today I completed the first 5 days of my 10 days of PCI , a preventative step to reduce risk of brain Mets associated with Small Cell. This is a low dose whole brain radiation (25 Gy in 10 fractions (2.5 Gy per session) treatment. Prior to beginning treatment, I received comprehensive brain imaging via MRI (standard and custom views/slices). The rationale for this was twofold. 1) Give me more information to support my decisioning process (I.e. do or not do PCI) and 2) ensure no existing Mets were detected and if so be positioned to start stereotactic radiotherapy (targeted vs. whole brain radiation). My MRI came back clean (no Mets detected) which was a relief. One area of concern even with this low radiation dosage is the risk of neurocognitive impairment over time (decline in short term memory is frequently mentioned). There are a number of studies that have looked at this, and my Radiation Oncologist reviewed the pros, cons, risks, and rewards to having PCI. She also offered (if i chose) to prescribe Memantine to be taken during and following PCI treatment (not permanent). This drug (which is more usually associated with Alzheimer treatment) is said to help support memory, awareness etc., and has been used in some clinical trials with some positive indications. So with all that I elected to have PCI with Memantine included as part of my treatment. My first 5 days/treatments have been fairly uneventful- some moderate fatigue, periodic sour stomach (lasts a couple hours after taking medication), and some skin redness on neck & head. I was advised to reduce the running/jogging and weight lifting portions of my exercise during treatment and get as much rest/sleep as possible, which I’m doing. P.S. I am also doing daily brain exercises for lack of a better term. The free version of Lumosity, and online tests/exercises through Cambridge Brain Tests (also free when you set up an account) are among some tools I’m using to exercise my brain. Getting some brain drills in place will I believe help me as I go through this treatment and whatever else may come my way in the future. Plus they’re a lot of fun, and you can track your progress. Im grateful PCI was an option for me & hope this information may be helpful to others. Happy to answer any questions about this, my SCLC diagnosis, treatments etc.