May 19, 2012 - 4:41 pm
Updating how my UPSC disease is progressing and treatment choices I am making. I had responded in rather great length to our fellow UPSC sister Bonniep in regard to her ‘freaked out’ post – freaked me out too! Since then I have been experiencing what to me seemed like possible symptoms of cancer advancement that was getting quite concerning. So while waiting for the planning to be done for a one-shot stereotactic radiation to a spot on spine, I opted to return Thursday to my gyn onc letting him know I was not handling the waiting game well anymore and had serious concerns of cancer advancing too far to respond to any chemo option. His response was that at this stage it makes no difference how soon we start, it is dependent on whether or not there are symptoms that are interfering with QOL. The tumor load is not the issue, as was my concern. Also, the sooner I start, the more I expose the cancer to a chemo to which it can develop resistance, so early is not necessarily better.
Symptoms I was dealing with that were new were a late afternoon extreme fatigue which would be followed chills and a low-grade fever as I had experienced the day I was admitted to the hospital for Easter (due to incidental finding in ER of extreme low sodium level which could indicate brain mets). The fever was self-limiting, usually gone in an hour or so with no intervention but rest. While in the hospital with the unexplained fever and low sodium issue, it was noted that the fever could be an effect of tumor advancement and toxins being released into blood stream. No cause of fever was found despite extensive work-up. MRI of brain with contrast was normal – yeah! Then I started noticing what I thought was a fat pad developing over my pubic bone – this seemed odd and I wondered if it was related to my recent treatment with tamoxifen. But then I noticed it tended to disappear by morning. As days passed I noticed a late in the day fullness on the left side of my abdomen only, then it began extending into my left thigh, and then even down to ankle. I did not have extensive lymph node removal during debulking surgery since it was already presumed I was Stage IV from PET scan showing hot spot in spleen. Gyn-onc just did sampling of 8 nodes, 2 ea from 4 areas. So I did not think this could be lymphedema. As well, recent scans showed size reduction of a single enlarged node in that area. My gyn onc is not sure this is ascites developing – my concern – but due to unusual distribution/presentation is lymph system related. My increasing fatigue had already had me give up most of my activities and I told him all I had left to do was sit and think about the cancer – and that was not much QOL! PET/CT in Feb noted first organ involvement in lungs and liver. May PET/CT showed advancement while on conservative tamoxifen regimen however most lymph nodes had reduced in size. Makes one more aware of heterogenous nature of mets – could be some cells responded, others not. He had me get worked in to start chemo the following morning. I am to do single agent carboplatin every three weeks as blood counts allow. I cancelled the planning for radiation to possible T2 vertebra spot as Rad onc not convinced it was my most pressing issue since spot did not light up on PET and was a sclerotic lesion (on outside of bone, not lytic – eating into bone).
My journey with this disease most likely began in 2005, but was not diagnosed until I was Stage IVb by fall of 2007. I had debulking surgery in Jan 2008 and have been dealing with recurrences since 2009. For an aggressive cancer such as this I feel I have actually had a pretty good run. For that I am thankful and still take every day as a gift! I have found it helpful myself to read of others experiences so thought I would share what I am currently going through.