Firstly, thanks to everyone on this board for their insights and stories. They have been tremendous in understanding different aspects of the process.
Late last year I had blood in my stool every now and then but attributed it to the heavy weightlifting I was just starting to get into. In June it started to get a little worse and my GP, who said I most likely had nothing to worry about because of my age(30), referred me to get a colonoscopy. So July 5th I was diagnosed with rectal cancer, many subsequent scans and tests later I stand at T3N2M0 with a high grade variant(not the best news) and a very low CEA 2.3. The MRI and CT scans showed no spread but with some suspicious area in the liver(more on this later). Without pathology they cannot confirm the lymph nodes, which are slightly swollen, are cancerous or just responding to the infection but as we all know with rectal cancer we will just assume they are for treatment purposes.
Standard procedure of 6 weeks of chemoradiation was prescribed and I am in the middle of it with a finishing date of September 7th. Aside from one ER trip for what I thought was some blockage and turned out to be very bad constipation, mag citrate didn't even work at first, I have been in pretty good shape. I have been instructed to take Miralax daily to avoid this in the future, while I have been having a hard time finding the right dose everything is still flowing. Fatigue is now really starting to settle in but it can be managed with naps here and there.
I have a couple questions I hope I can get some perspective on from other members, while different threads contain bits and pieces I was hoping to address them here.
First, I have had very little to no side effects from Xeloda up until this week(week 4).
- I had some pretty bad nausea the first few days but that was addressed with medication(zofran) and I stopped taking it the second week as the nausea never came back.
- I also had a rash the first week on my thighs but I did not know if this was related
- As to the dreaded hand and foot syndrome, I have tenderness when pressure is applied to my hands that wasnt there before but no swelling or cracking. Both my hands and feet are far rougher than they used to be but that seems to go against the syndrome.
My question here is that I have read that both side effects do show its working and side effects dont matter. Is there anyone that sailed through xeloda but had no side effects but a good outcome?
Second, around the radiation(Might be TMI)
- Since the second week I have been battling some bad diarrhea with heavy amounts of mucus in the morning.
- Blood has decreased but my movements have still been "thin" and not bulking up as I thought they would 4 weeks in.
- Constant and I mean constant, at least sometimes, the urge to go number 2 but nothing happening.
With this, similar to the xeloda, I am getting quite anxious that no progress is being made because things seem to be the same or worse in the movement department. Is there anything I can really press my oncologist to do in checking progress instead of just waiting another month with a cancer the is aggressive and prone to spread?
Some insights I have learned to be absolutely true.
The waiting....They say the waiting is the worst part and well it's obviously not but it does seem like this portion is something we cannot control or handle so that makes it seem worse. Waiting to get that plan of action or waiting to start the xeloda pills even though you have them can be torturous. Like everyone else will say you have to find something else to do but I would suggest try new things at this point, its easier to lose time finding new things you love than older things that you will need to rely on later.
Liver Lesions...I had a "spot" on my initial CT, anxiety at 11 ensued. I cannot count how many times I searched for what "low density lesions on the liver mean" and read the same answer over and over and over. Sometimes this helped sometimes it doesn't. My follow up MRI findings were fantastic stating the most likely are simple cysts based on their structure, sure this doesnt mean they aren't cancer without a biopsy but each person is different.
Age 30, Male
07/05/18 - Colonoscopy, T3N2M0/Stage IIIB Rectal, MSS and High Grade
09/10/18 - 28 Days Xeloda/Radiation
10/11/18 - MRI decrease in Tumor & Nodes
11/19/18 - lAR
12/06/18 - Bad news, Surgery margins inconclusive, 17 of 19 nodes, PNI & LVI
12/09/18 - Bad news, 2 spots on liver and 1 on Lung, XELOX start
02/15/19 - Good News! Lung spot gone, Liver Spot down to 1, Nodes shrinking.
06/15/19 - bad news! Rectal recurrence and node increase
07/01/19 - folfiri
08/23/19 - surgery consult unc