ginabeewell wrote:PET scan confirmed new activity. Chemo will restart, probably Monday assuming Dr Stein can get in touch with Dr Kemeny by then. Dr Stein says 4 rounds, then scans to assess next steps. No talk of surgery even when I asked; don’t know if that’s driven by Covid or something else. Ugh.
That’s the same test that was positive for me: the anti-CCP test. The RA screen was negative. So you may have experienced the same thing: your body mounting an immune system response to early stage colon cancer. Oh also I read that MRI would be negative for RA in a case like this. Crazy right?! But I’m choosing to think of it as a sign of my body’s natural power. I could never shake the feeling that the pain was related to my cancer; but I guess I assumed it was the treatment vs the cancer back itself. So fascinating.
rachelfromnyc wrote:I also had an autoimmune condition going into my cancer diagnosis. As I was trying to understand how this cancer could have possibly happened since I don't have the typical risk factors (I'm under 50 years old, active/not overweight or anything and in general, have good habits as it relates to nutrition, etc.), I began to suspect the autoimmune disorder and cancer were related. However when I asked my oncologist and rheumatologist, they both said there's no link. As an aside, when I asked the oncologist how long the cancer had been growing, she said 10 years which lines up exactly with my autoimmune diagnosis. Go figure. Anyway, I didn't pursue it anymore but I often wonder how many cancer patients go in with a pre existing autoimmune condition since treating autoimmune diseases consists of immunosuppresants/other immune modulating drugs.
ginabeewell wrote:I was all set to start chemo at NW, but Dr Kemeny put a pause on it; she wants to see the scans herself to be sure it’s new activity. I guess this is her process, and it’s worked for her thus far. One more week of normalcy...
rachelfromnyc wrote:
I also had an autoimmune condition going into my cancer diagnosis. As I was trying to understand how this cancer could have possibly happened since I don't have the typical risk factors (I'm under 50 years old, active/not overweight or anything and in general, have good habits as it relates to nutrition, etc.), I began to suspect the autoimmune disorder and cancer were related. However when I asked my oncologist and rheumatologist, they both said there's no link. As an aside, when I asked the oncologist how long the cancer had been growing, she said 10 years which lines up exactly with my autoimmune diagnosis. Go figure. Anyway, I didn't pursue it anymore but I often wonder how many cancer patients go in with a pre existing autoimmune condition since treating autoimmune diseases consists of immunosuppresants/other immune modulating drugs.
If it IS paraneoplastic syndrome, the RA would go away or resolve with effective cancer treatment. Is that what you experienced or are you still feeling symptoms?
What autoimmune disease did / do you have? I have Psoriasis and was taking an immune suppressant which suppressed T Cells to stop an overly active immune system. It was working well on the psoriasis but it perhaps worked too well and was most likely, according to my oncologist, the reason I got cancer. I simply note that you have a rhemuatologist, and wondered if you have Psoriasis too perhaps?
juliej wrote:I think the shift to Folfiri is just to shake things up a bit. Folfiri is a strange beast - some people find it much easier to handle than Folfox, others are miserable. I needed Atropine during each Folfiri infusion for abdominal cramping and diarrhea. But I didn't have HFS like with Folfox and Xeloda.
Try to look at this as just a bump in the road on the way to NED! I know that's hard because I remember when people told me the same thing. But later on, I realized they were right, even though it felt like a ginormous bump at the time!
Juliej
I’ve thought a lot about why this recurrence is so emotionally deflating (other than the obvious). When I decided to keep working in the wake of my initial diagnosis, I got the feeling that if I recurred, THAT would be the time to quit because it would be a sign that I wouldn’t make it.
My therapist has warned me a few times of our brain trying to make sense of something so as to regain control. And I think that’s what I kind of tried to do - tell myself I would know what would happen if X happened.
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