Staying positive
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Hi Annekel,
It is nice to meet you and thank you for posting your wife’s story. Having information on patient and caregiver experiences is so valued by our community. I am sorry you had to find us. It is positive to hear that your wife is getting good care despite COVID. The newly FDA-approved treatment for our FGFR2 patients sounds promising judging from the recent press reports. I hope if your wife is approved for this treatment, that you will post about her experience with it.
You are very right about how similar the social distancing is to steps cancer patients due to their immune systems being possibly compromised. When COVID became a concern, I dug out from my basement my leftover supply of masks and gloves. I had saved them thinking I might need them someday, but did not imagine something like COVID would be the reason why.
Take care, regards, Mary
Funny you talk about “the world joining us”, we were saying the same thing and my comment was it is a little safer for my husband doing chemo not having to explain to people to stay away.
Your “itchy skin” comment caught me attention. I had itchy skin at least 6 months before the earliest signs of jaundice.
Had I known itchy skin may be an early indication of cholangiocarcinoma I may have started treatment 6 months earlier than I did.
“Staying positive“ = a good idea❗️
I’ve been lurking for a few months and thought I would say hello. Thanks for the site, its been helpful. My wife was diagnosed about 9 months ago–we went to urgent care for what I thought was a bladder infection the day before her 70th birthday, and came away with a diagnosis of CC. Tumor wrapped around the bile ducts and causing bilirubin backup and discolored urine. And who knew that itchy skin could be a symptom of something so bad? Stent placements, then 6 months of chemo (Cis-gen), which was bringing the CA19-9 down but it went back up last month. Currently not operable unless it can get shrunk down.
We are in California and blessed to have a great medical team. The exciting news is that our doctor is looking to get her on a brand new med, Pemazyre. It’s made by Incyte and was just approved 2 weeks ago. Its the very first treatment ever that is specific to CC. You have to have had one other treatment round and have the FGFR2 tumor marker, both of which my wife has. So fingers crossed, we are still waiting for confirmation that she can start it.
I’ve been reflecting on cancer during a pandemic. I can no longer go to treatments with her, we have our doctor visits by video, and there is an extra level of scary to hospital trips and every day life. But on the other hand we were ahead of the curve on the social distancing, and now its actually easier not to have to explain that we aren’t shaking hands or hugging. In a weird way, I feel like the world has joined us in our predicament, if that makes any sense.
Peace and thanks.
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