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Confused by CT scan result: How can I get it explained?
Pancreatic Cancer | Last Active: Oct 29, 2023 | Replies (28)Comment receiving replies
Oh my gosh, I just happened to come across what you wrote above. This is exactly what I’m always trying to explain. I’m a 62 yr old female who has an oncologist 2hrs away. Everyone keeps saying you have to advocate for yourself! I have no idea what I’m looking for, I’ve only seen the oncologist on my 1st visit. It seems every time I get chemo something bad happens. Allergic to that F drug and sent to ER. Blood clot and embolism to lung next treatment, etc. I’m going for my 3rd gem/abraxine rx Monday.
I don’t understand centers for excellence. Went to John’s Hopkins when I was 1st diagnosed in March but they said I’d have to move to the area and someone would have to move there too to get me to appts, chemo, etc because I’d be too sick and needed someone there. Who’s going to quit their job to do that? So I just gave up and came back home. I feel like I’ve signed my death warrant because I don’t understand all this. Can’t drive anymore because of all the meds. How does everyone get to work? I’m so depressed and constantly having panic attacks I just stay inside my 4 walls and in bed most of the time. If you don’t believe in whatever the centers for excellence are, how would you go about trying to find somewhere that cares if you live or die? What do you do if you’re older and all alone like I am? I just can’t understand how you go on living even halfway normal lives. I’m sorry for going on and on but when I read what you wrote I thought maybe this person can explain.
Replies to "Oh my gosh, I just happened to come across what you wrote above. This is exactly..."
My visits to MSK require arranging a flight and hotel which is expensive. I will gladly do that on occasion but cannot do that for Chemo treatments. And I wouldn’t move there if I could. Family keeps me strong and being away is so isolating.
Im trying to arrange a virtual visit with their oncology team to see if I would be eligible for any clinical trials. In the mean time I am now going to a comprehensive cancer center for chemo. So far they have been open to suggestions from MSK.
Unfortunately with this cancer, everyone responds differently and each center does things differently. It’s hard to know if you are getting the “best” option. I have changed local oncologists twice because I felt they were not fighting hard enough or answering my questions about different treatments. I truly felt they were just going through the motions to bill my insurance. I needed someone somewhat knowledgeable about different options AND honest with me if they didn’t. My current oncologist seems to fit that description.
Perhaps you can speak with someone in the team about working with a local oncologist they work with on a regular basis. Cooperation can be difficult, but John's Hopkins is one of the top places. I am sure they have a patient portal and you should be able to reach out to them. They also can help put you in touch with their social work/counseling department who can help you address some of what you are going through. I am also alone and it is difficult to be alone in this situation.
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@scalettasandy
I just read your post and it really touched me. Do you have any pre-existing conditions? I am surprised that your infusion center and Oncologist would not consider changing the dosages of your chemo to allow you a reasonable lifestyle. I did Gemzar for 3 months and will go back on soon to complete a 6 month regimen. I have a24 hour period feeling horrible, like the Flu, then I am back at work. I do it on Friday so am back to work on Tuesday. I do it every other week. If it is taking you down that much, pls tell your oncologist to adjust the dosing or provide better pre-meds. You deserve much more attentive care. I wish I was near you to help.