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Oct 5, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

@hopeful33250
I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds is really random at times. It almost seems like the doc is trying to trick the cancer into submission.

Some weeks I will receive the two immunotherapy drugs, chemo, listeria, and the GVAX. Other weeks it's just one immunotherapy, chemo, listeria, and GVAX. Then another week they may leave out the listeria but include both immunotherapy drugs without the chemo.

I don't care what they do as long as it does something.

Oct 5, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

@saltis
I finished the first week of treatment and the first week of recovery, and I feel like I've been hit by a truck.
Fever almost daily, achiness, headaches, and fatigue are my new normals right now. I haven't lost any weight, but my appetite is near 0. I am forcing myself to eat.

The worst thing is that chocolate taste yucky. I'm so sad about this taste change.

So far I'm experiencing all the normal side effects, minus several others. So I'm grateful for that. Plus, I'm still able to work part-time.

Hopefully the treatments will get easier as time goes by?

Sep 24, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

I did! My retirement dream is to hike the Appalachian Trail, but with the recurrence and uncertainty I'm not sure that will happen.
So my husband too me to the end (or beginning depending on how you view it) and we hike part of my dream. Of course, Stephen King's house was just an hour or so away.

I'm not looking to travel the world before I become too sick. I'm looking to travel my world of interests.

Sep 24, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

My sister and two sets of good friends live within 2 hours of Baltimore. I live half way across the country. As of now, it looks like I'll have a two week gap between treatments. I plan to go home and work, and travel to Baltimore for treatments.

Sep 22, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

I wanted to let you know that I'm officially part of a phase 2 clinical trial at Johns Hopkins. It took 6000 miles of traveling to 4 different research hospitals to make it happen, but when I was selected everything moved very fast.

I go in next week for my first treatment. I will receive listeria, two immunotherapy drugs, GVAX Pancreas Vaccine, and a baby dose of chemo. We are hopeful that this treatment will show promise for metastatic pancreatic cancer.

I'm excited. I'm scared. I'm hopeful. I'm feeling all the emotions.

Sep 13, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

I am doing well. My husband and I went in a 6000 mile driving trip to four different research hospitals. Dana Farber didn't pan out, but Johns Hopkins might work out instead.

I just finished a CT scan to see if I qualify for a clinical trial at Hopkins. If I do I will move there and live with my sister or my good friends for my husband's former boss.

BTW, while on my trip, I visited Mt Katahdin in Maine. It was my dream to hike the Appalachian Trail. I may not get to do that, but I did climb half of Mt Katahdin to Chimney Pond. Plus I got to see Stephen King's house.

Hope you all are doing well. I'll keep you posted on the clinical trial.

Jul 25, 2018 · Coping with anxiety while waiting in Cancer: Managing Symptoms

I was going to post a new topic about panic attacks, but you beat me to it 🙂

I always experience scanxiety before a CT scan. The first time I ever received one I learned I had metastatic pancreatic cancer.

However, I've never had a panic attack until last Sunday, and it came on for no reason. It was my stay home, in my PJs, and do nothing day.

After doing laundry I began to feel dizzy. Then the dizziness became one sided and everything felt heavy on my left side. All of that subsided, but about an hour later I I started feel tightness in my chest.

I had just celebrated my one year past diagnosis date. But right before, I had a recent recurrence, after 165 days of tumor free remission, and we'd switched chemo treatments. I'm super concerned that it won't work. In addition, I have an appointment at Mayo to talk about additional treatments, and a couple weeks later I have an appointment at Dana Farber to interview for a clinical trial.

All in all….I had a panic attack.

It was scary, and I'm not sure how to prevent it from happening again.

Jun 20, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Well, that just sucks. I only got to enjoy remission for a few months. Last July I was diagnosed with stage IV pancreatic cancer (2" tumor in the pancreas & at least 18 in the liver). Within 8 months I was tumor free.
I underwent radiosurgery to the pancreas to kill off any hiding cells.
Last Friday I went in for a CT scan and learned they saw two new small spots in the liver. My oncologist ordered an MRI and biopsy to see what we're dealing with, and if the cancer has mutated, but I spent the week fighting the insurance company to pay for an MRI. The spots are so small and the CT scan fuzzy enough that the surgeon doesn't feel comfortable performing the biopsy, this the reason for the MRI and its clearer imags.
My oncologist had a peer to peer meeting with the insurance company this morning and was able to push the MRI through. I go in Friday morning and hopefully will have the biopsy soon after.

Sigh…I was really enjoying remission.

(BTW, I still feel great, and I'm still working 40 hour weeks. I told my husband, "I'm not ready to return to pain meds and debilitating exhaustion." I really hope the MRI shows nothing or the biopsy reveals no cancer.)