4-29-13

Well, there's a reason that margaritas were necessary at the end of the day today...

One of my wisdom teeth broke, so I had to make a dentist appointment at the last minute; which resulted in a lot of wasted time/money, and an appointment for a consult with an oral surgeon for next week to set up another appointment to pull the tooth.

I also spoke with my oncologist this morning.  I am ineligible for the "pd1 trial", the researchers want to limit the patients on the trial to only a few specific cancers.  There aren't any other clinical trials that I can go on right now, but that could change weekly. 

As I mentioned in the previous post, Dr. H doesn't think that chemotherapy will help me any more at this point.  If I did decide to go on a chemo treatment it would be a long shot using a chemo that I've already had but administered in a different dosage/frequency.

I contacted the Cancer Treatment Centers of America (I'm sure you've seen the commercials for the resort looking hospitals); well, they do not have any experience with thymic carcinoma and do not take my health insurance.

I guess my next step will be to contact Dana Farber and see if they've come up with anything new since the last time I met with them and hope that another clinical trial that I'm eligible for comes about soon.

I don't know what our next step in this battle will be, but I am certainly not ready to give up this fight, and we will not stop searching until we find something, even if that means taking a long shot.

4-23-13

Today's appointment involved a lot of waiting with very few answers.

The echocardiogram went fine and the results were normal.
The meeting with Dr. H wasn't productive.  He feels as though we are at the point where there isn't a chemotherapy that has been shown to work in thymic carcinoma, and if we have to result to anything it will probably be using chemotherapies that I've already had in a lower dosage and in a different regiment.  There was a question of how long it will take to get the answer to whether or not I am eligible for the PD1 therapy.  Dr. H feels as though it is worth while to wait for the answer if it will only be a month, but two months might be too long to wait.  I will call on Friday to get further clarification as to what the plan will be.

UPCOMING APPTS:
who knows?!

4-18-13

Well today is my birthday, 23... oops, I mean 32 years old (must be dyslexic)! ;o)  I had a ct scan this past Saturday and was hoping to get great results as a birthday gift - I was no so lucky.

The scan showed a 36% total tumor mass increase since the baseline scan (this includes a few new tumors that have appeared).  This increase makes me ineligible to continue on the trial. Today I had "exit blood work and testing", I refused to sit around and wait for three hours until the echo cardiogram test on my birthday, so I will have to have that done on Tuesday afternoon.

I will call my original oncologist (Dr. H) to see what chemotherapy options I have left.  Meanwhile, the clinical trial team will send out a tumor biopsy (taken years ago) to see if I am eligible for "PD1 immune therapy"; there is only a one in four chance of me being eligible, but if accepted it has shown great results in other types of cancer.

UPCOMING APPTS:
Tuesday 4/23: Echo cardiogram & possible meeting w/Dr. H

4-5-13

My last few posts have described the excruciating pain that I have been dealing with for about two months now; well, I think I finally have the pain under control!  I am pre-medicating in a way that any pain that I do have is minor to moderate and doesn't last too long.  Not to say that I am without side effects from the drug, but if things continue the way they have this past week, it is something that I could deal with long term.

Yesterdays treatment was normal with no real hiccups.  My next scan is on the 13th of April with results on my birthday, the 18th.

UPCOMING APPTS:
4/11: Treatment
4/13: CT Scan
4/18: Treatment & Results