update on me

Regina, my head is always light headed, my memory is shot, I am not trusting my judgment, I have been getting depressed and NEVER have in my life. I am getting weaker, very tired, joints and muscles ache, bottom of feet get red and sometimes burn. With all the MEDs I have tried for U C I seem to reach a plateau and then stop healing. I AM going to try and push through for the Nov 1 infusion as it is the first 3 that really count most and that will be the 3rd. Then the 8th will see my GI. He has already told me there are other things I can try but Remicade is the best. This morning my daughter told me to pack a bag and come to her for awhile but I am just more comfortable being alone in my own place.
On the dreams, found out that Death actually means a new beginning but still don’t know why there is another person who is alive in the dream. Mmm I wonder if Teddy is sending me these dreams but I can’t figure out why.
I have not been to NYC in years but if you get too cold you are welcome here! Luv from the Space—y Cadet!

Regina the Suprema! I loved waking up to your post. You are so upbeat and that is the best attitude you can have which does help a lot! I now can relate to what all of you go through with side effects as I have many from this Remicade. I have a GI appt Nov 8th after the next infusion and made a list of side effects for him and there are 16 that I am having daily. The worst is the brain freeze. This is weird but I have been having dreams and there are 2 people in them, one is always someone I knew who has passed and the other is someone still living. I am usually good at interpreting dreams but not these! This morning was about a man who passed and he and his wife were getting remarried. I’m cwazy! Regina we should get together and it would be one nutty time! I am curious if the restaurant called you and charged you for the food? Keep up your good work and it IS work.

Hi Marion, Lainy, Mary, Holly, Kris, et al.~ I don’t know why sometimes I have these surges of activity — I was kind of overemphasizing that, perhaps, but I will ride that wind as long as I can when it blows this way. Today, for example, I got up, called my mother for her birthday (a long one), had breakfast, pushed myself through a laborious (small) jog in the gloriously fresh, rain-scented sea air (oh, how I love not being in Houston), had a complicated trip planning conversation with my man, which exhausted me and led to a long nap, into dark of night. I still can’t keep my eyes completely open. I ordered Chinese food and a while later, when there was a knock on the door, I wouldn’t let the guy in (he said he was “iny” when I asked) because I didn’t think I was expecting anyone. (I guess he meant “Chinese.”) True story.

My MDAnderson sojourn, at least the medical aspect, went fairly well. The drugs are causing my blood pressure to go up about 30 points sys/dias in a month, and the team is in disagreement as to whether to treat it because I’m barely above normal, because my “normal” is so low. Interesting debates have ensued as to whether the numbers to be considered are the standard 120/80 or my usual 90/60 as a baseline. My acne is getting a bit better on topical and oral antibiotics, but a new rash of unknown origin erupted on my inner arms and groin area. Liver enzymes (not bili) zoomed up, as expected, so now I have to have labs done every week. Otherwise, I have extremely dry mouth (bread in my mouth feels like bread crumpled into my palms), this unpredictable, mind-doping sleepiness, sporadic wheezy feeling on exertion and occasional diarrhea.

Awaiting scans in November — this time at Johns Hopkins!! Thanks for crossing all those things for me! (You better uncross your eyes, though, or they might stay like that.)

My best heartfelt wishes to you all.

~Regina

Hi Holly! No one has called me that in ages!! (You blew my cover. Shh.) So you need a tumor, huh? I have lots of extras. How can your numbers be so high without a tumor??? Isn’t there some other weird mechanism that can cause this other than growth of cancer? These are all supposed to be “aggressive,” and yet, quite a few folks are holding steady for a long while. I had understood that your platelets had gone back up over 100. Did they go back down? I can’t believe that after all you went through, the procedure wasn’t effective. Ugh. You are brave and strong, dear Holly. How about an approved targeted drug, since not all of them affect platelets? Want some phone numbers at MDAnderson? I’ll even throw in some crazy Houston adventures from my last thirty six hour solo round trip, ending yesterday, and maybe a few tips (learned the hard way).

How are you feeling? Thinking of you accompanied by fierce healing emanations of every kind I can muster in your direction.

BTW, Johns Hopkins is going to take me, so I will be there sometime around the 16-18th of November with a panoply of graphs, rays and grams.

hugs,
Serena

Regina….You are too funny. A typical Regina day compares to someone else’s entire week’s activity level. I get it; I am very much like that. Given that you never quite know the upcoming day’s physical state, you might want to prepare for plan A and an alternative plan B. Acne is a pain whatever age we are; is there a cover-up you can suggest? My daughter completed her chemotherapy treatment for Hodgkin’s Lymphoma and sports the very same look you are describing with you hair. She uses a wig most of the time, but also the clip-in hair extensions seem to work well for her. Just a thought.
Hugs to you,
Marion

Thanks, Marion!
So far, my days have varied widely. On some days I have had diarrhea, which was controlled by one immodium but left me feeling useless the rest of the day. Trying to hydrate. Yesterday, I felt very good and went body surfing in the ocean, got some work done, did a vigorous bike ride, made dinner for friends and did some painting. Today, I feel lousy and tired with diarrhea again. Too bad, because I had all sorts of plans to get errands done and take my mother for a bike ride and participate in a wonderful workshop. Let’s hope I feel better later. I know these vacillations are part of the game, here. What’s tough is to plan without knowing how one is going to feel.

Meanwhile, the expected acne rash has erupted on my face, causing me to look Not My Best, especially with the weird short hair regrowth I sport on my head! Must tune up my wigs and get better Cover-up.

Thanks for all your cheerful support. I hope you are doing well.
Regina

Yes, Marion, they are certainly complicated, by necessity. The trip was an adventure, anyway, and we slipped in a fun trip to Austin in between appointments. I’m going to see if I can be transferred to Hopkins, eventually.

Thanks!

be well,
Regina

We certainly do forge ahead on this path as intrepid travelers. After a couple of chemo protocols to treat a recurrence three years post resection, and having weighed many options and consulted with five docs, I have enrolled in the MEK/Pazopanib trial that Holly mentioned. I first went to Hopkins to see Dr. Azad, but they lost an important staff person to an unforeseen leave and have not been able to enroll anyone so far. She referred me to Drs. Shroff and Zinner at MDAnderson in Houston and we made the schlep there a week ago. The medical center is impressive; the city oppressive.

Despite some initial trepidations about timing, they were able to get all the testing done within those five days and start me on the trial as of Tuesday 9/23. So far, so good. Some fatigue is hitting, along with hypersensitive skin on my face.

Both meds have been FDA approved individually for other cancers, but not in combination. The Phase I part of the trial included all solid tumors and has been going on for two years with good success. It was due to the surprisingly good response of two cholangio patients that the researchers won a grant to add 25 cholangio patients to the trial. I think it is not officially Phase II, but the dose has been established and side effects logged for two years.

I’d love to know if anyone else on here is enrolled. I’d be glad to chat with anyone considering it.