Topic: update on me

Hi, all. I have not written in awhile. But here goes! Post-chemo palliative left lobe liver resection 1/31/13 followed by y-90 radiation to the remaining right lobe (it had tumors too but small ones) 2/20/13 ... the plan had been to return to chemo but have not yet. Tried twice, once in March and once in April, but counts always plummeted so no more chemo. Platelets seem perfectly happy to sit at about 60 or 70.

I have done no treatment since, and felt great all summer - - and what a blessing that has been! The scans in mid-July (PET/ct and MRI) showed no visible signs of disease. Unfortunately my tumor markers never got down to zero and have been going up all summer, but then ... mid-September scans continue to show no visible disease. So we are now scanning every 8 weeks, just waiting and seeing what shows up.

I am going to have a bland embolization of my spleen to see if we can kick out some platelets (they hide there) so I can get into a trial when I have a tumor to watch. I'm looking at my oncologist's MEK inhibitor trial but you need 1. platelets and 2. tumors to watch. We know this cancer always comes back, I'm just hoping mine takes its sweet time. I love not being on chemo. One other option I have is to "treat the tumor markers" and take xeloda (which is apparently not hard on counts) and see if the markers come down. One doc says xeloda alone is not very useful against cholangio but another doc says it is. What do you all think of that? Oh, I did develop an ulcer, but there are good drugs for that. So all's well for today.

Thinking always of you brave friends of mine on these boards. xox Holly

Re: update on me

Dear Holly thank you for he update and it sounds like you are doing well. I am so glad to hear you had a good summer. Guess my feeling is when 2 Docs have different opinions I would go for a 3rd to break the tie! Keep up the good work and who knows maybe nothing will appear at all because you have your eye on it! Good to see you and good about your report.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on me

Hi Holly,

Sounds like you're doing well considering all you've been through.  Are you being treated at Sloan Kettering in NYC?  Just wondering because the MEK trial you mentioned is Dr. Lowery's from MSKCC.  I'm not sure if other doctors, from other hospitals, are responsible for that trial also.

Mary

Re: update on me

No, my teams are at New York Presbyterian and Hopkins.  One of my oncologists is Dr. Azad (Hopkins) and she's on the trial. Most trials have several sites. You can also go to Houston and maybe other places, too.

Re: update on me

Thanks for the info Holly.  My oncologist told me I'm not eligible for the MEK trial because I've had some of the chemo drugs they're using in that trial.  I'm not a candidate for surgery because I have metastasis in lymph nodes around my celiac trunk.  I have tumors in my liver and right outside the liver.  I'm stage IV.  Half of my liver is dead and the other part has small tumors.  That part was stented in May and so far is keeping my bilirubin down to normal.  I'm on Paclitaxel now. Two weeks on then a week off then back on again.

I've thought about contacting Dr. Kato at NY Presbyterian to see if he would take a chance on resecting my liver but the more I read the more I feel he wouldn't do it either.  Right now I'm stable but I have had to increase my pain medication due to more pain in the lower abdomen and back.  I'm pretty active and feel lucky I'm doing as well as I am but I worry about the future and how quickly things can change with this disease.

Thanks for listening.
Mary

Re: update on me

Mary, I would contact Dr. Kato and possibly Dr. Chapman at Barnes Jewish Hosp.in St. Louis. Send them your info and let them be the judges. Just a suggestion.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on me

Holly, good news! Yes, there's a good chance the cancer will return, but I would be so busy celebrating life to make it afraid of me!! smile
Xeloda works on some cc mutations, but not all. One of the mutations in my body responded to it, another area did not care at all that it was supposed to shrink and/or die. Possibly you have had a biopsy and one of your oncs knows which family the Tumors formerly your body belong to. I would definitely ask! I wish I could be of more help.
Congratulations on the clean scan again!

Mary, sorry to hear your pain is increasing. I wish there was another alternative, but...

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: update on me

Hi Holly,

Great to hear from you again and thanks for letting us know how things have been going for you. You've been through a lot this year and I am happy to hear that you have been feeling good all summer. Feeling good sounds good to me! Your scans in July and Sept have been good and here's hoping that continues for a long time indeed!

I had an ulcer too a few years ago and was put on Omeprazole for that for a few months and that worked well for me. Thanks again for your update and my fingers are crossed that you continue to feel good!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: update on me

Nice to hear from you Holly and that is great news that you have clean scans and a great summer!  Here's hoping that you continue to have good scans and most of all that you continue to enjoy your life everyday.

I do not have an ulcer, but I do take Lanzoprazole (Previcid) 30mg every single  day.  It seems to ward off tummy problems.  I tried to stop taking it and felt kinda crappy, so I guess I will be taking it for the foreseeable future.

Here's to continued good news from you Holly!

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: update on me

Dear Mary,
You have already been so brave. It does seem so hard when a door closes and with this cancer we start with so many doors already closed to us. But we go on and do our research and try this and that - - I took my 15-year-old daughter to an appt with my oncologist with me and afterwards my daughter said, "Mom you talked so much and asked so many questions. I have never been to a doctor appt where the patient knows as much as the doctor, it seems" ! there are only one or two established protocols for this cancer and then everybody, every one of us, is outside the box, so to speak. We are all trying to figure out what next, what am I comfortable with? What is my intuition telling me? It can be so overwhelming. Some days I just want someone to take over and just tell me what to do! My right lobe had lots of tumors so y-90 was a good choice. And I think you can inject alcohol into lymph lodes (Percy knows all about this) But chemo is the only way to control those outside tumors unless they can be ablated, so maybe they can! Don't think you are running out of choices! And please keep writing. It's just as therapeutic for the rest of us who are suffering to lend an ear to a fellow traveler as it is to unload our own worries. Sending you many hugs.

Re: update on me

Holly,

Thank you so much for the kind words. I had five treatments of stereotactic body radiation therapy (SBRT) to both my liver (where they put fiducial markers) and the tumor wrapped around my celiac trunk.  I finished that on May 13th.  Because of fevers and infections, and also becoming jaundiced, I didn't have any treatment after that until July 12th when I started the Paclitaxel which I am still on.  My 9/4 CT scan showed the tumors have not grown at all and there are no new growths so that is good.  I just keep hearing that surgery is the best option for this disease so of course I want that.  But I'm told I'm not a candidate for surgery because of the metastasis.  And that's when I start thinking maybe I should go somewhere else.  Then I see so many here post being told the same thing - no surgery because of metastasis - and I figure why waste my time and energy going somewhere else just to be told the same thing.

Holly, thank you so much for listening.  I wish you the best after all you've been through.

Peace,
Mary

Re: update on me

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.

Re: update on me

Regina...good luck with the clinical trial.  These clinical studies are not easy to conduct and require a team of people to aid and control enrollment.  Sorry you had to travel to Houston for it though. http://clinicaltrials.gov/ct2/show/NCT01438554
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: update on me

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

Re: update on me

Regina you are choosing wisely. I am sending you so much good luck I am crossing everything even my eyes for a successful trial. I just know you will  keep us posted so we don't have to go after you! LOL  Sending so many good wishes your way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on me

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

Re: update on me

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

Re: update on me

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: update on me

You crack me up and you inspire me, Serena Regina!  I would love to go on the MEK trial but I need a tumor and I need platelets. Oh well. For now my news is all of a sudden all bad - - tumor markers all up a little between July and August and then up 6-fold August to September and 4-fold more to October. Had a partial splenectomy which did not apparently work well, platelets still too low for chemo. (You can do a repeat but my goodness not back to back - - horribly painful surgery) So I'm a sitting duck now with ca-19 of almost 8000 and AFP of 3000. Things can turn bad so quickly. My oncologist is ever optimistic, but we are running out of choices even though the scans show no visible disease - - we know it's there and very busy. I always read that the mixed HC and CC tumors are aggressive! <sigh>
Holly

Re: update on me

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

Re: update on me

Some days simply are hilarious on this site.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: update on me

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

Re: update on me

Sorry, those were all the negative side effects.  Other than those, I am enjoying life wholesomely, my senses fully attuned to every pleasure and diversion in my slowed down present.  With some hilarious adventures thrown in.

with appreciation
~Regina

Re: update on me

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on me

Hi Lainy~  That is indeed an intriguing series of dreams.  I think your somnolent mind is trying to make sense of what is difficult to comprehend and proposing ideas, borrowed from reality and tempered with fantasy, that would resolve the discomfort.

I'd love to get together.  Do you ever get to NY?  I'd love to get to Arizona someday, but not sure it's in the cards anytime soon.  Maybe we could all have a skype chat or video chat (with technical assistance from my daughter).

I got my friend to answer the door, finally.  Why he didn't say anything, I do not know.  We ate Chinese food and spaced out on Masterpiece Theater.

Is the "brain freeze" similar to what I describe? 

Good luck with all the side effects.  I'm trying to adjust my expectations about how I'm supposed to feel.

warm regards,
~Regina