update on me
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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,
MaryDear 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.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-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
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!!
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…
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.
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.
MaryNo, 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.
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
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.
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
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