My new onc
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Kris
You are selfless indeed, for participating in this trial which will help others in the future all the while feeling great about what it can do for you. The charm necklace itself is merely a symbol of compassion and it is lovely and fitting that you have passed it on to a soul who needs this right now.
Keeping you in my thoughts for continued low ca 19-9 and md side effects!
Willowo.k., I will quit worrying (I think) as you are on top of the situation. The reduced CA 19-9 expression certainly is something to be thrilled about. You go, Kris.
Hugs,
MarionOh, don’t worry. I’m reporting everything!! Some of them MIGHT be side effects! The skin problems (which are minor compared to the alternative) are probably side effects.
The weight gain, coupled with the lower CA 19-9 numbers, is hopeful, according to my onc. This hopefully means the cancer is very inactive!!Kris…the clinical trial you are participating in – a phase I study –
http://clinicaltrials.gov/show/NCT01285037
is to determine the toxicity level and being that you are in Group B to also determine the effect it has on your tumor.
Although, a phase 0 study has been conducted on about 20 people or less, this trial is to pinpoint side effects and at which doses such occurs. Kris, don’t hesitate from speaking with the Primary Investigator regarding any questions you may have.
Hugs to you,
MarionYay indeed Kris, superb news!! Looking forward to hearing your next scan results and you know I’ll be keeping my fingers crossed for you as well!!
Hi all.
I updated in the clinical trials section, but just wanted to say that 4 weeks in and my biggest complaints are weight gain, bloated hands and skin rashes/dryness. Not bad. And the numbers for my CA 19-9 are lower! 0-37 is normal. Mine is now 39.3. This is the lowest it’s been! And the rest of my bloodwork is pretty good. Yay! In 4 weeks I find out how well everything is going… Ct scan set for June 14 and results on June 17.Kris,
Thanks for the offer to call you but I think I’ll be okay and wait to see what happens on Monday. You have your hands full with what you’re getting ready for and I don’t want to take you away from that.
I hope all goes well with the testing on Tuesday and you move along quickly in the process to get started in the trial. This is very exciting and I look forward to hearing from you as you move along.
That was a very selfless thing you did giving your charm to that woman.
Mary
Wow, Kris, I can’t wait for Tuesday either! What a wonderful thing you did by giving that woman your charm. I do believe it is your Grandmother dropping the pennies, I believe God is working the Medical parts!
A Teddy penny story: One morning after I was DX with the UC, I awoke with a song in my head, “Pennies From Heaven”. This tune was extremely popular about 10 years before I was born and I never really hear it except in a 1930’s movie. Later that day I called T daughter in Palm Springs and was telling her how weird to hear that song as it meant nothing to me. She was astounded and said, “Dad used to sing that to us kids when we were little!”. Its all about how things turn around and get better with pennies from heaven!Mary,
I did not have that issue with my SBRT. When we did the simulation they asked if I was breathing normally for me and I said as long as I stayed calm I was. And I think the radiation angles must have been different? So they did not clamp my breathing off, just told me to stay calm which I mostly did… with a little help from my Xanax friends! BTW, my resting breathing is extremely shallow.
Feel free to call me if you need to talk this through. 2676259873. I will warn you that I am battling over precerts, referrals, etc right now so may not be able to answer or may have to interrupt the call.My tests for the trial begin on Tues!! If all goes well and I am accepted, they will schedule the biopsy and the race is on! I’m very excited about this, as I believe God led me to this.
This is how certain I am: I have been wearing a “One Day At A Time” charm for 2 years. It was given to me with the stipulation that when I no longer needed it I gave it to someone who does. Last night I met a young woman who is 1 year out of her 2nd battle with breast cancer. She was also beaten with a baseball bat and has brain damage. She now has my charm…. I figure I am in Gods care and don’t need it anymore, and I was compelled to give it to her last night.And Lainy: guess what? 2 more pennies after I did that! As for who they are from? My grandmother passed 1 month before my fight started. I actually believe its God, but if not, then I think it might be her. She was one strong lady. She passed at 98 years old.
Thanks again Lainy and Kris. Even though I’ve had cancer since August 2011, I feel like I’m starting all over again with this new diagnosis last month.
Yes Lainy I agree with the terminology “professional patient” since this is like a job – the most important job of our lives maybe – besides raising our kids. I feel like my decisions can be the difference between dying and surviving. That’s what I think about when I wonder why not surgery for me. I read surgery is the best option. I’m hoping my mind will be put at ease on Monday when I meet with the interventional radiologist.
Kris, your situation sounds very similar to mine except that they were going to do a resection on you until the lymph nodes blew up. It’s good to hear some tiredness was all you experienced for the SBRT. I have spoke to Lisa a couple of times and she also seems positive about the SBRT. It’s good to hear from people who have gone through it. I believe you guys more than the doctors since you’ve actually experienced it. Was the actual treatment hard to get through? Lisa said they clamp your nose and put something in your mouth? I have my breathing exercises scheduled as part of my simulation on Monday. I guess they’ll go over all that with me then.
Thanks again for helping me move through all this. It really means a lot to have others to talk to who actually know what I’m going through.
Mary
SBRT for me at least “kept in ticking” as Lainy put it, for 7 months, and the radiated cells are still docile, or quiet, or whatever word you want to use. There is still cancer, but it is hardly reactive on the only PET scan I’ve been allowed to get.
The new node is just that: new.
Anyway, the only side effect I had was tiredness. I won’t even say fatigue, because it was just until the next day and then I was fine. I had no reactions, but they do warn you to watch for changes in skin and a few other things (no memory… Thanks chemo!)
My levels are the lowest they’ve ever been. CA19-9 is at 60, which is the lowest it’s been since all this started 2 years ago. And everything else is normal or close.
1 year ago I was supposed to be having my resection, but God had other plans and my lymph nodes blew up and it was cancelled. I have never been jaundiced and never felt sick except from treatments. But I will always be inoperable now, according to Dr. Fong.
Lisa Craine also had SBRT. If she reads this, maybe she will chime in.
Good luck!Mary, none of us want to be here in any capacity, but we are so we make the best of it which includes cathartic writing! Truth be told IF we were not here I would miss you all. Please keep in mind that even though you are off Chemo it keeps on tickin awhile like the Timex watch. I know when Teddy had Radiation it cooked up to 3 more months after. I really don’t think the “Radiator” would continue with the Simulation if he felt they could not or should not do this. OK, so I have a new name for all our CC patients……Professional Patients!
Lainy & Kris –
Thanks for the words of encouragement. I guess I just keep hearing how surgery is the best option and I’m being told surgery isn’t an option for me. That’s where my confusion comes in and I have to clear it up at my appt on Monday. I thought surgery wasn’t an option on my first tumor (when I was diagnosed with Adenocarcinoma – unknown primary) that was wrapped around the celiac and hepatic arteries. But that tumor was killed off by radiation last year and is still inactive as of my last scan and MRI on 2/14/13.
Based on the MRI on 2/14 I was given my new diagnosis of Intrahepatic Cholangiocarcinoma – Stage III. I’m told the tumor is in my bile duct in my liver. I’ve never been jaundiced and I’m told my liver is functioning well. Although my Alkaline Phosphatase level has been as high as 360. As of last testing on 3/18 it was 274. Oncologist was not concerned about this since she felt it could be from chemo I was on at the time. I haven’t been I chemo since 1/29/13. Also, Bilirubin has always been within normal range.
Obviously, I don’t want to go through if I don’t have to but I want to get the best possible treatment now while I’m relatively healthy to give me a better chance of survival.
Sorry for rambling but Lainy did say it was ok and she is right – it is cathartic!!! (chuckle, chuckle!!!)
Kris – thanks so much for the vote of confidence for the SBRT. Would love to hear what your side effects were from it.
Thanks for listening guys!
Mary
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