Staring a new clinical trial..HELP (Page 1 of 2)

Hello WITTROCKJ and welcome to our wonderful family where you will find the most courageous and caring people in the world.
I am sorry to hear about your Mother's journey with CC but would like you to know that you are at one of the best places for her treatment. I also want to say that you have an awesome family with a great attitude. I believe on our home page is a Category marked trials. You can also go to our search button at the top of the page and type in trials and I know you will get a ton of posts on the subject. It does seem like we do a lot of waiting for many things but Mayo knows best and the chemo does keep on working awhile. Please keep us updated on Mom's progress and best of luck on the trials.

wittrock.....welcome to our site. I would like to share with you some of what I have learned within the last six years as an advocate for clinical trials.

We have to understand the concept of a clinical trial.  First and foremost clinical trials are considered to be biomedical or health-related research studies in human beings. Although, participants in clinical trials gain access to a new treatment before it is widely available the main focus however, is for the patient to play an active role in their own health care, and help others by contributing to medical research.

This cancer (as many others) is not understood on a molecular level.  To date research has not provided us the reasons as to why certain cells mutate and become cancerous.

Bile duct cancer (cholangiocarcinoma) has few available treatment options with patient response ranging anywhere from great to dismal.  There is no curative treatment for our patients.  Unfortunately, as it so happened in your Mom

Hi Wittrokj,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined us all here as you have come to the right place for support and help, and you will get a load of that here from all of us.

You are right that this is a difficult diagnosis to swallow and I can still remember how I felt when I heard my dads diagnosis of inoperable CC, like being hit over the head with a bat. But coming here helped me as I was around people that knew how I felt and what I was going through, and we sure do know how you feel right now. Yes the up's and down' or the rollercoaster of emotions is something that all of us here can relate to. We have the good days and the bad days but we all keep on fighting, and from what you have said, both your mum and your family want to fight this all the way and that is great to hear.

Here is the link that Lainy mentions regarding clinical trials -

http://www.cholangiocarcinoma.org/clinicaltrials.htm

There is also a video of a webinar in that link about clinical trials that may be of interest to you. Have your mums doctors talked of any other treatment apart from chemo, radiation type treatments perhaps? There is a lot of information here in this site provided by members who they or there loved ones have underwent. My dad had a metal stent inserted to help relieve his jaundice and he also had PDT as his treatment.

That is great that you are seeking further information as the more information you have the better informed you will be when it comes to making decision regartding treatment etc. Please do not be afraid to ask questions here. We can't promise to have all the answers but we will do what we can to help in answering them. And keep coming back here and let us know how your mum gets on. We know what you are going through and we care.

My best wishes to you and your mum,

Gavin

wittrockj,

No chemo 4 weeks prior is part of the protocol of my trial.  I hadn't been on chemo for almost 9 months, so that part wasn't holding it up for me. It still took about 4 weeks before the actual trial started.  I had to wait until a spot opened up.  As it is such a small trial and phase I, there are only 3 new people at a time on the Mayo Rochester part of it.  It's not necessarily this way with other trials.

Ask if your mom's name can be put on a waiting list for the trails they are considering her for. 

If you want, you could ask your oncologist what trials your mom is being considered for and then look them up.  Every trial has a study coordinator who will be most happy to answer any questions you have.  Ask who that is.  The study coordinator will have a direct line and email.  Mine sent me the consent papers just to look over a few weeks ahead of the start of the trial.

You may know this, but your oncologist's secretary is the person to call when you have questions for your doctor or need a prescription.  She will give him the message.  Have your Mayo # on hand.  I always receive calls back from the doctor the same day.  They treat me so good.

As far as side effects.  The trial has been much easier than my very first treatment of radiation and 24/7 FU-5 chemo in the fall of 09.  That treatment left me with an ulcer on my esophagus. I have had a lot of problems with stomach acid since. Priolosec totally healed me up and took care of it, but I can't take priolosec with one of the drugs I'm on now because it lowers it's effectiveness.  It took a few weeks after trying other over the counter products and then my finally asking my oncologist if there was any prescription I could take because it was keeping me up at night and then I would be so tired in the day time.  My oncologist checked with the specialty pharmacist and found a prescription I could take. I am happy to say I am not having that problem any more.
Another side effect was "the rash".  They call it a rash but it actually looks like acne, although they say you can't treat it like acne or it will get worse.  It's a side effect of one of the oral drugs.  When my doctor first heard I had it he came into the chemo ward while I was getting chemo with a prescription in hand that has put it all under control.  The study coordinator sees me every time I go for chemo and she told him about it, or else the chemo nurses did.

I go to Mayo 3 times a month for chemo and take two oral chemo drugs daily.  On my week off I still have to have blood taken locally and the results are faxed to them.  Once a month I see the doctor. 

I had an MRI and other tests the day before the trial started.  At the end of the first cycle (3 weeks on chemo, 1 week off) I had A CA-19 tumor marker test which showed by tumor markers have already gone down around 287 points.  Next Friday I have another MRI to see what's happening. 

Hope there was something here that helps answer some of your questions.
Kathy

Kathy

Well we got a phone call last night from Mayo, asking for my Mom to be there this morning to get started on the preliminary work for her clinical trial. She is having lots of testing over the next few days,  CT scans, lab work, EKG, echo, and will meet with her oncologist on Thursday this week. If all lights are green, we will get the go ahead, and she will start her trial on Monday next week. I was unable to be with her for this appointment this week, but my understanding from what I have been able to get from my mother and sister so far, is she will be on an Oral chemo, called AT-406. She takes this on Days 1-5, and then is able to return home for a bit. She will return to mayo each week, for lab work and to get her drugs to take home, as long as labs go well. She will have a CT scan after two rounds of this drug, I believe in about 2 months time. I am trying to find out as much inforamtion as I can about this study so I know more of what to expect. I will update you all as I learn more information.

Hi Wittrockj, I am sending my best wishes and lots of luck for your Mother have a very successful turn out with her Trial. Thanks for the update and I know you will keep us posted.

Well I am back again for another update. We received some disappointing news yesterday. Mom was at Mayo for her first rounds of baseline tests before starting the trial, and after the first day of tests her oncologist called to have her come in to see him. We were saddened to learn that one of her labs, her alk. phos, was a mere 5 points to high for her start her trial.

So it's back to square one we go. We are back on the waiting lists again for new trials, and hoping we get a call soon. For now, we wait and we pray that the answers we need will come soon. Thanks for all of your kind words and support.

wittrock....fitting the clinical trial criteria is a rigorous process and often times people will not be accepted due to various reasons.   Don't be discouraged as something better may be coming your way.  Good luck and please, keep us posted.
All my best wishes,
Marion

Wittrock,

You can bet that my prayers are with you and your mom. You are a good daughter and it is wonderful that you have the ability to care for her. Keep your chin up and keep fighting.

Dear Wittrock-My prayers are with you and your mom. I have hard time posting on here sometimes because I am a CC survivor due to a clinical trial and I want all to have the same positive outcome I did. I like your mom was only 52 and our only child a junior in college, this was not a scenario I had ever pictured. Our stories are what you read about someone else and go "oh my"! I keep posting "CC survivor" to give HOPE! HOPE, Prayer and a great doctor is what will get you through this.
Lots of prayers-Cathy

Dear Wittrock,

As the others have said, stay strong. I know sometimes that it can be hard to do, but your mum needs you to be strong for her right now and I know that you will be. And please remember that we are all here for you always. Loads of positive thoughts coming your way from me.

My best wishes to you and your mum,

Gavin

Peggy, praying for a good report tomorrow, I almost feel like I am with you! Be strong!