Topic: Staring a new clinical trial..HELP

Hello to all those battling cancer out there

This is not my first visit to these discussion boards, but this is my very first post and way of reaching out. In February of this year, my mother, was diagnosed with Stage IV Metatsatic Liver cancer (primary unknown). After rounds of tests, bloodwork and the beginning of treatments, we have finally been able to focus in on the true primary, which has been determind to be bile ducts (or as you all know,  Cholangiocarcinoma). It has been a difficult diagnosis to swallow, but my mother has remained adamant in her fight and we continue to stand by her...as we will not give up.

I am reaching out to those fighting this disease, whether you are fighting it yourself, or fighting it along with your family members with this disease. We have had many ups and downs along this road, and have recently been faced with yet another bump in our road.

My mothers first treatment began just weeks after being diagnosed with rounds of chemo every 3 weeks, of Taxol and Carboplatin. We followed her progress with CT scans after every 3rd treamtent, and initially were pleasantly surprised to find some shinkage and progess. As time progressed and chemo treaments moved on however, we were soon faced with a little disappointment to find the chemo treament had stopped working and a few spots had come back.

And so a new path began, mom had a port placed and began new chemotherapy treaments, with Gemzar and Oxalitplatin.  And as before, we have just recently checked her progress with another CT scan.

Unfortunately this new chemotherapy is not taking charge, and some spots have again increased in size. While the news is more difficult each time, we again, continue to fight and pray that her doctors know what is best. We are being treated at Mayo hospital in Rochester, and couldn't be more pleased with the care so far. Doctors are recommending starting her on a clinical trial after a couple weeks break from her chemotherapy. And so now the wait begins. The wait for the chemo to get out of her system, and the wait to find out which clinical trial will suit her best to try and kick this thing.

I research daily, ask questions daily, and sometimes I don't know where to turn. Is there anyone out there who can help me learn more about clinical trials that are best for her cancer, or those who have seen success? I don't even know where to begin, but need to do my part.

Thank you all for your time reading my very long post....

A concerned daughter

Re: Staring a new clinical trial..HELP

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.

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: Staring a new clinical trial..HELP

Hi Lainy

Thank you for your post! I have been diving into the trials and researching like crazy. It's so wonderful to have so many people I can reach out to. Cancer changes your life in more ways than I ever understood. It can be overwhelming at times, but we just keep pushing through. We are hopeful that this next journey will lead us to the right path, or at least the start to the right path. Thanks for your help! I will be sure to keep you all posted as we beging this next stage

4 (edited by marions Fri, 09 Sep 2011 10:31:34)

Re: Staring a new clinical trial..HELP

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

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: Staring a new clinical trial..HELP

wittrockj,

What clinical trial are they considering for your mom?  I also go to Mayo, Rochester, and I'm presently on a phase I clinical trial.  They keep very close watch over you.
http://clinicaltrials.gov/ct2/show/NCT00878163
I think it's almost ready to begin the phase II part of it.  Going to ask that question at my next visit next week.

In my opinion, clinical trials are the way to go.  Trials are started only after the drugs or drug combinations have shown promising results in the lab. Problem for us with cc is that there just aren't many clinical trials available.

Kathy

I, too, am very pleased with the excellent care and treatment I receive at Mayo.  We are definitely spoiled when it comes to getting the results from our tests.

Re: Staring a new clinical trial..HELP

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

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: Staring a new clinical trial..HELP

Wow!

Thank you all for your warm welcome and responses. We have been overwhelmed with this process, as many of you have already experience, so every bit of information is so helpful and greatly appreciated.

Marions-Thank you for your kind words and the information you have passed along. We are very excited about the opportunity to participate in a clinical trial, not only to help my mom, but in the hopes of helping many, many others battling this disease. Mom signed up on day one of being seen at Mayo to be involved in research, because she too feels everyone deserves a fighting chance. And if there is any way we can help someone else succeed then we have done our part. I am thankful to know more about the process of clinical trials and what to expect. We too hope we can add the information with our experiences and help someone else in need. Thanks again for your help

Kathyb-  We do not know what clinical trial she will be accepted into as of yet. Doctors said she qualifies for a couple of different trials, but we will not know more until they review all of her information and tests more thoroughly. In addition, they have said she needs to be chemotheray "free" for a minimum of 4 weeks before starting a trial. She received her last chemo treatment just two weeks ago, so we have a little bit of wait to go before we can know more information. Thank you for the information regarding the trial you are on. If you don't mind me asking, how has your experience with this trial been so far? Have the side effects been manageable? And how do they monitor your progress? Any information you could pass along would be greatly beneficial to us as we are trying to learn anything we can about the options available for my mom. I hope to find out soon which trial will be selected for her so I can update you all.  We have been very fortunate with my mothers' health so far, as time and time again she seems to prove them wrong, with remarkable lab results each time, and minimal, manageable side effects. She has the attitude of a saint...and sometimes I don't know how she puts on a smile, but cancer is not going to get her down. Thank you again for your information as well. If I find out anything about the clinical trial soon, I will be sure to update you!

Gavin-
Thank you to you as well for your kind words and information. I have been researching daily, through the links you have all provided to learn as much information as I possibly can. I understand exactly how you have felt, as we have felt some of the same emotions as we have worked through this dreadful disease process. It is the most difficult thing I can have ever imagined, but we are so thankful and appreciative of the support out there from the people who truthfully understand. It has been a blessing in disguise to be able to reach out to others. I too am glad to hear you have the right attitude and continue the fight like us. It helps make each day just a little bit easier or more bearable.  Doctors have not said much yet about what type of treatments they recommend, as they first felt it was important to start with chemotherapy. We now wait to start a clinical trial and see where that brings us. We have been very fortunate in the fact, that her labs have remained normal, and she has yet to experience any signs of jaundice or itching, or any of the expected symptoms so far. Thank you for your information. I know I won't find all the answers I want, but whats important is together all of us fighting this disease can help each other find pathways to success. I will be back often to update you all as we know more about her care.

Thanks again to all who have responded. Your information is greatly appreciated and helpful as we seach for more answers. Thanks

Re: Staring a new clinical trial..HELP

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

Re: Staring a new clinical trial..HELP

Kathy B,
               I am the mother of  Jenna, fighting cholangiocarcinoma. I am on all the lists for available trials and am not sure which one I will be in, however the one my oncologist described sounds exactly like the one you are currently in. I too have great care at Mayo, I have a coodinator who is very helpful. I do have to be off chemo for a minimum of 4 weeks prrior to starting so if a spot opens before then I will have to wait for the next one to open.. Thank you for your responses it has been very helpful information.

Jan

Re: Staring a new clinical trial..HELP

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.

Re: Staring a new clinical trial..HELP

http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=1

I think this is the trial she is under...now to research..what to expect, what works, and hope find answers.

Re: Staring a new clinical trial..HELP

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.

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: Staring a new clinical trial..HELP

Hi Wittrockj,

Thank you for letting us know about your mum starting her trial. I will keep my fingers crossed that all goes well with her tests so that she can start on Monday, and of course I will also keep everything crossed for the best possible outcome for your mum with this. Thanks also for posting your link to the trial as well. Please let us know how your mum does on this.

My best wishes to you and your mum,

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: Staring a new clinical trial..HELP

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.

Re: Staring a new clinical trial..HELP

Dear Wittrockj, oh, I am sorry to hear this. This is why we appropriately call CC a "roller coaster" ride.  Hopefully the next appointment for her will be just want you want and need. Best wishes.

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: Staring a new clinical trial..HELP

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

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: Staring a new clinical trial..HELP

Update on my mom:

Well we have had a rough couple of days. Mom wasn't feeling well late Tuesday night, so she went into the doctor Monday and they ran some labs, which landed her in the hospital. It appears her potassium and her albumin were low, so they wanted to put her in observation to give her some fluids and give her some zophran to help with the nausea she has been having. To date, mom had lost about 50 pounds on this journey, but after almost a week of NO eating, we were suprised to find her up 10 pounds. It apepars she is taking in some fluid in her legs, and I am now concerned she has some ascites in her belly. We wait this morning for a new report from our doctor back home and the oncologist at Mayo. We might be heading to Mayo to figure out what's going on and see if we need to start some treatment instead of waiting for a clinical trial.

This has been some difficult news to swallow. I fear that this is just the beginning of things taking a turn, and getting worse. My mom is only 54 years old, with two daughters who are not yet married or have any children. I am scared she will miss out on all that life has to offer not only her but us. Please pray for my mom as we continue to wait for answers and hope to find something that will make her feel better soon. Thanks

Re: Staring a new clinical trial..HELP

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.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: Staring a new clinical trial..HELP

Dearest Wittrock, my prayers are most definitely with you. You just know wht I am going to say next....Be Strong!
Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference. We are all here for you.

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: Staring a new clinical trial..HELP

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

Re: Staring a new clinical trial..HELP

Wittrock....a tidal wave of support is heading your way.  Remember this roller coaster ride....we are on it with you together.
All my best wishes,
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: Staring a new clinical trial..HELP

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

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: Staring a new clinical trial..HELP

Hi Whitrockj,

I'm sorry your mom was not able to start her trial.  My husband, John, has Stage IV intrahepatic CC.  We see his oncologist tomorrow as he just had scans on Monday.  His last scans in August were not good; his oncologist told us he was going to check to see if there were any trials that he might qualify for.  I'm anxious to see if there are any trials and also, if these scans show any change from the last ones.  John is taking gemzar/cisplatin/avastin now.  I will keep your mom and your family in my prayers.  Try to stay positive and keep fighting the fight.  PeggyP

Re: Staring a new clinical trial..HELP

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

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: Staring a new clinical trial..HELP

Hi Peggy,

I hope that you get some good news tomorrow. I will be keeping everything crossed for you and am sending you tons of positive thoughts.

Best wishes to you and John,

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.