Topic: MRI results

My news is not good.  My MRI showed new growth.  Not huge but my CA-19 is still climbing.  Obviously chemo is not working.  My doctor said it is amazing that I still have no symptoms of my CC.  I feel good off chemo.  So we are staying off for a few months.  I will see my oncologist every 4 weeks to check my bloodwork.  We are focusing now on quality of life, not quantity.  I am discouraged when I see how well some of you do on chemo & that it shrinks your tumors! I am happy for you but then I ask "why isn't it working for me"? 
I am being referred to USC to get a 2nd opinion regarding surgery.  We had gone to UCI and was told no surgery.
I am focusing on one day at a time & enjoying these days of feeling pretty normal. 
Trusting God to be my Great Physician.

Re: MRI results

Dear Patti, this is all so strange to me.  Are you sure CA doesn't stand for California and 19 is your age?? I AM happy you are getting another opinion on surgery and perhaps you can also ask about another chemo?  You never know this could be a good visit and what you are looking for. Sine I don't know that much about chemo I have a question....why not try another one? I always consider it a good thing when you have other options and you still do. Sending you a ton of hugs!

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: MRI results

Sorry to hear your chemo is not working.  Quality of life is important, but I am supportive of you going elsewhere for another opinion.  Good luck with USC.
You are in my thoughts.

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: MRI results

Patti,
So sorry for the news that the chemo isn't working. I'm glad you're going to get another opinion for non-chemo treatments to keep you feeling good.
Willow

Willow

Re: MRI results

Patti,

I'm sorry about the bad news you received.  Is there a reason why you can't try another chemo or possibly meet with an interventional radiologist to discuss the different forms of high dose, direct-targeted radiation (I had SBRT)? 

I don't know your whole history so I apologize if these are treatments you've already had.  You are in my thoughts and prayers.

I've had different chemos that didn't work and then had SBRT in May of this year.  It seems to have kept me stable.  I am now on chemo again, Paclitaxel, and it has kept me stable - no tumor growth or new tumors - as of my last CT scan 9/4/13.  I started Paclitaxel in July and will stay on it until it stops working.

Stay strong Patti.  As I said, I will keep you in my thoughts and prayers.

Peace & Hugs,
Mary

Re: MRI results

Patti -
So sorry that the news was to great and I am glad you are getting a second opinion, those are always good to get. I will keep my fingers crossed that you get good news from the second opinion.
I will say quality of life is always important. And who knows why chemo works  for some people and not for others. It's the same question as why some people have bad side effects and some people have none.
Try to keep positive thoughts and we are here if you need anything.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: MRI results

I'm so sorry the chemo hasn't worked too great.
What all drugs have you tried?

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: MRI results

Patty....I too am sorry to hear of the CA 19-9 upward trend.  The good news is that you are feeling so well.  Patty, while you are awaiting for a referral to USC for surgery consult, you might want to also integrate a visit with the oncologist for an additional opinion re: molecularly targeted therapies.    Please, keep us posted.
Hugs,
aron

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: MRI results

I am also sorry to hear the news isn't good. And I would like to echo everyone else as far as trying different chemos, radiation, etc. also, maybe since you ARE feeling good you could try a clinical trial? That's what I did when all else failed.
BTW, my surgeon couldn't believe I wasn't sick, either, at one point of my treatment.
I hope someone comes up with something you can agree on. It is so frustrating! I know they try, but when it's our lives I want them to try harder!!

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: MRI results

Thanks everyone!  For those who asked I 1st had 2 radioembolization treatments. No shrinkage from them.  Then went to Gem/Cis which did not shrink it plus made my bloodcount go way down.  Then tried Oxaliplatin/Xeloda.  No shrinkage & horrible side effects with sores all over my legs.  The next chemo would be Oxaliplatin/folfox.  We will see how my blood is in a month before considering going back on another chemo.  I feel very vulnerable of course being off chemo but am trying some alternatives in the meantime.  Hopefully the referral to see the USC doctor will be authorized.  The other dilemma we have is finances.  We just simply don't have money for out of pocket expenses.  It would cost us 4 - 6 thousand to have more testing done for trials.  Woe is me!

Re: MRI results

Patty....Will the insurance pay for the referrral for surgical evaluation at USC?  If so, then a referral for oncological evaluation may be possible as well.
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: MRI results

We are waiting for authorization from my insurance for the USC referral.

Re: MRI results

If you haven't already, please check all the clinical trials websites.  The NCI and the Armstrong Foundation, among others, have excellent matching services.  I believe that in some cases, the research group will pay for the extra testing you need for the trials.  Also, insurance companies usually benefit from covering patients for trial testing because they would not have to pay for the expensive medications they might otherwise have to.

Good luck -- there are many possibilities out there!
~Regina

Re: MRI results

My husbands oncologist at MD Anderson told us that it is not uncommon for this particular type of cancer to respond poorly to chemo.  Then there are others like my husband that were rocking along great with no side effects at all and then wham!  All of a sudden he it quit working.  Shrinkage that had taken place was no longer the case.  It was as big if not a little larger than in the beginning.  But, when I asked about other chemo's he didn't feel there were any that would do as well as what the Gem/Cis had done since he was able to take it for a while with no issues.  So, we have moved to proton therapy given after spacer has been put into place surgically to protect other organs.  The good thing about being in these research hospitals is that the trials are available and something that wasn't available when we began this journey is now, 5 months later, his best chance for success.

Re: MRI results

Good news!  We got the authorization to see Dr. Selby at USC. I have to get all y records to them now.  That should be a huge task.

Re: MRI results

Great news Patti. Go Patti Go! Go Patti Go!

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: MRI results

Exellen news, Patty.  Good luck and know that we are behind you all the way.
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: MRI results

Regina....our clinical trial feed is linked to the NCI:
http://www.cholangiocarcinoma.org/clinicaltrials.htm
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: MRI results

hisprazr......Chemotherapies used in the treatment for our cancer are not considered to be “curative”. These drugs have yet to be developed.   Once maximum benefit has been reached, other options become available; the best of luck for a positive response to the upcoming radiation therapy.
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: MRI results

Just got a call that I was denied the authorization to see Dr. Selby at USC. sad  They are referring me to a Dr. Charles Chandler at UCLA.  Has anyone seen him?

Re: MRI results

Pattymelt....while searching our previous threads, I was not able to locate a posting re: the above mentioned physician.  Hoping for someone to come forward and share his/her thoughts with you. 
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

22 (edited by Lainy Tue, 29 Oct 2013 21:36:20)

Re: MRI results

Patti, Google his name , I DID. Funny I COULDN'T GET A GOOD READING ON IT.
Maybe you can get a  feel for him. Make sure he has dealt quite a bit with CC.

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: MRI results

Pattimelt - my Dad's surgeon at UCLA was Dr. Busuttil and his oncologist is Dr. Finn.  Both are experienced with cc.

If I may suggest, having dealt with insurance on getting approvals to see doctors etc, please do go see Dr. Chandler.  If he's not the right person because of his area of focus or expertise, ask him to refer you to the right surgeons and oncologists at the Pfleger Liver Institute at UCLA which is where the liver specialists reside.  His referral could get you to the right place within UCLA faster than trying to argue with insurance.

Best of luck.