Topic: Scan results...some help and suggestions please.

I dont get on here much...i wish I had more time. But I knew I'd get some help and answers here smile

My moms latest scan was 7/24/13.. showed a t12 and L2 spot along with many new "lesions" in her liver. And I believe there are a few spots in her lungs. Also something about hypodense lesions. None of which have been a definite cancer diagnosis. She had a bone scan and we haven't gotten the results yet. She has been "stable" up until this point and has had no chemo since sometime in april 2012. She did 6 rounds of gemzar/cisplatin and her tumors reduced 25% overall.  Good results... they stopped her chemo not sure why and have never mentioned starting it again. I'm not sure why that is either..

So I'm just wondering if any of you could help me understand this and offer suggestions of what we can suggest. I know this is bad, and that her cancer is spreading more. I just want her around longer and she wants to fight! She is definitely a fighter and we have a ton of love in our small family..

We live in Kentucky, western Ky. And I honestly hate her doctor but other docs in different fields say he's really great. He just has little bedside manner and made me livid for slamming a book down at me when I asked a question about her scan.

Thanks for any and all help! She was diagnosed dec 2011 btw.

Christi

2 (edited by Lainy Fri, 09 Aug 2013 23:47:32)

Re: Scan results...some help and suggestions please.

Dear Christi, welcome to our remarkable family. I believe a lot of questions need answers and if this Doc is not willing to work with you, I would go elsewhere. Actually I feel you should have had a few more opinions by now. If the chemo was working why did he stop it? Has he ever taken care of a CC patient before. Why would he do nothing for a year? A CC patient needs to be with an ONC who is extremely familiar with the Cancer and also be treated at a Hospital where that has had many CC patients. Something just doesn't sound right to me here. She has not been stable if all these new growths turn out to be METS from CC. If your Mom wants to fight I would take her to a new ONC immediately. Sorry if I sound upset but I feel very sorry for your Mom. This ONC has wasted a whole year doing what? When is she supposed to see him again? I would be fully armed with all the questions you have as only he can give you those answers as only he knows the what and why for how he proceeded as he did. You also should have been told why he stopped the chemo. I don't know what else to tell you but it is paramount to get to a different ONC. Be strong and good luck! Please keep us posted as we really do care!

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: Scan results...some help and suggestions please.

Hi Christi,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined in with us here as you are definitely in the right place for support and help and you will get loads of each from everyone here. Thanks for sharing with us what is happening with your mum right now and I'm sorry also to hear about the new spots, lesions and spots in your mums lungs.

A few things don't sound right here with this onc and I agree with Lainy that it could be time to look elsewhere for a new onc. Here is a list of treatment centres and doctors, onc etc that was created by the members that could be of use to you -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

Can I ask where your mum is based and where she was treated? Here is another link that may be of interest to you -

http://www.cholangiocarcinoma.org/major … enters.htm

I don't really understand either why the Gem/Cis was stopped if it was working. I can understand taking a break but not stopping it altogether, especially if it was working and not explaining to you the reasoning behind you is just wrong.

I think that this onc's attitude is terrible to put it bluntly. The slamming down of a book when you asked something about a scan is so wrong and if it was me, then I would certainly be looking at changing if I could. Have any other treatments apart from chemo ever been discussed with your mum? What about radiotherapy or surgery?

From what you have told us, your mum sounds like a real fighter and you say she is up for this fight, how do you think she would feel about getting second or third opinions elsewhere? I am sure that the members here would be able to give you recommendations to doctors or onc that are in your area.

We are here for you Christi. Please keep coming back and let us know how everything goes for your mum. You don't have to go through all of this on your own.

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: Scan results...some help and suggestions please.

Her original ONC was wonderful but he moved to a practice in Wisconsin. My aunt has went with her due to my job but I have FMLA approved now and I will take off when I can. I'm a single mom of 2 and I sadly work seconds. And this jerk of a doc only sees non chemo patients in the afternoon which so crews me up to go with her. I told her that day I wish she would go elsewhere.. We have been to Nashville to see liver specialists etc and she also had been originally diagnosed at University of Indianapolis. Long story so I'll save you on that one lol.

I will call her first thing tomorrow and explain. And the hospital was great, the staff was amazing and she did great during the 6 rounds. She didnt even lose her hair!!!

She is willing to fight and as an only child, I'm not giving up either. No one who loves someone would. She wants to do chemo and is going to demand or ask anyways, lol. But I may do a little checking behind her back about other doctors. It really is a shame he did this to her. I'm not sure what his reasons are. I guess he said there was no reason to do chemo since she was stable all that time supposedly..she had scans every 3mo.

I feel responsible for not pushing for chemo etc...I feel so guilty. I told her I'd take it away and trade with her if I could but of course she said no way she'd ever do that even if it was possible. 

THANK YOU SO MUCH for your help, kind words, and compassion. God Bless!

Re: Scan results...some help and suggestions please.

Hi Christi,

Thanks for that. Can I just say, please do NOT feel guilty, you have nothing what so ever to be guilty about! You are doing everything possible that you can for your mum and you should not feel guilty. None of this is easy and there is no manual or right way as to how you should go about everything here. I was my dads carer when he was fighting this and I can tell you that you are doing an excellent job in here in supporting and helping your mum. Once again, please do NOT feel guilty about anything! Keep coming back here too as I know that that will be of help to you as well. Stay strong.

My best 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: Scan results...some help and suggestions please.

Hi Christi, we know you love your Mother or you would not have written to us. If we sounded a little upset about it, it was with the Doctor not you! Please do not waste your energy looking back as it serves no purpose. You are on the right track with your thinking by looking for a major Hospital for CC and a new ONC. You could start by thinking about cities that are perhaps 2 hours of drive time. On our home page towards the bottom is a category of Hospitals and treatment centers that our Members have used. Take a look and see if there is anything not too far from you. I am hoping some members from that area will chime in here on where they have been treated. Don't look back and BE STRONG! You are not alone now, we are all with 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.

7 (edited by jathy1125 Sat, 10 Aug 2013 09:51:00)

Re: Scan results...some help and suggestions please.

Hi Christi-Sorry to have met under such difficult circumstances. I am a CC survivor ( you can read my story at www.catherinedunnagan.com) and my miracles happened at Barnes-Jewish Hospital in St. Louis MO.under the care of Dr. William Chapman. I noticed you are from western Kentucky so this is not to far. Even if your mom is not a surgical candidate Siteman Cancer Center is one of the tops and has a vast knowledge of CC. Please contact me if I can help.
Lots of prayers-Cathy

Re: Scan results...some help and suggestions please.

Hi Christie, as others have said, I would not tolerate a doctor being so unprofessional as to slamming a book because I asked a question. If you are looking for recommendations...Indiana University's Simon Cancer Center in Indianapolis has an excellent oncologist very familiar with CC, Dr. Paul Helft. He is very patient and will talk to you and answer your questions as long as you have them. They also have a great surgeon familiar with CC and an aggressive reputation for doing resection surgeries and implanting liver infusion pumps, Dr. Michael House. In my two years of dealing with staff at Simon, while fighting my wife's CC, we never had one negative experience with anyone, a fantastic hospital with fantastic staff.  Hope this helps, prayers and best of luck with your momma.

Re: Scan results...some help and suggestions please.

Ty all of you for your suggestions.  It means Alot. We are going to call different doctors tomorrow.  We are looking into the Nashville area but will go where we have to. I told her she has gotta start being treated by someone who is familiar with this cancer. We have wasted too much time already. Going back over mom's later to make dinner for us. She really enjoys being with me and the kids. And it makes her smile and laugh so much. Makes me feel like we have so much strength. She agrees with me on everything,  we even re read some old scan results. We have them printed for our own knowledge and in case I'm not there. Her blood work and liver functions are good. Very good. So she's healthy enough to do treatments. I really wanna go pop Dr.  Winkler in the face and make him wake up. But would do me no good. Sure would feel better lol.

Re: Scan results...some help and suggestions please.

If all else fails we will travel to indianapolis or st Louis to the places you all recommended. Thanks so much again. God Bless xo

Christi

Re: Scan results...some help and suggestions please.

Great, Christi! You are doing everything right. There is nothing like the Grandkids, better than any RX! I just wanted to suggest that to get ready for any ONC you end up seeing, you need get copies of all LABS and Tests, they belong to Mom and you can get copies. The new ONC will want to see them. Ya got me excited now and you will receive so much relief after a visit with the RIGHT Doctor. It is awesome that Mom is willing to listen to you and agrees to everything, a lot of parents don't want to as they are in denial and then the child and parent have to go in to role reversals. Wishing you a ton of good luck tomorrow and hope you have a quick decision. As always let us know. Please tell Mom, I really admire her and her strength!

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.