Topic: Cannot believe how we've been treated

I am not sure if this is the best location on this board to post this message, but since it relates directly to my wife's first ever chemo experience, I thought this would be OK.

Horrifying week due to the Oncology team treating my wife. On Sunday, my wife was admitted to the hospital due to pain levels increasing. We had been scheduled for our first chemo treatment on Tuesday. However, when the Oncologist talked with us on Monday, we were told the bilirubin level was too high (2.9) to begin treatment. And there was nothing more they could do if this number did not get better. NO other options. We were beyond stunned. I reached out to other contacts who did not agree and I was ready for a battle. Fortunately, the number dropped by Tuesday morning and they agreed to continue with treatment on Tuesday.

On Thursday, still inpatient, the Oncologist came by and said - once again - the bilirubin level jumped to 5 and there was nothing else they could do for us. So twice in three days I find myself trying to console my wife, my two young adult children, and my wife's mother.

I reached out to the two doctors at major cancer centers where we had gotten second opinions (they had agreed with the initial Gem/Cis plan so we felt comfortable having it performed locally). They both felt there was no reason to stop treatment and offered to speak with our Oncology team.

When I suggested it to the Oncologist (even gave the business card to them), the response was "Let's wait till Monday". This was on Thursday. So we were left having to wait 4 days before they would even talk to someone willing to discuss my wife's case. And we still weren't sure if they would even do the chemo on the following day.

The end result, only because of having to push them, was we will have the next round of treatment on Tuesday.

I just can't believe how we've been treated.

Through this episode, the real positive news is my wife had minor side effects to the first round and is feeling (and looking) better every day.

Re: Cannot believe how we've been treated

THAT IS NOT ACCEPTABLE! I am sorry but I can't remember where your wife is being treated. I would also have a chat with the Hospital Manager. I would change hospitals and make this one do everything possible to help you make an easy move. A Bili of 2.9 , no treatment? Are they kidding? Now 5 is not great but chees we have seen some pretty high counts here. I hate to be so down, but I get angry easy when our Family is treated like this. I would take that last cocktail Tuesday and have a place you would like to go to and again make the Hospital pave your way. Wishing you the best and please do 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: Cannot believe how we've been treated

I concur, 2-5 bilirubin is not significantly high, I suggest getting with a different oncologist.

Re: Cannot believe how we've been treated

Have you looked at Fox Chase in Philadelphia? I realize its a bit of a drive but I like it there. Just changed to them from Sloan Kettering. So far, everyone I have met is compassionate and seems to enjoy helping others.
I used to make day trips to NY to Sloan Kettering. They are a great hospital and have a satellite office in Basking Ridge. The only thing I will say is I do not recommend Dr. Nancy Kemeny, unless you don't care if you are treated by someone who doesn't seem to care. I stuck with her for 2 years because she is brilliant, but finally gave up and am so happy I made the change.

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: Cannot believe how we've been treated

Thank you for your responses. We received positive responses from both fox chase and Sloan. They both confirmed they would continue treatment. I feel much better knowing both of these great places are ready to work with us. We are convinced that we have a path forward.

On Mother's Day, my wife is surrounded by her children and her mother. We are all together to support my wife and best friend on this special day.

From our family, we hope you can enjoy this special day with your loved ones.

Re: Cannot believe how we've been treated

Oh, everything in your post is a good news day! I know it is such a relief to get that validation on treatment and condition! hAVE A WONDERFUL DAY TODAY  with that Super Hero Mother and Wife!

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: Cannot believe how we've been treated

Hi Scheitrumc,

I agree that you need to choose a different place. This is exactly why we say to go to a major cancer center that treats many CC patients. Nobody should have to fight, argue, or push for things to get done. A good oncologist will listen to what you have to say and then explain why or why not that is a good idea. You and your wife will feel so much better when you are at the right place. I hope your wife is enjoying her Mother's Day and her care will be better from now on. Bless you both.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Cannot believe how we've been treated

Kris00j,
May I ask what is your diagnosis ? The reason for my question is my wife has unresectable ICC, bile duct cancer. While we liked our consult visits to both places, we felt Sloan had more breadth of experience with this particular cancer.
Having said that, we had a great experience at fox chase and I personally felt the oncologist there was terrific. Given what we know right now, my wife is leaning towards Sloan.

I would be interested in your thoughts on both centers.

Thanks

Re: Cannot believe how we've been treated

Hi Carl,

I also find it unacceptable how your wife has been treated. If this continues (can't believe they couldn't even make a phone call till the Monday!) I would suggest changing doctors. Having someone whom has the same plan as you is important in the fight of this disease, for peace of mind as well

All the best

Re: Cannot believe how we've been treated

I have been inoperable since the beginning. Stage IV. I think it's extra hepatic. I always forget that.
My first onc and surgeon were from Abington near me. When I heard CC I went to Sloan. Dr. Yuman Fong at Sloan is wonderful. I absolutely love him. He speaks to you, not AT you, if you know what I mean. Great guy. In Jan. 2012 we thought I could get a resection... The tumor has been wrapped around my vena cava. He thought it might be possible to get it out and oblate the cells that would be left. He was very sure it would be good results. BUT then it spread to my lymph nodes again while we waited for a lung infection to clear. I had a portal vein embolization to start to kill off the left side of my liver and grow the right side. Unfortunately they nicked my lung. By the time that was clear enough, the lymph nodes had grown again and were wrapped around too many organs. I was told I was very sick. We tried SBRT (at Fox Chase) and it worked, then a new node popped up. All radiated nodes are stable and showing necrosis.
My onc, Dr. Nancy Kemeny, has been very detached. I ask questions and might get half of an answer. She frustrated me to no end. But her reputation is amazing. She is brilliant. So I stuck with her. And I miss her assistants. They were great.
When the latest node popped up I asked about choices, trials, etc. her answer was to check out any clinical trials and do my own research. I asked if there were any at sloan and got no response. So I called fox chase. They have a clinical trial which I Entered. I love Crystal Denlinger, my new onc. She discusses any questions I have. I feel we all need someone like that. And my rad onc, Joshua Meyer, is great! All the staff so far are wonderful. Every one of them seems to enjoy their job and seems to want to help.

So to answer your question, there are good and bad at both. Sloan is better known, and Dr. Fong is wonderful. Bad point: Dr. K. Sloan is also willing to consult with a closer onc for your treatment, if you can find one you like. And they have the Basking Ridge satellite office for scans, etc.

Fox Chase: not as well known yet. But 40 clinical trials, 1 aimed at cc. And great doctors and staff. Oh, and easier to get to! I don't know if Fox Chase will consult with a closer onc. They are 20 min. from my house: another plus for me.

Good luck with your decision. They are both great places and I am still here because of dr. K so she can't be all THAT bad!! I just need a little personality and hers is lacking.
If you do decide to go to SK, it's also easy on the train. Jump on a line to NY Penn Station, then take the E subway to 53rd and Lex. It's right there.

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: Cannot believe how we've been treated

LOVE Dr. Denlinger. She was the doctor we visited for our consult at Fox Chase and was outstanding. She's even helped us twice since then without hesitation. Great communicator, clearly knowledgeable in this area.

Much like you, we felt everyone at Fox Chase was very nice to us and genuinely wanted to help. We do feel Sloan has more experience and my wife liked everything about Sloan.

We feel good about both options which, frankly, is a good position to be in right now.

Best wishes to you. I hope the clinical trial proves valuable for you.

Re: Cannot believe how we've been treated

Thank you. I hope you are happy with your decision. Sloan does have many well known cc oncs. But I will repeat my concerns for Dr. Kemeny. She is not warm, nor will she spend time with you. She is brilliant, but I needed to feel my onc was on my side, and I did not get that. I will recommend Dr. Fong if you need a surgeon. After the cancer shrinks and dies from treatment, that is. Keep positive: it is important!

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.