Topic: New to Board

Hello Everyone!

I have been using this board for months to research the best course of action for fighting this cancer.  I am a young mother of 3 children, 5, 3 and 9 months.  I never thought I would actually post to this board as I tend to be private but my case was recently published in The Oncologist Journal and thought it may help some people who are in the same situation as I am in.  I have attached the journal article which tells you more than you probably want to know about my case (Intrahepatic, Resected, Stage 2A).  You will see two doctors responses to my case, a pro and a con response as far as adjuvant therapy.  The pro response is from Dr. Andrew Zhu of Massachusetts General Hospital and the con response is from Dr. Jennifer Knox from Princess Margaret Hospital.

I have currently completed 4 cycles of Gem/Cis and I am one week into Chemoradiation.  I am a patient at Massachusetts General with a great team of doctors, Kenneth Tanabe (Surgeon), Andrew Zhu (Oncologist) and Ted Hong (Radiation Oncologist).  I hope people find this article helpful!

http://epub.theoncologist.com/i/99248/67

Re: New to Board

Thank you so much for sharing your story with us!!
I tend to be private about my situations as well.
Your case is similar to mine.  I am 33, had intrahepatic cc and  a left hepatectomy 5/11 followed by 3 cycles of gem/cis, 6 wks chemo radiation and 3 more cycles of gem/cis. I had negative lymph nodes and negative margins, but one margin was close.
This group is such a wonderful resource.  Welcome to the site but sorry you had to find us.

Take care,

Susie

Re: New to Board

Dear TripleBlessed, welcome to our extraordinary family but sorry you had to find us. WOW! What a story. I am at a loss for words and no one can do that to me, I find something to say. You are a true hero and survivor and a good example of hope. Thank you for posting the article as well. Now that you have found us please keep us posted on your progress as we truly care. What a fine example you are for your children, they have a very couragous Mommy and you truly ARE Triple Blessed!

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: New to Board

Thank you for sharing your story, triple blessed! I am searching for hope for my sister who also has ICC and a young child.   I need to look up what exactly chemoradiation is. Best to you and thank you again!
Willow

Willow

Re: New to Board

Triple...how nice it is to meet the person I had read about a few months earlier.  Your case study has caused quite a stirr amongst the medical community and will be watched by physicians worldwide.  But behind each study is a human being - and that is why I am so happy to have the pleasure of meeting you on this site.
I was not aware of the fact that an additional course of chemoradiation had been added to the protocol therefore, I would like to thank you for clarifying this for us. Most of all, how are you feeling?  Three little ones and extensive surgery followed by extensive treatment must be difficult to tolerate. 

I wish for continued success and for many more discussions on this board.

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: New to Board

Hi,
I did read the article twice. Like you ,I am also  patient of ICC for 45months now. Dr, J.Knox is well known in the ASCO community and her view is also make sense too.(she is the one provided counter thinking  in the cons section)

AS the article indicated,recurrence is very common ,between 47-93%(average is 75% for ICCA). It is no joke on that,considering that what is the chance to get rid of all the cancer cells in the billions they had been produced in the liver and might move around through the bile and blood in the liver.

From a patient's point of view,  it is the future treatment planning that will extend the patient's life  after the ,surgery and adjuvant chemotherapy or targeted therapy or other immuno-stimulative procedure is done.

If we are lucky enough to arrive at the point of treatment result as you did; in my own opinion, this is the start of a new beginning  in searching for treatment plans to maintain the current health status; it is the time to learn about different approaches of improving the odds of survival and it is the chance for us, as patient, to  understand the limitation of current available treatment plans and continue to learn about this disease.Don't wait until it comes back and restart the whole research from ground zero. That is my personal belief at this point. It may be wrong ,but preparation is always the next step in my treatment plans.
God bless

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to Board

Hi TripleBlessed,

Welcome to the board but sorry that you had to find us. Thank you so much for sharing your story. The Oncologist article about your case is very interesting.

Dr. Jennifer Knox is a well-known expert in the world of CC. Her opinion comes across as very conservative. No solid evidence = no treatment. I understand her reasoning but I can't agree with it (but then I'm not a doctor).

BTW, I live in the same Canadian province as Dr. Knox. I had a tentative plan to set up a consultation with her, to discuss maintenance chemo for my wife. Now that I read the article, I'm not sure it would be worthwhile. Maintenance chemo lacks solid evidence, even more so than adjuvant chemo. Dr. Knox is highly unlikely to recommend it, given how conservative she sounds in the article.

My best wishes to you.

Eli

Re: New to Board

Hi TripleBlessed,

Welcome to the site. So sorry that you had to find us but am glad that you have joined us all here as I know that you will get so much support and help here. Thank you so very much indeed as well for sharing your story with everyone and I do know that it will be of help to many others.

I wish you every success in your treatment and I so hope that your chemoradiation goes smoothly and works well. And, I hope that you will keep coming back here much, and please know that we are all here for you as well. I so look forward to hearing from you more.

My best wishes to you,

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: New to Board

Thank you everyone for responding.  I recovered well from the surgery but still have lingering pain.  I will admit I was in pretty good shape before this happened despite just having a baby so I was strong going in. I was able to get back on my bike and back running about 6 weeks after surgery but once I hit cycle 3 of chemo it wiped me out.  My energy is back but the Boston weather is now my excuse smile

My Doctors decided on chemo radiation because of a close margin.  They have mapped out a conservative treatment plan and are going after a very specific area.  So far so good but I know the effects are cumulative so it will only get more difficult.  My radiation oncologist feels only a small population of people with my cancer/situation would benefit from chemorads but lucky me....I am one of them.

I made it clear from the beginning I was looking to be aggressive in my treatment.  My doctors have also made it clear to me this is a very aggressive disease but they have reiterated numerous times they have patients who have beat this!!! 

My team of doctors are known to be top in the field.  Dr. Zhu and Dr. Tanabe have written numerous articles and clinical trials in this area.  He is the "go to guy" in Boston and people travel long and far to see him.   I did go to Dana Farber for my second opinion.  They were more conservative in their approach.  I am very fortunate to have two top cancer hospitals in the same city. 

I also wanted to mention that I have followed "Wallsm" as I guessed our situations were rather similar.  Our treatment plan sounds very similar.

Thank you everyone for reaching out!  I hoped I answered some of your questions.  My oncologist already has plans for me to run the Boston Marathon to raise money for bile duct research!!!!

Re: New to Board

I am honored you have "followed" me!  Lol. I agree, our cases and treatment plans seem very similar.  When I was diagnosed, I was desperate to find someone similar to me.
I got 3 opinions on my case, especially regarding the adjuvant radiation. But I, like you, wanted to be aggressive.
Chemo did not get tough on me until towards the end when it destroyed my counts.
Radiation got really difficult around  4 wks into treatment and I was kind of miserable for about 2 wks after it ended . If you start to show signs of acid reflux, I would ask for a proton pump inhibitor right away. I would even think it would be a good idea as a preventative measure.

I have had no medical cancer treatment since February.  If you remember, I got a benign ovary mass removed in May 2012, so had to recover from that, but it was not a big deal.

To give you an update on my current status, I am feeling good.  So far, I have no regrets about my treatment, except maybe having the ovarian surgery open, probably could have been laprascopic.  I feel good.  I don't look sick.  I am 5'5, was 118lbs prior to surgery, went down to 104 at my sickest during radiation and now am a healthy 123lbs. I work full time, travel a lot and have started skiing again. My next scan is in April.

I was a runner prior to my dx. I still run every now and again but  not like I used to.  I would never qualify for the Boston Marathon but look forward to cheering you on!!

If you ever have any questions for me, please don't hesitate to ask.  I will warn you, some people have tried to email me from this site and it doesn't seem like I get the emails, so if you have tried that, please don't think I was ignoring you.

I wish you the best with your treatment and can't thank you enough for sharing your story.

Susie

Re: New to Board

TripleBlessed,
Welcome to this wonderful, caring and supportive group. Thank you for sharing your story.
Lisa

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: New to Board

Hi TripleBlessed,  I have the same team of doctors as you at MGH!   I was diagnosed with Stage T2, N0, MX Intra-hepatic cholangiocarcinoma in March 2012, had my liver resected by Dr. Tanabe on April 30th.  The tumor was 8.5 cm.  I also had to have a vena cava bypass as the tumor had attached to it...so my surgery was 12 hours.  Anyways, I feel a certain closeness hearing your story and wanted to reach out.
I did not have radiation as I missed the ideal 6-8 week post surgery window to have radiation.  I developed ascites and that was a bigger threat at that point and it was too dangerous to have radiation.  We discussed a chemo treatment, but since I didn't show any signs of the cancer, they recommended not to do it.  I am now 9 months out from my surgery and my most recent scans still show no cancer.  I get re-checked in March.  I am back to full time work and feeling pretty much back to normal.
I read the article about your cancer and we have very similar case from a cancer perspective, but different treatments.  I hope you are doing well and thank you for sharing.  I find this all very helpful.

Re: New to Board

Hi There everyone, its been a while since Ive been on the site due to not being too well from chemo I guess and a little 'information overload' and felt the need to stop researching for a moment! It is exhausting.
I read with interest the posts from tripleblessed and wallsm. I was diagnosed and operated on in sept of last year. I had a Hilar cholangiocarcinoma on background of presumed intraductal papillary mucinous neoplasm (radial R1 margin) or in short terms I had a 6cm tumour removed along with 70% of my liver, bile duct and gall bladder and then a bilary reconstruction. They also took lymph nodes that tested negative. around 6wks after surgery I started gem/cis and am currently half way through the last cycle (total 6) woohoo!!!!
At first I was told that I couldnt have radiation but being stubborn I decided to get other opinions and now I am about to start chemoradiation (5FU) in about
4 weeks time. 
I should mention that I am 39 years old and am also triple blessed with 3 gorgeous boys!
I have so many questions about what Im about to go through!!  I am so nervous, I go for my first CT scan since the surgery on Tuesday and am terrified.  But am trying to stay positive. 
So any insights into both the chemo and the radiation would be wonderful. I am told that I will probably have the pill form of 5FU and compared to gem/cis its a walk in the park?
Thankyou for all of you insights in advance.  It truly is wonderful to find such an amazing group of people with such amazing stories.

Mandy

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Mandy...nice to hear from you and double nice to know that you are well.  First and foremost, fingers are crossed for a terrific scan results.  I can relate to your feelings of anxiety - on this board we call it "scanxiety."
According to your postings, you will be using Xeloda (very similar to 5FU.)  The most reported side effect seems to be hand-and-foot syndrome, which can be treated with tons and tons of moisturizing creams. In fact, my friend slathers her hand and feet with lotion and then wears socks and gloves for the night.  Hmmm....not sure how she scratches though.
Anyway, others with much more personal experience will chime in real soon.
So glad you reported back in.
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: New to Board

Mandy - I am 18 days into chemoradiation.  I am on xeloda ( pill) and thus far the only complaint I have is feeling tired on treatment days.  I usually take a nap and then I am refreshed.  I do take compazine with the xeloda just in case and Prilosec as preventative.  I am waiting for things to get bad but my oncologist said some people handle it better then others.  Frankly, I struggled with the gem/CIs.  I had to skip a dose, lower the dose, and then eventually take shots because my white blood cells were too low.  It wiped me out and I only did 4 cycles.  AND yes you are triple blessed as well.

Tina - thank you for sharing your story.  We certainly have a great team.   We were so lucky to have Dr. Tanabe.  It is great to connect with someone local.  I know there are more MGHers out there!!!!!

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TripleBlessed that is so good to hear that you are doing so well.  Could you tell me what the two drugs you are taking (campazine and prisolec) are for exactly? I go to see the oncologists tomorrow and want to be armed and ready to go with whatever information I can!! Also do you take the xeloda everyday or every other?
And Marion, Scanxiety is definently what I have!!! Thankyou for giving it a name!!!!  and as always Thankyou..

Re: New to Board

Compazine (I think I spelled that correct) is anti nausea meds.  I take it with each dose.  I don't really know if I need it.  The Prilosec is for acid reflux.  This type of radiation can cause reflux so they had me taking it from the beginning to help prevent it.  I take xeloda twice a day only on treatment days so 5 days a week.

Re: New to Board

Thanks Tripleblessed,  I hope this post still finds you coping well with the chemo/radiation.  I had my appointments and planning scans a couple of days ago and was able to ask lots of good questions!

19 (edited by PCL1029 Sat, 16 Feb 2013 10:55:14)

Re: New to Board

Hi,
if you want to know more about scans and how it works;after you reading thur it, I am sure your Scan anxiety will be decrease a lot' here ia the liekn. if you are interested.

http://www.cholangiocarcinoma.org/punbb … hp?id=6543

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.