Nikki,
My mom too did not have an elevated Ca19-9 count. Hers were totally normal, even though she had a 7centimenter tumor. I too questioned that and not sure who responded but I remembered them saying that in 20% (don't quote that exact number) that the CA marker does not elevate. Not sure why?? Enjoy all your great news!! You are correct miracles happen every day.:)

Hello All,

I am curious if CC is such a rare cancer then why is it that at Sloan there are many doctors mentioned in this forum? My mom is under the care of Dr. Abou Alfa which I have never seen mentioned on this forum? We are happy with him that is not my issue, it just struck me odd that's all....any thoughts??

3

(9 replies, posted in Good News / What's Working)

Thank you for writing in!! It is great to hear from people who are several years out from original diagnosis.

Congrats!! Great news!! I always say NEVER SAY NEVER!!

5

(10 replies, posted in Introductions!)

Hi Melissa,

My mom had a resection in August. She has intrahepatic CC so she was not a candidate for a transplant. If she had Hilar CC like "Jathy" you can read her posts...she had a transplant more than 4 years ago.  From my understanding they say that once you have a transplant you can not receive chemo?? Your post says your husband needs to wait 3 months?? This is ONLY my opinion I am NOT a doctor but I do think that getting the transplant is not a negative!! CC is not always receptive to chemo so getting rid of the tumor seems like a good start!!

6

(11 replies, posted in Good News / What's Working)

She was in NY otherwise she would of RAN home lol!! She came in second in a race last week...I want to make a Christmas card with her holding the trophy and send it to the doctors who gave her less than a year and gave up on her! But now that would not be nice would it??????:)

Mom had her scan today and all is clear!! Best Christmas Gift EVER!!!!

So sorry my cell is 860-836-2600 please call

9

(4 replies, posted in General Discussion)

My mom's tumor markers were never high....even when she was newly diagnosed with a 7cm tumor...I see many post about the markers being good or bad but I am wondering how accurate they could be??

Dana Farber gave my mom our 5th opinion...said she had a Klatkins tumor (she did not) and said she was inoperable....(they were wrong) we sought out Dr. Chapin in St. Louis. We simply called sent our records and the team of doctors viewed everything with out even getting insurance info?? Cost us nothing and ended up saving my mom. She had her resection and is undergoing chemo. She is doing great. Give Dr. Chapman a call and speak to Heather. Mention my name (Rosetta, Rose Famiglietti's daughter) they will help you. Feel free to call me anytime 850-836-2600

I really thought Dana Farber was the best we were VERY wrong. I am curious if it was the same doctor. We saw Dr. Enzinger

Gavin I read the article can you explain what it means?

It's not fair at all...my mom runs marathons! Never eats anything processed EVER!!! Washes veggies fruit etc. doesn't touch red meat???? Doesn't touch sweets?!?!? 3 months after her resection she is undergoing chemo and is STILL running almost daily!! Last week she ran 8 miles one day....she said her time stunk but still 8 miles?? It just blows my mind??? I read so much that most cancers are lifestyle not genetic??. Just wish we had a clue.

I know it should not matter because it can't change anything but does anyone know how CC is contracted?? My mom was this epitome of health and my kids now say if their grandma who is super healthy got this than why should they eat their veggies?? I provide them with an appropriate response for a child....but I am looking for an answer too??? Has anyone out there got a clue?

My mom is taking only Gemzar no Cisplatinn....we went to Sloan and the oncologist knew my hesitation regarding chemo. I read all the time that it is not very effective. I was happy to see that he put her only on the Gemzar. The standard of care is usually the gem/sim combo. I felt that he knew how important quality of life is and did not throw an intollerable treatment her way. She walks or runs every day and feels great. Very few side effects...just another idea to think about.

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(8 replies, posted in Good News / What's Working)

Hello all,

Needed to add some good news to the group. My mom had her resection 8 weeks ago and is off of all pain meds for the past 5 weeks and just ran a 5k this past Saturday. She was not too happy with her time but like I always say just be happy you finished and did not come in last. She actually placed 3rd. Chemo starts next week....still wondering if she should do it?? It seems all the research says it does not work?? Her quality of life is getting back to normal hate to see chemo take that away from her if there is no evidence that it works?

Any thoughts??

16

(45 replies, posted in Introductions!)

My mom just came back from St. Louis where Dr. Chapman did a liver resection on her. We were told by 4 local doctors and 1 from Dana Farber that she was inoperable. It easy to see if they can help...actually the whole process was so easy that I was nervous that it was all too good to be true. Just call Dr. Chapmans office and speak to Heather. They will have you fed x all your scans etc. there and then their team of surgeons will review them. They never took any insurance info or money to do any off that!!! So you have nothing to loose. We just had our miracle and I hope you will have your too. My parents were there for 38 days and our new friend Cathy was will us every step of the way. Please contact her or myself for more on Dr. Chapman.

17

(7 replies, posted in Hospitals)

My mom had surgery in St. Louis at Barnes Jewish Memorial. Dr. Chapman did a liver resection and now we are backin CT and we are heading to Sloan Kettering for a consult with an oncologist there. I was wondering if anyone out there has any experience good or bad with any oncologists at Sloan?

After 5 doctors told my mom that she was inoperable we found Dr. Chapman in St. Louis. Please all of you reading this...SEND THEM YOUR INFO!! They are amazing at getting back to you...,you pay nothing to have them look at your records. It is worth a try he has worked miracles for my mom and look up (Jathy) her story is what inspired me to bring my mom there. She has been in St. Louis for a month where she had her liver resection.

Update on my mom...today we are 2 weeks and a day out from surgery. She was released from the hospital yesterday after the put a new JP bag in before she left. She is staying at the hotel nearby the hospital. We expected her to be home by now but not complaining we are just grateful that she is recovering. She no longer has to self cathoder and her infection from the incision is healing nicely. She is being spoiled rotten by our new friend Cathy and her family. They took my mom out for lunch today and she actually ate French fires which she never eats LOL!! She walked a couple of miles the other day when she escaped the hospital and today managed to paint her toe nails. So all in all things are good. That is my opinion if you ask her she is still in lots of pain but that is to be expected. Now if the JP bag drys up she will be good to come home and we will then begin our journey with chemo. I am hoping that after the recovery from the surgery which at first was pretty rough chemo won't seem too bad...

20

(5 replies, posted in General Discussion)

Yes Dr.Chapman did do the surgery and we could not be more pleased with him!!! He is a kind caring man. When he called me the other day he actually asked me if it was a good time? Can you imagine that? So down to earth!! Good luck to you and when you are back at Barnes contact Cathy she has been a god send to my family!! She really is the nicest person I have ever met!!! Best of luck to you!!!

Hello All,

My mom had her resection 11 days ago and is still in the hospital. She has a drain for the blood and bile that has not been removed yet and she is having a problem urinating. They have to insert a catheter in her every 4 hours. They say it is because of the pain meds so my crazy mom stops taking them just Motrin and she still can not viod and she is in crazy pain. Now depression is setting in. Months ago she ran a marathon and today she can do a couple loops around the hopital floor. The surgery was a success because they did get the whole 7cm tumor but there was lymph node involvement and microscopic cells left behind. I worry that we had her do this only to extend her years of chemo scans and worry. Is there anyone out there that had a resection and had lymph node involvement as well? Just curious to your experiences. I am just sad today I was there a week but had to come home. My parents both sound defeated. Thank god for Cathy who has been visiting and feeding them:)

She will barely take pain meds because they told her that is a reason she is having the issues with urinating. The more pain meds the less walking she does and then her lungs start to fill with liquid. It's a double edge sword. And as for Cathy yes we will always keep in touch we are so much alike in so many ways and I miss her terribly. Her being there for my mom and dad when I had to return home is a gift like none other. I know god sent her to me and I plan on keeping her:)

Hello All,

My moms recovery has been tough. She has to use a catheter to urinate because they say her bladder is asleep. She is in lots of pain still. This is a women who up,till 3 months ago ran 30-40 miles per week and now she can barely shower with out assistance. I am sure she will eventually recover but then she will be faced with 6 months of chemo. Yes I found Dr. Chapman and yes the 7inch tumor was resected but the final path showed vascular involvement and 4 lymph nodes were involved. The cancer is locally advanced what ever that means. We were hoping for clean margins. The cancer that remains is microscopic so we have to hope the chemo will work. Now I am sure we are in better shoes because we are no longer dealing with a tumor I just hope we extended her life to experience mor than just chemo radiation and never ending hospital visits.  She said if she knew that she would be in this kind of pain she never would have done it. I told her we will see if she feels the same a few years from now. During child birth I said I would never do it again and I did so hopefully thus will be a distant memory and along the way we met our ANGEL named Cathy who after all she went through lives life to the fullest and is one the happiest people I know.

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(5 replies, posted in Chemotherapy)

I have seen that eating a diet that will keep you blood in an alkaline state will starve cancer cells. Cancer feeds off of sugar. If you send me your email I will send you a PDF book and you can see exactly what I am talking about. DO NOT THINK FOR 1 SECOND that doctors study anything homeopathic because most don't! One of my best friends is living proof that watching your diet can keep the cancer at rest. Now will it work for everyone?? Does chemo???? Why not do both???

My apologies if I offend anyone so please this is my opinion and that and a dollar gets you a cup of coffee....

Jules my friend who 5 years ago was diagnosed with stage 3 breast cancer. It went into her lymph nodes. She had a radical mastectomy chemo and participated in a clinical trial. Her surgeon told her to enjoy her children. Need I say more about what the doctors felt her prognosis was. Now YES she did have chemo and YES she participated in a trial and YES she changed her diet. My point is the medical world and naturopathic world should join forces. Both can work and both may not but why not be opened minded to both?? We all know that chemo certainly does not always work so why put all our eggs in one basket? I believe that cancer grows in acid environment "that has been proven" and if we work to keep our blood in an acid free environment by oxygenating our blood we can keep the cancer at rest.

No one should be foolish enough to trust the pharmasuitical industry to have our best interest at heart. It is the number one money making business in the world and cancer makes money!!! There will always be arguments in both directions I say throw both at the dam cancer WHY NOT?