August 15, 2017 at 4:36 pm #95459karendParticipant
Glad to meet you!! I just wanted to pop in and say that I noticed you are in Colonge. I was in Waconia just the other day, and am in Buffalo at the moment. We are so close!
Enjoy your day!
-KarenAugust 15, 2017 at 12:17 pm #95458molly_mayParticipant
First, Catherine, my thoughts and prayers are with you and your mom. Think positive. It helps me to keep a mantra going in my brain “benign, benign, benign, benign, benign, benign”. Sometimes it works.
Thank you all, I really appreciate your insight and experience. Like most of us, I waffle between confidence and fear, and the what “should I, could I, would I” be doing. Seems something always pops like (like the cyst) to hijack the plan, and your input helps to refocus.
VTKB, thanks for the info on Dr. Sharpel. Unfortunately, the duodenum stent is permanent, and can only be removed via a Whipple like procedure. So even if I manage to beat the cancer, I’m still looking at this stent problem. After a few hours of moving, I get stomach and back aches, and need to sit or lay for a while. This has been since the day the stent was put in.
Melinda, thank you for the links on molecular testing, I will go through them and hopefully can come up a good argument to get my ONC to issue the order to get the test done. Mayo does have tissue samples from last September.
At the time of my meeting with that crazy surgeon (“Have you considered this could be the beginning of the end?” and ” Have you thought about how this is going to end?”), totally took me by surprise.. I was shocked and actually speechless. This was an older woman, with 27 years of experience. It will never happen again. I am now prepared, and if I ever find my self in this position again, I will look them in the eye, deliver a very nasty two word response, and get up and leave. I will not pay their bill, and will the tell my insurance company to do the same. There is NO EXCUSE for this behavior. For what its worth, I did report her.
Lastly, the U of M is suppose to have a top notch Gastroenterology department, but I was also forewarned that they have egos to match. I did consult with one surgeon, a Dr. Jenson, who was very different. Very personable, gave good answers to unlimited questions, offered to get additional info, and make additional referrals. Seemed very knowledgeable. A stark contrast to the other Drs I saw there.
Again, thank you all,
MollyAugust 15, 2017 at 5:54 am #95457richnkimParticipant
I know first hand what it is like dealing with a Onc dr like that, we call Rich’s dr doom and gloom and we are stuck with him because that is what is available to us in our rural area, but he is on a clinical trial at UW Madison and he is wonderful and we couldn’t ask for anyone better but we still need Dr doom and gloom because he is close to home for us.
As for the molecular testing I would do it now,if the clinical trials would let you do them first (most I’ve seen said you had to fail a treatment first)we would of did a trial first and skipped chemo. For Rich chemo really didn’t do a whole lot but tear his body down to where he had to build it back up before he could get on the trial (platelet count). The trial he’s on now so far is shrinking the tumor without the side effects like chemo had. So I think if you can’t surgery it’s to bad you can’t go right into a trial but have to fail another treatment first.
If and when this trial stops working we will try to get another biopsy and have that sent into Foundation One to see if things have changed. I wish you the best.
KimAugust 15, 2017 at 3:54 am #95456mbachiniModerator
Thanks for sharing your story, and I LOVE the attitude! I am so glad that you have had no progression this past year. As for genetic profiling I would recommend getting it done as soon as possible, especially if they can obtain a tissue biopsy without difficulty. Otherwise, there is always the blood biopsy option…..some of the reasons why would be to find out if you possibly are in the 5-10% that are MSI-HIGH or mismatch repair deficient and could benefit from the use of immunotherapy. As Catherine stated, it is always best to be thinking of plan B for down the road. Fortunately, we are starting to see more clinical trials with a targeted therapy geared towards some of the more common cholangiocarcinoma mutations. Below are some links that I thought might be of help. All my best.
MelindaAugust 14, 2017 at 5:13 pm #95455celia-capuzziParticipant
Hi Molly, I am glad to see another new person in the group. While I have less experience with some of your issues, I did have a couple of thoughts. First, I mentioned my initial experience with my ONC, I did stick with him and interactions got better. He has a nurse practitioner who we met with every third chemo visit and I explored switching to another doctor. She asked me what my concerns were; the next visit with my ONC was much better and I’ve continued with him ever since. I think she might have talked with him. Don’t know if you have others on your team that might help. I know docs can be difficult and feel lucky that my problem was resolved.
The other thing you mentioned that resonated with me was your using tumeric. I’m not suggesting that you don’t try it, but I found that many of these things cause me to have belly pain or mimic some of my initial symptoms so I have become leery of trying new things. Just a comment.
Thank you for sharing.
CeliaAugust 14, 2017 at 2:59 pm #95454bglassModerator
Fingers crossed and lots of prayers as your mother has her biopsy. I was so sorry to hear there may be signs of a possible reoccurrence.
My impression reading postings on this board is the timing of the molecular/genomic testing can relate to the timing of treatment (in other words, at the time when targeted treatment is being considered) and to whether the tumor(s) is large enough and/or positioned in a way to obtain an adequate biopsy sample. Some of our long-term survivors who have undertaken targeted treatments in clinical trials have mentioned having repeat testing with different mutations found at different points in time.
Thank you so much for taking the time to post your story. This information is so helpful to others. Please keep us updated, and best wishes that your CCA continues to be a slowpoke.
Regards, MaryAugust 14, 2017 at 10:29 am #95453middlesister1Moderator
Welcome to our group. And, I am also sorry that you have met some jerk faces since diagnosis. Hopefully, you’ll also meet lots of the great nurses and docs too. However, you need to make sure that you have an ONC who will be your advocate and fight for you. Yes, I have heard that the cancer mutates, but I would still question why they are putting off the molecular testing ( I hope others chime in). Chemo takes its toll on the body, so I think it would be prudent to have a plan B. Although clinical trials may be different as far as requirements for prior treatments, I would be curious if you have a mutation that has a promising treatment now.
My mother is having a biopsy next week on a growth in her abdomen wall. We’re holding on to slight hope that it’s scar tissue, but preparing ourselves for road ahead if it is a reoccurrence. I had to push a bit to tell the ONC that no we would not want to wait, but if it is cancerous, we want it sent to Foundation One now. I hope others can chime in on benefits or pros of holding off.
CatherineAugust 13, 2017 at 11:20 pm #95452vtkbParticipant
Sorry to hear about your experience with your doctors. If you felt like getting a second opinion about the mets in the omentum however, I know the surgery team at Mt Sinai in NYC were going to perform HIPEC on Kathy if she had mets during her surgery, which thankfully she did not. It may be worth a call if you want a second opinion or to learn more about options- the surgeon who performs the HIPEC is Dr. Sharpel , she was always nice when talking to us.August 13, 2017 at 7:56 pm #13596molly_mayParticipant
I was (finally) diagnosed one year ago today, after two months of ercp’s and eus’s and wrong diagnosis (“You have pancreatic cancer, and I’m never wrong”, except he was), in response to what I thought was a gall bladder problem, until the last ercp found Extrahepatic Bile Duct Cancer. No tumors, basically just a thickening of the lining.
Having already wasted a lot of time at the U of M, I wasted no time in setting up appointment at Mayo, and was scheduled for a Whipple in mid September 2016. Unfortunately, the preliminary exploratory, found small, less than rice size mets in my omentum, so I was now stage 4.
A nasty woman, an oncologist, gave me the “talk” that we all seem to get, basically, “average survival time is 6 months”. My surgeon was standing behind her shaking his head “No”. He had told me earlier that I had probably had this for 2 years or more (which to me said very slow growing). The fact that she clearly did NOT review my case prior to the “talk”, made anything she said irrelevant in my mind. (Do you get an attitude with this cancer or does it come later??)
Anyway, I was told I should get my plastic stent replaced with a metal one before starting chemo of cis/gemzar
Getting the metal stent, was a good decision, going back to the U of M to have it done was not. Because I “had all this cancer in my stomach and duodenum”, which was actually inflammation from all the prior ercp/eus procedures, they put an additional stent in duodenum, which I found out a month later at Mayo, had created a blockage where the duodenum went over the aorta. Mayo put in a second stent. Net-net, I was unable to eat for a month, and only able to eat small amounts after that. I lost 15 lbs in 2 1/2 months (I only weighed 105 to begin with), and decided I would starve to death long before the cancer could kill me, so I got a feeding tube. The tube goes through my stomach, into my small intestine, so even with nausea or whatever from chemo, I still get 1500 calories of good nutrition each day (real food, no sugar), and am still able to eat as much as I am able. I have since regained the weight, and am in good health, all things considered. The “feeding” happens overnight, so I am able to stay active during the day.
I started the cis/gemzar in October, and they took me off the cisplatin the end of January because of hearing loss. I have been on just the gemzar (3 weeks on, 1 week off) since then, with KNOCK ON EVERY TREE, no progression.
My cancer has been too small to show up on a CT scan from the start, and my CA-19 has been around 150 for months, then started to slowly climb the end of January, about 50 pts a month, until June when it went down to 234.
I also had an ovarian cyst that was 4cm in April, then doubled to 9.6cm in June. I saw a surgeon the end of June about removing it (my ONC wanted to “watch it”- NO, I don’t think so). Anyway the so called “surgeon” (Do you hear my attitude again?), asked me right off the bat if I thought ” this might be the beginning of the end?”‘(!!!), and then proceeded to list all of the LEAST likely things to happen, as the REASON to do nothing. She finally decided she would take it out if a PET scan showed it wasn’t cancerous!! And this was a gyn/ONC, a person who was supposed to be used to dealing with cancer, and cancer patients!
A quick referral to Mayo, a consultation with the surgeon, and by the end of the week, the cyst is gone, no fuss, no bother, and BEIGN! And the BEST NEWS, is during her exploratory, the mets in my omentum (AGAIN KNOCK ON MANY TREES!), are STILL smaller than a grain of rice!
So basically, I have been blessed with seemingly NO PROGRESSION in the last year. Even my ONC who is pretty negative most of the time, had to admit I was doing well.
I’ve been honestly, afraid to write this for fear of jinxing things. I just started back on chemo (gemzar) after 5 weeks off, and am nervous about the impact of being off that long.
I am learning that this cancer takes many forms, and I have been very blessed. My thoughts and prays are with those of you who have not been so fortunate.
In addition to good nutrition via the tube, I do eat organic/vegetarian, no sugar and take MANY supplements. It might be expensive pee, but its still cheap by comparison, as long as it can’t hurt (I do check with my ONC.) Interesting, I asked the Mayo ONC about turmeric, and she (the nasty lady) said “No”, while my surgeon standing behind her was shaking his head “YES, TAKE IT!”
I have not had molecular testing done yet, as my ONC says “Its too soon”. I think (if I understand this correctly) is that the results change as the cancer mutates and develops resistance to chemo, which is why he wants to wait? (Feel free to correct me if I’m wrong.)
So, I guess we just keep doing what we’re doing, and try to make the most of every day.
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