June 8, 2018 at 6:15 am #97094
I was back at mayo yesterday for a test to see how well things were flowing through the new bypass stent, and it was kind of funny because the radiologist was like “Why are you here? They did what a week a go? I’ve never heard of such a thing”. Then he went and made some phone calls and came back and said “Wow, that’s pretty cool”.
The tests went well, so I should be moving up to “soft food”. Yay!
MollyJune 6, 2018 at 11:07 am #97092gavinModerator
What great news indeed about this new procedure!! Thanks loads for sharing that with us all and I am sure that this will be of interest to loads of people out there. I hope that your recovery goes well and please keep us updated if you can on how things go. Great news once again!
Now you make sure to enjoy that eating when you are able to, enjoy!! 🙂
GavinJune 6, 2018 at 8:10 am #97088
Thank you both. They have me on a clear liquid diet for a week and I find myself dreaming of food. Seems it’s been so long since I have actually eaten I can’t wait!
One note of discord: The Mayo records keep referring to a “malignancy” in my duodenum. They didn’t do a biopsy, in fact it’s never been biopsied, and its hard to believe that a cancer that is doing noting would so quickly grow as to block the stent. The much more likely answer is inflammation from the “mangled and fragmented, with open ends” of the stent unraveling. Its especially concerning as I was very specific in telling them that the Dr who placed the stent “assumed” it was cancer when in fact it was inflammation from numerous EUS/ERCP procedures, and the inflammation went away 3 months later. It just seems to me that medical records should state known facts. If they want to add opinions, they should be labeled as such.
MollyJune 5, 2018 at 2:08 pm #97086spokanemomSpectator
Such great news Molly!! Thank you so much for sharing and lifting my spirits. You have such a positive attitude. I wish you a smooth and speedy recovery from this most recent procedure.
VictoriaJune 2, 2018 at 9:28 am #97066bglassModerator
What wonderful news, thank you for sharing!
Goes to show there is always hope, especially as medical technology advances. I wish you a speedy recovery and a new life with no feeding tube. This is just tremendous.
Regards, MaryJune 2, 2018 at 7:33 am #97065
What a week!! What started with severe dehydration and dangerously low electrolytes, which put me in the hospital, ended with an absolute miracle.
I went to ER last Friday because of dehydration, thinking they would give me fluids and sent me home. Instead they admitted me due to low potassium and sodium. The stent problem (mangled, fragmented and open ended metal coils in my stomach) had gotten much worse to where I could not eat or drink, except for what I got through the feeding tube. After two days of IV’s, they decided they had to keep me until Mayo could take me to get the stent problem fixed.
Memorial day I got a nice ambulance ride to Rochester. I met with a teams of GI Dr’s Tuesday AM to discus how to fix the problem. I asked about a bypass (basically a new hole in my stomach, so food would not have to go through the stents). Things were put on hold so they could discuss this option with a surgeon. Later that day, I was told they would do an Endoscopy first thing Wednesday morning to fix the stent problem, and then we could talk about surgery at a later date.
Wednesday morning, literally 5 minutes before they were to start the endoscopy, a dr came and told me he thought we should forget about the stents and just do a bypass THAT MORNING DURING THE ENDOSCOPY! He explained that this was new technology, but that they had seen very good results with it. IMAGINE, being able to basically perform surgery with no incision, no pain, and no recovery to speak of. Within a hour it was done! If all goes well, within a few weeks I’ll be eating normal, and will probably be able to get rid of the feeding tube (which was placed after the stents made it impossible to eat enough to keep my weight up).
After 18 months, I’m going to get my life back!! This was nothing less than a miracle. This Dr just happened to be available, and I’m sure my surgeon (Dr Mark Trudy) had a hand in making this happen. The whole GI team did an excellent job.
So keep the faith. Miracles DO happen!
MollyMay 19, 2018 at 8:03 am #96989
On one hand I’ve been freaking out, but in a good way, because after almost two years where my cancer still doesn’t show up anywhere, my ONC decided its time to stop chemo. I asked what is going on, and he said he has no idea, and has never seen what he called a “remission” to be this long. So. I thought I was heading into a great spring and summer, BUT, I still had this horrible pain in my stomach that started during the last round of chemo.
Had an endoscopy on Thursday and now I’m freaking out in a bad way!! The “permanent metal stent” in my duodenum, is “mangled with ends that are fractured and open causing gastric irritation”. “Irritation”???? Seriously?? I have exposed metal, that looks like coils that are breaking apart in my stomach. The duodenum is blocked so I can’t eat anything, and even a liquid diet causes severe pain, so I’m slowly sipping water all day long. Thankfully I have the feeding tube so I’m not starving, but I have lost weight over the past few weeks as, well, it’s spring and there’s work to be done.
I’m not sure what the solution will be for this, but I’m going back to Mayo to discuss the options. The problem as I understand it, is that yes these stents are permanent, but I wasn’t suppose to live this long. Now I’m really worried about the other two stents.
With Memorial Day weekend coming up, I’m not sure how soon I can get in, So for now I’m conserving my energy by farming out the work so I can still do a few things I enjoy, like brushing my poor horse whose been feeling abandoned. The only good to come out of is that I’ve finally gotten my priorities straight. When energy is low, spend what you have, doing what you love.
MollyFebruary 11, 2018 at 12:24 pm #96622
Mary, thank you for the thoughtful response. I agree more research is needed on monitoring. My CA-19 has basically not changed in 1 1/2 years, except for known instances of inflammation. The Mayo surgeon said I was doing “remarkably well”, but I would really like to know WHY, I’m doing so well.
I also have no actual symptoms from the cancer. So all my troubles are related to the supposed “cure”. (Now, I’m whining again, when I need to be knocking on a thousand trees!) I’m just really beginning to question if I shouldn’t just go out and enjoy my life and worry about this when it actually becomes a problem. Of course, that could be too late.
What I need is to give myself a pep talk about eating better, managing my RBC better, so I feel better while I’m still doing chemo. We have also had just a really cold winter and by now it should sunny, warm, and even balmy out (yes, even Feb in MN gets balmy. It makes for the best hiking, skiing, walking, and sometimes just sitting out in the sun.) Makes me smile just thinking about it!
MollyFebruary 11, 2018 at 9:20 am #96616bglassModerator
It is good to hear from you. This year’s flu is not fun – glad you are over that and looking ahead.
It is really great news that your CCA is in hiding and not showing signs of progression. Surveillance to identify recurrence or spreading of this cancer is a topic that I personally believe merits additional research and attention. My doctor, in one of our many discussions on this topic, noted that additional scans or different types of scans (e.g., PET) need to be “clinically indicated” according to medical guidelines and for insurance to cover. This means you have to have, for example, symptoms or blood test results that point to cancer on the move. Understandable given the cost and radiation exposure involved in scans. In my case, however, the cancer was symptomless and found accidentally, so the idea I had to be showing symptoms for my doctors to more intensively search out this cancer was worrying. Your note expresses a similar concern.
My impression (not being a doctor) from reading and hearing patient stories is that CCA experiences are highly variable. For some, the cancer thankfully is very slow-moving. As a patient, one strategy is to monitor our well-being very carefully and bring any new developments (pain, coughing, unusual fatigue, etc.) to our doctors’ attention early on, even if they seem like something that in normal times we might have soldiered through with a few aspirin. This information will provide a basis for seeking additional testing or scans, if they make sense to do.
Best wishes that your path ahead is drama-free and back to normal.
Regards, MaryFebruary 11, 2018 at 7:09 am #96611
Sorry for taking so long to post another update.
I was at Mayo in December, they tested for the most common molecular traits for which they have an immunotherapy drug. Came back as nothing unusual.
Met with the surgeon regarding the stents and the possibility of a resection. Answer was NO. So basically, I’m on the feeding tube until they find a cure or I’m dead. The surgeon did say I look a lot better in person than I do on paper (my medical records are full of inaccuracies which really make me nuts), he also thought the good nutrition via the tube was making a difference, as far as being able to better fight disease and deal with treatments.
January threw me into a 2 week bout with the flu, and then I stupidly, had chemo, which threw me down another rabbit hole (RBC really low), then I had a problem with the feed tube becoming dislodged and creating a lot of pain, and bile. So now hopefully the drama is over and we can maybe start to get back to normal.
With all of this, there is GOOD NEWS. Still NOTHING showing up on the Ct scan. How can this be? I have all these mets in my omentum. The surgeon saw them back in Sept of 2016 and biopsied them, but they still don’t show up. As far as Mayo or anyone else can tell. my cancer has not grown. Not complaining mind you, just still wondering if I shouldn’t just ignore it until it shows up. Treatment’s getting old…….
MollyDecember 8, 2017 at 6:17 am #96222
Thank you both for sharing your experiences. I’m still waffling in indecision, which isn’t unusual. Ever since I can remember, in school, business, and life, if I didn’t act, it was because I hadn’t found the right answer yet. When I find the answer, I’ll know.
I do know I was very anxious being off chemo for 6 weeks. I kept envisioning the cancer cells floating through my body, creating more metastases. Of course I could already have many more than I know of, as I only know about the ones in my abdomen because the surgeon saw them when he tried to the Whipple.
My goal at the start of treatment was to “stay in the tail end of the (survival) curve” until they could find a cure. This is still my goal, I just need more info to help define the path forward. Hopefully the surgical consult and molecular testing will provide a direction.
Lastly, the horoscope on my birthday last June, said I would have “excellent luck at the end of 2017”. I’ve already had excellent luck, but maybe, just maybe, there is more to come.
Wishing you all the best of outcomes,
MollyDecember 7, 2017 at 3:49 pm #96218positivitySpectator
I just have to give a brief reply as I deal with this tough cancer.
I agree whether you have chemo or not, one still feels some kind of fatigue. My mom could not have chemo and still has extreme fatigue, loss of appetite, and at times seems hopeless. The big barrier is those darn stents, but we can’t do without which if one day there can be some incredible treatment where this can be controlled and the patient can be off stents. Those procedures are high risk also and sometimes not guaranteed, so it’s sometimes like hitting a roadblock. It seems the more stent procedures the less effective the stents have become which is extremely disappointing. It’s a tough journey, so it’s okay to express yourselves. We can only hope for some effective treatment to control this nasty condition. Also with genetic testing an adequate tissue sample is needed to be qualified and we did not meet that test, so that is eliminated for now. There is no way I would have her go through that risky biopsy again. No matter what turn, everything is risky in this condition, but we continue to manage even though there is no cure. Also, needed to comment on oncologists, you have to see several as obviously there will be the negative ones or ones hard to communicate or you get the feeling they have nothing to offer so they don’t want to work with patient.December 6, 2017 at 5:53 pm #96211middlesister1Moderator
Thank you for sharing the great update- a year of stable is pretty great and should be celebrated. And, it is not complaining- it’s venting and that is what we are here for. I also so admire you for taking control and questioning the status quo- you have to do that at times. Although the docs are wonderful, we were again told this week that there is no set treatment plan for my mother, and if you asked 5 doctors, you might get 5 different answers which would all be reasonable.
One note- when Mom had NED, they stopped chemo. Her ONC said how would we tell if it is working if there is nothing to measure? So, I am definitely not a doctor, but if they have determined that you have a slow-growing version, I would question cost/benefit of chemo. For Mom, being on or off chemo tremendously impacts her quality of life. Although chemo can be life-saving, it it a poison that is being put through the whole body- so second opinions are a good thing. Mom’s cancer is back, but I am not second guessing her doctors allowing her to go the 3 years without treatments; life was really good and I think 3 years of chemo would have done more harm than good.
CatherineDecember 5, 2017 at 1:22 pm #96207
Time for an update.
The GREAT NEWS is my cancer is still basically doing nothing. As far as anyone can tell, there has been no progression in a year (knock on wood, knock on wood, knock on wood (you get the drift).
But, back in September I found myself getting kind of depressed. I had been on chemo for a year, and decided I really needed a break. Fall in Minnesota is the best time of year, especially if you have a horse. I wanted to have the energy to fully enjoy it, without the weekly chemo crap. I ended up taking 6 weeks off, during which there was no progression (again knock on wood…), but I also didn’t feel that great. The energy didn’t return, the weather sucked, and I found myself getting even more depressed.
I decided a consultation at Mayo was in order to 1. get the molecular testing done and 2. to see if I had any other treatment options or even to see how much we might vary what I am doing. Since I don’t have “measureable disease” (nothing shows up on ct scans). I know I don’t qualify for any clinical trials, but are ct scans every 2 months necessary, and how often could I take a break from chemo?
I had a good meeting last week. No, I don’t need CT’s every 2 months, go 3-4 months and use the CA-19 as an indicator. I specifically asked if the chemo was actually doing anything, or is this just a very slow growing cancer. It is slow growing, but I could go off the chemo and then see what happens, monitoring the CA-19. Not sure I’m comfortable with that. Anybody have any thoughts?
But, going off chemo doesn’t really improve my quality of life that much. I’ve still got 2 stents in my duodenum that give me nasty back aches, and are the reason I have the feeding tube. I haven’t been able to eat since the first stent was put in, and they are permanent. The tube is a pain just because it ties me down, making it hard to go anywhere in the evening. I asked about a resection and about possibly getting rid of the stents. Not sure that can happen, but he suggested I meet with a surgeon, and that is scheduled for the end of December.
So once again, I feel terrible complaining, because even with such a terrible disease, I am still doing remarkably well, better than I ever expected, and because of this, it makes sense to try to resolve these other issues. And, I am still crossing my fingers that the molecular testing finds something.
MollyAugust 16, 2017 at 12:31 pm #95460
That is close! What an unexpected, pleasant surprise!
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