molly_may
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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…….
Molly
Positivity,
I’m so very sorry for this recent turn of events. Hopefully they can find some way to make your Mom comfortable.
My thoughts and prayers are with you.
Molly
Gavin,
I just used the generic anti-itch cream from Wal-Mart. It’s 1% Hydrocortisone, with aloe. I think the new Aspercreme/Lidicaine lotion would also work, but its more expensive.
I hope you can find it there.
Molly
Hi Positivity,
Mayo told me to get a metal stent put in after my aborted Whipple operation (because of mets). The ONC’s there said to get it before I started chemo. Before this I was having the same kind of problems as your Mom, with numerous ercp’s due to clogged stents, and having to have them replaced every 6-8 weeks.
My stent is in the bile duct, and my bilirubin has been very low ever since it was put in. I have an “expanding stent” that expands once its in place, and then the tissue grows into it, so the chance of migration goes down after a few days. I understand they may have to be periodically cleaned out, usually after 7-8 months, but I have yet to have that problem and its been over a year.
It is a permanent stent, but I believe if I ever qualified for a Whipple, it would come out because it is in the part of the bile duct that they would have taken out. (I’ll ask the surgeon this at my consult on the 21st)
No one mentioned metal vs plastic based on prognosis or life expectancy, but it does kind of make sense if no surgery is to be performed, to eliminate the need for a procedure to replace every 3 months, especially during chemo.
Lastly, if I remember right, anti-itch cream did help with the itching. Seems it would settle in my feet (and there is a reason for that, I just can’t remember what it is), but the cream did help take the itch away.
The only thing I would do differently, is to make sure the Dr. knows I am only agreeing to the placement of a bile duct stent. If they feel other stents are needed, they should abort and just put in a plastic stent. It was his wrong assumptions (and, sorry, massive ego that told him he is “never wrong”) that turned this whole thing into a huge problem. BUT, by creating the blockage with the stent in the duodenum, I went down to 89lbs, which led me to the feeding tube, that now has me up 15lbs (to my normal weight), and the ONC at Mayo two weeks ago told me I looked “perfectly healthy”, and I do. Good nutrition makes a difference.
Good luck to you and your Mom,
Molly
A possible side effect of ERCP is pancreatitis, which could make it worse. Also the process creates a lot of inflammation, which could be causing dilation in the ducts. And infection is always a possibility.
The one stent I have that doesn’t give me any problems is the permanent metal stent in my bile duct. It was put in the first part of October 2016, and has been totally trouble free. (My stent problems are in the duodenum. The Dr decided I was “full of cancer” and had tumors pressing on the duodenum- not true at all. It was inflammation from multiple ercp/eus procedures. Note: it took until December for all of the inflammation to go away (per the ct scan) from all of the procedures from June- Oct.)
The benefit of the metal stent is, that once its in, you’re done. No more ERCP’s.
I hope you find an answer soon. Jaundice is so miserable.
Molly
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,
Molly
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.
Molly
I LOVE it!
I have a dog, several cats and a horse, but it’s my 23lb black cat, with one eye, and 1/2 of one ear gone, that I took in as a stray (after 6 months of playing “catch me if you can!”). who has become my “Care-giver Cat”. Since I started chemo, he has been at my side. He follows me around the house, and sleeps next to my head at night, which I didn’t really like at first ( I’m not really a cat person), but whenever I wake up during the night, I look over and can see him watching me.
I can’t explain the change in his behavior other than maybe a “I saved him, and now he’s going to save me”? Its now very comforting knowing he cares.
Molly
Catherine,
I get so much strength and hope from you and your Mom, for as Gavin says, you are both fighters, which is what we all need to be. Its awesome that she is here to see your daughter get her PhD, and I wish you both the best on this new journey down what I hope will be a less bumpy road.
Sunshine and hugs,
Molly
Hi,
I would ask how long you can expect to be on chemo, and whether or not to get a port. The process of infusing the chemo through arm veins, eventually damages the veins (for me it was after 3 mths), making it difficult to get blood samples and to find a vein to use for the infusions. The veins end up almost permanently damaged making it difficult to get simple blood samples. A port helps you avoid these problems.
Also, depending on the type of chemo, I would ask about permanent side effects, and how they will monitor the side effects vs benefits. I was on cisplatin for 3 months, and ended up with permanent hearing damage. I changed oncologists after 3 months, and the new one immediately took me off cisplatin, saying it wasn’t working. If it was working, we would have seen a result the first month. Apparently my first ONC didn’t know this.
Good luck,
Molly
Isn’t this bazaar?? I have tried to see if it carries over to other things like jigsaw puzzles or Jeopardy (which I do watch everyday), but no, its just the crossword puzzle. I used to write short stories, and can’t write at all any more, and most days with “chemo brain”, I’m lucky I don’t get lost just going to the kitchen.
It does make me wonder what a brain scan would look like, you remember the old “your brain on drugs” commercials with the fried egg? LOL.
Molly
Silentk,
I am so very sorry for what you are going through. And Rod, my heartfelt condolences to you.
I learned the hard way that hospital chaplains are excellent resources when dealing with family issues involving serious illness (and death). they are experts in family dynamics, and are very good listeners.
You don’t have to be a patient to talk to them.
they were able to give me a whole different perspective, as well as good advise on how to handle a bad situation, and were a great help in dealing with my parent’s final illnesses.Thinking of you, and wishing you peace.
Catherine,
Two thoughts, and please keep in mind that I know “nothing”.
Why 2 weeks to get the PET? The only good thing that crazy surgeon I saw did, was to order a PET, so at least we would have an idea of whether or not my ovarian cyst was cancerous. It would have taken a week to schedule at my local hospital (who relies on a mobile unit), so instead I went to another place where I could get in the next day, with results the following day. I just had to drive further.
Secondly, if this is “floating”, maybe it could be removed the same way they removed my cyst. They made a small laparoscopic incision, used a camera to look around, and then “bagged” the cyst and pulled it out whole. No need to contaminate or potentially “seed” the area with biopsies, and net-net, no matter what, don’t you think it needs to come out?
At any rate, it would seem the PET is the place to start rather than more needle biopsies.
If I’m out in left field (as usual), PLEASE disregard this as you (and others) know so much more about all of this stuff than I do.
Wishing you the best,
MollyHi Hopeseeker,
How did they figure out she was allergic to Gemzar?
I have had a bad cough, and SOB since about 2 months after starting Gemzar. I also have food allergies, including a food additive that is in the feeding tube formula, so I thought that was the problem. My allergy is more of an intolerance, and once I reach a certain amount, then I have breathing problems, but have never had the bad cough.
Question: Is she on any protin pump inhibitors (acid reducers like Prilosec)? The reason I ask, is that the anti-nausea meds they give via IV, cause your stomach acid to spike, and my Dr was also giving me a PPI to combat the effect. BUT when you reduce stomach acid, you increase the effect of allergies, especially “intolerances” like I have. I can have a little of something, but too much and my throat starts to close- not to the point of anaphylactic shock, but enough to restrict my airway.
My other thought is that the excess acid could be making my acid reflux worse, which causes an inflamed larynx, which also makes me cough and be SOB.
Right now I’m trying Zantac (which reduces acid by about 85%, verses Prilosec that is 95%), and then using Gaviscon at bedtime, and the cough and SOB is getting better, but I still have restriction in my throat.
I was recently off chemo for 5 weeks, and the cough definitely got better. I asked my ONC about this as a “side-effect” and he said he and never heard of anyone having this problem, which led me back to looking at my own allergy/reflux problems. I did consider that maybe the Gemzar was making my allergies worse, so, I am very interested in how they determined that she was allergic to Gemzar.
Thanks!
Molly
