molly_may

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  • in reply to: Gastric obstructions more than one year after surgery? #97194
    molly_may
    Spectator

    Hi Ali,

    I ‘ve had a stent for 18 mths, and it does change what and how much you are able to eat. Your stomach still empties slowly, so you do need to eat very small meals. I could usually do a larger breakfast, but then a smaller lunch, and dinner was maybe just a glass of milk. I was able to eat like a spinach omelet on toast, provided I used lots of butter so the toast was soft. I could do cocoa and toast, if I dip the toast in the cocoa. For lunch I could do a couple pieces of string cheese, and applesauce, or a spinach salad with tomatoes, cheese and hard boiled egg. You need to cut it into small pieces and chew very well. I also did a lot of juice, I really don’t like smoothies, but that’s an option, as is soups, spaghetti, and any kind of hot dish.

    Basically, its take small bites and chew really well.  My problem was that I could not eat enough to keep my weight up, so I got a feeding tube that goes through the stent into my intestines. I am still able to eat during the day, but run the feedings at night. This way I gained back all of the weight I had lost, and am able to maintain my weight, while staying active.

    A few months ago, the stent started to migrate and fracture leaving a “mangled, fractured stent with open ends”, basically a mangled mess of metal in my stomach. My stent is a metal, uncovered stent that cannot be removed without major Whipple like surgery. I just had a gastric bypass done endoscopically, which means a new outlet between my stomach and intestine, via a new covered stent. While this did not require surgery, if your Mom is able to have a gastric bypass (surgically), that would probably be your best long term option. Supposedly, I will be able to eat normal with my new stent, but that still remains to be seen.

    Keep asking questions and keep pushing for answers.

    Good luck,

    Molly

     

     

    in reply to: chemo & “metal mouth” and appetite #97129
    molly_may
    Spectator

    I have not tasted it. I can say it doesn’t smell appetizing. I think if nothing else tastes good, this would taste worse.

    I did see Ensure has come out with low sugar/low fat versions. Not as many calories of course, but still a lot of protein and vitamins.

    Molly

     

    in reply to: chemo & “metal mouth” and appetite #97122
    molly_may
    Spectator

    I’m going to put this out there because it has worked well for me. What they are calling “early satiety”, is actually a slow emptying of your stomach due to the pressure on the small intestine. You might notice that its easier to eat more in the morning, but that rapidly declines throughout the day as the stomach remains full. I could eat a decent breakfast, but almost nothing after that, and was rapidly losing weight that I couldn’t afford to lose.

    My solution was to get a jejunal feeding tube (yes this sounds bad, BUT I regained the weight I lost and my weight has stayed stable since then). A jejunal tube puts the food into your intestine, past the blockage. You can still eat normally if you want (or can). The feedings occur overnight. The pump makes an annoying sound, but I wrap it in a thick hand towel and a small foam cooler, and then I can barely hear it.

    My ONC was TOTALLY against this (I still have no idea why). I went through my primary care Dr, and my insurance covered it. People seem to die of starvation with this cancer, in some cases long before the cancer itself kills them. And how do you fight without good nutrition?? With the tube, even if you’re nauseous, you can still get the nutrition you need.

    I have been on it for 18 months, and just got a bypass that will probably allow me to go back to eating enough without the supplemental feedings. I’ve also done very well in terms of no progression. Is it related? I don’t know, but my Dr says good nutrition certainly can’t hurt. I use Nestlé’s “Compleat” formula, which is all real food, no sugar. You can also blend your own, if you’re comfortable doing that.

    The tube is not as bad as it sounds and it certainly saved my life. For the most part you can still do most things. I’m pretty active caring for my horse, trail riding, moving hay etc. The process for getting the tube involves getting a hole in your stomach, which hurts like a son of a gun for about two weeks (imagine grabbing a little fold of skin and pinching it), and the tube needs to be changed every 3 months, which is painless and takes about 20 minutes. Other than swimming, I can’t think of anything I haven’t been able to do.

    Because of the supplemental feedings, I have the energy to live my life, while going through chemo or whatever. Its something you might want to look into.

    I wish you the best,

    Molly

     

    in reply to: Intro (finally) On My first anniversary…. #97094
    molly_may
    Spectator

    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!

    Molly

     

    in reply to: Intro (finally) On My first anniversary…. #97088
    molly_may
    Spectator

    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.

    Molly

    in reply to: Intro (finally) On My first anniversary…. #97065
    molly_may
    Spectator

    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!

    Molly

    in reply to: Intro (finally) On My first anniversary…. #96989
    molly_may
    Spectator

    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.

    Molly

     

    in reply to: Scan results May 14,2018 #96975
    molly_may
    Spectator

    Sorry to hear this, and yes, the results are confusing. I think you should email or do a follow up call to your ONC for some kind of an explanation. He may not know, but it would be interesting to learn how often this kind of thing happens. It’s good that he isn’t too worried about it, but if I was you, I would push for more info- good or bad- because July is a long time to be wondering.

    I wish you the best.

    Molly

    in reply to: Chemo toxicity?? #96923
    molly_may
    Spectator

    Each week, fusion seemed to trigger the symptoms, which would start 2-3 hours after fusion, and then would go away 3-4 days later, only to start again with the next fusion, only more severe. One explanation I was given was possible drug interaction, but nothing has been changed.

    Now after 4 weeks, I’m left with just the stomach pain. My GP suggested zantac (I’ve got food allergies so I can’t take anything stronger). It does make me a little (or a lot) crazy that my ONC provides no direction whatsoever when it comes to side effects or other issues, when I would think he should know best if its a chemo related problem.

    We’re going to stop treatment now (due to the total lack of progression in the past two years ((Yay!!)), but I would like to figure this out before I need to start up again.

    Molly

    molly_may
    Spectator

    You are off to an excellent start, as you learned very quickly that you must be your own advocate, and do not accept anything less than working with providers that are willing and able to give you answers. I am just astounded by the incompetence I have seen in the medical profession. I had to laugh at the “pancreas or cc” confusion, as my own ONC, still after all this time, refers to mine as pancreatic cancer, and when I correct him, he says “same difference”. No, its NOT. Anyway, you do need to “drive your own bus”. If you find good people, stick with them, and accept nothing less than their best. If they can’t answer your questions, keep asking for someone who can.

    Lastly, the statistics are outdated. I had two ONC’s in the room when I was given those statistics. The second one said, “wait, there  are more options and more therapies now , plus clinical trials”.  I don’t know why they feel compelled to give you those numbers, but we have ALL heard them, and MANY of us are alive, and proving them wrong DAILY (for me, this was almost two years ago and I’m still going strong.)

    Hang tough, and keep up the fight.

    Molly

    in reply to: Process for Second Opinions or more? #96829
    molly_may
    Spectator

    You should ask your ins Co what they require. Mine does require a referral from my primary care physician, which she is very happy to give.  Some companies have different rules regarding deductibles, co-pays etc if you are going to be out of network. In the end you need to do whatever you need to do, but at least you’ll have all of the information. The last thing you need is more (bad) surprises.

    I can generally be seen within a week or two of my doctor doing the referral. It can take a week or two to get medical records sent (and reviewed), and for the other provider to decide just what exactly they can do for you so they can set up your appointment accordingly. My insurance requires that I have certain tests done at home (CT’s and MRI’s), and that can also cause delays.

    It is a process, but you will get there.

    Best of luck to you,

    Molly

     

    in reply to: “Maintenance dose” of Gemzar?? #96748
    molly_may
    Spectator

    Thanks Mary, for making such good sense. So far it seems I’ve been left to “figure it out” verses my ONC actually addressing the issues, and its getting frustrating. What’s worse is it seems he keeps changing the orders so we keep going back to what I know doesn’t work. It’s to the point where I have to confirm the premeds with the nurse at the start of each session.

    It makes much more sense to say “Okay, this drug works for nausea, but makes me really tired. Is there something else we can try or try a lower dose?” and keep pushing back on him to find a fix. He doesn’t care too much about side effects and tends to dismiss them as unimportant.

    Thanks for helping me “refocus” in a much more positive way.

    Molly

    in reply to: I was mistaken #96708
    molly_may
    Spectator

    Shortness of breathe can also be caused by inflamed vocal chords. The vocal chords sit at the top of your airway and can become inflamed from acid reflux, which you may not even know you have (silent reflux). The steroids in the premeds for chemo trigger stomach acid, and can cause or make this problem worse. I’ve had a real problem with this since starting chemo. and it’s also made worse by an over-production of bile in your stomach. If it feels like you can’t get air IN, then its likely a vocal chord problem. Unfortunately, theres no real cure other than controlling the stomach acid. I can’t take a lot of the acid reducer medications, but find sucking on Gaviscon helps. There are also breathing exercises that help the chords relax.

    If my legs feel tired, its probably due to low blood counts, but if I feel like I can’t get a breathe, then its in my throat. For me this became a real quality of life issue. I can do stuff if I’m tired, but tired AND can’t breathe is a double-whammy.

    Anyway, if the allergy meds don’t work, try some antacids.

    in reply to: Replace of Stent #96672
    molly_may
    Spectator

    I have had a permanent metal stent (it can’t be removed) for a year and a half now, and have never had any problems with it. They say it could clog, and then they would go in an clean it out, but that hasn’t happened to me.

    Mayo recommended this stent after I couldn’t have a whipple. and yes, the ERCP’s are very hard on you, causing much inflammation and it seems to get worse every time they go in. This stent has eliminated those problems.

    Good luck to you.

    Molly

     

     

    in reply to: Intro (finally) On My first anniversary…. #96622
    molly_may
    Spectator

    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!

    Molly

Viewing 15 posts - 1 through 15 (of 37 total)