molly_may

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

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

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

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.