Endoscopy today
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Sunshine, I feel your stress and I hope it is the Ibrance and there is something else for you to take. I never took any meds until tamoxifen, then, arimidex. After 5 years, drug free….until DH started his cancer journey…and then this year…OY on the meds….FOR ME! Stress, blah, blah, blah…and my cat will probably be put down this week. 😭
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The doc that did my endoscopy phoned today for followup on the swallow. She said if I am not having any issues, I can follow up in 3-5 years. If I have issues, to go to a GI (if it feels higher up in the esophagus) as they aren't able to safely do much closer to the windpipe. So far, so good. I also have an "inlet cell" patch and she said that may be contributing to feeling that food stuck feeling, but so far, so good. The patch is a(n) hereditary odd occurrence that rarely causes issues but can cause that feeling of food stuck…so I'm good to go. I hope you ladies get some relief. I've been thinking about you and feel a sister-hood.
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Sunshine, Hopefully the break from Ibrance will help the swallowing problems and cough. The large number of subspecialty doctors does make it difficult to get medical advice. Fortunately my pulmonologist referred me to a local palliative doctor which has helped since he can contact any of my doctors to get a quick response and deal with side effects no matter what the cause.
Wallycat, Good news that you are in the clear if issues don't return. I had never heard of an inlet cell patch; it's good that it rarely causes permanent issues. I'm so sorry about your cat. My daughter always referred to the cat that grew up with her as her sister showing how much a part of the family kitties are.
I got 3 hours of uninterrupted sleep last night so it looks like things are improving a bit. In addition to the vancomycin I'm taking probiotic/nutritional powders sent by my GI doctor, have stopped all meds other than inhaled steroids, and am still on liquids. On Friday I have a video visit with the palliative doc. It seems strange since the local hospital is a five minute walk from my house but I understand why they don't want me there.
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Wallycat, I posted elsewhere, but I'm so sorry about your cat. It's so sad…
maggie, I hope this helps, too. Yesterday, there was blood in the toilet (SERIOUSLY???) but I'm hoping it was just a hemorrhoid. It was OK this morning. Congrats on getting 3 hours of uninterrupted sleep. Thats a big deal.
I sometimes like the video visits. If they don't need to take vitals and just need to discuss symptoms, etc., then I'm fine with it.
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Things seem to be improving. I can begin eating foods high in soluble fiber. Oatmeal with nectarines, sweet potatoes and lima beans will be on today's menu. If this goes well I can add yogurt, kefir, sauerkraut and other fermented foods when I finish the vancomycin next week. The strategy is to clear my system of the bacteria and get the gut working again. At least a foundation at the big hospital is providing the probiotic/vitamin powders since they are not covered by insurance. As trishyla1 said the most important thing is making sure the bacteria does not get hold of the gut again.
Sunshine, I hope you are able to eat more and the coughing has lessened. Hopefully no more blood either. You surely don't want another scope for that.
Wallycat, I hope you are doing OK with all that is going on in your life now.
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Thank you for the condolences, ladies. We go back to Seattle for DH's second treatment on Monday; hopeful the temps are much cooler this time. His PSA is down to 64, which is amazing. His first line of treatment stopped working, so this is all good, albeit a lot of work to get there and back, keep our distance since he is radioactive for 3-4 days.
Sunshine, hemorrhoids can be really bloody. If it is bright blood, then the odds are it is that or a fissure. Good luck.
Maggie, so great to hear you are able to hold food in and things are improving. Definitely a great trajectory!
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No more blood, so I think that was a one-time deal. Weird, but hopefully just one time.
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I resumed my Ibrance yesterday and landed back in Urgent Care with vomiting and dehydration.
will post more later when I’m at my computer and not on my phone.0 -
Oh no, Sunshine! This is starting to look like a reaction to Ibrance. I hope some doctor can come up with a solution.
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Oh no!! At least we think we know the cause. I second all Maggie posted. Hope you get home soon and can figure something out. Appreciate your updates!
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I decided that I am NOT taking Ibrance any more. I told my MO via the portal.
I did see my PCP today. She listened, took copious notes and made some suggestions for making swallowing easier. She doesn't think it's GERD, based on my endoscopy, but just in case said I could try Pepcid AC at night, and then maybe add something like Flonase to see if post-nasal drip is contributing to the nighttime coughing. She thinks that September 11 is too far out for the manometry study and is going to try to get it moved up.
She's a dynamo!
I was hoping for a better night last night but I ended up starting to cough just after midnight so I got up and went into the den to sleep. Fingers crossed for tonight.
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Sunshine, Your PCP came up with some good ideas to help your issues. I'm glad that she is advocating for an earlier manometry appointment.
You will be better off without the Ibrance. Don't doctors pay attention to the side effect list that comes with every medication? Even if it's helpful for your bone mets it's no good if you waste away because of malnutrition and lack of sleep. Hopefully your MO will have a more tolerable alternative for you.
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Just checking in with you, ladies, and hopeful everyone is doing well. I was put on Lexapro for anxiety (DH has metastatic prostate cancer) but I see it is off label for esophageal spasms; I've not had any issues since I started that…win-win? Sorry if I'm repeating. I posted this elsewhere.
Again, hopeful you gals are doing well.
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Oh, great, wallycat! Just what you need to add to the SEs. I hope the spasms don't happen or if they do, that they're very mild.
I have my repeat endo scheduled. EGD they call it: esophagogastroduodenoscopy, flexible, transoral; with biopsy, single or multiple. Not scheduled until November - will keep calling to try to get in earlier.
maggie, I responded to your PM. Hopefully it shows up. 😯
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Wallycat, it is great that lexapro has the SE of decreasing esophageal spasms. I hope it is also doing what it was prescribed for and your DH is responding well to his treatment.
Sunshine, hopefully you can get in for the repeat EGD much sooner. In the meantime ask your other doctors to come up with something to help the cough and swallowing issues even if the cause is unknown. Thanks for your response to my PM.
At my gastro appointment I asked how much higher a dose of omeprazole I would need if I started taking nsaids for my arthritis which is getting worse. The doctor said he prescribes CoQ10 for liver inflammation/IBS and some of those patients told him it helps their arthritis. I started taking it and while I can't play the piano at least I can sew a button on again. I'm really happy since the side effects of long term PPIs are dire.
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Sunshine, I read your post on the other thread and my heart is heavy. I'm so sorry for that news.
I'm thinking about you and hopeful.
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Sunshine, I’m so sorry that the cause of your dysphagia turned out to be esophageal mets (rather unusual.) Hopefully the chemoradiation will knock them out.
I had an NG tube for a few weeks. It took a bit of management but I could still drink some liquids. PEG/J tubes are used for longer periods but they don’t preclude all eating/drinking and are not always permanent. Hugs and the best possible outcome for you.
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wally and maggie, thank you. The GI doc did acknowledge that while I don't need a feeding tube right now, I may need one should radiation damage my esophagus. He says as long as I get enough hydration and nutrition I can avoid it. He also wants to avoid putting in a stent as he said his patients find them to be uncomfortable and they can migrate. So, I'll keep up with the soft/puree/liquids and make sure I'm getting the 45 grams of protein each day.
I'm hoping to hear from either my MO or RO, or both tomorrow.
Carol
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Sunshine, it seems like you have a really good GI doc!
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maggie, yes, he is great. He explained the procedure before he did it, came and talked to me afterwards (after I was fully awake) and then was so clear when he called me on the phone yesterday. I'm so thankful for good care!
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Just popping in to say I am thinking of you, ladies, and how grateful I was when I posted this that there were replies and comfort.
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Hi @wallycat, Thank you for your kind words. I was sorry to see that your DH is dealing with ONJ on top of everything else. It was about three years ago that an oral surgeon diagnosed my breast cancer when extracting a molar didn't help an infected jaw. A bone biopsy showed osteomyelitis and when high powered oral antibiotics did nothing he used his medical training to find the 3.2 cm tumor that didn't show on mammograms. I ended up doing four weeks of IV antibiotics through a picc line to clear the infection since cancer lowers antibiotic effectiveness. Hopefully your oral surgeon will come up with a tolerable treatment to lessen your DH's pain. Take care of yourself, too.
Hopefully your radiation will be approved soon @sunshine99. When you have an unusual diagnosis insurance companies seem to deny on the basis of medical necessity or "experimental" treatment. Over the past five years I have filed six successful patient appeals. If your doctors keep running up against a stone wall you can PM me and I'll help point you in the right direction. I hope you can enjoy your favorite holiday foods.
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❤️
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Thank you, Maggie. It sounds like you had an amazing oral surgeon! I’m glad he was so persistent.
i just got a voicemail that “something” was approved. I’m hoping it’s the radiation, but of course I can only call back M-F excluding holidays. Tuesday it is, I guess.
i caught a bug over Christmas. I’m hoping it’s just a cold. Home test was negative for COVID but I don’t trust those things. Too many user error opportunities. Will call my MO on Tuesday.
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Hi Sunshine, I really hope the mystery voicemail message is approval for your radiation. If it is the wait for Tuesday is worth it.
I'm sorry you picked up a bug over Christmas. It puts a bit of a damper on your holiday activities. Hopefully you will feel better soon. I'm never happy to hear of another's illness but it stops me feeling sorry for myself due to pulmonologist-recommended indoor isolation. The wait for warmer weather to socialize outside is worth preserving my lung function.
Wallycat, I hope your DH is responding well to his ONJ treatment.
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maggie15, the voicemail was indeed letting me know the radiation was approved. Finally! I'll call them tomorrow morning, the 2nd, to get it scheduled.
The stupid thing about being sick is worrying about whether or not it will interfere with treatment. Oh, the joys. haha
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