sos- for Lobular ladies with stomach lining spread. Can you help? My Markera jumped 100 pts.

[Bettybuckets]

hi Guys, I am hoping to leave on my much looked forward to overseas trip on (sept 2) to see all my friends while still well enough… but now worried that my weird stomach aches/ constipation could be stomach lining spread.

Last week,I texted my Dr that I would be willing to come in for endoscopy and he said not necessary… but asked me about my symptoms… not sure if that means he thinks I being a worried wart or that he thinks I prob do have stomach lining spread and will tell me so when I see him 2 days before me trip?! I don’t know cause he didn’t say. So I am on pins and needles… will I need to cancel last min?

ao my question to you all who have been here before me… did your symptoms come on a night? Mine weirdly does… last night I had N& V for a bit- first time so awful. And I imagined how awful it will be if I am abroad at a friends house with that!!! Still if I don’t go now- I may never see all my dear friends. One year ago I was living on waiheke island and came to USA for a visit… and then realized I needed to stay near my mom and children and so never got to say goodbye. So I am highly motivated to go on this trip ( by myself as hubby will be coaching football) but now am very nervous a about what might happen to my health during one month away? Also worried that onc will tell me that I need to switch to xeloda and I can’t be changing medicine and leave for overseas.. so prefer to just stay on Verzenio for the month till I get back. Did your stomach symptoms come out at night? Or only after a meal? My pain comes several hours after eating normal meals.. not feeling that early feeling of fullness that they said I would feel. But get a stomach ache around my belly button much later on. What was it like for you? There aren’t that many of us with this circumstances so I came to you all for help asi have some last min decision making to do.

Thank you in advance to any help!

Beth

[jersey-jazz]

You are reaching out to those that have had a similar experience. I only have a similar experience in terms of going back overseas to say goodby to the family and friends that perished during the last two years of Covid. We of the MBC team have these ups and downs of health. Meanwhile, we have to get on with our lives while we are still upright and it seems to me that your doctor needs to hep you get sorted out as best he can, as soon as possible, not two days before lift off. Can't your doctor see you sooner? Of course, it is important that you go when you are booked to go! I hope you have a wonderful reunion and that the health thing doesn't interfere too badly with your pleasure at seeing your friends and family in N. Z.

[Bettybuckets in reply to jersey-jazz]

Thank you so much miss Jersey jazz! You understand and that means a lot. He prob will help as he is so responsive but elderly. I know what he will say… he likes to “right the ship prior to it going over” so he prob wants to be proactive and will assess that this is “something” but I hear a lot of pts here say their onc won’t make a change with out seeing a scan. My scan 2 months ago was stable and nothing lit up from my many sites except for the neck node. But trh stomach lining could have been lurking in there doing it’s thing silently. I am more hopeful as stomach aches all night but finally better this morning.

[jersey-jazz in reply to Bettybuckets]

I m so glad for you! Because of my surgery in July to remove two more cancerous lesions from my swiss cheesed liver, my oncologist told me last week to wait for one more week before I go traveling alone in my motorhome. It has not left the property, all summer. Today, the week is up. I am packing and will be off tomorrow, early. Here's to us!

[Bettybuckets in reply to jersey-jazz]

Such a lovely story! I hoe I get to travel to nz next week too. Post some pretty views.. and where are you hoping to go?

[jersey-jazz in reply to Bettybuckets]

I have driven back this afternoon and I was too busy to take pictures. I went to Assateague Island National Seashore with my motorhome for six days. After soaking up the sun and getting my life enhanced by the sight of the ocean and the sound of the waves, I went home to New Jersey for two days, unpacked the camper, cooked, baked, packed up the car and traveled up to the Adirondacks in New York State, to meet up with my dear friend and her family. We were on a lake by Tupper Lake. The other evening, we got into canoes and kayacks early to see the moon rise from being paper to a huge bright globe in the sky. I now have to take off my filthy clothes and get in the bathtub to prepare for a gathering this evening, at my daughter's. That is, if I don't fall asleep before that. I really think that I am feeling better since the little cancer buggers were forcibly removed from my liver.

[Georgiamjb]

My experience with ILC in my stomach lining was different. I was vomiting most days in the morning, but thought it was due to the ibrance. I learned how to work around it the best that I could but after an endoscopy and biopsy (months later) learned it was ILC. My doctor didn't change my meds and in the end the Ibrance failed (after 12 months) and my marker numbers started shooting up. I encourage you to see what your doctor suggests since everybody is different! I hope you decide to take your trip! -Suzanne

[Bettybuckets in reply to Georgiamjb]

Hi Suzanne thank you for writing! I can’t believe you were able to muscle through vomiting daily! I vomited just once and it was awful! Please tell me how you managed? Prilosec or any meds? Also it finally just stopped? And sis they put you on xeloda which is prob up next for me after Ibrance and now Verzenio.

[Hopeful4Cure]

Yes, here too. Live your life Beth. I would have thought that your doc would have you come in early to see, but then again, your stomach aches may just be digestive issues, depending what you eat. I have had pain around my mid section and I thought too that it was something that spread and my doc did the tummy test listening for the thump or no hollow sound and it was nothing, just digestive issues. Whatever the case may be, when you see your doc 2 days prior, and whatever he/she says, what may be something or nothing, GO ON YOUR TRIP WHILE YOU ARE STILL UPRIGHT and enjoy your time, no regrets dear, that is how you need to live your life, in the here and now and be good to yourself, treat yourself well, it makes a world of difference. Hugs and blessings Paula

[Bettybuckets in reply to Hopeful4Cure]

Paula- just what I needed to hear..so helpful and I hope my old oncologist knows how to do that thump belly test and give me the all clear! I emailed last night and he is such a dear ia squeezing me in 2 days! All will be figured out. But I agree I need to keep living! Nice post thank you for taking the time to write!

[Hopeful4Cure]

Oh, it is my pleasure to help. Just trying to stay positive too. It is good energy. You see, what you did my contacting your you doc, he squeezed you in and now you will hopefully have peace of mind. Hang in there, I know the anxiety you are facing - we all know too well, when we wait for the blood work and tm's, pet, tac/cat/gamma and other scan results.

[KMBL_]

I would definitely go on your trip and wouldn’t switch meds before. When my stomach symptoms popped up, it was October 2018. I didn’t have the endoscopy until April if 2019. I lost 17 pounds but never vomited. Still haven’t vomited to this day. Since I rely heavily on my tumor marker numbers, I watch what direction they’re going. I say if they go up three months in a row by more than just a few points, it’s time to explore why. Have a great time.

[Bettybuckets in reply to KMBL_]

More than a few points? Mine went from 140 240 350! But I am glad to hear you weathered the year figuring things out- sorry about the weight loss. What have you been on since stomach lining Ca dx? Anything other than xeloda which seems popular?

[KMBL_ in reply to Bettybuckets]

I definitely would get things checked if they went up that much for sure. I was on Ibrance and Letrozole for two years. My tumor markers did not fall very much on them, and when the symptoms started again, I chose to switch to Xeloda. I wasn’t willing to wait to see if we would ever find out it progressed because nothing ever shows on CT or PET scans. On those I look like I have absolutely no cancer. I don’t trust imaging for me.

If you’re interested, I told my story to the Lobular Breast Cancer Alliance, and it’s being published on their website tomorrow.

[Bettybuckets in reply to KMBL_]

I would love to read your story when it is available. Csn you post it so we can all see it?

[KMBL_ in reply to Bettybuckets]

Yes, absolutely. Do you want me to post the link here or start a new thread?

[Bettybuckets in reply to KMBL_]

I think it would help more people if you post a new thread

[KMBL_ in reply to Bettybuckets]

I’ll do that. Thank you.

[Nocillo]

We’ll, I don’t want to be a downer but I vomited every time I ate anything and lost so much blood in my stool from the stomach tumors that I had absolutely NO strength and couldn’t get out of bed. I lost 45 lbs. If I were you I would insist on an endoscopy. Then you know. The mind games of not knowing consume us. None of my doctors wanted to do one either and I could have been saved so much pain and anguish so much earlier. Is there any way to re-schedule your trip? I DO understand the purpose of it, but right now, you are priority number one. Wishing you the best.

[Bettybuckets in reply to Nocillo]

Hi Noc- please tell me more about the journey since losing 45 lbs? And having a serious GI bleed? Did they cut it out with surgery? Find a drug that held it all in check? That seems so life threatening for them to drag their feet on scoping you?!!

[Nocillo in reply to Bettybuckets]

No surgery at all. Controlled with Ibrance and Tamoxifen. It dragged on for a month. I went to the ER 3 times because none of my doctors were doing anything! It was SO frustrating! But a change of meds made all the difference. I have new doctors now. And I’ve gained back a lot of the weight. I thought I could keep some of it off, but it just keeps creeping back. But if I’m eating and still doing well, I’ll take it! Please let us know what you decide.

[Georgiamjb]

Hi again - I am prone to nausea so not everybody will have that symptom. For me, ginger Tummy Drops, eating small meals often and Zophran does the job. I rarely have that side effect now from Xeloda and am so thankful!

[Bettybuckets in reply to Georgiamjb]

Ginger Tummy drops sound yum will try. Thank you!

[Fiercefighter13]

Hi there Bettybuckets!! My lobular spread to my stomach lining, and PET never lit up, but CT showed mild smooth thickening of the stomach lining, and markers were shooting up. My doctor started searching when the markers started going up, and with the CT results, ordered an endoscopy which confirmed. I never had symptoms though, and I think the symptoms may vary depending on our own bodies. If there is any chance of stomach spread it's important to have an endoscopy and colonoscopy when lobular is involved. BUT, I really think you should go on your trip!! In the grand scheme of things, one month of joy and seeing loved ones is important. If you have to have an endoscopy and/or colonoscopy try to schedule it for when you get back from your trip. These tests take time to get scheduled anyway, so you might as well get them scheduled for right after your trip and if you have to change meds then you can do that after the tests.......then you get the best of both worlds, your trip, visit with your family and friends, and the medical care you are thinking you may need. Also, just a footnote, Verzenio can cause the symptoms you say you are having......hopefully that bit of news gives you some relief? Some people get nausea and vomiting from it, and not the lower GI issues. I hope you go on your trip, and I hope it's wonderful!!

[Bettybuckets in reply to Fiercefighter13]

Such good advice! I think that is what we shoot for. I’m going to see the dr in the am. I am much more calm thanks to all the wonderful posts and especially this one very good advice!