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Topic: Mets to GI tract?

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Sep 18, 2019 02:29PM

pesky904 wrote:

I have to schedule an endoscopic biopsy due to symptoms of concern to my oncologist that have not resolved.

Anyone experienced Mets to the GI tract? I’ve read that the main primaries that metastasize to the GI tract are melanoma and breast. My onc said she has seen a few of her past triple negative patients metastasize to this area, though it’s not as common as lung or bone.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Oct 23, 2019 07:14PM Yogatyme wrote:

Pesky, I rechecked the Pink Foundation and it is actually called Pretty in Pink Foundation and could only find info for North Carolina but the article also spoke of a chapter in California, so I’m not sure if it is a national program. If it’s not, it should be!! Google may have just shown NC bc that’s where I live.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Oct 27, 2019 03:23PM pesky904 wrote:

Thanks, yogatyme. I used to live in North Carolina!


The plot thickens for my situation. My blood work showed very low ferritin, which explains my many huge bruises, and pretty much everything else is low too. Folate, B12...doesn’t seem like I’m absorbing nutrients. And my white and red cells have both dropped to just below normal. Absolute neutrophils and absolute lymphocytes both just a tick below normal. So no wonder I’ve been so horribly fatigued. Everything is “off.”

Haven’t gotten my tumor marker results back yet but I’ll assume those will be normal. They were all normal range even back when I had an almost 10 cm tumor. And I know they’re not super reliable

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Oct 27, 2019 08:03PM - edited Oct 27, 2019 08:03PM by KBL

I can totally relate. All my numbers have been off for quite a while. I truly hope you get an answer soon. The not knowing is worse sometimes. At least when you know what's causing everything, you can do what needs to be done to help it.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Oct 28, 2019 08:23AM pesky904 wrote:

My numbers had been getting better for the last few visits, but now have suddenly all sunk down again. So frustrating, since I eat so healthy and drag myself to the gym at least 5 days a week.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 1, 2019 01:13PM pesky904 wrote:

Has my endoscopy this morning. They took multiple samples to biopsy from the esophagus all along to the duodenum. Should get results next week.

I still have to schedule the biopsy for the thickened endometrium, but one thing at a time..

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 1, 2019 06:54PM KBL wrote:

So glad to hear you finally had it. I know after I had both of mine, I would have never known they biopsied anything. They were both very easy. I know it’s going to be hard to wait for the results.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 11, 2019 07:04PM pesky904 wrote:

pathology report showed up on my patient portal today, but just a truncated version. I tested negative for h. Pylori and it looks like the GI doc thinks I have gastritis.

I know they only biopsy the top layer and mets are often deeper in the stomach lining but there were no apparent tumors so I guess I’ll just assume they’re confident- same local hospital that messed up my bone scan so I have trouble feeling totally 100% confident in them anymore.

I have a follow up appointment on Friday. After that I guess I have to address the gyn’s message that he wants me to schedule a biopsy for the thickened endometrium.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 12, 2019 07:29PM KBL wrote:

Thank you for the update. I was told I had gastritis as well and given two months’ worth of Pantoprazole. I didn’t see much difference after taking it. I still think I have acid issues, but it’s not too bothersome. I’m sorry they didn’t go deeper. I know they took multiple biopsies. The gastro was shocked when they found the cancer.

Please continue to post updates. I know it’s a pain to keep having to go get checked.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 12, 2019 07:36PM pesky904 wrote:

KBL, I think you said this before and I probably forgot but how far apart we are biopsies? How long after being diagnosed with gastritis were you diagnosed with cancer?

I have an appointment with the GI on Friday. I think he is going to give me a trial of a PPI\acid reducer. I guess I will go down that road and see if it helps.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 13, 2019 06:12AM KBL wrote:

I was actually diagnosed with cancer from the first biopsy. He said I had gastritis right after the procedure, but the biopsy took a few weeks. He had taken five samples, and they found the cancer in the angularis. The second biopsy was around three weeks later. He took 12 samples the second time, and it was found in two places, the angularis and the gastric body.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 13, 2019 06:29AM pesky904 wrote:

oh, I see. They only took 3 samples from me as far as I can see. 1 from the antrum (stomach) and 2 from the duodenum.

I guess with yours, they mayb saw something initially that led them to take more samples the first time around.

My initial report right after the biopsy said non-bleeding erosive gastropathy. But he only took one sample for biopsy so he must’ve felt pretty sure it was nothing more than gastritis.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 13, 2019 07:32PM KBL wrote:

I will try to remember to look where he took them from and report back tomorrow.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 14, 2019 12:26PM Kimm992 wrote:

Just chiming in to say that I had gastritis and seriously felt like I was dying. I was sure there was something horrifically wrong with me. Once I got on medication I felt MUCH better. Hoping the same for you!

Dx 10/14/2015, IDC, Right, 1cm, Grade 3, 0/3 nodes, ER-/PR-, HER2+ Chemotherapy 11/2/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Targeted Therapy 1/6/2016 Herceptin (trastuzumab) Chemotherapy 1/7/2016 Taxotere (docetaxel) Surgery 3/24/2016 Mastectomy: Right Radiation Therapy 4/30/2016 Lymph nodes, Chest wall
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Nov 14, 2019 07:41PM KBL wrote:

I didn’t have any pain at all. Maybe it was because it was “mild” gastritis.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 14, 2019 07:49PM pesky904 wrote:

I don’t have any pain either. Pathology report says mild gastritis.

I just feel constantly full, uncomfortably so. Nauseous a lot. But mostly it’s the feeling of fullness that’s driving me mad.

I keep thinking of Thanksgiving and how I won’t be able to eat a big meal. Because I constantly feel like I JUST ate a big Thanksgiving meal. :

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 14, 2019 07:49PM KBL wrote:

Pesky904 - here are the areas

Duodenum third part, Duodenal bulb, stomach body, stomach antrum, and stomach angularis. The second one also has gastric body, which is where they found the second spot.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 14, 2019 07:57PM pesky904 wrote:

My report right after the endoscopy said no gross lesions in the esophagus or the duodenal bulb or first or second portion of the duodenum. Said “non bleeding erosive gastropathy.”

then my pathology report says “A. Gastric antral biopsy: mild chronic gastritis; h. Pylori negative. B. Duodenal biopsy: no pathologic changes seen.”

They took one biopsy sample from the stomach antrum and two from the duodenum (not sure which parts. I think it was the bulb.)

I guess the difference is you were diagnosed with mild gastritis BEFORE any biopsy, right? And then as soon as they actually did a biopsy they found the cancer?

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 15, 2019 10:25AM pesky904 wrote:

Well, I saw the gastroenterologist this morning. He said the gastritis is very mild and he doesn’t think any further investigation (colonoscopy) is warranted. He offered to set me up with an appointment with a nutritionist to talk about diet for gastritis, and he said constipation could be a factor in the nausea,gave me samples of Trulance And Linzess and told me to come back in 3 months.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 15, 2019 12:18PM wallycat wrote:

I hope the gyn can rule everything out for you as well. You are rightfully frustrated, but still, it is nice that nothing is serious at this point.

I remember how utterly horrific I felt..I lost a lot of weight and the thought of food was impossible. I had a walnut sized dermoid on my right ovary that we knew nothing about. I had an annual exam and the practitioner felt it. The day that thing came out, my appetite and everything else went back to normal. It was beyond strange. My dermoid was b-9.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Nov 15, 2019 06:49PM KBL wrote:

Pesky904 - No, I wasn’t diagnosed with gastritis before. I had early satiety and a good amount of weight loss pretty quickly. I didn’t have any stomach pain. He found the gastritis when he did the endoscopy and biopsy, and he was extremely shocked when it came back as adenocarcinoma in the two spots. With deduction, it was found to be breast cancer. They’ve never found the original cancer, and I was diagnosed Stage IV de novo.I’ve also had anemia since last October. I still haven’t put back on any weight. I am able to eat a little more but still have nausea. I’ve just gotten used to it.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 15, 2019 07:01PM pesky904 wrote:

I haven’t lost weight… But all my weight is in my middle and I am going through accelerated menopause due to all the chemo. So I think hormones are playing a role also and why my weight has only dropped 4 pounds even though I barely eat for the last few months.


​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 16, 2019 07:45PM - edited Nov 16, 2019 07:45PM by KBL

I had a partial hysterectomy back in 2012, so I am post-menopausal. I haven't had chemo, so I have no knowledge about that. I sure hope they figure out what's happening.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Nov 16, 2019 07:49PM pesky904 wrote:

I am only 45 and was 42 when I was diagnosed. My menopause is an accelerated menopause induced by chemotherapy. I haven’t had a period since June 2017.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Nov 27, 2019 07:00PM pesky904 wrote:

ugh, I’m spotting again. This is so frustrating.

None of the meds the GI doc gave me worked. They all just gave me unbearable cramps. And now another bout of brown spotting.

The first bout of spotting happened after my primary care doc pushed pretty hard on my abdomen. Now this second bout is happening the morning after I had my first use of the flexitouch plus lymphedema pump which starts with compression in the abdomen and works down to the feet.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Dec 20, 2019 11:44AM pesky904 wrote:

Just an update in case anyone else is dealing with any of this.

Still no answers. Had blood work done on Monday. After 16 weeks of 50,000 iu vitamin D, my levels of D have dropped from 10 to 9, so still super low and even lower after megadosing.

Folate and iron also dropped, but B12 increased a very tiny bit. My white cell count is low and absolute lymphocytes down to 1.6 but I have no signs of infection. Seems like my body is just not absorbing nutrients.

I'm still so bloated and always feel full, can't eat much but also can't lose any weight. Extremely tired. Bruising like crazy. (I have a HUGE very black bruise where I had the blood taken on Monday and multiple bruises on my legs from just the light touch of the FlexiTouch.)

Had some more very mild spotting on Thanksgiving Day. Been referred to a new gyn for thickened endometrium (7.2 mm) and ovarian cyst, but won't see her until late January. Being referred to an endocrinologist, but that appointment hasn't been made yet.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 22, 2020 10:34AM pesky904 wrote:

Just updating for anyone with similar issues who might be following this.

Yesterday I had an endometrial biopsy. I had seen a gyn back in October after the first instance of postmenopausal bleeding and at that time it was found I had a thickened endometrium. The gyn wanted a biopsy done within 2 weeks, but I put it off back then.

That was a male gyn and I am more comfortable with a woman, so I asked to be switched to a female gyn and met her yesterday when she did the biopsy. She seems as though she had just reviewed my previous ultrasound and CT reports from October just before meeting with me and I don't know if she actually looked at the images.

As soon as she finished doing the biopsy (which was painful and I wish I had been told to take some pain meds beforehand, but oh well), she said the results would take 1-2 weeks but regardless of the results, she was scheduling a D&C hysteroscopy with polypectomy.

Not looking forward to that, as the biopsy itself was so painful for me.

I asked her why she was scheduling it, did she think something felt abnormal (this procedure was not done via ultrasound - she just inserted the tools and took some tissue samples, so she wasn't really looking closely at my uterus or endometrium). She didn't really answer. She just told me that if the results come back showing cancer, I'd be referred to another specialist. (Not very comforting, but some docs are just not careful with their words.)

She did say based on the ultrasound from October, my endometrium was too thick and has cystic spaces. She did not feel I had fibroids. She also is concerned that the 1.5 cm ovarian cyst that was seen on both CT and ultrasound was just casually mentioned and she wants to follow up on that with ultrasound in a few weeks. She said since I'm in menopause, her expectation is that by the time we follow up, it should have disappeared and if it hasn't, she may want to do further testing.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 22, 2020 10:51AM - edited Jan 22, 2020 01:02PM by wallycat

Pesky, thanks for updating us. When I had my hysteroscopy/polypectomy, I was knocked out (day surgery) so you feel nothing. My endometrium also looked thickened (11mm) and I emailed my gyn from WI who said that since I had been on tamoxifen, there was a 3% chance it was malignant. They ended up finding no real endometrial thickening but the ultrasound presented it as such because i had 3 polyps. All were b-9. I never had spotting but many gals do spot with fibroids and polyps.

I was in an ovarian cancer study in Seattle so had routine ultraounds and ca-125 tests for a few years (till they stopped the study) and they had a gal there that ovulated...she was 70. Her cyst resolved in 3 months. They say we never really stop ovulating just not as frequently or routinely. Aren't women lucky SickTired ?

I keep thinking of you and your situation and appreciate the updates. May this be the thing (the polypectomy) that helps with all other issues. Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jan 22, 2020 12:12PM pesky904 wrote:

Thanks, Wallycat. I really hope they are going to knock me out for the D&C/polypectomy!

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18
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Jan 22, 2020 06:46PM - edited Jan 22, 2020 06:46PM by kpmacmill

Pesky - how is your gastritis? Did the meds help at all?

Dx 4/15/2014, IDC, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 6/3/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 7/15/2014 AC Chemotherapy 9/16/2014 Taxol (paclitaxel) Radiation Therapy 12/28/2014 Hormonal Therapy 2/12/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 22, 2020 07:27PM pesky904 wrote:

The GI didn’t even give me any meds for gastritis. He said it was very mild and he prescribed Linzess because he said constipation could be causing the nausea. I tried the Linzess at a couple of different doses and they all caused absolutely excruciating cramps and didn’t really help with constipation.

So I’ve given up on the GI for now.

​dx 6/17 stage III TNBC 6cm tumor Taxol 7-8/17 tumor grew to 10cm AC 9-10/17 tumor shrunk to 3cm DMX 11/17 expanders placed Rads 33 doses + cisplatin 1/18 Cisplatin discontinued due to SEs Xeloda 4-10/2018 Exch surgery 11/18

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