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Maybe an ulcer?

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

I will just copy what I wrote to Loretta (I am tired an too lazy to start all over again)
Here is what we found out today about Don's pain:

Hi Loretta:
I am going to write this reply in word because it might be lengthy and lately I’ve had issues with writing something then having it go into the big black hole never to be found again.
Don has his scans at Oaklawn Hospital in Marshall, MI where we live. The reason for not getting the results right away on the scan taken on the 22nd was because our medical oncologist was on vacation. And, we were okay for a change on waiting for the results – I think we both dreaded the thought of hearing bad news.

Anyway, as you know, we had to leave and go to North Carolina to take care of mom and dad – it was just before then that Don started having these ‘stabbing’ pains occasionally in his belly area. We knew if it was cancer it would show up on the scan but we were thinking it could be scar tissue also.

Then last Sunday, the bottom fell out for Don and his was in a great deal of pain – he wouldn’t go to the emergency room, so we waited until Monday and I called the office of the medical oncologist and told them that I knew he was out, but someone needed to read the report to us because the pain Don was having was quite bad. Another doc read it and said there was nothing showing that would cause any pain and for us to call the surgeon at UofM. We did and he said it was too long after surgery to be anything going on from that and to call our primary care doc. We did and he got Don in Monday afternoon – he ordered an ultrasound of the gallbladder to be done Tuesday. Due to the July 4 holiday we did not get the results until yesterday – doc called first thing in the morning. Nothing showed up there either so he sent Don for another CT scan this morning.

We had the appointment with the med onc this afternoon and he called for the results of the second CT scan performed this morning. Again –nothing shows up. He is thinking this could be a gastric ulcer so he is sending Don for another endoscope. We do not want to go back to the gastroenterologist we had in November because we felt that him and his staff did not have any sense of urgency with this cancer. Our med onc is referring us to one he personally knows of in Kalamazoo – Don will of course need a new patient workup so the endoscope won’t be done right away.

He also has Don on prevacid and carafate (which Don had left over from chemo and radiation treatment, but really didn’t need to use). So this afternoon when we got home –he began taking that. The endoscope will show if it is an ulcer or ulcers or if there is a local recurrence going on. I asked him if it was cancer wouldn’t it show up on the CT scan and he said if it is big enough it would show. I am really hoping and praying that this is an ulcer and by taking the meds it will heal up.
The next CT scan will be in October, unless of course any issues pop up that require attention before then. Geez oh Pete – when someone wrote on the board to hang on because you are about to get on the rollercoaster ride from hell ~ they weren’t kidding.

Hoping things are going as good as can be for you and William – you sure have had a platter full of things to deal with. If you are in this awful heat wave we are having, I hope you have good working air conditioning. I recently saw a picture of a marine stationed in what could be Afghanistan, standing next to a thermometer that was reading upwards of 130 degrees F – and the caption read “Sorry you’re hot but at least you are carrying 70 lbs. of things while dressed in full gear and chances are good that you won’t worry about stepping on a bomb today.” That sure puts the weather in perspective for me. No matter the troubles we encounter, it seems there is always someone else struggling with even more.
So, we don’t have a definitive answer yet, but it looks as though we getting closer – CT scans clear, not the gallbladder – could be an ulcer – worse case would be a local recurrence but signs are indicative of an ulcer.

Of course, we’ll keep you posted and thank you for checking in on us.
Love, hugs and FEC,
Judy

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Judy,
Sorry to hear about Don's stomach problems. It shows how EC sucks when all of us are praying for an ulcer!!!!!! I know you will keep us all updated. It is a rollercoaster ride when any pain becomes a cause for concern and rightly so. So here's hoping it is a small ulcer and can be wiped out by the meds. My thoughts and prayers are with you guys, Ec is not for the faint of heart for sure. take care, hugs from Maryland,
Donna70

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Donna:

You got that right! When you are praying for an ulcer, there is something very wrong!

EC is definately not for sissies.

Love,
Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Sherri:

Yes Don is still having pain - it does seem as though the prevacid and carafate are helping some. He says when he is not taking the pain med it is constant. He has not experienced any nausea. He was ready for the med onc to put him in the hospital yesterday (should have drove him there myself).

We won't put up with too much more for much longer. I know that I've had enough - today he does seem to feel a bit better though or else he's putting on a good show for my sake. You know Sherri, the more I think about what you say, the more inclined I am to take him to the ER and get this resolved. It is 6:40 pm so we'll see how the night goes.

Thank you so much for your support!
Hugs and FEC,
Judy

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Hope Don's getting some relief from his pain using the Carafate.

Know you are in our prayers and positive thoughts.

Terry
PROUD wife to Nick, age 49

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

The carafate is a ridiculous med to give an EC patient. You need to take it on an empty stomach or hours after eating. As you know - ECers that have had surgery need to eat about every two hours - so what I would like to know is "When in the H??? do you take it?"

He is taking the prevacid and still needs to take the pain meds. We'll see how the night goes, but I am very much ready to do as Sherri suggested and just go to the ER and get 'er done.

You are in my heart, prayers and thoughts each and every day. Our love to the kids - hope you all are staying cool in this nice heatwave.

Hugs and FEC,
Judy

BMGky
Posts: 666
Joined: May 2010

Dealing with this roller coaster sure changes one's perspective. Who would think you would be wanting the diagnosis of having "only" an ulcer. No one would normally want this unless they have travelled the EC highway and want no more bumps or lumps in the road.

Hopefully the carafate and prevacid will help. Let us know if it does as my husband quite frequently has very paintful stomach discomfort. It is difficult to find something to help with the pain. His, of course, has not been as severe as Don's, but it is still hard to deal with. He has follow up appointments in August.

Wishing you both the best. BMGky

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Yup - you know you're on the FEC when you are praying for an ulcer or some other stupid thing huh?

The carafate is a difficult med for Don to take due the surgery and his need to eat every two hours. You are supposed to take it on an empty stomach or a few hours (3 to 4) after you eat. That pretty much doesn't work for Don who needs to eat something every two hours. I think he's doing a teeny tiny bit better today or else, my tolerance level got recharged and I'm handling it better today.

Don will be taking prevacid twice a day as med onc told him to do. Paul said he has occassional pain and Dave said he takes something every day to prevent issues - so hopefully your doc can guide your husband as to what to do. I hope it doesn't get as out of hand as Don's has been this past week - maybe you should call in before follow up appointments and see if there something you could give now to head off any issues?

Hugs and FEC,
Judy

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Judy,

Glad to hear the tests so far have not been indicative of a recurrence. I am sure Don is getting tired of sitting and waiting in various medical offices for "one more test". I can tell you, as a cancer survivor, periodic abdominal pain seems to go along with having your plumbing re-arranged. But mine has not been as severe as Don's and mine seems to subside in three days or so.

If it is an ulcer I would think the prevacid and carafate would give Don relatively rapid relief since the prevacid would reduce the acidity in the area and the carafate would coat the ulcer to reduce irritation.

I hope they schedule the endoscope quickly and the results are clear of any cancer related issues.

As someone else observed; you know you are on the EC roller-coaster when you find yourself saying "I hope it's an ulcer".

As always, daily prayer for you and Don.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Paul!

Yes, hopefully the endoscope will be scheduled soon and we'll know what is going on and you're right - we are on the EC roller-coaster praying for an ulcer! of all things!!!

Do you happen to know who is running this ride? We want off.

Love, hugs and FEC,
Judy

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Judy, My heart goes out to you and Don. I sure hope that the carafate and PPI that the doc prescribed do the trick for Don and that it's just an ulcer. It is a roller coaster ride alright. Think of everyone in all the heat and cant imagine how uncomfortable it is. I've been in the midwest (Wisconsin) in summer and know what the heat and humidity can feel like during a normal summer can't imagine the heat you're having now. hang in there and try to stay cool. Oh, I almost forgot. Didn't Dons surgeon or another Doc put him on a PPI after surgery? I know my surgeon did and my Doc at Fred Hutch agreed as there is still acid being produced and you don't want it doing any damage to the new stomasphaogus. The level of PPI that I was put on was much lower then before as acid production is much lower post surgery.

Dave

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Can't believe you were as close as WI and didn't stop in!!!! LOL

Don did get prevacid when he was going through treatment - I don't think he ever took it though. The carafate doesn't work real well with the eating schedule his new stomasphagous needs - he did take a little bit of it when he was nearing the end of radiation treatments, but again, the schedule to take the carafate is difficult at best to follow.

How are you doing with the hernia recovery? I know you have had to slow down a lot from your normal schedule, but hopefully you now have some time to smell the roses. When this pain first started with Don the first thing I said was "I hope you don't have a hernia like Dave did!" Your hernia certainly got my attention and I worried so much with him and that big new bike. Let us know how your progress is going and how the Mrs. is holding up.

Talk with you soon bro!

Hugs and FEC,
Judy & Don

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Hi. I couldn't help but laugh after reading some of the comments. My first thoughts also ,was how good that it might be an ulser causing the pain instead of cancer.
I guess we pray so hard for clean scans, we forget how serious an ulser can be. Praying it is something that can be easily cured, and he will get relief from pain soon.
Sandra

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Thank you Sandra for your good wishes.

I had to laugh also. Only cancer patients, survivors and caregivers can appreciate posts like these - if you don't laugh at some of the insanity, you could easily go crazy. I am keeping a close watch on him for any signs of a red alert and you can be sure that if I sense anything amiss, we will be headed to the ER.

Today just seems calmer - I like that.

Hugs,
Judy

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