Scanxiety long and drawn out this time. March/ April people?

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dianetavegia
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Scanxiety long and drawn out this time. March/ April people?

Postby dianetavegia » Tue Mar 14, 2017 8:29 am

I had pink urine after 2 and 3 hours of aerobics and cardio on 3 occasions so went to a urologist just to be safe. He feels it's benign but ordered an MRU (MRI of the bladder, etc. after an injection of Lasix) and since they were there, he suggested I have my MRI due in April on the same day. So, yesterday I had the MRU/ MRI. Those results will be online in 3 or 4 nights and my anxiety is starting to rise. Next week I'll have a cystoscopy of the bladder and have been told by so many how uncomfortable it is.

The next week is my CT of my Chest and my CEA and other blood work. Then another three or four day wait. If the hospital didn't post them online, I wouldn't get my results until I see the onc on April 11th!

Another 'fear' is that six months ago he mentioned stopping testing after this set of scans and just having me see my GP if I had 'symptoms'. I don't feel comfortable stopping this soon. It's been 8 years since my original Stage IIIB dx and this makes 5 years since the spread to my liver (1.4 cm and 80% of my liver removed with clear margins) making me Stage IVa (my onc upstages and so does BCBS). I've read loads of papers and most say that by 6 1/2 to 7 years post hepatic resection you can assume you're cured. I'd rather be 'bothered' a few times a year than stop early and it cost me my life.

Anyone else scanning this month? I keep telling myself that worry won't change anything and yet I know that the hospital posts results around midnight a few days after the scan and will wake to check my emails, have an upset stomach and horrible dread until it's all over.

I'm on anxiety medicine because for the first 2 years after my HR, I had terrible health anxiety. That's pretty much under control but the Chronic Disease Post Traumatic Stress Disorder can overtake me when we're at a party and a friend's husband seeks me out to discuss her last days because he knows I'm 'the only one who knows what she went through' or another local friend's husband emails to tell me they're not sharing it openly, but all treatment has failed and she's a very, very sick woman (rectal Stage IV).

This is the first time my testing and waiting for results will have been spread out over 3 weeks AND I had rescheduled on my own or it would have been LONGER.

UPDATE: The MRU/ MRI results are already posted. All clear! MRI shows a small cyst near where my liver regrew and that is unchanged since the first MRI done after HR! Not even noted in the 'findings'. Just mentioned down in the body of the report. MRI also showed the base of the lungs and they were clear.

Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

mdev
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby mdev » Tue Mar 14, 2017 11:27 am

Hi Diane,

That sounds really stressful, and I'm sorry you're having those symptoms. I've read what you've written here in the past, and on other forums, and you really maintain a remarkable attitude and take excellent care of yourself. It seems (to me, at least) that you're doing everything you can with regard to exercise, diet & maintenance to prevent a recurrence, and I imagine there's some comfort in that.

I hate when people told me not to worry, so I'm not going to say that :) It's totally normal under the circumstances. There are a few things I do when we're waiting for test results over here and while they perhaps make the people around me crazy (hahahaha), they work in my case. I try as hard as I can to distract myself, whether it's taking on a project like cleaning out a closet (crazy-making activity #1), having coffee with a friend, day-trips or just anything out of the ordinary that forces me to focus. I wonder if you have any hobbies on that front that you can take on with full gusto? Cooking for others and volunteering my time also get me out of that place, sometimes.

I'm glad to hear your CT was clear; here's to all other tests being negative!
2015-09-29 DH has sigmoid colon removed, CEA 1.2
2015-10-06 diagnosed pT3 N1a M0 stage IIIb
2015-10-22 8 rounds FOLFOX, 4 rounds 5FU, CEA post chemo 1.5
2016-06-16 CEA=1.9
2016-07-28 CEA=2.1, CT shows NED
2016-09-08 CEA=2.2
2016-10-27 CEA=2.0, CT shows NED
2016-02-02 CEA=1.6
2017-05 CEA=1.5, CT shows NED

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dianetavegia
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby dianetavegia » Tue Mar 14, 2017 12:58 pm

Thank you so much! Those results lifted a huge weight off me and I believe the CT of my chest will be fine.

I am doing everything possible to maintain good health. My cholesterol jumped 36 points this year! I immediately got 100% grape juice, cashews and am eating oatmeal every morning. That and hours at the gym... I'm about 10 or 11 pounds above my best weight. I'm short, but I have mountain climber legs. All muscle and big bones. Even when I was super skinny, my legs were strong.

I have to give God the glory for giving me these 8 years. I only hope, in HIS eyes, they have not been wasted.

Thanks again and hope your husband remains NED and CURED forever!
Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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LPL
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby LPL » Tue Mar 14, 2017 4:47 pm

Hi Diane,

Good to hear about the "All clear" MRI results! :)
Keeping my fingers crossed for a Good result when You have your blood tests & CT Scan.
Hubby is having his blood tests 2 days before his first CT (after chemo) at the end of March.
I think this is the 1st time he is a little nervous...
He has an appointment with the Onc around 45 min after the CT Scan so the 'after CT anxiety' period is short for him.

You wrote:
I'm on anxiety medicine because for the first 2 years after my HR, I had terrible health anxiety. That's pretty much under control but the Chronic Disease Post Traumatic Stress Disorder can overtake me when we're at a party and a friend's husband seeks me out to discuss her last days because he knows I'm 'the only one who knows what she went through' or another local friend's husband emails to tell me they're not sharing it openly, but all treatment has failed and she's a very, very sick woman (rectal Stage IV).


Your friends doing this to You - How are they thinking?? :evil:
It seems to me such a very cruel thing to do!!
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

DarknessEmbraced
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scanxiety long and drawn out this time. March/ April people?

Postby DarknessEmbraced » Tue Mar 14, 2017 5:19 pm

I'm glad your tests are clear and hope the cystoscopy is clear as well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

behconsult
Posts: 229
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby behconsult » Wed Mar 15, 2017 1:20 pm

Amen I tell you for clean imaging!!!!!!!!!! This stuff is traumatic and a roller coaster ride.
Stage 3B Age 52
T4; 2/16; spot on perit
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to three spots- Collapsed lung/chest tube 5/17. One more spot to go.

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LPL
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Re: Scanxiety long and drawn out this time. March/ April people

Postby LPL » Fri Mar 24, 2017 5:26 pm

Scanxiety Big time here! - Please Help :cry:

Today DH collected the result of his blood tests prescribed before the CT on Monday.

The Lab informed DH that his GP had called them (our GP get info of all test results ordered for DH), he wanted additional tests. DH got the prescription but it is 'written with a Doctor's pen' :shock: and we have Big problems reading... Maybe if I guess, it says "Calcium ionidized"? Yes I know the importance of that test.

Please Help ! I do not reqognize these as DH's blood !

Suddenly his creatinine is Very Good !! 7.9mg/L :shock: I've never seen that kind of #. Last time, Feb 14, it was 13.8.
Yes, at first I said Yes :) but then.. Why? would his kidneys suddenly get 'super healthy' when other things...?

What I feel is the BIG scare!! is the Albumin 27.9g/L !! (Ref 32.0-48.0) his previous test (Nov 16-16) was 39.8. Why this # now??
His Calcium now is 55.9mg/L !! (Ref 83.0-106.0) his previous test (Nov 16-16) was 85.6. Why?
(Calcium corrige 68.0mg/L or 1.70 mol/l (Ref 84.0-102.0 or 2.10-2.55 ) Why?
Bilirubin is Low.. 2.5mg/L (Ref 3.0-12.0) his previous test (Nov 16 -16) was 3.5. Why this # now??
His LDH (that I took a pen and added to the prescription - Please don't tell ;-) is 194 IU/L (Ref 208-378) his previous test (Aug 17 -16) was 414. First high then Low! Why?
His CRP (that I took a pen and added to the prescription - Please don't tell ;-) was 2.79 mg/L (yes!! :D ) Ref <5.00 he has had high!! 90% of the tests I have managed to get results from...

DH had 4 Folfox before his liver met surgery Sept 1st and after he has had 8 chemo Folfox, starting Nov4, 3 with 100% Oxilaplatin, 2 with 50%, and the last 3 without Oxi.
Right now I am so angry that he has not been monitored regarding Albumin and Calcium since November 16 !
Is there a protocol how often to monitor these things in blood?

I DO NOT LIKE :cry: :cry: what I read about Low Albumin - or Low Calcium.

DH is eating really well, lots of protein.
He is stronger then I have seen him for a long time!! Out walking >1hour each day in the forest with our dog.
Can these blood test result be a side effect of the surgery? Chemo?
Or? - He is also (since quite some time) on a drug called Innohep 14000 IU (Tinzaparine sodium) for a blood clut they saw close to his port - can that be a cause?

Has anyone else had these kinds of Bad blood test results before the 1st CT after liver surgery & chemo treatments?

Please give me something.. to hold on to - we are going for DH's CT on Monday - and I am scared :(

We are meeting DH's Onc 45min after the CT and I need help with questions to ask?

Sorry if I'm scared about 'nothing' - I'm SO alone with my worry&feelings.
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: Scanxiety long and drawn out this time. March/ April people

Postby Jacques » Sat Mar 25, 2017 1:00 pm

LPL wrote:Scanxiety Big time here! - Please Help :cry:

Today DH collected the result of his blood tests prescribed before the CT on Monday.

The Lab informed DH that his GP had called them (our GP get info of all test results ordered for DH), he wanted additional tests. DH got the prescription but it is 'written with a Doctor's pen' :shock: and we have Big problems reading... Maybe if I guess, it says "Calcium ionidized"? Yes I know the importance of that test.

Please Help ! I do not reqognize these as DH's blood !

Suddenly his creatinine is Very Good !! 7.9mg/L :shock: I've never seen that kind of #. Last time, Feb 14, it was 13.8.
Yes, at first I said Yes :) but then.. Why? would his kidneys suddenly get 'super healthy' when other things...?

What I feel is the BIG scare!! is the Albumin 27.9g/L !! (Ref 32.0-48.0) his previous test (Nov 16-16) was 39.8. Why this # now??
His Calcium now is 55.9mg/L !! (Ref 83.0-106.0) his previous test (Nov 16-16) was 85.6. Why?
(Calcium corrige 68.0mg/L or 1.70 mol/l (Ref 84.0-102.0 or 2.10-2.55 ) Why?
Bilirubin is Low.. 2.5mg/L (Ref 3.0-12.0) his previous test (Nov 16 -16) was 3.5. Why this # now??
His LDH (that I took a pen and added to the prescription - Please don't tell ;-) is 194 IU/L (Ref 208-378) his previous test (Aug 17 -16) was 414. First high then Low! Why?
His CRP (that I took a pen and added to the prescription - Please don't tell ;-) was 2.79 mg/L (yes!! :D ) Ref <5.00 he has had high!! 90% of the tests I have managed to get results from...

DH had 4 Folfox before his liver met surgery Sept 1st and after he has had 8 chemo Folfox, starting Nov4, 3 with 100% Oxilaplatin, 2 with 50%, and the last 3 without Oxi.
Right now I am so angry that he has not been monitored regarding Albumin and Calcium since November 16 !
Is there a protocol how often to monitor these things in blood?

I DO NOT LIKE :cry: :cry: what I read about Low Albumin - or Low Calcium.

DH is eating really well, lots of protein.
He is stronger then I have seen him for a long time!! Out walking >1hour each day in the forest with our dog.
Can these blood test result be a side effect of the surgery? Chemo?
Or? - He is also (since quite some time) on a drug called Innohep 14000 IU (Tinzaparine sodium) for a blood clut they saw close to his port - can that be a cause?

Has anyone else had these kinds of Bad blood test results before the 1st CT after liver surgery & chemo treatments?

Please give me something.. to hold on to - we are going for DH's CT on Monday - and I am scared :(

We are meeting DH's Onc 45min after the CT and I need help with questions to ask?

Sorry if I'm scared about 'nothing' - I'm SO alone with my worry&feelings.
Kind Regards /LPL

I'm sorry to hear about your DH's test results. I don't have any specific answer because my situation was not like your DH's. However, I did have a couple of occasions where the blood tests were bad and way out of line because the samples had not been handled correctly between the time of blood draw and the time of analysis in the main lab across town. If your DH's sample was drawn in the early morning and they didn't send the blood samples out to the lab until the end of the day,then this could account for the problem. This is what had happened once in my case. On another occasion I had bad results for an ESR (vitesse de sédimentation) test because the lab assistant had not followed the standard ESR-specific instructions for handling blood specimens. Maybe you could ask the oncologist whether a retest might be advised.

Here are some links to information on some of the the specific tests that you mentioned, but these are for women. Perhaps some of these links might provide a bit of insight.

Creatinine
http://sante-medecine.journaldesfemmes.com/faq/6899-creatinine-creatininemie-dosage-sanguin-et-urinaire

Bilirubin
http://sante-medecine.journaldesfemmes.com/faq/6537-bilirubine-elevee-ou-basse-definition-et-taux-sanguin

Calcium
http://sante-medecine.journaldesfemmes.com/faq/6539-calcemie-dosage-du-calcium-dans-le-sang

Albumin -
http://sante-medecine.journaldesfemmes.com/faq/6550-albumines-dans-le-sang-albuminemie

LDH
http://sante-medecine.journaldesfemmes.com/faq/63982-ldh-lactate-deshydrogenase-dosage-et-resultats

CRP
http://sante-medecine.journaldesfemmes.com/faq/14113-proteine-c-reactive-crp-analyse-de-sang


If you want other suggestions for questions to ask, you can have a look at some of these websites -- which are for all kinds of cancers and chemotherapy. You might find something of interest in one of the sites, but there is no guarantee.

.
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
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LPL
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby LPL » Sat Mar 25, 2017 7:13 pm

Thank You So Much Jacques !!!
I will look at the links.
You are correct regarding 'things can happen' at the Lab - My education is in Clinical chemistry and I worked in that kind of environment. The 1st thing to do when 'things look odd' is to take a retest.
After I posted I have found some info:

Leucovorin/5-Fluorouracil Induced Hypocalcemia
"Hypocalcemia as a side effect of this combination is usually overlooked despite the fact that this combination has been reported to cause hypocalcemia in 65% of patients [5]. "
(2016) http://www.casereports.in/articles/6/3/ ... cemia.html

Late Effects of Chemotherapy Video Transcript
"Based on our experience, electrolyte disturbances can be long-term side effects of oxaliplatinum. "
https://www.mdanderson.org/transcripts/ ... s-phan.htm
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: Scanxiety long and drawn out this time. March/ April people?

Postby Jacques » Sun Mar 26, 2017 4:12 am

LPL wrote:...You are correct regarding 'things can happen' at the Lab - My education is in Clinical chemistry and I worked in that kind of environment. The 1st thing to do when 'things look odd' is to take a retest...

Your DH is very lucky to have a clinical chemistry expert like you as an information gatherer. I think that you should probably be able to get to the bottom of this issue fairly soon.

I still think that there might have been a problem with the sample handling and that a re-test might be in order. I looked at several different websites that have the protocols and SOPs for handling these six types of blood samples, and there are some required operations that may not have been done properly in your case.

For example, some of these tests require a Heparin-coated, green-top tube to be used for collection, and the instructions for this type of tube say,
"...Tubes containing Heparin should be inverted 8 to 10 times after collection to ensure thorough mixing of the additive with the blood, and, therefore, complete anticoagulation of the sample..."

This is just one example where it might have been the case that the lab technician failed to shake the tube the required 8 to 10 times and the specimen was then spoiled.

There are other examples, too. For some of these tests, the specimen must ether be analyzed immediately or be put in the freezer within one hour of the blood draw. Maybe this requirement was not met. Maybe they waited until after their lunch break to actually analyze the specimen, thereby spoiling the specimen, etc., etc. This is just my personal opinion.
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
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LPL
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby LPL » Sun Mar 26, 2017 7:06 pm

Hi Jacques,

Sadly you can't read my links (it is Swedish, maybe Google translate?)
https://www.prv.se/sv/vara-tjanster/utb ... n-triomix/
It is about a colleague of mine who actually invented a cradle/swing (not sure about correct word). https://digitaltmuseum.se/021026360402/blodvagga
a small one, to be placed right where the blood is drawn so it could be mixed right away.
She also invented a special ESR test tube(!) that I hope is used in many places in the world(?) today.
By using her looong thin ESR test tubes we did no longer need to open and transfer the blood to another thin pipette for the ESR test.Transfering blood always comes with risks for Lab workers.

Yes there are for sure many sources of error that most people are unaware of...

Again Thank you So much for being so kind and for replying to my post.
I will report back after tomorrow's CT and Onc appointment.
Kind regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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LPL
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Location: Europe

Re: Scanxiety long and drawn out this time. March/ April people?

Postby LPL » Mon Mar 27, 2017 3:11 pm

Our scanxiety period is over.
We are SO HAPPY because DH's CT today showed NED :D :D :D
Or at least I believe that is what this means? Can you help Jacques?
"Conclusion: Pas d'argument pour une récidive loco-régionale ou a distance"
(My French is not good.. it is my 3rd language).
Or is it NERD? I would like to know what is correct to write before I change the signature, but I don't understand the difference between NED ★ No evidence of disease* - and - NERD ★ No evidence of recurrent or residual disease.
(From viewtopic.php?f=1&t=5366&start=45#p419139 )

Hubby's Onc's reaction to the blood test results was: "they are good", well apart from the low Calcium.
But she said: "no emergency", as in need of IV Calcium. (I wonder if she often see her patients having low Calcium after/from Folfox? - I forgot to ask, Sigh). DH's GP, who is monitoring the Calcium now, has prescribed Calcium/vitamin D supplements. We will ask the GP to check Creatinine and Albumin again - if he does not add those test to the Calcium check-ups himself.
Diane, wrote:
MRI shows a small cyst near where my liver regrew and that is unchanged since the first MRI done after HR! Not even noted in the 'findings'. Just mentioned down in the body of the report.

That was exactly the same, the same wording (but in French), for hubby in his CT today.
No CT result yet for you Diane?

I hope everyone who is having an upcoming Scan will get Good results!

Kind regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: Scanxiety long and drawn out this time. March/ April people?

Postby Jacques » Tue Mar 28, 2017 9:10 am

LPL wrote:Our scanxiety period is over. We are SO HAPPY because DH's CT today showed NED :D :D :D ...

LPL -
Thank you for coming back to tell us the results. This is wonderful ! Yes, I think you can probably use the term 'NED', but actually the expression that I prefer is, "NED for now" since this expresses the reality and precariousness of the situation.

I noticed in your original post on this thread that you had included some additional tests and some systemic inflammation markers in your list of blood tests. From what I have read here, I think that this is probably a good idea, since it is often the case that an increase in systemic inflammation serves as a very early warning sign that recurrences might follow at some later point in time.

You might want to look into some of the past posts here on expanded panels for blood testing, for example:

Initial Recommended Blood Tests
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53111&p=419695#p419599

Also, there are some articles and reviews available on the general topic of systemic inflammation:

Everything You Really Need To Know About Inflammation
http://www.wellandgood.com/good-advice/everything-you-need-to-know-about-inflammation/
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
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dianetavegia
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Re: Scanxiety long and drawn out this time. March/ April people?

Postby dianetavegia » Tue Mar 28, 2017 9:20 am

My CT scan was this morning, as was all my blood work. They did my MRU/ MRI in the hospital instead of the building next door which is the imaging center. The MRU showed from the top of my legs to my liver and the MRI did kidneys to base of lungs. They just didn't have openings for all to be done the same day this time.

I'll have my CT results in a few days, tho my onc won't see me until April 11th!
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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LPL
Posts: 413
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Scanxiety long and drawn out this time. March/ April people?

Postby LPL » Tue Mar 28, 2017 12:45 pm

Jacques, Thank You! for replying and for your suggestion.
"Ned for now" sounds real, correct - sounds good to me! Will use that in my signature. Having a problem to fit more words in there though so it may take some time... I've used up all words allowed and don't know what to erase? or change? Sigh.
Yes I have added some blood tests due to what I have read about for example chronic inflammation. Will for sure look at your links. Now I need to read, read, read what is good to do to help hubby keep the "NED for now" - and convince him of the importance to do/take 'this & that' :wink:

Diane, Keeping my fingers crossed for good results on your CT and blood tests.
Whishing you all the best.
Kind regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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