Scanxiety and missing Bev!

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dianetavegia
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Scanxiety and missing Bev!

Postby dianetavegia » Mon Sep 17, 2018 9:35 am

Bev would give me a good talking to, today. I am going to miss her so much.

Okay, so it's been 9 years 9 months and 10 days since my Stage IIIB surgery and 6 years 5 months and six days since my liver resection with all clear since. My CEA / Blood work is Oct. 8th, CT/ MRI on the 16th and visit with the onc is Oct. 23rd. The blood work had to be rescheduled by 2 days and just having to hear from the office has thrown me into a tizzy. Oh, 48th Wedding Anniversary is Oct. 10th. :D

Studies have shown that people with a metrochronus (happening more than 2 years post original dx), single/ small met that is removed by hepatic resection, who remain disease free for six years have a zero chance of recurrence and at 6.48 years disease free, are considered cured.

(Oligometastases is a disease concept that is defined by a state of limited systemic metastatic tumors for which local ablative therapy could be curative. By definition, the purpose of local treatment for oligometastases is cure, and the primary outcome to be analyzed should be disease-free survival.)

Bev jumped all over me and would remind me of these facts, actually giving me the medical terms to back them. She could and would talk me off the ledge. Last Nov. my CEA was 5.8 and once we regulated my thyroid, it dropped over 50%.

I haven't had a scan in just under a year and the radiologist said one nodule in my lung for 9 years might be 1mm larger, but I went back all 9 years and looked at the readings for that nodule and they were all over the place but several times written as the same size he'd claimed might be larger. Actually, the head of radiology had replied several years ago that the four nodes in my lungs didn't need follow up any more since they met the criteria for benign.

Still............... the fear is rising. I'll freak out for a few days, calm down for a week or so and then when the blood work is done, I'll wake at a little after midnight knowing Labcorp will post it.

Thanks for 'listening'. I wish the fear would go away! Forever! Gosh, I'm almost 68 and know I won't live forever, but Bev, sweet Bev, was one year younger and so wise and highly educated.

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

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Scanxiety and missing Bev!

Postby hiker » Mon Sep 17, 2018 9:53 am

I only joined the forum a little over a month ago so didn't have the chance to "meet" Bev. But from what I've read here, everyone who knew her loved her.

The waiting between labs, scans and seeing the oncologist would definitely be a stressful time as I'm quite the control freak. It seems that many people have days, if not weeks, between having the scan and getting the results. Thankfully, MSK has been great about the timing of all this. I usually have my scans first thing in the morning, labs around noon, then see my oncologist where she goes over the results by 2 or 3pm. The folks at MSK have bent over backwards for me with scheduling, etc. since I live so far away and only want to be in NYC one day (actually, I'd prefer not being there at all).

You give me hope. I'm a little over a year out from my liver resection and have had clean scans since then. I pray we all can get to the 6.48 years you mention.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

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

Re: Scanxiety and missing Bev!

Postby DarknessEmbraced » Mon Sep 17, 2018 10:01 am

I hope that you get good scans and blood tests!*hugs* I'm always anxious over scans and waiting for results. Waiting is so hard!
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

stu
Posts: 875
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scanxiety and missing Bev!

Postby stu » Mon Sep 17, 2018 11:45 am

Your doing great and you are going to do great .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Beckster
Posts: 283
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Scanxiety and missing Bev!

Postby Beckster » Mon Sep 17, 2018 11:59 am

I read this post while waiting to leave for my 3 month onc appt. When I get lab work, I check to see when it is available online. If it is 2:00am, I will get up to check my bloodwork....especially my CEA numbers. Between the lab work and scans, I get majorly stressed! It doesn't matter how long or what stage...cancer is cancer! I am at my 2 year mark and still getting scans every 6 months. Going to ask when I switch to yearly scans and 6 month bloodwork.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

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peanut_8
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Location: Capital of Texas

Re: Scanxiety and missing Bev!

Postby peanut_8 » Mon Sep 17, 2018 1:43 pm

I miss Bev too. Never really got to know her all that well, butt she had a way of offering support at just the right time. I used to post quite a bit in the Grim Reaper thread. Frenchie seemed to appreciate my stupid jokes, and I liked making his day a little brighter. Once completely out of the blue, I received a message from Bev, thanking me for my efforts. Such a small gesture on her part, butt so encouraging to me.

Don't have a lot of advice for how to avoid worrying about your upcoming scans, Diane. On paper it sounds like you shouldn't have much to worry about. The length of time since your resection is definitely a really good sign. However, just saying something doesn't make it so. Once anxiety finds a perch in your brain it can wreak havoc.

Can you try and focus on the positive things in your life?

Would CBD oil be a possibility for you? I have suffered with sinus issues for many years, and a couple of months ago started waking up in the middle of the night with a feeling of panic. Didn't realize it at the time but allergies and sinuses were most likely responsible. My primary care physician recommended CBD oil, and it made a huge difference. I'd still wake up, butt was able to get back to sleep without the anxiety issue. Since then I've also had a balloon sinuplasty which basically solved the congestion problem, but I still use the CBD oil.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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bitchslapped
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Location: PNW/USA

Re: Scanxiety and missing Bev!

Postby bitchslapped » Mon Sep 17, 2018 3:32 pm

Diane, I don't usually post in the scan thread b/c I am not a patient. However as a spouse I can say you walk that walk right along side your spouse & it ain't a pretty view from there either. Scan time, questionable scans, bad scans, misread scans = sometimes very tense, gut-wrenching, defeated times @ my house.
However, I liked some of the suggestions in peanut's reply & thought I'd chime in this time.

I know you are a woman of faith located in the South & have sometimes wondered if you find comfort in Gospel Music. My DM & I used to watch The Bill Gaither Vocal Band Music Hour (Southern Gospel) on TV. B/c of stroke, dementia, aphasia...she w/n understand/follow along with all of the words to the songs (too fast), but she very well knew what it was all about & music reached her. During one of her times in Hospice, I requested a volunteer to come to the house & play guitar & sing. It was so enjoyable, relaxing.

I have been watching some of it lately on YouTube to get "the stank out" b/c if I had a BB gun right now I would probably be shooting tires out around the neighborhood @ night. It's been a l-o-n-g ass summer in the hood, let me tell you. :shock: :mrgreen: :lol:

So I'm going to stick my neck out here & post a link to a song that I thought might appeal to you sung by Stephen Hill (now deceased), an ordained minister, a beautiful tenor voice w/impeccable timing & delivery. He was a member of the Bill Gaither Gospel Hour Music Series...which still airs on TV BTW. If it doesn't help you, then maybe someone else down the line who is open to this kind of music. Seated right next to Stephen Hill you might recognize Larry Gatlin of the Gatlin Brothers fame years ago:

https://www.youtube.com/watch?v=RBoVaby29A4

If you really want to rock out w/something peppy by Stephen Hill go here:
https://www.youtube.com/watch?v=WxLA1NX9gxY

So I say think Positive, get some CBD oil, a box of doughnut holes, count your Blessings & kick back to some inspirational music that is good for the soul. :D

I think that's what Lucy & Ethel would do in modern times. Right Lucy (aka peanut) :?: :!: :D :lol: :P :mrgreen:

Best Wishes on your upcoming scans.

Ethel (BS)
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Scanxiety and missing Bev!

Postby peanut_8 » Mon Sep 17, 2018 4:12 pm

Seriously Ethyl, Krispy Kreme.

That's my final thought. :mrgreen: :roll: :mrgreen:

Lucy
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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HopeForJesse
Posts: 245
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Scanxiety and missing Bev!

Postby HopeForJesse » Mon Sep 17, 2018 7:58 pm

Will keep you in my prayers Diane <3
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
4/18 CEA 87 :( 5/18 5 days SBRT radiation to sternum CEA declining again 6/13/18 21.1 10/22/18 surgery to remove zyphoid process met
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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bitchslapped
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Location: PNW/USA

Re: Scanxiety and missing Bev!

Postby bitchslapped » Sat Oct 13, 2018 4:15 pm

Well...how did things turn out for you Diane? Were you able to relax some?

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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dianetavegia
Posts: 2707
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: Scanxiety and missing Bev!

Postby dianetavegia » Tue Oct 16, 2018 3:59 pm

Had my scans today. I'm never concerned during the scans and really only had anxiety waiting for my CEA. I'm on Medicare only, now, and they made my doctor change to Quest instead of Labcorp and no one told me. Doctor is HORRIBLE about communication but after 10 years, I'm not changing.

My CEA was Siemen's instead of Roche but my husband is a math teacher and he showed me the results as a ratio and my CEA was lower than it's EVER BEEN. Hypothyroid can cause elevated CEA and we're just getting my thyroid to stabilize in normal ranges.

So, I LOVE the Gaithers and have seen them in person many times. My husband sings many of their songs in our church. Sunday he sang 'Make it Real'. It's posted on my Facebook page. He's soooooo handsome and he's 71 with major lung disease from asbestos in the Army.

I asked for Prestonwood Choir during my MRI and heard 3 of my favorites!

Here's another two favorites:

https://www.facebook.com/HBC.Bowdon.Junction.Ga/videos/2135183069832976/

https://www.facebook.com/HBC.Bowdon.Junction.Ga/videos/392753141255267/

I'll let you know when the scans are in, but I'm expecting to hear CURED!!! Praising the LORD for all of you and all the blessings.

Off to teach the next to last class for Cancer Care Ministry at our church. I've been a lay minister in Cancer Care since Jan. 2016 and a few months ago went for training to train others. Tonight's lesson is on caring for the caregivers.
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

Punky44
Posts: 77
Joined: Mon Oct 01, 2018 4:29 pm

Re: Scanxiety and missing Bev!

Postby Punky44 » Tue Oct 16, 2018 4:11 pm

Wonderful news! So happy for you!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—1 down, 7 to go!

Detox
Posts: 31
Joined: Fri Apr 28, 2017 5:27 pm

Re: Scanxiety and missing Bev!

Postby Detox » Wed Oct 17, 2018 12:26 pm

It looks like you've officially beat this thing, sweet!

lpas
Posts: 1007
Joined: Wed Nov 19, 2014 11:11 pm

Re: Scanxiety and missing Bev!

Postby lpas » Wed Oct 17, 2018 8:44 pm

Your husband has a lovely voice, Diane. So happy for you that the blood work was clean! Enjoy!!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

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dianetavegia
Posts: 2707
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: Scanxiety and missing Bev!

Postby dianetavegia » Fri Oct 19, 2018 10:07 am

Still waiting on scan results from Tuesday. The onc doesn't work Wednesday and only goes in for a few hours on Friday so I may not get them until I see him next Tuesday. He has to click that he's seen them before the hospital will release them to My Chart.
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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