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Old 04-06-2013, 11:31 AM   #1
SoCalGal
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Question PETscan NOT USABLE huh???!!!

Has anyone ever had a petscan that was deemed not usable? After waiting almost 7 months for a pet/ct, (to avoid so much exposure and because there was nothing to do about the results), with TDM1 approved my doc wanted to see what was going on inside me.

I've had at least 3 pets a year, for the past 7 years, so I am no stranger to the protocol - which I follow.

Meanwhile, my onc called with the report and said that my entire muscular area was "hot" including my heart, all my muscles and they were not able to read the report or use it at all. (I did not exercise the days before, or get a message, and my blood sugar was w/in normal range before the FDG shot).

I have been suffering extreme neck pain, and had one epidural (no sedation) 4 days before the petscan. The nurse also gave me a shot of toradol (anti-inflam.) about 10 minutes before I was scanned. During the hour before I was scanned, I was napping in the holding room. I am so speechless at this result - have never heard of a PET not working!

The only thing I can think of that would have used all my muscles - I had quite the sob fest the night before the scan - neck pain was terrible, feeling quite overwhelmed, and sometimes sad just overtakes.

But still, many people cry, many people - especially with cancer - have pain, so would that have made my muscles uptake all the sauce? Anyhow, just wondered if anyone here has ever had a similar experience?

Not sure now when to repeat the PETscan. Getting another epidural on Monday - hopefully this one will give me back my "life" so I can deal with my "Health"?!

I would appreciate any input...
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 04-06-2013, 11:53 AM   #2
Jackie07
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Re: PETscan NOT USABLE huh???!!!

Well, Flori, what can we say? You are just too 'hot'!

[Will do some digging and post it if I find anything ...]
[Are they sure toradol is not the culprit?]

Perhaps you have the 'hypersensitivity reaction' to the drug ...

http://en.wikipedia.org/wiki/Ketorolac
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Last edited by Jackie07; 04-06-2013 at 12:01 PM..
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Old 04-07-2013, 12:12 AM   #3
michka
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Re: PETscan NOT USABLE huh???!!!

Flori, I never heard of that but the Pet/Scan Dr must know so he should explain. It must be frustrating to go through the Pet procedure and wait for the results (and we know what stress it is) and have nothing. You need another Pet but you have to understand what happened before. I hope somebody on the forum can help. Hugs. Michka
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FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 04-07-2013, 08:46 AM   #4
'lizbeth
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Re: PETscan NOT USABLE huh???!!!

I have heard that the scan does not distinguish between cancer and inflammation.

What was this weird allergy with Herceptin that you had before?

Something is up, maybe a reaction to the solvents that the treatments are delivered in?

Breathe. Drink plenty of pure water. Check Dr. Google for natural anti inflammatories such as Tumeric. Do you like curried foods?

Plenty of fresh fruits, veggies and whole grains. Are you taking anything like Chlorella to help detox?


I see only the Perjeta seems new since the last PET. Or it might have been a reaction to the Toradol. Even if it is an anti-imflammatory if you have a sensitivity to something in it . . . and you seem to be very sensitive to processing things.
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Old 04-07-2013, 09:51 AM   #5
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Re: PETscan NOT USABLE huh???!!!

As I read your message, it sounds as though you had a " sadness scan". I have no useful ideas. Just that reaction
Keep the faith
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Old 04-07-2013, 12:06 PM   #6
StephN
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Re: PETscan NOT USABLE huh???!!!

Wow, Flori! I think you are beginning to qualify as the Murphy's Law of cancer patients. The longer we live the more "oddball" things can occur. Shoot ...

Wish I had an answer, but press on with your radiology team.

I know that when I have taken a book to read while I wait, it was been verboten. Can't even use the arms to hold a light book or magazine - it is the weight of the arms and hands that will engage the muscles they said. That is the reason the light gets turned down, so we are NOT tempted to read. Cell phone must be turned off as well. "Do NOT move" - and I am sure you did not, so there is someting else at work.
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Found suspicious lump 9/2000
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STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
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Old 04-07-2013, 04:43 PM   #7
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Wink Re: PETscan NOT USABLE huh???!!!

Wow !! Did they change the formula for the pet/ct injection? Do you have alot of inflammation in the area that lit up? Alot of inflammation can increase uptake of the contrast?
I think I would get the pain/inflammation under control and try the pet/ct scan again at some not too distant time.
Good luck figuring this out.
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Old 04-08-2013, 05:01 AM   #8
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Re: PETscan NOT USABLE huh???!!!

Flori,
That sucks! Geez!

And I'm so sorry to hear about the neck pain and injections. I've had to deal with neck and back pain...plus those stupid injections...on and off for years. And, really, unless you've lived that kind of pain, it can't be understood. Your tears are TOTALLY justified! So much to cope with all at once. My heart goes out to you!

Sending you strength and a gentle hug for healing...and a satisfactory answer on the whole PET SNAFU!
Try to relax...easier said than done, I know...but your neck needs all the destressing you can manage.
Denise
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6/18/13 Brain MRI - Avastin seems to be working!
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7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
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Old 04-09-2013, 04:02 AM   #9
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Re: PETscan NOT USABLE huh???!!!

I am no doctor, so this is just my thoughts from a laypersons point of view.

Doesn't a PET scan light up areas where the sugar uptake is more intense? Muscles take up more sugar when they are "working". So could the neckpain be causing all your muscles to cramp? Which would account for the increased uptake? A muscle relaxant could make a difference then.

Probably not, as nobody at the hospital thought of that, but thought I should mention it anyway. Who knows?

Hope the fact that only muscles lit up indicates that no other areas are active right now.

Hugs

Jacqueline
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Old 05-08-2013, 11:09 AM   #10
NEDenise
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Re: PETscan NOT USABLE huh???!!!

Hey Girl!
So what's the latest on the repeat PET scan? Has your neck pain resolved?
Inquiring minds wanna know!

Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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