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Old 05-01-2012, 06:00 PM   #1
Vicki revised
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Join Date: Mar 2012
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Horrible scan AEs with Tykerb?

I have never had bad ae's with PET scan diet or infusion...except for today! Horrible nausea, headache, and dizziness after scan today, which is the 1st one while taking Tykerb. Could that be the association?

Zofran and Advil didn't help and my BP was low so my hubby insisted on taking me to the dr for IV meds which stopped helping 10 min after I finished. I haven't felt this bad since I was on chemo so I wonder if it was caused by anxiety over scan, a virus, Tykerb or misbehaving liver.

Yes, I am obsessing about every physical symptom lately but I can't stop.
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Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 05-01-2012, 08:54 PM   #2
ElaineM
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Wink Re: Horrible scan AEs with Tykerb?

The pre Pet scan diet can cause problems in sensitive people.
The diet is meant to reduce the blood glucose levels in preparation for the pre scan contrast injection.
Very low blood glucose levels under 75 can cause problems. They can also cause dehydration. The pet scan contrast injection can also cause problems in sensitive people.
Some medical centers are very strick about the diet 24 hours before the scan----------absolutely no carbs, including no vegetables and no fruit. The only food some centers allow is protein and fat or nuts.
If you like beverages with caffeine if your medical center requires that you do not drink caffeinated beverages 24 hours before the scan the caffeine withdrawal symptoms may also be bothering you.
Certainly whatever medication you are taking could also have an impact, but I think most of the problems are related to the pre pet scan diet and requirements.
I hope you feel better soon. Eat, drink alot of liquids, and get some rest now that the scan is finished.
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Last edited by ElaineM; 05-01-2012 at 08:59 PM.. Reason: addition
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Old 05-02-2012, 04:53 AM   #3
Becky
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Re: Horrible scan AEs with Tykerb?

And Tykerb can cause tummy troubles all on its own so every little thing combined can cause a big synergistic effect.

Its over now so rest up!
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 9 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-06-2012, 11:24 PM   #4
Vicki revised
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Posts: 121
Re: Horrible scan AEs with Tykerb?

Decadron is a wonderful drug--one dose with fluids and I felt so much better. My radiology group is very strict about the diet. It starts 24 hrs before the scan, during which time all I can think about is carbs.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
Vicki revised is offline   Reply With Quote
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