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Old 05-18-2008, 12:47 PM   #2
hutchibk
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Join Date: Oct 2005
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It sounds like you have 4 different concerns.

1. Concern: You are very sensitive to many meds.... did your onc, his nurse, or the infusion nurse do a history with you for your chart prior to prescribing you Decadron or starting your first infusion? Did you ever volunteer to your onc that you had a history of sensitivity to many meds, either prescription or over the counter. The onc and/or nurses typically should acquire this information before treatments begin.

2. Concern: You are worried about weight gain and 'flying high'. The Decadron is known to have a side effect of excitability. This can be uncomfortable but can be mitigated with adjustment of dosage. Decadron is also used to increase appetite. That is one of the primary reasons it is prescriped with chemo. It also assists the anti-nausea drugs work more efficiently. It is preferred that you maintain or gain weight on chemo rather than lose weight/nutrition due to nausea, vomiting and lack of appetite caused by cancer drugs. Some of the weight should disappear on its own within a few months of discontinuing the Decadron. I did not "take" decadron orally with my chemo. It was infused at the beginning of each of my treatments. Many women do not pay attention that they have Decadron infused with their anti-nausea drugs during each treatment. So they may think it is true when they state "that they do/did not take Decadron" (which is not really steroid per se, it is a glucocorticosteroid, used almost exclusively for cancer treatment), but I am assuming that many of them have received it with their infusion, whether or not they have made a point to take note of what is in each little infusion bag. I would have them ask their oncs whether or not they had Decadron and I bet a large percentage of them would learn that they did indeed have Decadron with their treatments, just not orally.

3. Concern: Benadryl causes you to crash hard. I have the same sensitivity to Benadryl. But I also had an allergic reaction to Herceptin which was not pleasant (many women do have at least a slight allergy to some of the properties in Herceptin). We learned that I cannot handle an infusion bag of Benadryl or a "push" of Benadryl through a syringe into my infustion line. It hits my blood stream too fast and knocks me out. I don't like it. So, my infusion nurses noted in my chart to give me one oral Benadryl pill at the outset of each infusion (which I can handle much better, but does cause drowsiness) and it assisted me in taking a nice little nap for the duration of my infusions, but was not debilitating to me like infusion or push.

4. Concern: You are ashamed of your weight gain due to treatment. I am sorry that you feel shame and I would suggest that you frame it in another way... you are fighting cancer and whatever is necessary to get a leg up on this beast is worth it. If it means that you gain weight due to your treatment, then so be it. You can work to lose the added weight after you have completed the very necessary treatment. ALL of us gain some weight on treatment. It is not only due to the Decadron, but also from becoming more sedentary while going through treatment and by being forced into menopause due to the chemo.

I promise at least a little of the weight will disappear after you finish treatment. Then you need to force yourself to get as active as you feel good enough to handle, and slowly and methodically drop as much of it as you can. I gained about 23 lbs with treatment, lost about 7 of it from finishing treatment and have lost another 7 through mild to moderate activity and exercise. I remain with a net gain of about 8-10 lbs since treatment, but I know I can do more to shed that if I put my mind to it.

Don't beat yourself up! Talk to your doc about your concerns, but please know that you are not being treated inconsistently at all. Everything you have described is within the very normal ranges of standard treatment protocol.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 05-18-2008 at 08:53 PM.. Reason: typo
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