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Old 02-11-2010, 04:04 PM   #20
Becky
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: Walter Reed Vaccine trial

I was a Leukine side effect poster child. The drug does rapidly lower blood pressure after about one hour. I was extremely weak on the Leukine (got a shot everyday for 10 days in a row during every chemo cycle). I got hives at the injection site (they moved the site everytime) starting on the 7th injection and thereafter. This is supposed to be a GREAT thing as it is showing an immune response. However, I had to be extremely careful about coming in contact with anything I was allergic to. One time, we went out to dinner and I ate food I always eat but there must have been something that I am on the edge with and my lips swelled (gigantic) and I took lots of benadryl but it took 24 hrs to subside. I was a wreck then. The first days of every cycle I had tremendous bone pain. All side effects were worse in the beginning than they were ongoing. However, the lip swell thing was the cycle after my first Taxol (I did 4 AC then 4 taxol dense dose). So I think the allergic thing was in full gear as I had big problems with hives all over my body with Taxol so the Leukine didn't help me much there as this was intensified. Bad enough to have to get an epi-pen. But I persisted to stay on as I really believed in Leukine and I also felt the immune response assisted as I refused decadron as that also negatively affects the immune response. I depended solely on benadryl which is a drug that does not affect the hoped for action of Leukine (and the dendritic effect).

I was exhausted but felt like I was winning the war. Going to the cancer center all the time was no joy either.

I remember when I went back to start Herceptin and I asked what kind of side effects and was told "allergic reactions". All I did was laugh out loud. I'm sure they thought I was nuts but it was not anything like my reactions to Taxol when I was on Leukine!!

Keep on trucking.
__________________
Kind regards

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
Prolia every 6 months for osteopenia

NED 18 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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