6 weeks off Vit H and markers JUMP

[SoCalGal]

Just about (6) weeks off herceptin and my markers JUMPED. CEA doubled. I am going to see an allergist to see what I can take or do to get back on Herceptin. I've had a BAD reaction to decadron (and prednisone) in the past. More than the cleaning the house for 3 days - more like extreme anxiety so that I cannot think or function and can only feel hysterical - ativan could not touch the way I was feeling from that.

BUT Right now my choices are very slim - am back on Tykerb only and will know in 2 more weeks if it is doing any good for me. Regular Chemo doesn't work for me, I don't qualify for the Heat Shock Protein trial - they need soft tissue mets and something they can biopsy. So my best bet is to find a way back to vitamin H. And to try to keep my game face on. Am I overlooking any options?
Flori

[Chelee]

Flori,
Is there any possibility that the pharmacy is mixing up your Herceptin differently then before? One other thought is if you've started any new meds that are causing this reaction?

I see you switched from Zometa to Xgeva. The 1st time you had this allergic reaction was it around the same time you switched to Xgeva? Could that be reacting with your Herceptin? (Just throwing some thoughts out there.) Maybe more pre-meds before taking your Herceptin might help? I sure hope they get this figured out for you...I can imagine how you must be feeling without it.

Chelee

[chrisy]

Hmmm.

I keep hearing about trials of an "oral herceptin" but have not been able to really find out about it. Maybe inquire about that.

On the herceptin front, would it be feasible to change dosing - maybe a weekly vs. 3 week portion? Or maybe infuse simultaneously with a lot of saline (I seem to remember doing that back in the chemo days when I first started). Also, if you're looking at other her2 options, might you qualify for any other trials? I know it's like threading a needle in terms of qualifying for trials - a good thing like not having any mets to biopsy can be a bad thing for trials.

Hang in there flori.

[KDR]

Hi,
I've done some research on the heat shock protein therapy and have found it is quite toxic. I opted not to enter that trial. The side effects were scary.
I would not consider your ineligibility a loss. What does "boo" mean in your signature?
Karen

[Lani]

Flori, have you asked them to not mix in the benzyl alcohol before they mix it up and give you the herceptin

some have been asking for this all along as they felt the benzyl alcohol caused more joint complaints

it would be a shame to stop herceptin if it was the preservative that is bothering you--throwing out the baby with the bathwater!

[SoCalGal]

Thanks, Lani - I will double check that issue. Karen, thanks for letting me know about the HSP. I hate not having a plan...am so bad at inactivity. Feel better today that I've scheduled the allergy doc and also my brain mri. Action = survivial in the book of flori. "Boo" means it did not work for me. Since all functions are normal, I wonder if I can revisit Avastin, which worked well except for the protein in the urine which resolved. Chris- I love your new avatar - sweet!! Thanks ladies, guess time will tell.

[SoCalGal]

PS - I just emailed my NP to ask for the exact ingredients with herceptin - it seems like a good thing to bring to the allergist who will not be super well versed in Hercepting I'm guessing.

[Trish]

Flori, did you end up having the TDM-1 last year? I couldn't work out from your signature. Hope things go well,
Trish

[Lani]

here is the "recipe" by which they prepare the herceptin infusion:

Drug: Trastuzumab - Herceptin®
Usual Diluents
NS
Dilution Data
DILUTION SUMMARY
[Amount of drug] [Infusion volume] [Infusion rate]

[Prescribed dose ] [250 ml NS] [ 90 minutes]*

*Initial doses (loading), are infused over 90 minutes. Subsequent doses are infused over 30 to 60 minutes if tolerated. See Dosage and administration for additional info. DO NOT SHAKE.


Preparation for Administration
------------------------------------------------------
Reconstitution: Reconstitute each 440 mg vial of Herceptin with 20 mL of Bacteriostatic Water for Injection (BWFI), USP, containing 1.1% benzyl alcohol as a preservative to yield a multi‑dose solution containing 21 mg/mL trastuzumab. In patients with known hypersensitivity to benzyl alcohol, reconstitute with 20 mL of Sterile Water for Injection (SWFI) without preservative to yield a single use solution.

Use appropriate aseptic technique when performing the following reconstitution steps:
Using a sterile syringe, slowly inject the 20 mL of diluent into the vial containing the lyophilized cake of Herceptin. The stream of diluent should be directed into the lyophilized cake.
Swirl the vial gently to aid reconstitution. DO NOT SHAKE.
Slight foaming of the product may be present upon reconstitution. Allow the vial to stand undisturbed for approximately 5 minutes.
Parenteral drug products should be inspected visually for particulate matter and discoloration prior to administration, whenever solution and container permit. Inspect visually for particulates and discoloration. The solution should be free of visible particulates, clear to slightly opalescent and colorless to pale yellow.
Store reconstituted Herceptin at 2—8° C; discard unused Herceptin after 28 days. If Herceptin is reconstituted with SWFI without preservative, use immediately and discard any unused portion.
Dilution
Determine the dose (mg) of Herceptin - see Dosage and Administration. Calculate the volume of the 21 mg/mL reconstituted Herceptin solution needed, withdraw this amount from the vial and add it to an infusion bag containing 250 mL of 0.9% Sodium Chloride Injection, USP.
DO NOT USE DEXTROSE (5%) SOLUTION.
Gently invert the bag to mix the solution

ADMINISTRATION: Initial doses (loading), are infused over 90 minutes. Subsequent doses are infused over 30 to 60 minutes if tolerated. See Dosage and administration for additional info.

Stability and Storage: Vials of Herceptin are stable at 2–8°C (36–46°F) prior to reconstitution. Do not use beyond the expiration date stamped on the vial. A vial of Herceptin reconstituted with BWFI, as supplied, is stable for 28 days after reconstitution when stored refrigerated at 2–8°C (36–46°F). Discard any remaining multi‑dose reconstituted solution after 28 days. A vial of Herceptin reconstituted with unpreserved SWFI (not supplied) should be used immediately and any unused portion discarded. Do Not Freeze Herceptin following reconstitution or dilution. The solution of Herceptin for infusion diluted in polyvinylchloride or polyethylene bags containing 0.9% Sodium Chloride Injection, USP, should be stored at 2–8°C (36–46°F) for no more than 24 hours prior to use.
^^^^^^^^
I do not know your body weight,ie, how many vials/parts of vials you get, but the important thing is, once they do not use the benzyl alcohol preservative, they cannot keep the rest of the herceptiin around to give the remainder of the vial to someone else.

[Midwest Alice]

Lani thanks for the information on the mixture.

Flori I hope it is a simple switch of the ingredients that work for you! Hugs~Alice