Dear CVS and UPS,
It is 110 today in Phoenix - no styrofoam cooler and ice pack survives two day ground delivery in this weather.
Dear ladies,
Does Capcetibine/Xeloda need to be kept cool? How much of a fuss should I make?
I made fuss about Ibrance that’s why I now am the owner of 10 tiny styrofoam coolers and reusable ice packs.
😡
NBC Nightly News with Lester Holt did a segment on this very subject last December. Possibly they have a written copy. It shows the danger of mail order drugs.
Also, Unite for Safe Medications is a non profit out of Missouri that is active in this fight. I met the founder when I spoke to the Florida Board of Pharmacy about the dangers of mail order shipping. You should ask to speak at the Arizona Board of Pharmacy. It's a real eye opener. Most of the board members are with big pharma. The wolf is guarding the hen house.
UPS and USPS trucks get very hot because most don't have air conditioning. Ask your computer how hot the inside of a UPS truck can get in one hour when the outside temperature is 95 degrees.
The problem with mail order is the fact that we don't know how high or low drugs can go. The bottle says 68 degrees to 77 degrees with excursions 59 degrees to 86 degrees. I had a number of conversations with the FDA about this before covid-19 and have not really had the energy to continue to fight them. Was able to eventually reach the executive level. They control the drug from the manufacturer to the first warehouse and from that point it is under state regulations. Most states don't enforce their own regulations, but a few do. It would be easier to fix this at the FDA level rather than dealing with states. Anyone have some political clout?
My last Ibrance prescription came UPS next day air with early morning delivery. It took a lot of fight to get to this point. If anyone should decide to fight them record everything and tell them that you are. Don't argue with them ask them to go on a three way conversation with the FDA or the manufacturer. Both will defend the pharmacy. Then you say Let me remind you that I am recording this conversation - Are you telling me that it is ok for Ibrance to be in a UPS truck all day with temperatures in the 90's. That would make the inside of the truck well over 100 degrees. There is an unpublished study about Ibrance that the pharmacy and Pfizer will tell you about. I have a letter from Pfizer that says they don't approve this study. Also, have a copy
of study summary.
Sorry for getting long winded, but this is a subject very close to my heart. We need world wide regulations for shipping drugs. Best of luck to all of you. Blessings, Hannah
HannahJust wanted to thank you for this information and for doing such good work in an against the odds situation. We all continue on.. and your work is an example.
Amen thank you wow!
I live in the Philippines where our average temp is 30 to 35 degrees Celsius. I don’t refrigerate my Xeloda and when I get it from the pharmacy, it is not cold either just room temp. It hasn’t affected the efficacy of the drug.
Thanks! It was just ridiculous that they even out it in a cooler - the ice pack was almost too hot to touch by the time it got here.
You don't need to refrigerate. It needs to be at room temperature. They put it in coolers with ice packs to keep them at room temperature during shipping in hot weather. The medicine package should be protected from the ice packs. Too cold is not good either. We need the highs and lows each individual drug can safely travel. Blessings, Hannah
My old Ibrance capsules used to come in a styrofoam cooler and delivered FedEx next day A.M.The new Ibrance comes in tablet form and are individually packed in a 7-day blister package, so you get three 1-week packages per box. It is no longer delivered in styrofoam cooler. I still request overnight delivery because of the heat.
They have been doing next day in a cooler but this time I couldn’t order online and I couldn’t get the phone bank guy to overnight it. I can’t believe they thought a cooler would work for two days in Arizona in a UPS truck. I’m sure it’s fine and I’m not up to making a fuss today but when I reorder they are going to hear about it for sure
Yours is the best way. Who ships it to you? In the winter mine is best shipped UPS ground. Otherwise it sits on the ground in Pennsylvania in freezing and below freezing temperatures. The best shipping methods are going to vary based on where you live and where the drug has to travel to reach you. Sometimes there just isn't a best way. Blessings, Hannah
Thank you
Yes it makes no sense since the cancer center has a pharmacy but it is all tied to insurance and the deals they have with “specialty” pharmacies like CVS. It’s beyond aggravating
Jeez thanks for alerting me to this. I arrived on April 1st in usa with 6 months supply of Ibrance from nz( plus Xgeva snd my faslodex shots… so I haven’t had to get any picked up from a pharmacy or sent to me yet. Thank you NZ! But now I am all insured and will have to figure out this specialty pharmacy way to get things.
I was told by pharmacy in USA that they can only provide one monthly dose of Ibrance at a time, allegedly because the doctor may change dosage due to monthly blood results. I had asked for a 2 month supply due to travel plans, and that’s what I was told.
I was very lucky to be given 6 months supply without even a co pay because in NZ drugs are free. My oncologist knew that I would be travelling for several months across the country before arriving back to Boston… wasn’t sure how long it would take to get sorted out with appts etc.
Got my meds for next cycle via overnight courier and they were cool. I had to raise a giant fuss but I got them correctly delivered. They tried to tell me that Fed Ex was unavailable in my area….downtown Phoenix? Huh? I’m starting to think I am going on a mission about these ridiculous run arounds
I just had to laugh as a Fed Ex truck just rolled by our house
Tumor markers trending up
Just had check up
Not going to give up. 
Weight up index down.
Tumor markers went up
