Emend question

JDuke

I post on the anal board but have a question that I thought some of you here my have some input on. I am just cutting and pasting my post from the anal board. I am currently in the midst of pleural radiation for metastatic disease. I am hoping that some of you are familiar with the Emend medication and may have a suggestion as to how I may be able to get my hands on some. Thanks.

Post on the anal board from 03-05-11:
Has been a really rough week. Fifteen treatments down and 10 to go. The nausea has been relentless. Beginning to have some swelling and irritation of the esophogeus, not painful just annoying. I am getting an injection of Amifostine before treatment everyday. Yesterday my blood pressure was too low for the injection and I cannot believe what a difference it made with the nausea. I went out to dinner with my husband and son last night. Every other night this week, I was in the bed. So not doubt the shot is really ramping up the nausea, but my Dr. is adamant that the benefit of the shot far outweighs the nausea.

My physician wrote me a prescription for Emend for the nausea. His nurse claims it would be the perfect medicine for my "type" of nausea. I have been taking compazine and zofran and they are just not cutting it. The problem is I have no prescription coverage and the Emend is $150 per pill. It is a three tablet dose that lasts six days. I would need 4 packs to finish up and that would be $1400. HOLY cow!!! I got paperwork for the ACT program but was told by his nurse that the chances of getting any assistance is very slim as this medication is for "chemo-induced" nausea and not "radiation-induced". She said they consider my use "off-label" and therefore would not approve it. My best friend's work-out buddy is an RN that manages a chemo clinic in North FL and she is trying to get me some samples. My Dr.s nurse also said this was almost unheard of, she has never been succesful in getting her hands on any samples. So there you have it...I just wondered if any of you might have any suggestions or experience with this drug.

Thanks,
Joanne

abrub

Samples was what I'd suggest
I donated my 2 unused 3 pill packets to my onc's office for them to give to patients in need. (Technically not proper, because it was dispensed medication, but it is as individually wrapped pills.)

PhillieG

Tried it
Wasn't impressed. Marijuana works better and is tons cheaper and more enjoyable (I've heard)

geotina

Joanne:
Try the manufacturer's website. Many times there are programs to help pay for expensive medications when people can't afford them and do not have prescription coverage. My sister-in-law gets two of her prescriptions (not cancer related) this way, it was based on income.

Hope I have my facts straight but it was either this site or the Colon Club that someone wrote about Emend being available in IV form. If I am correct, maybe your onc could administer it as part of your chemo protocol.

Take care - Tina

CherylHutch

Drugs
Awww Joanne, that really and truly does suck! The fact there are medications out there that can help... and everyone reacts differently to treatments so the medications that help are individual. I was so sick with my first treatment of the chemo Irinotecan, a chemo that so many have said they found easier to take with little side affects... but seriously, I can totally relate to what you say you are experiencing with your nausea. This second treatment of Irinotecan, my onc has basically cut the dose in half but has me coming in every two weeks instead of every three weeks... and put me on Emend. I know the smaller dose of chemo has helped, but the Emend totally cleared up any sign of nausea... so it obviously works for me. Phil here on the board said it didn't work at all for him, but that a little bit of marijuana cleared up his nausea. When I was on the FOLFOX chemo, one or two puffs of the smoke did the trick for me too... but alas, didn't come near to touching this horrid nausea I had with the Irinotecan.

Soooo, it's a matter of trying different things and something that may not work for one of us, might just do the trick for you. Another one you might ask about... it's the steroid they give those of us on chemo called Dexamethasone. It is NOT a med that you want to take long term... it can have it's own side affects (can cause high blood pressure, can trigger diabetes, etc)... but I have found it to be a miracle med for the nausea as well as various physical pains.

Talk to your doctor/radiologist... anyone on your team and tell them the nausea is beyond acceptable. I am always shocked at how I think a lot of Americans are being ripped off with the cost of drugs. I am in Canada... so we won't even go into the differences in Healthcare Insurance, that's a whole other topic. But when it comes to drugs/prescriptions, those are NOT covered through our healthcare insurance unless we are in the hospital. Any meds given when you are in the hospital are covered, but if you are not hospitalized, and you get prescriptions from your GP or whoever, then you pay for them yourself. Yes, there are "Extended Healthcare" insurance programs that you can pay for (or an employer pays for as part of an employee benefit) and those really do help depending on how much they cover... but not everyone has them. So, you are saying that your 3-pack Emend is $150/pill. That is $450 for the 3-day pack. Now, up here we have the same 3-day pack of Emend, made by the exact same company/manufacturer... the only difference is our packaging has to be in both English and French.... and I have my receipt right here in front of me. Here is the breakdown of cost:

Emend Tri-Pack:

Cost: $102.68
Pharmacy Fee: $10.60
Total: $113.28
BC Pharmacare: $0.00 (provincial pharmacy program where once I reach my deductible, they will kick in and pay a
portion of any prescription meds, which will bring my patient portion down more)
Pacific Blue Cross: $78.60
Patient Pays: $34.68

So, ignore the BC Pharmacare and Pacific Blue Cross portions... look at the cost of the same 3-pack that we get 1/4 the cost it cost Americans. That is criminal that the pharmaceutical industry can get away with that! Right now, the Canadian dollar is pretty much on par with the American dollar, so those costs are pretty much dollar for dollar.

Have you tried looking into ordering your meds from an online Canadian Pharmacy? I know, that sounds weird, but it is very popular with a lot of Americans and for those who live closer to the border, they even have organized bus trips across the border for seniors to bring their legitimate prescriptions (must be prescriptions written by a legitimate doctor) to be filled at a Canadian pharmacy.

Here's one of the bigger ones that a lot of Americans use and it is based out of Manitoba:

CanadaDrugs.com

A couple years back, when the Bush administration was still in power, they tried their darndest to convince the American public that it was dangerous to order drugs online from third-world countries and that American citizens should only buy safe drugs from American companies who make these drugs. That was quite the joke back then because since when was Canada considered a third-world country creating dangerous drugs to be sold online?? I'd say a good 80% or more of the drug manufacturing companies in Canada ARE American companies that have set up shop in Canada because for years our dollar was quite a bit lower than the US dollar, hence it was cheaper for these companies to make their products but still charge the higher prices in the US. And yes, we have Canadian companies that make drugs that other companies don't make... and they are bought by the US and still sold at the higher prices. The Pharmaceutical industry is a powerful player and as we all know, billions of dollars are made through this industry.

I have not, personally, ordered any prescriptions online... it doesn't make sense for me to do that when there are at least a dozen pharmacies within walking distance from my home, and most of them even have delivery service (IE: my local Safeway pharmacy has free delivery service for any prescription that is filled at their store). I also notice, the cost online is a bit higher than what I pay in person... so I'm not sure if that is because of extra costs for having an online service, or because the shipping is free... but suffice it to say, you can look up the meds you have to buy and see what the savings would be to order them online from Canada. I checked the emend and for a 3-day pack, you'd be saving over $200 per pack.

Something to think about... and look into. Still not cheap, but cheaper than what they are trying to sell them for at your local pharmacy.

Cheryl

Unknown

CherylHutch said:

Drugs
Awww Joanne, that really and truly does suck! The fact there are medications out there that can help... and everyone reacts differently to treatments so the medications that help are individual. I was so sick with my first treatment of the chemo Irinotecan, a chemo that so many have said they found easier to take with little side affects... but seriously, I can totally relate to what you say you are experiencing with your nausea. This second treatment of Irinotecan, my onc has basically cut the dose in half but has me coming in every two weeks instead of every three weeks... and put me on Emend. I know the smaller dose of chemo has helped, but the Emend totally cleared up any sign of nausea... so it obviously works for me. Phil here on the board said it didn't work at all for him, but that a little bit of marijuana cleared up his nausea. When I was on the FOLFOX chemo, one or two puffs of the smoke did the trick for me too... but alas, didn't come near to touching this horrid nausea I had with the Irinotecan.

Soooo, it's a matter of trying different things and something that may not work for one of us, might just do the trick for you. Another one you might ask about... it's the steroid they give those of us on chemo called Dexamethasone. It is NOT a med that you want to take long term... it can have it's own side affects (can cause high blood pressure, can trigger diabetes, etc)... but I have found it to be a miracle med for the nausea as well as various physical pains.

Talk to your doctor/radiologist... anyone on your team and tell them the nausea is beyond acceptable. I am always shocked at how I think a lot of Americans are being ripped off with the cost of drugs. I am in Canada... so we won't even go into the differences in Healthcare Insurance, that's a whole other topic. But when it comes to drugs/prescriptions, those are NOT covered through our healthcare insurance unless we are in the hospital. Any meds given when you are in the hospital are covered, but if you are not hospitalized, and you get prescriptions from your GP or whoever, then you pay for them yourself. Yes, there are "Extended Healthcare" insurance programs that you can pay for (or an employer pays for as part of an employee benefit) and those really do help depending on how much they cover... but not everyone has them. So, you are saying that your 3-pack Emend is $150/pill. That is $450 for the 3-day pack. Now, up here we have the same 3-day pack of Emend, made by the exact same company/manufacturer... the only difference is our packaging has to be in both English and French.... and I have my receipt right here in front of me. Here is the breakdown of cost:

Emend Tri-Pack:

Cost: $102.68
Pharmacy Fee: $10.60
Total: $113.28
BC Pharmacare: $0.00 (provincial pharmacy program where once I reach my deductible, they will kick in and pay a
portion of any prescription meds, which will bring my patient portion down more)
Pacific Blue Cross: $78.60
Patient Pays: $34.68

So, ignore the BC Pharmacare and Pacific Blue Cross portions... look at the cost of the same 3-pack that we get 1/4 the cost it cost Americans. That is criminal that the pharmaceutical industry can get away with that! Right now, the Canadian dollar is pretty much on par with the American dollar, so those costs are pretty much dollar for dollar.

Have you tried looking into ordering your meds from an online Canadian Pharmacy? I know, that sounds weird, but it is very popular with a lot of Americans and for those who live closer to the border, they even have organized bus trips across the border for seniors to bring their legitimate prescriptions (must be prescriptions written by a legitimate doctor) to be filled at a Canadian pharmacy.

Here's one of the bigger ones that a lot of Americans use and it is based out of Manitoba:

CanadaDrugs.com

A couple years back, when the Bush administration was still in power, they tried their darndest to convince the American public that it was dangerous to order drugs online from third-world countries and that American citizens should only buy safe drugs from American companies who make these drugs. That was quite the joke back then because since when was Canada considered a third-world country creating dangerous drugs to be sold online?? I'd say a good 80% or more of the drug manufacturing companies in Canada ARE American companies that have set up shop in Canada because for years our dollar was quite a bit lower than the US dollar, hence it was cheaper for these companies to make their products but still charge the higher prices in the US. And yes, we have Canadian companies that make drugs that other companies don't make... and they are bought by the US and still sold at the higher prices. The Pharmaceutical industry is a powerful player and as we all know, billions of dollars are made through this industry.

I have not, personally, ordered any prescriptions online... it doesn't make sense for me to do that when there are at least a dozen pharmacies within walking distance from my home, and most of them even have delivery service (IE: my local Safeway pharmacy has free delivery service for any prescription that is filled at their store). I also notice, the cost online is a bit higher than what I pay in person... so I'm not sure if that is because of extra costs for having an online service, or because the shipping is free... but suffice it to say, you can look up the meds you have to buy and see what the savings would be to order them online from Canada. I checked the emend and for a 3-day pack, you'd be saving over $200 per pack.

Something to think about... and look into. Still not cheap, but cheaper than what they are trying to sell them for at your local pharmacy.

Cheryl

This comment has been removed by the Moderator

Buzzard

unknown said:

This comment has been removed by the Moderator

Just this morning talked to a man that lives in New York
and says that he takes a trip into Canada monthly through what they call "enhanced drivers license" ? that allows him to zip through without all of the extra checks and stuff that borders do..He gets his scripts filled then zips back across at a fraction of the cost in the US...He did say that it was illegal to do this, but the cost difference was worth it......

lisa42

IV form
Hi Joanne,

Sorry you don't have prescription coverage, but here's something that might help you out: Emend can now be given in IV form right before getting chemo, along with the other premeds. I used to take the pill version of Emend each time, but then about 2 months ago, the oncology nurse where I get my chemo told me that Emend now comes in an IV version & they would give it to me that way. An added bonus is that I think it works even better for me now than it did when I took it in pill form.
My thought here is that if your husband got it in his IV right before chemo, it would be covered under your medical insurance coverage and therefore it wouldn't even matter that you don't have prescription coverage. That's hopefully a way around it for you.
Definitely ask your husband's oncology office about this possibility before he goes in next time. If that doesn't work, then ask if there have been any Emend pill donations- sometimes people will donate back their unused pill packs when they finish up chemo. I am fortunate that my insurance covered it & when I got to stop chemo for a while a couple of years ago, I had a leftover Emend packet that I gave to the oncology nurses to give to someone who needed it, but couldn't pay for it.

Best wishes to you and your husband-
Lisa

ktlcs

lisa42 said:

IV form
Hi Joanne,

Sorry you don't have prescription coverage, but here's something that might help you out: Emend can now be given in IV form right before getting chemo, along with the other premeds. I used to take the pill version of Emend each time, but then about 2 months ago, the oncology nurse where I get my chemo told me that Emend now comes in an IV version & they would give it to me that way. An added bonus is that I think it works even better for me now than it did when I took it in pill form.
My thought here is that if your husband got it in his IV right before chemo, it would be covered under your medical insurance coverage and therefore it wouldn't even matter that you don't have prescription coverage. That's hopefully a way around it for you.
Definitely ask your husband's oncology office about this possibility before he goes in next time. If that doesn't work, then ask if there have been any Emend pill donations- sometimes people will donate back their unused pill packs when they finish up chemo. I am fortunate that my insurance covered it & when I got to stop chemo for a while a couple of years ago, I had a leftover Emend packet that I gave to the oncology nurses to give to someone who needed it, but couldn't pay for it.

Best wishes to you and your husband-
Lisa

Ativan
my husband's onco prescribed zofran and ativan said the combo would work really well, but he had very little nausea so it is hard to say

JDuke

lisa42 said:

IV form
Hi Joanne,

Sorry you don't have prescription coverage, but here's something that might help you out: Emend can now be given in IV form right before getting chemo, along with the other premeds. I used to take the pill version of Emend each time, but then about 2 months ago, the oncology nurse where I get my chemo told me that Emend now comes in an IV version & they would give it to me that way. An added bonus is that I think it works even better for me now than it did when I took it in pill form.
My thought here is that if your husband got it in his IV right before chemo, it would be covered under your medical insurance coverage and therefore it wouldn't even matter that you don't have prescription coverage. That's hopefully a way around it for you.
Definitely ask your husband's oncology office about this possibility before he goes in next time. If that doesn't work, then ask if there have been any Emend pill donations- sometimes people will donate back their unused pill packs when they finish up chemo. I am fortunate that my insurance covered it & when I got to stop chemo for a while a couple of years ago, I had a leftover Emend packet that I gave to the oncology nurses to give to someone who needed it, but couldn't pay for it.

Best wishes to you and your husband-
Lisa

Emend
Hi Lisa,
I am the patient. Sorry if my post was confusing. I am not having chemo at this time, just radiation. Hopeful that this radiation does the trick and I don't ever have to have chemo again. Because radiation nausea is an "off-label" use for Emend, they would not cover it even if I had prescription coverage.
That was kind of you to donate your leftover meds, I know whoever benefited from them was truly grateful.
I do read all of your posts and I would like to wish you continued enthusiasm and benefits from your naturopath interests. I too plan to pursue this avenue when I am finished with my radiation.
Best to you,
Joanne

JDuke

ktlcs said:

Ativan
my husband's onco prescribed zofran and ativan said the combo would work really well, but he had very little nausea so it is hard to say

Emend
They did call in a prescription for Zanax hoping that combined with the zofran it may be more effective than the zofran/compazine combo that they have me using now. Thank you for your reply.

JDuke

PhillieG said:

Tried it
Wasn't impressed. Marijuana works better and is tons cheaper and more enjoyable (I've heard)

MJ
You are not the first to suggest this Phil, I may have to give it a try. If I were in California I would definitely try the truffles that WinterMarie spoke of

CherylHutch

unknown said:

This comment has been removed by the Moderator

FDA Fixed....
Ok... I wasn't sure if this had happened or not, Graci ... I know there was a big who-ha ordeal a few years back when Bush tried to convince Americans not to shop across the border because you couldn't trust drugs from third world countries and we all had a good laugh up here because it was like he was accusing Canada of being a third-world country, when the majority of drug companies here that manufacture, are in fact American companies who moved their manufacturing plants up here because of the exchange on the dollar (it was cheaper for them to produce in Canada). BUT, that doesn't mean the US government wants Americans to buy out of country... hence I can see where they have fixed it to make it more difficult.

I only looked up Emend, since that is the one that Joanne mentioned and mentioned the price she has to pay for it. It works out that, yes, it's still expensive but if she were to order online with a prescript from her doctor, it would be (generic brand) $65.23/pill vs $150.00/pill. That's a pretty substantial savings.

Ineresting about your doctor not being able to write scripts otherwise he'd be fined. As far as I know, a script is a script... it has the doctor's name and his pharmaceutical number that proves he's qualified doctor who is able to write scripts. Where the patient gets the scripts filled, how would he know? But, it just goes to show how much power the pharmaceutical industry in the US has... to be able to control what/who/how doctors write scripts? Interesting.

Buzz... the "enhanced driver's license" program is the part of the Nexus fast lane program. Picking up the prescripts is not illegal... but crossing the border without declaring them as a purchase is illegal. Right now, if you drive across the border and don't have a Nexus card or the "enhanced driver's license", then you wait in line to get to the border/customs agent and let them know if you have any purchases to declare. Depending on the amount of money you spent in Canada, will determine whether you have to pay tax on those purchases. If you have a Nexus card or an enhanced driver's license, then you have gone through an interview, they have checked over your valid passport, and basically done all the checks you would need to do when you cross the border... and you are on the honour system to declare what you are bringing home. This is an extra lane that you can go through and avoid the lineups at the border. Of course, they do spot checks... and you may be asked to stop when going through the Nexus lane... and if they find you have goods that you haven't declared, then you are in big, big doo-doo! Not only will you lose your enhanced driver's license and it will be up to you to go apply for a regular one, you stand to have your passport confiscated and of course you will never be able to participate in the enhanced driver's license/Nexus program again... plus you will get fined and possibly even charged. I don't know how much your friend is saving in prescription costs but I would be very leary of losing all those privileges, especially losing one's passport, rather than declaring one's purchases.

Cheryl

tootsie1

Sorry
I don't have any great ideas for you, but I just want to wish you well. Hopefully something that others have suggested will work out for you.

*hugs*
Gail

CherylHutch

unknown said:

This comment has been removed by the Moderator

Graci
Duh! I think I misread something you said... when you said "I just checked your link and it is much like what I receive now through e-mail", I realized that you mean the junk/spam mail you get! Oops! No, I would never ever recommend that anyone follow up with any links that come through email unsolicited. Most of those ARE spams and are just out to take your money... never ever EVER fall for unsolicited emails, no matter what they are offering or how good the deal may seem.

The link I gave was an actual legit link... yes, there are actual online legit businesses. But those emails one gets advertising "cheap" drugs from Viagra to ... well Viagra... and then others on the side.... toss those emails. Don't even be tempted by them... although, unfortunately so many do fall for them and IF they get anything in return for their money, chances are it is all placebos and dangerous to even attempt that route.

Research, research, research... having said that I have not ordered online because I have Canadian pharmacies in my neighbourhood, I would say that if you are going to do the online ordering, common sense would dictate that you check out the company prior to entering any credit card information or personal information.

Haha... I fell asleep early tonight (having been out all afternoon, I was tired by 7pm)... but woke up at 11:30pm and this thought just hit me.... that the emails you were talking about were unsolicited spam emails!

Cheryl

Unknown

tootsie1 said:

Sorry
I don't have any great ideas for you, but I just want to wish you well. Hopefully something that others have suggested will work out for you.

*hugs*
Gail

This comment has been removed by the Moderator

Unknown

unknown said:

This comment has been removed by the Moderator

This comment has been removed by the Moderator

Buzzard

unknown said:

This comment has been removed by the Moderator

You were right Cheryl......
He said it wasn't illegal to get them just illegal to bring them back and not declare them ..Thank for the clarification...........buzz

Jewells

Doesn't your doctor's office
Doesn't your doctor's office carry samples? When I was doing chemo, I was extremely sick. Emend helped. I couldn't afford the cost of the prescription, so my doctor's office gave me samples and a card to fill out to get them directly from the company. There has got to be something that the hospital your doctor is associated with can do to help you.