View Full Version : Little help?
Most of you know that I don't normally do things like this, and especially tend to keep my personal situation close to the vest, but this something I'm making an exception for.
My fiance, Tina, was diagnosed with triple-negative breast cancer (http://en.wikipedia.org/wiki/Triple-negative_breast_cancer) 3 years ago. After chemo and surgery the cancer appeared in her brain a year later. After more drugs, more radiation, a year after that it was back. Since then she has been on a drug called Avastin (http://en.wikipedia.org/wiki/Avastin). 3 months after she started this treatment the tumors were reduced in size by 30%, and since then she has remained on the treatment and they have remained stable. There is absolutely no doubt that this drug is keeping her alive.
Recently an lFDA Advisory Committee (http://online.wsj.com/article/SB10001424052748703724104575379392504495872.htm) has recommended that the drug's approval for treatment of breast cancer that has metastasized to the brain be revoked. They claim that "risk-benefit ratio of [Avastin] when added to the standard chemotherapeutic regimens...may not be considered favorable." I would like for these bureaucratic pencil-pushers to meet Tina, and she is just one of hundreds who has reported improvement with minimal side-effects. I am of the opinion that if the drug saves even one life with minimal side effects then it should be approved. The decision should not be left to Washington suits but should be a decision between the patient and their doctor to weigh side effects vs. benefits.
If you agree, there is an online petition where you can go and very quickly let your voice be heard. If you are of a mind, you can call your representatives or email them and let them know that you are opposed to the FDA revoking Avastin's approval.
link to online petition (http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/)
This is not a sympathy plea, or a request for a pity-party. That's not my thing. Every day that Tina is able to stay on this drug is a good thing, and if you could take just a few minutes and add your name to the petition, she, I, and her 13 year old son Matthew as well as the rest of her family and friends would really appreciate it.
Thanks.
Signed.
My GF lost multiple members of her family due to cancer. Mostly to Mesothelioma as many of them worked for the same asbestos using insulation manufacturer.
It is a terrible diseas and anything that can be done to combat it should be done.
I hope this helps! Keep fighting!
Signed
Good luck and prayers for both of you.
signed
do you mind if this is cross posted elsewhere ?
Done. Rob God bless your fiance and I sincerely hope this petition helps.
-Jax
done. Best of luck to you and yours.
parishioner
09-09-10, 17:01
Signed. That was easy.
Thomas M-4
09-09-10, 17:09
Signed
SW-Shooter
09-09-10, 17:16
Most of you know that I don't normally do things like this, and especially tend to keep my personal situation close to the vest, but this something I'm making an exception for.
My fiance, Tina, was diagnosed with triple-negative breast cancer (http://en.wikipedia.org/wiki/Triple-negative_breast_cancer) 3 years ago. After chemo and surgery the cancer appeared in her brain a year later. After more drugs, more radiation, a year after that it was back. Since then she has been on a drug called Avastin (http://en.wikipedia.org/wiki/Avastin). 3 months after she started this treatment the tumors were reduced in size by 30%, and since then she has remained on the treatment and they have remained stable. There is absolutely no doubt that this drug is keeping her alive.
Recently an lFDA Advisory Committee (http://online.wsj.com/article/SB10001424052748703724104575379392504495872.htm) has recommended that the drug's approval for treatment of breast cancer that has metastasized to the brain be revoked. They claim that "risk-benefit ratio of [Avastin] when added to the standard chemotherapeutic regimens...may not be considered favorable." I would like for these bureaucratic pencil-pushers to meet Tina, and she is just one of hundreds who has reported improvement with minimal side-effects. I am of the opinion that if the drug saves even one life with minimal side effects then it should be approved. The decision should not be left to Washington suits but should be a decision between the patient and their doctor to weigh side effects vs. benefits.
If you agree, there is an online petition where you can go and very quickly let your voice be heard. If you are of a mind, you can call your representatives or email them and let them know that you are opposed to the FDA revoking Avastin's approval.
link to online petition (http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/)
This is not a sympathy plea, or a request for a pity-party. That's not my thing. Every day that Tina is able to stay on this drug is a good thing, and if you could take just a few minutes and add your name to the petition, she, I, and her 13 year old son Matthew as well as the rest of her family and friends would really appreciate it.
Thanks.
Can you talk to the petition sponsor and ask them to put a social networking (Facebook) link, it will help get the word out to a much larger segment of potential supporters?
Signed, prayers sent, stay strong Rob.
GermanSynergy
09-09-10, 18:10
Signed & prayers inbound, Rob.
signed.. good luck.
whats your alternative if the drug that's keeping her alive gets pulled completely?
kaiservontexas
09-09-10, 18:44
Signed
montanadave
09-09-10, 19:12
Signed and best wishes to you and your fiance.
My wife celebrated 20 years as a breast cancer survivor just a month ago. I hope someday Tina can do the same.
I am in and of course very sorry to hear. Will also say a prayer for her.
So damn unfair.
Quiet-Matt
09-09-10, 19:19
Signed, good luck Rob.
Moose-Knuckle
09-09-10, 19:45
Done and done brother.
SeriousStudent
09-09-10, 20:16
Cancer is a horrible scourge.
Signature added, and prayers sent.
Signed, sent the link out to a few cancer survivors I know as well.
Signed.
I know enough about you, Rob, to know you do dont haphazardly do stuff.
best of luck to you and your mate.
Done. I remember reading about this and wondered why they would do such a thing. as the brother of a breast cancer survivor, I'm horrified having seen first hand how this disease affects these poor women's lives. God Bless...
I never sign these things on principal.
I signed this one without hesitation. Both of you keep on fighting.
wondered why they would do such a thing.
My guess is that the insurance companies don't want to pay for it. If the FDA lists it as non-approved...
Hello Rob,
Signed the petition.
Best wishes to you and yours. For the sake of many, I hope common sense prevails with the FDA and the medication remains approved/ commonly available.
Signed and my prayers have been sent.
Signed with the following note:
I have a friend who is currently experiencing excellent results using this drug and I would be very disappointed if she was not able to continue the treatment that her doctor has prescribed and which has brought a significant reduction in the size of the tumors in her brain.
Please allow Tina to continue to receive this life preserving drug.
Prayers for you, Rob as well as for Tina, and her son.
Buckaroo
Signature # 5,782
I have a sister who only found the lump because she was going in for a breast reduction, glad they got it before it metasticized . . . it was headed that way. Of course we all know that cancer likes to get back up and go another round, chances are she is going to have to fight it again. Thanks Rob for the heads up on this drug & for starting this thread.
Signed. These are decisions doctors and patients should make together.
Cancer Sucks!
I just finished chemo in July for a relapse of my leukemia. They need to let people fight with every tool avalible.
Good Luck.
Signed.
Keep up the good fight!
Signing now - although a different beast my wife has Lyme Disease and the absolute BS and politics of insurance and govt are terrible.
Signed! Prayers Prayed for her!
Signed. I've lost too many family members to breast cancer already. I am also going to pass this on to the warden who will pass it on to her fellow nurses. Be prepared for an avalanche of signers.
Done, glad to help after our exchange of emails re. Tina's sit & my sister's short fight, will keep a good thought for ALLCON.
My mother is a breast cancer survivor. Petition signed.
Patrick Aherne
09-10-10, 05:38
Signed.
Thanks guys, for the signatures, emails, and PMs.
For those that wish to share the petition elsewhere please feel free. Just do me a favor and scrub our names out of it.
arizonaranchman
09-10-10, 09:05
Done. And prayers sent for ur fiance and all involved.
Dirk Williams
09-10-10, 09:29
Signed, good luck.
Dirk
ShortytheFirefighter
09-10-10, 10:23
Signed as well.
Good luck to you and your fiance, my wife and I are praying for you both.
Signed.
Hope everything works out okay.
Signed.
...and prayers sent.
dookie1481
09-10-10, 13:58
Signed and will pass it on.
Jay
Another Added.
Lost an 11 year old Girl close to my family yesterday of Adult Colon Cancer. She was a fighter as your crew are!
Signed.
My mother-in-law battled cancer successfully a few years ago. Her case was very similar in that it began as breast cancer and spread to her brain. I understand you're not looking for sympathy, but you're fiance will be in my prayers anyway. Stay strong.
Signed as well and my very best wishes go out to Rob and his fiancée.
I don't want to hijack what is obviously a very personal thread but, as a doctor, I feel it's important to pass along that this is Obama's future healthcare system...based solely on cost and effect. The reality is that a vast majority of cancer drugs impart very little actual longevity to those with advanced disease and, as such, will be some of the first to go under this system. If it isn't a curative drug, then it isn't going to pass muster.
Again, I'm sorry that your fiancée is facing this kind of uncertainty in what is already a terrible situation but for many many Americans, this is the future with Obamacare.
Done!
Good luck and God bless
Signed.
Working as a RN in a Neuro/Trauma ICU, I know that sometimes off-label uses of medications, over the limit dosing, and forgetting about established protocols can make the difference in a patient's outcome.
Sometimes there is a synergistic effect, where a single drug or treatment alone doesn't do much, but combined with other modalities, there can be a tremendous effect on the disease state.
Besides that, the mental/emotional outlook of a patient can be a powerful ally in beating their illness. Take away a drug that patient thinks is helping, whether it is or not, can generate negative thoughts, and when someone is sick, negative thoughts are never helpful.
The last thing we medical professionals need is some bureaucrat limiting treatment options, i.e. Obama and his quest to socialize our great nation.
Godspeed Rob, to you and your fiance.
RogerinTPA
09-11-10, 18:17
Signed and prayers sent.
Done. Prayers and thoughts.
Gutshot John
09-12-10, 09:40
Having lost my mother to breast cancer. It's done.
Nathan_Bell
09-12-10, 11:21
Can you talk to the petition sponsor and ask them to put a social networking (Facebook) link, it will help get the word out to a much larger segment of potential supporters?
Big plus (Yup. I used the hated term on M4c!)
Need to get this onto FB PDQ!
If you search on Facebook for this the survey comes up.
Those of you on Facebook, you can also help get the word out by simply posting the link to the petition on your page so that everyone in your friends list can see it.
Detective_D
09-12-10, 18:14
Signed. Good luck to you guys and God bless.
~D
Cagemonkey
09-12-10, 18:34
Signed. Keep the faith and God Bless.
Its now up on my facebook page and I've passed it on to 'She Who Shall Be Obeyed". Hell hath no fury like a P.O.d RN
signature #6259
Good luck to you and your fiance.
As I understand it the following people are involved in this decision. If you wouldn't mind taking 5 minutes out of your day to email them and help us make our case for those people who are depending on Avastin, we'd really appreciate it.
patricia.keegan-AT-fda.hhs.gov
margaret.hamburg-AT-fda.hhs.gov
richard.pazdur-AT-fda.hhs.gov
We got a 90 day reprieve!
http://www.washingtonpost.com/wp-dyn/content/article/2010/09/17/AR2010091705743.html
Next on the agenda is to put pressure on the congress-critters to make sure that they, in turn, put the right pressure on the FDA.
I have no doubt in my mind that the only reason even for the reprieve was due to the massive number of emails and the signing of the petition. We shined the light on the little cockroaches and they didn't like it. Now they're hoping we turn the light off and go back to bed, but we can't let that happen.
thank you so much to everyone who signed the petition and sent out emails to their friends and to the FDA.
Cagemonkey
09-18-10, 08:04
Congratulations. I know theirs a long way to go, but its good to make some headway.
William B.
09-21-10, 14:23
Done. Best wishes to you and your family. God bless!
Moose-Knuckle
09-21-10, 17:25
Congrats on the reprieve Rob, good job buddy!
Littlelebowski
02-10-11, 12:22
Bump for a good cause.
Thanks for bumping this, I had kind of forgotten I posted this here.
As it turns out the FDA did revoke approval for the drug in December, which sucks. However subsequently a bunch more research has come out that it may even be harming some people. Of course my suspicious mind thinks that this could easily be propaganda from the insurance companies and the FDA to bolster their position, but it may be a mixed blessing either way.
Thanks so much to everyone that signed the petition though. I means a lot to these patients to see that kind of support.
I was #10,270...keep up the fight bro:)
I debated about whether or not to post this here because I'm typically very private about such things, but you all really reached out and tried to help me when I needed it and so I figured those of you that did so deserved to know the eventual outcome.
My fiance passed away this past Thursday, 26 May 2011 at about noon. She fought the good fight and it was only the last two months that her illness really got the best of her. Hospice helped us care for her at home and she was able to be with her family and friends.
The other reason I was reluctant to post is that her passing had nothing to do with the eventual pulling of the approval for Avastin for her type of cancer. It was just a timing coincidence. I would prefer that her passing not become a political issue.
If you are so inclined the family is asking that donations be given in lieu of flowers or other condolences to Camp Kesem (http://www.campkesem.org/site/c.jvI0ImN0JuE/b.2468145/k.C12A/Donate.htm), a sleep-away summer camp for children of parents who have, or had, cancer. Her son has attended for the last 4 years and will be attending again this year.
Again, this posting is not about pity, sympathy, etc. but is simply meant to update those that tried to help us get her the medicine she needed.
Moose-Knuckle
05-28-11, 18:14
Rob, you have my sincerest condolences.
Dirtyboy333
05-28-11, 18:20
First time a saw this thread but I just signed. Sorry for your loss.
I've had 2 of my closest family members pass away from this horrible disease.
.
Rob,
Sorry for your loss.
.
Littlelebowski
05-28-11, 18:36
Sorry for yours and her son's loss.
Rob, you have my sincerest condolences.
militarymoron
05-28-11, 18:55
sorry to hear this, rob. my condolences to you, her son, and family.
Very, very sorry to hear this news. Like others probably did I just assumed she would pull through. But the harsh reality of life apparently decided not to allow a just ending to the terrible scenario.
Stay strong and God bless.
Sorry to hear this. You and her son have my sincere condolences.
Cagemonkey
05-28-11, 20:46
My sincerest condolences to you and her family.
montanadave
05-28-11, 20:58
I'm very sorry for your loss.
Robb Jensen
05-28-11, 20:59
So sorry to hear of this Rob. You have my sincerest condolences.
ghostman1960
05-28-11, 21:00
Signed and a prayer her way.
SeriousStudent
05-28-11, 21:16
Prayers sent. My sympathies to you and your son. May you both receive peace and strength.
Thank you for sharing Rob.
My deepest condolances to you and her son.
Oh man. You have my deepest sympathies and condolences. I am so sorry for your loss.
Oh, goodness. I am so sorry to hear. Words are inadequate. My condolences to you and her family.
I'm terribly sorry for your loss Rob. You'll be in my family's prayers.
Sorry to hear that man. My condolences.
Really sorry for your loss Rob. Prayers out to you and her family.
The Dumb Gun Collector
05-29-11, 07:16
Sincere condolences man.
RogerinTPA
05-29-11, 07:42
Sorry for you and your son's loss Rob. My sincerest condolences to you and the family.
My sincerest condolenses for your fiance's passing.
Army Chief
05-29-11, 09:21
Not the news that we were hoping to hear, but our sympathies are with you as you work through this difficult time.
AC
SWATcop556
05-29-11, 09:48
Prayers for you and yours.
Rob I am sorry to hear the news. You and your family will be in our prayers.
Rob
You are in my thoughts and prayers.
Deepest sympathies and condolences to you and all those in grieving. Rough stuff.
Magic_Salad0892
05-30-11, 00:55
Prayers inbound, Rob.
So sorry to hear of this. You have my sincerest condolences.
Sorry for you loss Rob.
C4
jklaughrey
05-30-11, 09:08
Sorry for your loss.
I'm sorry Rob. My prayers to you and her son.
My guess is that the insurance companies don't want to pay for it. If the FDA lists it as non-approved...
Yes, Crony Capitalism. And, it would most likely completely bankrupt Medicade/Medicare if patients started to demand it. And, the Obamacare people don't want 'rich' folks to have access expensive drugs that Obamacare won't pay for when it goes live in 2014.
So you have a lot of forces conspiring against the patients themselves.
Avastin is an awesome drug but it does run about $50-100K a year for treatment.
http://en.wikipedia.org/wiki/Bevacizumab
Prayers sent for you and the family.
Yes, Crony Capitalism. And, it would most likely completely bankrupt Medicade/Medicare if patients started to demand it. And, the Obamacare people don't want 'rich' folks to have access expensive drugs that Obamacare won't pay for when it goes live in 2014.
So you have a lot of forces conspiring against the patients themselves.
Avastin is an awesome drug but it does run about $50-100K a year for treatment.
http://en.wikipedia.org/wiki/Bevacizumab
I realize that the companies that develop medications spend a good amount on R&D and have to recoup their costs, but..
I am truly sorry for your loss. I hope you can move forward when ready and not let tangential issues slow you down.
Dennis.
I realize that the companies that develop medications spend a good amount on R&D and have to recoup their costs, but..
A lot of people think this. A lot of people have also never taken even a first year organic chemistry course. Making drugs like this are incredibly complicated and expensive.
militarymoron
05-31-11, 20:54
Making drugs like this are incredibly complicated and expensive.
cost of developing a new drug is about $1.3 billion.
I am sorry Rob; my prayers to you and her son.
My condolences to you & yours, Rob
Rob, I'm terribly sorry for your loss. That's a tough blow.
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