OHSU New campaign fundraiser - We're cured!?!?
Posted 07 May 2014 - 07:48 PM
Depends on your definition of "cure".
If cure means cancer completely eradicated, then no, most of us are not cured.
But if you define it as able to live your normal lifespan, such that you eventually die from something else, then yeah, that probably would be a cure to some people. In particular, those people with cancers that have low survival rates would love to have a drug like gleevec.
Obviously, this discounts any debilitating side effects or financial problems due to high drug costs.
But, all In all, our survival chances are enviable. And a lot of oncologists would be thrilled with those survival rates. They see so many people waste away. I think your average oncologist would consider keeping a cancer under control with fairly tolerable oral drugs to be success, and the next best thing, if not a cure.
Posted 07 May 2014 - 08:40 PM
I find this campaign harmful. We are not cured. They are using us and the word cured to raise one billion dollars by Dec. 15, 2015. Who knows what our insurance companies will do with this?
Posted 08 May 2014 - 06:41 AM
When everyone has access to these medicines and when no one has to die because they can't afford these medicines that would really be something! I asked my doctor the last time I saw him if he had ever had a patient die because the patient could not afford the medicine and for no other reason. I don't know if I was more shocked because he had one such patient, or because he had only one such patient.
It is appalling to me that in a country like the United States and any other developed country in the world there are still working people who die simply because they don't have enough money to feed, clothe and obtain adequate health care for themselves and their families. That would be a cure, or at the very least a good start!
I know that makes me sound like such a bleeding heart but it makes me angry!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 08 May 2014 - 12:01 PM
I find this campaign pretty offensive. I commented on their FB page that I was still waiting for my "cure." I saw they issued an "appology" but are doing nothing to change the wording. Do you know if Dr. Druker has made any comments about this campaign? I hels the Knight Cancer Institue in high regard but now I am not so sure. They really minimized the suffering of a lot of people with this campaign. We already fight against the perception that we have it easy because we don't loose our hair from Chemo treatments, and the doctors who say the side effects we are feeling are not because of the drugs, and now we have OHSU telling the world we have been cured.
Posted 08 May 2014 - 12:34 PM
What doctors say what side effects arent from the drugs. Id like them to take ths sh*t for a while and say that
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Posted 08 May 2014 - 12:39 PM
I know. I have read more posts here and on other discussion boards where people say their docs have told them their ailments were not side effects when we all know they are.
Posted 08 May 2014 - 02:07 PM
I don't know how involved Dr. Druker was in the campaign, if he was at all. Dr. Mauro tweeted a tweet saying it wasn't a true cure, but they, and he included Dr. Druker, were working on a cure.
Posted 11 May 2014 - 11:18 PM
Letter to the CML Community from Dr Brian Druker
"Words can provide hope and inspire people to action. They can also evoke powerful emotions. In launching a campaign to raise funds for cancer research, we saw a message of hope and a rallying cry to spark engagement from people. Some in the CML community—a community we consider of vital importance to our efforts—disagreed.
We've heard from CML patients who feel the word 'cure' used in the campaign takes focus off the challenges they face. Some have side effects from therapy, concerns about their medical bills or fears of what will happen if the treatment stops working. Some even feel marginalized by those with other cancers who express that they should feel "lucky." And there is worry that we may imply that no more progress is needed in treating CML.
We understand, and apologize. We're making significant changes to our campaign. We encourage your constituents to revisit our website to see the changes we've made there. We're focusing our message on those concepts that are more universally accepted: that we have revolutionized the treatment of CML with Gleevec® and turned a deadly cancer into one where life expectancy mirrors that of the general population.
In making this decision, I share the following thoughts.
I see patients every week in clinic who alert me to side effects they are experiencing. Many of these side effects can be addressed. For the majority of CML patients, with good medical management, individuals can not only survive, but have a good quality of life. I was concerned by the number of posts I saw that seemed to indicate otherwise. I urge patients to please talk to their medical providers about side-effects and other concerns so they can help. I also want to assure the community that my lab continues to work on CML in an effort to find better therapies and ultimately a way for all patients to safely stop treatment.
I also encourage people to recognize that there are many different perspectives. Every person's cancer journey is different. We need to embrace these perspectives. Those who feel cure is the right word for their experience should be as respectfully treated as those who do not.
We want to be transparent that we plan on retaining our website and tagline, onedown.org. This idea is core to our goal of funding research. With Gleevec, we've created a life-saving treatment, and we want to discover more Gleevecs for more cancers. We want to move the conversation from cancer awareness to making cancer the victim. To do this, we must let people know that there has been a significant victory in that battle, regardless of the word one uses to describe it. We hope this is a position everyone can support.
Brian J. Druker, MD
Director, OHSU Knight Cancer Institute"
Posted 12 May 2014 - 12:36 AM
Interesting comment from Dr Druker re side effects.
I think my quality of life is pretty good, compromised sure, but still good. In my case it's that way because I switched off gleevec to tasigna. My life was still worth living on gleevec, but less so.
I have a second cousin who is one of the chemists who worked on the drug that became gleevec. I met him a year after dx and from the way he spoke about the drug development and the clinical trials the development of gleevec was clearly a career highlight. One thing of note is that he was convinced that gleevec had no side effects. He was sad to see that I was struggling with the side effects. I suspect he thought I was unusual as during the early stages the reports were no side effects. Having been on interferon for only 3 months I can imagine why the initial reports of gleevec side effects were so positive. The cost of those early overly positive reports is that some doctors still don't recognise side effects. Of course we are massively happy that we have these effective treatments and my Swiss cousin is pretty chuffed that something he worked on is saving the life of a family member on the other side of the world.
Back to Dr Druker's statement. I remember reading and being told that my doctor would treat the side effects as necessary. Well when it comes to side effects my doctor acknowledges and documents (which I appreciate) and does a good job of checking that nothing is dangerous, but there is very little treating of side effects.
I would also say that those people who believe that gleevec has cured their CML (perhaps with the exception of those who have been able to successfully stop treatment) should be treated respectfully as Dr Druker says. Then if those people have any interest in understanding their own medical condition (which not all people have) they should be sat down and told that they still have cancer. A medical researcher shouldn't be "embracing" (his words) the perspective of somebody who doesn't understand their disease, no matter how much good PR (funding) it brings.
I'm a research engineer who's life has been changed by a recent medical breakthrough. I could talk all day about how important medical research is, how we (particularly in Australia) should be investing so much more into it. But research is very expensive and even for these guys, who have been so successful, money to keep going is hard to get. The politics of getting funding is never pretty. I'm not surprised their PR team pushed the boundaries.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 12 May 2014 - 02:00 AM
I read Dr. Druker's note when it first came out. He actually called some of the upset CML patients which impressed me. He is a man to be admired. I was surprised at him being surprised at all the side effects people were reporting to him. I wonder what advice he gives to his patients with side effects? My Onc doesn't doesn't do much for my side effects. My PCP takes care of those.
I want OHSU to get their funds for more research, but at the same time I don't want CML'ers thrown under the bus. I'm glad they changed the wording but #onedown still sounds like CML is over.
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