Unfortunately I must inform everyone that my cancer has returned once again. I received a call Dec, 17th with the news. I held off making it public, as I didn't want to make Christmas a bummer for my friends and family, a little selfish maybe, but overall I think I made the right decision.
I was informed by my Medical Oncologist that there are two affected nodes which have increased in size since my last scan in Jan/09. The affected nodes are in the Mediastinal region behind the Thymus gland, rather deep.
My Medical Oncologist has already consulted with my Radiation Oncologist and they have concluded that there also needs to be a biopsy of the affected nodes to find out what we are dealing with. Is it the Hodgkin or Non-Hodgkin. As the nodes are deep it sounds like there might have to be a surgery to get at them for the biopsy.
I had a bone marrow biopsy done on the 23rd of December, and had a Gallium scan done today. So I am hoping to know a lot more by early next week or even sooner if that is possible, but probably not realistic.
So, time to put the gloves back on for the 5th time in 4 years and knock this crap out once and for all!
Tim, xxx
Thursday, January 6, 2011
Tuesday, December 7, 2010
Another year older, and another year wiser
Well, here it is December 8th once again (yeah I know it's only the 7th) and I will be turning 52 this year. My how the years pass, I can remember only four years ago, being diagnosed with a cancer that gave me two and a half to five year survival odds if you were to listen to the numbers, and saying I just wanted to make it to my 50th birthday. Which I did, I was in the hospital in London at the time undergoing a bone marrow/stem cell transplant, but it made it! Now what? .Thus the wiser part, they are only numbers and if you listen to them and let them dictate you, you will end up proving them right! DON'T LISTEN TO THE NUMBERS! I did however set the bar a little higher and am shooting for fifty five now! I set the bar higher again when I get there but for now will take it a day at a time as it comes.Yes, I am a year older and really do feel the age creeping up on me, and having gone through all I've been through that is a "normal" feeling. I had someone put it to me this way once. As a cancer patient you can add about twenty years to the way you feel. So let's see then, that makes me 52 going on 82! Yeah, that seems just about right some days. I could sit here and spend hours writing and whining about how I feel but what would that accomplish other than wasted time. I do allow myself days here and there to complain and whine about how I feel, but I don't let it take over every day, hour and minute of my life.
Most of you who really know me, have most likely seen a transformation with me and how I interact and deal with things and people now. Having cancer and doing the battle changes you in ways that are just to hard to describe to people. Those of you in the fight and even some of the caregivers in the fight "get it". Live is too short people and it can be taken from you in an instant. When you "get it" you make life a priority, the little things make a difference, being kind to others makes a difference, and it makes you feel good too when you help another human being. Your outlook becomes different, the material things are not important, nice to have, but not important. Being comfortable, eliminating all your stresses, giving back in some form or another, those are the things that will get you through the battle.
Brenda just asked me today, "what do you want for your birthday", I thought for a second the told her, I really don't NEED anything. What do I WANT? Well, my answer was let's go to a show this afternoon. We have to take in an early one because we have Brenda's weight loss surgery group Christmas party tonight in place of the regular monthly meeting. The only real thing I would like, but don't necessarily need....., a birthday cake! who doesn't like cake.
So to sum it all up for today, go out and make a difference to/for someone, don't matter who it is, even better if it's a perfect stranger. Pay it forward is the greatest gift you could ever give yourself. Does it work? absolutely it does I've recently had some good deeds come back to me for things I've done for other people many years ago. So you may not see the return of your deed for years or for that matter, ever! Does it matter? Nope, not at all, just feels good doing it, and if it comes back to you that is fine too, but not important.Well that's enough babbling from me, probably not even making sense with the way it came out but if you make a difference in someones life today then I've accomplished something.
Wishing everyone a great day no matter where you are in your journey's, and thoughts, prayers, and good vibes, to our friend Cathy Fisher Morris who is now on the better side of the bone marrow/stem cell transplant she is currently undergoing.
Tim, xxx
Saturday, December 4, 2010
The Latest Ramblings and Such.
This is just an update of the latest that's been going on. Since my six month check-up with Dr. Kanjeekal I have gotten a call from the Diagnostic Imaging Dept. at Windsor Regional Hospital for my C/T scan appointment date and times. I have made it through the "scanxiety" days before the scan, and now await the results, could be a week or so. I do not anticipate any surprises, but with these things one can never tell.So now I go through all the "normal" worries and thoughts while I wait for the results, Karla, Dr. Kanjeekal's nurse told me to call in a week after the scan if I have not heard anything by then. I would think that if my phone does not ring in the next week with a call from them, that would mean I am in the clear.
Well, we've made the decision this year to dig out and assemble all the Christmas decorations and tree. We have not had anything up other than the small ceramic tree since I got ill in 2006
 |
| My lovely wife Brenda and I posing for our annual Christmas Card photo in Santa's Castle |
Tuesday, November 23, 2010
The latest from Cancer Care Ontario
Cancer Care Ontario releases action plan to improve the patient experience
Progress being made, but more to be done for the 400,000 Ontarians living with cancer in 2015
November 23, 2010 @ 02:00PM
TORONTO, ON - The third edition of the Ontario Cancer Plan (OCP) ensures our cancer system serves the changing and growing needs of Ontarians. The Cancer Plan outlines priorities for cancer services, sets a course to transform cancer services from the patient perspective, and is driven by a commitment to quality across the cancer journey – from prevention to survivorship or palliative care – as the most effective way to manage cancer.
The release of the original Ontario Cancer Plan in 2004, was the first multi-year cancer plan developed in Canada.
“We have made tremendous gains in the fight against cancer since the first Ontario Cancer Plan,” said the Honourable Deb Matthews, Minister of Health and Long-Term Care. “The Ontario Government has expanded cancer centres and is now publicly reporting wait times for cancer surgery, radiation and chemotherapy. We have made great progress in reducing wait times for cancer patients. We will continue to work side by side with Cancer Care Ontario and health providers on the front lines to prevent and lessen the toll of cancer.”
“For the past six years we have expanded capacity and improved access to high quality cancer services to meet the growing needs of Ontarians,” said Terrence Sullivan, president and CEO, Cancer Care Ontario. “With this strong foundation, we are now focusing more on meeting the needs of patients and increasing access to new developments in personalized medicine.”
“We have listened and talked directly to patients, doctors, nurses and our partners in cancer care. We know patients want to understand and have more control over their own care and more information. This will not only help patients, it will help us improve outcomes overall,” said Michael Sherar, vice president, Planning and Regional Programs, Cancer Care Ontario.
By 2015:
The Plan builds on the successes of the first two cancer plans. These have driven tremendous strides in Ontario’s cancer program, including:
The strategic priorities outlined in the 2011-2015 Plan will build on these successes, helping people decrease their risk of developing cancer, reducing the impact of cancer through screening and early detection, ensuring access to the right treatment at the right time and strengthening Ontario’s ability to improve cancer control through research.
Cancer Care Ontario continually improves cancer services so that fewer people get cancer and patients receive better care.
Just below is the link to the actual Social Media Release from Cancer Care Ontario, you can see the release in it's entirety here,
http://tinyurl.com/27tysfh
The release of the original Ontario Cancer Plan in 2004, was the first multi-year cancer plan developed in Canada.
“We have made tremendous gains in the fight against cancer since the first Ontario Cancer Plan,” said the Honourable Deb Matthews, Minister of Health and Long-Term Care. “The Ontario Government has expanded cancer centres and is now publicly reporting wait times for cancer surgery, radiation and chemotherapy. We have made great progress in reducing wait times for cancer patients. We will continue to work side by side with Cancer Care Ontario and health providers on the front lines to prevent and lessen the toll of cancer.”
“For the past six years we have expanded capacity and improved access to high quality cancer services to meet the growing needs of Ontarians,” said Terrence Sullivan, president and CEO, Cancer Care Ontario. “With this strong foundation, we are now focusing more on meeting the needs of patients and increasing access to new developments in personalized medicine.”
“We have listened and talked directly to patients, doctors, nurses and our partners in cancer care. We know patients want to understand and have more control over their own care and more information. This will not only help patients, it will help us improve outcomes overall,” said Michael Sherar, vice president, Planning and Regional Programs, Cancer Care Ontario.
By 2015:
- Every person in Ontario will be able to calculate their personal risk for developing cancer and be linked to resources to help reduce their risk.
- Primary care providers will be equipped with on-line tools to help people decrease their risk of cancer.
- Every cancer patient in Ontario will have:
- Access to more information tools, online and hands-on assistance in the form of Patient Navigators,
- The chance to give feedback on their experience with cancer, and
- Their interests represented through a Patient Advisory Council.
- All screening programs will be integrated and supported by one electronic system, automatically sending invitations to participate and reminders to screen at the right time. An Aboriginal Patient Navigator program will exist to provide culturally sensitive assistance for Aboriginal patients.
- The cancer journey from the patient’s perspective for the most common types of cancer will be mapped to identify and address gaps and ensure patients are treated according to the best evidence and improve the performance of our Regional Cancer Programs.
- The cancer system will be equipped to quickly determine which new cancer therapies are the most effective and ensure these therapies are introduced and made available to patients. This process will be informed by the best available research and researchers.
The Plan builds on the successes of the first two cancer plans. These have driven tremendous strides in Ontario’s cancer program, including:
- Increasing the use of evidence to develop standards and guidelines,
- Establishing the 14 Regional Cancer Programs,
- Opening four new cancer centres in:
- Kitchener (Grand River Regional Cancer Centre)
- Mississauga (Carlo Fidani Peel Regional Cancer Centre)
- Oshawa (R.S. McLaughlin Durham Regional Cancer Centre)
- Newmarket (Stronach Regional Cancer Centre)
- Expanding centres in London, Sudbury, Hamilton, and Ottawa at the Queensway Carleton Hospital,
- Reducing wait times, particularly in surgery and radiation,
- Consolidating complex surgeries (thoracic and HPB),
- Launching ColonCancerCheck (CCC) to increase screening for colorectal cancer, and the Smoke Free Ontario Strategy, and
- Beginning the Ontario Health Study (OHS).
The strategic priorities outlined in the 2011-2015 Plan will build on these successes, helping people decrease their risk of developing cancer, reducing the impact of cancer through screening and early detection, ensuring access to the right treatment at the right time and strengthening Ontario’s ability to improve cancer control through research.
Cancer Care Ontario continually improves cancer services so that fewer people get cancer and patients receive better care.
Just below is the link to the actual Social Media Release from Cancer Care Ontario, you can see the release in it's entirety here,
http://tinyurl.com/27tysfh
Sunday, November 21, 2010
Make Bexxar Accessible! petition UPDATE:
We felt that the meeting was productive in that we received no "push back" on our concerns ... That is, we felt that our concerns were listened to and considered valid, which were:
1) That the policy change will delay use of Bexxar up to a month - depending on if the need for the drug arises during distribution periods within the month. We noted that experts share our expectation and concern: that usage of Bexxar will decrease further - and that the following expert remark is widely held:
"So yes it will reduce use since some pts whose schedule doesn't fit will have to get something else."
... And that trial enrollment will also slow down as centers will not be able to treat as many patients per month in the Bexxar-based protocols (this was confirmed by a contact at Fred Hutch)
2) That decreased patient access to Bexxar because of a new policy - along with the perception of difficulties in getting access - will contribute further to decreased usage of Bexxar - leading to a downward spiral – leading to the extinction of a vital drug.
3) That Bexxar has not been marketed sufficiently, ever.
We disagreed that FDA is the reason for GSK's inability to market Bexxar sufficiently, citing that there is no regulation prohibiting distribution of journal reports - even for off-label use.
I offered to assist GSK in these matters at FDA.
4) That Bexxar is a unique drug - in that it has the longest follow up data and that all of the data strongly and consistently suggests curative potential, even if no one study proves this definitively.
5) That patients expect GSK to recommit to Bexxar by studying it further, by marketing it appropriately, by pressing for reimbursement reform, and by training more physicians in its administration.
Betsy offered to assist in helping with reimbursement reform at CMS, and asked that GSK provide experts to educate patients about the drug at education forums.
Liz made it plain that oncologists, investigators, and patients were not adequately consulted about the policy change - at least the experts we consulted in this matter.
Dr. Kaminski provided many expert perspectives, such as on the outcome data, and remarked that even the thought leaders in the lymphoma community are failing to recognize the importance of it - particularly when you consider the length of the follow up - 10 years and more.
So what's next?
We will follow up with GSK and ask that they answer our concerns and provide evidence of a change in policy and marketing commitment.
We cannot force a corporation to maintain a drug that is losing money, but we can show GSK that there will be a public relations price to pay for giving up on a unique and vital drug too soon - one that patients helped to bring to the clinic by participation in clinical trials.
(Drugs, unlike cars and toothpaste products, can provide unique societal benefits and require not just financial risks by shareholders - but also require that individuals take substantial risks when the drug is administered into our veins when studied.)
Will that be enough to change corporate policy? We don't know.
All the best,
Karl Schwartz
President Patients Against Lymphoma
www.lymphomation.org
Karl's open letter to GSK sent with petition:
http://www.facebook.com/notes.php?drafts&id=1379719365#!/note.php?note_id=497928551998
6 Month check-up.
Well, once again it was time for my six month check-up with Dr. Kanjeekal, my medical oncologist at the cancer center. Went over the past six months with Karla her nurse and brought her up to speed on all that was going on. Only three issues really that were on my mind and nagging at me for answers. 1. Have been having bowel problems lately and not really sure what is going on, or not going on! there lately. 2. This strange feeling and occasional pain that runs alongside the right side of my nose up to my right eye area, headaches on that side once and a while too. and finally 3. A lump!, yes, a very small one, but a lump none the less on the right side of my neck. I've been writing it off as just some scar tissue from previous biopsy surgeries in that area. However it's "new" since my last visit with Dr. Schneider, so I needed to point it out.
Karla left the examining room with my list of issues, or,as I call them, lumps and bumps reports to go over with the Dr. before she comes in. I must also point out that I was early for my appointment and had fully expected to be waiting a while, but was pleasantly surprised when my "pager" went off indicating it was my turn after only 10-15 minutes. The Windsor Regional Cancer Center using a paging system to notify patients of their turn to see their Dr. This system was implemented last year in order to protect the confidentiality of patients who did not want their names called in public. This system was also being used at the London Health Sciences Center in London, ON. when I was going up there for my pre bone marrow transplant testing.
It was only a matter of minutes before Dr. Kanjeekal came into the examining room. She asked what had been going on and what exactly were the issues I had mentioned to Karla. I filled her in on all the details of what had been going on with the things I mentioned. She went on to do the normal "poking and prodding" of all the key areas us lymphoma patients have had issues with, neck, armpits, abdomen, and in particular the area of the spleen, and groin. Nothing remarkable for her to note. After explaining the thing going on alongside my nose up to my eye, she did not think it was anything important at this stage and just said to keep watching it, the same thing for the "lump" on the right side of the neck. Keep an eye on it and to call in immediately if I think it's getting any bigger at all, she feels it is just scar tissue from the past surgery in that area. She then said it had been some time since my last C/T's of these areas and that it would rule out anything going on related to the bowel problems. My last few scans were only from the neck up, and we were already aware there was black empty space there! She asked to give her a moment and she excused herself form the room. Returning in just a few moments she had my next appointment card for me and a slip for a C/T of the chest, abdomen and groin. The C/T was just being set up as precautionary and routine.
The Dr. also took a look at my blood work results which were in, I had gone to the lab and had blood work drawn, as I was due for my three month blood work draw anyway and figured it would be in Dr. Kanjeekal's office by the time I got up there, as I had an earlier appointment with my social worker at the center. My blood work was all fine. So other than a call to wait on for the C/T appointment, I will see Dr. Kanjeekal again in six months.
So folks nothing significant to report at this time, however I will post results of C/T after it is done. Just to mention, I am still dealing with all the other side effects from all of the chemo and radiation treatments, the CIPN, the Chemo Brain, the weakness, the tiredness. which have all become "normal" parts of my daily life now, and it's been a struggle at times learning to deal with them all and accepting they are part of my daily life now. Not whining or complaining here, just stating what is going on. So until next time, hugs to all no matter where you are in your life's journey.
Karla left the examining room with my list of issues, or,as I call them, lumps and bumps reports to go over with the Dr. before she comes in. I must also point out that I was early for my appointment and had fully expected to be waiting a while, but was pleasantly surprised when my "pager" went off indicating it was my turn after only 10-15 minutes. The Windsor Regional Cancer Center using a paging system to notify patients of their turn to see their Dr. This system was implemented last year in order to protect the confidentiality of patients who did not want their names called in public. This system was also being used at the London Health Sciences Center in London, ON. when I was going up there for my pre bone marrow transplant testing.
It was only a matter of minutes before Dr. Kanjeekal came into the examining room. She asked what had been going on and what exactly were the issues I had mentioned to Karla. I filled her in on all the details of what had been going on with the things I mentioned. She went on to do the normal "poking and prodding" of all the key areas us lymphoma patients have had issues with, neck, armpits, abdomen, and in particular the area of the spleen, and groin. Nothing remarkable for her to note. After explaining the thing going on alongside my nose up to my eye, she did not think it was anything important at this stage and just said to keep watching it, the same thing for the "lump" on the right side of the neck. Keep an eye on it and to call in immediately if I think it's getting any bigger at all, she feels it is just scar tissue from the past surgery in that area. She then said it had been some time since my last C/T's of these areas and that it would rule out anything going on related to the bowel problems. My last few scans were only from the neck up, and we were already aware there was black empty space there! She asked to give her a moment and she excused herself form the room. Returning in just a few moments she had my next appointment card for me and a slip for a C/T of the chest, abdomen and groin. The C/T was just being set up as precautionary and routine.
The Dr. also took a look at my blood work results which were in, I had gone to the lab and had blood work drawn, as I was due for my three month blood work draw anyway and figured it would be in Dr. Kanjeekal's office by the time I got up there, as I had an earlier appointment with my social worker at the center. My blood work was all fine. So other than a call to wait on for the C/T appointment, I will see Dr. Kanjeekal again in six months.
So folks nothing significant to report at this time, however I will post results of C/T after it is done. Just to mention, I am still dealing with all the other side effects from all of the chemo and radiation treatments, the CIPN, the Chemo Brain, the weakness, the tiredness. which have all become "normal" parts of my daily life now, and it's been a struggle at times learning to deal with them all and accepting they are part of my daily life now. Not whining or complaining here, just stating what is going on. So until next time, hugs to all no matter where you are in your life's journey.
Sunday, November 7, 2010
Make Bexxar Accessible! Please take a moment to sign this petition.
I have recently been made aware of a situation by a personal friend and fellow survivor that requires my and everyone else's help that is concerned about non-Hodgkin lymphoma and the medications that may put you or a loved one into a long term remission.
Please take a moment to click on the link below and sign the petition.
http://www.thepetitionsite.com/1/bexxar/
Also, if your on Facebook, take a moment to "Like" and join the Supporters of Radioimmunotherapy for non-Hodgkin Lymphoma page and leave your comments.
http://www.facebook.com/pages/Supporters-of-Radioimmunotherapy-for-non-Hodgkin-Lymphoma/143127185734905
Thank you in advance to each and everyone of you who sign the petition and join in on the movement to keep the world aware. Now find below the message I received from my friend asking for our help.
From a friend, and fellow NHL survivor :
This is WAY past my bedtime but there’s a reason. Some of you remember the crisis RIT faced at the end of 2007 when CMS (Centers for Medicare and Medicaid Services) threatened to slash payment for both Bexxar and Zevalin and PAL and I were involved in a grassroots effort that help save it. Well, here we are three years later and RIT faces another crisis that will further reduce patient access and have a serious impact on clinical trials. Please read this and I hope you’ll sign another petition (sorry about these petitions lately!). Here’s the deal.
I just learned yesterday that in a letter to health care providers, GlaxoSmithKline (GSK), Bexxar’s manufacturer, announced its decision to reduce production and availability of Bexxar, effective November 1, 2010, saying that “the infrequent demand for BEXXAR, coupled with its significant production costs, meant that our on-demand service would not be sustainable.” It will still be available, but only on certain limited dates which will obviously have a serious impact on patients and on clinical trials.
The reasons for the “infrequent demand” of Bexxar and Zevalin have been well documented and discussed. However, to my knowledge, no mention has ever been made that GSK shares some responsibility for the underutilization of Bexxar because the company has made no recent effort to market the drug or to educate physicians and patients about the treatment. Spectrum, Zevalin’s manufacturer, has done a much better job. Its 3rd quarter sales increased 64% over the same period last year.
So why should we care about Bexxar? As we all know, Rituxan is almost always combined with chemotherapy and it is frequently used for maintenance, and I have long wondered what might happen if we no longer respond to Rituxan based therapies. In recent interviews with Dr. Mark Kaminski and Dr. Christopher Flowers, both stated that Rituxan-resistant lymphoma cells can be created in the lab. Dr. Kaminski elaborated when I asked him, “Since Rituxan is a component of Zevalin, does anybody really know how effective RIT is if someone becomes refractory….?”
His answer: “…this is not a direct comparative trial, but just looking at the data side by side – the number of complete responders to Bexxar was more than double that of those to Zevalin in this particular situation, i.e., Rituximab refractory patients. And it might be because Bexxar uses a different antibody, a different CD-20 than Zevalin. Zevalin is essentially radiolabeled Rituxan. Bexxar is binding to a different part of the protein and it evokes a different immunological response than what Rituxan does. And so to me, it makes more sense to try a different antibody with radioimmunotherapy than repeating but just adding a little radiation with Zevalin in those particular instances.”
In other words, because the antibody in Bexxar is different and attaches to a different part of CD20 than Rituxan, Bexxar may work when Rituxan based therapies don’t – and we have to remember that Rituxan is part of Zevalin. Therefore, if we lose Bexxar, we lose an option – and I don’t think anybody is willing to give up any one of our options.
Where does Bexxar really stand? Supposedly, GSK’s decision to limit production is final, although there may be a chance the company will reconsider. A group of lymphoma specialists, led by Dr. Kaminski, is banding together to present scientific evidence to the company’s top management in hopes of convincing the company to change its mind. After a whirlwind of strategizing, this group of doctors is our best hope and I believe that it’s appropriate to let them take the lead, especially since they already have access to GSK and its ear. I think it would only interfere if lots of people start bombarding – plus we don’t really know who to bombard.
However, to supplement the docs’ argument, we patients/survivors/friends/family members can ask GSK to keep Bexxar accessible by signing a petition at http://www.thepetitionsite.com/1/bexxar/ which was created by Supporters of Radioimmunotherapy for non-Hodgkin Lymphoma (me). The docs will deliver the petition to GSK. If you have questions about it, let me know. Also, although the petition site’s goal says 500, the real goal is get 1,000 signatures in the next week if that’s even remotely possible. So I hope you’ll sign and share with family and friends – every signature will count. Same with the Supporters FB page – it needs to rack up friends fast so I hope you’ll like and share: http://www.facebook.com/pages/Supporters-of-Radioimmunotherapy-for-non-Hodgkin-Lymphoma/143127185734905
So as you can see this is very important. And to close with a couple of quotes from GlaxoSmithKline USA, which contradict's this move to limit production of Bexxar!
"GSK Oncology is dedicated to producing innovations in cancer that will make profound differences in the lives of patients. Through GSK’s revolutionary ‘bench to bedside’ approach, we are transforming the way treatments are discovered and developed, resulting in one of the most robust pipelines in the oncology sector. Our worldwide research in oncology includes collaborations with more than 160 cancer centers. GSK is closing in on cancer from all sides with a new generation of patient focused cancer treatments in prevention, supportive care, chemotherapy, and targeted therapies."
"GlaxoSmithKline – one of the world’s leading research-based pharmaceutical and healthcare companies – is committed to improving the quality of human life by enabling people to do more, feel better, and live longer. For further information please visit www.gsk.com."
Just not seeing the commitment here on your part GSK! Stop this action to limit the production of Bexxar now!
Please take a moment to click on the link below and sign the petition.
http://www.thepetitionsite.com/1/bexxar/
Also, if your on Facebook, take a moment to "Like" and join the Supporters of Radioimmunotherapy for non-Hodgkin Lymphoma page and leave your comments.
http://www.facebook.com/pages/Supporters-of-Radioimmunotherapy-for-non-Hodgkin-Lymphoma/143127185734905
Thank you in advance to each and everyone of you who sign the petition and join in on the movement to keep the world aware. Now find below the message I received from my friend asking for our help.
From a friend, and fellow NHL survivor :
This is WAY past my bedtime but there’s a reason. Some of you remember the crisis RIT faced at the end of 2007 when CMS (Centers for Medicare and Medicaid Services) threatened to slash payment for both Bexxar and Zevalin and PAL and I were involved in a grassroots effort that help save it. Well, here we are three years later and RIT faces another crisis that will further reduce patient access and have a serious impact on clinical trials. Please read this and I hope you’ll sign another petition (sorry about these petitions lately!). Here’s the deal.
I just learned yesterday that in a letter to health care providers, GlaxoSmithKline (GSK), Bexxar’s manufacturer, announced its decision to reduce production and availability of Bexxar, effective November 1, 2010, saying that “the infrequent demand for BEXXAR, coupled with its significant production costs, meant that our on-demand service would not be sustainable.” It will still be available, but only on certain limited dates which will obviously have a serious impact on patients and on clinical trials.
The reasons for the “infrequent demand” of Bexxar and Zevalin have been well documented and discussed. However, to my knowledge, no mention has ever been made that GSK shares some responsibility for the underutilization of Bexxar because the company has made no recent effort to market the drug or to educate physicians and patients about the treatment. Spectrum, Zevalin’s manufacturer, has done a much better job. Its 3rd quarter sales increased 64% over the same period last year.
So why should we care about Bexxar? As we all know, Rituxan is almost always combined with chemotherapy and it is frequently used for maintenance, and I have long wondered what might happen if we no longer respond to Rituxan based therapies. In recent interviews with Dr. Mark Kaminski and Dr. Christopher Flowers, both stated that Rituxan-resistant lymphoma cells can be created in the lab. Dr. Kaminski elaborated when I asked him, “Since Rituxan is a component of Zevalin, does anybody really know how effective RIT is if someone becomes refractory….?”
His answer: “…this is not a direct comparative trial, but just looking at the data side by side – the number of complete responders to Bexxar was more than double that of those to Zevalin in this particular situation, i.e., Rituximab refractory patients. And it might be because Bexxar uses a different antibody, a different CD-20 than Zevalin. Zevalin is essentially radiolabeled Rituxan. Bexxar is binding to a different part of the protein and it evokes a different immunological response than what Rituxan does. And so to me, it makes more sense to try a different antibody with radioimmunotherapy than repeating but just adding a little radiation with Zevalin in those particular instances.”
In other words, because the antibody in Bexxar is different and attaches to a different part of CD20 than Rituxan, Bexxar may work when Rituxan based therapies don’t – and we have to remember that Rituxan is part of Zevalin. Therefore, if we lose Bexxar, we lose an option – and I don’t think anybody is willing to give up any one of our options.
Where does Bexxar really stand? Supposedly, GSK’s decision to limit production is final, although there may be a chance the company will reconsider. A group of lymphoma specialists, led by Dr. Kaminski, is banding together to present scientific evidence to the company’s top management in hopes of convincing the company to change its mind. After a whirlwind of strategizing, this group of doctors is our best hope and I believe that it’s appropriate to let them take the lead, especially since they already have access to GSK and its ear. I think it would only interfere if lots of people start bombarding – plus we don’t really know who to bombard.
However, to supplement the docs’ argument, we patients/survivors/friends/family members can ask GSK to keep Bexxar accessible by signing a petition at http://www.thepetitionsite.com/1/bexxar/ which was created by Supporters of Radioimmunotherapy for non-Hodgkin Lymphoma (me). The docs will deliver the petition to GSK. If you have questions about it, let me know. Also, although the petition site’s goal says 500, the real goal is get 1,000 signatures in the next week if that’s even remotely possible. So I hope you’ll sign and share with family and friends – every signature will count. Same with the Supporters FB page – it needs to rack up friends fast so I hope you’ll like and share: http://www.facebook.com/pages/Supporters-of-Radioimmunotherapy-for-non-Hodgkin-Lymphoma/143127185734905
So as you can see this is very important. And to close with a couple of quotes from GlaxoSmithKline USA, which contradict's this move to limit production of Bexxar!
"GSK Oncology is dedicated to producing innovations in cancer that will make profound differences in the lives of patients. Through GSK’s revolutionary ‘bench to bedside’ approach, we are transforming the way treatments are discovered and developed, resulting in one of the most robust pipelines in the oncology sector. Our worldwide research in oncology includes collaborations with more than 160 cancer centers. GSK is closing in on cancer from all sides with a new generation of patient focused cancer treatments in prevention, supportive care, chemotherapy, and targeted therapies."
"GlaxoSmithKline – one of the world’s leading research-based pharmaceutical and healthcare companies – is committed to improving the quality of human life by enabling people to do more, feel better, and live longer. For further information please visit www.gsk.com."
Just not seeing the commitment here on your part GSK! Stop this action to limit the production of Bexxar now!
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