Two years ago on December 13 2006 I received terrible news of a major cancer recurrence. Last year on this date, I wrote about that day in 2006 and said that I hoped to be able to write about it again the following year. Well, against big odds, here I am. Health wise I should be thankful. I have had no evidence of disease for 14 months. I feel thankful, but not without reservations. This disease/treatment (yes, I’m still on chemo and other medications) has zapped my energy and makes me feel like I have the body of someone 25 to 30 years older than my actual chronological age. It’s wearing and frustrating. On the other hand, I’ve had some great experiences this past year. I’ve enjoyed good times and visits with family and friends. I’ve seen a few good movies and read some terrific books. I’ve been trying to think longer term, but am currently stuck in somewhat of a physical and mental rut. One doctor this year said I was being too hard on myself. Her intensions were good, but it angered me (you probably had to be there) and pushed me to an improved state. This past year has been better and easier than the year before. I’m committed to figuring out a longer term plan for myself next quarter and making 2009 better than 2008.
Enjoy the holidays. Thanks for checking in and take care of yourself.
"Routine" Checkup Report
I saw my chemotherapy and supportive care doctors earlier today. Based on my physical exam which included blood work and vital signs accompanied by a decent amount of poking, prodding, and listening, they say I'm in good shape. That makes it 13 months with no evidence of disease.
My chemo doctor does not want me to start back up on the Avastin. I'm okay with that for now. My next appointment will be scheduled for January and my next scan with be in the January / February time frame.
After talking to my supportive care doctor and her team about my current concerns, they gave me some tips and thoughts on how to transition from a full time cancer patient to a new healthier normal from a mental perspective. I'm taking their wisdom and experience under advisement... in plain English, that means I'm thinking about it.
Take care.
My chemo doctor does not want me to start back up on the Avastin. I'm okay with that for now. My next appointment will be scheduled for January and my next scan with be in the January / February time frame.
After talking to my supportive care doctor and her team about my current concerns, they gave me some tips and thoughts on how to transition from a full time cancer patient to a new healthier normal from a mental perspective. I'm taking their wisdom and experience under advisement... in plain English, that means I'm thinking about it.
Take care.
More Medical Marvels
Here’s something you don’t see everyday. A team of doctors and researchers used stem cells from a patient’s own bone marrow to grow and then implant the new wind pipe in the patient. The beauty of this is that the host body (in theory) will not reject the transplant due to it coming from the cells of the host. This was done in 2005 and the results so far have been successful. See URL…
http://www.msnbc.msn.com/id/27790019/
This ties into a political marvel as well. President-elect Barack Obama said early last week that as soon as he took office he would void the Bush presidential directive banning federal funding for stem cell research. I know many people view the issue (embryonic stem cells) behind the issue of stem cell research difficult, but I applaud our new president for his swift action on a prior executive decision that I personally found unconscionable. How many lives could have been saved if federal funding for stem cell research had been provided during the Bush years? We'll never know.
I’m at my cancer center today. It is in some ways my first “routine” checkup. I hope it stays routine and will provide an update within the next few days.
Thanks for checking in and take care of yourself.
http://www.msnbc.msn.com/id/27790019/
This ties into a political marvel as well. President-elect Barack Obama said early last week that as soon as he took office he would void the Bush presidential directive banning federal funding for stem cell research. I know many people view the issue (embryonic stem cells) behind the issue of stem cell research difficult, but I applaud our new president for his swift action on a prior executive decision that I personally found unconscionable. How many lives could have been saved if federal funding for stem cell research had been provided during the Bush years? We'll never know.
I’m at my cancer center today. It is in some ways my first “routine” checkup. I hope it stays routine and will provide an update within the next few days.
Thanks for checking in and take care of yourself.
Medical Marvels
Here’s something new in the field of treating head and neck cancer. The November 8 2008 issue of The Economist magazine had an article on the use of nano particles being used in human trials at three Texas medical centers for treating head and neck cancer. 80 trillion particles are injected into one’s blood stream and they find their way to one’s tumor leaving your healthy cells alone. They find your tumor based on the unique properties of the tumor’s blood capillaries. The nano particles are then heated and the tumor dies. The article goes on to say that in lab experiments on mice the tumors disappeared in 10 – 14 days without any noticeable side effects. Here’s a link to the article…
http://www.economist.com/science/displaystory.cfm?story_id=12551598
It all sounds so promising. I hope we hear more about this as the human trials unfold.
As for me, things are okay. No new health issues. To wrap up a loose end from an earlier post, my health insurance company contacted me today and agreed to pay for my ongoing Avastin chemo treatment. It took a great deal of work on my part (with help from a few family members – THANK YOU) to educate the insurance company about my case and their contractual commitment. On the negative side, the action of my insurance company two months ago disrupted my then ongoing chemo cycle. What this means to me is if my cancer does come back, I’ll never know if it was due to this disruption, but I’ll always wonder. On the positive side, they did the right thing by now agreeing to continue with the treatments. It will be interesting to see if my doctor wants to go back to my prior chemo regimen or continue with the current wait and see approach. I’ll take his lead on this.
That's it for today. Thanks for checking in and take care of yourself.
http://www.economist.com/science/displaystory.cfm?story_id=12551598
It all sounds so promising. I hope we hear more about this as the human trials unfold.
As for me, things are okay. No new health issues. To wrap up a loose end from an earlier post, my health insurance company contacted me today and agreed to pay for my ongoing Avastin chemo treatment. It took a great deal of work on my part (with help from a few family members – THANK YOU) to educate the insurance company about my case and their contractual commitment. On the negative side, the action of my insurance company two months ago disrupted my then ongoing chemo cycle. What this means to me is if my cancer does come back, I’ll never know if it was due to this disruption, but I’ll always wonder. On the positive side, they did the right thing by now agreeing to continue with the treatments. It will be interesting to see if my doctor wants to go back to my prior chemo regimen or continue with the current wait and see approach. I’ll take his lead on this.
That's it for today. Thanks for checking in and take care of yourself.
Fixing Myself - One minor ailment at a Time
I actually felt good today. Not just physically good, but also almost free of anxiety. Cancer brings on a lot of anxiety. Every ache and pain feels like a cancer recurrence. Two weeks ago I began the journey of trying to understand every physical issue that was bothering me. It’s a long list and I’m going to talk about each one. So, for those who don’t really want to read about someone else’s minor health problems, there is no need to read any further. But, for those of you that are in my situation or are helping someone like me, this may actually be instructive. In order of what has been bothering me physically, here goes. 1) A change in vision. 2) Lateral arm movement and shoulder pain. 3) Fatigue and always feeling cold. 4) An acute pain in my jaw that seems to happen about once every 4 months and lasts for 24 hours. The mind plays funny tricks on cancer patients. Being paranoid is not too strong of a term to describe it. Every one of these could be caused by some serious disease. I decided to attack each of these individually two weeks ago and to get some answers.
1) Vision – I had my eyes checked. My prescription glasses had not changed in decades. My eye doctor confirmed following my exam that my vision had deteriorated a little, but he saw no signs of eye cancer or eye nerve cancer. He prescribed a new pair of glasses in the 20/40 range. My anxiety about my eyes is now gone. I also have a new pair of glasses and my vision with glasses is 20/20.
2) Lateral arm movement and shoulder pain – I visited my family doctor. It was my first visit with him in over 3.5 years. I told him my concern about ALS (Lou Gehrig’s disease) or MS since it was attacking both arms and shoulders in a similar fashion. I asked to see a neurologist. He suggested an orthopedic surgeon. After listening to his reasoning, I agreed with him. I saw the orthopedic surgeon. He first did a full set of shoulder x-rays. Based on those findings he did an extensive MRI on each shoulder. We then discussed the results. He sees a slight tear in the tissue between my ball and socket in the shoulder on the right side and stiffness in both. Although he can’t rule out MS or ALS with this type exam, he felt strongly based on other patients that this was an orthopedic problem and not a neurological issue. He thinks a 10 minute procedure under light anesthetic, some shots into each shoulder and forcing a breakup in the stiffness via arm manipulation in each shoulder would do me wonders. I’m not ready for that, but I’m now anxiety free about this being a serious disease.
3) Fatigue and always feeling cold – I’m still on a daily chemo pill. My last chemo IV was August 18th (2.5 months ago). I really thought I should be feeling much better than I have been lately. While visiting with my family doctor he did some blood tests. He called and said one test showed a slow thyroid. My TSH (Thyroid Stimulating Hormone) was at 15. It should have been between .5 and 5. There is an inverse relationship between the count and a hyper versus slow thyroid. The higher the count, the slower the thyroid. I looked up “slow thyroid” on Google. The first sentence in the first site I visited said the primary symptoms of a slow thyroid were fatigue and feeling cold. I began a thyroid replacement medicine yesterday. They say it could take a few weeks for it to kick in. But, I’m no longer anxious about these symptoms. This is a very plausible explanation. One other point on this issue. When I received radiation treatment in mid 2005, my radiologist said that the radiation could actually cause thyroid problems and possibly even thyroid cancer 20 years down the road. At the time, I understood the risks and went forward with the treatment plan.
4) An acute pain in my jaw – I visited a local ear, nose, and throat doctor referred to me by my family doctor. Although my care at MD Anderson is superb, I wanted a really fresh set of eyes on this and a few others facial pain issues. After listening to me describe my symptoms, he described TMJ. TMJ is basically a facial muscle pain that can bring on the exact pain I was feeling. It is caused by trauma to the jaw which could be the result of an accident or surgery. We also talked about a way to address chronic pain left over from my July 2006 surgery. It is a nerve blocker medicine. If this nerve blocker medicine works I could then begin reducing and maybe even eliminating some of the stronger pain medicines that I take daily. I began this new medicine today. It too will take a few weeks to figure out if it works. Again, with a plausible explanation for the acute pain, my anxiety level is far reduced.
Here are the lessons to take away from the above. Break the problem down, address each methodically, seek appropriate specialists, and be proactive. I can’t tell you that there is not something seriously wrong with me. But today, I feel like a real weight has been lifted off of me for the first time in over 3.5 years. I don’t know how long this optimism will last, but it is so very welcome. I’m looking forward to the physical results of these new drugs over the next few weeks.
I hope this was helpful. That’s it for now. Thanks for checking in and take care of yourself.
1) Vision – I had my eyes checked. My prescription glasses had not changed in decades. My eye doctor confirmed following my exam that my vision had deteriorated a little, but he saw no signs of eye cancer or eye nerve cancer. He prescribed a new pair of glasses in the 20/40 range. My anxiety about my eyes is now gone. I also have a new pair of glasses and my vision with glasses is 20/20.
2) Lateral arm movement and shoulder pain – I visited my family doctor. It was my first visit with him in over 3.5 years. I told him my concern about ALS (Lou Gehrig’s disease) or MS since it was attacking both arms and shoulders in a similar fashion. I asked to see a neurologist. He suggested an orthopedic surgeon. After listening to his reasoning, I agreed with him. I saw the orthopedic surgeon. He first did a full set of shoulder x-rays. Based on those findings he did an extensive MRI on each shoulder. We then discussed the results. He sees a slight tear in the tissue between my ball and socket in the shoulder on the right side and stiffness in both. Although he can’t rule out MS or ALS with this type exam, he felt strongly based on other patients that this was an orthopedic problem and not a neurological issue. He thinks a 10 minute procedure under light anesthetic, some shots into each shoulder and forcing a breakup in the stiffness via arm manipulation in each shoulder would do me wonders. I’m not ready for that, but I’m now anxiety free about this being a serious disease.
3) Fatigue and always feeling cold – I’m still on a daily chemo pill. My last chemo IV was August 18th (2.5 months ago). I really thought I should be feeling much better than I have been lately. While visiting with my family doctor he did some blood tests. He called and said one test showed a slow thyroid. My TSH (Thyroid Stimulating Hormone) was at 15. It should have been between .5 and 5. There is an inverse relationship between the count and a hyper versus slow thyroid. The higher the count, the slower the thyroid. I looked up “slow thyroid” on Google. The first sentence in the first site I visited said the primary symptoms of a slow thyroid were fatigue and feeling cold. I began a thyroid replacement medicine yesterday. They say it could take a few weeks for it to kick in. But, I’m no longer anxious about these symptoms. This is a very plausible explanation. One other point on this issue. When I received radiation treatment in mid 2005, my radiologist said that the radiation could actually cause thyroid problems and possibly even thyroid cancer 20 years down the road. At the time, I understood the risks and went forward with the treatment plan.
4) An acute pain in my jaw – I visited a local ear, nose, and throat doctor referred to me by my family doctor. Although my care at MD Anderson is superb, I wanted a really fresh set of eyes on this and a few others facial pain issues. After listening to me describe my symptoms, he described TMJ. TMJ is basically a facial muscle pain that can bring on the exact pain I was feeling. It is caused by trauma to the jaw which could be the result of an accident or surgery. We also talked about a way to address chronic pain left over from my July 2006 surgery. It is a nerve blocker medicine. If this nerve blocker medicine works I could then begin reducing and maybe even eliminating some of the stronger pain medicines that I take daily. I began this new medicine today. It too will take a few weeks to figure out if it works. Again, with a plausible explanation for the acute pain, my anxiety level is far reduced.
Here are the lessons to take away from the above. Break the problem down, address each methodically, seek appropriate specialists, and be proactive. I can’t tell you that there is not something seriously wrong with me. But today, I feel like a real weight has been lifted off of me for the first time in over 3.5 years. I don’t know how long this optimism will last, but it is so very welcome. I’m looking forward to the physical results of these new drugs over the next few weeks.
I hope this was helpful. That’s it for now. Thanks for checking in and take care of yourself.
Hi-tech brings families together
An interesting article appeared on the BBC website. I could not help agreeing. There is a perception that hi tech or computerized activities are solitary. They can be of course, but it does feel that we are coming full circle.
Before the technological media took a hold, families ate together, worked and lived close. Radio came along and families listened together. The same thing with TV. Again the perception is that this took something away from family communication etc, but sharing an activity can create a feeling of togetherness.
When I was a kid growing up in the 1960's, we used to watch TV as a family, we shared a telephone and would chat to callers before passing the handset on. We have of course moved towards solitary viewing, and mobile telephone have allow kids to have exclusive access to their friends with parents sometimes having little contact.
Perhaps, because humans are primarily social beings, the circle is now being completed, in using these mediums to return to closer links with family and friends, but when necessary this is by phone and connecting using online social networking sites such as Facebook. It has been interesting to watch this spreading quite rapidly from students to people now in retirement. When I joined Facebook about 18 months ago, I was in a minority in my age group, but I am now finding a larger and larger pool of computer literate friends online.
Fascinating really isn't it?
BBC: Hi-tech brings families together
Before the technological media took a hold, families ate together, worked and lived close. Radio came along and families listened together. The same thing with TV. Again the perception is that this took something away from family communication etc, but sharing an activity can create a feeling of togetherness.
When I was a kid growing up in the 1960's, we used to watch TV as a family, we shared a telephone and would chat to callers before passing the handset on. We have of course moved towards solitary viewing, and mobile telephone have allow kids to have exclusive access to their friends with parents sometimes having little contact.
Perhaps, because humans are primarily social beings, the circle is now being completed, in using these mediums to return to closer links with family and friends, but when necessary this is by phone and connecting using online social networking sites such as Facebook. It has been interesting to watch this spreading quite rapidly from students to people now in retirement. When I joined Facebook about 18 months ago, I was in a minority in my age group, but I am now finding a larger and larger pool of computer literate friends online.
Fascinating really isn't it?
BBC: Hi-tech brings families together
Twittering - been doing it all my life
Now twitter, this is more up my street! I tend to talk all the time, filling all gaps with a fair amount of whitter, so as you can imagine twitter is for me.
Like all new gadgets, it takes a while for it to filter through to friends and family, so when I signed up on the 5th September, I was searching frantically for someone to follow, or to follow me.
Ah phew, husband to the rescue, although that just gives him another way to ask if dinner is ready yet!
Still it is now catching on with friends and my followers are increasing. This may have something to do with the fact that I let slip that Stephen Fry no less is following me! I don't need to tell everyone that he is following me because I follow him do I?
The ability to feed Twitter updates to my Facebook, Plaxo, this blog, updating my status from my iPhone while sitting on a bus, train, beach, cafe, park, son's activities all really appeal to me. I have lost count of the the number of times over the years I have meant to write down all the funny things that kids say to me, well now I twitter it!
Take a look to the right of the page and you will see my twitters for the day. Follow me at: www.twitter.com/KarenAtLongNeck
Like all new gadgets, it takes a while for it to filter through to friends and family, so when I signed up on the 5th September, I was searching frantically for someone to follow, or to follow me.
Ah phew, husband to the rescue, although that just gives him another way to ask if dinner is ready yet!
Still it is now catching on with friends and my followers are increasing. This may have something to do with the fact that I let slip that Stephen Fry no less is following me! I don't need to tell everyone that he is following me because I follow him do I?
The ability to feed Twitter updates to my Facebook, Plaxo, this blog, updating my status from my iPhone while sitting on a bus, train, beach, cafe, park, son's activities all really appeal to me. I have lost count of the the number of times over the years I have meant to write down all the funny things that kids say to me, well now I twitter it!
Take a look to the right of the page and you will see my twitters for the day. Follow me at: www.twitter.com/KarenAtLongNeck
Opted out for a while
Well I started this blog, over a month ago, my intention was to write about my thoughts as I go about the activities of my home based mail order business and to mention the odd things that happen to make me laugh and cry bringing up my two boys. However the global financial markets rather overtook all my thoughts. I am not an economist so decided not to comment any further.
All I will say is 'What a horrible mess!' I just hope that we are not back where we were last month in the new year, having spent billions of our own money to bail the banks out. I will not be holding my breath!
All I will say is 'What a horrible mess!' I just hope that we are not back where we were last month in the new year, having spent billions of our own money to bail the banks out. I will not be holding my breath!
Scan Results
I’ll make this brief. The scan results for both my chest and head & neck showed no evidence of cancer. My next appointment will be in 4 to 6 weeks for a follow up. The last detectable cancer was removed from my body surgically on October 18 2007. That means I’m half way (1 year) through a period of “no evidence of disease.” If/when I hit the two year mark at this time next year without a recurrence, it will mean that I’m in remission. I think this is a great thing. But, as Gust Avrakotos (played by Philip Seymour Hoffman) in Charlie Wilson’s War said of the Zen master's statement, “we’ll see.” I’m just recently beginning to think longer term. More on this later as my thoughts and plans crystallize.
That’s it for now. Thanks for checking in and take care of yourself.
That’s it for now. Thanks for checking in and take care of yourself.
Scan Day is Over
Hi. Another day, another scan. Yesterday went well from a timing standpoint. I left the house at 5:45 AM and beat most of the downtown Houston traffic. I had my blood drawn at 6:45 AM, a chest x-ray at 6:55 AM, and CT scans of the chest and head & neck (H&N) at 8:00 AM. The scan ended at about 8:30 AM. I then checked in for my clinic visit with my oncologist. At 9:30 AM my vital signs were taken and at 11:00 AM I saw my doctor. The preliminary scan from my chest CT was negative for disease. By preliminary, this means my oncologist’s interpretation, but not the radiologist review and sign-off. My oncologist did not feel qualified to give me a preliminary interpretation on the H&N scan. With the scar tissue from all the surgeries, he wants to leave that review up to the professional, the radiologist. The physical exam was clean; he thought I looked great. Here’s my point. Although scan day is over, it will be a day or two or three until the scan results are in. I’m mildly apprehensive and will bide my time until the news from my scan results are communicated to me. When that happens, I’ll share them on this forum.
Regarding the insurance issue presented in my prior posting, my doctor readily agreed to write an email to my insurance company articulating why this drug regimen (Avastin), which my insurance company denied covering for future use, should be covered. He hopes to send me that email within the next few days. The more I research this issue, the more strongly I feel that what the insurance company did was a direct breach of contract. I plan on submitting my own research along with my doctor’s assessment to my insurance company next week. This is the last step in the appeals process before civil litigation can begin. Depending on my insurance company's response, I'm reluctantly prepared to head down that road. Barack Obama has mentioned a few times how he saw his mom fighting with her insurance company while she lay dying in bed of cancer. I now know how she felt. Fortunately, I’m in better health than she was when this dispute happened and therefore have the strength and resources to fight it. But, it does raise a lot of ethical questions about insurance companies, drug prices, and even how much in dollar terms one’s life is worth. Because, in the end, it is not really about right and wrong, it is all about the money. And, in these tough economic times, who isn’t looking at their bottom line.
That’s it for now. Thanks for checking in and take care of yourself.
Regarding the insurance issue presented in my prior posting, my doctor readily agreed to write an email to my insurance company articulating why this drug regimen (Avastin), which my insurance company denied covering for future use, should be covered. He hopes to send me that email within the next few days. The more I research this issue, the more strongly I feel that what the insurance company did was a direct breach of contract. I plan on submitting my own research along with my doctor’s assessment to my insurance company next week. This is the last step in the appeals process before civil litigation can begin. Depending on my insurance company's response, I'm reluctantly prepared to head down that road. Barack Obama has mentioned a few times how he saw his mom fighting with her insurance company while she lay dying in bed of cancer. I now know how she felt. Fortunately, I’m in better health than she was when this dispute happened and therefore have the strength and resources to fight it. But, it does raise a lot of ethical questions about insurance companies, drug prices, and even how much in dollar terms one’s life is worth. Because, in the end, it is not really about right and wrong, it is all about the money. And, in these tough economic times, who isn’t looking at their bottom line.
That’s it for now. Thanks for checking in and take care of yourself.
Scan Day and Insurance Issue Continued
It’s almost that time again. I get a new scan this coming Wednesday on 10/15/08. It will be a CT scan of the head and neck using contrast. I’ll also get blood work and a chest x-ray. My tests will be followed by a clinic visit with my oncologist (hopefully he’ll have some preliminary good news from my various tests) and then a visit with the Supportive Care unit. It’s going to be a very very long day. I have a few new ailments which are bugging me. My vision has changed and I have a bump on my finger. Without cancer, both of these would be totally trivial. A visit to an eye doctor and my family physician would more than likely alleviate any concern. But, with cancer, every ailment, no matter how remote or trivial, takes on a greater magnitude of anxiety.
Other than my tests and clinic visit, I’m going to try and enlist my oncologist’s support to help fight my insurance company. Although the insurance company did the right thing by paying for all past chemo treatments, they did the wrong thing by denying payment for future use of my most recent chemo regimen. Here’s the problem. Chemo drugs are approved by the FDA for specific cancers. The drug companies target the common cancers because a drug which helps fight lung cancer (215,000 new cases per year) for example will have more customers than for non-common cancers. “Common” cancers are defined by the American Cancer Society as cancers which have 35,000 or more new cases per year. There are 13 of them (see reference 1 below). Head and Neck (H&N) cancer is not one of the 13. Since H&N cancer is not high on the cancer hit list, the number of drugs actually approved for its treatment is limited. However, once a drug hits the market (i.e., it has been approved by the FDA), doctors have a fairly high degree of discretion in prescribing that drug to treat other types of disease. Many of the professional medical people with whom I talk believe that H&N cancer cells behave in a similar fashion to those of lung cancer cells. So, when they exhaust their use of cancer drugs approved for H&N cancers, they may turn to lung cancer drugs. This is considered off label drug use. Drug companies are not allowed by law to market drugs for off label use, but doctors are allowed to use them for off label use when they believe they are medically necessary. That is what my doctor did for me back in December of 2007. But, my insurance company decided unilaterally to put a policy in place on 7/15/08 that made the use of this particular drug, Avastin, no longer reimbursable for off label use. What this means is that someone who has never met me and has only a superficial knowledge of my case is denying payment for future treatment when the chief of Head and Neck Oncology at one of the best cancer hospitals in the world has determined that this drug is medically necessary to treat my disease. The insurance company knows that research and drug funding for H&N cancers are minuscule when compared to the common cancers and that proving that a cancer treatment is useful for a specific cancer is a very expensive proposition. So, since my insurance company’s unilateral decision may have an impact on my future treatment and literally my life, I’m going to take my case to my oncologist and see if he will assist me in helping the insurance company see this situation from my perspective. My insurance has been good to me up until this point and I’m not out to make a national issue out of this. But, remember, this could happen to you. You’ve worked many years, you’ve paid insurance during all those many years and one day your insurance company says… you’re not covered even though your health plan documents say you are and your highly qualified medical professionals say this is your best chance at survival. This is scary stuff folks and should be taken seriously. On top of all this, I don't want to waste my oncologist's time with my insurance issues. I would much rather see him curing cancer. If anyone out there has any tips for me in this situation, please post them or send them my way.
That’s it for today. I’ll let you all know the scan results as soon as they have been finalized. Thanks for checking in and take care of yourself.
Reference(s)
1. http://www.cancer.gov/cancertopics/commoncancers
Other than my tests and clinic visit, I’m going to try and enlist my oncologist’s support to help fight my insurance company. Although the insurance company did the right thing by paying for all past chemo treatments, they did the wrong thing by denying payment for future use of my most recent chemo regimen. Here’s the problem. Chemo drugs are approved by the FDA for specific cancers. The drug companies target the common cancers because a drug which helps fight lung cancer (215,000 new cases per year) for example will have more customers than for non-common cancers. “Common” cancers are defined by the American Cancer Society as cancers which have 35,000 or more new cases per year. There are 13 of them (see reference 1 below). Head and Neck (H&N) cancer is not one of the 13. Since H&N cancer is not high on the cancer hit list, the number of drugs actually approved for its treatment is limited. However, once a drug hits the market (i.e., it has been approved by the FDA), doctors have a fairly high degree of discretion in prescribing that drug to treat other types of disease. Many of the professional medical people with whom I talk believe that H&N cancer cells behave in a similar fashion to those of lung cancer cells. So, when they exhaust their use of cancer drugs approved for H&N cancers, they may turn to lung cancer drugs. This is considered off label drug use. Drug companies are not allowed by law to market drugs for off label use, but doctors are allowed to use them for off label use when they believe they are medically necessary. That is what my doctor did for me back in December of 2007. But, my insurance company decided unilaterally to put a policy in place on 7/15/08 that made the use of this particular drug, Avastin, no longer reimbursable for off label use. What this means is that someone who has never met me and has only a superficial knowledge of my case is denying payment for future treatment when the chief of Head and Neck Oncology at one of the best cancer hospitals in the world has determined that this drug is medically necessary to treat my disease. The insurance company knows that research and drug funding for H&N cancers are minuscule when compared to the common cancers and that proving that a cancer treatment is useful for a specific cancer is a very expensive proposition. So, since my insurance company’s unilateral decision may have an impact on my future treatment and literally my life, I’m going to take my case to my oncologist and see if he will assist me in helping the insurance company see this situation from my perspective. My insurance has been good to me up until this point and I’m not out to make a national issue out of this. But, remember, this could happen to you. You’ve worked many years, you’ve paid insurance during all those many years and one day your insurance company says… you’re not covered even though your health plan documents say you are and your highly qualified medical professionals say this is your best chance at survival. This is scary stuff folks and should be taken seriously. On top of all this, I don't want to waste my oncologist's time with my insurance issues. I would much rather see him curing cancer. If anyone out there has any tips for me in this situation, please post them or send them my way.
That’s it for today. I’ll let you all know the scan results as soon as they have been finalized. Thanks for checking in and take care of yourself.
Reference(s)
1. http://www.cancer.gov/cancertopics/commoncancers
Current Status and Insurance Issue
Hi. It has been awhile since my last post. Here’s what’s happening. I finished my Avastin chemo treatments on August 18 2008. That was my 11th and last treatment for this drug. My doctor had originally wanted to go with a 12th treatment on September 17 2008. Those plans changed when my health insurer decided they would not pay for it, the high cost of the treatment, and my doctor deciding that 11 was the lucky number. It’s actually a bit more complicated than this, but I felt okay with the outcome. I’m scheduled for my next scan on October 15 2008. I’m trying not on focus on that set of tests while hoping for the best and preparing for the worst.
I had a significant insurance issue that began 3 weeks ago. The issue is now resolved, mostly to my satisfaction, but it created a high degree of anxiety. Here it is in a nutshell. My insurance company paid for my first 9 Avastin chemo treatments. Before beginning these treatments, my doctors checked and said my insurance would cover them. I was always a bit bothered by how expense each treatment was. On 9/8/08 I received an Explanation of Benefits letter from my insurance company that excluded the Avastin drug that they had previously paid for 9 times. The treatment for the drug delivered on 7/16/08 (my 10th treatment) was not covered. Upon calling my insurance company, I was informed that they would not pay for my prior treatment on 8/18/08, nor any future treatments with this drug for my type of cancer. After carefully reading my 370 page health SUMMARY plan document (get it, 370 pages is the summary), I came to the conclusion that this treatment was definitely covered. It was a chemo treatment and an FDA approved drug. I called my insurance company and after a few discussions came to find out that they put a new internal policy in place on 7/15/08 (one day before my denied 7/16/08 treatment) that excluded coverage of this specific drug for off label use. They told me I could find it on their website under “Providers,” under “Policies,” and then searching for some obscure drug code. After a dozen phone calls, emails, faxes, etc. later, over a 2+ week timeframe, my insurance company decided to do the right thing and pay for my 10th and 11th treatments. I think they reached this decision based on paying for the first 9 treatments and not providing any notice as to a change in their internal policy. The power that they have to place a new policy into effect for a specific drug that is clearly inconsistent with the 370+ page summary plan document is downright scary… as if people don’t have enough to worry about these days. There were many restless nights filled with stress and high anxiety around this whole experience. The lesson learned for me in this is to confirm all expensive treatments in advance directly (and by that I mean directly and take names, dates, and notes) with my insurance company.
On a more positive note, I’m feeling relatively well, continuing to work on my speech by practicing talking in front of a mirror, trying to enjoy each day, and doing some projects around the house. If this upcoming scan is clean and then the scan after that is clean (January 2009), I will begin thinking longer term.
That’s it for today. Thanks for checking in and take care of yourself.
I had a significant insurance issue that began 3 weeks ago. The issue is now resolved, mostly to my satisfaction, but it created a high degree of anxiety. Here it is in a nutshell. My insurance company paid for my first 9 Avastin chemo treatments. Before beginning these treatments, my doctors checked and said my insurance would cover them. I was always a bit bothered by how expense each treatment was. On 9/8/08 I received an Explanation of Benefits letter from my insurance company that excluded the Avastin drug that they had previously paid for 9 times. The treatment for the drug delivered on 7/16/08 (my 10th treatment) was not covered. Upon calling my insurance company, I was informed that they would not pay for my prior treatment on 8/18/08, nor any future treatments with this drug for my type of cancer. After carefully reading my 370 page health SUMMARY plan document (get it, 370 pages is the summary), I came to the conclusion that this treatment was definitely covered. It was a chemo treatment and an FDA approved drug. I called my insurance company and after a few discussions came to find out that they put a new internal policy in place on 7/15/08 (one day before my denied 7/16/08 treatment) that excluded coverage of this specific drug for off label use. They told me I could find it on their website under “Providers,” under “Policies,” and then searching for some obscure drug code. After a dozen phone calls, emails, faxes, etc. later, over a 2+ week timeframe, my insurance company decided to do the right thing and pay for my 10th and 11th treatments. I think they reached this decision based on paying for the first 9 treatments and not providing any notice as to a change in their internal policy. The power that they have to place a new policy into effect for a specific drug that is clearly inconsistent with the 370+ page summary plan document is downright scary… as if people don’t have enough to worry about these days. There were many restless nights filled with stress and high anxiety around this whole experience. The lesson learned for me in this is to confirm all expensive treatments in advance directly (and by that I mean directly and take names, dates, and notes) with my insurance company.
On a more positive note, I’m feeling relatively well, continuing to work on my speech by practicing talking in front of a mirror, trying to enjoy each day, and doing some projects around the house. If this upcoming scan is clean and then the scan after that is clean (January 2009), I will begin thinking longer term.
That’s it for today. Thanks for checking in and take care of yourself.
Genius!
My blog has been classified as having a readability level of Genius! How did that happen? I guess I now have a lot to live up to.....
Cobie Smulders picture gallery
Jacoba Fransisca Maria "Cobie" Smulders is a famous television actress and former international model.
Cobie Smulders was born to a Dutch father and a British mother on 3rd of april 1982.
She was very eager to become an actress and her first role was as a guest in the Showtime sci-fi series Jeremiah. But Her first permanent series role was in the short-lived ABC series Veritas: The Quest.
Name: Cobie Smulders
Birth Date: 03-04-1982
Birth Place: Vancouver, British Columbia, Canada
Cobie Smulders was born to a Dutch father and a British mother on 3rd of april 1982.
She was very eager to become an actress and her first role was as a guest in the Showtime sci-fi series Jeremiah. But Her first permanent series role was in the short-lived ABC series Veritas: The Quest.
Name: Cobie Smulders
Birth Date: 03-04-1982
Birth Place: Vancouver, British Columbia, Canada
Money as Debt
Kevin and I, this morning over breakfast, were discussing the current banking situation. In our lifetime, certainly in our perception, it is extraordinary for banks to be other than safe. We found ourselves asking questions we did not have the answer to, and it made me realize that so many of us do not really understand fully our banking systems or even realize that we don't.
Shortly after our conversation I found this on a blog that I read and felt that I should share it. It is a 45 minute video so I would understand anyone feeling that they do not have time to watch, but I beg you to find the time. While you may not have asked the questions yourself, be sure that the information in this video will probably surprise.
I wonder if when we talk of the end of the world, what we really mean is the end of the world as we know it. I have often seen the year 2012 predicted as an apocalypse or a new beginning. Is this perhaps a reference to a new world wide monetary system needing to be put in place? Would it take that long? It would certainly lead to a transformation of the world as we know it.
Money as Debt Part 1 of 5
Money as Debt Part 2 of 5
Money as Debt Part 3 of 5
Money as Debt Part 4 of 5
Money as Debt Part 5 of 5
Source: collaboratingwithfate.blogspot.com/2008/09/credit-circulation-coins-collusion.html
Shortly after our conversation I found this on a blog that I read and felt that I should share it. It is a 45 minute video so I would understand anyone feeling that they do not have time to watch, but I beg you to find the time. While you may not have asked the questions yourself, be sure that the information in this video will probably surprise.
I wonder if when we talk of the end of the world, what we really mean is the end of the world as we know it. I have often seen the year 2012 predicted as an apocalypse or a new beginning. Is this perhaps a reference to a new world wide monetary system needing to be put in place? Would it take that long? It would certainly lead to a transformation of the world as we know it.
Money as Debt Part 1 of 5
Money as Debt Part 2 of 5
Money as Debt Part 3 of 5
Money as Debt Part 4 of 5
Money as Debt Part 5 of 5
Source: collaboratingwithfate.blogspot.com/2008/09/credit-circulation-coins-collusion.html
Courteney Cox wallpaper gallery
Courteney Bass Cox is also known as Courteney Cox Arquette, is an American actress, former model and film producer. Courteney Cox is known for her role as Monica Geller in the famous TV sitcom Friends and as Lucy Spiller, in the television drama "Dirt".
Cox was born in a wealthy family in Birmingham, Alabama. Her parents were Courteney and the late Richard Lewis Cox. Cox has two older sisters, Virginia McFerrin and Dottie Pickett, an older brother,Richard,Jr. on june 12, 1999,Cox married David Arquette and On June 13,2004, she gave birth to their first child, daughter Coco Riley Arquette.
Name: Courteney Bass Cox
Birth Date: 15-06-1964
Birth Place: Birmingham, Alabama United States
Spouse(s): David Arquette (1999-present)
Cox was born in a wealthy family in Birmingham, Alabama. Her parents were Courteney and the late Richard Lewis Cox. Cox has two older sisters, Virginia McFerrin and Dottie Pickett, an older brother,Richard,Jr. on june 12, 1999,Cox married David Arquette and On June 13,2004, she gave birth to their first child, daughter Coco Riley Arquette.
Name: Courteney Bass Cox
Birth Date: 15-06-1964
Birth Place: Birmingham, Alabama United States
Spouse(s): David Arquette (1999-present)
What a blow!
Oh dear the times that we live in. My sympathies go to a friend who married last Saturday. I've seen the photos and they clearly had a fabulous time. However they have had to contend with the cancellation of their honeymoon due to the airline bankruptcy. To make matters worse, Ian works for Lehman Bros who also filed for bankruptcy today.
Story at BBC.co.uk
Ian and Lucy Neville, wishing you all the best for the future! With a start like this, let us hope that, it can only get better!
Is My Friend Mad?
This is worth sharing. I cannot say I would have the nerve to leap out of an aeroplane with my faith in only some nylon and a lot of cables, but good on you Kevin Marshall and friends!
Here's hoping that lots of people will sponsor you and your friends, in aid of Centrepoint.
Here's hoping that lots of people will sponsor you and your friends, in aid of Centrepoint.
The Chore of Food Shopping
Those who know me well know what a 'computer nerd' I am. Virtually all I am involved in can be linked back to my PC. Well yesterday's chore was to get the weekly food shopping. We have moved house recently and the usual boring task has been made acutely more tiresome now that I find myself using different supermarkets, with different layouts. I never quite got off my PC and went!
I have tried online shopping, comparing the big four, Ocado, Sainsbury's, Tesco and Asda, I am never quite sure I get the best deals, but I hop between them.
Kevin gave me this to look at yesterday, mySupermarket.co.uk, and it does address a lot of the problems of online shopping. The ability to compare prices across the various stores is really useful, the ability to change shop if one of the others is proving cheaper this week. Further it is possible to make substitutes within each shop on price and health properties!
Yes, this amuses me. Well....I have not placed my first order yet, but have imported my favourites and had a bit of a play. Will be using it soon........
I have tried online shopping, comparing the big four, Ocado, Sainsbury's, Tesco and Asda, I am never quite sure I get the best deals, but I hop between them.
Kevin gave me this to look at yesterday, mySupermarket.co.uk, and it does address a lot of the problems of online shopping. The ability to compare prices across the various stores is really useful, the ability to change shop if one of the others is proving cheaper this week. Further it is possible to make substitutes within each shop on price and health properties!
Yes, this amuses me. Well....I have not placed my first order yet, but have imported my favourites and had a bit of a play. Will be using it soon........
princess Diana picture gallery
Diana, Princess of Wales, was the first wife of Charles, Prince of Wales. Diana became a public figure from the announcement of her engagement to Prince Charles. Diana remained the focus of near-constant media scrutiny in the United Kingdom and around the world up to and during her marriage.
After her divorce with prince williams, She publicly dated Hasnat Khan, a heart surgeon from Pakistan. Hasnat Khan was called "the love of her life". After two years Khan ended the relationship due to cultural differences. She soon after began her relationship with Dodi Al-Fayed. On 31 August 1997, Diana died after a car crash in the Pont de l'Alma road tunnel in Paris along with Dodi Al-Fayed.
Name: Diana Frances Spencer
Birth Date: 01-07-1961
Birth Place: Park House, Sandringham, Norfolk
Father: John Spencer, 8th Earl Spencer
Mother: Frances Burke Roche
Spouse: Charles, Prince of Wales(1981-1996)
sons: Prince William of Wales, Prince Henry of Wales
Died On: 31-08-1997
Place of death: Pont de l'Alma, Paris, France
Burial Place: Althorp, Northamptonshire
Titles: Diana, Princess of Wales, HRH The Princess of Wales, The Lady Diana Spencer, The Hon Diana Spencer
After her divorce with prince williams, She publicly dated Hasnat Khan, a heart surgeon from Pakistan. Hasnat Khan was called "the love of her life". After two years Khan ended the relationship due to cultural differences. She soon after began her relationship with Dodi Al-Fayed. On 31 August 1997, Diana died after a car crash in the Pont de l'Alma road tunnel in Paris along with Dodi Al-Fayed.
Name: Diana Frances Spencer
Birth Date: 01-07-1961
Birth Place: Park House, Sandringham, Norfolk
Father: John Spencer, 8th Earl Spencer
Mother: Frances Burke Roche
Spouse: Charles, Prince of Wales(1981-1996)
sons: Prince William of Wales, Prince Henry of Wales
Died On: 31-08-1997
Place of death: Pont de l'Alma, Paris, France
Burial Place: Althorp, Northamptonshire
Titles: Diana, Princess of Wales, HRH The Princess of Wales, The Lady Diana Spencer, The Hon Diana Spencer
Diana Ross picture gallery
Diana Ross is an American twelve-time Grammy and Oscar-nominated singer, record producer and actress, whose musical repertoire spans R&B, soul, pop, disco and jazz. During the 1970s and through the mid 1980s, Ross was the most successful female artist of the rock era, crossing over into film, television and Broadway.
In 1976, Billboard magazine named her the "Female Entertainer of the Century." The Guinness Book Of World Records" declared Diana Ross as the most successful female music artist of the 20th century with a record total of eighteen American number-one singles.
Name: Diane Ernestine Earle Ross
Birth Date: 26-03-1944
Birth Place: Detroit, Michigan, United States
Profession: Singer, record producer, actress
Genre: R&B, soul, pop, disco, jazz
Years active: 1959–present
In 1976, Billboard magazine named her the "Female Entertainer of the Century." The Guinness Book Of World Records" declared Diana Ross as the most successful female music artist of the 20th century with a record total of eighteen American number-one singles.
Name: Diane Ernestine Earle Ross
Birth Date: 26-03-1944
Birth Place: Detroit, Michigan, United States
Profession: Singer, record producer, actress
Genre: R&B, soul, pop, disco, jazz
Years active: 1959–present
Daniela Pestova wallpaper gallery
Daniela Peštová is a Czech model. She was born in Teplice, Czechoslovakia on 14th october 1970. She is one of the most popular model and has appeared on the covers of GQ, Marie Claire, Cosmopolitan, Glamour and ELLE.
Peštová married Tomasso Buti in 1995, but the couple divorced in 1998. The couple had a son Yannick Fausto, who was born in 1996. She has also a daughter, Ella, born on 21july 2002, with her present partner, Slovak singer Pavol Habera.
Name: Daniela Peštová
Birth Date: 14-10-1970
Birth Place: Teplice, Czechoslovakia
Height: 5 ft 11 in (1.80 m)
Eye color: Blue
Hair color: Blonde
Spouse: Tomasso Buti (1995-1998)
Peštová married Tomasso Buti in 1995, but the couple divorced in 1998. The couple had a son Yannick Fausto, who was born in 1996. She has also a daughter, Ella, born on 21july 2002, with her present partner, Slovak singer Pavol Habera.
Name: Daniela Peštová
Birth Date: 14-10-1970
Birth Place: Teplice, Czechoslovakia
Height: 5 ft 11 in (1.80 m)
Eye color: Blue
Hair color: Blonde
Spouse: Tomasso Buti (1995-1998)
Exploring Facebook Pages
We are still working on the main company website. At present the website has a manual order form. We are writing the new ecommerce section in Zen Cart, but it is taking time. In the meantime we have added a page in Facebook and set up a temporary shop, for the stamps alone.
Facebook as a place to introduce our company is a new venture. I am quite interested to look at the resulting statistics showing how quickly and far and wide our readership becomes.
http://www.new.facebook.com/pages/Long-Neck/10119857031
Facebook as a place to introduce our company is a new venture. I am quite interested to look at the resulting statistics showing how quickly and far and wide our readership becomes.
http://www.new.facebook.com/pages/Long-Neck/10119857031
Emmanuelle Vaugier picture gallery
Emmanuelle Vaugier is a Canadian film and television actress. She acted in television series like Smallville, Two and a Half Men and CSI: New York. She has acted in feature films like Secondhand Lions and 40 Days and 40 Nights.
Vaugier was born in French-speaking French Canadian Catholic household in Vancouver, British Columbia. Emmanuelle Vaugier was placed on #31 spot on Maxim magazine annual Hot 100 list in 2006.
Name: Emmanuelle Vaugier
Birth Date: 23-06-1976
Birth Place: Vancouver, British Columbia, Canada
Vaugier was born in French-speaking French Canadian Catholic household in Vancouver, British Columbia. Emmanuelle Vaugier was placed on #31 spot on Maxim magazine annual Hot 100 list in 2006.
Name: Emmanuelle Vaugier
Birth Date: 23-06-1976
Birth Place: Vancouver, British Columbia, Canada
Emmy Rossum wallpaper gallery
Emmanuelle Grey Rossum, famously known as Emmy Rossum, is a Golden Globe-nominated hollywood actress and American singer-songwriter. She has acted in leading roles in the films like The Day After Tomorrow, Poseidon and The Phantom of the Opera.
Rossum was born in a jewish family in New York City, New York, was an only child of Cheryl, a corporate photographer and a banker. she was raised by her mother after her parents divorced. She won her Best Young Actress award in 2004 Critic's Choice Awards. Rossum is currently dating record producer Justin Siegel.
Name: Emmanuelle Grey Rossum
BIRTH Date: 12-09-1986
Birth Place: New York City, New York
Other name: Emmy Grey
Profession: Actress, singer
Rossum was born in a jewish family in New York City, New York, was an only child of Cheryl, a corporate photographer and a banker. she was raised by her mother after her parents divorced. She won her Best Young Actress award in 2004 Critic's Choice Awards. Rossum is currently dating record producer Justin Siegel.
Name: Emmanuelle Grey Rossum
BIRTH Date: 12-09-1986
Birth Place: New York City, New York
Other name: Emmy Grey
Profession: Actress, singer
Victoria Silvstedt wallpaper gallery
Karen Victoria Silvstedt is a Swedish supermodel and former professional skier. She was born on September 19, 1974,in Skellefteå, Sweden. Silvstedt was the first runner-up in Miss Sweden bowing to Johanna Lind, and went on to represent Sweden in the Miss World contest in South Africa, reaching the final eight contestants.
Silvstedt married WCBS-TV news anchor Chris Wragge in June 2000 at Tuxedo Park Country Club in New York. In June 2006, Silvstedt and Wragge separated and are divorcing.
Name: Victoria Silvstedt
Birth Date: 19-09-1974
Birth Place: Skellefteå, Sweden
Height: 1.78 m (5 ft 10 in)
Silvstedt married WCBS-TV news anchor Chris Wragge in June 2000 at Tuxedo Park Country Club in New York. In June 2006, Silvstedt and Wragge separated and are divorcing.
Name: Victoria Silvstedt
Birth Date: 19-09-1974
Birth Place: Skellefteå, Sweden
Height: 1.78 m (5 ft 10 in)
Subscribe to:
Posts (Atom)