Saturday, February 26, 2011

One Small Step ......

I am currently lobbying government to have the drug Afinitor included in our province's spring budget so that kidney cancer patient's can then access the drug more readily, without having to worry about the massive financial burden it currently places on those who need it most.

You may ask, well what can "one" person do to make this happen?  I would reply by saying "one small step" so I jumped in, feet first and thought I would give it my best try.  I have moved a few mountains in the past within our health care system because I do want to see change happen in areas that need improvement. 

Each of us has an obligation to do whatever we can to improve health care in our provinces, states and countries. 
No point in thinking about what change could "I" have made, without taking that first step towards making it.

I have very high hopes that my initial request for the Afinitor funding  WILL indeed happen!  I'll keep you posted.

Thursday, February 24, 2011

Cancer Website

Thought I would post the website of the World Cancer Congress for your reference. I find it interesting or sad to note that Canada has never hosted one of these conferences.   Scroll down the page a little to access more information on cancer treatments discussed at the world conference in 2010.  You can click the icon for a slideshow presentation.




Tuesday, February 22, 2011

Health Care Accountability

If anyone reading today's post has NEVER encountered a problem within the health care system, congratulations!

I am not trying to be coy here with my suggestion that things do happen within our health care systems, but the reality is, THEY DO!  The more time you spend in the system as a patient, the more problems you will encounter.  The same is true for caregivers like myself who accompany these patients to hospitals and who know from first hand experiences that costly mistakes are all too common, putting patients lives in the balance.

I guess for someone who is exposed to hospitals and health care for a short time, it's not at the top of your list that you should be diligent in your care.  After several years though, you do see things from a different perspective.  My husband has been in our health care system for 10 years now....that's alot of hospital stays, doctor visits, testing and stress.  Count your blessings if you haven't been there that long. 

Throughout those 10 years, he has received some excellent care, but it only takes one bad experience to put you on high aleart and over this period of time, there have been a few.  At the beginning of his health scare, we didn't even give a thought to questioning anything that health care providers told us, we didn't have the slightest thought that mistakes could happen and to be honest, I never imagined that me as caregiver, could ever encounter so many errors along his journey.  So, my advice here is for everyone to be diligent about your health care and be asserive if you think something just isn't right.  Don't be afraid to speak up!

One BIG problem that I continuously hear from just about every cancer patient is "I had tests earlier, but I was told it was nothing and sent home"!   Yes, we have heard that as well.  This leads me to wonder just who is reading these diagnostic tests, are the tests completel as thoroughly as they should be, are patients given the proper tests right from the start (saving money shouwl not be the issues, because if the proper diagnosis isn't made, then the health care costs become enormous) and why in the heck are there so many errors made by not discovering the cancer BEFORE it becomes full blown?  I know sometimes it may be impossible to detect certain cancers, but in our situation my husband was checked and rechecked for several years prior to his terminal diagnosis, only to discover that when he became physically sick, they finally did the right test and determined the cancer was back with a vengeance.  Early detection is vital for cancer patients - therefore accurate testing and diagnostic reporting is essential from the Get-Go !

Any mistakes that are found within our health care sectors should be acted upon immediately!  Everyone involved should be made aware of these errors and accountability should and must be enacted ---- accountability so that these errors do not ever happen again and it should be a learning curve for our health care professionals to improve the care of all patients. 

So...here's another huge mistake that I recently encountered while my husband was in emergency, too sick to understand what was going on around him.  A nurse rushes into his cubicle with IV bag in hand, ready to give my husband his antibiotics.  She casually says out loud "Here I am Mr. X, with your meds" -  the problem was that my husband was "Mr. Y and NOT Mr. X"  !!!!!     I immediately recognized the nurses mistake and told her the correct name.  She was so apologetic for her lack of professionalism in NOT checking his wrist band to ensure she indeed had the correct patient.  If I had not been there, who knows what meds my husband would have received that day, and no doubt if it would have caused a fatal outcome, I would have gotten a call to say "Sorry, but your husband passed away due to cancer"!!!!

I could ramble on with a few other very serious scenerios, but just the above one should be enough to make you realize that you must become very cognizant to the fact that mistakes can and do happen within our health care system.  It is up to us to bring it to the attention of those in authority so that nothing like that happens ever again. 

We are all human, and misjudgements happen you might say, but when someone's life is in the balance, those responsible should ensure that these wrongdoings DO NOT ever happen!

If you have ever had a problem within your health care system, why don't you share it with us via the comments section or post it directly on the chat forum.





Sunday, February 20, 2011

Exorbitant Costs of Cancer

We all know that cancer is expensive!  If you are a cancer patient, you face those high financial costs.  Today I'm looking at the high costs of cancer as it relates individually to cancer patients.

Many of you may have excellent health insurance coverage that will cover most of your cancer medications - if so, then you are very fortunate indeed.  On the other hand, if you do not have insurance, your financial situation could be affected tremendously because of your cancer diagnosis.

Treatments for cancer can be very expensive and many of these treatments are NOT covered by government funding  Even if they are, there are "specialy authorizations" as I discussed in an earlier post that will probably greatly reduce a cancer patient's access to that drug. Then there's the barrier of your TYPE of cancer - some cancer treatment funding is easier to obtain than others.  Hey, you don't choose your "type" of cancer do you - so why are there stipulations on coverage for different types?

Not only will you encouter financial problems with your cancer treatment costs, but when you have cancer, you will also need other prescription drugs and these costs can accummulate over time and place excessive strain on your finances.  Prescriptions for blood pressure, acid reflux, fluid retention, steroid replacement, high glucose levels are examples of some of these additional costs, just to name a few.

Then you will have travel costs - travel to and from your hospital for appointments, testing and hospital stays - ambulatory costs may be included in this area.  Many patients will have to stay close to hospitals if their cancer treatments are on-going so now you can add your accommodation costs to the list.  Not all cancer hospitals have hostels (which also will cost you) or other cancer accommodation at the ready, so unless you are fortunate enough to have family or friends living close by your cancer hospital, then now you have hotel expenditures.  Of coure you will need to eat and it's important to have nutritous foods while you are receiving treatments.  If your travel is just for a day to see your doctor or for testing, then you can always pack a lunch, but for most patients, their travel is more indepth than that and food purchases cannot be avoided.  Next, there is your fuel costs to factor in as well.  You will have accidental costs for those unexpected purchases and oh, did I mention that of course you will need to be accompanied by someone, so now the costs will be even higher.  Your financial situation will be affected through your employment, especially if you do not have the proper insurance to compensate you for long-term absences from work.  Maybe you are on a fixed income, if so then the additional costs will impact your financial situation dramatically.

Many will question how cancer costs will differ from other medical costs?  Well, cancer is ongoing - it's not an illness that you will have for one week or one month or maybe not even for one year - for us now it's been five years (I say that very thankfully!!!) but in reality cancer costs continue for quite sometime and although we are blessed that in my husband's situation he is still with us, our costs also continue. 

I have just read another great post by a cancer patient/friend who writes the blog Ron's Road 2 Recovery which also confirms what I have said in greater detail about the enormous costs that cancer places on all of us who travel the journey. 


I know personally of several cancer patients who are struggling just to live day to day.  Hard to believe, isn't it, but it is very real.  Everytime I see a television commercial requesting funds for cancer research, I wonder why there is not more funds being filtered through the system for those cancer patients who need it most.  Cancer patients struggle each day to live because of their cancer, but many are also struggling to live because of the high financial burden cancer has brought into their lives.

Here's a link to an interesing article I found on the web with regards to the high cost of cancer on patients and their families    http://www.elmiraindependent.com/columns/article/88178

If you are a patient who is struggling financially, check out your local government agencies for advice and direction.  Here's a link for those in the US http://www.cancer.net/patient/All+About+Cancer/Managing+the+Cost+of+Cancer+Care/Financial+Resources

If your family is encountering financial difficulties, please post a short message on the chat forum above to let others know the difficulties that you are encountering.  Please remain anonymous, but your comments will allow others to realize the burdens you bear everyday.

As I watched a couple who both have cancer stand at a restaurant counter recently ordering one slice of toast and one cup of coffee between them, it made the high costs that cancer brings all too real!  If you know of an individual who may be struggling with cancer financailly and you are in a position to lend a hand, why not?   It will mean the world to them, and you inturn will feel wonderful for your act of kindess.



Friday, February 18, 2011

Chemerical - Have You Seen It?

While scrolling down the televison channels the other night, I came across a very interesting documentary entitled
     

(you can click on the above link to read more)

It provides detailed information on all of the toxins aka "poisons" we have in our home, and we ALL do have them, sometimes without realizing it.  They are in our everyday cleaning products such as dish detergents, personal hygiene items, make-ups as well as components of these toxins can be found within the baby care sections.

Needless to say, it was a real eye-opener to watch this and then realize just how much of it I have right here at home.  Toxins that I use everyday without even giving it a second thought as to how they are harming our family. 

One such example would be my dish detergent.  I, like you, always try to get my dishes squeaky clean, but in the process of using a high volumn of suds, that also results in some of these toxins being left on my dishes. Next time someone uses them, these toxins are then passed along in the foods served on them.

Here is another link to watch a short excerpt of the show

http://chemicalnation.com/content/watch





Wednesday, February 16, 2011

Scrap The " Line " Stipulation

For many cancer patients who need life-saving treatments, the fact is that access to them can be "NIL".   The main reason is due to the high costs of these drugs.  Spending $7000, $12000, and even more a month is unimaginable if you don't have health insurance, and even if you do, then there are other obstacles you will encounter before you can get approval.   Even though your state or province may indicate that coverage of a particular cancer drug is available - it's still not that black or white whether you will be on the receiving end.
Why?  You have to read the fine print! Many of these government drug approvals have "special authorizations" attached.  This means that a particular treatment will only be covered based upon whether it is the patient's first-line or second-line treatment.  For instance - one of the leading drugs for kidney cancer is Sutent or Sorafenib - if you are a patient recently diagnosed with RCC your doctor may decide on giving you this particular drug as your "First-Line or First-Time Treatment".  Therefore, if this is one of the drugs that has been approved under governmental funding with a stipulation of first-line, then you would be approved for coverage.  If on the other hand, you have previously been on two or three other types of treatments such as Interferon, or Nexavar "before" being prescribed the Sutent, then government's approval will be denied since you would not meet the "first-line" stipulation.  That is government's way of putting road blocks to funding of these cancer drugs.  Sure, it all sounds well and good when you hear finance ministers announce in their annual budgets that they have approved coverage for certain drugs, but once you read through the fine print the picture is not as rosy as it initially appears.

The irony about all of this, is that cancer patients who need these life-saving treatments are unable to access them, and to me that is just plain cruel and unacceptable. It is the same as someone standing onshore with a life perserver, watching you struggle to reach shore and not doing a damn thing about it.

Cancer patients who have struggled to live and have battled all the obstacles that come their way, should NEVER be denied access to any treatment just because they don't meet the criteria such as first-line or second-line.  Do those in authority who make these rules and regulations understand that the reason these patients are here is due to the fact that they have been on other cancer drugs and have beaten such great odds stacked against them?  Why then, just when there is longevity offered in a newer treatment, will they be denied?  It makes absolutely no sense at all, other than the cost saving aspect for governments.

What about the scenario when "Sutent" has been approved as a first-line treatment:  if a patient had initially been on Sutent, then Interferon, then a third cancer drug, followed by a 4th type of cancer treatment and then returns to Sutent????  Do you think that would be considered  first-line? 
 Ah.....wonder what our government officials would say???





Monday, February 14, 2011

Happy Valentine's Day


Today is a special day indeed, to share and celebrate those whom you love and those whom you are blessed to have in your life.

Cherish each moment!


Happy Valentine's Day





         What Cancer Cannot Do

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.






Sunday, February 13, 2011

Sunday Medley




“The things which are impossible with men
 are possible with God.”
 (Luke 18:27)

Thursday, February 10, 2011

Why A Blood Test?

Ever wondered why you will need to have a blood test before your chemotherapy treatments?



White blood cells

There are a few reasons, but one in particular is to check your white count levels...if they are down,  then you are more susceptible to getting an infection.  If you were to receive chemo with a low white cell count, then your immune system would be even more compromised and an infection would be at the forefront.  That is something you will want to avoid at all costs, because when one occurs, it's very likely you will be admitted to hospital until it clears.


Check out this link for more information  

 http://www.caring.com/articles/chemotherapy-blood-test-results


If you are a cancer patient on oral meds, then you will also need to have a blood test done on a routine basis, probably every couple of weeks or monthly to ensure your blood levels are within the norm.




In My Opinion - Get a "Second" Opinion

I've said it before and I'll say it again:

Always get a second opinion when your cancer diagnosis does not look favourable!!!

NONSENSE - you might say!  Well it's your life, but my husband and I know from a personal point of view that had we not gotten a second opinion he would have passed away at least three years ago.  You might think that the fact we got that second opinion and he's still here, was just sheer luck, but not so.  The second opinion has gotten my husband through the most difficult times when his CT or MRI reports were devastating and it's happened more than once. 

I find this is very sad actually - when you think that the medical community who we all put such great trust in, has such diverse opinions on a patient's life after reading his/her diagnostic reports.  The key word here is READING.  OK, let me go back a step to clarify.

Did you know that your oncologist or family doctor might not even have taken a look at your CT or MRI report themselves?  Yes, that's right!  Now I've gotten your attention. These reports are viewed by the hospital's radiologist and tumors are measured and the report is written compared to your previous one.  Ah...but the fact is, what if the radiologist fails to measure the results accurately - do you think that could ever happen?  Well, if a nurse can proceed to hang a bag of IV without even asking the patient's name (only to find it's not the correct patient!!!), yes, you can be &$%#@# (pardon my French) sure that the person who initially writes up a diagnostic report can also make errors.  After all, we are all only human?  Hey, right - we are talking about the LIFE here of a patient and that is something that should not be taken lightly at any given time.

Maybe your oncologist does read your reports, but I'm planting this seed for you to remember just in case you ever do receive that bad medical diagnosis and something in your gut keeps saying "there must be a mistake because I'm feeling so great?"   It is your right as a patient to seek another medical opinion if you think you should.  If you present doctor flinches at the mere thought of you even suggesting you would like a second report, then that's not professional at all.

 

Go seek out an oncologist who "specializes" in your type of cancer  if and when you are ever in doubt - do your homework - that is my best advice.

Oh, and by the way, are you certain just what TYPE of cancer you have???  That's a topic for another day.




Wednesday, February 09, 2011

We "ALL" Have Cancer


Cancer Cell

I'm sure you have often heard the phrase "we all have cancer".

After watching an episode of the Dr. Oz show this past week, here is a little more scientific data to confirm this statement is true.  A leading cancer expert confirms that we all have microscopic cancers but what matters, is how NOT to trigger them.

Very interesting indeed, so I trust you will take a few minutes to watch the following video. Don't forget to first turn off the playlist on the right!



Tuesday, February 08, 2011

From Three Months to Five Years!!!



Today's post is one of the most inspiring stories you will ever read about a cancer patient.  It's about my husband and how he truly is that miracle man of whom I speak.

Today is his birthday!!!  Everyone's birthday is a special day, but today is not only special at our house, but also it's inspiring to say the least.  My husband celebrates his fifth birthday anniversary after he was initially given only three months left to live back in 2006.  Yes, that's right, it's been five years - wow, truly amazing. Now that is something to celebrate!!!  He is feeling great and will definitely be celebrating with family and friends later this evening.

Most importantly though, for other cancer patients who may be reading this today and who also may have received a devastating cancer diagonsis, don't despair but keep your faith and keep inspired by just knowing about my husband's cancer journey.  We seem to always hear the bad news about cancer, but not the good news stories.

Believe me, we have heard the good, the bad and the ugly and we know that you can't just give up. So hang in there and stay positive and be inspired!




Monday, February 07, 2011

Information Session One Month From Today

Thought I would pass along a link where you can access more information on the following topic:

Living Well With Kidney Cancer - from patient to survivor
Click the above link for more infor


Details about this presentation are posted on the Kidney Cancer Canada website at http://www.kidneycancercanada.org/

Don't forget to mark your calendar today!!!
 



Sunday, February 06, 2011

Sunday Medley

Wednesday, February 02, 2011

Storm Alert

Everytime I have listened to any news reports today, it seems the top news story here is all about the BIG snowstorm that is sweeping across the US and Canada, then heading east towards the Atlantic.  It's been referred to as any of the following:

Winter Wallop

Storm of the Century

Mega Snowstorm

Strongest Storm of the Season

Massive Blizzard


Yes indeed, it seems to be quite the storm, creating havoc with air, land and sea transportation; and it has forced the closures of universities, schools and businesses. Within a couple of days though, the areas hardest hit by this storm will return to normal.  My message in all of this is to realize that

 Storms Never Last

For viewers reading this who are cancer patients, I trust you will keep those words at the forefront.  There will be difficult days as you continue your journey with cancer, but always remember there will be better or calmer days ahead. Sometimes it is very hard to realize this if you have not been feeling well recently. 

My husband and I know this all too well.  We have lived through the wallops, blizzards and the mega storms that cancer can bring.  But we also know that just when the going sometimes seems impossible to bear, things suddenly become calmer and our storm once again passes.

So remember to keep positive, be inspired and look towards the calm after the storm.



Tuesday, February 01, 2011

Another New Cancer Drug in Trial Testing

Good news!  There's another new drug presently in a trial testing stage for RCC patients.  It's name is

TIVOZANIB

There is presently a study ongoing to compare Tivozanib to Sorafenib (Nexavar) in subjects with advanced renal cell carcinoma.      http://clinicaltrials.gov/ct2/show/NCT01030783

AVEO Pharmaceuticals, Inc., manufacturer of Tivozanib have announced today that it has initiated patient enrollment in a multi-center Phase 2 exploratory biomarker study of Tivozanib, its lead product candidate designed to optimally block the VEGF pathway by inhibiting all three VEGF receptors, in patients with renal cell carcinoma (RCC).


Tivozanib is being tested for it's effectiveness on RCC and breast cancer patients.

So all of this is great news. A few months ago, I read about a new cancer drug that was looming on the horizon with the very high tech name of RAD0001.....seemed like something out of a Star War movie.  This drug later became known as Everolimus aka Afinitor which is one of today's leading cancer drugs for RCC. 

My point in all of this is that you can never give up.  RCC patients have been very fortunate for all of the treatment advances that have been made in renal cancer since 2006.  

Lesson learned here is to NOT QUIT......even though sometimes the going can get very tough!