Book Review – Coping with Cancer

August 25th, 2009 by Ronald 4

Coping with Cancer – A patient book of thoughts, advice and inspiration for the ill by Veronica Blaha Decker and Linda Weller-Ferris.

I have previously discussed a book called There’s No Place Like Hope, by Vickie Girard.  That book had a great impact on me, but it was not without its faults.  One of which, is its frequent recommendation and solicitation for Cancer Treatment Centers of America.  To some, this can be off-putting as their model of treatment is not for everyone and is not without controversy.

A nurse at the hospital where I receive my chemotherapy told me they were thinking about replacing There’s No Place Like Hope with a different book, one that did not contain the same institutional favoritism.  I was asked to review another book, Coping with Cancer as a possible successor.  The book is a quick read, about 70 pages long and is written by two very well educated psychologists with many years of experience.  You can tell this book was written by professionals in the field and contains very sound advice.

I am going to somewhat compare and contrast the two books below and try to point out their strengths and weaknesses.

-  One of the great aspects of There’s No Place Like Hope, is that it is filled with personal anecdotes and quotes from people undergoing cancer treatment.  This helps alleviate the feeling of isolation that can come with a cancer diagnosis.  It creates the sense that you are part of a larger community past, present and future that have felt the same emotional and physical pain that you are feeling.  This can be very uplifting, especially in the days after being diagnosed.  Coping with Cancer has very few stories from those experiencing the fear and uncertainty that comes with a cancer diagnosis.

Coping with Cancer is brimming with activities and strategies that help a person develop the internal and external support mechanisms for recovery.  It has a lot of ideas to aid someone in structuring their life for the marathon that is cancer treatment and the many challenges placed on family and friends.  It does this with concrete examples and suggestions, that many people will find beneficial and worthwhile.

- There’s No Place Like Hope frequently incorporates faith and spirituality into its anecdotes.  Some may find this helpful as it makes it more in-line with their own spirituality.  Coping with Cancer only has a few mentions of religion, this may make it more accessible for those who are not Christian and those who are not religious.

-  One of my favorite suggestions in Coping with Cancer, is the dream board.  This is a poster of activities, events, travel brochures, etc. that a person can look forward to doing.  They suggest placing it in a visible place so that when you are feeling down you can look at it as way to perk yourself up.  I think this is a great idea.  During my first round of chemo, I was greatly looking forward to having a large dinner party for supportive family and friends as a way of thanking them for their support and love.  It was something that I talked about frequently and looked forward to with immense anticipation. For me cooking for others is one of my favorite activities.  This event was something I would reflect on when feeling down and the though of it provided a smile whenever I was feeling depressed or overwhelmed.

- In chapter 11, page 48 of Coping with Cancer, there is a list of activities one can perform in a given day that can help perk yourself up.  I really enjoyed this list, and is definitely something to look at and incorporate if you are feeling down and are looking for a smile or pleasurable activity.

Overall, Coping with Cancer has a very clinical feel to it.  It has great exercises from a cognitive behavioral therapy angle. This is to be expected given the authors’ backgrounds and professions.  But in turn it makes the book less personal and harder to relate to.  It has lot of great coping strategies and activites but doesn’t have the same gut felt impact of There’s No Place Like Hope.  The strategies provided in Coping with Cancer are beneficial to patients who are trying to build a long-term plan for dealing with their illness.  The fight against cancer is a marathon, once you get past the initial shock of diagnosis, a framework of dealing with each day is important, and Coping with Cancer is a great resource.

They are both great books and are very complimentary to each other.  One makes you feel less isolated in your feelings and situation.  The other helps provide a sustainable manner to pick yourself up and keep moving forward on the path to recovery.  Would I recommend one over the other?  I really feel they address two different problems.  Coping with Cancer does not have the same uplifting impact on the newly diagnosed cancer survivor, but its long-term advice is something that is very important for the marathon that is cancer treatment.  There’s No Place Like Hope really helps slow the tears and soothes the initial pain of diagnosis.  But anecdotes, while insightful, are more akin to a sprint.  They help you feel better now, but don’t necessarily provide the sustaining nourishment you need to get through the long haul of recovery.

The highs and lows of chemo

August 21st, 2009 by Ronald 0

Hyper-CVAD.  Its the name of the chemotherapy regimen that can be used to treat some types of Leukemia and Lymphomas.  The “hyper” portion refers to how it is broken up into numerous small doses given over a period of time.  “CVAD” refers to primary drugs that make up the regimen (Cyclophsphamide, Vincristine, Adriamycin, Dexamethasone, Cytaribine).  By breaking up the administration of chemotherapy over multiple days into small doses, the intended effect is to minimize the side effects.  This regimen is considered one of the toughest chemotherapy regimens to undergo, and is usually reserved for patients who are in pretty good health already.  Though with the advent of very strong antiemitics it is being used in less-abled patients as well.

Course A
* Cyclophosphamide (Cytoxan)
* Vincristine (Oncovin)
* Doxorubicin (Adriamycin or Rubex)  – Kool-Aid Chemo, has the same color as cherry kool-aid
* Dexamethasone
* Cytarabine or Ara-C (Cytosar)
* Mesna (Uromitexan)
* Methotrexate
Course B
* Methotrexate
* Leucovorin  – Leucovorin is used as a ‘rescue’ agent to prevent excessive cellular damage by methotrexate.
* Sodium bicarbonate  – Sodium bicarbonate is used to produce a mild metabolic alkalosis, desirable when administering large quantities of methotrexate.
* Cytarabine

My original intention with this post was to detail how I felt undergoing each of the drugs and the effects they had on me.  Though as I sit here, I am finding it hard to recollect the exact details of each drug and the days they were administered.  I guess that speaks more to the effects than a segmented description of each drug could.  I am midway through my third round of chemo.  I have went through Course A twice, and Course B once.

Overall I would say that anyone who is facing the prospect of undergoing this treatment that it is very doable.  Many days you will be tired and sleep the whole day through.  There will be periods of time when nothing will sound appetizing, and you may subsist on Ensure or other meal replacements.   You will probably find Zofran or some other antiemitic to be your new-found best friend.  Moreover, while you are being administered the chemo, you will likely not have 100% of your mental acuity.  I liken this to the feeling you have 5-10 minutes after you wake-up before you shake the sleep out of your head.

The good news.  It will pass.  In Course A, I found that about 3 days after the final administration of Doxorubicin (Kool-Aid Chemo) that I really started to get my appetite and mental faculties back.  This usually coincides with day 7 or so of the chemo regimen.  After that you have a small break in the administration of chemo during which time, your blood counts will usually begin to fall, about day 10ish.  You may need a few transfusions of blood and platelets, but in my experience, the worst of the round is over.

Course B feels very front loaded in its administration of chemo.  I slept for the most part the first 5 days of this regimen, after that, if I did not have the spinal headaches associated with the lumbar puncture, I likely would have felt that the worst was behind me.  Again, you will likely have to endure transfusions and the waiting game for your blood counts to rise long after the chemo has stopped.

I won’t kid you.  Each round is getting a little bit harder.  I feel a bit more tired, a bit more nausea, a bit more out of it.  Then the chemo stops, the fog lifts, and I realize that I made it through the worst part of another round.  Some mornings you will wake up and feel so exhausted that rolling over feels like a herculean effort.  Some mornings I question whether I woke up at all.  Maybe its a byproduct of being in the same room for so long, but the days and dreams begin to blend together after a while.

In truth, the hardest part is the day before a round begins.  When I am out of the hospital, I feel normal.  I take on a lot of my old routines and its easy to forget that I am afflicted with cancer.  Then the party comes crashing down with the realization that I am indeed still sick, and about to leave my home for weeks.  You will need to find your gravitational center.  Something that you can cling to that gives you hope on the dark days.  For me, my wife, daughter and friends are the sunshine that poke through the clouds.  Whatever it is for you, hold on to it.  Tightly.

How lucky I am

August 11th, 2009 by Ronald 1

Though I am unlucky to have a rare and aggressive cancer, there are many ways in which I am very lucky:

I am lucky to have wonderful wife and a daughter that is too cute for words.
I am lucky to have friends and family that express their love and caring each and every day.
I am lucky that my chemotherapy hospital is only a mile away from my home.
I am lucky that my oncologist understands how important seeing my daughter is, and bent the rules to allow that to happen.
I am lucky to work for a great company.
I am lucky that because of my company I am being given the time off I need.
I am lucky to have “great” health insurance.
I am lucky that I do not have any pre-existing conditions that could make dealing with the insurance company more complicated
I am lucky that I do not have to worry about money while I worry about getting better.
I am lucky to have the option to travel to Texas to be seen and treated by the best cancer hospital in the world.
I am lucky to have a brother who was willing to be a donor for my transplant.
I am lucky that even though my brother did not match me for a transplant, that the registry has hit multiple matches that mean, I may have a better  chance at living.

In all these ways, and many more, I have been given a leg-up in fighting my cancer.

Everyday I read accounts of people that are not nearly as lucky as me:

People who do not have insurance.
People who do not have family to support them.
People who do not have a employer that has shown such caring and support.
People that have to worry about providing for those they love, while laying in a hospital bed.
People that have to choose between putting food on the table or medicine in their bodies.
People who do not have a match for the transplant they need.
People whose chances at beating cancer are less than my own.

People have complimented me on my ability to persevere and stay strong through this ordeal.  When they say these things, I shake my head, because I wonder how in the world people get through this, when they are not as lucky as me.

Relief from Post-Lumbar Puncture Headaches

July 29th, 2009 by Ronald 2

So I began my second round of chemo with a lot of confidence in my ability to endure chemotherapy and not suffer the stereotypical ill effects.  Maybe its my age and otherwise good health, or maybe TV just dramatizes chemotherapy for the sake of good entertainment, but my nausea was mild and only caused me to lose my lunch a couple times.  Obviously depending on your flavor of cancer, your chemo regimen may be different.  I personally am going through the Hyper-CVAD regimen, that is spread across many days (up to 14) depending on the cycle.

The one aspect of my treatment that I was most anxious about where the Lumbar Punctures (LP).  My experiences in the first round caused me to have a continuous migraines for 9 days after the LP was performed.  Moreover, the procedure itself was a very uncomfortable, though not painful experience.  This round I figured I would be more prepared.  I had the nurses administer Phenergan, an antiemitic that has sedative qualities to it.  This allowed me to be a lot more relaxed during the procedure, and it went off without a hitch.  This LP was performed in concert with a 24-hour infusion of Methotrexate through my IV.  The combination of the two caused me to sleep for about 18 hours.  Upon waking I was greeted with a pounding migraine that was reminiscent of my first round.

Over the next 9 days I slept roughly 14-18 hours a day due to the headaches.  Throughout the week the doctors tried numerous pain medications: MS Contin, Oxycodone, Dilaudid, Vicodin, Fioricet, IV’s of Caffeine.  All of them had little to no lasting effect on my headaches.  It was not uncommon for me to wake up at 7 AM and by 9 AM I would be asking the nurse for my cocktail of Flexiril and Ativan so that I could go back to sleep to escape the pain associated with the headaches.

After I while I found ways to mitigate the headache.  By laying flat on my back, putting on my sleep mask and beanie (due to light sensitivity and temperature sensitivity), I was able to stay awake all day.  But not able to sit up or stand for more than 20 minutes without the headache returning.

Then on Tuesday, day 11 post-LP, with my headaches not as strong but still present, a nurse, whom had not been assigned to me for a while made a suggestion.  He had worked for a neurologist, and when the patient was not a candidate for a blood patch, he would suggest they wear a back brace.

It was a, “why didn’t I think of that moment.”  The reason a blood patch is performed is so that it can increase pressure around the LP site, and hopefully the clotting agents in  the blood would stop the leak.  Well here was a simple, non-narcotic, non-invasive way of applying pressure directly to the area.  I was eager to try anything that might provide relief at this point, so he went and grabbed a back brace and I put it on.

Within an hour, I was thanking him profusely.  For the first time in over a week, I was able to go for a walk, sit down and chat with friends, or even sit behind the computer for more than an hour without a migraine laying me flat on back, literally.  I wore the brace throughout the day and evening, and only felt the need to lay flat one time.  It was the difference between night and day for me.  I was able to return to doing the things that I enjoy, and wasn’t forced to lay like a lump watching 4 channels of crappy TV.

So for those that may have come across this post, and are suffering from post-LP headaches, and for some reason a blood patch is not an option.  Please consult your doctor first, and if they find it acceptable.  TRY A BACK BRACE :)

Anecdotally it helped me and stopped me from having migraines.  Hopefully it helps you as well.

There’s No Place Like Hope

July 1st, 2009 by Ronald 4

Upon arriving on the 5th floor of my hospital, I was greeted by a large “Oncology” sign.  Here I was, 31-years old, and about to live on a floor dedicated to cancer patients.  What in the hell has happened?  Did they get off on the wrong floor?  Even through the excruciating pain, it was a surreal experience.

I slept.  I slept as an escape from the pain and my thoughts.  Its a toss-up as to which I was running from the fastest.    On my first day, while taking my medical history, the nurse told me the pain would subside once I had begun chemotherapy.  I am so thankful that he was right.  When would the relief come to my mind?  When would the nightmares of helplessness and suffocation end?  When would I be able to imagine my daughter’s face without tears welling up in my eyes?

On my first day in my room, the nurse brought in a small blue bag.  It was a CARE package of sorts, compiled by a local church, that is given to newly diagnosed cancer patients.  In it are a mix of toiletries, reading material, and other useful items that have been generously donated.  Also in there was a book titled, There is no place like Hope, by Vickie Girard.

At first I looked at the book with skepticism.  Throughout my life, I have had to overcome my share of trials.  Through that I have learned, when things go wrong, to pick myself up, dust myself off, and keep going.  The very idea of reading an inspirational or motivational book seemed an affront to my cynical,  self-reliant nature.    I was busy with visitors, on the phone, or as had become my most common activity, sleeping.   The book sat around my room unopened for days.

Friends would come and chide me that I had not lifted the blinds or turned on the lights in my room since my arrival.  I would laugh at the notion, as my office at home was always dark as well.  It was simply my hermit nature manifest in a new location.  One afternoon, when I was alone I sat on the couch and raised the blinds.  It was mid-day and I had a pretty good view from my hospital window.  If it had been oriented differently, I probably could have seen my house.

When I sat down, I noticed on the table next to me, Vickie’s book.  I decided to open it up an take a look. I opened it to the dedication page, and stopped.  Within a few sentences the tears were to thick to read through and I had to put the book down.  This process of reading a few sentences and wiping my eyes continued for the next half hour.  I managed to make it through the first page.

The book is divided into many sections, diagnosis, nighttime, children, hope and loss to name a few.  Each section has quotes, shared experiences and insight intended to help the reader maintain their resolve.  Each section is a treasure trove of hope unto itself.

Since my diagnosis, I have read articles on Leukemia, information of this drug or that, information about long-ago clinical trials, and details of those still on-going.  But out of all of it, nothing I have read has motivated me or prepared me to fight cancer more than Vickie’s book.

Thank you to whomever put together that little blue bag for newly diagnosed cancer survivors.  Thank you for including such an important and needed book.

Thanks Vickie.

Gleevec – The Wonder Drug

June 29th, 2009 by Ronald 0

Imatinib is a drug used to treat certain types of cancer. It is currently marketed by Novartis as Gleevec (USA) or Glivec (Europe/Australia)

-Wikipedia

This drug presents an interesting dilemma when talking about health care costs in America.  In the 1960’s it was discovered that patients with chronic myelogenous (or myeloid) leukemia (CML) had a common unusual chromosome.  This was found to be due to the transposition of two chromosomes, that when joined  creates a new gene (Philidelphia Gene PH+) that acts as the factory pumping out a new enzyme;  which results in the production of defective and harmful white blood cells.  Interested parties began working to find compounds that would inhibit these enzymes.  In 1994, Novartis successfully patented compounds that showed the potential to do so.

The story may have ended here if it wasn’t for  Dr. Brian  J. Drucker a research physician in hematology working at the Oregon Health Sciences Univeristy in Portland.  Novartis initially had no interest in continuing research into the patented compounds.  With only 5,000 new cases a year of CML, development of these compounds did not seem a worthwhile investment.  Dr. Drucker, became interested in these compounds as a possible treatment for people afflicted with CML.  In working with Novartis, Dr. Drucker was able to obtain a few of their more promising enzyme inhibitors.

Through his research he was able to discover the Gleevec was extremely effective at inhibiting the growth of the harmful white blood cells.  It also had the side benefit of having very little side effects.  For cancer treatment, this was truly a breakthrough.  Novartis still resisted investing in the drug, as again, the target market was not large enough to make the investment seem viable.  Fortunately persistence won out at the end of the day.  Dr. Drucker managed to convince Novartis to support some small scale clinical trials.  In 1999, Dr Drucker presented his dramatic findings to the world, and it was greeted with widespread interest.  At this point, Novartis became a very interested party.   The drug was run through large scale clinical trials, and was approved by the FDA.

Today, with Gleevec, the average five-year survival rate for patients with CML is 90%.  It has also become part of the preferred treatment for people like myself who are afflicted PH+ Acute Lymphoblastic Leukemia (ALL).  It has become an essential component in the fight to keep my Leukemia in remission while awaiting a bone marrow transplant.

So far the story seems fit for TV.  An outoging doctor, who rolled up his sleeves and worked part-time at a cancer clinic.  Who was then inspired by his patients to work and push harder on their behalf.  He fought against the disinterest of the large corporation, and found the wonder drug that would revolutionize the treatment of Leukemia.

So now we arrive at the happy ending, right?

For some yes.  For those with health insurance, Gleevec  continues to work miracles in the everyday lives of cancer survivors.  Its high effectiveness and small list of side effects are a truley magnificent discovery that have added many years to cancer survivors lives.

But there is always the flip side of the coin.

The cost.

A month supply of Gleevec costs over $3,000-4,000 depending on your dosage.

So where does that leave the uninsured and underinsured.  Its not hard to guess.  You can easily find stories of people who cannot afford the medication.  Stories of people who rely on the kindness of community organizations to defray the costs, and those who manage to qualify for free or reduced handouts from Novartis. In-line with those stories, you will find sympathetic individuals from countries with socialized medicine that pay for the life saving medication, and suggestions to try to import the drugs from countries like India that produce generic forms of the drug.  Though, that is a story unto itself.

Throughout the day, when I talk to friends and family.  I try to share what I have learned, in an effort to educate as many people as possible.  Each time I tell my story, I am reminded of how lucky I am to work for a great company, and knock on wood, have good health coverage.  But my story could easily have been different.  If presented with the realities of paying over $3,000 a month for a life-giving prescription, while fighting cancer, and trying to provide for a wife and daughter… I really don’t know if I would be doing as well in my fight as I am today.

Its not death that I am afraid of.  What scares the hell out of me is not being there for my wife; not being there for my precious daughter.  Would it be in their best interest to sustain my life at the expense of possible life-long financial ruin?  Would that be selfish of me?

I can’t for the life of me understand why in the hell this a question many American’s are forced to ask themselves.

Lumbar Puncture – one of the more unpleasant experiences of chemotherapy

June 29th, 2009 by Ronald 5

Lumbar Puncture.

a lumbar puncture (colloquially known as a spinal tap) is a diagnostic and at times therapeutic procedure that is performed in order to collect a sample of cerebrospinal fluid (CSF) for biochemical, microbiological, and cytological analysis, or very rarely as a treatment (”therapeutic lumbar puncture”) to relieve increased intracranial pressure.

So far in this round of chemotherapy I have had two lumbar punctures.  In both cases they were used for cytological analysis and to give me chemotherapy intrathecally.  First to determine what particular flavor of Leukemia is trying to kill me, and to find out what other damage the Leukemia may have done to my chromosomes.  This is where they determined that my brand of Leukemia was PH+ and that I had the Trisomy 8 marker.

In my case, the lumbar punctures were performed with me laying flat on my stomach with a CAT scan machine positioned over my lower back.  The doctor used the CAT scan to guide the needle in into my spine.  They then proceed to draw off 3cc of CSF and replace it with 3cc of intrathecal chemotherapy.

The first time through the procedure was  a piece of cake.  I was so out of it due to fatigue and the medications that I hardly noticed the procedure.  The second time was a whole different matter.  I’m not one to usually get anxious or worry about the uncomfortable nature of a procedure.  When you have little control of what happens next, you learn to accept with as little complaint as possible.

On the second go round, I was alert and very aware of the needle in my spine.   Throughout the procedure, you feel somewhat numb below the needle insertion point. I also had neglected to use the rest room before the procedure.  Note to anyone reading this and about to go through the procedure.  Use the bathroom first!  So there I lay with a needle in my back with the overwhelming urge to use the restroom. This caused me to start having a bit of anxiety and feel a bit nauseous.  The doctor would frequently ask me if I was OK.  My response, “hurry the hell up.”  To which he responded, “this stuff comes out very slow.”  I groaned.

He would count out cc as as he hit a new integer, taking what seemed an eternity to reach 3.  Then he quickly injected the chemotherapy and removed the long needle from my spine.  I was covered in a cold sweat and longed for a nap.  What was maybe a 10 minute procedure felt like a marathon.

Then the headache set in.  One of the common side effects of a lumbar puncture is a headache.  Which is not too surprising since they are sucking fluid from your brain and spine.  These headaches are likened to migraines, and that is a very accurate comparison.  A headache that lasts past a few hours of the puncture usually indicates of CSF leak at the puncture site.  This is commonly treated by a procedure called an epidural blood patch.  This is where they inject the patients blood around the puncture site, so that the pressure and clotting agents in the blood will patch up the leak.

Unfortunately for Leukemia patients, with low platelet count, and high risk of infection, this is not an option.  Lucky me.  So many days out now, I am still getting headaches which are being treated by Ultram and the occasional press of the button on my Hydromorphone loaded PCA.  The first few days in the hospital, my PCA became my best friend.  The means by which I could not escape my pain, but make it at least tolerable.  The headaches are thankfully decreasing in severity a strength and should be gone completely within a few more days.  It will be a  welcome relief from  one of my few remaining symptoms of this round of chemotherapy.

The doctor has indicated that I may be able to go home in about 6-7 days.  I am unsure how long I will be able to remain out of the hospital, as it probably depends on how quick and successful the donor search is, and how quickly I can move to Texas, albeit temporarily.  I’m hoping that I can stay out and enjoy life for a bit and then proceed to Texas for the next step in the process.  If I’m going to roll the dice, I am eager to get started.  When faced with a tough situation, I’m one to keep trudging along, waiting is not one of my strong suits.

When I go home, I want to have a nice weekend.  Invite over the dozens of family, friends, and rediscovered  friends to my house for a feast.  They fed my hopes, and in my best way of saying thank you, I want to feed their bellies.  I can’t wait.  And from the rumbling tummies I hear amongst my friends, they are overdue for a good home cooked meal.

In a doing a little bit of math using the statistics from my original post.

3,350 men affected by ALL in 2009

10.1% of those affected between the ages of 20-34

25% of those will have PH+ ALL

5% of those will have the Trisomy 8 marker

With a bit of quick math, that means there are a grand total of:

4.2 cases of my flavor of Leukemia in 2009

Juggle around some census numbers and you arrive at:

1 in 72,380,952 million chance of getting this disease.

I should have bought a damn lottery ticket instead.

I dodged a bullet without knowing

June 27th, 2009 by Ronald 0

A few days ago a blood draw showed that I had blast cells in my blood.  About 4-5% concentration.  This would mean that my Leukemia was not responding to chemotherapy and that the Leukemia was already returning to my system.

The doctor in his infinite wisdom did not tell me, since he knew I would grill him with questions that he did not have an answer to.  Instead he told my wife and best friend.   How they managed to keep it from me, I do not know.  But in hindsight I am glad they did.

Since coming down with Leukemia I have firmly placed my analyst hat on and tried to become more knowledgeable about the disease that is trying like hell to kill me.  I figure the more I learn, the more likely I am to have the knowledge and strength to kick its ass.

With the the preliminary tests showing positive for blast cells, I would have done my normal research and found out that in all sense, it would have meant disaster.  I would have had to start immediately in a different round of chemo, and it would have dramatically impacted my likelihood of survival.

Yesterday the doctor came back in and to me that the results of the follow up  flow cytometry test showed that I did not have blast cells, that it was a false positive likely due to my daily Neupogen shots.  I’m thankful for his thoroughness, and his ability to understand his patient’s intellect.  By keeping that small bit of information from me until he was positive, he kept me from sinking into a statistical hell of outcome statistics and graphs.  Given my nearly Vulcan penchant for logic and reason, its likely that it would have dramatically impacted my spirits.

Everyone wants to beat cancer.  Not everyone does.  Hope is what keeps people fighting.  Hope to be there for you wife.  Hope to be there for your daughter.  Hope that the you are on the right side of the coin flip when the final bell rings.

Thanks doc for not diminishing something so fragile in one as cynical as myself.

Welcome iamronsmith.com

June 26th, 2009 by Ronald 2

First!

A little background on why I am writing this blog and what I hope to accomplish.  On June 11, 2009 I was diagnosed with PH+ Adult Lymphoblastic Leukemia (ALL).  The onset of symptoms in hindsight only began around early June.  My first symptom was extreme back and hip pain, that I originally thought was related to a left knee injury in April.  I believed the back pain was caused due to walking and gait changes associated with the leg immobilizer and the need for physical therapy.

Over the next week,  I began to notice substantial and numerous unexplained bruises and  petechial rashes on my skin.  This prompted me to go to my doctor on June 10th with the belief that maybe I was anemic.  The following morning my doctor contacted me and indicated that I should go to the hospital for follow-up tests as the blood test results were alarming.  A few hours later, I was diagnosed with Leukemia.

And so begins my journey as a cancer survivor.

I was encouraged by friends to start keeping a diary of sorts as a form of therapy, but I was a very private person and initially resisted.  In time, I have come to believe, that instead of keeping a blog as means of expressing my emotions or thoughts, that I would  instead use it to share what I have learned about my disease and to provide updates with my friends and family.

First a few statistics to show how many people are affected by ALL

It is estimated that 5,760 men and women (3,350 men and 2,410 women) will be diagnosed with and 1,400 men and women will die of acute lymphocytic leukemia in 2009

From 2002-2006, the median age at diagnosis for acute lymphocytic leukemia was 13 years of age. Approximately 60.8% were diagnosed under age 20; 10.1% between 20 and 34; 6.5% between 35 and 44; 6.4% between 45 and 54; 5.8% between 55 and 64; 5.1% between 65 and 74; 3.8% between 75 and 84; and 1.5% 85+ years of age.

From 2002-2006, the median age at death for acute lymphocytic leukemia was 48 years of age. Approximately 20.9% died under age 20; 16.0% between 20 and 34; 9.6% between 35 and 44; 11.3% between 45 and 54; 12.2% between 55 and 64; 12.7% between 65 and 74; 11.6% between 75 and 84; and 5.8% 85+ years of age.

Reference: http://seer.cancer.gov/statfacts/html/alyl.html

ALL has also impacted my chromosomes in what is called the “Philidelphia Chromosome (PH+)”.

The Philadelphia chromosome (named because it was discovered at hospital in
Philadelphia), is actually what is known as a balanced, or reciprocal,
translocation.  What this means is that early in cell division a process
known as crossing over occurs.  This is when the tip of each of a a pair
of chromosomes breaks off and switches places.  This increases genetic
variety in a species and is one of the reasons that no two organisms are
exactly alike (unless they are clones).  Sometimes the pieces don’t
switch places correctly.  One of the errors that can happen is called a
translocation.  A piece of one of the chromosome pairs doesn’t make it
to the other to trade and actually attaches to another chromosome that
isn’t its pair.  In the “Philadelphia chromosome” a piece of chromosome
9 attaches to chromosome 22.  It is a reciprocal translocation because
part of 22 also attaches to 9.  Other types of translocations occur when
the piece attaches to the other chromosome but they don’t trade info.
The information that piece carries is inserted next to another gene and
causes what is known as a “fusion protein.”

Reference: http://www.newton.dep.anl.gov/askasci/mole00/mole00336.htm

Although more than 60% of patients with PH+ ALL succeed in achieving complete remission using chemotherapy, most of them will relapse and fewer than 10-20% will remain alive 5 years after diagnosis.  This has prompted doctors to forgo prolonged rounds of chemotherapy and instead pursue a bone marrow transplant as the preferred method of treatment.  The optimal time for the transplant has been shown to be when the patient is in what is called CR1, which is the time immediately proceeding chemotherapy when the ALL is in remission for the first time.  The graph below show the improved long-term survival rates of ALL treated by transplant from 1987-2006.

Bone Marrow Tranplant Outcomes

Bone Marrow Tranplant Outcomes

Thank you for taking the time to read all that.  This is hopefully the first of many posts in the upcoming weeks and months.