The many aspects of cancer

In some ways having cancer is very simple: It is a serious disease that invades your body and, in most instances, will end your life if not treated effectively.  In that sense it is very simple.  But in other ways having cancer is a very complex and daunting series of factors, many of which are interrelated and most of which are continually changing.  When viewed from this prespective, cancer can potentially become overwhelming.  How each patient deals with his or her own situation is a totally individual approach.

At the present time there are five main aspects of my disease that I tend to focus on.  Everything else is either not a current issue in my case, or it is beyond my ability to impact, in which case I simply give it to The Lord God Almighty to deal with.

My first aspect is the cancer itself.  I am being treated with a chemo drug called Romidepsin,  which I trust is doing a good job of eradicating all the cancer cells in my body.  Unfortunately it takes time for progress to be detectable, so I will not receive any reassessment testing/scans for 8 weeks.  Depending on the reassessment results, I expect to receive this treatment for probably the next 6 months.  In the meantime I just need to trust that my team is winning.  Unfortunately, this drug is causing certain side effects that were not present with some of my earlier drugs.  The main ones are cold chills at night and my sense of taste is getting all beaten up.

The second aspect is my lower back and spine area, which is where the initial tumor was detected.  While the tumor itself has been effectively dealt with, and is no longer a direct factor, the residual damage it caused is taking time to heal and rehab.  We were making good progress up until my treatment last Tuesday when a small but ill-timed movement of the exam table caused me to strain and reinjure some muscles, and set me back a few weeks in that area.  But I can already tell that the recovery has started, so I just need to be sure to avoid small and ill-timed movements.

The third aspect is the strength and flexibility of my right leg.  The tumor caused spinal nerve pressure in my right leg and the resulting pain and lack of use are still impacting my movement and mobility.  I am being treated by a Physical Therapist who really seems to know what he is doing and progress is definitely being made, although it was put on hold temporarily after last Tuesday's back problem.

I would say without question that the biggest factor currently affecting my daily life is fatigue.  During my first round of cancer treatments, fatigue was my constant companion from day one, and seemed fairly consistent, rated most of the time as a 4 on a 10 scale (1 being no fatigue and 10 being extreme).  This time around it seems to be at about a 7 or 8.  Getting dressed in the morning is exhausting.  Fixing a sandwich in the kitchen for lunch is taxing.  The fatigue is a natural side effect of cancer, and results from many chemotherapy drugs.  Romidepsin in particular can cause extreme fatigue in some patients.

The final aspect would be my mental outlook.  I am a fairly positive glass-half-full kind of guy to start with.  And I tend to apply about 110% effort to whatever tasks I undertake.  Because of the implications of this battle I may have jacked up the bar to about 125%.  That coupled with my strong faith in my Heavenly Father, and I am not too concerned with the long term outcome of my present battle.  But I find that this second set of treatments are requiring more effort to stay positive.  My pain and discomfort, extreme fatigue and some added side effects, all being present 24/7 since before Christmas, are adding to my mental challenge.  But I also believe that the back and leg pain, and the mobility issues will be resolved in the next several weeks.  That should provide an added big boost.

Treatment #2

Last Tuesday was my second Romidepsin treatment and it seems to have gone a little better than the first one.  No nighttime chills and fever spikes, and the next-day-blahs didn't last as long.  But I did still have a drained feeling, and my sense of taste suffered for a couple of days, but then returned to normal.  Overall not as bad as the first time around, so maybe my body is adapting to this new chemo drug.  If this is as bad as it gets, I'll consider myself lucky and focus on other things.

My blood tests revealed that my platelet count had dropped very low, so after my Romidepsin on Tuesday, I was treated to a platelet infusion for desert.  A low platelet count means that your blood does not clot as efficiently and quickly as normal, and the implications of this can be quite severe.  Hopefully by my next treatment the counts will be closer to normal.

On Thursday I had my second Physical Therapy session, and got introduced to a series of exercises that I need to incorporate into my daily routine.  My extended period of inactivity, while undergoing radiation treatments and enduring significant back and leg pain, left my muscles weak and my stamina quite low.  Now I begin the slow but necessary process of rebuilding my strength and endurance.  Without question the most important thing I can do for myself (and my family) right now is faithfully follow the exercise routine that has been developed for me.  The resulting impact on my quality of life will be well worth whatever effort is required.

Unfortunately the exercises will not have much direct effect on the fatigue, which is a normal result of cancer and chemotherapy.  I know from my past experience that fatigue is just something that a cancer patient must learn to live with.  Only time will tell how much of my current fatigue is the result of past inactivity and how much is drug induced.

My third treatment is next Tuesday and then I get a week off for rest and recovery.  That will complete cycle 1 and by then I will hopefully have a better feeling for how I react to this new chemotherapy treatment.  Most likely my cancer will not be reassessed (including scans) until after the second cycle.  So until then we just try to make the best of life with Peripheral T-Cell Lymphoma, and appreciate the richness and fullness that exists in the other aspects of our lives.  As I have said before, I may have cancer, but I will not allow it to control and define my life.

Day 1 Cycle 1

Last Tuesday we left home at 7:45 AM for our visit to Duke, and walked back in the house about 7:30 PM.  It seems like that may be our "normal" day for treatment days in Durham.  The morning bloodwork revealed that several of my counts are running low, white cell count, red cell count and platelet count.  The reason for the drops is not clear and we will need to monitor them closely.  If the platelet count drops much further I might need to start blood transfusions to avoid potential clotting problems.

In the early afternoon I was introduced to Romidepsin, my new chemotherapy drug.  The treatment starts off with a couple of premeds, and then the main course is served over a 4 hour infusion.  Sitting in that treatment chair for 5 straight hours is not a highly recommended way to spend an afternoon.  While my past experience with chemotherapy drugs has been quite good, in terms of avoiding side effects, Romidepsin may prove to be a different animal.  Immediately after the infusion I felt very blah and drained.  I climbed into bed with a headache, and began having chills.  The thermometer registered 101.3, and a quick call to the oncologist-on-call suggested we watch it and head to the ER if it continued to increase.  Fortunaly it passed after a short time and the night was restful.  In the morning the blahs and aches and pains had returned, but over the next couple of hours I began to feel better, and by early afternoon was more "normal'.  Today has been much better and hopefully my negative reactions were just an introductory experience, not to be repeated after each treatment.  Time will tell.

On Wednedsay I had my initial Physical Therapy session, just what I needed the day after a treatment.  A plan was developed to hopefully restore 100% of the strength and functioning in my right leg and the exercises have begun.  During a PET/CT scan last week it was revealed that I have a new compression fracture in my L3 vertabre, most likely caused by the tumor.  Whether that will be the source of ongoing difficulties remains to be determined.

All in all the last few days have been busy and eventful.  Hopefully the reactions after the Romidepsin were not typical, but if they prove typical we will just have to avoid any scheduled activities for the next day.  The blood counts may infact improve after a few treatments so time will tell us the answer on that front.  Seems like a lot of waiting and watching lie ahead but such is the life of a cancer patient going through treatments.  Fortunately I know that My Heavenly Father is with me  every step of the way so I'm putting all my faith and hope in Him.  That makes sleeping at night so much easier.

Can you say Romidepsin ?

Last week was spent completing various testing and reviewing treatment options.  There was one specific clinical trial that seemed to be the most interesting for my particular situation.  One problem that was identified during my testing was the fact that some of my blood counts are lower than normal, probably as a result of the earlier radiation treatments, and did not meet the minimum requirements for the clinical trial.  If we had decided to wait a few more weeks for these counts to increase, I would probably get accepted into the trial.  But it has been 2 months since my initial diagnosis and further delay in starting treatment just did not seem a desirable approach.  So I withdrew my application for the clinical trial, which is still a potential option sometime in the future, and have elected to begin treatment under a different protocol.

Tomorrow (Tuesday) I will receive my first infusion of a drug called Romidepsin.  Unlike my last chemotherapy treatment, which involved a cocktail of 5 different drugs, this treatment will only involve this one drug.  The infusion takes 4 hours to complete and is administered over a 4 week cycle.  Weeks 1, 2 and 3 involve an infusion and week 4 is an off week, or recovery week.  At that point the cycle repeats.  I am not sure yet as to the schedule for reassessment testing, nor how many cycles are expected to reach completion.  Obviously, everything is dependent on how the disease reacts to Romidepsin, and that remains to be seen.

One other unknown is how my body will react to this new chemotherapy treatment.  Only receiving 1 drug instead of 5 will likely minimize the chances of a negative reaction.  My experience during my earlier chemo treatments, and the bone marrow transplant process, was quite positive, with very few side effects.  I am hopeful that my history of being able to withstand the rigors of these chemotherapy drugs will continue, and my reaction will be quite minimal.  But each drug is different so we will just have to see how things go over the next few weeks.

I can think of numerous other things that I would prefer to do tomorrow, rather than drive 1 1/2 hours to Duke Cancer Center, and spend 4 hours having a poisonous drug pumped into my bloodstream.  But I have cancer.  I don't like the fact that this monster has invaded my body and is intent on ending my life.  But I must face the reality of things. So the sooner this treatment process gets started, the sooner my cancer begins receiving the treatments that will completely eradicate it.

Waiting for the action to start

It has been a couple of weeks since my last post, and most of the focus has been on my lower back and right leg.  The tumor on my spine was putting pressure on my spine and the nerves to my right leg.  The result was very intense pain in both the back and leg.  The radiation treatments were effective in significantly reducing or eliminating the tumor, which relieved the pressure, which in turn relieved the pain.  I am probably back to about 90% of normal, with some residual pain and some weakness in my leg.  I begin physical therapy in another week or so and hopefully that will take care of the last 10%.

Next week I go to Duke on Monday for a series of tests, that should complete all of the requirements for the clinical trial I am hoping to get into.  I should know by mid week if I have been approved, which looks likely, and then we proceed on to treatment.  My first treatment has been tentatively scheduled for March 4, and I am looking forward to getting started.  It may sound odd that I am looking forward to starting chemotherapy, but this cancer isn't going to go away by itself.  And the sooner we get the treatments started, the sooner it gets dealt with.  Sitting and waiting is not one of my strong suits.

My mental outlook is quite good, although it is difficult to stay totally positive when there is a constant ache/pain in your back and leg.  That is distracting.  But I know that we have beaten this monster before and I fully intend to do it again. My determination, a world class medical team, your prayers, and the everpresent Hand of God combined to give me victory in my last battle, and this is just another bump in the road.

Another clinical trial

It has been about 5 months since we last made the hour-and-a-half drive to Duke, but we found our way to Dr. Beaven's office with no difficulties.  It was good to see the sweet-natured lady who has quickly become such an important and beloved member of our family.  We have the utmost confidence in Dr. Beaven, and feel that God has placed us exactly where we need to be as we continue this battle with the cancer that has invaded my body.

While there are several clinical trials available at this time, Dr. Beaven strongly recommended one that is targeted at Non Hodgkins Peripheral T-Cell Lymphoma patients who have been in remission, but recently were found to have relapsed and once again have the active disease.  That describes me to a tee.  I have applied to be accepted as a participant in this study, and will need a few more tests before acceptance can be granted, but we are confident that I will be accepted.  Treatment should then begin in early March, at the Duke Cancer Center.

The study drug in this trial is called Alisertib (go ahead and pronounce that, I dare you).  It is a new type of drug that has been developed to interfere with cellular division and growth in certain types of potentially cancerous cells.  This is contrasted with more "conventional" chemotherapy drugs that simply kill all fast growing cells.  It is also administered in pill form rather than IV infusion, which is the more normal method of treatment.  If I am approved for the trial, I will be given either Alisertib, or another drug called Romidepsin.  Dr. Beaven has recently worked with Romidepsin with good success but feels the Alisertib is equally appealing.  Based on a random selection process in the clinical trial, 50% of the patients will be given Alisertib and the other 50% will receive Romidepsin.  I should find out which group I am in within the next couple of weeks.

Regardless of the drug involved I will need to go to Duke for treatment once per week during the trial period.  Theoretically this could go on for up to two years.  More details will become available in the coming weeks, but at least we now have some idea of what lies ahead.  Uncertainty can be difficult to deal with, but we are now starting to understand things more clearly.

Obviously we would prefer that I was still in remission, but that is not the reality of things.  My monstrous disease has returned, which means we must fight it with every fiber of our being.  And we thank God that we have access to the staff and facilities at Duke Cancer Center.  The plan is beginning to unfold, and our family motto is still as applicable as ever: We're going to beat this!

I married an angel.

My last experience with Non Hodgkins T-Cell Lymphoma, which started about 18 months ago, involved almost no symptoms of the disease itself, and very minimal side effects from the chemotherapy treatments.  The only real evidence that I had to deal with on an ongoing basis was fatigue.  My mobility was very normal and my pain or discomfort was not an issue.

This time, however, things are very different.  The primary disease location is a tumor on my spine, in my lower back, and the swelling from the tumor is exerting pressure on my spine and the nerves leading to my right leg.  The result is extreme pain in my lower back and right leg, which has significantly impacted the movement and use of my leg.  I quickly reached the point where my entire day was spent in bed, dreading the need to move at all (including trips to the bathroom), and relying on pain pills to achieve any level of comfort.

Fortunately, my daily radiation treatments quickly began to impact the tumor, reducing the swelling and in turn the pressure.  Over the past two weeks I have progressed from being bedridden, to a situation where I am now able to move around without undo pain or discomfort using a cane, get a decent night's sleep, and can see that there is light at the end of the tunnel.  The radiation treatments end next week and hopefully will have pretty much eliminated the tumor.  Our visit to Dr. Beaven at Duke will determine the next treatment phase.

During all of this, moving around silently in the background has been a force of nature that is a combination of mind reader, army medic, weight lifter, master chef and Florence Nightingale lookalike.  It is actually my wife Holly, assuming the many roles associated with being a care giver.  It is not a burden that she went looking for, but rather one that was thrust upon her.  She could quite easily find things to fill her day, other than getting me a glass of water,  helping me pull on my socks each morning, and driving me to the hospital every day.  All the while she is acting as my motivational cheerleader and fitness instructor.

I don't know what I would do without her by my side.  She happily accepts whatever task arises, no matter the hour day or night.  I am the one who gets all the cards in the mail.   At church this morning I was the one that everyone came to see and inquire as to my status.  Yet there she was, quietly assessing my stamina, and suggesting that maybe it would be wiser to return home rather than stay for Sunday school.

I am so very fortunate and so very blessed in so many ways.  And right at the top of the list is the fact that I am married to an absolute angel.

Heading back to Duke.

Since my last post, we have continued with the radiation treatments and gleaned some additional information regarding the tumor on my spine, which seems to be the primary location where the cancer has taken up residence.  My radiation will consist of a total of 10 treatments, 6 of which have been completed to date.  The tumor was about 2" in size, and that added mass in my spinal area was exerting pressure on my spinal cord and the spinal nerve going to my right hip and leg.  The result was some rather severe pain in my back, hip and leg areas.  But the radiation quickly began to exact its toll on the tumor and the resulting pain has diminished quite a bit.  That, coupled with an ever-present bottle of oxycodone, have allowed me to stay ahead of the pain most of the time.  The final radiation treatment is next Monday, and by then we are hoping that the tumor area is largely resolved.

On Thursday of next week we begin a new round of trips to and from the Duke Cancer Center.  We meet with Dr. Beaven to review the biopsy results and discuss possible options for clinical trial treatments in the coming weeks/months.  Since Peripheral T-Cell Lymphoma is such a rare type of cancer, the oncology community has not yet been able to develop a standard treatment protocol that yields a satisfactory level of resulting outcome (that is a nice way of saying the survival rate is not at all good).  That is why it is important to be receiving treatment at one of the highly regarded cancer research hospitals, where they are deeply involved in, and aware of, all of the research being done worldwide.  Hopefully Dr. Beaven will have been able to identify one or more options for our consideration.

Needless to say we are anxious to find out what lies ahead.  And whatever that may be, we know that our Lord and Savior, Our Loving Heavenly Father, will be with us every step along the way.  We ask for your continued prayers as our latest journey unfolds.

How quickly things can change.

We were fortunate enough to be able to spend the holidays with our families; Christmas with our daughter Jill and New Years with our son Adam.  We returned home a few days into 2014 and I was having problems with a sore back.  So I had an MRI done to see if we could determine the cause, and we were very surprised to find a 2" tumor on my spine in the L3/L4 region.

In a quick series of tests and diagnostic sessions, it has been determined that my cancer has returned and I have already started radiation therapy to treat the tumor area.  The final biopsy results are not yet available, but we already know it is cancer, the question now is what specific type.  A PET scan showed new areas of activity, although they appear to be small in number and size (except for the tumor).

We are scheduled for an early February appointment with Dr Beaven at Duke to discuss longer range options.  My guess is that when we finish the radiation in two weeks, and the tumor has been destroyed or largely resolved, we will begin some type of systemic chemotherapy treatment at Duke as part of a clinical trial.  That will be the focus of our discussions in early February.

Last summer and fall, after followup visits and tests at Duke, I was determined to be in complete remission and cancer free.  By the end of 2013 it had returned, which is an example of how aggressive and nasty, Non Hodgkins Peripheral T-Cell Lymphoma can be.  Everything about it is mean.  I would be lying if I said I was not disappointed to hear it was back.  But I was also well aware that recurrence was a definite possibility.  My first experience with NHPTCL resulted in a hard fought and victorious outcome.  But it has now returned for round two, and I fully expect to achieve another victory.  I am prepared to do battle with this monster as often as necessary, until a cure is finally found and NHPTCL is an extinct disease.

Much information is still to be collected and analyzed, so we will be making numerous trips to Duke in the coming weeks and months.  Please keep us in your prayers and we promise to keep you posted on our progress.  Those of you who followed our earlier experience with NHPTCL know that we place our total trust and faith in the Lord God Almighty.  And His loving faithfulness during our earlier struggles have only strengthened our belief that He will be with us during our upcoming time of need.