Scrambler Therapy Report

For the past 2 weeks I have driven daily to Mayo Clinic in Rochester to take part in a clinical trial for treatment for Chemo Induced Peripheral Neuropathy (CIPN).  Today was my last treatment, and here are my observations:

CIPN is a tough nut to crack!  It does not respond to treatments that other neuropathies seem to respond to, such as acupuncture, medications, or supplements.  Until now, I have been told that there was nothing that could be done for the symptoms—constant tingling, numbness, stiffness, and pain.

Recently the US has become interested in testing Scrambler Therapy for CIPN, since this type of therapy has been successful in treating other types of chronic pain.  It has been used extensively in Italy and Korea since the 1990’s.

Through a randomized choice, I was selected to receive the Scrambler Therapy (as opposed to the control group who received TENS therapy).  Both are electrical stimulation, but Scrambler is much higher frequency and reaches deeper into the nerve fibers.

The theory behind Scrambler is that is can retrain the brain (scramble the messages coming from the nerves) to receive signals that are NOT painful.  This is done with pads placed on strategic points on the feet (and sometimes the hands), and then the electric current is turned up as high as can be tolerated.

I began feeling some changes—a lessening of the numbness, tingling, and pain—within a couple of days.  It only lasted a few hours, and then I was back to square one.  However, beginning about treatment #6 or 7, it was lasting several hours…and finally lasted overnight.

The treatments did a couple of other things to my body:  I became very tired—pretty exhausted, actually.  The nurse explained this as the brain having to work very hard during treatment, receiving, translating and attempting to retain messages that are new and different.

The second thing I noticed was a heightened sense of depression, mixed with some anxiety.  This also makes sense when you think of the chemicals in the brain that become out of balance when we are depressed or anxious.  I’ve had a low level of depression for many years, which is managed nicely by a low dose of an antidepressant.  But when all this new activity kicked into my brain, it likely threw the chemical balance out of whack as well.  Both of these things—tiredness and depression—I expect will subside now that the treatment is over.

“Success” in this trial is defined as a 50% decline in symptoms from the first day through the last day.  In those terms, I have had a successful treatment.  My symptoms are not gone, but they are reduced.  I still have tingling, numbness, stiffness and some pain, but at this point it is probably half of what I had prior to treatment.  The unknown is this:  how long will it last?  For other kinds of chronic pain, the symptom relief has lasted for years.  For CIPN, it has not been used long enough to know the lasting effects.

I send a weekly report to Mayo for the next 8 weeks, where I rate the symptoms each week.  Two weeks ago I started with numbers in the 4-6 range.  Today my numbers were 1-2 during treatment.  At this moment (7 hours after treatment), they’re at 2-3.  If they will stay anywhere in the 1-3 range, I will be thankful for that amount of reduction!

After 8 weeks, if I choose to do so, I can do another 2 weeks of the control therapy, (the TENS therapy), which is similar in how it is administered, but is a much lower electrical frequency.   If I still have symptoms at the 8-week point, which I expect I will, I plan to do the TENS just to see if I can get further relief.

And, I still have one more option.  If my symptoms return to the 4-6 level, I can be referred to the Mayo Pain Clinic where I can receive “booster treatments”.

There was a little (well….maybe it was bigger than I want to admit!!) part of me that was really holding out hope for a “cure”—a complete reduction of the neuropathy, a return to normal-feeling feet…even a return to ‘pretty shoes’.  The cure didn’t happen, but I have bought a new pair of ‘pretty’ shoes that I hope to wear more often that I’ve been able to in the past.

Bottom line:  I’m very thankful for this opportunity to take part in the clinical trial!  I had excellent care from the nurses who administered the treatments.  At this point in time, I have a reduction in my symptoms which is something I did not think was possible.  And even if the symptoms increase again, I have further options.  Life is full of good things and good people!

P.S.:  So many people have shown an interest in this therapy since I started talking about it.  To learn more:  Google “Scrambler Therapy”.

Breaking News!

I can’t believe it’s been over a year and a half since I last wrote a post for this blog!  That can only mean one thing—life on the cancer front has been totally boring!!  Three cheers for boredom!!  I continue to have good reports every six months, and will be reaching the 4-year mark in August…on my way to the “magical” 5-year mark that the cancer folks seems to think marks a cure!  (This pertains to my colon cancer, but not the non-Hodgkins lymphoma.)

However…as of today, I am ready to share some other type of ‘cancer news’…thus this blogpost is being born!

Many reading this may recall that the one lasting after-effect that I’ve had from treatment is peripheral neuropathy, primarily in my feet, but some in my hands as well.  The official name is Chemo-Induced Peripheral Neuropathy, or CIPN.  It amounts to various levels of numbness, tingling, achy-ness, and pain in the feet/hands.  Not everyone who has chemo gets neuropathy, but those who do get it, have had few, if any, choices for relief from the symptoms.  There are neuropathy clinics that advertise for relief, but they treat neuropathies that are not chemo related.

There are two things that have brought some relief to my tired, achy feet.  (I’m a fan of Dr. Seuss, I can’t help myself:  I’ll call them Thing One and Thing Two!)  Thing One has been a very specific kind of New Balance tennis shoes, recommended by a podiatrist and physical therapist.  When I wear those, along with an orthotic insert and heavy socks, I can walk almost as much as I want to in any given day.  At the end of the day, I have very sore feet, but I haven’t had to stop doing what I want to do…as long as I have the shoes on.  Take them off, and I’m done.  Then comes Thing Two: a medication called gabapentin.  I take that at night, and it helps me make it through the night.  When I choose to ignore Thing One and/or Thing Two…I pay a price.  Wear “church shoes”, and I can make it for a couple of hours before I can no longer walk. (That’s not an exagerration…I have had to stop in my tracks more than once.)  Forget to take the meds—I awaken with sharp pains in my feet and legs.

Okay—sad story, but it’s not life-threatening, right?  My biggest concern has been that the pain, numbness, etc. would increase as time goes on, and thereby limit my life activities.  I’ve seen it happen to others.

About a month ago, a friend of mine who also has CIPN, told me about a treatment her son had found while doing research on the internet.  It’s called scrambler therapy, and is being widely used in Italy and Korea for CIPN, as well as other forms of chronic pain.  Mayo clinic researchers received grant dollars to further the research in the US, specific to CIPN, and much to my delight—I was accepted into the clinical trial!!  (I’ll include some links at the end of the post for those who would like to learn more.) I went to Mayo today for my initial intake, and ti find out whether I would be assigned to the treatment group or the control group.  I gave a yelp of joy when I found out I would receive the “real thing”.   As I’ve said many, many times in this blog:  Itzagodthing!!

I received my first treatment today!!  Essentially, electrodes are attached to my lower legs, and electrical impulses are sent to my nerves.  My nerves then talk to my brain, explaining to the brain that my feet no longer hurt!  The nerves get these 30 minutes of electrical messages for 5 days this week, and 5 days next week.  At the end of two weeks, 60-80% of the patients report at least a 50% decrease in their pain.   For some patients, the positive effects last for months, at which time one can come back for a tune-up.  It’s more complicated than this brief paragraph can cover, but for those who want more info, here are some good links.  The 3rd one is actually my favorite.  Down to earth, practical info!

http://www.mayo.edu/research/clinical-trials/cls-20199631?_ga=1.186171881.1187138416.1489458138

http://sharing.mayoclinic.org/discussion/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

http://www.healio.com/hematology-oncology/breast-cancer/news/online/%7B39fb0977-4c06-4d72-8c04-841b6e172bba%7D/mayo-clinic-researchers-test-scrambler-therapy-for-pain

Interestingly, neither my primary care physician nor my oncologist has ever heard of this treatment!  They are both anxiously awaiting to hear of my results!

If I am fortunate enough to be among those who find relief from my neuropathy pain,  I will be so very, very thankful.  If not…I’m not out anything except the time and mileage between St. Paul and Rochester (180 miles RT) for these 2 weeks.  Plus, if my experience can further the research to help others, all the better.

I am praying for success!  Please feel free to join me.  I will report again soon!

Another Doctor’s Appointment

Haven’t heard from me for awhile, right? That’s because “all is well”. Thankfully after today’s appointment with my oncologist, I can report that according to my blood work and my CT scan–all is well! In fact, so well that he doesn’t want to see me for 6+ months, which is the longest break I’ve had for over 2 years.

So…likely you will not hear from me (via this blog) until mid-April, when once again I hope to report that “all is well”!

Thanks for your care and concern!
Carolyn

Jim’s home!

Only a little over 24 hours following surgery, Jim was released from the hospital.  He passed all the tests and hurdles that they gave him, so they kicked him out!   He’s feeling good.  He has pain meds to take as needed, and he has a list of instructions to follow so that his healing goes smoothly.

Thank you so much for all the support that has come our way!  This may be a ‘routine’ surgery, but due to his long ordeal of 16 months of non-healing, it feels anything but routine.  We’re ready for a whole new ‘normal’!!

Carolyn

Jim’s surgery

Jim had hip surgery today at 1:00 and he’s doing great!  The doctor only had to replace the ‘cup’, and not the stem, so that was good.  He told me that he put in a larger cup than before, and he screwed it in so well that there’s no way it could possibly move!  He also did a couple other more technical things that should ensure a good recovery.

When I left his room this evening he was in good spirits and looking forward to getting on his feet as soon as possible.  Likely they’ll have him standing tonight yet, and walking tomorrow.  There’s a chance he’ll be able to come home tomorrow…or Friday at the latest.

We are so grateful that the surgery is now behind him, and he can focus on healing…and getting back to living life to the fullest!

Thanks for the many prayers and kind thoughts/words sent by so many of you!  We are very blessed to have such caring family and friends!

SUPER Great News!!

I used to have a saying that I used to say in the mornings when I first opened my eyes:  “I wonder what this day will bring for me.”  I loved that saying…but I haven’t used it for a long time.

Today at 9:12, Jim received a call from the University of MN hospitals saying that someone had cancelled out of their surgery on Friday…and he could take that spot if he wanted to!  Ummm…like he was going to think about that for a long time!!  He immediately said yes!  Then she said he needed to come to a pre-surgery ‘training’ that started at 10:00 today.  So, he quickly jumped into the car and headed for the U.

We were both elated!!

Then…at 1:18  he received another call.  Would he like to come on Wednesday instead, since they had another cancellation?  Again, there was an answer with no pause from Jim…Yes!  So, now he is scheduled at 1:00 on Wednesday.

As far as we are concerned, this is an answer to prayer!  We’re very hopeful that this will relieve him of the significant pain he has been experiencing…and hopefully will do so quickly!  It also allows him over 2 months to recuperate before we leave on our Alaska trip.

As Jim says…he’s excited, “and my wife is super excited”!!  But that’s the difference that’s been apparent between the two of us for 50 years!! Yes, tomorrow is the 50th anniversary of our first date…when Jim was excited to be going out with me….and I was super-excited!! 🙂

I think I’ll go back to starting my day with “I wonder what this day will bring for me.”  It’s a good thing to approach each day with a healthy amount of “wonder”!!

Thanks for prayers!!

Carolyn

One year out of treatment!

It’s been one year since I finished my chemotherapy.  At that time I weighed 97 pounds, and looked 97 years old!  A year later, I’ve gained pounds (not telling how many!), and have ‘lost’ a few decades in age!

I had my one year check-up this week.  All of my numbers looked so good that my doctor just sat and chatted with me for awhile.  He wanted to know about our upcoming trip to Alaska, etc.  It was a very “normal” visit–unlike any I’ve had for the past 4+ years.  Left me on a real high!!

I wish I could quit with that and say “all is well”, but the other half of the equation–namely Jim–is not doing so well.  His hip simply has not healed and finally the decision has been made to do another surgery to repair it.  He has tried physical therapy, chiropractic, crutches (4 months!), electronic stimulation (24/7 for 7 months!), and using a cane…and he still can’t walk without pain.  Very discouraging!!

He/We had hoped to get the surgery done soon after we returned from Arizona at the end of March.  No such luck!  The surgeon is booked until mid-June, but since we have a trip to Alaska all booked beginning June 30, that didn’t seem like a good idea.  So now he’s scheduled for July 30–over 3 months away!  Ugh!  He’ll have to take a megadose of painkillers with him on our trip!

So…this is sort of a good news/bad news update…but such is life.

Thanks for keeping up with us!

Carolyn

Addendum re: Jim

Selfishly focusing only on myself 😦     …I’ve been asked to give an update on Jim.

It’s been almost a year since Jim’s hip replacement surgery–Dec. 20, 2013.  He knew, even last winter, that his recuperation was going slowly.  All the time we were in AZ, while he was taking care of me, he continued to have some pain, and could walk only short distances before he had to stop.

When we got back in April, he went back to his surgeon…and was told he simply was healing more slowly than most.  Then his pain got worse throughout the summer.  Finally in August when he again returned to the surgeon, more scans were done and it was discovered that his bone has never grown to fuse with the new hip apparatus. (Insert many sad faces here!!)  This happens in 1/2 of 1% of cases, he was told.   This is one time you do NOT want to stand out from the crowd!

So–Jim was put on crutches to take the weight-bearing off of his hip, and he was fit with an electronic device that sends electronic signals through his hip bones to stimulate bone growth.  The device has been proven helpful in cases of bone breakage and fractures, but has not been tested much for hip replacement problems.  So, he’s a test case!

After nearly 3 months on crutches and getting ‘shocked’ 24 hrs/day, it MIGHT be working.  He has less pain, and is able to use a cane around the house.  He still uses crutches whenever he leaves the house.  He is dedicated to this effort, and wavers between hopeful…and less so at times!  He figures he’ll continue with the crutches and electronics at least until the end of January…and then hopes he’ll be able to work back to a normal way of walking again.

If none of this works…he’ll be back for another round of hip surgery when we return from Arizona in the Spring.  Prayers, please!

Yes…if you’re keeping track, Jim and I have taken turns taking care of each other ever since his heart surgery in May, 2013.  I guess this is what we promised each other back in 1967.  A break, however, would be welcome!

I LOVE Good News!!

It’s been two months since I last wrote a post.  I’m anxious to share some good news, and to give an update on a few things.

I had my regular oncology visit today—8 months following the end of treatment.  No scan was done this time—just blood work.  Everything looked great.  ALL IS WELL!!

Even though I feel great and have tons of energy, a visit to the oncologist brings out anxiety!  After all, I felt great 13 years ago when I was first diagnosed with lymphoma…and I felt great a year ago when diagnosed with colon cancer.  So, obviously “feeling great” is not a guarantee of optimal health!  It was wonderful news, once again, to hear that my ‘numbers’ are all good and I can go on my merry way for another 4 months.

The only down-side I am feeling is the stupid neuropathy!!  I’ve talked about this quite a bit in past posts…and it’s still hanging around, bugging me more than I’d like it to.  I had been doing acupuncture quite faithfully this fall, and indeed, when we left for Mexico in mid-October, my hands were much better, and my feet were improving.  That lasted until early November when the stinging and pain returned.  I returned to acupuncture after our trip, but it just wasn’t doing the trick, so for the past 2-3 weeks, I’ve become more discouraged about neuropathy being something I will need to learn to live with.

But…there may be two possible ‘lights’:  one is that colder weather tends to kick neuropathy into high gear with some people (and we have certainly experienced plenty of that already in Minnesota!!); and secondly, my doctor said today that he has had patients experience a higher level of pain as their nerves were healing…sort of the storm before the calm.  He still thinks it’s possible that the neuropathy could lighten or even go away in the next few months.  Boy, do I hope he is right!!

As for the “colder weather” idea—we are headed for Arizona on December 28, so I’ll give that theory a try for 3 months in warmer temps!

The other update I wanted to give is about Kay, my friend with brain cancer.  You may recall that no one expected her to continue to live this long, following her stroke earlier this fall.  But once again she is proving everyone wrong!  We’ve been to Fargo to see her several times in the past 6 weeks since returning from Mexico.  We could see quite an improvement upon our return.  She remains in the nursing home due to the amount of care that she needs.  But she is very alert, follows all conversations, and joins in when she can.  From all appearances she will not only celebrate Christmas once again with her family, but will also mark the 6th anniversary of the diagnosis of her brain cancer on January 1.  She is breathing rarified air by being one of what can only be a very few people who have lived this long with that same diagnosis of glioblastoma multiforme.

We will go to spend one more day with Kay and her family before we leave for AZ.  Uff—that will be tough!

And once again the ambivalence of joy and sadness rest deeply on my heart:  I am joyful for the news I received today…and I am so sad that my friend is no longer able to receive such joyful news for herself.

The season of Advent, and it’s theme of waiting in the darkness, is not lost on me in Kay’s situation.  Indeed, perhaps more than most of us, Kay awaits ‘in the darkness’ for her Savior to come.

May each of you have a blessed Christmas season!

~~Carolyn~~

Juxtaposition….with a Capital J!

The Juxtapositions of Life:

I’m often struck by situations in life that place us in parallel but seemingly opposing emotional responses to certain events.

I’m certain there are many people who can resonate with a time when a child was late—very late—in coming home.  The later he/she was, the angrier you were that they didn’t call…and the more frightened you were that something awful may have happened.  And then when they do show up…well…do you wring their neck, or hug them them hard?

Lately I’ve been thinking a lot about seemingly contradictory feelings that lie along side each other, and move in and out of my mind and actions quickly…while my body hardly moves at all!  Most pointedly, this has to do with our friend Kay.

We’ve been driving to Fargo weekly to see Kay.  Two to three weeks ago we were quite certain that we were experiencing her last days.  She had a stroke and was responding very little to her surroundings.  But even as our hearts were heavy, we (Darrell, daughters Sara and Tessa, friends Ron & Cindy) went out for pizza and laughed together.  More than once the question popped into my mind—“how can we do this…laugh in the midst of such great impending loss?”  It doesn’t seem to make sense.

And yet it does—it’s our frail, human way of coping…the one way our minds know how to find some balance between the heaviness of grieving and the balm and healing that comes from bonding with others through laughter.  If we didn’t engage in the laughter part of this equation, the heaviness would draw us far too deeply into the darkness of grief and depression.

We just returned from spending the day with Kay.  She’s now in a nursing home where they can provide the kind of continual care that she needs.  Fortunately she has rallied, and is able to respond with a few words when we speak to her.  She’s very aware of what is going on around her, and enjoys just sitting in her wheelchair and listening to the chatter of her family and friends.  At one point today there were 10 of us in the visitor’s room—Kay & Darrell, Tessa and Jon, Ron, Cindy, and Kristi, Cindy’s sister Carolyn, and Jim and me.  The chatter, the bantering, the laughing, the reminiscing…brought smiles to all of us, including Kay.

And then it came time to say goodbye.  Uff!

I put my cheek against Kay’s cheek, and I sang “God Be with you till we Meet again”  I only sang a little bit of it…that’s all I could do.  I glanced back at her as we walked down the hall…wondering…

And here’s the biggest juxtaposition for me right now:  On Tuesday we leave for Mexico on a trip that has been planned for over a year…before Jim’s heart and hip surgery, before my cancer diagnosis.  You see, it takes that long to find a date when 9 of us can clear our calendars to spend 5-6 days together!  Our whole family is going to Cancun!  I presented this idea to everyone sometime in early 2013, with the idea of doing this for Jim’s 70th birthday, which was in March, 2014.  The date that finally worked for all of us is now…and so much has happened since we set that date!

As any parent knows, having the entire family together is a little like High Holy Days!  It’s a BIG DEAL!  It’s precious time, and reason to celebrate!  I’m excited!!   And we have much to celebrate!!

Jim and I have been going to Mexico just about every year since 1995.  This is our 18th trip.  We’re staying a total of 18 days—having our own vacation after the kids leave.

Well…you get the picture, right?  I’m deeply grieving the impending loss of my good friend….and I’m giddily excited about having my family together on the beaches of Cancun.  Juxtaposition with a capital J…Ambivalence with a capital A!

But life presents us all with a plethora of these conflicting ‘opportunities’, does it not?  We get lots of practice in bouncing around between sadness and joy, anger and relief, fear and excitement, tears and laughter.

So…as I glanced back at Kay today, I prayed that I will have another opportunity to visit her upon our return. We come back November 1…or sooner if we get a call letting us know that there is no more opportunity to visit.

I pray that we don’t get that call…that I get another chance to sing to Kay…that we have another opportunity to chatter lightly, to laugh together in her presence.

And in the meantime…I’m off to Mexico to celebrate life with my family.

Juxtaposition…with a capital J!