JULY, 2016

I have been waiting, for the past three months, to be able to write that we have overcome, beaten, destroyed and killed the cancer. That is not the case. I liken it to one of those huge ocean liners heading full tilt in one direction and then needing to change course in the opposite direction. It takes time to turn the ship around and it takes time to stop the devastation of the cancer in Bob's body.

The daratumumab and the dex held the line for two months. The blood numbers that are followed as markers did not show any increases in the cancer but neither did the numbers show great gains in defeating the cancer. A month ago Dr. Bahlis decided to add the chemo drug Pomalyst to Bob's regime. This is a drug that he takes every day for three weeks and has one week off of it. Bob failed this drug---it had lost it's effectiveness after a time. The cancer pharmacy did not want to allow Bob to have it because it had failed. HOWEVER Dr. Bahlis made it plain that this is a totally different protocol using it with the daratmumab. It was explained to us thus: the daratumumab attaches to the cancer cells so that Bob's own immune system will then be able to find the cancer and kill those cells. This can be slow for several reasons in Bob's case. The pomalyst is more like an atomic bomb. The drug goes in and kills lots of cells at one time and hopefully diminishing the cancer cells. Working together these two drugs should move along the death knell of cancer cells more quickly.

Bob has now completed month 1 of 4 of every other week of dararumumab and dex. He has also completed month 1 of using the pomalyst. We have gone from feeling defeated to having a true sense of hope.

In June Kappa Free-----192. in July Kappa Free---33.10

Lambda Free---1.35 Lambda Free--5.42

Ratio-----------142.22 Ratio------------6.11

The accepted ratio (on our print out) should be 0.26-1.65

So we are doing the hAPpy dAnCE.

This joy comes at a cost to Bob's body as every drug has side affects. Knowing, once again, that most of Bob's physical struggles are resulting from the chemo gives us a renewed hope. As tough and often debilitating the side affects are, for now ,we know that the cancer is not in the organs wrecking havoc. Some of the symptoms can be handled by tweaking the chemo (which was done today) or tweaking the drugs that counteract the side affects. The pain from the damage to bones done by the cancer is under control. All in all we are figuring things out.

Bob and I have been on this journey a full eight years now. That is a lot of time and energy invested!!!! Makes me think waaaay back to when Bob proposed to me. He thought he had invested enough money on hamburgers at the A&W that he couldn't afford not to marry me. Those were the days of the car hops and no seat belts-- so romantic!!! How did we ever survive?

We are surviving dealing with cancer. More than surviving---conquerors because of Jesus. The hope we have for His best and ultimately eternal life.

1Peter 1:3 "All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus from the dead."

                     

THE PLAN

Today made us realize that when one has a plan, one needs to be sure that everyone involved in the plan, is on the same page, and following the same map.  I suppose it is also important that details are explained so that those who are not creating the plan, have a real sense of  what the brainstorming means.
All that to say Bob and I were going down a different trail from what the doctors were planning.  The treatment Bob is taking is NOT  Car t cell therapy as I had earlier told y'all.  This treatment has been proven for lymphoma but alas not near ready for multiple myeloma.

The treatment Bob is on is DARATUMUMAB which you can check out online if you are so inclined.  I am sure that we hadn't heard that word before.
The brand name drug being used is darzalex
Daratumumab (Darzalex) is an anti-cancer drug. It binds to CD38.^[1]Daratumumab was originally developed by Genmab, but it is now being jointly developed by Genmab along with the Johnson & Johnson subsidiary Janssen Biotech, which acquired worldwide commercialization rights to the drug from Genmab.^[2]

Multiple myeloma cells uniformly overexpress CD38. We studied daratumumab, a CD38-targeting, human IgG1κ monoclonal antibody.

In step with the darzalex Bob also needs to take a lower dose of dex.  Depending on results other chemo drugs may be added. In our heads we were hoping for no more chemo drugs.  Alas this is not the cure we thought it could be however there is always HOPE and it may be yet.  This dazalex was approved for use in Canada in Dec. 2015.  Our doctors are really pumped about it.  Success is pegged at 35-40%.  Pray with us that this will be successful for Bob.

This is a long haul treatment. All the treatments are in hospital with the lab work done a couple of days prior.  Once a week for 2mo. then every other week for 4mo. and then depending on results once a month.  It is actually very doable.    

Exploron Corp had extended Bob a short term disability which at Bob's age is unbelievable.  Dr. Bahlis filled out the forms today and put down that the term would be until Dec.  That is totally not reasonable for the company.  We are waiting to see what HR has to say and what the future holds with them.   

We have thought a lot about how today turned out.  It was not how we had imagined,misheard, or thought it was going to be.  We do know that God has cared for so many details in these past years that He will also walk with us and give direction for the future.

I am sorry that I got lead away on a rabbit trail and gave everyone wrong info. There is hope on the horizon and cures for cancer.  It will come and we are proud to say that Bob is part of that hunt.

The first week begins tomorrow April 21.  The first infusion time will be 10 hours (lunch is packed). 

"TRUST ME,I HAVE A PLAN"

"Trust me, I have a plan" were pretty much the last words we heard from Dr. Bahlis on Mar.9.

We also read those words or words that are very similar in the bible.  Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future."  Jeremiah was speaking to the Israelite people who were in exile and it appeared to these Israelites that God had forgotten them.  However, God's word is for us now in 2016 too.  Bob and I trust Dr. Bahlis but more importantly we trust our Father God who has cared for Bob in some pretty incredible ways over the years.  These almost eight years of fighting multiple myeloma have been hard, discouraging and painful.  Yet we trust God with the future.

All that being said, the stem cell transplant most definitely has not worked.  The cancer markers are climbing quickly.  As I have said before, Bob does not have over the top high numbers, right since the time he was diagnosed.  The difference is that they are now going up fast.  Dr. Bahlis pointed out to us that many blood numbers were very good:  WBC 5.7, RBC 3.4, platelets113, neutrophils 113.  However the kappa free is 173 now, lambda free 3.45 making the ratio 50.14.  Which would be ok if the stem cell transplant and all that drama wasn't only 6 mo ago.

Unfortunately, There are not a lot of options left as most of the known treatments for multiple myeloma,  Bob has now failed.  The medical researches are always working and looking for that hope---something new to help patients.  Sooooo beginning on Mar.11 Bob will begin a new chemo regime---well, not actually new, it is a rerun.  This is more potent than what he is doing now.  Along with the velcade, being added are dexamethasone, and cyclophosphamide.  This will be the regime for two rounds for sure----three weeks of drugs, one week off.   Hopefully this will keep the cancer in check somewhat. THEN THE EXCITING AND SCARY AND ANOTHER REASON TO PRAY   EVENT.

By this time Dr. Bahlis will know if Bob has been accepted for a very experimental treatment.  The doctor is applying for this treatment on compassionate grounds.  There are also, two other of Dr. Bahlis' patients, who this treatment, is being applied for.  This procedure has the potential to be a cure for multiple myeloma.  If not now, sometime in the future.  Should you want to check it out google:   car  t  .

So we cling to the trust we have and for future hope that we know is there.  Pray with us for wisdom, physical well being, beyond what could be hoped for, for Bob, peace and grace and hope.

ECCLESIASTES

Every other Thursday a group of ladies get together to study a book in the Bible.  We did Ephesians before Christmas and tomorrow we are beginning a study of Ecclesiastes.  There is not a study guide.  We read and research and then discuss what we learned, how we can apply what is in scripture to our lives. Tomorrow we will be going over the first three chapters.  Soooo being an eager beaver I started to do my studying today!!!

Part way through the day Bob came home to pick me up.  Bob had his monthly appointment with Dr. Bahlis, his oncologist.  I drove over to the cancer centre as Bob is so tired.  He has not been sleeping well.  Trying to figure out why- covers so much of a person's psyche (which I am taking to mean; ones whole self) that we cant figure it out.  Maybe this visit will help deal with the sleeplessness.
Bob has also gone back to work.  It is full time with 3 days out at the estate and 2 days doing computer work or pick ups in the city.  So not sleeping is having an impact on him.

Our visit did not go as well as we expected.  The numbers used as the cancer markers are coming up-- rather quickly.  This means there is cancer in the bone marrow and it is active.  In Oct. the Kappa Free was 9.04,by Dec.14 it was 16.5 and Jan.11 blood work showed it at 30.8.  The ratio is 3.79.  We had chosen for Bob to have chemo every other week due to the side affects.  Dr. Bahlis has a couple of things to try but doesn't want to change more that one thing at a time.  So starting on Fri. the 15th Bob will have chemo every week.  So we will see what happens by our Feb. appointment.  Bob's blood work is not where it should be either.  This is very discouraging, disappointing and just plain frightening.  To deal with sleeping, well guess what? a sleeping pill.  Bob does not have to use them everyday but we will start tomorrow when he doesn't have to get up and go to work the next day.

The pain Bob has is controlled reasonably well by the drug patches he is now using.  We are grateful for that.

So does this blog sound like a bit of a downer?  In a way it was meant to.  I wrote in my study notebook  this morning that Solomon sure wrote a downer in the book of Ecclesiastes.  This wise man writes that all things in and done and possessed in the world is for naught---all nothingness.  Chasing after the wind!!!!   So on our way home I began to think what is this constant struggle with cancer for?  Perplexing all these thoughts.  I began thinking this morning surly Solomon must come to a different conclusion somewhere in the book so I turned to the last chapter to take a peek: "Fear God and keep His commandments for this is the whole duty of man.".  

Knowing Jesus and following Him gives us purpose and hope.  The hope of living forever with Jesus in heaven, where we will be perfect and there will be no cancer.  While we are still on this earth we will live to bring glory to Jesus and reflect Him to those around us.

BITS AND PIECES

We made the last oncologist visit of the year!!!

 Bob still has one chemo left---- on new year's eve.  He had one today and is hanging in pretty well, not feeling unwell yet.

The chemo has been changed to once every other week.  The blood numbers came up very well by not having chemo every week.

There is still no sign of any active myeloma in the marrow.  PTL

We have complained about Bob's pain in the hip (actually on the back of the pelvis) so much that I am sure everyone is tired of it!!!!!  It still was not under control and he was becoming more sleepy and disorientated.  Fortunately, when the oncology nurse came to call him into the appointment-- Bob was sleeping.  I think she realized that yes this was not good.  How does one have a life?

Bob has been changed to another drug, in patch form, to handle the pain.  The patch is to last 72 hours so we will see.  He needed to take a break through 5mg morphine this am but otherwise it is all good.  He feels better!!!
This can be tweaked a fair bit before it is not effective.  Looking way better.  Next stop would be the pain clinic.

January 4, 2016 Bob is back to work.  Still on the old schedule--some days at the estate and some days in the city.  We were getting the hang of being full time together-- and no other work.  I will miss Bob but this will be very good for him.  We will see how he makes out.  Praying he will be able to physically and mentally manage the drive, the full day and the work.

Almost time to close the door on 2015.  This has not been our best year, but it has been a great year in terms of stretching our faith and trusting God, so for that we are thankful.

Merry Christmas, enjoy the time with whomever you get to spend Christmas with.  The movie Robin Williams was in......can't for the life of me remember the name of it......but the slogan was carpe  diem----seize the day.   We are trying to seize each day with only the positive of the day and letting the negative just collapse upon itself. 

 Our wishes, for calmness and much joy for the Season, to each of you.

DAY 100

Today is day 100, post transplant.  This marks the end of the early recovery phase of Bob's care. Not sure how to celebrate this day!!!!  In school they have day 100----100 days of school.  Each child brings 100 items of something----lots of counting involved (which is the whole point, duh).  So I asked Bob what will you bring to 100 day post transplant???  Let's sing this list to the tune of a Partridge in a Pear Tree:  100 blood tests,  100 doctor visits, 100 chemo injections, 100 visits to the drugstore, 100 trips to Tom Baker,        1 million pills swallowed,???? (1 million ! oh Bob!!!! that is 10,000 x 100)  and 1 amazing oncologist....................  

Bob is doing well.  He is tired but kicking the tiredness the best he can.  We (shhhh don't tell the nurses) are playing with the morphine and almost have the recipe for pain control.  Bob has each measurement of morphine--3mg, 6mg,of hydro morphine then 5mg of regular??morphine.  We are keeping track of what allows him to be pain free come the morning and then keeps him free all day.  We think we have it!!!!!  That will be the biggest accomplishment for now.

Bob has had 3 injections of velcade so far and has one more before we see Dr. Bahlis.  There are no steroids along with the velcade so the blood tests Bob takes for diabetes are staying normal.  PTL--all below 10 and most below 8.  We are so thankful for that.  The day after the velcade (today) is a lousy day for Bob --just not feeling well plus a sense of not being able to get his breath.  This is only for one day.  Thankful for that too.  His blood counts are falling though.  The major number is for the neutrophils.  Should this fall below the magic number he may not be given the velcade.    We are thinking that perhaps it would be good to go through the Christmas week without the chemo as it is now scheduled for both Christmas Eve and New Years eve.  The "normal" numbers for the neutrophils are between 2.0 and 8.0.  Bob started the velcade with a count over 7., last week was 2.5 and this week we are down to 1.9.  WBC is now 4.7, HGB is 112, Platelets 88.  So we shall see what happens, but Bob may need a break to recover some more.

As life stands today Bob is going to go back to work come January.  He is planning for 3 days at the estate and 2 days in the city.  He is able to take time needed for blood work, appointments and chemo.  We are so thankful to God for Exploron Corp. and how they have cared for Bob.  Bob loves his job and is now working for the benefits!!!! !Plus his salary!!!!!

Enjoy this advent season with all the busyness and excitement. 

 Jesus is the reason for the season.

ONWARD

We were back to seeing Dr. Bahlis and Dr. Neri at their regular clinic, yesterday.  Bob was the last patient yesterday so we turned out the lights just before 6:00pm.  We hadn't seen Dr. Neri for months so it was great seeing her.  They are both so pleased, for Bob, with the results of the transplant.

The last paragraph of the Diagnostic Radiology report for the PET  scan is:

Impression  
1.  No sites of adverse change/disease progression can be identified.  No abnormality has appeared at the right hip itself to explain his symptoms.

2.  At sites of residual active disease in the right illium and the L 1 spinous process, metabolic activity has further decreased mildly, compatible with a favorable response to interval therapy that appears near-complete in the right illum and partial at L 1.

3.  The lesion in the right hemimandible, that was new on the prior study 2015-05-06, has demonstrated a favorable response to therapy that appears to be a complete metabolic response.

4.  A complete metabolic response to therapy has been maintained at several other bony sites such as the C3 vertebral body, the left second and fourth ribs, in the T9 region and the left ischium.

This whole report is now our new base line.  The cancer has sure been active in Bob's bones, these past years.
Numbers:  neutrophils-----4.6,  WBC---7.4,   RBC--3.4,  HGB--111.  Kappa/ Lambda free ratio--1.09.

From that we are taking Bob as in remission.  Not cancer free but in a good place.

The new plan will begin this Friday the 20th of Nov.  Bob is going to receive weekly injections of Velcade, a chemo drug,  This is administered under the skin in the belly.  When Bob received velcade before it was IV.  Still no talk of a steroid (hurrah).  Bob needs to go to the hospital for this.  We are guessing it must be terribly expensive because patients are not given syringes to administer the velcade at home. 

As for the pain, Bob now has a different morphine to try.  Keeping the pain controlled is still up and down.

Thankful for the prayers of so many.  The ongoing prayer of our hearts is that this remission will last a very long time.  Please pray with us.

For this time:  "Just the facts ma"am, just the facts".     Know who said that??????  hmmm??