Update on David

Thursday November 1, 2012
Moffitt Cancer Center
Tampa Florida

 

Because folks have been asking about David’s doctor visits and they have just been completed, this post is only about that.  I’ll post another tomorrow about what else we’ve done since leaving the farm.

 

We have been staying at my father’s house for 12 days.  During that time we’ve been to the hospital three times.  David has had three doctor visits.  Two planned and one unplanned.

The first visit was on Thursday October 25th to have all his detailed blood work done as well as a bone scan.  This is his three month post transplant work up.

The following Saturday night during dinner he chipped another tooth. 
Because the likely follow up treatment for people with his high risk myeloma will include zometa infusions, this dental work had to be dealt with immediately.  You are not permitted to have dental work while you are on zometa because of the risk of Osteonecrosis Of The Jaw. 

The following Monday morning we met with his hematologist to discuss the results of the blood tests and luckily when he called the dentist they could fit him in later on Monday afternoon.

The blood tests showed everything was normal other than his M-spike, the main blood marker for multiple myeloma.  A normal person’s M-spike is 0.  Before his initial pre transplant treatment, David’s was 5.3.  After the treatment but before the transplant it had dropped to .3.   Everyone was hoping for complete remission with the induction treatment and an M-spike of zero.  When that didn’t happen the transplant went forward.  Now after transplant all other markers of myeloma including the urine are clear but his m-spike remains at .2 indicating the continued presence of disease.

So he will be taking a significantly reduced daily 10 mg dose of the targeted therapy revlimid which he was on in his original treatment at 25 mg a day.  It is an immuno modulatory agent that works by inducing a patient’s immune system to attack and destroy myeloma cells.  Other than the cost, this is not a problem to our life style as we can have it delivered by mail anywhere in the country.

But the second part of the follow up is a problem.  He will have to have monthly zometa infusions which we are told must be done at one of his hematologist’s offices.  He has a hematologist in Florida and one in Virginia.  So at first look it appears that his travels won’t be able to be very far away from either of them.

We are not very happy with this turn of events and David thinks there must be some way to get zometa “on the road” but his doctors think otherwise.

Their goal they say is to enable you to maintain your quality of life for as long as they can.  But they have never met anyone whose quality of life depended on having a home on wheels free to go anywhere he wanted to go.

After this news, we went on to the dentist who was able to fix his tooth.  What a great day, doctors in the morning and in the afternoon.

Today  we meet with his Transplant Doctor at Moffitt who also reviews his results and confirms all of his hematologist’s findings and follow up therapy.  She also set up his first set of vaccinations to replenish his immune system.   Remember those things you got from birth through age 6.  Well he has to do them all over again.  These will go on for two years at 3 mos, 6 mos, 9 mos, 12 mos, 18 mos and 24 mos.   These he might be able to get from a hematologist on the road although most doctors will not take you as a patient without an “initial visit”.  Those are costly and we doubt the insurance will pay for more than two different hematologists.

So off he goes to the infusion center for the vaccinations and the first monthly infusion of zometa.

That’s the story to date.  Investigating whether there is a way around this limitation is just another thing added to our very full plate.  At this point I am feeling that our decision not to sell the farm “yet” was prescience.

And then we do something fun. FINALLY.   We stop on the way home for some of the best pizza we’ve ever had at Super Sardo’s in Largo Florida.   If you are in the area, don’t miss it!  And don’t miss Santo Sardo.  Read the About Us on his the website and you’ll make a special trip just to eat the delicious food and be insulted!