Curl.

Today, Monday, June 3rd was our appointment at Mayo Clinic in Jacksonville, FL with Dr. Vivek Roy for a consultation about my relapse, once again, of Myeloma.  We decided to go to Jacksonville the night before since my appointment was at 8:15 AM.  And you all know I am not a morning person.

The hotel we chose to stay at was right on the campus.  Courtyard by Marriot.  Once we checked in, we started to look for a place to eat.  I was craving crab legs.  Finally found a place called The Juicy Crab about 5 miles away.  OMG.  I was in heaven.  A pound of crab legs, potatoes and corn on the cob done in a boil.  Bill got a pound of shrimp, potatoes and corn on the cob also done in a boil.  (Made me think of Bob Curwood and his boils he made. So yummy).  They had several seasonings to pick from along with the choice of spice level.  The meals come out on metal plates in a bubble wrap of plastic. Eat it out of the bag or pour it on the plate.  Bag for a bit and then poured on the plate.  Such great food.  Now the place, well let me just say it could have been a bit cleaner.  That's all I will say.

We were up at 5 this morning to get ready for our appointment and have time for breakfast as well.  My breakfast was great.  Can't go wrong with a bacon sandwich on an English muffin.  Bill's not so good.  Tried egg whites.  Wasn't a fan of them.  Ate, packed and off to the Mayo building just up the road.   We registered on the first floor and was then sent to the 3rd floor to wait for our appointment with the doctor, Dr. Roy.

Dr. Roy came in the room and after introducing himself, started reading the info sent by Dr. Sarriera's office asking me questions along the way.  Once he was finished reviewing the info and asking a few questions, he told us that the Myeloma I had was very unusual.  Usually it's not so localized and would be in several spots throughout my body.  Mine is only the lump on my head that has filled in what I called my crater from the original lump 3 years ago.  I did asked him if the lump was Myeloma to which he answered yes.  He discussed a few other drugs that are possibilities for me.  Then Dr. Roy told us he recommended the following options:
1.  Surgery followed by radiation  - would have to see a neurosurgeon whether at Mayo or UF Health Cancer Center
2.  Radiation only - not so sure would be effective as this a large tumor - told him we have already seen a radiologist
3.  Clinical trials - at this time, I do not qualify for any - my labs are basically all good - will keep my info and if a trial becomes available, will make sure we get a call
4.  Continue with the Panobinostate, Kyprolis and Dex for at least another 3 months - Panobinostat at yet another reduced dosage

He concluded that his recommendation would be option 4 at this time.  Said I need to give it a chance to work.  I am very willing to do that if we can get the Panobinostat to not cause certain side effects.  One being low platelets.  He then ordered some labs to be drawn before we left the Clinic.  Dr. Roy said to think about all the options whether they be at Mayo or UF Health Cancer Center, he was there to be of help.  Done with our appointment and on to get labs drawn.  Then ready to head home but we actually saw someone we knew.  Mike and Lori.  Members of our support group.  Haven't seen them for a while.  Mike is the Myeloma patient.  He did a trial with Darzalex and now is in remission.  Was to have a bone marrow transplant.  Even harvested his cells.  No transplant for now.  Said he feels pretty good.  We were very happy to hear this.  Talked for at least an hour.

Now need to let Dr. Sarriera know what Dr. Roy said.  Already sent an emailed Ana, his oncology nurse, all the info.  Dr. Roy added his clinical notes to my Mayo portal which I will get a copy to Ana.

My platelets came back at 53 and my bilirubin was 1.7 from the lab draw Dr. Roy had done today.  Will see if I get chemo tomorrow.

We decided to take the long scenic way home via A1A.  Beautiful, beautiful ocean, dunes, homes.  Made me want to rent a place along the ocean for a few days.  

There are several commercials we hate hearing.  Liberty, liberty, liberty is one that I dislike.  But the one that Bill dislikes the most is one where a man is talking about dentures and he says he was able to eat corn on the cob and it made his toes curl.  Really stupid.

Quote:

It is easy to forgot how precious it is to be alive.