Hospital Update: the October edition (no more Dexies)

A Quick Catch-Up:  Since his last scheduled hospital appointment, (when he reported new chest / rib pain) FL has been laid low with a lung infection.  Two weeks later, when he reluctantly dragged himself to the doctor, his GP called an ambulance. He spent one night in the Respiratory Ward with suspected pneumonia on intravenous antibiotics and an oxygen mask, before getting himself sent home for good behaviour.  But he still isn't well.  Nothing like it.  He went back to the GP on Friday for his usual blood tests and came home with another prescription for antibiotics.  On Friday night and Saturday he was complaining about pain in his heart/ lung / chest / rib area and started taking Paracetamol at the maximum recommended dose.  Until the painkillers kicked in, he was telling me he was ready to give up.  This is not FL-like talk!  This is bad!

Friday was a bad day altogether.  His car broke down on the way to the doctor (in town A) and he had to tie the power steering fluid hose up with a shoe-lace to get it to the garage.  At the same time, the school rang him to say that The Girl had burned her arm and needed to go to the Health Centre (in town B) to have it dressed, could he come? Luckily, he didn't have his hearing aid in, so shouted "Pardon?" at them until they gave up and rang me instead (in town C).  Yes, I know -we need to change the "first point of contact" number on the school database - urgently!

On Saturday, I felt like a zombie, with a heavy cold and a migraine.  Some fool overtook me driving up a notorious steep blind summit and nearly got us all killed.  I drove home very slowly and curled up on the sofa with a blankie while FL popped pills.  What a fun family!  Luckily The Girl was at a school friend's birthday outing, so missed the worst of us.

On Sunday I made a skirt and FL read and slept. On Monday I went to work as usual and FL read and slept.

So... here we are on Tuesday, with the regular monthly haematology appointment.

Facts and Figures:
September Freelite results:  Kappa 190; Lamda 10.2; Ratio 18.7
(July results were:  Derived Kappa 257; Ratio 39)
Despite these results being reports of slightly different things (because we saw a different doctor) the overall indication is good, and the Doctor says she considers that FL's Myeloma is "stable".

However....

In July, his immunoglobulin scores were a reason for concern:  IGg was 3.02 (normal range is 6 to 16) and IGa was 0.54 (normal range is 0.8 to 4).  Why we are only hearing about this in October is a question neither of us asked.

The Consultant had left a note on his file that she was going to do some research before deciding whether or not to continue treatment.  However, the results of this research were NOT on the file, and the Consultant was not in the hospital today to, um, consult.

So the Doctor we saw made the decision to prescribe Revlimid (Lenalidomide) without Dexamethasone (steroids) to give his immune system a chance to recover from its recent battering (pneumonia).  Her concern was that otherwise he might need monthly blood transfusions to keep his immune system going and that the myeloma treatment including steroids was making him too weak.  As it was, she had to do some statistical juggling to authorise the Revlimid today because his numbers were on the borderline of acceptable to allow the prescription.

They are sending his blood off for another Freelite test today and are also checking his serum immunoglobulins.  Results available in a month.

So what are we thinking?

It feels like a "safe" decision.  There is no point in killing the Myeloma while killing FL at the same time.  Rather than witholding all treatment, they are taking a middle path, by removing his beloved dexies and leaving him on Revlimid, with another review in a month's time.  In the meantime, he needs to avoid further infection and take it easy... ROFL, as the kids might say.

It will be interesting to see how he feels without dexies.  He has become reliant on his sudden energy burst on a Wednesday / Thursday to "get things done".  I am hopeful that a more even speed will improve his (our) overall quality of life - personally I dread dexy day when he can be hard to reason with and prone to wild plans and projects, prowling around the house all night, then crashing with exhaustion the next day.

We are definitely entering a new phase, which I would describe as a "quiet life" together.  This is absolutely not FL's style, so I predict some difficult conversations along the lines of : "What are you doing with a sick old man like me?"  My only answer is "I am loving you, stupid.  Now shut up and go to sleep."   ; )