WaWa

Well its been awhile since I have blogged. A lot has happened during that time frame. I continued taking the Selinexnor off and on for several weeks.  This drug made me nauseous, had no appetite, and in bed all day.  No quality of life.  Had to have fluid drip several times.  Had a pharmacist, Cassie, assigned to my case.  Had to have labs drawn and she decided if I was to take the Selinexor.  She and Dr. Sarriera decreased the dosage from 160 mg to 100 mg.  Still the same side effects.  I couldn't stand  the "no quality of life".  Was taken off Selinexor.  Pet scan February 6th. I have been chemo free since February 11th, my appointment with Dr. Sarriera.  An appointment Bill and I knew we would be hearing what we didn't want to hear.  There are no more drugs for me to take.  This has us very scared.  I am done with treatments.  NO MORE DRUGS FOR ME.  I have depleted them.  Done.  Can't repeat some of them because I progressed while on them.   Had Myeloma labs drawn.  My M-spike is still 0.

 My Lambda Free Light Chain has increased to 35.4   - 0.5700-2.63 are the normal range markers. I am way above that.  Last lab draw in December was 20.2. Really showed an increase in Feb to 35.4. Jan was 10.3.  Lambda light chain keeps increasing.  So the drugs I was on were not working.

We, through tears, asked Dr. Sarriera what was next if no drugs.  Best thing would be a clinical trial.  My problem is I do not have the markers they are looking for to be eligible for a trial.  Dr. Sarriera is thinking since my Lambda light chain is increasing, this may qualify me for a trial if one could be found.  So we are praying for a trial.  He would reach out to Moffiit, in Tampa, to set me up with an appointment with a Myeloma specialist.  This has been done and I have an appointment on the 23rd of March.  When Moffitt called to set up an appointment, they had not received my medical records of yet.  I was told once they received my records, they could see if they could get me in sooner.   Also, Dr. Sarriera wants me to see a pain management doctor.  May not need it so much now but may need later.  That appointment is set for March 5th.  Sarriera prescribe a pill to take for the tenderness around the head lesions.  I need to go to the cancer center to pick it up.

Another suggestion was for me to go in the hospital and they would give me a high dose of chemo. This chemo treatment is like the one I had during my transplant.  Be very, sick, lose my hair are some of the side effects.  This, Dr. Sarriera, says may cause me not to be able to qualify for a trial.  So that is on hold for now.  We are hoping and praying the appointment on the 23rd sheds a new light on our situation.

Also, on top of all this, I got a sinus infection.  Was doctoring between Dr. Sarriera and my family doctor.  Chest X-ray (lungs clear), antibiotics, breathing treatment, a $100 inhaler but I finally think I kicked it.

So right now I am very scared.  Scared because I am not on a treatment plan.  Scared because I have several lumps on my head.  Scared because around some of these lesions/lumps, it is very tender to the touch.  Scared because I can feel drawing and pulling around these lumps.  Scared because my pet scan showed new tumors in my legs on my tibia. Scared because I am just scared.  

Bill and I finally went to a WaWa, first time ever.    Stopped for gas.  It reminded me of Sheetz even though I didn't go inside.

Quote:

Go ahead and scream, go ahead and cry but never give up.  Cancer sucks!