Lightning

Wow, the crepe myrtles are in full bloom. Whites, reds, pinks, purples.  A lot of the medians of the roads we travel are loaded with them.  Michelle and Gery have a white one that waves to us in the wind.  Hope they are in bloom when Sandy and Denny come down.  Ours that Sandy and Denny got us, bloomed last year but not seeing much yet this year.  Beautiful, beautiful!

Had a few side effects from the chemo pill Panobinostat.  First, I had edema.  My feet, ankles and legs swelled up like mini balloons.   Soaked them in Epsom salts and then applied Juniper oil with coconut oil.  This lasted a few days.  Then had GI problems.  Not good.  Then my platelets dropped and Dr. Sarriera took me off the Panobinostat.  He then dropped the dosage for me to start again.  Started the treatment again.  Some thing happened and was taken off the Panobinostat again.  Platelets dropping is not a good thing.

Back on the Panobinostat treatment plan once again.  Had my Kyprolis drip on Tuesday along with my Dex and  Kyprolis again on Wednesday.  Took my first Panobinostat on Tuesday.  Took my second on today, Thursday, June 20th.  Then I will take one on Saturday, June 22.  Have a few days off and then start again on Tuesday, June 25th.  Will have labs drawn on Tuesday to see what my  platelets will be.  Will go from there.

Today, June 20th, we had our appointment with Dr. Sarriera.  He came in without his usual smile and started talking about my visit with Dr. Roy.  We discussed the 4 options Dr. Roy had suggested for me to do.
1.  Surgery with possible radiation afterwards
2.  Radiation only
3.  Clinical trials
4.  Continue with Panobinostat treatment plan

There are not any clinical trails that I can do because mostly all my labs are good.  I wouldn't meet the markers they look for to put in a trial.

I asked Dr. Sarriera which way he would go.  He said the Panobinostat would be the way to go again if I can control the side effects.  We have not even completed two weeks with it to see any results.  I asked him if that would shrink the lump on my head.  Again, since we haven't completed a full treatment plan of the Panobinostat, there is no way of knowing.  Radiation only was then discussed.  He said we know it would probably shrink the tumor only to have another one pop up like the last time.  Wasn't even done a full treatment and one popped up.  They can only target the area where the tumor is. We had an appointment with Dr. Nanda, radiation oncology, and he examined the tumor and said they could do treatment on this area.  And oh, he was amazed at my hair.  Was bald the last time I saw him.

And then surgery.  He recommend that I see a neurosurgeon to discuss possible surgery to remove the lump.  I asked him if the lump was in between my skull and the skin on my head.  He wasn't sure but wants me to have a MRI of the brain to be sure what we are dealing with before I see the neurosurgeon.  This was the option Dr. Sarriera favored.  I told him I just want it to go away.  Almost 3 years and the lump reappears in the same place it was when I started???  The decision of the radiation only or surgery will be one Bill and I will decide once all appointments are over.   No matter which one we choose, Dr. Sarriera has two chemo drugs he will try once surgery or radiation is complete if I can't tolerate the Panobinostat.  Both of these will have me shave my head once again.  Something I don't want to think about now.

Dr. Sarriera examined the tumor taking measurements.  I forgot to ask him what they were so I could compare to the last time it was measured.  I told him there were several sore spots and I can fell it "drawing" and pulling.  And at times. it hurts.  Told him I afraid it is growing downward in my head area and not on top where I can feel it.

We discussed some of my lab results from my Mayo appointment.  The main one was IgE.  IgE is a type of antibody for your immune system.  This was a measurement that was important during my time at Moffitt.  It was blown of the chart so far that they couldn't even measure it at the start.    Before I left Moffitt it was down to 450.  214 is normal.  Right now it's 45,000.  This will now added to the Myeloma lab draws.  In rare cases, a high level of IgE means Multiple Myeloma somewhere in the blood.  Of course, I would be one with this problem.  IgE has an essential role in allergic reactions causing sinusitis, asthma, food allergies;. symptoms that show up in the nose, lungs, throat or on the skin.

I left with tears as this is going to be a anxious time for me till these appointments are scheduled and I  get the MRI and see the neurosurgeon.  I hope and pray I can continue with the Panobinostat, along with my Kyprolis and Dex,  as treatment until then.  If it works and starts to shrink the tumor, that would be wonderful.  No radiation or surgery.

The O4 FaceTimed me tonight making the O5.  Cheri, Deb, Sandy and Louise.  Was nice talking with them even if I did get emotional at the end.  It can be hard at times.  But I love that they do that.  They were standing outside at Cheri's house.  Cheri asked me if there were lightning bugs in Florida.  Nope.  Sandy tried to get some in our FaceTime camera.  Sasha and Ellie loved to see them when they would come to PA during lightning bug time.

Quote:

When you are fighting cancer, it's not just for yourself; it's also for your family and friends.