We will start with the good.  Merck has approved me for Keytruda for a year! 

Woot!!  Saved me a ton of money, and my mind.  I am still going after my insurance company and my Washington (useless) reps to make my voice heard about how ridiculous it is that they deny investigative meds.

Keytruda is given in a drip bag and will last about 30 minutes.  Pretty sure Merck will be studying me as I'm Triple Negative and BRCA2+, just what they want to prove it works for.  We start this on May 3rd after my doc visit.  Will update again after this.

The bad.  I have had two injections of Halaven chemo to start and my side effects have sucked, to put it plainly.  Days 4 and 5 being the worst.  My continued SE have been stomach pains, body aches, headaches, nausea and extreme fatigue.  My new side effect is mouth sores.  If you have ever had canker sores and strep throat together, you know how it feels.  Eating hurts.  They did subside after about a week.  I also got a "magic mouthwash" for the next round.  I lost a few days to sleep, and pretty much couch potatoed for two weeks.  I actually keep up with The Young and The Restless now, lol. 🙄  I am hoping things get better as we get further into treatments.

The Ugly.  My white cell counts have

tanked.  I went from 6.1 to 2.0 in a week.  Pretty sure its going to continue to drop during all this and will again have to miss some treatments here and there.  My potassium and magnesium levels are also tanking.  My last injection also required 2 bags of magnesium, so my session went from 5 minutes to two hours.  And last but certainly not least, my hair is falling out in large quantities, again.  I left Wisconsin with hair, and will return from Florida with none.  Oh well.  Yeah, eyebrows, eyelashes, and nose hairs too.  So, runny eyes and runny nose.  🤔

Ending on a good, the difference between my two weeks of chemo vs my off week is very dramatic.  I actually feel normal during the off week.  And it is welcomed after two weeks of shitshow.  ;)

On my way to Savannah today with the hubby.  Very much looking forward to seeing some old buildings, old trees, and maybe a ghost or two ;)

Until next time...happy spring....finally!!

This hat is my new motto.   :)

Welcome to the shitshow of my life.   After an agonizing weekend waiting to see my PET results and talk with the doc,  my appointment finally arrived on Tuesday afternoon.

Before even getting to the hospital,  I got a

letter from my insurance denying the Keytruda.   This is the immunotherapy drug that unmasks the cancer cells and allows my immune system to work on killing them.   Some doctor somewhere browsed my claim and decided because it is experimental with breast cancer they won't let me have it.   I was pissed.   I called the expedited greivence line and of course got some call center, somewhere in the world, who could do nothing for me.   She did get an earful from me asking why they are going to let me die when there is an option to save me....... Stammering and nothing but the stock BS answer. I hate insurance companies that play God.   I am not done with them yet.

At the docs office we discussed this denial,  and he explained he expected this and we will now go to the manufacturer directly.  (He also stated that Humana is one of the worst to deal with,  FYI.) The manufacturer wants their drug out there in any form that it may work.  He assured me we will get it.   In the meantime,  we discussed my new options and the new plan.

We first are doing Halaven (Erbulin) until Keytruda is approved,  then we will do both.   Halaven is administered in a syringe two weeks on,  one week off.   The third dose is given with Keytruda, which is a drip.   The entire process will take, maybe, two hours.   A far cry from the six hours I was doing with the Gemzar/Cisplatin.  A big plus 👍

Side effects-well., they vary but with Halaven my hair is going to thin or go bye

bye 👋   I should be able to handle the rest well.   Fatigue will still be an issue and we are back to low counts.   Boo!  At least Summer is coming..... I think. 🤔  Keytruda could be tricky.   With the unmasking of cells,  it is non-descriminant.   It could start to affect organs, mostly the liver and kidneys,  so they need to be monitored weekly.   Other than that,  it is known to be tolerable.   🤞

Fluid near lung

Friday before the appointment I had a Thurosentisis.  They numb your back with Lidocaine,  then take a needle and suck out fluid,  which I had a lot of.   After a few pokes that almost put me through the roof,  they got half a liter off my left side near the lung.   This will be sent to Foundation One who will hopefully have enough sample to get the genomic breakdown.  If not,  I will go in for a biopsy from my abdomen. Fun, more knives.   One way or another we will have a genomic breakdown to help find what may be the most effective treatment for me personally.   Again,  I swear genetics is going to solve this.

After discussing the plan,  we looked at the pictures.   They are not good.   We are literally back to the start.   We blew past the January PET and are even worse than the October PET.   Always have been an overachiever in some respects.  The black dots are where the cancer is.   Not all of it is, but for sure the chest chain,  and the front blobs are.   Some are my heart and kidneys.   A comparison from the good Jan scan gives an idea where the organs are.  The black in the skeleton is to uniform for it to be in my bones, so we are going with that for now.   The good news is it is still not in any organs.   The next picture is the lit up area in the peritoneum that has grown. 

Jan and Apr

Another Jan and Apr

Oct and Jan

Front belly lit with cancer

I am allowed to still take my CBD and vitamin D,  but all other supplements have to be stopped.   With Keytruda affecting the liver, alcohol is an absolute no.   I have pain meds, Tramodol, when needed for my abdominal pain.

After my appointment we had chemo.   I

Then

finally got into my chair at 4:00.  I have to take dexamethazone for

Now

nausea and then they insert the syringe in my port line.   Five minutes later the line is being flushed, a bandage applied and by 4:35 I was out the door.   A big silver lining.

I don't want to jinx anything but,  I think
my belly does not hurt as much as it did before chemo.   Psychological,  maybe,  maybe not.   We will see after the next dose on Tuesday.All and all we both felt much better after leaving the doctors office.   We do realize that we are in trouble,  and we are all scared,  but we are determined to continue this fight until it is no longer possible.   And we still have options to exhaust if this combo does not work.

We are down,  but we are not out.

Check the boobs!

Well I have some bad news.  My stomach pain was worsening so I was able to get the onc to see me.  He ordered the PET to be moved up.  I did it yesterday.

I was suppose to have chemo today, but the nurse couldn't do it until the doc cleared it.  Well you guessed it, no chemo.

I don't have any other results, nor have I seen the results but, talked to the doc on the phone and I have basically a 100% progression.  All the beautiful scans I had last time are wiped out.  The areas are somewhat new, there still is no organ involvement which is good.  My colon is being rather pesky, which is the result of the progression and it being pressed on.  A common occurrence with this kind of mets.

I go tomorrow for a thurosentisis, where they numb you and withdraw fluid.  That fluid is looked and and verified to be malignant.  They will then send it to FoundationOne for genomics.

In the meantime.  I am going to be put on Keytruda.  It is an immunotherapy drug and has shown positive results for Triple Negative cancer.

Basically my cancer cells are masking and the chemo can't see them.  This drug, unmasks them so my own immmune system can go fight them.

Let's hope THIS is the one that works!

After my appt Tuesday I will post more.

Bummer.