Welcome Summer!!

I know it's been a little quiet here, but things have been not so quiet with me.

Since we were last together.....we shaved my head because the hair was just falling in gobs and looked like straw.  Thankfully I kept my scarves from before, as well as adding a few new including a nice hat ;) 

Should be nice and cool for summer :/

Started Keytruda May 3rd.  Took it with Halaven.  Lasted about 2 hours.  Things started out normal.  Headaches, abdominal pain, fatigue, constipation, you know, the fun stuff.  By the 4th day after, my skin started itching.  Was not too alarmed as that is a possible SE of Keytruda.  By day 5 it was now a visible rash on my stomach.

At day 8, when I went for Halaven only (which ended up including magnesium and potassium), I showed it to the nurse.  We went on it was a reaction to a new pair of leggings I threw on before washing (we've all done it, admit it), and my skin was sensitive to it.  She told me to take Benadryl and use cortisone. Home I went to start the SE all over again.  Now I get to add evening chills to the mix the first night, low stamina, and weak legs.  More fun!

The true fun stuff was coming because my sister came for a visit while Bob went to Florida.  What a fun long weekend!!  We stayed in our PJs one day, watched old movies, went shopping, ate out and just had a great time relaxing together.

Unfortunately my rash only got worse during this time but she was here to help and got to visit Froedert with me.  Now who would want to miss out on that!?  During my hospital visit they told me to try Zyrtec and Pepcid as well as calamine (which I had been using) and Sarna (which my sister suggested).  Finally after two weeks the rash was mostly gone and the itching tolerable.  Went for a nice motorcycle ride one nice day, and the rest of the time I stayed home because of all of our "great" weather that didn't want to leave.  I also went to see Book Club with friends, I would recommend it. Funny.

Ouch.

I went yesterday for my doctor visit and chemo/Keytruda.  My counts were good, yay, I got treatment.  My doctor thinks the rash may be an allergic reaction, boo!  Because of this, I only got Keytruda.  We are going to see if the rash happens again with just one med. Maybe the reaction is from the combination.  If no rash, I will get Halaven next week.  Now we wait and see.  🤞

My summer officially starts tomorrow with the annual gathering of Rhythm Method fans at Immacculate Heart.  And, a Memorial Day visit to The Bunker and their Memorial Day Salute.  I hope everyone has a fantastic holiday weekend, but please take a few minutes to remember the reason for the occasion.  🇺🇸🎗️✝️

On a finally happy note, I'm a grandma!  Meet my four legged granddog, Moose.  A soon to be 200 pound Mastiff.  😳

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.

Spring has Sprung!!

I know I'm long overdue for an update but, well, there just isn't much new to tell you.  I have been bouncing between chemo treatments and living life the best I can.

Since Januarys PET scan I have done 4 treatments of chemo, traveling back and forth from Florida to do so (thank you Frontier and Allegient for your cheap airfare!!).  Bob and Lola stayed and enjoyed the warmth until our mid February return, brats.

My days after chemo consist of the couch and TV.  My excitement is watching the stock market whiplash around.  🤣🤣  About the 4th or 5th day I finally feel somewhat normal and get back to life.  Most all my visits, lunches, chore days, etc are all done the second week after chemo.  If you want to meet up, that's the time 👍  Between the fatigue, and flu-like symptoms from chemo and the bone pain from the Neulasta shot, I'm a mess otherwise.

I hope everyone got a chance to enjoy St.

Patty's day.  I opted to skip this year since the flu has been so bad.  I still am avoiding closed spaces as much as I can, with a venture into them occasionally.  Come on warm days and open patios!!

My counts are much better now that I am getting the Neulasta shot.  I actually have made it up to 4.0.  Woohoo!  1.90 to 7.80 is normal range.  A far cry from my .4 low.

I have been having some stomach pain(ish) the last couple of weeks.  Comes and goes, but with a stomach type cancer it is nerve wracking.  I can never have a simple stomach ache or headache again without my mind psyching me out.  I have a new PET scheduled for April 18.  Hopefully, things settle down and the scan is stable or clearer.   🤞  Should we get continued

improvement, my doc has actually talked about maintenance chemo.  I soooo am hoping for this.  A once a month infusion would be so welcome to give me many more days of feeling good over feeling bad.  I know I will never be treatment free again, but this would be a welcome compromise.

During this chemo I have been able to keep my hair, but it is thinning, and those darn eyebrows are disappearing again.  :/  I have gained back weight since my low, probably a little too much :)  Funny thing is, my doc is actually happy about my good appetite, lol.

I have started back with mentoring in an indirect way.  A woman I don't personally know but from the internet, is dealing with TN cancer.  We chat often when she starts to freak out about things.  Makes me realize I'm ready to get back in the groove of mentoring.  I stopped at my Stage 4 diagnosis to deal with my own fears.  I think, hopefully, I have them back under some control.  I will never be worry free, and I know that someday (hopefully far, far from now) my luck will run out.  But for now, I'm dealing with things the best I can.

My oldest daughter and son in law, have become new home owners.  So exciting!  I get to help them move, and move in.  Home ownership is such an exciting and scary move for a young couple.  I remember our first home we bought in Milwaukee back in 1989.  My sister in law walked around with a (very big) video camera and filmed the house.  Sent us the video in PA where we were stationed in the Army.  We proceeded to go back and forth on fax machines (with the long sheets of roll paper), at a Kinkos store, signing papers.  Moved back to WI, 8 1/2 months pregnant, to a home we never even walked through.  My how times, technology, and home prices have changed.

I don't know about the rest of you, but, I am ready for Farmer's markets, festivals, bon fires, motorcycle rides, sunshine, and the beauty of Wisconsin in Spring and Summer.

Thank you to everyone who continue to check in on Bob and me.  We are hanging in there.

Happy Easter to everyone.  May you enjoy family, friends, and faith.  It all keeps me going. 

Check your boobies folks!!

I'll be back with PET results soon.

Spring is 53 days away and the days are getting longer!

Well I promised an update as things newsworthy happened, so here goes.

Christmas was awesome having my kids home if only for a little while.  New Year was spent on Main street in Daytona Beach with a light jacket......be jealous.  Temps were in the 50s to 60s, which was way better than Wisconsin's single digits.

I have spent many days traveling back and forth for treatment and doctor appointments.  The last was a return for a PET scan to see if the treatments are working.  To say my family was nervous is an understatement.  Nail biting commenced.

I am happy and excited to report that not only is it working but the cancer is decreasing in all areas!!  There is visible and substantial changes in scans from Oct to Jan.  My doc is very happy with the results.

The report is a bunch of gobbledegook, but the one thing understandable is the many times the word decreased is used.  I have added the pictures from the scan in hopes some of you or all of you can see the difference.

In this photo the left was last scan, right new scan.  Looking left at the right lower neck to mid chest you see black spots, those are enlarged cancerous nodes.  In the new scan looking at the same area you don't see them as much.  (the other black is my organs).

In this scan on the left you see a very bright spot in the middle, on the second it is much deminished.

And again the bright spots are gone or much smaller.

And finally, if you look at the pic on the left, there is visible fluid build up on the left side by the ribs.  On the right, it is gone.

So the quick version is, it's decreasing and no organ involvement anywhere.

I have a change to treatment based on my last three months results.  I will continue with the same chemo.  My treatments go from 2 weeks on Thursdays, one week off; to every two weeks on Thursdays, mostly.  I will be getting a neulasta shot every day after chemo to help keep my counts up.  Hopefully the side effects will be tolerable with only a few days down with chemo blahs.

I will also be able to get out in crowds and with more people very soon without great fear of getting sick.  I am going to wait until flu season is almost over....ya sickies.  My next few months will involve; The Price is Right in Milwaukee

with Emily, Florida a little more, Finding Neverland play with Bob and who knows what else.  St Patty's is not far away and I hope to be participating in the festivities.

I will be the smiling one.

💜💜💜

I cannot thank you all enough for your words of 

encouragement and prayers. 

💜💜💜

It. Is. Working.