Meet me with the Billies

I had both chemo treatments last week, and squeeked by with out needing any extra blood.

After my various platelet tests today I'll be getting both chemos (Abraxane & Carbo) today, and will come into the Clinic this Thursday for a 2 liter blood transfusion. 

My sister was here for a few bit to help prior to Ki having to be out of town. That was before Thanksgiving it's great to have family be able to step in when you need help. I'm thankful for my family, both the classic line up and my new and my good friends, who I've had occasional encounters over the last 5 years of treatment.

Sorry, I've not shared advances but we really haven't had much testing, My MRI last month, and the CT scan this month should have something.

Somehow Maybe

Yesterday (Tuesday,) was the usual get fluids, and multiple tests to see if I could get one, both or no chemos.

Luck was with me and the tests, all were good enough for me to receive the gift of drier skin plus added hair loss.

Actually this is very good, as I have an MRI in a couple of weeks and a CT scan in December. The CT hasn't been scheduled yet, as I needed to get more of both treatments to see how effective they are, 

Dr McGreggor suggested my testosterone may be low, and we tested it yesterday with the result being fairl low. So now I'll be taking a booster, likely a home shot. We expect this to get me better energy.

I'll let ya know...

Chemo vs. Hair

My days pretty much consist of being very cautious when I'm on my feet.  My balance isn't good and Our hyper energetic kitten "Q-tip" doesn't help much with this. At least He's been more snugly as of late, so that's nice. I've mainly been reading a lot, and listening to music.

He and Cali have been in our laps more frequently, and he's into cat toys, and headphone and laptop power cables. My unfortunate sister discovered his proclivity for cables during her last visit. I just discovered he's chewed on the rear speaker cable for our sound system, so no surround sound for now...

My skin has been dry and I'm seeing a fair amount of hair departing (most of my gorilla back hair has fallen out 🤗🤗 which I see as a bonus.)

This week I wasn't able to get either chemo, I needed a blood transfusion which I got yesterday (the usual 2 bags, and hopefully that will help with my test results next week. 

Here he is doing flying twisted kitten joga pose;

Fun with Chemo and Radiation

Apologies for the lengthy absence.

I'm done with the radiation on the tumor in my midsection between my adrenal gland and right kidney as of late August. My midsection and part of my legs this week decided to flake skin like crazy. Thank goodness I have Gold Bold lotion (with aloe inside) and Ki to help apply it. This is likely caused by the the radiation. Fortunately I didn't have any burning side effects, essentially this is dry skin with no other noticeable side effects.

After this I started a chemo regime once every week, 3 weeks on and 1week off. I've been getting 2 different drugs ideally together, but blood platelet levels are determining if I can have both, or one. And I'm taking so many other medications, the name of the both chemo drugs simply elude me. Turbofloxicilan or something like that x2. This week I only was able to receive 1 of them and I'm pretty tired.

Ki made the mistake of checking the adoptable kittens at the pet store... And this kitty's name has changed from snowball or snowflake (or something like that) to Q-tip, or Bubba-Q. He's 3 months old, and is ruling the roost. He's very active, and already seems to have adapted to 2 sister cats, the food and the house. 

Meet the New Team

Dr Kim McGreggor Oncologist at Good Sam Hospital 

Dr Mary Austin-Seymore Radiation Oncologist at Good Sam Hospital

Transfusion/Infusion staff at Good Sam Hospital

Sad to say goodbye to the Clinic, but after my first week of radiation treatment (weekdays) I really am impressed with my new Dr's, and their staff. I already was familiar with most of the transfusion/infusion staff at the hospital after last fall.

I've had my first 6 tumor zap sessions, and it looks like I'll be getting 17 total. My other treatments (you can call them chemo/or biologics) Opdivo with Yervoy is on hold during radiation, which is normal during radiation (to not administer chemo)

Ki and I met with Dr McGreggor yesterday and wow she's smart, and has a lot of potential treatments in mind. She's going to try getting some of the treatments I've been denied as well as some ideas from my DNA tumor results Dr Garly sent to her for the Foundation One group. 

I'm dealing with a lot of fatigue, but luckily my Wonderful Mother and Sister are arriving to help at home, and to get me to appointments. It'll be great to see them soon.

Some Things New, Some Thing Blew, and What's This?

Ive.been experiencing a combination what feell as if many past issues, just met a handful of newbies on Matchcom, happening over the last week.  No shout outs to the dating site where the "founder" looks related to Don Knotts.

It's just not much fun, to figure out what to do, when it's not 100% easy to describe, or trying to describe accurately when my radiation brain automatically wants to swap "shingles" for  "scabies" and Ki gives this look of horror, when the nurse or doc I'm sharing this new issue with' face turns white. 

Related to this, I had a relatively easy bout of Shingles a couple of weeks ago, which we caught very early, and we're lucky to have isopropyl alcohol to start drying it up, and Dr Garly prescribed a twice a day, for two week dose of Valocyclovir which I now have to take daily until the Dr says it's done. The rash wasn't huge and the pretty pustules which were there have all disappeared. At least this was caught early and didn't hurt like a full born bloom of Shingles does. one bonus was I did get my own rooms when getting two fluid infusions, and in the Ambulatory Transfusion for bonus blood a couple of weeks back.

My next note-worthy update surrounds my meeting with one of the Good Samaritan Radiation-Oncologist (Dr Mary Austin Seymore) this was set up by Dr Garly, as I've been experiencing regular bouts of strong pain either in pokes or longer steady bouts varying from 4 - 8 on a scale of 1 - 10 . There is a good size tumor on my right adrenal gland near or partially touching my Kidney, and we decided it's painful enough to need some treatment. Of course being near a Kidney, enhances the possibility for complication, but it's hurting enough that I get to know a whole new staff.

I got a meeting set up with the Oncologist (Kim Mc Greggor,) who had been recommended at the hospital, and her staff had booked me for 8/10, but both Dr Austin Seymore, and the nurse I was working with in the blood transfusion group, had calls with her on Friday, and both mentioned my case and what a joy I must be to work with? 😊😁 and the appointment was able to happen a week earlier (of course I don't have the new date (Ki got it though,)

This Teusday I have my next dual treatment and hopefully we'll see some progress with both procedures. I am sad to be likely leaving Dr Garly's service, but as she won't be here as a locums doc, this will just be moving fwd a little quicker.

Much love to all still checking in on me. My fatigue has impacted how often I manage to update here, hoping that can improve!

5 Dual Treatment and More

Last Tuesday, I had my 5th dual cancer treatment with Obdivo and Yervoy. On Wednesday I had a CT scan, and Thursday had another Blood transfusion.

CT results are decent. Some tumors grew 1mm while others reduced 1mm and the rest were the same.  

My right adrenal gland tumor has started to push on my liver and is causing some pain, and Dr Garly is working to get it treated using radiation to ideally kill that tumor

Dr Garly has just been to a symposium regarding the dual treatments I'm using, and one of the takeaways was change less than 1 cm was for the most part negligible. Plus if you remember from my first Yervoy treatment, it takes a little time for immunotherapy results.

Being married to Ki is such a wonder. I'm very proud to be his husband.

Not much funny this time around, but hope and support for all we love and are loved by.

4th Dual Treatment and a Birthday

2 days ago (Tuesday), I had my 4th dual treatment of Opdivo and Yervoy. Also I met with Dr Garly, and after discussing some of my recent gas issues, we decided to move the next CT scan forward a bit to see if I had any growth in my intestines. I don't have the date yet, but expect to know sometime soon.

We also discussed my plans for after she leaves, and a couple of oncologists at Good Samaritan hospital whom I'd considered. Interestingly Dr Garly may be at the Corvallis Clinic longer than August, depending on the management (as she's a Locums doctor, she has a temporary contract here.) I do enjoy working with her, and let her know I'd stay in her service while she's here. I had a joke, but as I'm resting at home with a gurgling belly, you'll just have to imagine something funny and smile.

The blood work shows I'm remaining stable at 9.9, for a 2nd week, which is great news. The rest of my test screen shows I'm holding the other important bits (electrolytes, etc.) in a normal range, so that's good news as well. Must be those shakes blends Ki makes for me and the yummy gummy multivitamins.

And for those who haven't seen any of the wedding pics posted on Facebook, here is one of Ki and I. 

I also turned 47 last Saturday.

Marriage and Stuff

This has been a busy, and fulfilling week. Last Tuesday I had my 4th dual treatment of Opdivo and Yervoy. I also had a transfusion of 2 liters of blood. My side effects were mainly fatigue, and some constipation. Now that's excitement right?

Oh yeah, almost forgot (not really,) on Saturday, the 23rd I was able to have a wonderful day and married the love of my life. We had a lovely ceremony at Flinn Block Hall located in Downtown Albany (vs Downton Abbey...) Our ceremony was short and sweet (we were close to tears.) We asked our great friend Dean Clarke to perform it for us, and my favorite brother, Ed did double duty as my best man and photographer. I'm looking fwd to thie pics. 

Also my favorite sister Liz, brought her friend Mark (former Disney/Pixar artist) to draw caracatures of people at the wedding. Many are posting them on FaceBook as a profile pic. Mark spent quite a bit of time with every one and made many folks super happy. We had one done prior to the ceremony, and he took photos of our wedding party to do one of the group as well. I'm very excited to get this once he's finished.

The turnout exceeded our expectations, and it was great to see many folks from Ki's family, and dear friends whom I haven't seen for quite some time. Many of whom were the Southern Oregon contingent who mean so much to me and others who travelled a long way .Too many to name individually, you all know who you are, thank you!

As to my new hubby, Ki has kept me alive and kicking as through these years, so this was an important step for both of us as we've been together since July 11, 2009. And I have so much love for him, this was the best way we could express it. Now we have a new anniversary!

Two Treatment Tuesday

Yesterday I started the dual treatment combination of Opdivo and Yervoy. It took a while to administer as the infusions aren't simultaneously given. Also I had a liter of saline infused before, so that added roughly an hour to the time. (8:30 am - 1:30 pm.)

I've not experienced any side effects other than a single diarrheal movement, and I'm hopeful that will be well controlled with Imodium. It's usually been just a few days of that after previously being treated with Opdivo. 

The amount of that drug is reduced somewhat in the combination but the Yervoy is the same amount.

One nice tidbit, I just learned is both Opdivo and Yervoy are produced by Bristol Myers Squibb (how'd you like Squibb for a surname,) so the officially publicized idea to combine the two coming at the same time Opdivo was FDA approved makes more sense now.

Hopefully this will give me some solid results, and I'll keep updates coming.

MRI DUCKS MRI NOT

And by ducks we mean tumors, leasons etc. in my brain.  

And In case you're not getting the dual reference joke ...

An MRI is a Mechanical Resonance Imager which provides sliced imagery views of anything you place in the tube and run into and out off enough times to combine the many images to get an accurate picture of a brain. The magnets strength vary by cost of machine, but no belts, jewelry, nada magnetic should join your brain for the noise fest that commences. Just ear buds or sound proof headphones.

The joke is an old "redneck" joke which is funny just a time or two:

REDNECK SPELLING TEST

MR DUCKS

MR NOT

OSAR

LIB

MR DUCKS

I had an MRI this last Monday and fortunately there are no new surprises (last one was in August 2014.) Part of me had hoped they're be some new connections in my brain due to my months spent using Lameosity, but alas... I signed up to try Lumosity last year  on The App Store, and stopped playing after I mastered the games avaliable on iPad and they become too reprtative. So I figured delete the app and move on, but no...I get this mystery PayPal charge to renew Lumosity for $79. 

PayPal was quick to refund (almost as quick as I was to change my password and email.) What bugged me was I first paid Lumosity via the App Store (I love how these things automatically capitalize after being input, imagine super hero pose with cape and deep voice each time for effect.) and then somehow they're getting money via PayPal without my knowledge. 

I suppose this is what say to ever using Limosity again 👣💩

Yesterday I had my 5th Opdivo treatment, and am glad I hung onto a bottle of Imodium ...it' wasn't needed more than a few times, but this does seem to finally be a side effect of this treatment as it was similar the last time 2 weeks ago. 

And without a stomach its gurgle palooza before the Imodium. If you ever go into a heavy drug treatment get ya some just in case, or do the natural Brazillian way, and mix half a cup of corn starch and water and drink.

Third Opdivo Treament

Well my oncologist "Dr Lady," will henceforth be known as "Dr Garly." She's staying on here as a locums Dr until August, then returns to the paradise known as Fresno... (Hey I was born close to Fresno so I can make fun if I want!)

I'm glad to be working with her. She's smart, has a fair amount of experience and is very open to hear what Ki and I have to say.

Ki and I met with her on Tuesday before my latest infusion of Opdivo. We'll be having an office visit with her every other week which is the same schedule as my treatments. Having a cancer treatment every other week should be something I'm used to as Keytruda was also in two week increments, but I was kind of caught off guard when I realized it was a treatment day. Radiation brain strikes again I suppose.

My weight appears relatively stable at 185lbs (or if I need fluids it's just under by roughly a lb, then it bumps back up with the liter of saline.)

Other updates are my next MRI (the jackhammer sounding brain/head scanner,) this coming Tuesday and a fresh CAT scan on April 15th. As always cross 'em if you got 'em for good results!

Second Opdivo Treatment Done

Yesterday I had my second Opdivo treatment and so far no issues. I'm hopeful to not run into side effects, so I'm crossing my legs as I write this update.

I also met my new temporary/locums oncologist Dr Lady (I didn't catch her name as her visit was just checking in while I was being infused.) She was super sweet and well versed in my history. I have my first office visit with her in two weeks. I'll do my best to get a better name than Dr Lady ☺️.

I don't have a new scan scheduled until April, and after that we'll decide if I'm going to add Yervoy to my treatment plan, which is exciting to me but likely not to my insurance...

For the most part, I'm doing fine. A bit low energy still, but staying optimistic and keeping my head up.

Welcome to Opdivo, Bye to Keytruda

I'm currently getting a bag of saline infused, and my oncologist Dr. Blanchete got me approved for the "other" Keytruda. It's called Opdivo, and is FDA approved as of late December 2014. It's similar to Keytruda, except it has a higher success rate, and is being offerrered in studies in conjunction with Yervoy. 

This means I could potentially get both Yervoy and Opdivo during the same time frame, although Obtivo is administered every 2 weeks and Yervoy is typically every 3, so I don't know but would expect if I were to go this route exactly how to expect it to be scheduled. Likely seperately.

We're going with just Opdivo to start and only if I need it would we do the combination therapy.

Also Dr Blanchette is checking to see if the govt has any studies with Opdivo and Gleevec.

My blood counts are holding which is great, but I'm still struggling to gain weight. I'm able to tolerate quite a bit of different solid (normal) food but am still counting on the high calorie shakes Ki makes for me for the most part.

That's most of the latest bits, other than I'm about to sell some gear to pay for part of our wedding expenses. Anyone looking for a like-new Fender Twin amp? How about a black and yellow swirled frankenstrat with lots of upgrades? 

Apologies for the Delayed Update

It's taking me a bit to adjust to my new life as an internal amputee (just being silly, and not an ounce of disrespect to any one who has lost a limb etc.)

Quick Updates:

I had a CT scan Tuesday.

- Not much big change, but, the adrenal gland tumor shows some small growth (which according to Dr Braich, who is subbing for Dr Blanchette, might be false growth?) I didn't write exactly how he described it, but I'll hope that's the case, but act and plan that it's not.

- Also we discussed a tumor that's in my small intestine, but it was no larger than in previous scan. It's notable, in that we hadn't seen it in scans before that, but we also weren't aware of the one the surgeon removed during my stomach operation.

Our prevailing thought is to have one more infusion of Keytruda which is scheduled for next week. Then when Dr Blancette returns in a couple of weeks, we'll likely go back to Gleevec which fortunately we still have the last 3 month supply I ordered before the Keytruda was an option in September. It's not uncommon to resensitize to it after a break. 

A big drag is pretty much most all the new treatments coming to market are for advanced melanoma with a BRAF mutation, and mine has a KIT mutation, (which is why I can use Gleevec. And there are a couple being developed for the KIT mutation, but they're in phase 2 or 3 trials.) But I don't have the BRAF so the ones already coming out likely won't help me.

There are a couple of chemo options (1 being a daily pill that apparently is easily tolerated,) and a return to Yervoy is an option as well. Oh and the option for the "vacation" of Bio/Chemo...meaning IL2 with Chemotherapy. That sounds well, quite unpleasant.

On the no stomach front, Ki has done a great job preparing calorie rich shakes, and I've been able to either swap with regular food or augment the total as well (I have to essentially orally digest anything solid - in other words, lots of chewing.) I really need to add some weight and finally I'm up 2 lbs. 

We don't know exactly how much I weighed post hospital, but I weighed in at more or less 185 (different scales and attire made it a tad uncertain,) and on the same scal and clothing, Tuesday I was 187.

At the oncology visit, the nurse looked at my eyes, and said I still have a sparkle, which was sweet. I'm not giving up.