I’m late with my update…

I realized I never did update my 2nd round of PRRT. That’s mainly because everything went just fine. It was a slightly shorter day (whew). We were done by 2:30pm. The 3rd round is planned for April 29th. I felt ok afterwards. My throat was sore for a few days and my stomach was, again, sour. Fatigue is a little worse but I’m taking pain meds throughout the day so it could be those.

My creatinine has been hovering around 50-53 and it has to stay above 50 or they will not do the next round. My GP took me off Celebrex due to thinking it was affecting my kidneys. Since then, I have been incredibly miserable from cervical neck pain. I am shocked at how much the Celebrex was helping me. I even went back to the pain clinic and had another occipital nerve block, hoping it would help. It hasn’t. The pain doc told me to take more pain pills if I need to. I’m so mad. I had the nerve stimulator implant so that I wouldn’t have to take more and more pain pills. Now I’m in that (slowly sinking) boat anyway.

Oncologist appointment this week. I don’t know if they will do bloodwork. They usually do when I see him. Hopefully, since I’m off the Celebrex, my creatine will be better. I forgot to mention that it has been “below normal” for years…

Stay well, stay safe!

Here’s a cute picture of my dog Sookie. Just for fun.

One down, three to go!

I’m a little late posting an update about my first PRRT treatment. First, I’d like to say it went off without a hitch (or hiccup)!

I was there from 8am until 3pm. Long day but it went by quite fast. My nurse, Jen, was awesome! She checked on me just the right amount. Not too much to be annoying!

When I first arrived, she had me change my clothes. I wore a hospital gown with paper-like shorts under it! Plus paper booties. The don’t like you wearing your own clothes as the radiation might stay in them longer then they like. Next time, I am taking some hospital socks I have and then I’ll just throw them away. The paper booties didn’t want to stay on.

After the change of clothes, she started my two iv’s. One in each arm. They use one just for the Lutathera (radioactive material, which was clear and in a glass bottle like you would see insulin or something).

She then started some anti-nausea meds and an antihistamine (non-drowsy).

Then after about an hour (I think) they started the amino acids, which protect the kidneys since Lutathera likes to accumulate in the kidneys (which isn’t good). I had that infusion for an hour before they brought in the Lutathera. It was very interesting how they administered it. I will try to remember to take a picture next time. They use gravity for the infusion. The bottle was put into another container (probably lead-lined) and a long needle was inserted into the top of the bottle. Then another needle was inserted that went to my saline solution iv bag. The slow release of the saline, into the Lutathera bottle, pushed the drug into my IV. It took about 35-40 minutes. I had two radiation techs plus my nurse in the room with me during this time. They continually checked the radiation levels going out from the bottle and then into my arm. It was pretty cool.

After that finished, it was 3 more hours of amino acids. Then we waited another hour and she gave me my lanreotide shot. They found it’s better to give it the day of Lutathera over waiting until the next day as patients were having some carciniod crisis symptoms the day following Lutathera. Something like that.

I have pictures but haven’t figured out how to insert them! If anyone has a quick tutorial, send it my way!

Until next time. Stay safe out there!

Radioactive

January 7th I’m scheduled for my first round of PRRT. I’ll be radioactive girl for 3 days after! I have to stay away from people, kids, and pets for that time. I can be around adults, for short periods but not pregnant women! I’ve decided it’ll be easier to have my sister stay here with my dogs, cat and fishies rather then find people to watch them. I’m going to go stay at a hotel. It’ll be a mini-vacation! I just hope I feel ok.

I had my cervical nerve stimulator surgery on Dec. 21st. Everything went well and I was home later that day, however, I got super sick Tuesday. I had a slight headache all day and threw up my lunch. After I logged off work for the day (working from home), I laid down and slept for about an hour. After I got up, I still had a headache but decided to try and eat something. That didn’t go too well. I ate about half my dinner and then threw that up too! My head started to feel like it was going to split open. I threw up several more times that evening and twice I got up after going to bed and threw up. About 11pm I realized I may be having a spinal headache. That is where there is a hole in the epidural space and spinal fluid is leaking out. I wish I had thought about it earlier. I might have tried to find someone to take me to the ER. I was that sick. I don’t remember ever throwing up that hard. I felt like I was puking my stomach lining. Seriously, it was straight acid. Any who, I survived and I felt a bit better the next day. I still had a little headache but it got better as the day went on. This was Wednesday. I had to go into the cancer clinic for blood work to make sure everything was A-OK for PRRT. It is so it’s a go!

I have two incisions from my nerve stimulator implant. One is right between my shoulder blades and the other is on my left side. It’s very sore but getting better. I go in this Wednesday for my follow-up. I hope they can take the steri-strips off. They’re starting to itch but aren’t coming off much on there own!

I’ll let you know how PRRT, round one, goes after the 7th! Fingers crossed I won’t get too nauseous or throw-up!

P.S. I ordered me a t-shirt from Amazon that say’s “Hug me, I’m Radioactive”! Can’t wait to wear it!!!

Surgery blues

I’m scheduled for my Cervical Nerve Block implant on Dec. 21st. Sooner than I though it would be. I usually don’t get too nervous before surgeries and procedures but this time I am. What with my tumors being more “active” and my constant flushing episodes, I’m worried about Carcinoid Crisis.

Carcinoid crisis causes a severe episode of flushing, low blood pressure, confusion and breathing difficulty. Carcinoid crisis can occur in people with carcinoid tumors when they are exposed to certain triggers, including anesthetic used during surgery. Carcinoid crisis can be fatal.

Google

Read that last sentence again….

Yup, fatal. Carcinoid crisis can be fatal. My concern is really that this surgery is scheduled for the day before my Lanreotide shot! I wish it was the day after. You might ask, why not go get it a day early? Great question. The answer is super simple. Insurance won’t pay for it even one day early! That’s an $18,000 shot. Not something I can afford to pay out of pocket.

My best plan is to talk to the anesthesiologist right before surgery about have a plan in case of CC (Carcinoid Crisis. There is a protocol for CC.

Treatment of a carcinoid crisis should consist of blocking the release of the mediators from tumor tissue by administering somatostatin analogs, such as octreotide (20,23). In the acute situation, 100–500 μg of octreotide can be safely administered intravenously 

I’ve never had issues before but since my tumors are being naughty, I need to make sure they take precautions. I wish it was standard protocol to meet with the anesthesiologist a day or two before and not as they are wheeling you into the operating room (ok, probably right before).

I’m waiting for a call from the hospital on when to go in to get a Covid and MRSA test. Both are nasal swabs. I’ve had the MRSA test before and it’s no big deal but I’ve heard some people say the Covid test feels like a brain swab.

I’m also waiting for insurance approval for PRRT. I don’t know how long that will take. I was hoping to get my first treatment before my January shot. They like to do it right before so the tumors are “hungry” for that radioactive peptide!

With Christmas less than two weeks away, I want to wish everyone a very Merry and I hope you can enjoy the Holiday even with the COVID restrictions.

All my best, Sharon

PRRT is the Plan

I had a bad month in October. I just felt like crap. Flushing constantly (or at least it feels like it). I’m still not sure if it’s my hot flashes coming back with a vengeance or flushing. I am getting red/pink now whereas I didn’t before (except my ears would turn purple).

I saw the PA at the cancer clinic and she was so kind and caring. She ordered another Gallium Scan and off I went. I went in this morning to meet with my oncologist and the scan report said mostly the same, some tumors are bigger but have less uptake. I don’t really know what that means. The report did mention a lymph node that is lighting up somewhere by my esophagus. No change from last scan–um, this wasn’t even mentioned in the last scan report. Once again, no effort made by my oncologist to show me the scan. I didn’t even ask.

I decided that I am moving ahead with PRRT. I have no idea how long the process is to get it. I didn’t leave feeling very confident that the clinic really knew what they were doing. I’m not sure why. I know others who go there that have had PRRT. I’ve sent an email to one to ask him how long it took before he actually got it. I didn’t even ask about liver only directed therapy. I had pretty much decided on my own that PRRT was better as a first line treatment. If the veins/arteries feeding the tumors are damaged, from say, liver embolization’s, then the PRRT will not be as effective. I can still do liver directed therapy after PRRT without any damage being done to the veins so…

I also had a cervical nerve stimulator test done for my cervical (neck) pain. It didn’t work as well as I hoped it would but it did help by reducing my pain by about 50% -70%. The doc feels this is enough to go ahead and get the real deal. I have that getting approved and scheduled but I told them I was in no hurry and it didn’t need to happen before the end of the year since my insurance year is July-June. Other patients are trying to get in before their insurance reboots Jan. 1st and I didn’t want to take up an OR spot when I can wait. Aren’t I nice???

I’m hoping I can get the first treatment of PRRT done before the end of the year. They have to time it with my lanreotide shot–or just before my shot is due. They need my tumor receptors to be “hungry” for the radioactive somostatin analog they will be injecting. I’ve heard this treatment described as liquid radiation. I like it.

So this is where I’m at. Waiting…

Mabel has left the building…

Guess it’s past time for an update.  I had my yearly CT Scan in June.  I had  progression for the first time in 8 years.  Not a lot but over a centimeter on some tumors  My Oncologist decided it was finally time to get a Gallium PET Scan.  This is a specialized scan that shows neuroendocrine tumors much better then a regular PET Scan.  I had this done in July but left for a short vacation shortly after so I didn’t get the results for a couple of weeks.  That scan showed the same growth and multiple new sub-centimeter lesions as well.

My onc said I could go ahead and get PRRT (Peptide Receptor Radionuclide Therapy) now or wait and get another Gallium Scan in 6 months.  I decided to wait.  I’m just not ready yet.  Hopefully, I won’t regret it!  I also began to wonder if a liver directed therapy wasn’t better to have over a system wide therapy when all of my tumors are in my liver.  I spoke with a couple of other NET patients and they have agreed that PRRT is the best way to go.

I see my onc in November and then we should schedule the scan shortly after that.

If you want to learn more about PRRT, there is a ton of info on the internet.  Same with the Gallium68 Scan.

Thank you for reading and I hope you are all well and not going stir crazy with the COVID-19  crap!

 

 

 

Scan update!

I keep forgetting to post the lung ct scan results.  I guess (thankfully) because it was “unremarkable”.  I figured it would be but you always have that little bit of doubt nibbling at the back of your mind.

It was interesting that it didn’t even mention other things seen on my abdominal CT Scans that show in my lung bases.  Perhaps because this one was completely without any contrast.  It did mention high dense material overlying the anterior surface of the liver.  I don’t know what that could be.  My doctor didn’t even call me with the results.  They were just posted to my patient portal so I couldn’t ask her.

I did get a pretty good laugh out of one thing!  After the above mentioned dense material on my liver, it said there was a calcification in the upper right hepatic lobe that could possibly represent shrapnel!  Um, shrapnel?  Really?  Maybe surgical clips?  Seriously, I did laugh out loud at that one!  Hey, if scans make you laugh, that is A-OK!

I hope everyone has a wonderful Thanksgiving!  I’m thankful for you all and for my family and friends (and for still being here after 7 1/2 years with metastatic NET cancer).

baked chicken

Photo by cottonbro on Pexels.com

 

 

Sunshine & Roses

This post isn’t about sunshine or roses.  I just liked the title!

pink petaled flowers

Photo by Asad Nazir on Pexels.com

I had a ct scan of my lungs yesterday.  I just keep coughing and coughing.  My doc took me off lisinopril as that can cause a cough (I’d been on it for 3 years though).  but I’m still coughing.  We’ve tried a few other things and she said next step was pulmonary function tests.  I must have made a face so she also mentioned just doing a ct scan.  I was like, hell yes!  Easy peasy and no long appointments necessary!  It was seriously the fastest scan I have every had.  I did’t even change my clothes and the scan took about 5 minutes!

I haven’t heard anything yet and I really don’t think it’s going to show anything.  The last CT scan I had of my abdomen just showed some scarring in the lower lobe of my left lung.  It’ll be interesting to see if this one mentions it.  (I did have a chest x-ray which showed nothing).

I’ll do an update once I hear.

It’s supposed to snow tonight.  So much for the roses!

 

Sookie-Pics

I wanted to add some pics of Sookie (Duncan snuck in here as well). Dogs are amazing.  A human would still be recovering from such a surgery!

Cone-1.JPG

Cone 2.JPG

Cone of Shame

stiches.JPG

Stitches!

Sook-Duncan Sit.JPG

Recovered!  They both need baths and a hair cut!

Sook-Happy.JPG

My favorite pic! 

CT Scan Update and more

I just realized I never did an update after my scan.  It was pretty much the same as always.  The only thing that made me go “WHAT”? was a few things never mentioned.  It mentioned again the scaring in the left lung base but also said Atelectasis or scarring…  it’s never said anything about atelectasis.  Of course, I google that since I didn’t know what it was.  It can be collapsed air sacs (partial lung collapse?)  Hell if I know.  My Oncologist never said anything about it.

The concern, to me, is that I’ve been coughing a lot lately.  That is the only symptom my mom had when she was diagnosed with lung cancer.  As I’ve said before, having cancer makes you a little bit of a hypochondriac!  Every new symptom means another cancer or your current cancer is growing!

One liver lesion grew a tiny bit.  From 1.2cm to 1.3cm (which can just be the angle of that picture).

The other never-before-mentioned comment was “scattered atherosclerotic vasculature changes”.  I think that means I’m getting old and my arteries are hardening?

Another test I had done was an EGD.  This was ordered by both my regular doctor and my oncologist due to my nausea issues.  I had that early July.  It showed only a lot of inflammation in my esophogus and stomach.  DX is gastritis.  The gastroenterologist put me on Prilosec.  It’s helped immensely.

Then I’ve also had several procedures on my neck, or cervical spine.  None of these have helped much.  I do have new changes in disk two, which is above the 4 they fused.  The pain is really high up — into my skull.  I’ve have the nerves on both sides ablated (left side helped but the right didn’t. Then I had an injection of the nerve (they call it an epidural) on the left side but that didn’t work either.  Then the pain doc talked about an occipital nerve block (that nerve runs up the back of your head) but he wanted to put me on Gabapentin first to see if that worked.  If it worked, they new the nerve block would too.  Well, guess what?  Not only did it make me super dizzy and nauseous, it didn’t work.  Argh.  Now they want to do another cervical epidural higher up on the side of my neck.  I have that scheduled for the 19th of September.  I had to wait due to my insurance plan year starting over in July and I didn’t want to have to pay for it until I’d met my out-of-pocket maximum with my sandostatin shots since I get that money back from Novartis through their patient co-pay plan!  At $17,000 a pop, it only takes two shots to reach it!

I’m about done with all the neck pain/crap.  I just don’t want to deal with it anymore.  If this coming injection doesn’t work, I think I’m done trying anything.  I’ll just have to live with it.

One last thing (I know this is a long one), My Sookie dog had continue issues and ended up having surgery.  It looked like she most likely had cancer…  $3,000 later, no cancer!  She does have Irritable Bowel Disease.  Like me, a lot of inflammation.  She has done so great since surgery!  Dogs are amazing at how quickly they recover.  She is acting happier and more energetic than she has in the last year.