4th and Last PRRT

I’m a bit late posting about my last peptide receptor radiation therapy (PRRT). Mainly due to there not be much to report! Everything went fine and I only have one blown vein (instead of 5).

The side affects are about the same. Sour stomach and I’m pretty tired. One new issue is I get dizzy when I exert myself (even walking upstairs at home). My blood count was low before this last treatment so I’m guessing they are even lower. I don’t go back to the oncologist until the 22nd. I guess they will check my blood counts then. I’ve been taking B-12 and it helps a little with the fatigue.

Success!

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This is how they administer the radioactive liquid . Checking my radiation levels before I leave.

This is what they gave me when I was all finished for the day! Too bad it wasn’t real Champaign!

June 18th was actually my 9th Cancerversary! Hard to believe I’ve had this cancer for 9 years. I may have to dedicate a post just to that.

That’s all for now. I hope you are all well and stay cool if you are caught in the heat wave we’ve been having across certain parts of the country!

3 out of 4

I’m not sure how I feel about round 4. Part of me is wanting to “get er done” and part of me is dreading it. I’m still not sure I’m recovered from round 3 and it’s been over two weeks.

Round 3 went well. They had to use a different supplier for the amino acids as their usual one we out. I think this “brand” was easier on me as I didn’t have a headache or stomach pain the next day. I’m pretty sure what side effects I’m having are from the actual Lutathera (radioactive drug). It makes sense that the affect would be cumulative as they are with most chemo/radiation treatments.

Side Effects

My tummy is still on/off sour. I’m occasionally nauseous. I’m very tired most days but it is getting better.

I hope by round 4 (final) I’ll be feeling 100% (well, as much as I ever feel 100%–my 100% is probably 70% of a truly healthy person).

On another note, Utah has lifted the mask mandate! I’m fully vaccinated but will continue to mask-up where required (some grocery stores, etc.). I will admit to loving it when I can go in somewhere without a mask. I hate them. I know some people will continue to wear them regardless of the mandates. I can understand their point of view but it’s definitely not for me!

I see my oncologist next week. I’m sure it’s a “how are you feeling” and a total waste of time. Blood work will be two weeks after that to see if round 4 is a go. I’m feeling fairly positive that it will be! Its actually gone by really fast.

Until next time…

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!

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…

Thoughts on Scans

I have my 6 month CT Scan this morning.  I wasn’t really anxious at all about it.  After all, it is what it is. Why get overly worried about the results when I have no control over them.  Don’t get me wrong, I totally understand Scanxiety and where that comes from.  Especially for more aggressive cancers.  That is anxiety and then some!  I HATE waiting for results.  I loved my old insurance’s online portal because they would post my results within a day or two.  They didn’t wait for the doctor to sign off on them or whatever they do now.

I had changed my apt. to have this scan at different location.  I was in the imaging center one Saturday to pick up my cervical MRI and I asked her how their scheduled looked for today. I was scheduled at the hospital where I’ve gotten the last two or three.  This other place is just an imaging center.  It’s small, quiet and everyone is super friendly.  I need to try and get in earlier so I could get to work.  We had a lot going on today.  I did get in earlier and got to work with plenty of time to get ready for my meetings. Whew.

What I was really thinking about-scan wise, is how we try to gleam something from the tech when we’re done.  Are they acting weird? Super friendly?  Different at all?  Make eye contact or avoid it? Did they see something HORRIBLE?   I bet we all do this.

I’ve only had this happen once.  One time, at a different center, the tech came running out after me to see if I could come back because the radiologist saw something in my liver (they were doing a scan of my lungs, looking for pulmonary embolism).  Granted, I was 3 weeks post liver surgery.  I went back in, hopped up on the table and they shot some more pictures.  The tech then asked me if I wanted to see it.  I was like, hell yes!  I did have some large pockets of air and/or gas, or even infection.  It turned out to be nothing but it really did make me worry.

Thinking back, I’ve only had one tech that was not friendly at all.  I believe she was suffering from morning sickness that day.  I know she didn’t want to hook me up for the contrast and another tech came in and did that.  She had the prettiest red hair….

 

 

4 years

I just passed my four year cancer diagnosis.  It kind of just went by without much thought until now.  It’s hard to believe its been four years.  I’m feeling pretty good.  I have more pain from my neck than anything.  It is probably time for another injection.  I have been having some rib-area pain that is pretty steady.  It isn’t super sharp but it’s not a dull pain either.  It’s hard to know if this is from the liver surgery or something else.  I was told that some people have pain forever after that type of surgery.  It does come and go and is definitely worse when I sit for long periods of time.

My first surgery was July 2nd, 2012.  Right-hemicolectomy via laporoscopic surgery.  My recovery went well and I was in the hospital for 4-5 days.  I can’t remember.  My second surgery was the following February and was a liver resection.  They removed about ten tumors (which left me with about ten small ones).  My remaining rumors have remained fairly stable since.

Next up:  scan on July 20th and i meet with my Oncologist the following week to get results.  He didn’t order any blood work but they’ll do the basics before i see him.

I will let you know how that goes!

 

 

 

It Cured Me!

Can I say how disgusted annoyed I get with cancer patients saying their supplemental treatment or alternative treatment cured their cancer and it will cure yours too!  I know this is NOT going to be a very popular post and I’m not trying to offend anyone but lets be honest… I feel that the only way you can promote this is if you have NOT had any other standard treatment. No chemo.  No radiation!  I’m sure it was the coffee colonic that cured you, not the chemotherapy and radiation that you had!  Seriously, maybe it helped but how can you claim it cured you?  I actually got this advice from a women while walking out of the cancer center one day.  It was about two years ago.  I was still a “newbie” and I said something to her while riding down the elevator together. Something like, “how are you?”  She told me that she had seen her oncologist and that he had told her she was cancer free!  Of course I was thrilled for her and told her so. She then went on to tell me her story.  Colon cancer.  Chemo.  Radiation.  Then she asked me why I was there (I don’t look like your typical ((is there really such a thing?)) cancer patient) so I gave her the brief version.  Rare, Carcinoid, in my liver already, stage IV.  No chemo cause it doesn’t work on this slow growing type…  so she went into her spiel about her coffee colonics and how the cured her!  I just smiled and said “cool.”  I think if it happened now, I’d say something like “yes, I’m sure it was that and not the chemo and radiation that cured you!”  Hey, I’m not saying it didn’t help.  I’m just saying you can’t give one thing and one thing alone (unless that one thing is all you did) the credit for curing your cancer.

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I just read that Coffee Enemas are also the ultimate liver detox!  I might have to look into it after all…

It can also cause proctocolitis (not for the faint of heart):  www.nature.com/ajg/journal/v105/n1/full/ajg2009505a.html

Proponents of coffee enema claim that cafestol palmitate in coffee promotes glutathione S-transferase, which detoxifies the products of tumor cell metabolism, and that the enema fluid stimulates peristalsis and drainage of toxic bile from the gut. Although none of these hypotheses are proven, coffee enema has been used as an alternative therapy for various diseases, including cancer and constipation (1). Complications associated with coffee enema have rarely been reported. There were two cases of death related to coffee enemas that were associated with electrolyte imbalance caused by frequent enemas (2). In addition, one case of polymicrobial enteric septicemia from coffee enema in an advanced breast cancer patient was reported

I guess you can also get addicted to them.  Must be the caffeine!  Woot, woot!

I’m really not trying to be a negative cow here.  I just wish people would realize how they sound.  My old bosses wife also told me to take Do-terra Frankensense oil.  It cured her friend.  I can’t remember what kind of cancer she had but it was a relapse and she didn’t have any other treatment so???

I guess what I want to say is this:  be careful and do your research.  Just because something is “natural” doesn’t mean it doesn’t have possible adverse complications or side affects.

Two years…

It’s been two years (tomorrow) since I had liver cytoreduction surgery (or debulking, as my surgeon doesn’t like to call it)!  How time flies when one has cancer!  I’m writing this today as I’ll probably forget tomorrow.  It’s one of the things I’ve really noticed since my diagnosis: short-term memory loss.  It is actually a known symptom of Carcinoid cancer.  They don’t, of course, no why.

I still get asked from other NET/Carcinoid patients why I decided to have liver surgery when I knew it wasn’t a “cure”.  It’s a long story.

When I was first diagnosed in June of 2012, the surgeon I first saw told me that there was nothing they could do about my liver.  I had about 30 tumors scattered throughout all lobes.  The biggest was just shy of 4 centimeters.  I thought that was that but in researching carcinoid and all the few treatment options, I read about surgeons that do this type of surgery and they said it’s best to cut as much out as possible.  This can re-set the clock and give me more time!  That’s all any of us stage IV cancer patients want — more time (and quality, of course).  I felt that with this surgery I could be buying an extra ten years!

I was really lucky with my surgery.  I didn’t have any major complications. I didn’t even need any blood during or after.  When I went in, I wasn’t sure if the surgeon was going to remove my entire right lobe, where most of the bigger tumors were or just cut out the individual tumors.  He ended up cutting out about 7, ablating (RFA-radio frequency ablation) some and taking a few “slivers” off of my left lobe.  Surgery only took about 4 1/2 hours.  I was in ICU for one night.  I think my total stay was 5 nights.  The only side-effect I had was gastroparesis, where my guts were asleep and I couldn’t eat anything or I’d throw-up (actually, I was throwing up without eating anything).  They weren’t sure if it was the pain meds or not but we finally determined my guts just weren’t working.  I remember I was pretty sick for two days and then it got better pretty fast once everything woke up!

I had the greatest nurses ever!

This was my second surgery.  My first was on July 2, 2012 and I had a right-hemicolectomy.  That’s where they removed a portion of my small intestines, ilium, part of my colon and appendix. They would have taken my gallbladder but I had that removed years earlier.  I had 10 tumors in my small intestines and my appendix was pretty much all tumor.  11 of 13 lymph nodes were positive for cancer but the pathology report said they thought the number of lymph nodes involved was greater but they only biopsied what they could tell was lymph node tissue.

My three year Cancerversary is quickly approaching.  It’s not really something I celebrate but I’m grateful that I’m still here and that things are remaining stable; I feel good and can do everything post cancer that I did before cancer!

Here’s to another 3 (and more)!

Rest in peace Sara.

I wasn’t expecting it so soon.  The sad news that a fellow zebra has earned her angel wings.  I didn’t know her personally and was late to her story, through her Caring Bridge website but got caught-up in her strength and drive to CURE her cancer!

Her story brings up many questions regarding how aggressive should one be in their treatment and how do you know if you should do A or B (or C, D, E, F)?  I know for Sara, her choice was exactly what she wanted.  She fought for it.  She moved to another city.  She battled her insurance company for approval.  It was her only chance for an actual CURE.

Sara was dx’d with mid-gut carcinoid cancer w/mets to her liver.  Stage IV.  Same as me.  She had surgery, sir spheres and PRRT (in Germany).  She also had her heart valves replaced due to damage caused from the high levels of serotonin produced by her tumors.   She was told if it wasn’t for her liver, she wouldn’t have cancer!  I know that feeling although I’m pretty sure my tumor burden is much less than Sara’s was.

Sara decided to seek out a liver transplant.  In her quest to find the BEST, she found two top notch transplant surgeons.  One told her he won’t do liver transplants on Carcinoid patients anymore.  Why? Because 40% of the time it recurs in the liver.  His option was MVOT or Multi-Visceral Organ Transplant. They take the liver, stomach, pancreas, small intestines and part of the colon from one donor.  It’s was described as somewhat like changing the engine of a car.  There is only one place, I believe, that does them and that is the Miami Transplant Hospital.

I’m not going into too much detail as it’s not my story to tell.  Sara sailed through the transplant.  She was released from the hospital in a few short weeks.  She then developed GVHD (graft-vs.-host disease).  I have heard of that with blood cancers and having a bone marrow or stem-cell transplant. I didn’t know it could happen with organ transplants.  It does make sense.  I thought of rejection but GVHD is different.  It is where the donor organ(s) fight for dominance with the hosts.  It looked like Sara was winning her battle but then things turn for the worse.  She died this morning.

She leave behind a loving husband and two beautiful daughters.  My heart breaks for them.

I’m not sue what I would do if given this option.  Take a chance for a cure?  Or take the chance that my cancer will remain slow-growing (until it isn’t), which could be 5, 10 or 20 years?

I know from reading Sara’s blog that she made the right choice for her.