Scan Results and Quick Update

Hey there!!  So I had another CT scan done yesterday, yay for more radiation!  LOL I met with my doctor this morning before treatment to go over the results.  The scan still hadn't been read by the radiologist, so my doctor pulled up the last one to compare it to the new one.  There's an area that remains mostly unchanged, but that is most likely just due to scar tissue from radiation.  But when comparing the scans side by side, it's obvious (even to me) that the tumor is starting to shrink!  Woo-hoo!  I don't have exact measurements but I'm sure I'll get them at some point.  My blood work still looks good, aside from my poor, poor thyroid, lol.  So I'm getting and increased dose of Synthroid again.  My TSH levels are at 61... down from 125, so we're at least going in the right direction.  And I'm also starting another med called Atarax that's supposed to help with the insane amount of itching that I've been dealing with as a side effect from the Opdivo.  I'm more nervous about that one, since the literature says it can cause long QTs on an ECG, and I've had that before when I was at Roswell.  Caused chest pain and I had to take a Nitroglycerin tab to get it to chill out... and that stuff tastes horrible and gives you an awesome headache.  So needless to say, I'll be taking it in very small amounts until I am sure that it's not going to cause another QT issue.  So, aside from that I'd say I actually got some good news for once, LOL.  Hopefully it'll keep coming!  Thanks everyone for being so supportive as I continue this very long and interesting journey trying to kick my cancer's ass!  I appreciate all of your kind words, thoughts, positive energy and prayers!!  You're all amazing!!  XOXO

Long overdue update

First I'd like to apologize for not updating sooner!!  The summer just flew by!  So I think I left off on the last post waiting for insurance approval to start the Nivolumab (Opdivo).  They approved it, pretty quickly.  I was very surprised!  I just had my fifth infusion earlier this week... time really flies!  So, basically... the Opdivo is a 1 hour infusion every other week (initially I thought it was only 30 min, but apparently I was wrong, lol).  It's supposed to be easier than chemo, since it works with the immune system to strengthen it to fight the cancer.  Of course where I'm concerned, if there are side effects I'll end up getting them!  The first infusion kind of sucked, to put it bluntly.  I was nauseous, exhausted, had a skin rash, extreme back and neck pain for a few days, pain in my tumor site, lack of appetite, severe cramping in my legs and feet, etc.  Though I do have to say, it was still much easier than chemo.  Luckily, the first infusion was the worst, and they've gotten easier since.  The main issues I'm dealing with are muscle cramps, fatigue, tumor site pain and occasional nausea.  Not too bad overall.  Oh yeah, and my poor, poor thyroid.  It's pretty much shot already from the infusions, so they started me on synthroid yesterday.  Awesome.  

I had a CT scan done last week after the 4th infusion to see how things were progressing.  Apparently there is some one dimensional growth on the scan, but my doctor said that it's essentially stable with no new disease.  From others I've talked to that are on this regimen, it's not unusual to have things flare up slightly... the "growth" on the scan may just be inflammation from the Opdivo doing what it's supposed to.  For now we're going to keep on truckin' with the infusions.  I'm not sure when they'll scan me again.  One thing I did learn after my CT, is that I'm absolutely done with having an IV started for contrast.  I had a horribly painful site reaction to the injection, and still have a hard lump there over a week later.  Next time I'm going to the cancer center first and having them access my port so they can use it for the contrast.  My arms are totally over needles.  I have a reaction every time I have a butterfly used... not sure if I'm allergic to something in the plastic catheter or what, but it sucks, lol.  So anyway, all in all, I feel pretty good most days.  I'm lucky that I'm tolerating the Opdivo well, and hope it works.  Thanks again to everyone that's rooting for me!!  You rock!  XOXO

Scan Results and Update

Hi there!  Thought I'd post an update for anyone curious, since I haven't posted in months.  I had a PET scan done earlier this week and saw my doctor so we can figure out what the plan is going forward.  The scan showed that the mediastinal mass I have is still growing... now up to 4.5 cm.  I also have some activity in a hilar node, which is a new spot (still in the same general area).  I've been having more "twinges" in the same spot for a couple of weeks now, so I can't say that I'm surprised at the scan results.  The next step is for me to start Nivolumab (Opdivo) which is one of the immunotherapy drugs available for my current situation.  It's a 30 minute infusion every other week.  After I have four treatments, I'll get a CT scan done so we can see if I'm responding the way I should.  If things go well, there's a possibility that this drug can put me in to remission.  If I get to remission, I'll most likely get the infusions for a year, unless I develop side effects that prevent me from continuing.  I'm optimistic that this will work, and I'm hoping that the fact that I've been postponing it to let my body recover from everything it's been through will be an advantage.  According to my blood work, my numbers are pretty much back to a normal range, with the exception of my iron levels, which are a bit low.  And we've also discovered that it looks like I now have alopecia due to all the stress my body has been under.  I'm hoping that someday my hair will start to grow back, but it's not looking like it's going to happen anytime soon, if at all.  I'm now just waiting for insurance approval for the Nivo, and then we will get everything rolling.  Once again, thanks to everyone for your kind thoughts, words and prayers.  I really appreciate it!  XOXO

Scan Results

Well... I saw my oncologist today to get the results of my PET scan.  I didn't hear exactly what I was  hoping for, but what can ya do.  The mass in my chest has grown since the last scan.  Not by a ton, but about 30%.  The SVU level at my last scan was 7.1, and it's gone up to 7.7.  So, more activity... which is a bummer.  Thankfully though, there are no new spots anywhere.  So I'm back to debating between continuing to do what I have been, or starting the Nivolumab infusions.  At this point, since I still feel good and am not really having any symptoms, I'm leaning toward not doing the infusions yet.  If that changes, I might start the infusions.  I've been pretty diligent with my diet and supplements, but there are other things that I started doing in the beginning of my more holistic approach that I've been slacking on.  So... time to buckle down and get to it.  I see my doctor again in six weeks for another checkup and more blood work.  In the meantime, I must think happy, positive thoughts, LOL.  Thanks so much to everyone for your support, it really means a lot to me, and I really appreciate it.  XOXO

Time for an update!

Happy New Year!!  I saw my oncologist today, so I thought it would be a good time for an update.  My blood work still looks good, and we decided that we're going to do another PET scan in 6 weeks.  So I've got 6 weeks to keep trying to kick this cancer naturally, and hope for the best.  It's been two months since I changed my diet, and within the first week, all of my little "twinges" from my tumor were gone.  Basically, I'm doing 100% organic- heavy on the veggies and no sugar, no dairy, no soy, no processed foods.  It's challenging, but I've been doing well.  I'm still in the process of detoxing from all the crap that's been pumped into me for the last three years... and detoxing is no fun!  Within the first week of my diet change, I had a horrible rash on my body, and swelling on my face.  I looked awesome, LOL.  Luckily that only lasted about 2 weeks.  My hair is also falling out again, and since my health care providers and I can't find a reason for it (blood work is good, thyroid is good, etc.), I'm attributing it to the detox still.  Since the skin is the largest organ a lot of the nasty stuff works its way out through it.  Makes sense to me anyway!  I gave up last week and had Chad shave my head again.  Frustrating, but whatever... it'll grow back.  I started seeing a naturopathic doctor and she's got me on a bunch of herbal and homeopathic supplements.  Thankfully one of them is for hot flashes, which have drastically decreased (wo-hoo!).  I've been doing all sorts of other things to try to strengthen my immune system to get rid of this cancer... chiropractic care, essential oils, quantum acupuncture, reiki, massage, CBD oil, vitamin C therapy, essiac tea (just to name a few, lol).  I don't know if it's working (but I'll find out soon!), but I feel fantastic!  I have so much more energy, and I'm staying as positive minded as I can.  I've removed almost all chemicals from my home, and am using as many non-toxic products as I can get.

My schedule seems so busy between all these different appointments and working (even though it's not that often).  I'm very lucky that I have such a great support system!  And speaking of support... all these natural treatments add up pretty quickly, and can be pretty expensive!  I'd like to again say thank you to Leslie for raising money for me with a raffle she set up.  Thank you to Bethany for starting a GoFundMe page.  Thank you to Laura and everyone at the Hibernians for the spaghetti dinner benefit that was held for me in December.  And thank you to everyone that has sent me cards, gift cards, positive thoughts, good vibes, and prayers.  I wouldn't be able to do this without all of you, and your support is overwhelming!  Thank you!!!  XOXO