Biopsy results

 Alrighty, result time.  So since there's apparently a law now that requires test results to be released to the patient in a certain amount of time (wether your doctor has gone over them with you or not) I got the first set of results in a few days.  The first to come back was the flow cytometry.  Those results made me nervous because in bold type right at the top it said basically that the results weren't conclusive on their own due to poor cell viability.  So here I am thinking, oh shit, what am I going to do if they can't confirm that it's still Hodgkin's?!  And then I gave myself a pat on the back for refusing the needle biopsy, LOL.  If there was crappy results on this one when they had a bigger sample, there's no way they would have gotten what they needed from a needle aspiration.  

About a week after those results, the pathology report came back.  Thankfully this one confirmed that it's still Hodgkin's, and it also confirmed that it's CD30 positive (which is what I would need for the clinical trial).  I finally saw my oncologist to talk about the game plan.  Since an Allogeneic transplant is off the table right now as far as I'm concerned, the plan is to go back on Nivolumab (immunotherapy).  He said that the clinical trial is not an option right now because they don't have dates for it yet.  It's looking like it won't be ready to roll until the beginning of next year at the earliest.  So I'll go back on immunotherapy as a bridge to whatever I end up doing in the future.  Hopefully I'll respond to it like I did last time and it'll put me back into remission.  I had another CT scan done a few days ago of my abdomen and pelvis for a baseline, since the last scan was just of my chest.  

It's nice to have a game plan finally.  I'm starting back up next Friday, so hopefully the infusions will start doing their thing quickly.  It's a 30 minute infusion every four weeks, and I usually tolerate it pretty well.  I'll do my best to keep everyone updated regularly.  Thanks so much for all the positive thoughts and prayers!! ❤️😃❤️

Biopsy take 2

 I am such a procrastinator!!  I know that I'm way overdue on updating this when I start getting messages asking what's going on, LOL.  So here it goes!  So this time around, I had a different anesthesiologist, which was probably a good thing.  She didn't want to do a nerve block like the last one did, so there wasn't as much prep before they took me back.  I woke up in a ridiculous amount of pain, and in retrospect I really wish she would have done the block.  But it is what it is.  When I was coherent enough to talk to my doctor, I found out that he did actually do a thoracotomy.  So between that incision and the chest tube, pain level 12, LOL.  He said that the mass was literally as hard as a rock, so he was having a hard time getting samples from it.  He decided to just cut me open and excise the whole mass to ensure that we got a diagnostic sample.  It was about 5 x 3.5cm, which is larger than I realized. 

**** Also, warning ahead of time if you're squeamish, I added a couple of pics at the end of the post, so don't keep scrolling when you get to the flower pic if you don't want to see!! 

So due to the thoracotomy, I knew I was going to be stuck in the hospital for more than one night.  I spent most of the evening/night in agony, which was awesome.  They had put me on a morphine pump with a PCA (patient controlled analgesic), so you'd think I would be a happy camper, but alas as we've already established... I have horrible luck.  Morphine doesn't really work well for me for some unknown reason, so since I was still in so much pain they decided that they were going to switch me to Dilaudid before I went up to my room (it's almost midnight at this point).  The nurse was switching out the meds and commented that I'd only used the PCA twice and asked me why I wasn't pushing it every ten minutes like I could.  I looked at her like she was nuts, and told her I'd been pushing it as much as I could.  So she switched the med, and had me push the button again.  It was at that point when she realized that the button on my PCA was malfunctioning... So yeah, that would explain why I was a hot mess.  Then another nurse commented that Dilaudid tends to work better than Morphine for that kind of procedure/pain, which made me wonder why the hell they didn't start me on that from the beginning.  Ugh.  My doctor was so pissed when he heard about all that in the morning.

Anyway, I got to my room and got all settled.  I had a roomie, which I wasn't really happy about, but at least I wasn't spending the night in recovery again.  I ended up staying for two nights, which wasn't too bad.  It was a pretty uneventful stay, which is a good thing, LOL.  Mom and dad came to visit and brought me coffee, so that definitely helped my mental state, haha. I felt so bad for the nurses though... They had six patients each, which is definitely too many.  I should have done this post sooner, because now I don't remember much else from my stay, LOL.  My criteria for discharge was based on my chest tube, and my pain meds.  I basically had to stop using my PCA to show that I would be ok pain wise without having it.  So once I was done with that and they took the tube out I was good to go.  I had to take a few days off from work to recover, and I had restrictions on a few things as far as physical activity, but I managed ok.  I appreciate all the kind words and messages during the whole ordeal!! ❤️❤️❤️ 

If it can go wrong...

 If it can go wrong, it will... At least when it comes to me it seems, LOL.  Here's a quick little update for anyone interested.  I went in for my surgical biopsy last Monday (finally!!).  I was quite impressed with how things were moving along.  I got registered, and within ten minutes I was being taken back to get prepped for surgery.  The anesthesiologist wanted to try a nerve block before surgery, which is something new since the last time I had this procedure done.  He said that about seventy percent of the time a nerve block can reduce post procedural pain for twelve to sixteen hours.  With the amount of pain I had after the last VATS, I was all for it!  So he and the nurse anesthesiologist got me all marked up, and she gave me IV pain meds before he got started.  That was the last thing I remember before waking up in recovery. Usually I'm awake when they take me into the OR, so that was kinda weird, LOL.

So I wake up, see my parents sitting beside me, and the doctor was also in the room.  I remember briefly thinking, wow!  I've got no pain at all aside from my throat (and an impeding migraine), that nerve block was amazing!  Hahaha, silly Briana... The next thing I remember is hearing the doctor say the words "aborted biopsy", which would be why I had no chest pain.  So here's the fun part in a nutshell.  While I was being intubated, I ended up getting a mucosal tear from the endotracheal tube, which caused bleeding and swelling (and one hell of a sore throat).  The bronchoscopy scope that they use for the procedure is much larger, and they had a hell of a time getting it in due to the tear.  Once it was in, they closed off air flow to my left lung to see how well I would perfuse with my right lung, and my oxygen saturation dropped into the low 80s.  That's when they decided to abort the biopsy.  So, yay for me. 

There were no beds available in ICU, so I (along with two other patients) got to spend the entire night in recovery.  10 out of 10 do not recommend.  There was absolutely no privacy, and I was miserable to say the least.  They also kept me NPO (nothing by mouth) in case my airway decided it wanted to close up.  So I hadn't had anything to eat since midnight, had a killer sore throat, a migraine and horrible nausea. Fun times.  I pretty much spent the entire night either sleeping or staring at the curtain that enclosed my little space.  They finally gave the ok for food (breakfast that I couldn't swallow) in the morning, and I was discharged around 11am.

So that was a fabulous experience, and now that my throat is all healed up, I get to do it all over again tomorrow!  So fingers crossed that there are no screw ups this time around and we can get this done!!  Thanks so much for all the support!!  Hopefully my next update will be a bit more positive!! LOL ❤️🤞😃

Time for another update

Another overdue update, no way! 

I'll try to get through it without being too long winded, LOL.  I left off with a plan to go to Roswell to re-establish care and get their opinion on biopsy, which is exactly what I did.  It was nice to see some familiar faces there, although I think we all wish it was under different circumstances.  I ended up being there most of the day, between a (now standard) PT eval, blood work, and a visit with my doctor.  I didn't end up with many answers at that point, because of course they had received everything they needed from Guthrie, EXCEPT my PET scan disk.  So I was told it was being overnighted and that if I hadn't heard from them in a week, to call and follow up.  So one week later I gave them a call, and I was told that they were reviewing things that day.  Yep, sure they were, LOL.  Anyway, they called back a couple of days later and said that they recommended the dreaded CT guided needle biopsy.  Which to refresh your memory, is the one that Guthrie wouldn't do because they don't think they'll get a diagnostic result.  So I didn't quite understand why Roswell thought they'd be able to work some magic, but whatever.  I met with my local oncologist the following morning and let him know what they had told me.  He said that he thought I should go ahead and have it done by them, because even if I've got a fifty fifty shot of avoiding a surgical biopsy, I should try.  I told him I'd think about it and let him know.   Realistically, the odds of success are definitely lower than fifty percent, just FYI.

So, I thought about it (not very hard honestly) and I got ahold of my very first oncologist (the one that I think walks on water and has saved my ass multiple times) to get his opinion, also letting him know that I was leaning towards just doing the VATS (video assisted thoracic surgery) biopsy.  He agreed with me that the odds of them actually getting something diagnostic were very slim, and that I should just head straight for a surgical one.  Ultimately the decision was left up to me by both teams, and I've decided to have the VATS done.  The surgeon that did my last one (this will be my third) is still there, so I had a consult with him a few weeks ago to go over everything again.  I've probably already explained the procedure before, but I'll explain it again just for the hell of it, LOL.  Basically, they go in between my ribs on my left side and deflate my left lung to get to the mass to take samples of it.  If all goes well it should just be one night in the hospital because they have to leave a chest tube in post op.  There is the potential for complications due to previous radiation to my chest, and adhesions (scar tissue) due to the previous biopsies, which could include a thoracotomy (larger incision) or lung adhesions, potentially increasing my one night stay to 5-7 days.  But it wasn't an issue last time, so hopefully it won't be an issue this time either.  Anyway... It's scheduled for Monday June 13. 

As far as the game plan after biopsy, it of course depends on the results.  They will be checking to see if my lymphoma is positive for CD-30 markers along with confirming that it's still Hodgkin's and not a secondary type of cancer (very slim risk due to the way it's presenting).  If it's CD-30 pos, I may be eligible for a clinical trial that they're putting together at Roswell.  It's a trial for CAR-T cell therapy .  While I'm not really keen on the idea of being a guinea pig, an Allogeneic stem cell transplant is not on my list of things I want to do, pretty much ever, so my options are limited.  There's always the option of just going back on immunotherapy, but my doctor at Roswell is not optimistic that it will keep working for me.  Le sigh.

Well, so much for not being long winded LOL.  If you've stuck with me to the end of this, thanks!  I'd appreciate some positive vibes and happy thoughts being sent my way next week!  I'll probably be doing more frequent updates on TikTok if you follow me there (@brianatknits), but the more in-depth (but less frequent) updates will be here.  Thanks for much for your support!!  I really appreciate it!!  ❤️❤️❤️

Results and a quick update

The moment you've all been waiting for... Bone marrow biopsy results!  LOL  So good news on that front, everything was negative, woo hoo!  So at least we know that nothing has spread as far as that goes.  Now for more fun...

There are two spots in my chest that have grown, and (to the best of my knowledge) at least one of them needs to be biopsied to confirm that it's still just Hodgkin's.  The problem with that is that they're both in pretty crappy locations.  Hodgkin's is notoriously difficult to accurately biopsy with a needle biopsy (either through CT or bronchoscopy in my case) and due to that I've had two surgical biopsies in the past.  Our local teams with interventional radiology and pulmonary do not think they'd be able to get good samples (just my luck) so my doctor is requesting that the team at Roswell look over my PET scan to see if they've got any ideas up their sleeve.

I've got an appointment there in a week for a visit with my doctor, as well as a PT evaluation, so hopefully I'll find out more then.  And who knows, maybe I'll have a surprise biopsy, LOL.  I'll keep everyone posted.  Thank you so much for all the kind words, thoughts, positive vibes and prayers!  I appreciate all of you very much!! 

Did you miss me? LOL

 Well hello there!!  It's hard for me to believe that it's been so long since I've posted an update on here, but I was taking the "no news is good news" approach, LOL. So that means that it doesn't take a rocket scientist to figure out that an update after such a long break means a little bit of bad news.  So I guess I'll start with a brief recap of things since my last post.  

I ended up continuing on immunotherapy (Nivolumab) for a full two years on it's own before we decided to stop.  It's still not viewed as a curative treatment, so the plan was just to monitor things with regular blood work and CT scans to make sure my remission was holding.  And it did, for a pretty good stretch.  My last treatment was in October 2020, and everything continued to stay stable until the CT scan that I had at the beginning of March.  That scan unfortunately showed two spots that had increased in size by about 1 cm each.  I then had a PET scan done a couple of weeks ago to check to see if there was activity or if it was just scar tissue.  Bet you can't guess which one it was! 

So now on to the fun part... Biopsies!  My doctor explained to me that due to the locations, my scan would need to be evaluated by both interventional radiology and pulmonary to decide which spot could be accessed better (and by which method) to get a good sample.  I don't have the best history of successful biopsies, so there's that.  He also said that he wanted me to get another bone marrow biopsy done.  I was thrilled to hear that because they're so pleasant to have.  Oh, and he also wants me to go back up to Roswell to re-establish care up there which will most likely entail discussing other treatment options.  Those options (aside from a clinical trial if there are even any going right now) will most likely be CAR-T cell therapy or an Allogeneic stem cell transplant.  Neither of which are on my want-to-do list at any point in the near (or distant) future.  As long as there aren't any surprises from my biopsies, the plan will probably be just going back on Nivolumab infusions since it's been pretty successful for me in the past.

All that being said, tomorrow is my bone marrow biopsy and aspiration, so that will be fun.  And I just heard this afternoon that the radiologist looked at my PET scan and said that he felt that the spots were too small for him to successfully biopsy, so that means the CT guided needle biopsy is off the table.  If pulmonary doesn't think they can get to the spot (there's only one accessible for them) with a bronchoscopy, then I may be looking at another VATS (surgical) biopsy.  That's a super fun one, but at least I know they'll get what they need.  It's frustrating that I even have to get one because the odds are extremely low that it's something other than Hodgkin's, but I don't make the rules, LOL.

So, I think that about sums it up... If you've read through my babbling this far, thank you!  I appreciate any positive thoughts you may want to send my way!!  I've got an appointment in a week to go over my bone marrow biopsy results, so I'll post another update then. ❤️❤️❤️

Procrastination is my middle name

Hey all!  I can't believe it's been so long since I updated this!!  Sorry!!!  Since quite a bit of time has gone by, I'll try to give you the abridged version.  My last post left off before my second biopsy.  I had that done, and it confirmed the relapse.  The plan was to start treatment again, going back on Nivolumab since it worked pretty well before.  They were also going to add Brentuximab back in again because the combo of the two drugs has been showing promise.  I previously had Brent after my stem cell transplant back in 2015.  It was also decided that since I was on Nivo for a year last time, that they would keep me on it for longer this time in hopes of a longer period of decreased activity.  I had the first treatment done of both drugs in August with no issues.  Nivo is given once a month, and Brent every 3 weeks, so my second treatment was just Brent.  Well... apparently my body decided that it no longer likes that drug, because 15 minutes into my 30 minute infusion I started having difficulty breathing.  My O2 SATs dropped down to 85, and I was put on oxygen and pumped full of benadryl and steroids.  After talking to my doctor, we decided to try it again three weeks later, but with premeds on board to help prevent a reaction.  Yeah... that didn't work, LOL.  The exact same thing happened halfway though my infusion again, so as of that appointment I was told that we were just going to continue the Nivolumab on its own.  I had a PET scan in Nov to assess how the cancer was responding to treatment, and for the first time that I can recall I had Complete Response (CR) to treatment.  No activity was detected at all!!  I'm not sure if it was the brief combo of the two drugs that did it or what, but woo-hoo!

I have continued with the Nivo once a month since then.  The plan was to do a repeat scan in three months to see if things still looked good, and if they did then we were going to start scanning every six months instead of three.  So... I just had a scan a couple of weeks ago and to my amazement, it's still clean!  So I'm just going to keep trucking along getting my infusion once a month until we decide that it's been long enough, and hopefully things will remain quiet.  Thanks again to everyone for your continued thoughts, well wishes and prayers.  Sorry it's taken me forever to update... apparently life gets in the way sometimes!  XOXO