Infusion time

After getting done with the Dr. we went up to the infusion floor and received the chemo; Ramicurimab and paclitaxel.  First was some Normal Saline because they thought I might be a bit dehydrated after seeing the blood results.  Then premeds; antinausea, and benedryl.  This time the benedryl really got to me and I was so woozy that I felt kind of drunk in a way.  Definitely lethargic and heavy.  It was weird and eventually I quit fighting it and went to sleep.  I think I only woke once when they changed the infusion to the paclitaxel and that was another weird feeling when that started.  It literally felt like a wave passed over me from my head to my toes.  the nurses indicated that some patients feel flushing, but I don't remember ever feeling it with such an intensity before...very weird.

I found it funny that after the infusion they just let me get up and out of there.  For the CT contrast they make you wait a half and hour before you can go.  I guess if it doesn't happen during the infusion, then they are satisfied it won't happen later....

CT results and Dr. visit

Got results from Dr. today.  The results were, ok I guess.  limited growth in some places, some growth in others.  My Dr. considers it stabilization and wants to proceed.  I think of things as being more urgent and that's what I told him.

I told him before we continue with the trial, I wanted to talk about other options and things.  I started by saying that I really felt like he and I are arguing about any of the next steps that I bring up to him.  He explained that he's trying to help and isn't trying to argue with me, but that the options I'm bringing are uphill battles.  I understand that, but I don't think he understand that if there are things I can do to help or look into, I will.  In this conversation, we ended up going over how difficult it may be for me to get on an off label drug and how he is not very convinced of it as viable for me.  I'm still not convinced, but I think we are back to communicating a little better, and I decided to go ahead with the trial to see if it helps.  I did also ask him to look further into some of these other options I want to try.

I really do think he doesn't want to have the fights with insurance and is so convinced of the answer they would give that he is resistant to even trying.  I just want him to at least try, and in a round about way, I think I've got him at least looking into these other options.

The discussion ended with me just reminding him that I know he's the expert, but I'm the patient....That seemed to at least give him pause.

CT abdomen and chest with contrast

Got CT today, uneventful.  Still having what I believe is kidney pain, but the intensity varies and I've been able to do ok with it.  Not taking any pain relievers.

Will see Dr. tomorrow, look at scans, review pain, talk about next steps and have a chat about how I feel like I'm having to fight with him about my ideas for what's next.

More pain

Pain woke me up last night.  Seems to come and go.  I contacted my Dr. about it and he just wants to wait for imaging...  which I get on Tuesday.

Because of the pain I've decided to stay up here so I don't have to commute again...

Final research draw for PK's

OK, finally the tedium is past for all the blood draws I had to do.  No more multiple trips up here just for a little blood.  That will be nice.

I did start having some pain in my right side Wednesday, but it seemed to go away.  I know I have some tumor that was obstructing the ureter that drains my kidney, my doctor says that can cause pain, so maybe that is what that is.  Something to keep an eye on.

HIPEC

At the beginning of my journey with this disease, my brother and I shared the though of "couldn't the surgeons just open me up, remove the tumor, and then flush the area with chemo?"  At the time I wasn't aware of the HIPEC procedure.  HIPEC  It looks almost exactly like what we had discussed and definitely like something I would have liked to try.  In my case I think it could have been accomplished in a localized manner at my original tumor site; a localized hyperthermic chemotherapy.  So, in that case it would be less gruesome than the full HIPEC procedure, but possibly have been beneficial.  The only complications I can envision would have been the proximity of the nerve and major blood vessels in the area.

I don't believe they would allow me to have HIPEC now because of the mets in my lungs, but I plan to ask about it or something similar.

Because I don't feel the current standard of care in cancer is nearly as aggressive as they think it is, I keep looking at different options, trying to see how I may have benefitted from them and am creating what I think is a much more aggressive approach.  In my mind the current standard of care is designed based on patients that were either not very healthy to begin with, at late stages in there lives, and with a generally passive mindset.  what I think is a good roadmap is outlined here:  A better approach?

If I were asked to recommend how to proceed

I can't help but look back at my experience and think the medical industry should have helped me do this more aggressively.   Here is what I think would have been a better, aggressive approach with better opportunity for results.  My philosophy is more aggressive yet preservative and minimal impact/invasion approach.  This is a work in progress, subject to change, and I doubt your doctor would go for it, but the more we ask, maybe we can change the approach to cancer care...

1. MRI or PET scan- this is a great imaging study that shows great detail and differentiation.  Don't go into surgery without imaging.  PET is great for showing tumors.
2a. High-intensity focused ultrasound (HIFU).  A too new for the west treatment that is totally noninvasive.  Shown success in China.
2b. Cryoablation - this is a novel, new nonsurgical method of tumor destruction.  Apparently its more for smaller lesions...
2c.  Tumor Assay - Probably one of the first things they are going to have you do is chemo, then surgery.  If  you get Chemo before surgery, you will have to wait 4 weeks before the tumor assay would be viable, so it may be better to have surgery, send the sample for assay, and then get their input for chemo.  Tumor Assay isn't generally accepted as standard of care and will probably cost you out of pocket - I've seen prices around 5000USD.  A small fee compared to what you're going to spend going through the chemo's that may or may not work for you.
3. HDAC inhibitors.  These are starting to be more popular targets in the fight against cancer.  Synovial Sarcoma seems to be especially vulnerable to these at least in mice and on slides, at this point.
4. anti-angiogenic drugs - these aren't typical first line treatments, but if possible to acquire, I think much better than cytotoxic drugs.  In the case of Synovial Sarcoma, Votrient can be effective, but doesn't seem to endure long, certainly not long enough.
5. Localized hyperthermic chemotherapy - if you have a surgery to remove a tumor, rinse it out with chemo.
6. Immune therapy - a lot of people, me included, believe cancer results from an immune deficiency.

Another Research Draw

SO many draws...  If I didn't have to commute, this wouldn't be such a problem.  I was late for todays draw, getting stuck in the worst traffic I've seen in ages... makes me appreciate where I live now.  Got it out of the way and will be here for Fridays draw...

more research draws

Ruined a nice weekend with a long commute for a blood draw.  No problems.  This time I let them use my port so I can save my "beautiful" veins...

another draw

Did a whirlwind flight up and back for a blood draw.  no problems.
My problem with oncology  in this trial is purely logistics.  It's ridiculous that I can't have my blood drawn locally and sent fed ex to where ever they want them to go.

Big thank you to Todd for the Buddy passes that allowed me to get really cheap flights!

Last draw this week

Another little poke this week, then I get a few days off.  Going home, going back to work.

So far the only side affect I've experienced is a nose bleed.  They indicated that was a more common one from Ramucirumab, so I wasn't totally surprised to get one.  Otherwise, this drug is treating me just fine. 

They expect I'll experience cytotoxic side affects when I get a cytotoxic drug...the paclitaxel.  I potentially have the option to take that.  I'm hoping I'll have a good response on the Ramucirumab so I can tell them I don't want the paclitaxel.  From what I've read about the stuff, it really doesn't excite me.  I mean, neuropathy...  That would suck.  But really, I may be a bit overestimating how well I've done on chemo so far, but it does seem like I haven't been terribly impacted by them in the past. 

Anyways, carrying on.

Another research draw

More of the same...

Follow up draw

Another draw today.  I get a special blood vial and my paperwork reads "Priority Research"  I guess it makes me feel important...

Trial Day 1

Today was a long day.  Started with a final meeting with my Dr. before getting started on trial drugs.  Quick chat a review of data.  Spoke with research coordinator and confirmed participation.  She wanted to make sure I knew I had the option to quit at any time.

Did a final pre trial blood draw and left the IV in for the additional draws they would be doing the rest of the day.  Reported to Clinical trials unit and got a nice little room for the next 7 hours.  Started pre medication with a large dose of benedryl (50mg) and some other premeds I don't recall.  That much benedryl typically makes people drowsy and I was no exception.  I stayed awake for them to access my port and infuse the Ramucirumab (505 mg) for an hour.  Shortly after that I dozed for a couple hours, waking only for a couple blood draws.  They kept doing blood draws every hour until late.  After the last one they sent me on my way, but I have to come back for more draws over the next couple days.

Ramucirumab trial starting soon

I finished pre qualification for this trial today.  Just had to get an EKG, then sign consent, and get a most recent CT for baseline measurement of tumors.  My insurance was denying the request for CT of chest an abdomen, because I had one only about 3 weeks ago.  They were able to reverse the denial for the abdomen, but the chest they wouldn't, so the research sponsor has agreed to pay for it.  That's been nice...

Anxious for trial start tomorrow...