Another 2 month follow up

I had my most recent followup/monitoring visit today and the results were good enough.  They are still indicating that the trial I am on is working.  Too slow for me, but as long as we can hold the sarcoma stable and prevent progression, it's good, AND I plan to beat this sarcoma next year(2014) as some of the trials coming up are really promising. 

What did my doctors like the most though my weight.  Since not having any complications or infections to deal with, I've been able to get my weight back up and they are really pleased by that.  It neither here nor there to me, but it's a whole lot better than the past couple infections I've had.

More promising techniques

I've been a fan of ablative techniques that don't use radiation since I found out about them late in my treatment plan.  The first I was interested in was Cryoablation, which I was disappointed to find out that I didn't qualify for...part of my frustration with the western medical industry, but that's another story.  I had seen a video about an Israeli researcher who was using ultrasounds to ablate tissues and it seems very promising.  I just recently read a medical publication that identified high-intensity focused ultrasound (HIFU) that had successfully treated a patient in China who had SS.  That is awesome, but...how does a person go about getting treatment in China??? 

That said, why are we dragging our feet so much on an old technology used in a new therapeutic way?  Ultrasound has been used to relieve pain and promote healing in tissues for years.  It is also a primary diagnostic imaging tool.  Taking it a step further and evaluating it as an ablative technique is a sensible and promising method to destroy cancer in a safe non invasive manner.  Hat's off to China for adopting it so readily and treating thousands of patients already!!!

2 month follow up on trial

Well, Much to my surprise I  received a bit of good news today from the doctors.  I'd been expecting that my results wouldn't be that good considering all the difficulties I've been having on this trial.  That, and I just haven't felt anything that would lead me to believe that I'm benefiting;  I've even considered that maybe it's not working at all. 

Despite all those anxieties,  the doctors are pleased that I seem to be having so response to the drugs and they are seeing necrosis of the tumors.  Now I know that tumor necrosis is also a factor of tumor growth outpacing it's blood supply, but in this case they believe it is a result of the drugs.  I just wish the symptoms and side effects I'm experiencing would start to lessen.

Oddities that make me wonder

On one of my recent transfusions of blood due to sever anemia, I was told that my blood type is very rare.  I didn't really think much of it at the time, but since then I've been considering...  I have this, what I'm told is a, rare disease and now I'm being told I have a rare blood type; could there be any correlation?  It doesn't seem like medical science has even looked into it very closely.  Also, I'm wondering are there other rarities in my personal biology that are markers or predispositions to my disease?  As in my blood typing, B-, just look at the "Blood Types and the Population" at the red cross website, the only blood type more rare is AB-...  so I'm drawing that perhaps my rare blood type correlates with my rare disease.

One study they have done for the correlations between biology and disease presentation is in the case of cervical ribs. The study indicates that of the patients reviewed, there was at least some degree of correlation between cervical rib presence and the incidence of disease, in my disease case 24.5% .  I don't know if I have cervical ribs, but I plan to ask.

A lot of promising research

A lot of promising research has been coming out lately and it has helped to get my spirits up.  I definitely feel like things could be on the verge of eliminating most cancers, but I still have to be cautious since there have been so many promising attempts before.  Never the less, here are some that I've been reading about, related specifically to Synovial Sarcoma:

Orphan Drug Status Granted to CGTG-102

Anti-Wnt Breakthrough

And not specifically Synovial Sarcoma, but still could be applicable:

Identification of loss of tumor suppression antibody

Day -1

Today is my last day before a long stint, about a week, in SF which will involve several tests and blood work, the administration of both drugs, and then I should be on a weekly basis for the rest of the this first cycle of the trial.

Day -3 and beyond

So today I am on lead in Day -3.  It is a no drug day, and I'm feeling fine, a bit worn out from the traveling.  I returned from a round trip to SF yesterday, day -4, at 11:30 last night.  I won't be back on drug until Day 1, Friday, when I get both drugs AND a lot of tests.

Day -4 I had to be there so they could draw from PK's and PD's of the drug.  I napped most of the time, but it wasn't very restful with all the interruptions.  They take blood several times and do a bunch of EKG's watching the Qt interval which is a common side effect of this drug.  I didn't feel as fatigued by the drug, but I was napping anyway.

Day -5 and -6 were kind of rough.  I felt very fatigued and ended up sleeping a lot.  Also, the drugs seemed to have a laxative effect so I had to have a movement frequently and urgently.  Other than the fatigue I didn't have any problems with bleeding, fever, chills, or anything that they normally ask about.

Finally Part 2

I probably should go into detail about how much trouble I had getting on the most recent trial, and maybe I will in another post, but right now I'm just so happy to say I finally was able to meet all their silly requirements to participate and today is the second day I've been on trial...  I'm in the lead in phase now which means that I am taking the newest drug everyday for 4 days.  Once the actual trial starts, it is on a intermittent schedule.

The one thing I will say about getting on this trial is that if I was asked what hell was, I would say it's what a late stage oncology patient goes through; trying to get on a promising trial and repeatedly having something come up that is infuriatingly close but prevented by a bureaucratic entities strict adherence to protocol and guidelines.

A promising article

Anti-CD47
Anti-CD47
The thing I will say about this promising breakthrough/magic bullet is that I've seen at least one very promising target in oncology turn out to be just blah, and the latent side effects make it undesirable to me;  NY-ESO-1 anyone?!??!?  Still, I'm hopeful this anti-CD47 takes off and is a successful target for oncology, I'm convinced the immune system can be harnessed to beat this terrible affliction and it can durable.

Right on time

Unfortunately, Tuesday night I started to develop pain...I haven't gone to a Dr. because I'm sure  they'll just give me pain meds and I've got plenty of those and the more emergent issue, (hydronephrosis) can be relieved if the trial works, otherwise I'd need a stent placed.

This whole waiting bit may have gone on too long, but if they'll move quickly in SF, and I have good response on trial, it shouldn't be too bad.  I just hope they will have a slot open on the trial, which I'm lead to believe they will, and that they will get me started the same day, possibly.

Pain is in abdomen and back in the kidney region.  Abdominal pain is weird, feels like a pulled muscle or something.  Kidney pain is expected due to hydronephrosis and is the more sever.  If I don't move none of it bothers me, but if I have to bend or twist it's pretty bad.  Tylenol is working for the abdominal pain, but less so for the kidney.

Finally

Had some trouble getting a hold of SF again for this trial I want to get on.  I missed the single call back they made to me and hadn't gotten another after repeated attempts to reach them.  Sure, busy, but maybe also someone is out of the office, I don't know, but I'll give them the benefit of the doubt.

At this point I am scheduled to meet with the study lead again, but more importantly I will get a CT and should demonstrate that the disease has progressed which should finally allow me to get on study...

AND I found a neat tool to locate parking in the cities...
http://en.parkopedia.com/

Avemar, the first 2 days

I've take supplements before in my day, and never had any problems with them.  Avemar, sold as AWGE in the states, is no different.  At least, so far.  It's only been 2 days and my biggest complaint is the AWFUL taste.  It is supposed to have a "natural" orange flavor, and the first you smell of it is something close to orange, but once you drink it...it is the flavor of rotten orange mixed with yeast and who knows what else.  It makes sense that you get such a fermented flavor, I'll just have to find something to mask it better...

Available in my lifetime?

Could the most effective treatment be available in my lifetime?  Well maybe.  At least I might be in the right place in treatment for it.  According to the following article in salon, immunotherapy has really gained some ground.  And with continued successes (40%) more clinical trials might be available.  I might be in a good place to benefit as most of the trials I might have access to are phase 1.

It looks like the trial from the article was this one
 
On another note, I'm never posting using my tablet again;  tedious.

Interesting supplement

At the stage I'm at, and for anyone on clinical trial, they prefer that you don't take any sort of supplement or herb, basically anything out of the ordinary diet while you are engaged in a trial.  I suppose it is for your safety, but my first instinct is to ensure a quality(accurate) experiment result.  As much as they can with the human being.  I have been diligent in observing the dogma and avoided supplements and herbs, etc, as I've gone along.  Now, as I'm off study and trying to find my next step, I'm free to go ahead and try some of the many supplements I have or have read about.

Believe me, most aren't even necessarily cancer fighting, just health promoting(hopefully).  There are some theories that supplements actually foster a biosystem in which cancer thrives...  I'm not convinced of that.  As far as health promoting supplements go, I have taken multivitamins and trace mineral supplements in the past and don't feel they were to my detriment.  Recently I stumbled upon Moringa, which as a plant is one of the most useful that I can perceive.  Every part of it is useable; the leaves are edible and contain a high amount of nutrients, the roots can be used to filter and sterilize water, and a variety of other things can be done with the plant.  I haven't taken any myself, but am anxious to.

But, I'm most anxious about a supplement I'd never heard of before last night.  It's sold as Avemar, but the supplement is fermented wheat germ extract.  What's interesting about this particular supplement is that it has gone through some clinical testing and been shown to benefit the cancer patient.  Specifically, "it has anticancer, antimetastatic, and immunomodulatory effects."  And those effects have been demonstrated in clinic!!!  I haven't been able to find details about it specific to my diagnosis, but I ordered it, and am anxious to start trying it and hope to benefit from it!

Trying to make plans

I saw on one of the message boards, I am on, that there is a trial out there for an anti-CD-L1 drug, the drug is referred to as MPDL3280A.  The study I found is open label, multi-center, multi-cancer type, etc etc  and there had been one other trial of the drug that showed really promising results and was well tolerated in patients.  The trial I was looking at:  NCT01375842 had two sites close by, within a flight, and I reached out to them for participation.  Only got one response, and although nice to get a response, they indicated sarcoma can't participate.  That seems like garbage to me; the trial indicates solid tumor and for crying out loud, I've got plenty of that.

I'm discouraged by that response, so looking into other options.  I checked MD Anderson, just for the heck of it and, frankly, they don't have anything I'm even remotely interested in trying.  So, I'm writing it down here of any of the things I might want to try:
1.  The SF trial - I still feel I have a good chance to get on, but I'm not going to wait for it.
2.  New Castle Disease Virus (NDV) in Glioblastoma Multiforme (GBM), Sarcoma... - I'm always interested in immune response options, and this could be interesting, but it's only just been approved and travel to it might just be out of reach.
3.  ENMD-2076 - maybe...It's a pill like Pazopanib and I did well on it...
4.  TriN 2755 - sounds like an interesting infusion, problem is it's a dose escalation trial which...I'm not afraid of, but may mean I don't get effective dose for a while.  Not to mention travel might again put it out of reach.
5.  Dendritic Cell Vaccine With or Without Gemcitabine Pre-Treatment for Adults - more immune therapy options...might be worth the travel.
6. Cabozantinib for Adults With Advanced Soft Tissue Sarcoma
7.  alisertib
8.  Her2 Chimeric Antigen Receptor Expressing T Cells in Advanced Sarcoma
9.  Anti-KIR Antibody in Combination With an Anti-PD1 - Sarcoma is accepted, but no slots open now, 50 people on list ahead of me, but I am on the list.
10.  

#.  And the search goes on.

Spoke too soon.

They called me back last afternoon and informed me that I had to wait until I have another scan, showing growth, before I can enter the trial.  I think that's garbage since some areas did show growth while others didn't on my most recent scan.  Need to make a plan of how to proceed, but I'm pretty sure that any trial I try to get on will have this same stumbling block...  Unfortunately, I have to wait a while before a new scan can be performed.

New trial to start soon

I got THE call I was hoping for today!  They have an opening for me on the trial; do I want it?  Heck yes, please, very much so.  They are sending my information to the scheduler and going to try to get me started this week or next!!!  That way we can avoid having to perform another CT and use my most recent one.

I'm anxious to get started, curious how the drugs will treat me, and hopeful that it will work.  One thing I've thought about this trial since I first heard about it, over a year ago, is that HDAC inhibitors might be the answer for me.  Also, the trial is in combination with Pazopanib, which I have had what my old doctor described as a better than most response.

Monday's meeting

Had a pretty good meeting on Monday.  They seem to be a smaller facility, so I'm kind of thinking I'll get better attention, maybe?  Dr. seemed very knowledgeable and caring.  Seemed more patient centered.  But also a bit more cavalier, which, to me is a big plus.  I don't think anyone is solving cancer by following the "rule book." 

They were surprised that I had tolerated full dose Pazopanib considering that to be the limiting factor in their trial.  I though it was weird that people were having trouble on Pazopanib...  I was glad to hear that they should have a spot for me in 1-2 weeks.  The sooner the better.  I'm anxious to start and confident that this trial will treat me very well.  Also, logistically it is already treating me well apart from the tolls in and out of SF.  But that bay bridge is pretty impressive with a huge span.

Next Appointment

I now am scheduled for an appointment with the study lead of the trial I really want to do, in San Francisco!  I'm glad to have the opportunity to try different doctors and get opportunities to try different trials.  I go on Monday and it's going to be great!

Rolling the dice

Well, if you go looking for something, you're sure to find it...  I guess I've been looking for any excuse to say that this trial isn't working for me and I can go off trial and try to get on a different one.  After meeting with Dr. he was pleased with my scans, indicating that for the most part it wasn't growing, but some mets were, while others weren't and some may have even shrunk.  He went into a long explanation about how he had looked at a the iliac artery and found it to be looking better now than it had before.  He also explained that my kidney function had returned to the best it's been in over a year.  All these reasons he indicated led him to believe that it was working for me.

I told him I didn't think it was good enough, that I'd been at odds with the trial for a while, the commute was becoming too burdensome, and I was more interested in another trial.  We talked a lot about how much he believed the current trial was benefiting me and why I shouldn't leave it.  Ultimately, I chose to exit the trial and now I'm trying to get on the one I really want to.  We'll have to see how that goes, I'm hopeful that I can get on it!

Unfortunately this is really causing me some anxiety...  But, you have to roll the dice.

This past month or so...

So sorry I haven't been on top of things here, and everywhere.  I will say that I've been feeling overwhelmed with everything this last month and then some.  Maybe too many irons in the fire, but I didn't put some of them there...

Continued dissatisfaction with my Dr., so this next visit I'm asking for a referral to a different trial.  That means, no, I don't think the trial I'm on is having more of an effect on me than to stabilize the tumors and cause me to have bloody noses.  I ask my Dr. to be more aggressive and I get wait and see.  I think that's more a problem with oncology in general.

The commute is taxing...especially considering that I don't believe I'm benefiting from the chemo.  They are having trouble getting authorizations from my insurer for services, CT scans.  At the time they reach me on this, literally the afternoon before the services, I'm packed and ready to leave, not in a good place to deal with the insurer.  See what happens when we get there I guess...

Overall, I'm doing ok, still fighting, but very frustrated and feeling overwhelmed.

I think that's the best I can summarize.

Since last time I was able to get some of my appointments rescheduled so I don't have to miss such vital days at work.  That was good.  Unfortunately on those days I'm rescheduled for I see my Dr.'s resident rather than my Dr.  I don't think much of the resident...  I'm convinced that I've been lead to this trial just for some kind of benefit to my Dr.  This trial has really born out to cause me a lot of nose bleeds, run me down requiring a lot of sleep, constant night sweats, and really impact my work with the amount of time I have to take off just to participate in the trial.

As I've said, I don't think the trial is working for me and we'll get confirmation or contradiction of that on the 23rd.  Regardless I plan to ask for a referral to a trial in SF that I am really excited about, mostly because it won't require infusion, but because it will be PO(by mouth) and one of the pills has been good to me in the past.  Also, SF will be a little closer which will help.

Feelings, as my brother asked

I feel like my doc is just using me as a test subject.  I don't think I'm benefiting from the trial.  This week was a break from treatment and I've been feeling...tired.  Every morning I have a nose bleed, and not just some red in the tissue paper, a pretty bad bleed that takes about 10 minutes to get under control.  I was using some hemeostatic strips that I bought, but today I used Afrin which seemed to help.  I've had constant mild pain which amounts to discomfort, I can manage that with tylenol.  At night, I sweat through the sheets and wake up about midnight or 1, then go down and sleep in a sleeping bag so I don't freeze in my own sweat.  I sweat less then, but still eventually wake up sweaty.  I, in general, have trouble keeping warm through out the day and even with the thermostat at 70, I'm shivering.  Appetite is way down, mostly because I think this big tumor in my belly is pushing on everything.

All this crap makes me feel like things are urgent, but the state of oncology seems to be 'we'll see'.

I can't decide if I should continue the trial or not?  I found a clinic in Wisconsin that administers Coley's Toxins and I definitely want to give that a try at some point, next I guess.

Anyway, shoot, I'm sorry this all sounds so bad, I'm just so frustrated and conflicted about what to do.  Other than that I'm feeling ok.  I mean, I make it to work and do my job if that's any measure of how I'm feeling.

St. Patricks Day

I hate to miss corned beef and cabbage, so made sure to do that.  Nothing remarkable about my condition, had a small nose bleed...

Oh, I should mention that lately I've been finding it hard to keep warm.  I attribute it to the weird spring weather here, and the treatment.  Also, I've noticed alopecia is beginning to start for me...my hair is now pluckable!!!

Rest day

Yeah, right.  I slept in a bit, but was up at a decent hour and had a nice breakfast at one of the best places in town.  It was nice, but I really would have liked to get more sleep...the rest of the day was pretty lax though.

Another nose bleed

I keep getting nose bleeds and I'm managing them ok, but they are still a nuisance.  The nurse practitioner advised that I could try Afrid to constrict the blood vessels.  I haven't tried that yet, but I bought some hemeostatic nose strips which work ok...  Dr. suggests cauterization...

Made it last night

Pretty exhausted after that last round, hope to get some rest this weekend.  We got in late, and I ended up over sleeping and made for only a half day to work.  Didn't feel as great after this last infusion as I did last time...  must be catching up to me.  At least I get a break next week.

CT results

CT results were pretty inconclusive in some cases and ridiculous in others.  Dr. interpreted results as stabilization which I question.  Consider if you will, the fact that this large "superficial" tumor in my abdomen now has a ring in it of what my Dr. believes is more compact tumor, surrounded by the less dense tumor.  Dr. believes the less dense tumor is necrotized, but has no explanation for the dense "core".  From the image I saw, you might compare it to an avocado in structure; a clearly defined center surrounded by well defined tissue.

To me that screams no response, but I opted to at least get through the trial.  After looking at the CT, went up to infusion and was able to get started on that pretty quick.  I got both drugs today so the infusion took about 4 hours from start to finish...  They gave me benedryl again and I was out.  Need to remember to ask for Claratin if I want to stay awake.

Worst nose bleed yet

Woke up with a nose bleed.  I have been frustrated because my nose is completely filled with dried blood and I don't want to blow it because that will probably cause a nose bleed.  I said to myself "heck with it," and blew my nose since I already had started to bleed.  Well, that was about bloody murder and took about 45 minutes before I was able to get it under control.  That said, I wasn't completely practicing effective nose bleed control methods.  I ended up getting a bit sick from the amount of blood I ended up swallowing.

When I got to the doctor, nose bleed started up again.  The sight of blood in a cancer center seems to be the way to get things moving because after that it seemed like when I said jump, they did.  We opted for a CT immediately to see if we could determine anything about the pain I'd been feeling.  Talked about pain management and got a script for oxycontin, a slow release pain reliever, and some meds to deal with the constipation that those kind of drugs cause.

Got in to the CT and will get results tomorrow...  Rest of the day was a waste, I don't deal well with the pain and the meds make me tired, so we just got another room for the night and relaxed with delivery.

March 7-11th

So, these day's were defined by a sharp pain on the left side of my body in the lower abdomen.  It was extremely painful so I continued to take Oxycodone.   Makes me pretty sleepy, so I chanced taking it at work, and was able to stay awake and get through the week, but I know I wasn't nearly as sharp as I am familiar with.  Definitely used the Oxy to get me to sleep, but woke up to pain after that wore off... about 4 hours.  Then took another.  It's a pretty low dose and I try to avoid using it but sometimes it's necessary, especially for sleep.

A common side effect of the ramucirumab is nose bleeds and I'm no exception.  I've pretty much had at least one a day, mostly in the mornings, but sometimes at other times in the day.  I joke that no one should even look at my nose or it might bleed.  It hasn't been completely unmanageable, it is an annoyance though.

On the evening of the 11th, we drove up to for my next appointments on Tuesday.  That trip was painful and I didn't really get out of the car unless I had to use the rest room.  I didn't take Oxy in case I had to drive...Tylenol isn't cutting it.  We made it late and went straight to bed.

Good morning....pain

Woke up feeling really great actually.  Went about my prep process and about half way began to feel pain.  I took tylenol immediately and took some to work with me.  The tylenol worked well until about lunch and subsequent dosage wasn't able to keep ahead of the pain.  I finished the day a bit slower and a bit hunched over.

Pain intensified and I took small dose of oxy this evening and it's doing ok.  I'm curious if a muscle relaxer might be a better approach for the pain management because I really feel like my whole body is tensing up with the pain.  Will ask Dr. about that.

Driving Rain, Pain, and No 9

Well the drive last night turned out to be pretty rough actually.  Pain had started to present a bit yesterday, and gave me a general feeling of discomfort.  I generally avoid pain meds, so I didn't even take Tylenol.  Well, the pain progressed and I was probably kept awake on the drive because of it.  That's good, right!?!?!  I ended up picking up some Tylenol at a gas station and was able to make it to Allan's and crash(SLEEP) there like he graciously let's me ALL the time...

I got up to a light gray day in Seattle and went for my port blood draw, then meet with Dr.  Pain was still present and in varying degrees.  4-7 on the scale I suppose.  As long as I just sit, it's a 4, start moving a lot and I'm slower and 7.  Told Dr. about it and asked it it's any indication of a response, since it primarily was presenting at what I know to be tumor sites.  In typical fashion he wouldn't/couldn't say yes or know, but we decided to move imaging up to see if I'm getting a response.  That can change, because I have other indicators I can watch for a response.

We talked about the other trials I've told him I'm interested and he indicated what he's found is that they aren't accruing more patients.  I need to check that, but thought he could get better results.  He also indicated he's still trying to track down information on the Ixtodax trial that I'm interested in.  Said he's still working on it and hasn't had much luck, the lead investigator seems to be LOA.

Proceeded to infusion and was able to get in to that quickly.  I asked if they had to give me the Benedryl, I was under the impression it was only for the research med, butis actually for the taxol.  I was able to get it changed to claratin so I wouldn't be forced to stay another night to sleep off the benedryl.  It worked well, I didn't have any adverse reactions to the taxol, and left promptly.

Drive back was almost complete RAIN until about 30 miles from home.  Pain was actually diminished so that was nice, but I did get into some traffic and ended up getting home later than anticipated.  Was pleasantly surprised to find Beethoven's No 9 being played on the radio and had a good listen to that...not a bad driving tune there.

Driving to next Round of Chemo

The only real problem I have with my relocation for work and being on a clinical trial is the fact that I have to make such a long commute for the infusions.  Normally I enjoy a good drive, but having to do it at night is getting boring, not to mention the dangers with driving late, tired, fast, and a long trip.  Add to that the fact that I leave immediately after work.  Maybe I'm missing some downtime, but it's for a good cause.  Just a frustration...  Still, if this trial is working for me, it's worth it.

Getting caught up

Yeah, right!  But I am getting some things up here.  I made it back for work Thursday and finished the week.  I started to have some strange pains Friday night and they have persisted.  It's such a hard pain to describe, almost like needles sticking you in random places, but not superficially.  Other than that my mouth has been a little sensitive and my tongue is turning white again.  I think I'm doing just fine otherwise...

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...

Mind over matter

My brother is a big proponent of mind over matter.  I have trouble envisioning a battle like he suggests, but, I'm doing my best to repeat to myself, any of the following...  I add a bit when I think of it:

Fight the sarcoma.  Kill the sarcoma.  Destroy the sarcoma.  Break the sarcoma.  Battle the sarcoma.  Beat the sarcoma.  Lyse the sarcoma.  Delete the sarcoma.  Tear apart the sarcoma.  Annihilate the sarcoma.  Shrink the sarcoma.  Vaporize the sarcoma.  Invade the sarcoma.  Starve the sarcoma.  Eviscerate the sarcoma.  Stop the sarcoma.  Choke the sarcoma.  Evict the sarcoma.  Recognize and kill the sarcoma.  Vanquish the sarcoma.

Pazopanib end point

Dang.  That pazopanib was really treating me pretty well.  Easy to take, minimal side effects, and even some repeated tumor response...  some even still are!?!?  But, others aren't and the disease has progressed, as they say. 

Locations:  Seems like all over, but honestly, sarcoma doesn't move distally, so;  2 nodules left lung, 2 nodules liver, 1 large(small orange) in my abdomen, the primary tumor, and some other stuff in the abdomen area.

Symptoms:  Typical of sarcoma, not much pain.  I get some discomfort if I eat a large meal.  The only pain I feel is really hard to explain;  like a short little shooting pain maybe if you tweaked something.  It only happens briefly and isn't wincing, but gets my attention.  Only other discomfort is bowel movements, the tumors are pressing up on the GI tract, so if I have to go, I don't really have a choice and have to get to the bathroom pronto.  Also, I still have persistent edema in my leg.

Next:  I'm prequalified for this trial:  http://clinicaltrials.gov/ct2/show/NCT01515306  My doctor thinks it will work well for me since the Ramucirumab works in similar fashion to pazopanib and I had such a good response to that early on.  Plan is to start 2/5-2/6 time frame.  Only 50 or so patients get to try, so I'm feeling lucky about that.

Thoughts:  I was asked if I'm afraid of the next chemo?  No, I'm more afraid of wasting good time on things that don't help.  My history with chemo has shown that I'm pretty tolerant of it all, and I kind of use that as a barometer of how effective it is.  Adria and Ifos, they say I sailed through and we see that wasn't effective.  Yondelis(trebectadin), that actually knocked me down pretty good for maybe a day or two, then I was just "blah" for a week;  but that didn't work on the cancer.  Pazopanib, that actually gave me a lot of pain to start with, but that was more likely from it working on the tumors.  If this Ramucirumab works for me, I'm anticipating that pain again.  Heck, I'm even hopeful for that pain again, but if I do experience that, I will literally be doubled over, not able to stand up straight and "afraid" to have a bm.