Another 2 month follow up and end of the most recent trial.

I was expecting some bad news.  after the last check up I began having problems with the drugs and wasn't able to continue taking them with any regularity.  I ended up missing quite a few doses, and began noticing signs of disease progression.  I had hoped they would be able to provide other drugs to help tolerate the problems and allow me to continue with the trial, but they weren't.  Also, they didn't have any other trials that I could try and gave me the handshake that they always give you when they can't help you anymore and I believe is kind of a kiss of death... 

I returned home, anxious to try to get on a new trial, but also knowing that I need to do something ASAP.  I spoke to my local oncologist and we've decided to go ahead with Gemcitabine/Docetaxel.  It's something to try, but I haven't read anything too promising about it for my particular condition.  In the mean time, I'm looking at some interesting trials and trying to get on them...wish me luck.

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!