Sunday, January 19, 2014

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.

Friday, November 15, 2013

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.

Friday, October 11, 2013

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!!!

Friday, September 20, 2013

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.

Friday, September 13, 2013

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.

Monday, August 12, 2013

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

Thursday, July 25, 2013

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.