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 20, 2013
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.
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
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.
Tuesday, July 23, 2013
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.
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.
Saturday, July 20, 2013
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.
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.
Friday, July 12, 2013
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.
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.
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