Been almost two weeks since my first immunotherapy treatment. Will not find out if it is working for a bit still. With chemo they can often see results on a scan within two weeks of starting. With this treatment it can be a few months, which includes an initial scan where the cancer looks like it is growing - if it works the inflamation process associated with the system attacking the cancer can look that way.
That being said, after one treatment (I am on a once a month schedule) I do not feel bad and do not think I have had any reaction so far. I am training for triathlons still and any feeling of being tired I chalk up to that, much like seasonal allergies for whatever else I am feeling. Nothing that seems to be a radical change in those things.
This (so far) is easier than chemo. Blood draw/4 EKGs, 1/2 hour infusion, another Blood Draw/4 EKGs, hang out for 4-5 hours then one more Blood Draw/4 EKGs. The next treatment I do not even have to go back the following day for more blood draws. Certianly an improvement over being infused for a couple of hours and having a chemo pump needle stuck in my chest for another 48 hours.
@iTri4aCure
Cancer came back for the third time in 3 years the end of 2017. Inoperable. Signed up for my 1st Triathlon that day and started training. Ironman 70.3 Finisher Fall 2018. Just missed another 70.3 finish in Fall 2019, after another 22 rounds of chemo and 3 radiation treatments since the Fall 2018 finish. Chemo stopped working December 2019. Looking to race in 2021
Thursday, May 24, 2018
Sunday, May 13, 2018
Saw Something On Twitter About Pink Uniforms
Today is Mother's Day, and MLB teams are wearing pink to raise money for breast cancer charities and general awareness.
Generally, as a Yankees fan, I believe that unless it is the traditional uniform, it should not be worn. I also have a certain level of cynicism when it comes to variations in uniforms. Yes, I am looking at the New York Giants and the uniforms that come out once a year that I am sure are designed to get me to buy a different jersey.
People on Twitter today were complaining about the uniform changes. Some seemed rather general, “Don’t mess with tradition.” One person mentioned pink washing. Basically, there is some devil in the details about the promotion and marketing of pink ribbon events. This can really apply to any charity or event.
For instance, one big campaign has the following terms and conditions "..now through [end date], spend $10 or more and xxx will make a one cent donation up to [$x total campaign cap]."
In other words, if you spend $100 it is still a 1¢ donation. Spend any money after the [$x total campaign cap] is reached, but before the [end date]. No donation. So you may think that you are taking an action which results in a donation, but it does not. Or a really minimal donation at best. (As an aside, if you look at financial reports, the [$x total campaign cap] may work out to be a minuscule portion of the total advertising. It would seem a company is getting more than [$x total campaign cap] worth of publicity. )
To be clear, I am not saying that it is not a good thing that they are raising funds for, or bringing awareness to, various causes. I also understand business – if a company can leverage a charity campaign they often will. But it is something to keep in mind. Of course no charity or company will ever be perfect, and most will be subject to criticism at one time or another.
Anyway, the person bringing the pink washing up was subject to some questioning. Basically there was the general tone of the wrong place, wrong time to bring up the concept.
All that being said, I am not sure how MLB or the teams handle all of this in terms of donations. I took a quick look, but did not find anything. But in general it does not strike me as a money grab. I have been around enough people who have dealt with cancer – patients and their family members and friends. This includes athletes. On the player level, from my experience, they wear it for all the reasons that one would hope for – to show support, love and respect.
Though not my personal cancer, I know many who have had breast cancer or have breast cancer. I have a breast cancer charity on my uniform for my friend. What happened today is fine. If the point of a particular tweet is that the uniforms should not be changed ever, even for this, I will respectfully disagree even though I believe the Yankees pinstripes are sacrosanct. There are some days for which a special uniform is called for. Today was such a day.
@iTRI4aCure
Wednesday, May 9, 2018
Zombie Time: Almost Time To Start Drug Trial
So back from the last triathlon, hanging out with the mouse at Disney. Had my biopsy to see if I qualify for the drug study. I am pretty much assured that I am in, though the biopsy could bounce me.
Will find out shortly. If I am good to go, I start next week.
It is a bit weird now. I know that the standard therapy will only usually work for a year in general. Though some people last longer. The immunotherapy may work to stop things or even reverse things. But it is a wild card. Though it is generally thought to be safe and well tolerated, there is a chance the auto immune response can turn on the body itself. The usual worst case scenarios, which are somewhat rare, is diabetes or thyroid issues. Neither are plesant, but both controllable and easier than cancer. There can be more extreme reactions.
So there is the part of doubt creeping in about whether I should just go with what is out there and known. But if the drug trial does not work, there should be time for me to got back to the other regular treatments out there. Sigh.
Anyway, this is the drug that is in my trial. A bit past my pay grade in understanding, but I get the general idea. Cancer treatment will eventually be going this way, with more personalized treatments.
anti-GITR agonistic monoclonal antibody INCAGN01876
An anti-human glucocorticoid-induced tumor necrosis factor receptor (tumor necrosis factor superfamily, member 18; TNFRSF18; GITR; CD357) agonistic humanized monoclonal antibody, with potential immune checkpoint modulating activity. Anti-GITR antibody INCAGN01876 binds to and activates GITRs found on multiple types of T cells. This stimulates the immune system, induces both the activation and proliferation of tumor-antigen-specific T-effector cells (Teffs), and suppresses the function of activated T-regulatory cells (Tregs). This leads to tumor cell eradication. GITR, a member of the TNF receptor superfamily and T-cell receptor co-stimulator, is expressed on the surface of multiple immune cell types, including Tregs, Teffs, B-cells, and natural killer (NK) cells. Inappropriately activated Tregs suppress Teffs and suppress T-cell receptor (TCR) signaling. Check for active clinical trials using this agent. (NCI Thesaurus)
Keeping myself occupied after the biopsy taking selfies of my feet. |
It is a bit weird now. I know that the standard therapy will only usually work for a year in general. Though some people last longer. The immunotherapy may work to stop things or even reverse things. But it is a wild card. Though it is generally thought to be safe and well tolerated, there is a chance the auto immune response can turn on the body itself. The usual worst case scenarios, which are somewhat rare, is diabetes or thyroid issues. Neither are plesant, but both controllable and easier than cancer. There can be more extreme reactions.
When there is a puppy dog around, even if just on TV, it makes a biopsy feel more warm and fuzzy than it would otherwise. Kind of. |
Anyway, this is the drug that is in my trial. A bit past my pay grade in understanding, but I get the general idea. Cancer treatment will eventually be going this way, with more personalized treatments.
anti-GITR agonistic monoclonal antibody INCAGN01876
An anti-human glucocorticoid-induced tumor necrosis factor receptor (tumor necrosis factor superfamily, member 18; TNFRSF18; GITR; CD357) agonistic humanized monoclonal antibody, with potential immune checkpoint modulating activity. Anti-GITR antibody INCAGN01876 binds to and activates GITRs found on multiple types of T cells. This stimulates the immune system, induces both the activation and proliferation of tumor-antigen-specific T-effector cells (Teffs), and suppresses the function of activated T-regulatory cells (Tregs). This leads to tumor cell eradication. GITR, a member of the TNF receptor superfamily and T-cell receptor co-stimulator, is expressed on the surface of multiple immune cell types, including Tregs, Teffs, B-cells, and natural killer (NK) cells. Inappropriately activated Tregs suppress Teffs and suppress T-cell receptor (TCR) signaling. Check for active clinical trials using this agent. (NCI Thesaurus)
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