Let me just get this out of the way right now… originally before we knew we would have even had the opportunity to take the clinical trail, I saw the YouTube video of the CNN news post about the Dostarliamab trial that Memorial Sloan Kettering has to offer, and it looked like it was gonna be the best option for what was being advertised. Later we found out that you have to have a DMMR Mismatch protein in order to have the drug administered which is only within 5% of cancer patients. With a lot of praying, somehow my wife made it into the trial as an exact match. I’m not going to lie to any of you but, its still scary to say the least not knowing what to expect in the next 9 doses she has to take. Once every 3 weeks to be exact. She was administered the 1st of 10 doses yesterday.
After getting her first dose, we were sent home. Keeping a positive attitude no less. She didn’t seem all that nervous but, secretly I was. If any of you get the chance to know about me, I HATE side effects on anything especially when there is a load of them for this drug that almost makes chemo sound like an evil cousin. its immunotherapy to be exact. They more or less inject you with a programmed, armed forces team of immune cells who were trained to see the enemy, and murder the enemy at the first signs of sight of it. Well I guess within the first few hours of being stationed in my wife, they must have decided to have a few drinks, play some music, and party it up, while the others who did not want to attend the welcoming party decided to take a look around. The wife was fine after the administered first dose, and was fine all the way home. It wasn’t 2 hours after getting home, and all of a sudden the war began so to say. 1 month ago she had symptoms from the mass in the rectum based on the left side if I am not mistaken which levels Upper GI bleeding, stomach cramps, sour stomach, and the urge to go at least 15 times a day weather awake or asleep. Somehow these symptoms seemed to have mostly went away before the trial except for not defecating normally which rarely changed. This might have been due to the fact that I placed the wife on a Keto diet to get rid of her high sugar intake. Its said that any form of cancer loves sugar. So why not starve the cancer at this point. I also had her drinking 1/3rd of a bottle of Kombucha a day, 1 complete multivitamin a day, had her take Ivermectin twice a day administered in a vegan cap, drinking at least 5 bottles of water a day, an uptake of fresh vegetables (which she hates most of), and a super greens drink 3 times a week. Maybe all of that might have contributed to the symptoms being put to rest.
So going back to the 2 hours after getting home, she started to feel those stomach cramps slowly creep up on her. She was used to this from before so, it wasn’t much of a bother until later into the night. As if every symptom, and more came back all at once like a long lost idiot brother! She now feels the need to try to go every hour on the hour while trying to sleep it all off. She goes to the bathroom but, nothing is coming out. The cramps are now getting worse. This goes on ALL NIGHT! Needless to say, she never got ANY sleep. We called the clinical trial team, and the wife decided to take the prescription antacid they administered her months ago, and the cramps started to subside. As a second idea, took a hot shower thinking it would help the cramps take a hike. She ended up telling the team she was OK after all of that, and proceeded to go to work as normal. Because she had not slept, she had asked me to drive her to work 37 miles away.
Now I was not in any real agreement with this but, my wife sees her job as her own business. She will stop at nothing to make sure she is there because she has a gift so to say. every time she is sent to one of the many stores she has been asked to take care of, she basically turns shit into gold. Seen her do it over 20 years! She feels why stay home in misery when she can be at work keeping her mind off of things, and doing what she enjoys doing while being paid! I give her kudos honestly but, i still think it was a dumb move without knowing what this clinical drug was going to do to her. Mind you I had not really slept more than 30 minutes last night. I am pretty much used to it though being the line of work I am in. I drive all the way back, go to pickup my in-law’s prescriptions, and the phone rings. it’s the wife. she must have been calling me to tell her how her day was going so far even though its only been 2 hours. She proceeds to tell me over the phone that whenever I am ready, I can go pick her up from work. SHE JUST GOT THERE 2 HOURS AGO! I sat in 1 1/2 hours traffic all the way back for crying out loud. Apparently the cramps came back with a vengeance, and no matter what she tried to do prior to going to work every really did anything. Now I race all the way back down to her to try to beat all the traffic to go get her.
We call the clinical trial team again to go over what has been going on. The call back and cannot give her anything because they think she is just constipated. The wife told them she had been going though which alleviates the issue but, it comes back worse each time. The team is under the impression that the armed forces of the immunotherapy soldiers might have started their war sooner than expected. Due to this start of the war, the mass might be inflamed which makes her feel like she has to go when in reality, it may be false. So this could be another thing going on. They also give her some over the counter ideas of Mylanta which takes up to 3 days to work, Colate which is $17 a bottle for 20 pills which is the same thing as Mylanta apparently, and some other stool rectifier. The team suggested she take them both together once a day as it may get rid of the issue. Well…. it didn’t, at least not yet. Then she starts sweating up a storm, she takes her temperature. She finds out she has a fever of 100.1. Back to calling the doctors. They have her take Tylenol which helped to bring the fever down. Out off all of that, the “Tylenol” is what placed the cramps at bay so she could go to sleep finally after 31 hours of being awake.
All of this was only last night until tonight! there is still 20 more days to see what else the army of cells cook up in their mission to kill what cannot be seen by normal cells until the next administering of the next 500MG dose. So far this has been minor even though it does not sound like it. I’m still biting my nails over here nonetheless, as well as her mother. The wife should have stayed home to see how far the rabbit hole was going to go but, that is my stubborn wife! My next question will be… What is next? Is this the major of what might happen, or are we expecting more things to come? My wife wants to stick to the trial no matter what, and sees these symptoms as small pitfalls along the way. Sometimes one has to eat a little crap to get the things they want out of life. I guess this is a good notion to think about for anything, including a drug that can possibly cure you. So if I could lend any advice to anybody going through this type of clinical trial if you made it within the 5%, Make sure after your first dose of this clear liquid, make sure to clear your schedule the next day to see what kind of fun this will give to you so you can plan accordingly BEFORE attempting to go to work the immediate next day!
Please keep us in your prayers guys & gals! this roller coaster has just started, and it is hard to see ahead in advance as the sight distance shows us nothing about what is ahead till the cart gets there! Will update you all when anything new comes up.
Anthony
Rambling At Random
