Labs, Weight, appointment with the Oncologist, follow-up on the reaction or side-effects, if any, to the drug Afinitor (Everolimus). Dietician, Advanced Cancer Psychologist.
Welcome back. My last appointment was actually last Wednesday, May 14, 2021. I have gotten bad about pushing my updates back a few days from the actual appointment date. I don’t know about any of you, but it seems like the more free time I have, the less I get done, or at least get done on time. If my schedule is jam packed, I don’t have any time to mess around, and I just seem to go on auto-pilot and I get into a get-stuff-done mind-set. So no more putting off my updates! I will be doing them on the day I have them!
To recap what has been happening with my treatment plan, I am not currently on a clinical trial. If you missed the last update, I was bumped from the clinical trial because my tumor was night the correct grade. The clinical trial, which made the most sense in terms of having a positive outcome, was looking for patients with a high grade tumor and my tumor (s) are low grade. What the hell does that mean, you ask? I had the exact same question, so buckle up.
I want to start with cancer staging. This seems to be what most people are used to hearing about and are familiar with. Tumor grade and cancer stage are not the same thing. When physicians refer to the stage of a particular type of cancer, they are referring to the size and reach of the primary (original) tumor and whether or not the cancer has spread throughout the body. The cancer stage is based on factors such as the size and location of the primary tumor, where the cancer is in relation to lymph nodes, and the number of tumors present. If you are anything like me, you are asking, “What is a lymph node actually, and why is it always in the cancer discussion?”. So, from what I understand, lymph nodes are small glands that act as filters for, you guessed it, the lymphatic system! This is a clear fluid that travels through the lymphatic system carrying white blood cells (among other substances) to fight off infections, and cancer cells. When cancer cells break off from tumors, they attach to blood vessel walls or lymphatic system walls and will usually accumulate in a lymph node closest to the primary tumor. The lymph node will usually begin to swell as it tries to fight the cancerous cells indicating to a patient or physician that there is a problem. When the cancer cells spread throughout the body and to organs, it is called metastasis. Please don’t freak out! Swollen lymph nodes are often caused by something other than cancer cells accumulating, like the flu. If you are interested, there is a great section on cancer staging at www.cancer.gov.
So on to tumor grades and why I was turned down for a clinical trial. The trial was looking for high grade tumors, which basically means the tumors do not look “normal” and are more aggressive and more likely to grow and spread faster. My tumors are low grade and are more likely to grow and spread slower. This has advantages and disadvantages. I am fortunate that my tumors are low grade in the sense that they are slower growing and give me more time to make informed decisions, but that also means that they do not respond very well to standard forms of chemotherapy and radiation. The problem for me is that after I have exhausted all of these forms of treatment, the cancerous tumors will still keep growing, and eventually spread to other organs in my body and eventually be fatal. I don’t mean to sound “gloom and doom”, but this is just the way things happen. This is what I mean by saying I go with a treatment until it stops working and then look for another treatment, either standard or clinical trial. This strategy buys me more time, treatment type by treatment type, until the research catches up with the disease and we find a cure. If you would like to find more information on tumor grading, please take a look at the National Cancer Institute website at: https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis/tumor-grade-fact-sheet#:~:text=In%20general%2C%20tumors%20are%20graded,to%20grow%20and%20spread%20slowly. These are the websites that I use for in depth information to reassure Sonja and myself that we are making the right, or most well informed decisions concerning my health and longevity of life. My doctor is my number one source of information, then the websites, then other patients that have been down the same path that I haver
I will say it again, I can’t stress enough how important it is to stay informed on your own sources of information concerning your health. No one, and I mean no one, cares about you and your health like you do, so please, stay informed and question everything. Doctors are people too, and people make mistakes. No doctor worth their salt will get upset about you asking questions. If they do, find another doctor. I have to say this because I have run into a case or two where people have told me that their physician got upset when they asked about their cancer situation. When I asked about the whole confrontation and they told me they were going to “dot the fucker’s eye” (excuse my language, but for real, this is what they said) , you have to understand why the doc said move on.
I hope this update has helped, and if you have questions relating to the update, please ask in the comments section or contact me at the following: email: kglover@jukemo,com or cell: (317) 691-2760
On a final note for this update, I plan to add a few more pages to the blog including the following:
A “Stuff I Like” page with a different product or anything really that I just enjoy.
My “Frame Building” page where a timeline of my bicycle build is going with pics and videos.
A cancer resource page. I wish I would have had this active tonight, but it is already 2:35 am!
My training (cycling) page. I know, I know, I am getting to it! Updates starting Monday 05.24.21
And most importantly, your requests (within reason)! Let me know if you enjoy the blog and what changes you would like to see. I am pretty thick skinned these days, so lay it on me! Let me know if I am doing ok or awful. I can’t guarantee that I will make all of the changes, but I will promise that I will look at each request seriously and try to accommodate each one.
Ok. That is it for now. I have to go to bed. I appreciate the time you take to read this humble little blog and I will be back soon. So, until next time, Just Keep Moving!
KG