Providing one-on-one brain tumor support


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By gregsmissi59035631, Mar 7 2017 10:33PM

This webcast is put out by DelMar and Presented by Dr. James Perry and will discuss the current treatment landscape for GBM patients. In addition, DelMar's management team will provide an overview of VAL-083, the company's "first-in-class,"small molecule chemotherapeutic addressing multiple forms of cancer, including MGMT-unmethylated and refractory GBM.

Webcast is on Thursday on March 9th at 12:00pm Eastern Time.

register at the link below.

By gregsmissi59035631, Apr 24 2016 11:24PM

The adjective proactive can describe a person who gets things done. If you are proactive, you make things happen, instead of waiting for them to happen to you. Active means "doing something." The prefix pro- means "before." So if you are proactive, you are ready before something happens. The opposite is being reactive, or waiting for things to unfold before responding. To be reactive is to be ready to react or respond to something else.-- as apposed to ready to act on one's own. A person who's reactive does things only in response to others. Think about winter cold season. A proactive person washes his hands and takes vitamins; a reactive person gets sick and takes cold medicine.

Keeping the definitions of proactive and reactive in mind you should ask yourself while meeting with your doctor or after meeting with him or her which one he or she is. For example does your doctor use the word "when?" It would sound something like this: "We will do this treatment then when it comes back we will try this one." What I hear from patients and their families way to often is that the doctor tells them that the first treatment will be the standard of care and when (the word I was talking about) it comes back we will d somthing different. That indicates to me that the doctor is already residing him or herself to the fact that the cancer or tumor will return and he or she isn't doing enough to give you the best chance of it not coming back. You might be saying to yourself that you have been told that there is 100% chance of the tumor or cancer will return, but I am here to tell you that everyone is different and that is not always the case. You can't believe that. Another way to tell if your doctor is proactive or reactive is whether or not the doctor gives you choices of different treatment options. Different treatment methods offer different options for how aggressive you want to be. Do you want to start with the standard of care, sometimes called "The Gold Standard?" Or do you want to be very aggressive and hit it with everything that medicine has to offer to give you the best chance of it not coming back. The choice on how aggressive you want to be is ultimately yours. Remember it's your life!

My doctors were very proactive and gave mell all the options on how aggressive I wanted to be so that I could make an informed and educated decision. My options started with surgery. My doctors gave me three options. The first was to do nothing and enjoy a good quality of life for the time I had left. The second was to have surgery, radiation and temodar then continue with the standard of care. The third was to have surgery, which included a treatment after the tumor was resected, radiation and temodar then a cocktail approach using Carboplatin administered intra-arterially in conjuction with Cytoxin and Etoposide given through a port in my chest. Stay tuned for the choice I ultimately made.

By gregsmissi59035631, Apr 19 2016 04:23PM

As mentioned in the previous blog you are the number one person on your healthcare team. Now we talk about family, friends and the community, which play just as an important role in the support you receive.

When I was going through my treatments, which were very aggressive and required me to stay in the hospital for two nights and three days my family and friends were integral in helping in a number of ways.

First my family I don't think throughout the entire year of my treatment not including my surgery and radiation that one member of my family didn't fly in to spend two weeks at a time with me. It is very important that you have the support of your family. That support meant doing the shopping, cleaning and laundry and most of all just being there for company. My family; mom, dad, Ben, Jenny and Chris spent countless hours, days and months just listening to how I was feeling, getting me what I needed; food or medications, picking me up when I was down. They made sure that I stayed strong and positive both mentally and physically. This was a full time job. I knew that I didn't want to die. I had to be here for my son Joseph. I told myself over and over again "Joseph can't live without his dad". My brother and his wife moved their family to Minnesota to be with me. That was amazing! I know that I haven't thanked them enough for the huge sacrifice they made to be with me. Thank you Chris and Megan!

Since having just moved to a brand new city the only people I knew before I was rushed to the hospital was the hotel staff where I was staying. We are all still friends to this day. They were very supportive to my family and friends when they came to visit always making sure that they had everything they needed.Then there are my very good friends from Milwaukee, Wisconsin Jeff and Nicole. They drove up prior to surgery to be with me and my family and also a number of times after to help out as well. You really know who your true friends are when something like this happens that's for sure.

There was a lot going through my mind all the time. I have come up with a quote that I believe is what patients need to realize and understand. It goes like this.

"Staying positive can be hard at times, but you have to focus on what you believe your outcome will be. I am going to kick cancer's butt! Stay strong. get rest when you need it and call on your friends for support. To admit that you need help is not a sign of weakness. You are not a statistic! You should be treated as a patient and not as a diagnosis".

As a patient the most important thing you need to remember is that you have to ask for help and support, you are not being a bother to people. They can so "no". Unlike other types of cancer or illnesses you may like fine on the outside when you feel link crap on the inside. People can't see that so you need to speak up.

By gregsmissi59035631, Apr 19 2016 02:14PM

I had just moved to Minneapolis, Minnesota from Maui, Hawaii where I had been living from 1999 to 2004 when I received my diagnosis of a GBM. The very night I arrived I had a seizure during the night and was rushed to the hospital. Being in a new city not knowing anyone or where to go I was at the mercy of the ambulance to take me to the closest hospital. I didn't have time to be scared. I didn't know what was going on. I couldn't even answer the EMT's questions. I knew something wasn't right. With all this being said I was very lucky that I was brought to a hospital where the neurosurgeon and neuro-oncologist were proactive and treated me as a patient and not just as a diagnosis. This is where relationships with my medical team and the support from my family and friends really became important.

Relationships with your medical team should be built on trust and confidence. As a patient I needed to trust the doctors that they have my best interests in mind. I also need to be confident that they will give me the best treatment options and not just the standard of care. Most of all the best chance for longevity. Trust works both ways. The doctors should trust you to do research on your own and come in with questions and I sure had a lot of them. After all it's my life and I wanted to be sure that everything is being done that was medically possible to give me the best opportunity at long term survival.

Once your treatment option has been chosen and agreed upon be everyone on your healthcare team (I was the number one person on my healthcare team and you should be on yours as well) then your team expands to the nurses, radiologists and all the other medical professionals who will be playing a very important part of your treatment plan. You need to have trust and confidence in everyone that they will be administering, reading, scanning and giving you the best possible care that you deserve.

Having this trust and confidence in the medical professionals on my healthcare team allowed much of the unknown about what to expect before during and after my treatments went away. I knew that I would be taken care of and that my quality of care met or exceeded my needs and expectations. My true sense of humor was able to shine through.

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