Trip to CA & Big News

My parents and brother just left on a trip to CA to visit City of Hope, UCLA, and USC to see if my dad is eligible for any of their Glioblastoma trials. We had been pretty discouraged because at our Mayo appointment last Friday they told us it's very unlikely we will find a trial until he has recurrent Glioblastoma, which means we have to do something to get rid of it already and it came back (or began growing again). Since we were told by multiple places my dad's wasn't operable and the Standard Care wasn't going to be good, due to the full brain and spinal spread and the way they'd have to radiate his whole brain and spine, we lost a lost of hope over the weekend. Mayo also made it clear to act quickly with our decisions because my dad has little time left. We got very excited to possibly get the CancerNeo vaccine and then found out it could take 12 weeks to get back and that is too long for my Dad to wait. Again, we were in full panic mode. Last night my Dad's pain level was at an 8 and we were all unsure if he should even go to California, especially when it was unlikely they had any trials for him, traveling is so hard right now, and hearing more places tell him they can't help him would be too hard for all of us. City of Hope even called us yesterday and told us the trial that wasn't for recurrent already closed and we were all spiraling out of control about what to do.

7 pm last night my brother got a call from the Ivy Brain Tumor Center at Barrow. We have been trying to get a second opinion from them for weeks, you guys. WEEKS. They reviewed my dad's scans and medical records and DO think they can operate on the tumor. This changed literally EVERYTHING and it is the night before they left on this trip they found out. Now when we go to these places in CA we can find out about the trials for recurrent and do these after he does the surgery. They said they think they can get him in by October 1st and take out maybe 80% of the tumor which will buy him some time to figure out how to tackle the left over cancer in the brain and the spine.

My dad was in a lot of pain when the call came in and kept his eyes closed the whole time laying down, but still kept saying how happy he was that someone finally thinks they can help him. Every doctor we have seen for this so far has told us they cannot help him and he won't survive this. Hearing someone say yeah they do think they can do something to help the process start is major for my dad's dwindling hope.

The Mayo appointment was on Friday and he was there from 9am-5pm and all they heard was bad news from everyone we met with. We are very grateful that we kept pushing and got a second opinion from Barrow and we hope that we just found the first thing we are going to do to try to stop the spread of this tumor!

Please send positive energy that the trip goes okay and isn't too confusing, hard, painful, or hope dwindling for my dad.

Much love to all!

Donations go to his wife, Frances Young:

Zelle/Apple Pay :: 520-808-0081

Venmo :: Fran-Young-12

Paypal :: fatfreestuff@yahoo.com

Symptoms So far

Our dad's brain tumor has produced a variety of symptoms so far, with new ones arising. The thing about brain tumors is that the symptoms differ based on where the cancer is located and what part of the brain it is affecting. Our dads is located behind his left eye in the center of the left side of his brain, with tendrils coming off going across the midline and corpus callosum, to the other side of his brain. This is why they deemed it inoperable.

Our dad's first symptoms were signs of confusion trying to follow the plot-lines of shows my parents have always watched and loved together. He had trouble focusing on the tv and his eyes would feel tired. He started having pain and vision changes in his left eye. They went to an eye doctor thinking maybe he was having an eye problem and my mom thought maybe he wasn't following the shows because he couldn't see well. Weeks went by and my dad became more confused and a pain began to radiate from his left eye up his skull and down his neck to his shoulder. This same eye is where he was going blind. He said he thought these things were just part of growing old so he was just trying to deal with it. He decided to go to the ER to get checked out because he started to feel like he didn't know where he was or what he was doing and was very dizzy. We are so glad he did and you should too if these symptoms happen to you.

Since finding out about this (almost a month ago now) the changes we have seen in him have been increased confusion, increased short term memory loss, increased vision loss, increased pain, and anxiety.

He also feels like he needs to keep his eyes closed. He will have them closed a lot of the time and we will remind him to open them and when he opens them he says, “whoa! I keep forgetting I can open my eyes and then I do and there’s a whole world out here!” And then he will often begin closing them again shortly after that. We had the eye doctor do extensive imagining on his eyes after we found out about the tumor and were told it’s not an issue with his eyes. They confirmed his new vision loss is caused by the tumor in his brain, so changing his glasses prescription won’t help.

A newer symptom that just arose last week is he feels like he doesn't know how to swallow. The part of his brain that tells him how to swallow is being affected. When he does swallow it is very hard for him and takes a lot of concentration and time. While he eats he says, "I can't believe i'm swallowing! I know I am, but I can't even feel it", etc.

I will say our dad still has his good moments and is constantly making us laugh with that sense of humor of his, even through this terrifying thing he’s experiencing. He has absolutely inspired everyone around him including the nurses, surgeons, and doctors who have been helping us. This cancer has had very up and down symptoms where one moment he can seem okay and the next he isn’t, but then he goes back up again at some point. We aren’t sure if this is due to his brain swelling and healing from the craniotomy biopsy or the tumor itself causing this up and down throughout the day.

 We are working constantly on helping with these symptoms and helping him feel safe, comfortable, and loved every moment of the day/night.

Suggestions always welcome to help with these symptoms! Leave comments!

Donations go to his wife, Frances Young:

Zelle/Apple Pay :: 520-808-0081

Venmo :: Fran-Young-12

Paypal :: fatfreestuff@yahoo.com

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Treatment Options So Far

Wanted to do a post about the treatment options that we have found so far that may be beneficial and help explain why we would need donations in order to do them. I also want to do this in hope that it maybe will help someone else who is looking for treatment options for Glioblastoma, since the standard care offered is not a cure.

The Standard Treatment

The Standard Treatment for glioblastoma is chemo plus radiation. They also told us this is not a cure and would only extend life maybe by a few months since he's not methylated. Normally for glioblastoma they do a brain map and radiate only where the tumor is to help preserve the good tissue. Now that they say it is leptomeningeal they would need to radiate his entire brain and spine, which has irreversible effects. Both chemo and full brain/spine radiation will give bad side effects making him miserable and causing possible irreversible cognitive problems.

At this point we have pretty much decided against the standard treatment since all it would do is more harm than good for our dad and we need to do another option and fast.

CAR-T Immunotherapy

CAR-T Immunotherapy is the most promising option we have researched, but it is only being done through clinical trials (that we know of). CAR T cell therapy engineers the T cells with CARs to promote immune targeting of cancer cells. Since my dad doesn't fit inside of the trial criteria, since he now has the rare Lepto complication, the doctors say it is unlikely any of the trials will take him. If anyone knows how to receive this therapy outside of a clinical trial or any trials that include lepto patients we would be eternally grateful. We do have an appointment at City of Hope next week in California who may have a CAR-T trials that involves lepto, but we won't know until we get there and they do some further testing on my dad. We have been waiting for an appointment with them for weeks now.

CancerNeo Vaccine

"CeGaT’s CancerNeo enables the analysis of a patient’s tumor exome to detect tumor-specific (somatic) mutations, identifies the HLA-types, and predicts neoantigens. The expression of these neoantigens is confirmed by whole RNA sequencing (transcriptome) from the same tumor sample. Thus, CancerNeo® provides the insights required for the design of personalized cancer vaccines – a powerful tool to boost the immune system’s response to cancer cells."

This is seems very promising, but it is 80k to do it. We send the actual cancer tissue of my dad's tumor to them in Germany and they would create a vaccine specific for him and then a doctor here would administer it. We cannot afford this option without major donations.

Off Label Drugs

Mebendazole, an anti-parasitic drug, has been explored for its potential use in treating brain cancer, particularly glioblastoma, due to its ability to penetrate the blood-brain barrier and inhibit the malignant progression of glioma cells.

Abemaciclib, a selective CDK4/6 inhibitor, has shown potential in treating various types of brain cancers, including high-grade gliomas and diffuse midline gliomas.

Ogremorphin (OGM) is a drug-like compound that has shown promising results in laboratory experiments for treating glioblastoma, the most common and currently incurable form of brain cancer.

Salicinium IV

This is another promising immunotherapy option we found for my dad, but it isn't covered by insurance and isn't in a trial, so it costs thousands and thousands of dollars to get for my dad. Here is a link that talks about it. This is one of the reasons we wanted to ask for some donations so we could possibly afford this promising, and more natural, treatment.

What we are currently doing to stop the growth of the cancer.

Orasal Liquid

This a way to get some of the benefits from the Salicinium IV, but more affordable, in the meantime. Orasal contains the Salicinium molecule. The Salicinium molecule interrupts the fermentation process thus enabling your own immune system to destroy those diseased cells. Orasal and the Salicinium molecule it contains are immune system modulators.

It is a cheaper option, but will still cost us hundreds of dollars a month, but not thousands like the IV. It has the same effects, but works much slower than the IV and time is limited for our dad. We bought this and started him on it on Friday.

Probiotics

I have been doing extensive research since a discovery I had yesterday about the link between bacteria and glioblastoma. I was researching what good bacteria to introduce that will help fight off the bad bacteria that are running the show in my dad's cancer. I have found some pretty promising studies about the affect of Lactobacillus Acidophilus and Kefir on gliomas (and also lots of other types of cancer).

React Supplement

React causes an immune reaction by stimulating your immune system. React will replace you own immune globulins. The enzymes and good bacteria are beneficial for you digestion and immune function.

Alkaline Environment

Another method we have started is trying to get my dad's body to be a more alkaline environment, which cancer cells cannot thrive in. This involves buying some phenomenal water and mixing with distilled water. This, plus a supplement called alk-align we had him start taking.

As you can see, most of the treatment options we are left with will cost a lot of money and my dad can't work now, since this happened. Me and most of my siblings have been not working since diagnosis so that we can help with my dad. He needs constant care and we also want to spend as much time with him as we can before this thing progresses and his brain begins functioning even less, than it already is beginning to now. I have been traveling the 5 hours round trip multiple times a week to see him, and help my family, which takes time and resources to accomplish.

Every donation, even small, is very helpful to us and gives us more hope that we will have the funds necessary to try to stop the growth of this aggressive, fast growing cancer ASAP.

Donations go to his wife, Frances Young:

Zelle/Apple Pay :: 520-808-0081

Venmo :: Fran-Young-12

Paypal :: fatfreestuff@yahoo.com