Loading...

cscottandcarly's Message Board Messages

Loading...
Showing 1 - 10 of 99

Page 1 of 10

And that is great info if the doctor knew that. But he doesn't. He straight up said that it's about lawsuits and fear of doing anything off protocol. Anything. With the horrible chance offered by the chemo, I'm confused by the reticence to try other things.

Scott's retired doctor, Dr. Fisher was so willing to. Support our putting our hope into other things when we saw such positive results especially when the known pathetic-protocols prognosis. Dr Fisher acted like we still had the right to full oncological care even if we risked our life with non-US protocol. He knew Scott was existing on borrowed time but he didn't want that to be true. 

This new guy didn't even want to do a blood test on Scott since he's seeing Dr Blanning for mistletoe. It's like he doesn't want to be a part of Scott's team anymore. It's weird.

You are all so amazing. I know each one here is in their own fight, so it means so much to get such encouragement. 

I know we will win this fight. I cannot believe that our new oncologist is so against anything other than chemo. He literally said we shouldn't take turmeric if we go on chemo! What the heck! Turmeric? Really? That could hurt Scott? Really?  

At least he admitted that Folfiri could cause cancer. That's good to know. I don't Turmeric is cancer-causing, but that is ill-advised? I don't get it.

Well, I am NOT amazing. I have had this easy, honestly. Way easy. Things are about to get tough...tough in the same way it has been for everyone else. Doctor tough.

As you may remember,  in June, Scott's amazing oncologist retired. We had the second visit with his new oncologist yesterday, and it didn't feel very feel good. While the doc recommended trying mistletoe again, he did not have any faith that It will work again.

He also seemed to not have really read Scott's history. He said things that were totally in opposition to the facts and explained things using these inaccurate narratives. It was weird.

I understand that Scott has over 3 and 1/2 years of Stage IV Colon Cancer records, dozens of office visits, at least a dozen scans, dozens of blood tests and hospital visits. That's a lot to read, especially for a doctor with so many patients.

But in my estimation, Scott is worth the read and it would make the doctor's advice more valuable. Instead of being interested and invested in our journey, he seemed to want off the ship. 

It felt nearly adversarial at one point, particularly when he said wouldn't allow Scott to use mistletoe and Folfiri. He said it could harm Scott and he wouldn't approve them to be co-prescribed. He at first refused to do blood work on Scott, saying he should have it done by the mistletoe doctor! Even tho Rocky Mountain cancer Center's has been providing care to Scott since May 2015 and we have done everything they have ever recommended, from 2 chemos to 18 rounds of radiation. We wish they had worked, honestly. He implied Scott should have tried longer with folfox even though the first onc stopped it cause of toxicity and Folfiri is similar. Just like it's similar to xeloda which Scott took for months during which his cancer spread throughout his entire abdominal cavity and around his heart. The Folfiri will not cure him and it will give him a 10 to 30% chance to live up to one year longer

Anyway, it's so crazy. I'll give more info very very soon. Night night!

Yeah, we're definitely not pleased with the reading of the scan, and I'm sure we will be even more displeased after seeing the oncologist this morning. 

We only want the truth so whatever is said, we are okay about it, but it sucks to get bad news. 

We are back on the mistletoe so we know things will improve, even if we have to change kinds of mistletoe. 

I plan to detail all of the news from both appts later today.

I don't think I've seen a message from you Farah, but I'll look.

I'll be sure to update soon.

Update time...
Bad news... My hopes of the scan being somewhat positive were dashed. We visited one of Scott's doctors and he explained that the kind of necrosis Scott shows does not indicate that the treatment is working. We trust his opinion (although we hope he's wrong), and we trust his advice (even though the advice was not what we wanted to hear).

That's all I can say now. We are hurting really bad right now, scared of the journey ahead, afraid of the man made impediments to this God and earth made healing.

But we have total hope. It will take time, but we are ready for whatever comes and know we will be victorious!

Also, just a quick message to those who have reached out privately. My account does not show any private messages sent to me after July of 2018. I don't know why that is the case, but I thought I should let you know why I may not have answered any message that you sent.

I have reached out to the cancer compass folks about challenges posting and recieving messages, and I am still awaiting a response.

This being said, I'm happy to assist in whatever way I can. Please remember, I am not in anyway a medical professional. I am literally just the wife of a guy who was diagnosed with cancer in May of 2015. That's it. I only know what I have experienced, and this is always communicated through my own lens. So please do tons of research and use all information you learn to lead you to search for more information. 

Also, please let me know if you have tried to reach me unsuccessfully. I haven't gotten a private message since July, according to my list of notifications, so that seems unlikely, and I am quite sure I have answered messages from people.

All my best, everyone! I will keep yall posted!

Love to the Buckley Family from the Scott and Carly and Family.

Realm of caring is a great organization.

They have been ahead of the game in research and support for patients opting for cannabis. They were among the first websites I found that provided good, solid info about cannabis, and info of how to get it and how much you should take. Reliable and helpful, real information. And within a year or so of Scott's cancer diagnosis, the Realm of Caring site began to provide cannabis and cancer information. The information they provide online has been super helpful to us, personally, as we navigated our entire cannabis journey, from our dose of Charlotte's Web CBD for Scott's intractable  epilepsy and as a resourse for cannabis and cancer information.

Most importantly, they fund research and have worked to make sure CBD could get into the hands of everyone and not just those lucky enough to live in states like Colorado.

And, again, I am so sorry this has happened and I wish I could have helped more.

Realm of Caring Mission Statement

"Realm of Caring Foundation empowers you to take control of your health and enhance your quality of life by providing cannabinoid research initiatives in addition to educational programs and services."

I am so so so sorry that he passed. Scott and I are sending our love and understanding to you and your family.

I just read a study that shows mistletoe extract can be effective in the treatment of pancreatic cancer. 

We experienced it saving my husband's life over two years ago but he has Stage IV Colon Cancer, not pancreatic cancer. We used cannabis oil as well. 

We did try chemo, but it was horrible for my husband who is young, but has other health issues (like epilepsy), so he couldn't tolerate it. This made the choice to try cannabis and mistletoe an easy one.

They have worked for Scott so far, but we are hitting bumps from taking a treatment break. So we are back on the treatment and already seeing positive results. 

We shall see!

RE: Cannabis oil

by cscottandcarly - September 27, 2018

My husband has successfully used both cannabis oil (THC and CBD) and Helixor (Mistletoe Extract) to fight Stage IV Colon Cancer for over 3 1/2 years.

Believebig.org was very helpful in finding a doctor to prescribe mistletoe, and I do believe it can be effective in the treatment of breast cancer.

Showing 1 - 10 of 99

Page 1 of 10

Loading...

About cscottandcarly

Patient
Colon Cancer
Acupuncture, After Treatment, Alternative Treatments, Biotherapy, Cancer Diagnosis, Cancer Nutrition, Cancer Prevention, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diagnostic Imaging, Genetics, Side Effects

We care about your feedback. Let us know how we can improve your CancerCompass experience.