r/BeatCancer

Hi. My husband was recently diagnosed with T3 - T4 Laryngeal Squamous Cell Carcinoma and had to have an emergency tracheostomy surgical procedure performed because the tumor on his voice box was blocking his airway. All doctors involved with his treatment have strongly suggested that he have surgery to remove the tumor. The surgery can not be done at Baystate Medical Center in Springfield MA so we are going to Dana Farber Cancer Institute in Boston MA. Is there anyone who has/had similar Cancer and/or any experience with Dana Farber Cancer Institute Boston MA?

Pancreatic cancer is the most deadly insidious cancer and we have actual survivors who have been kicked out of this sub for spreading what these moderators call "disinformation" and "miracle cures" only because it veers away from or adds onto standard of care protocols from oncology wards. Integrative oncologists who have had great success with pancan patients (some of whom I know personally) who incorporated adjuvant protocols that included keto diets, high does vit c, d, fasting, repurposed drugs, supplements are doing so well because of this. This is a personal choice that all patients have to make after doing their own detailed research and consulting with their medical team. Everyone is different. You can't call a protocol "disinformation" when there are hundreds of published peer reviewed scientific papers from the greatest research oncology institutions in the world including Johns Hopkins, MD Anderson, USC about the effectiveness of these repurposed drugs and therapies in their years long in vivo and in vitro experiments. Johns Hopkins has patented their own version of Mebendazole and are rolling it out in clinical trials with all their advanced cancers including pancan for crying out loud! Just because your oncologist doesn't prescribe it doesn't mean it doesn't work. A lack of large clinical trials doesn't mean it doesn't work. Again, it's a personal choice. Choose the protocol that makes sense for you and learn the science behind it. But no oncologist has ever claimed that this published research conducted by the leading cancer biologists in the world is false, so why are moderators on this thread acting like it is? Who is any moderator to decide an integrative medicine doctor is not worth listening to? Or the top cancer cell biologists, oncology researchers at Johns Hopkins, Boston College and University of Iowa are not worth listening to?

It's dangerous and wrong to be kicking out survivors whose protocols incorporated other things besides toxic chemo drugs. We should be hearing from ALL PAN CAN SURVIVORS who want to share their stories especially since there aren't that many of them, let's be real. And some of those survivors do include people who received only standard of care, absolutely. If one of the "rules" of being part of this subreddit is "NO DISCRIMINATION" then why are survivors and caregivers who incorporated these adjuvant protocols to much success being kicked out and banned? That sounds pretty discriminatory to me.

These moderators claim to only publish "evidence based" standard of care treatment plans, but there is no "evidence based" standard of care treatment plan from any oncology hospital in America that has effectively cured pancreatic cancer for all those dying from it! What clinical trial has cured a large demographic of pan can sufferers in the last 50 years? Maybe it's time to be open to new or differing scientifically backed information, isn't this what reddit is for? Especially with a cancer like this, the more information, the better.

This is life and death after all.

Hello! I am just now deciding to join communities and talk to people and share my story, so here we go! this'll be a long one!

It all started with migraines, bad ones, like screaming into my pillows and blankets in pain bad, for months. After a month or two of 10/10 pain migraines, saying things like "I feel like my head is going to explode", I finally got a CT scan followed by an MRI at the ER. The CT revealed what the doctor called a "mass" in my brain, the MRI revealed more details. It was a 4.5 cm tumor in the 4th ventricle of my brain that was blocking the drainage path of my CSF, causing severe hydrocephalus. So I needed "emergency surgery", I was transferred from the ER in an ambulance to the ICU, a trip of ~30 minutes. At the hospital they immediately got to work with the procedure to release the pressure so I could finally get relief. I was fully awake for this procedure, they numbed my scalp where they would be drilling, then they drilled into my head to insert a tube that would drain the built up and also new CSF. Fun fact, we have absolutely no feeling in our squishy brain bits. Definitely a strange experience to recall. I then stayed with that drain in my head for 9 days because both of the only brain surgeons were away on vacation. It felt like forever but eventually they finally got to do my surgery which lasted 12 hours, the whole day my family waited to hear about me. They were able to remove all of the tumor successfully, I was scheduled for a lumbar puncture and an MRI to see if there was any more cancer in my head or spine. They found no more tumors or cancerous cells so they planned their next steps.

p.s. The brain surgery gave me double vision, ataxia and weakness in my left limbs. I now wear an eyepatch that I switch between left and right everyday. I also cannot walk due to the ataxia and weakness, I use a wheelchair out of the house but my walker at home. I just recently received AFO's to help me gain strength in my legs and practice walking again.

I was transferred to an inpatient rehab facility after about ~3 weeks in the hospital, I stayed for 2 weeks doing PT and OT almost every morning and afternoon. In there is where I had the official meeting with my primary oncologist explaining what my tumors biopsy uncovered and the next steps. He diagnosed me with medulloblastoma a common cancer among children, but rare in my case as an young adult at 19 years old. He explained when I was done throwing up and almost fainting, that the treatment consisted of 30 cycles of proton radiation followed by 9 ~48 day cycles of chemotherapy. I don't remember exactly when but eventually they were able to finally determine what subtype of medulloblastoma I had, it was group 4 which is not so bad compared to the others it seems like, still cancer obviously but still lol. So now they knew what treatment I really needed.

I don't exactly remember when I started my treatment, but I'm pretty sure that it was pretty soon after I got home from the rehab facility. The doctors wanted me to start treatment like asap, so I started doing proton radiation on my spine and the back of my head Mon-Fri for 6 weeks. Once I had finally finished radiation I was freshly 20 and going right into chemotherapy. Chemotherapy lasted 6 28 day cycles. I only needed 1 2 week break because the chemo was making me so sick that we had to take a small break. I was very relieved to only need 6 months and not 9, shorter cycles too! Chemo kicked my ass, I lost ~30 pounds, mostly muscle mass, then to attempt to gain more weight I had a G-tube put in my nose. I threw that up the night of or night after I got home from that chemo cycle and G-tube insertion. Then we tried TPN through my port, which worked much much better than the G-tube. I stayed on TPN until about a month off chemo. I have neuropathy numbness in my toes and bottom of my feet, I had it in the tips of my fingers too but that's gone away now. It should get better, could not. Only time will tell.

I am in PT every Friday with various daily home exercises to do everyday, I am finally in mental health therapy and doing much better, hence why I wanted to write this lol. If you have any questions or any similar experiences PLEASE comment, I have so so many stories from this last year. in 3 days it'll be the 1 year anniversary of brain surgery!

This is my first post here. I’ll give you a quick backstory.

Somewhere around a month ago, my wife, who is a veterinarian was dealing with a rough large dog that jerked her back and she’s had back pain since.

If we started out, trying to treat her back pain, but it didn’t really seem to be getting much better. She started developing shortness of breath, so last Saturday we took her to the emergency room.

They discovered pulmonary embolism and her lungs caused by clots in her legs.

She is an active person, has never smoked, never done drugs, barely ever drank.

She spent a week in the hospital and came home this Saturday on oxygen while we awaited the cancer center to take her in and begin her treatment.

For the first half of yesterday, she was understandably weak, but entirely cogent and communicating.

At some point, she took a turn where she was unable to speak. Still functional as in, she could point, nod, do things for herself like take drinks of water, use the toilet and wash your hands, she knew where she was and who we were , but she could not make words come out except for a few like “I love you” her own name, and when we took her to the ER, she was able to tell them where she was. She was also able to tell them her birthdate.

After an MRI, they discovered brain bleed, apparently due to the blood thinner Eliquis being used to prevent further clotting.

There is also a possibility that a caught migrated to her brain.

She is currently entirely unable to speak, is extremely lethargic, although we’re not entirely sure if that’s just because she was up all night undergoing tests but even last night she was able to walk to the bathroom with minimal help.

They have stopped blood thinners, which of course presents the danger of more clotting.

The hospital basically says there’s nothing else they can really do, we are stuck between a rock and a hard place so we are waiting for the cancer institute to approve her for a transfer. She was scheduled to begin treatment on Thursday.

The doctor said that getting a transfer approved is like a Hail Mary, and if it’s denied, without directly advising us to do this, they indicated that our best bet would be to just drive her directly to their emergency room, which is an hour away and basically forced her to be admitted .

She turns 41 this Saturday. We have four children, ages, 20 months, a little girl… and three boys, one who just turned four, another who just turned six, and another who will turn nine in February.

They all love their mama deeply, and I am absolutely terrified of what’s coming.

I am so scared. I can’t eat, I have cold sweats from anxiety.

Because of her career, we decided that I would be to stay at home parent. I have no prospect for employment at this time, at least not employment that would care for four children. She does have life insurance, we do have a decent amount of money saved, and we have a gigantic support structure and I know nobody is going to let my children suffer, but I am still so terrifiedthat they are going to lose their mama.

And of course, I’m terrified that I’m going to lose my love. Our relationship hasn’t always been amazing, we are you more than either of us would like to, and we didn’t make the most of every day, but I love her with all of my soul and I don’t want her to leave.

I’m not asking for reassurance that everything will be OK because I know you can’t promise me that. I’m not necessarily even asking for advice unless someone out there has some sort of genius level idea.

I guess all I’m really doing here is venting this out, and asking for your prayers and best wishes. I know everyone here has their own story, not all have had positive endings, and I’m not sure whether mine will or not. But I am begging for a miracle.

My 60 yr old husband who weighs 180 lbs was recently diagnosed with T4 Laryngeal Squamous Cell Carcinoma (voice box) and he just received his order of Ivermectin 25mg and Mebendazole 250mg which comes together in one pill. He also has Peripheral Artery Disease with stent placement. His ENT Surgeon is rushing him into surgery to have tumor and surrounding areas removed including Thyroid gland. We have asked for a referral to have the surgery performed in Boston because they specialize in these types of complicated and complex surgeries. In the meantime, we need help. How many Ivermectin and Mebendazole should he take a day and for how many days? What other vitamins, binders or supplements should he be taking along with the Ivermectin and Mebendazole? I posted this on X also and a doctor reached out to me, for a fee he could get my husband started on a protocol but money is scarce for us rt now. I was also contacted by someone telling me to reach out to Dr. Makis. Any help would be greatly appreciated! Thank you.