CAS1

Hello CAS1, I just found your question about a possible heritage link and cancer mutation interesting since I am of Italian heritage and I have the mutation. Do you have any clues on what comes next?

I miss hearing from you, CAS1. I hope you haven't been around because you're too busy living life and not because you are sick.

Hi Cas1, you are an animal lover? me too. I have 4 small dogs, used to be involved in Greyhound rescue, volunteered at the local pound, etc. etc. etc.

Hi, I saw your message regarding pd-l1. My husband was to begin this treatment until his insurance company stated they would stop paying for any cancer treatments after the pd-l1 treatments. So now he's waiting for drs to reschedule his surgery. How do others get around this obstacle?

HI CAS1, I just wanted to stop by and let you know I have missed seeing your posts. I hope you are doing well.

Thank you CAS1, what is an NCI facility?

It would be good for you to check out a song by Bob Dylan called "Its Alright Ma, (I'm Only Bleeding)"

The movie (and the book) "Shawshank Redemption" nod to him with the loose quote you mistakenly think was from the movie script.

Hi, what you wrote on jalemans question was very nice but I lost a very god friend to a throat cancer. The docs thought they got it all wirh small surgery, chemotheray & radiation. It came back 4 years later. Then they tried a Big surgery, more drugs and radiation. It came back so they tried drug studies. My friend died during the secind drug study.

Why in the world would they pick head cancer patients? maybe the happy/positive thing is to control us, besides blaming us. I found out this year that we have the most unpredictable problems, and so called cancer experts can't really figure out what's going on. We survive treatment, but even if the mouth and throat isn't affected by the cancer, we often starve to death. We have more deaths by starvation than stomach cancer patients. It took me about a year before I could bend my head down without falling over. All of the blood rushed to my brain, and my veins couldn't control the blood flow. Many get into a car or truck after radiation and the glass seems to magnify the sun beams, and they attack us. At least I didn't do that in any buildings or homes that has huge glass windows or glass walls. So, we don't do yoga very well. It took me about a year before I could put on both shoes and tie them without taking a rest. I know that many medical experts consider us to be addlepated. We get mouth and ear problems. Our muscles constrict and twist us from radiation and surgery. I still keep my blinds closed, sleep irregularly-not insomnia. I got into a fight at a cancer support this year--I tried yoga, I got where I could put on my shoes without head problems. But holding my head down caused a slow build up-- I thought-oh, oh- left got a horrible headache and could feel the veins in my brain. I drank strong coffee and then had a coke for the caffeine like at the heart testing place. I called the bosses of the the leaders and complained. I decided to go to the next meeting. They came in and said- we had a crash course on head cancers, head radiation, and they went on about starving to death, falling over with a head ache if you point your head down, and light attacking us around windows. I thought that I was going crazy, but a chaplain to me that almost everyone with head radiation was the same way- some worse. Why didn't they do prostrate or BC, where they have an idea of how the people react. That seems like it would more productive and scientific. why would they pick on cancer patients with visible disfigurement, cancer and surgery taking your face and brain apart. pick on people where nobody really seems to understand, and we're losing our mouths, noses, eyes, ears, chins, faces and brains to surgery and cancer?
I told my son that in spite of the hate toward Muslim women, I almost feel like putting on a Burqa, That's before my nose straightened out-and stuff like that. I did wear scarves like Iranian women to cover up on bad days.
Thanks for the posting-maybe this was an insidious way of observing us.

Hi your answer in another post regarding clinical trials that positive attitude does not influence survival. Do you have access to those to pass them on to me? Tired of people telling me being positive changes my outcome. I don't believe that. Thinking being positive may help in approaching and complying with treatment for me but not if I survive or not. Thanks I hope you are doing well.

Well, such ugliness directed towards you. I fail to see how theoretical inhaled mold spores can lead to anal cancer, especially such a slow-growing one that it sat there for 13 years before a doctor took it seriously. The second article did talk about a link between some food molds and liver cancer. That is definitely not squamous cell carcinoma, either.
Funny, I haven't heard any alarm about black mold for years and years. The first article linked was well over 10 years old. Weird......

Here is some comic relief for you. With a large kernel of truth.
https://m.youtube.com/watch?feature=youtu.be&v=HMGIbOGu8q0

Hi CAS1; Please check item #4 of the article and don't malign me again any more:

https://www.yahoo.com/health/from-bacteria-to-mold-health-concerns-abound-in-205537109.html

Best healthy wishes

Hi CAS,

Thank you for writing. Yes, I am doing good. I have been getting bone strengthening medicine (Zometa infusions), every 3 months, but will be on Prolia (Xgeva) shots twice a year starting next year after having a full body bone scan and my yearly CT scan (check osteoporosis and cancer). It has been 5 years since my lung surgery, (Feb 28th will be 5 yrs from end of chemo) so I am very thankful to be alive and am doing very well!

My Mom is 101. We moved her to a senior center near us just after her 100th birthday. She really did not want to go, but she was not safe at home anymore. Her skin is very thin, so it is the skin tears that we are fighting now. We need to change her wound dressings everyday. Her circulation is not very good, so it takes about 6 months to heal. I am glad she lives nearby. We have not sold her house, so we are also taking care of that.

We recently lost my aunt, Mom's older sister, at 103. She was in a senior center in Arizona, near her son and daughter-in-law, but will be buried at a nearby cemetery here in California. Her family will be having a small memorial ceremony at the cemetery next week, but Mom will not be able to go. It will be nice to see my cousins again. We sort of grew up together and are very close.

We also recently lost another aunt, Dad's brother's wife, to breast cancer at age 96. She decided against having surgery and chemo for the breast cancer because of her age, and other health problems. She fought leukemia for 15 years, and became blind from macular degeneration, but she found ways enjoy what she loved the most by learning new skills. She was a wonderful person.

My husband's brother-in-law, who is quite a bit older than we are (just turned 90), was just diagnosed with small cell cancer (not small cell lung cancer). He was never a smoker. He noticed a large lump (lymph node) under his arm about a month or so ago, and has gone through many tests. Last week he had a stroke (blood clot to the brain) while having dinner at his daughters home. Luckily they got him to the hospital very quickly and he is doing much better than we thought he would be able to do from what the MRI of the brain showed. No mention of cancer with the MRI of the brain. While he was there, they did another biopsy of the lymph node and determined that it was indeed small cell cancer - of unknown primary. They were planning to do a PET/CT today to help find the best treatment plan. I think treatment will get started soon (if he chooses to do it), since small cell cancer is so aggressive and since it must have spread to the lymph node from someplace else. The family is very happy with his oncologist and all the doctors he has seen so far. He seems to be "hanging in there," as best as anyone could. I heard that he was taking a walk with the physical therapist the other day and learning how to use a cane. He says that he will teach his wife to use the cane correctly also. His wife is unstable on her feet too. The daughters live locally, but do work. They are doing everything they can do to help their parents. There certainly are challenges one must endure with life.

How are you doing? I have seen some of your WhatNext comments, but have not been able to get involved as much as I would like. I am behind in all the stuff that needs to get done around the house. I like to keep up with WhatNext because it is good know what is happening with cancer research, and it is good to be able to help other that are going through what we went through. Cancer is such a complicated, difficult, sneaky disease. You are quite the student of cancer research, and you share this great knowledge with everyone on WhatNext. Thank you for all that you do. You give us all hope!

Thanks again for your kind note.
--Journey

There are two people on this forum who are unusually cruel. I have been their victim as have you ... and, unfortunately, many others. Anyway, I just read some of the ultra rude comments directed toward you, totally unprovoked, and just wanted to lend my support. For what little it is worth, I really appreciate you and your knowledge. Thanks for sharing.

Hi! What kind of dog is the little Black and Tan dog on your picture? He looks like my rescue Maddux.

You're wonderful! Just saying!

You rock----- I caught 3 types of flu coming home from Japan, and passed one to my family--different symptoms-different incubation times. i survived, and I would do it again, but I don't have lung troubles.

Hello. Hope you don't mind but you posted couple months back on the newest FDA approved drug I think for lung cancer. Would you be able to repost that? I'm pretty sure it was you but I could be wrong. Thanks.

Cas1, did you tell the story how your beautiful dog smelled your cancer? If you did, I missed it. Sounds very interesting and would love to hear more.

Now i see your pups!! Duh!! I was looking for a separate upload and there they are as your profile picture. They are beautiful!

Ditto from me on the complete lack of guidance on how to get started with this. My personal take on the breakdown from my observation is that the medical staff takes for granted the difficulty for new patients, because they do this all day every day; and 98% of the patients have been there enough times to know whatever the routine is or isn't. There seems to have been a disconnect in the providers general ability to properly guide a patient on their 1st day of treatment. I tried to get the doctor to explain the MEDs, he delegated to the nurse; who is a very nice lady, but has difficulty adding the 2 numbers on the scale each visit to attain my weight; and has never been able to answer an indepth question of anykind regarding cancer or treatment. Instead the doctors nurse deferred to the nurse I would be seeing on the first day of my injection to go over my meds, and pertinent details about how and when exactly to take them. This did sit well with me because my appointment time was already in the afternoon; and I was not briefed on med by the nurse automatically; I had to really push for answers, and I did not get any good answers from the injection nurse either (had to track down and speak to the head nurse). Instead the injection nurse defaulted to "is doesn't matter...you can take the meds anytime today you want really." As if to suggest that she is somehow doing me some kind of favor, by giving me the freedom to take these "CANCER" meds anyway I want. Or even worse, suggesting things are so hopeless it doesn't matter... I felt that I needed to hear suggestions about how BEST to take the meds with regard to effectiveness, and tolerability; I really could care less about the freedom to take them when I want without knowing first what works best with regard to effectiveness and tolerability...

I̱ oikogéneiá mou ónoma eínai Pántos . Pánta o̱raío na antapokritheí álli̱ elli̱nikí̱ !

Start with section 3 or 2 first.
Wild ride coming....IF you can understand it and have an open mind. IF NOT this will be gibberish.

http://www.urantia.org/urantia-book/read-urantia-book-online

Hi Cas, agree with everything you told Christian. Cancer is a Big Thing but he has to realize it is not the Big Thing.Like you pointed out new treatments , new hope everyday.

Thank you for responding. What were your symptoms?
I hate obsessing and digging for information.....

Congrats on finishing active treatment, and thank you for answer regarding hemoglobin.The way they describe the shot, it is a little scary, but hemoglobin, I bellieve is the answer to approaching a more normal life and not being breathless after ten steps.

How do we know we are getting the best treatment from our cancer center ? Scared in Ky.

Dear CAS1,
I need some help about mutation testing. My husband had 2 surgeries and they have not tested for mutations. I think he is about to have a 3rd surgery. What do I need to ask about mutation testing? Will that be cover by insurance or not? I know you are very knowledgeable about that. Could you help me with that? I was trying to find a list about all the possible mutation that can be tested for, but I couldn't find it.

Thank you!

Cas, I think that he came here Sat night. One hound was outside, and the other next to me. I'm positive that I heard the front door open and shut. I thought I heard footsteps, and the door shut. I said, "Tom is that you?" and then I remembered that my son was hot-rodding across Texas.

The Bluetick went to the door-but not like it's dangerous, but alerted me. We keep the door dead bolted and a person either needs a key or a vehicle to ram the door.

The hounds went out back, and they parted and kept an independent patrol along the fence line for a little over a half of an hour. I got my guns out and loaded them in case.

If someone leaves to the street-the hounds are at the window, foaming-If anyone goes to the side, the hounds follow them inside the house, and one rushes out to make sure that nobody gets into the back. It wasn't a normal alert--

We've had 2 attempted home invasions. One I had to replace some 2X4s in the front door. My son and I put all of our weight against the door to help support it as we waited for the police. Another, they scared a traveling serial rapist so much that he left his bedroll and ditty bag with his trophies from other home invasion/rapes. The police were very glad to get it.

I began feeling very safe-and the hounds were relaxed-which isn't the case. I'm just being prudent.