Living with lung cancer - Introduce yourself & come say hi

Good morning @lizdorn. Have you heard from Mayo Clinic yet? How are you feeling?

I should have said that I have non small cell lung cancer.I do not use inhalers. The only other thing I used initially was not from concentrate tomato juice as I had read on an American site that it might help to stop cancer becoming metastatic.I do not class myself as brave only realistic. The brave people are those firemen who went into the Twin Towers.
The other reason I turned down traditional treatment was that it is not good for elderly people because chemo kills good and bad cells and when you are old you do not replace the good cells quickly and thus the bad ones can spread much more easily round the body.
A lady I know who also lives in Staffordshire was diagnosed in summer 2018 with Grade 3 aggressive breast cancer 33 mm and lymph nodes in her neck and armpit 25 mm. She used a similar CBD oil and in spring 2018 the cancer was 7 mm and the nodes 4 mm. She recently said the cancer had started growing again but after more oil it was going down again.
I do not think that CBD oil is necessarily a cure but if a person has inoperable/terminal cancer then the oil can prolong the time you may be alive.

@gazza- Good morning and welcome to Mayo Connect. I'm glad that you found us. What a great story you have! Other than CBD oil are you taking? Do you use inhalers? What kind of inoperable lung cancer do you have? Life is a mystery, isn't it. Somethings, that are "not suppose to" happen do just that. But there is very little known about the effects of CBD oil and it's benefits for a lot of things. I'm not suggesting that CBD oil did not have an effect on your cancer. Anything can happen and it's certainly is wonderful that your cancer is literally only hanging on by a thread.
You are a very brave man to have turned away suggested treatments, but as you say, and I do agree, the quality of life certainly is of upmost importance.
"There have been recent news stories about the potential promise of CBD and/or THC oil and fighting lung cancer, such as these news stories:
https://abcnews.go.com/Health/Healthday/story?id=4506595&page=1
https://metro.co.uk/2018/03/25/could-cannabis-help-cure-lung-cancer-this-man-thinks-so-and-hes-already-spent-1-5m-on-research-7266643/
However, you'll note that both articles are quick to point out that any potential positive effects have only been studied in petri dishes or on mice in a laboratory (in vitro). This is not the same as testing and discovering positive effects in humans. So far CBD/THC is still less effective than current drugs and dosages have not been tested or proven." CY

Here is more information about studies done so far in vitro from the National Cancer Institute: https://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq#section/_7 (medical professional version)
https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq#section/_3 (patient version. See answers to questions 6 and 7)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043845/
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/is-cbd-safe-and-effective/faq-20446700

I am an 84 year old guy. In early September 2016 I was diagnosed with inoperable lung cancer. The cancer was 25 millimetres with a very thin tethering to the inner lung lining. In December I had another CT scan,and the cancer had grown to 30 mm approx and the tethering had increased to 27x26mm.I can only imagine it was growing steadily by September 2017 when a friend suggested I try CBD oil as it might help me. This I did. I initially used about 3 drops under the tongue 3 times a day for about 10 days and then decided to use an eye dropper full ( 9 drops ) twice a day for another 10 days I left it under my tongue for 2 minutes before swallowing it.I then stopped taking it because I did not know if it was doing me any good and I also disliked the taste.I managed to have another scan in November 2017 and the result was amazing. The cancer had had near total resolution with only a small piece of soft tissue remaining 16x9mm. The mediastinal nodes which had been growing in size and number were now sub centimetre.The last scan I have had was in July 2018 and the only thing mentioned on the report was a left hilar node size 12mm. The CBD oil was 2% strength and made by a labs in Spain and cost £20 for a 10ml vial and I bought it from a local health food shop . I live in Staffordshire England and only THC is illegal here. By the way I had refused chemo/radiotherapy because I preferred quality of life to nasty side effects.

Merry, that would cost a fortune here and I am not physically up to it. I think I need to call so done this morning or go to ER. My whole chest is hurting. No temp. Need to get dressed. And, more hair falling out.

That was close! Nope, my hair is definitely coming out. Yes, put make up on everything Rey day.

Margot-I really wish that you would move closer to Stanford. I know, I know you don't want to. If you aren't happy with your "team" then your attitude will be negative and this will effect your treatments and possibly your outcome. Attitude really does make a difference. It seems as if your need for better medical attention might outweigh that of your husband's right now. He could always get another dr, if for only for the time that you need to be there. You could stay at a Ronald McDonald house or even rent a small apt. Please think about this.

@margot- Can you ask him to talk more, explain more and suggest more? I'd be ready for some tranquilizers if I had a doctor who responded like a snail. Doctors have to step up or get out of the profession.

@margot- I thought that all chemo caused hair loss so my friend came to my house to give me a buzz cut. But just before she plugged in the "buzzer" she asked me if I was sure that I would lose my hair. She had me call the infusion nurse and I learned that the chemo that I would get would not necessarily cause hair loss. Margot- I was seconds away from losing my very long, thick hair! I only experienced hair thinning, not that anyone would have noticed because of all my hair.
Before each chemo session I put make-up on and dressed nicely, even if I had jeans on! It was a small thing, I know, but it made me feel human for a bit!

The port is a semi-permanent IV in which blood can be drawn from each time blood tests are needed and they also use it for your chemo/immunology it avoids having to be stuck by needles constantly - also if you have "difficult veins" such as those which have a tendency to roll and seemingly always avid the needle resulting sometimes in several misses or manuring to get a needle inserted properly for either a blood draw or infusion; or if you have fragile veins or veins that tend to "blow" just after a needle or IV is set-up its your choice to have one or not - many choose to have one as it simplifies everything besides the constant being stuck constantly. the "if needed" was probably written in case you change your mind that there is a standing order for it to be done - or in case it becomes impossible to draw blood or insert an IV with out great difficulty the motto is "Due no harm" I at least commend him in that it seems to be a standing order that "if needed" you do not need to await getting the approval which could take only minutes or hours depending on how busy he is with other patients. It can also be used in other emergency situations etc by other health officials for blood draws, administering medications etc.