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#196883 - 08/09/18 12:01 AM Re: Recently Diagnosed [Re: MarvB]  
Joined: Apr 2018
Posts: 31
MarvB Offline
Contributing Member (25+ posts)
MarvB  Offline
Contributing Member (25+ posts)

Joined: Apr 2018
Posts: 31
Michigan
Hey Christine, Yea, your experience with an Oncologist is what I've heard from other people. I'm not sure why mine is being so elusive. Thank you for the warning, but Rick Simpson doesn't sell the oil. He used to give it away until the Canadian Government got after him. Now, he just tells people how to make it and doesn't charge anything for the advice. The expense involved is in the amount of pot it takes to make it. He doesn't sell that either. I could legally grow it but that takes time. The oil itself is just diluted down marijuana of a specific strain. I've never heard anyone overdose and die from marijuana. I was never a marijuana user.until I got the cancer. Now I use THC oil for appetite and pain and CBD oil for pain and to relax me. They do work. The Rick Simpson oil is just a very high concentrated version of those two extracts plus other cannabinoids that are in the plant..The worst thing it can do to me is get me high. I'm not thinking of taking it in place of the radiation/chemo but in addition to. I would like to know if anyone else out here has tried it as a cure. The way my radiation is going I need an alternative. I missed another dose because of my swollen tongue blocked my airway. One of the ladies doing the treatment ran out and got the mask off. She said she could see that I was turning blue. They're looking for alternatives to me being on my back.


Bad Golfer
#196885 - 08/09/18 02:13 AM Re: Recently Diagnosed [Re: MarvB]  
Joined: Jun 2007
Posts: 10,051
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,051
PA
Arent the techs able to move the table so you are laying more on a slant than flat? The radiation machines can move all kinds of ways to get the best position for your treatments. Im guessing laying on half of a 45 degree angle (22.5 degree angle) would be easier on you than the regular conventional table position.


PS... Marv, I dont always comment on your posts but I do read every single one of them. I marvel at your ability to face head-on everything you are dealing with no matter what gets thrown at you. Most people wouldnt be able to handle even half as much as you. I greatly admire your courageousness and perseverance!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196890 - 08/09/18 01:38 PM Re: Recently Diagnosed [Re: MarvB]  
Joined: Apr 2018
Posts: 31
MarvB Offline
Contributing Member (25+ posts)
MarvB  Offline
Contributing Member (25+ posts)

Joined: Apr 2018
Posts: 31
Michigan
Hey Christine, they suggested making an appointment to elevate the machine to the maximum and have a new mask made, I asked them why we didn't just elevate the machine I was sitting on to the max and seeing if it was going to work, especially since my tongue happen to be swollen and that's the only way we would know. They did and it didn't work. They said another alternative might be to lay on my stomach but the dose wouldn't be directed as accurately as if I was on my back. After I got home I started to think it through.and, in 16 treatments, I've had to miss three because of my tongue. If that trend continues I won't have missed many more than if I was having treatment around the Christmas/New years holidays. I realize missing doses does have an impact on the effectiveness of the treatment, but if I don't start to average missing any more than I have, I'll stick with what I'm doing. Thanks for your comments and your suggestions.


Bad Golfer
#196895 - 08/10/18 04:49 PM Re: Recently Diagnosed [Re: MarvB]  
Joined: Apr 2018
Posts: 31
MarvB Offline
Contributing Member (25+ posts)
MarvB  Offline
Contributing Member (25+ posts)

Joined: Apr 2018
Posts: 31
Michigan
Wow,I just noticed that I violated the rules regarding alternative treatments. I won't mention that stuff again. I do have a question though. Does anyone know if clinical trials are considered alternative treatment on this board? They aren't proven. The reason I ask is because the doctors give the radiation/chemo treatment very little chance of working. However, I have to complete one accepted treatment method before I can get into a trial. So, if I do get into a clinical trial, can I discuss it on here? I don't want to get cited twice. Thank You


Bad Golfer
#196896 - 08/10/18 09:12 PM Re: Recently Diagnosed [Re: MarvB]  
Joined: Jun 2007
Posts: 10,051
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,051
PA
Marv, dont worry you are ok!!! I completely understand your posts and the reason behind them. This sort of thing isnt always black and white. I know 100% that you are not mentioning something here to profit from it or to encourage others to try it where it could be harmful or even deadly in certain situations with some patients. If there is to be further discussion of those types of things OCF prefers to have those conversations taken off the open online forum. Posting here is public so anyone from anywhere can read things at any time 24/7/365. Our site gets thousands of views every single day from people from all over the world. These people usually dont bother registering or setting up an account, they just come here to read and learn. Where this could turn into a problem is if someone is taking advice that was given to a member who has already shared their medical situation so we have a bit of a background and can help them with pretty specific info. We see it here all the time where newer members want to compare their situation to someone else who they feel has the same situation as them. Too often, without much info or understanding that its not possible to have an equal comparison. For example ... if you take 20 people who are all say 44 years old, 5'11" and weigh 180 lbs, male, HPV+, Caucasian brown hair/blue eyes, have all had the same vaccinations, all live within a 25 mile radius in NY, NY, they all have the same tumor size, stage and location, are all given the same treatment plan and all start treatment within a few days of each other, they all even have the same B+ blood type and medical history, number of children, middle class white collar office jobs, same daily routines, activity levels, same type of sports participation and they have the same type of diet, etc. On paper those 20 people appear to be nearly identical but they are still not an equal comparison as every single person is a unique individual and will react in their own unique way to medication, medical procedures, and recovery. Those 20 people have different DNA with different hereditary traits and their own different resistance to diseases. Sorry about my long explanation about the "everybodys different" principle! What is visible on our online public forum could be easily misunderstood and taken out of context by someone who is not that fluent in English or how our forum operates. They could also be desperately searching for help and in their frantic quest to be well again, not think things thru completely and are grasping at straws when trying to find similar situations which may be harmful to them. Medical things are never as cut and dry as they appear and no 2 patients are ever really the same with the same reactions.

Clinical trials are perfectly fine to discuss. Please make sure you ask the people running it if you are allowed to discuss it on an open public forum or our message boar. There are often all kinds of fine print and legalities when it comes to trials where you may be required to sign contracts vowing to keep everything confidential. Often those types of things will have patients who get the real medicine and others who are given a placebo but the patient is never told which they receive. I cant remember the website but there is one that lists all current trials. Some trials are only available at certain treatment facilities while others go by country or some will have several countries participating. I hope you are able to get into a trial which is showing promise and it works its magic to eliminate the cancer for good.

If you ever have questions about the forum just ask. I check in frequently and am always happy to help all of our members. Have a great weekend!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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