nf1 weed strain

NF1 and Medical cannabis – Neurofibromatosis

Hi everyone,
I am a new member here. I have been diagnosed with NF1 as I child. I have numerous tumors most of them are in the neck, back of my head, and spinal cord.(mostly c1-c7) .

For the last year ans half I am using canaabis (with perscription as cannbis is illegal in Israel) to releave pain. In general I can say it has good effect. Having say that however sometimes it increases the pain. on occasion hyper sensetivity in some of the nf tumors or lower back pain. It seems that cannabis is better for me than using Cymbalta (duloxetine) and certainly causes less damage than oxycodone.

I have a couple of questions,

a) Are there any memebers here who use cannabis? Any recommended starins? (it appears that Indica is better than Staiva for me)
b) I have found a new small fibroma on my neck a couple of months ago. It has been identified both by my doctor and MRI as nf related. Is there any chance it was casued by the use of cannabis ?

Thank you,
I wish you all merry Christmas and happy holidsays

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9 Replies
    December 26, 2014 at 7:59 am

Are you sure you want to delete this reply?

I can tell you unequivocally that marijuana use – be it recreationally or medically – will not cause new tumors to grow. In my case, during the years when my condition was the most dormant, I was using marijuana profoundly heavily. Logic dictates that if marijuana use causes tumor growth that my condition would have flared up during those years.

They do not follow threads, so click reply to respond to me please.

  • December 26, 2014 at 1:33 pm
  • In Reply To 5834554 by Artie_Dee
    • Report

Hi Artie,
Thank you for your response. I am aware of all the benefits of Cannabis both recreationally and medically. Both my mother and brother were using it . Actually both of them had NF1. They both passed away. My mother from stomach cancer (57) and my brother from bone cancer (27). Cannabis was a great help for both for the pain and for the treatment side effects. I am 38 and I can say that I was not a user before. (a few times only).

I understand that it is not likely for Cannabis to cause new tumors to grow. But, to be on the safe I was looking for reports that suggest otherwise and specailly related to NF1. I couldn’t find any. šŸ™‚

Do you have any idea if there are cannabis strains that are good for NF?

  • December 26, 2014 at 2:45 pm
  • In Reply To 5835011 by OrenB
    • Report

did you consider the inhaling on your lungs? it is smoking and that is not good for our lungs.

  • December 26, 2014 at 4:55 pm
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I am interested in the medical use of marajuana. If I were to use it, however, I would use the cannabis oil or check out oral alternatives. I would not want to add the risk of lung cancer associated with smoke inhalation. NF is already a risk factor, why add to it.

Have you considered turmeric supplements. Turmeric, like other pain relievers, is a good anti-inflammatory. Besides, it is healthy in a variety of ways.

  • December 27, 2014 at 4:53 am
  • In Reply To 5835123 by lemondrop1
    • Report

Smoking is not the only way to consume cannabis. I often make cannabis butter which I can use to make eatables. (cookies,omelletes and many more)
I agree cannabis oil (rick simpson oil) could be better for me.The problem is I can’t get it here where I live. The oil I can get at my dispensary
is not pure since it’s mixed with olive oil or similar.

If you wish to smoke cannabis I would suggest using a vaporizer. it does burn the mixutre and is cleaner way to inhlae it.

I have never heard of turmeric supplements, I will look for more information about it.

  • December 27, 2014 at 6:02 am
    • Report

There have been conflicting reports about how smoking marijuana affects the lungs. People who smoke marijuana AND tobacco have a much higher risk of developing lung cancer than straight tobacco users. But people who only – and have always only – smoked marijuana have a lower risk of lung cancer than even non-smokers.

Of course, inhaling heated smoke can be damaging to the trachea, cilia, and lungs. But one must weigh those risks with the benefits, just like with any other medication. Someone mentioned the vaporizer. That is excellent. There also “bongs” which can be filled with ice and water to cool down the smoke. Edibles are also excellent choices.

There are also strains – one, that is grown in California and called “Charlotte’s Web” – which contain very low levels of the intoxicating THC, but is very high in the therapeutic CBC. It was actually developed for children.

Be careful what studies your review. Many pharmaceutical companies put out erroneous information to protect their own bottom line.

Yesterday I was suffering from terrible stomach cramps. When my neuropathic pain started to peak, I took two hits. Five minutes later, even the cramping stopped! I am truly beginning to believe that this is a miracle drug.

  • December 27, 2014 at 8:34 am
    • Report

Hi Artie,
Again you are right. I have found all arround the web “studies” of behalf of drug companies. I can say one way to know this is a study of this kind is that these studies usually ignore any befenifts cannabis may have. Of course, we don’t know everything about cannabis but We know for sure it has good qualities.

One of the strains I use is called “Avidekel”. It’s has been deelopped by the Israeli “Tikun Olam”. It has about 15-16% CBD and nearlly no THC.

  • December 27, 2014 at 11:03 am
    • Report

Thanks for all the info on MJ.
I would like to try some but Cannot.
Due to risk of being Fired at work. and (less concerning) it is Illegal.
Although Wisconsin did recently pass a (Very Restrictive) law allowing research on Low THC (Non Psycho-Active) variations of MJ to treat primarily seizure disorders.
Figuratively speaking: They have drilled a hole the diameter of a chin whisker in The Hoover Dam.

  • December 27, 2014 at 3:34 pm
    • Report

I know that you are interested in cannabis because of its pain relieving benefits but I think it could be useful in treating/preventing tumors/cancer. When my daughter was first diagnosed with NF because they found a large optic glioma I was reading a lot of research on these types of tumors. The only positive effect reported in the literature besides the 30 percent chance that chemo would impact the tumor was cannabis. A young teen who had an optic glioma reportedly began smoking MJ and succesfullly shrunk her optic glioma. Of course it is only one subject. but the results were more impressive than chemo as I recall. Shrinking a benign tumor is pretty difficult. Sometimes these tumors do spontaneously regress, however, so we don’t know for sure that her positive result was due to the therapeutic benefits of cannabis.

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    NF1 and Medical cannabis – Neurofibromatosis Hi everyone, I am a new member here. I have been diagnosed with NF1 as I child. I have numerous tumors most of them are in the neck, back of my head,