Myelofibrosis and using medical CBD/ marijuana.

[Boriqua]

I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing. Got off of Vicodin because of new medical laws, was recommended CBD and Medical Marihuana in Vape form only. Every time I use it my spleen start hurting right after running out of time. I go to Moffit Cancer Centre and the VA both in Tampa Florida. Don't know what to do?

[Mazcd Partner MPNVoice]

Hi Boriqua, with regards to the Jakafi not working now for you, you need to discuss this with your haematologist to see what alternatives are available to you that you could try. With regards to the CBD and the vape causing you spleen pain, again, you need to speak to your haematologist about the pain you are experiencing when you use it. Are you receiving any form of counselling or support for your PTSD/anxiety? Best wishes, Maz

[Boriqua in reply to Mazcd]

Thank you, I just checked in to see my hematologist, and The BCD was recommended by my psychiatrist of 12 years. I have severe insomnia, PTSD I am 100 percent VA.

[beetle]

If you are still taking Jakafi you should probably be avoiding CBD oil. It appears to be contraindicated with drugs that state that you should avoid grapefruit. Jakafi is one such drug! As you need to leave 4 hours between the drug and the oil it doesn’t allow much time for the recommended 3 doses of oil if you take Jakafi every 12 hours. I ran the Jakafi and CBD oil through the medscape drug interaction checker and it didn’t mention a conflict. I have learnt that from FB CBD oil sites. I am seeing Prof Harrison in early Feb and it is on my list of questions to ask her. I’ll let you know unless Maz gets an answer before that.

[Boriqua in reply to beetle]

Hey buddy thank so much lve done so much research and no answer. Today is better thanks to you. Keep in touch. l have a state of Florida licence and I vape cannibis in accordance with the law

[Boriqua in reply to beetle]

Beetle you know your stuff buddy I am definitely trying what you said, I also found out that medical MJ, could stop many medications not work as they should.

[beetle in reply to Boriqua]

Unfortunately there is a widespread misconception that if it is natural it must be safe. But just think of all the poisonous plants there are around!! I really want to use CBD oil as my prolonged ET then post ET MF is causing me a load of problems now. I have been putting meds for MPNs into my body for nearly 25 years now and the problems appear to be all coming home to roost. It would be lovely to think that there is something out there that could help to realign my body and cannabis looks so promising. As I say, I will let you know what UK’s MPN guru says on the subject when I see her in February. Best wishes

[Boriqua in reply to beetle]

Thanks, beetle, I am searching along one of my Doctors are the best in this he works at Moffit Cancer Centre Tampa Florida. If I find out something also I will keep you in touch buddy ok to share information. What pisses me off my Psychiatrist of 10 years I am a war veteran recommended it to me got my licence for medical only vape the real deal high THC/CBD after 6 months of Jakafi 20mg it's failing on me slowly

[Daryoush10 in reply to beetle]

Hello. Could you kindly let me know what Prof Harrison said about CBD oil. Thanks

[Boriqua in reply to Daryoush10]

ehealthme.com/drug-interact... If you take any THC form it iteracts with Jakafi, and it will lower your platletes and raise your white cell count. I almost died. Read this study F.D.A. aproved No matter when you take it the drud stays in your body long time. Many people fail Jakafi for smoking or taking CBD then the doctor says jakafi failure and its not. Been there twice

[Wyebird]

Hi Boriqua, not knowing what to do is an awful situation. I have read posts from people attending the Moffit Centre. Both seem happy with the attention they are receiving.

It sounds like you need to consult your Haemotologist and explain everything in detail. Don’t hold back.

Good luck

[Boriqua in reply to Wyebird]

Thank you I will I see one on VA and one on Moffitt I go to next, you take care thanks for taking the time to getting back with me.

[Boriqua in reply to Wyebird]

I SEE 2 HEMATOLOGIST THEY DIDNT EVEN KNOW, IT BEING A NEW STUDY. i PROVIDED A PRINT OUT. AND THEY WHERE SURPRISE NOT KNOWING THIS AND WHERE TELLING THEIR PATIENT NOT TO DO IT. MANY PEOPLE HAVE DIED WHEN jAKAFI STOP.

[beetle]

I live in UK. CBD oil is legal as long as it has almost no THC in it. I want to use it for pain relief so I don’t have to go up to the next strength of morphine patches. I understand that the oil can help but THC has the better track record in helping pain. Like all drugs I guess it varies between individuals. Because the complete cannabis plant is illegal here it is not possible to do the clinical research that is needed. I have noted that big pharma seems to be waking up to cannabis and has stared buying up small cannabis producers. I wonder where that will lead!

[Boriqua in reply to beetle]

Your right the problem is the same here I have a licence for this state and it allows me to vape it, patch or liquid as high as 95% thc, the problem is interaction with certain medications but there is nothing to prove it, I am waiting for my hematologist to see what he recommends Igo to 2 different ones. If I find out something I will let you know you take care and best of luck, hang in there thank you for taking the time to share information.

[beetle]

One of the problems is that the doctors are largely in the dark too! Yes please let me know what responses you get. Take care

[Boriqua in reply to beetle]

I will buddy, I found this but the internet is unreliable unless it's from a valid source.rxlist.com/marijuana/supple...

[Boriqua in reply to beetle]

webmd.com/cancer/medical-ma... just copy and search stuff good to know.

[lavender007]

Hi there I am so sorry to hear of your health issues one thing at a time and one day at a time works for me.Wish I could say more than your not alone.Please talk as you must be struggling with such diverse symptom.

Good luck talk any time

Lavender

[Boriqua in reply to lavender007]

Lavender007 funny my email is ricanguy007, listen thank you so much for taking the time and for your great advice. I definitely will take it one day at a time cause this Myelofibrosis is making so difficult for most days, I finally got my for next week next week to see if my medication is failing and need to be adjusted or Vaping medical CBD interrupts the medication.

[Plumberasscrack]

Hello Boriqua, praying all is going well for you and at this time you have answers, I too was diagnosed with MF a few months ago.

Hopefully I will hear back from you because I noticed this thread is over a year old

[Boriqua in reply to Plumberasscrack]

This is the study report FDA aproved on Jakafi and cannibis use ehealthme.com/drug-interact... If you use jakafi your platlets will drop and your white blood count will go up. It happened to me almost didnt make it at an early stage.

[ZakICarey]

It is a good thing, it really helps. In general a lot of people do not know how beneficial is Marijuana and its products. I am smoking weed for relaxation and sometimes when I have anxiety problems. In past I have tried CBD products for sleeping and to be honest it really has a very good result. Guys if you want to find good weed products or CBD products then you can check karunahealthfoundation.com/ ... the prices are really very good and the quality is very high too.

[Busybee2022]

HiI'm a veteran also

I was diagnosed in 1996 with thrombocytosis. I got it from the Army base Ft Ord in CA. It progressed in 2006 to Myleofibrosis. I've been on Jakafi since 2006. Around d 2010 I changed my diet for 2 months to vegan/organic. I drank a smoothie daily sometimes twice a day and lots of raw fruits and vegetables(salad)daily, no processed foods,exercised 5 days a week, no sugar. Afterwards I added wild caught salmon a few times a week and organic chicken.

I believe the jakafi is now causing renal failure. My spleen is getting larger, but I haven't been taking my liquid turmeric in well over a year, so I started back. The doctors all say they can't believe I'm still here. They all deny its my eating habits, but what else could it be? Whenever I eat wrong. Stop walking my #s get worse. I go vegan a few weeks and eat clean My #s improve. I've been looking at adding organic cannabis oil and salve. I'll likely start by months end and add it to my daily smoothie. If you have any questions, just ask. I'm willing to share.