Cannibus oil ??

[Louforjack]

Hi all, just wondering if anyone has ever tried cannibus oil for ET. My son is having lots of issues and we are looking into alternate treatment to hydroxy. Being in Australia we can't get access to ruxilotnib, which our specialist thinks might be a better option. Interested in alternate treatments. Thanks

[beetle]

You might get some answers from Facebook page Medical Marijuana and blood disorders

Best wishes, Jan

[Tinkerbell13 in reply to beetle]

Hi - have heard excellent things re this, but not yet relating to ET. If interested in alternative ideas, I do recommend Turmeric, which now been taking for ET for 8 weeks and feel so much better and platelets stable (if still high) so early days before will know just how effective it is. Like your other reply, wise to check out everything, as thoroughly as you can. Best wishes for your son, and yourself, Tinkerbell

[Lainy1 in reply to Tinkerbell13]

Hi can you send me a link to buy the turmeric. Im sick of how chemo zaps my energy and have bone pains. Best wishes lainy xx

[Tinkerbell13 in reply to Lainy1]

There is a very good one called Pukka and also Nu U (organic turmeric curcumin and organic black pepper) - but getting these in UK, so not sure if available for you? I take 600 mg a day. Best wishes, Tinkerbell

[Louforjack in reply to beetle]

thanks Jan

[zvinkovic]

Hi,

I was diagnosed with ET 18 years ago, I was 19 at the time, and at first I was treated with Hydroxy because I had a blood clot and we needed to get the number of platelets down as soon as possible. But later I developed terrible acnae and very low immunity, there was no flu or cold that would pass me by, so I switched to Interferon injections. Although it is a pain in the **** to inject every day, there is some evidence that interferon is the best medicine for young patients, and for now it is working for me.

I am JAK2 negative so ruxolitinib wouldn't work for me even if it was approved for ET, but it is too expensive and since ET is not life threatening condition I don't believe it will be approved soon. Even interferon is used off label for MPNs and that is why some patients don't have access to it.

If you don't mind me asking, how old is your son and what issues is he having? Maybe someone here can help.

Best wishes

[Louforjack in reply to zvinkovic]

Hi

Thanks for getting back to me. Jack is 17 now but was diagnosed when he was 10 after having a stroke and his platelets were 1800.

His Dr is happy to try interferon, but said the big side effect is flu like symptoms. DO you suffer from these ??

His issues range from headaches, nausea, generally feeling really unwell when he takes hydroxy.

His other issue is he bleeds because of the aspirin he is taking but because of the higher platelet count he gets large hematomas that don't dissipate.

He is Jak2 positive, and interferon is on the PBS system here in Australia. so we will try that if we can't get access to ruxolitnib from OS

[zvinkovic in reply to Louforjack]

Hi,

I am so sorry your son has to go through so much at such young age, life really isn't fair sometimes.

As for the Interferon, yes I did get flu like symptoms but only when I started injecting, and because I didn't believe that you can really get that bad chills after injecting and I didn't take paracetamol at the proper time, that is at the time of injecting. It turned out you really can get the worst possible chills, but after taking paracetamol they went away in maybe an hour. So, a lesson learned to take the pill around time of injecting. Also, I later learned it is better to start on a lower dose, so your body could adjust more easily. It takes about two weeks for the body to adjust.

Also, try to get pegylated Interferon, that is a slow release form that you inject once a week and has less side effects. Here in Croatia it is not approved for MPNs, so I don't have personal experience with it but hope to maybe get it in the future.

Interferon is so far the only medication that can induce remission and the only that can reverse fibrosis and those are the reasons I am sticking to it. I sometimes feel fed up with injecting and having a fridge full of boxes with injections, but I believe it is for now the best choice.

Wishing very best to you and Jack, and if you have more questions regarding Interferon or anything else please feel free to ask.

(I can't put a photo of comparison between all medications available for MPNs here in the answer, but if you would like to have it send me your e-mail address here in the reply or in a private message and I will send it to you)

[socrates_8]

Hi Louforjack...

Not sure if what I have to contribute will be all that helpful... However, I shall try to do so in any event.

I was originally diagnosed in Sydney as having ET in May 2016. Later, after the results of my BMB reclassified me as early MF, I was finally given Jakafi & my life slowly improved.

Prior to that, I really struggled w/ Hydroxyurea (HU), & Interferon injections every two days. Eventually, I was unable to tolerate either remedy. The HU was so incredibly mind-numbing for me, & the Interferon dramatically increased my already obvious depression.

The Jakafi has helped me immensely.

However, I do still suffer in many ways w/ extreme nausea & fatigue, & I still have quite severe bone & joint pain from time to time.

I am also seeking access to Cannabis Oil (CB), & have some friends sourcing some for me to try but as yet I have not, and therefore do not know whether it is a fallacy or otherwise as far as making my own MPN condition more manageable than it is at the present or not (?)

I promise to keep you posted & when I know more I will try to message you again.

Best wishes

Steve

(Sydney)

[Louforjack in reply to socrates_8]

Hey Steve that is really helpful! the big question is how did you get jakafi in Australia ?? We've been told that we can't access it here so I am now looking into any way we can get access overseas.

On the cannibus oil if you need help with access, let me know. I have stage 4 breast Cancer and take it daily. I find it helps with Pain and even mood a little

[socrates_8 in reply to Louforjack]

Hey LouforJack...

I have just been contacted by someone in NSW about accessing Cannabis oil (CB).

I am hoping that it will also help w/ my bone & joint pain, fatigue & nausea. I will possibly do a drive north shortly, as my specialist does not seem able to overcome the many obstacles in obtaining this as a treatment alternative.

With all due respect aside, 'Big Pharma' pays medico's in a number of ways for issuing cytotoxins as opposed to natural or alternative remedies currently unrecognised by our governments etc...

The medical profession has what I might describe as a 'scale' for determining whether a person is eligible for Jakafi treatment or not.

Your son is obviously quite young. What were the results of his Bone Marrow Biopsy (BMB), or has he not had one as yet?

Often, one would be required, as blood tests alone might not always adequately portray a person's MPN condition & specific type of genetic cell mutation alone etc.

However, your medical professionals are far better placed than I, & hence, you might need to keep pushing them for better answers.

MPNs are a relatively new phenomenon in the Australia fora... Many GPs are still only just learning about what ET is & is not etc... in my view... THat includes the specialists too... in my view (& in Australia in particular of course).

Best wishes

Steve xo

PS. Is your CB coming from northern NSW?

[light]

Hi, I am ET Jak2+ patient and when I was on Hydroxy I manage to get in touch with Canadian company that produce cannibus oil and when I explained to them what illness I have they were very honest with me and told me that it would not help me at all. After two and half year being on Hydroxy, I switched to Pegulated Interferon Alpha 2 and been on it now three and half years. For me it works better.

Wishing you and your son well.

[Mazcd Partner MPNVoice]

Hi, I am sorry to hear that your son is having issues with his treatment, it would be best if he spoke to his consultant about a different medication which may suit him, i.e. Interferon. It is also a good idea to discuss with his consultant about wanting to try alternatives, like cannibus oil, it may not be the best thing for him. Best wishes, Maz