Interesting article

[Mostew]

An unusual story of success . (Very!)

Looking forward to to your comments !!

hpathy.com/clinical-cases/a...

[EmeraldA]

Really interesting indeed. What do you think? Worth a try? Has anyone on here tried this approach I wonder?

[Mostew in reply to EmeraldA]

I do feel that when , if our body/ mind is able to , it’s capable of healing .

Can hardly believe it BUT do believe

her . !

She sounds as if she has a great understanding

I have used homeopathy for years and know how it has helped me stay as well as I am despite having JAK 2 . I’m better than years ago . Good energy etc ..

I have just got in touch with my wonderful homeopath who unfortunately moved abroad to see what she says

Problem is finding someone good enough that you connect with.

I’ll let you know x

[EmeraldA in reply to Mostew]

Thanks. I will be interested in what they say. x

[Pte82]

While my wife was on Anagrelide and her platelets remained at a million she began using , with her oncologist's approval, tocotrienol from red palm oi. Each subsequent blood test showed a lower platelet resulting in her oncologist reducing her medication. Finally her platelets were in the normal range and Anagrelide was withdrawn. We thought that meant she was cured. A year later a bmb showed progression to MF.

[Mostew in reply to Pte82]

I am sorry to hear about your wife and hope she is managing ok

From my understanding of homeopathy it’s not about one remedy working and a permanent cure occurring ( always ) but an evolving process

That’s why a very skilled practitioner is so important . And an acceptance that our bodies are hard to treat.

[Pte82 in reply to Mostew]

Mostew, you have put your finger on the heart of the matter. MPN's are not about addressing a series of symptoms but understanding a progression. My wife was not told about progression only about trying to control platelets starting with Hydrea for nine years then Anagrelide for many more. All the while the platelets stayed high without a downward trend. So you can understand when she saw a lowering with tocotrienol ultimately keeping platelet counts in the normal range she felt the nightmare was over.

[Mostew in reply to Pte82]

Hope you don’t mind me asking .

Did your wife have regular blood tests in that year . ? And we’re all bloods in range

[Pte82 in reply to Mostew]

Yes, she continued regular testing with in range results for about a year. Platelets then began dropping triggering a bmb with results diagnosed as MF. That was 5 1/2 years ago. At that time, with memories of Hydrea & Anagrelide, she didn't want Jakafi and chose an alternative route. That remained until this month when Jakafi was begun to address the the enlarged spleen.

[Mostew in reply to Pte82]

Thanks for response .

[Cja1956]

Hi, Mostew,

Very interesting article. I was 52 years old when I was first diagnosed with ET Jak 2 positive. I was immediately put on Hydrea and have been taking it for 12 years. I didn’t find the site until about two years ago and now I believe that my doctor rushed too quickly to put me on chemotherapy pills. I was young and relatively healthy except for that. And now I have progressed to MF. I believe in doctors because my father was one, so I really didn’t question it.

Hope your mother continues to improve.

[Mostew in reply to Cja1956]

It’s difficult to know what to do for the best isn’t it . I hope you are managing progression

No it was person who wrote articles mother !!

I have JAK 2 pos . And resisted meds so far apart from daily aspirin . I’m 64 and diagnosed a year ago .

[Cja1956]

Well, my platelets were only around 600. But I had originally gone to my primary doctor for persistent headaches. After taking the hydrea, shortly thereafter, they went away. So I guess there is some merit to it.

[Mostew in reply to Cja1956]

Glad you are feeling better . I’m sure there is merit to it !

Have platelets changed ?

[Cja1956 in reply to Mostew]

That was 12 years ago. There have been lots of ups and downs since then. I suspected I had progressed to MF a couple of years ago but my doctor at the time didn’t think so, so I finally went for a second opinion to an MPN specialist. She did another BMB, and ultrasound, and tons of bloodwork and diagnosed me with post ET MF. I’ve been seeing her now for a year and I’m really happy with my progress.

[Jennytheb]

Sounds amazing. I expect in the usual NHS diagnosis there is not sufficient time to consider the depth of understanding needed to prescribe homeopathy? It would be good to feel that at least it should be considered. A heartening read!

[Mostew in reply to Jennytheb]

No chance of NHS considering it !!

Despite much success homeopathy has had such bad publicity. Majority of people arnt interested .

[Jennytheb in reply to Mostew]

Yes that is the answer but especially when initially diagnosed I was so shocked at having Hydrea that I wished there was an alternative route/medication.

[Mostew in reply to Jennytheb]

Despite being a long term user of homeopathic meds I don’t know if it’s ‘ the answer’

It obviously has been good for her . .

Trouble with trying alternatives to conventional approach is it’s SO expensive ,

[azaelea]

I have read this article with extreme interest. It certainly makes you think, are we doing the right thing?

[Mostew in reply to azaelea]

Oh Azaelea , it’s so hard to do the right thing . Beacause with us I dont think there is one . It’s a rare cancer and very little research and trials .

Also so little understanding of healing ..

I do hope it hasn’t made you feel to unsettled .

I’m still trying to go the ‘natural way’ and know one day maybe I will need to take conventional meds .

Did you go away ? Xx

[azaelea in reply to Mostew]

No, we didn't go away. Not yet. We were scheduled to go to visit our son and wife overnight this weekend but had to postpone till next weekend as they have someone putting new garage roof on this weekend. Don't like this new 'surge' in Manchester/West Yorks . Son is in Notts. so hopefully ok to go. We've definitely decided not to book cottage in Scotland in September though. Too many risks! It was the Bedding that finally decided me.

I do wish there was some medication we could have other than Hydroxy or other Chemo though. I did try coming off Hydroxy for a few months but got a GI bleed and clot in my toe to follow as platelets went to 800 so I'm back on the many pills again! Hey ho! Kind regards Fran

[Mostew in reply to azaelea]

It will be fine to go as long as long you stick to hand washing etc . Someone said Vick rubbed in nose adds protection when out

Even if it doesn’t . No harm . And I find it feels good ..

Hope you enjoy visit .

My platelets are 880 but as I feel so much better than I EVER have and no worrying signs , my constant is happy for me to wait before going on meds . Apart from aspirin .

She said I would need to if go up to 1500 but I think it would be wise to seriously think when 1200

Take care

X

[Wyebird in reply to Mostew]

Seems to me that in Molly’s mum’s case Molly found the right formula for her mum. I do believe and it happened to me, that some doctors try and fit your symptoms into one of their boxes.

Having said that I’m eternally grateful to my heamo team.

[Mostew in reply to Wyebird]

She sounds like a good homeopath . Helps to have family history . I don’t know about many of my family illnesses

Good to have supportive heamo team . My nurses are great . Always there to listen when I’m worried

So glad to have all you lot on this site ... .

[Wyebird]

Thank you . I loved reading the article. I wonder whatMPN Voice clinicians would think of it. It surely has a place in the world if heamototology.

[Aneliv9]

I don't believe that she CURED her mother's ET with homeopathy just because her platelets begun to fall. It may treat her like other drugs but not cure

[Mostew in reply to Aneliv9]

Ps

I like to have a ‘skeptical open mind ) !!

[LRH1977]

That is such an interesting read, thank you for sharing it.

I've used homeopathy throughout my life - my mum first took me to see a homeopath age 7 when I had glandular fever and my GP had told her I'd be ill for months. Whatever the homeopath gave me was so effective that within a couple of weeks I was well. My mum took me back to the GP who was astounded at the results! I did see a homeopath when I first got diagnosed with ET, but she knew nothing about it and didn't appear to be interested in finding anything out, so I didn't continue to see her. This article gives me new hope.

P.S I like your 'skeptical open mind' approach, always good to be open to new possibilities!

[Mostew in reply to LRH1977]

Glad you enjoyed it .

So hard to find a good homeopath .

I’ve just emailed someone and waiting to see what she says .

No word back from the one I saw for years . But I know she is working as medic on front line so is very busy

Her replacement at homeopathic charity clinic ( a DR as well as homeopath). Sat there looking at

Computer typing whilst I talked . !!!! I asked him not to so he wrote notes constantly instead !!

I didn’t return ...

Hope you are managing to keep reasonably ok

[LRH1977 in reply to Mostew]

Wow, so rude when people do that! I'm not surprised you stopped seeing him. Like you say, very hard to find a good homeopath, the one I saw throughout my pregnancy with my son (and I believe she saved my pregnancy) I moved away from years ago, but she was brilliant...got me thinking now!

Yes, I'm good, returned to work on the 'front line' (I'm a nurse in a community hospital) and it's not as bad as I thought. Just the mask wearing all day is pretty unbearable, especially in this heat, but it's great to have some semblance of normality again...for now...

Hope all's well with you

[Mostew in reply to LRH1977]

To be honest I think he just thought he was being efficient !!

He was very keen and not experienced ....

glad you are back at work ..

I’ve worked part time throughout it all ..

yes it’s good not to get complacent And keep trying to be ‘inspired’ that we can at least not get worse ..., X

[Mostew in reply to LRH1977]

Just reading your previous posts . Don’t know why I missed them .

I was vegetarian from 13 then started eating fish about 15 years ago . I’m 64 .

I was recommended the Paleo diet which I really don’t ‘connect’ with but started eating organic chicken . Like the things I make but would rather not eat it .

It seems to agree with me though .

Anti inflammatory foods are helpful .

X

[LRH1977 in reply to Mostew]

Thanks you, I think it's so important to eat what agrees with you! I stopped eating wheat a few months ago and it seems to have improved my histamine response hugely. My skin was terrible around my mouth and has completely cleared now. Also gone organic on the fruit and veg (and grow a lot myself on my allotment!)

I eat a little fish, generally just 'listen' to what my body needs and feeling pretty well at present. Even taken up running properly after dabbling for years!

[Mostew]

Great you running . Must be feeling good ...