Anyone with ET from California?

[MaryELWoods]

I'd love to find people near me and hear who their doctors are.

[mhos61]

Hi Mary,

there is someone who posts on here called 'jerrymohler.' I think he may live in California. Try and look up his user name and private message him.

God Luck

Mary x

[MaryELWoods in reply to mhos61]

Thanks!

[Andyls]

There is a very active US community. You can get more info at mpninfo.org/. From there, you can learn how to access the online support group. The site also provides info about mpns, conferences, clinical trials and much more. The listserv moderators can also give you info about specialists near you.

[MaryELWoods in reply to Andyls]

Thanks!!

[mickey64]

Mary I left you a message in another post, there are many facebook forums with people from the US. Please check them out. Try searching Essential Thrombocymia (LOL know I spelled that wrong). I know many that are your area. Good luck.

[gemneye]

Hi MaryElWoods

live in California in the bay area

if you could get back to me or I will

I have essential thrombocytopenia for about 12 years now

Of lately I've been exhausted just a few to mention

I go tomorrow to my oncologist and hopefully we can connect and I can let you know my doctor and the past doctor along with other things an vice versa

🦋 Yvette

[MaryELWoods in reply to gemneye]

Yay! Someone near me! Yvette, let's connect.

[goodluckjoe in reply to gemneye]

Hi, came upon your post today. Are you still in the Bay Area? Please let me know. I have ET and MDS and have a pretty good doctor. All the best, jen

[gemneye in reply to goodluckjoe]

Hello

I am near it ….. awesome for you to let me know that you have a good doctor. Mine is very questionable these days…you came at the right time letting me know about your dr

please send the name and phone number

a big thank you

Yvette

[goodluckjoe in reply to gemneye]

Hi Yvette, my oncologist is Dr. Rajesh Behl, He is at the Comprehensive Cancer Center, 2001 Dwight Way, Berkeley. 510-204-1591. He is very busy and hopefully he is taking new patients. I have a very rare "double-whammy" with ET and MDS . Have also had a second opinion with Dr. Peter Greenberg (via Zoom) at Stanford. He is semi-retired but does consulting and he has agreed with my treatment by Dr. Behl.

Where are you located? And are you a fellow Gemini? (per your user name).

Please keep me posted and stay safe, jen

[gemneye in reply to goodluckjoe]

hi Gen

Sorry for the lapse in responding

I got sick 😷

thank you ever so much for all the info on the doctor. I think it’s a little far for me though darn I am over here in Los Banos. Just moved here a year ago and it’s a interesting place I like it. I am a true Gemini.

you were very fortunate to find the doctor and then one at Stanford. I wonder if he would do a video call with me

my oncologist is not good for me

you have double whammy

hugs hugs hugs

I am glad you found me. it’s always good to talk to another person who has what we have

a lot of people….Don’t understand a lot of times ,they see me and think I’m OK but I’m not. I’m screaming inside actually if that makes sense.

I hope I made sense

Hope you are doing good and hope to hear from you soon 😊

Sending strength

Yvette

[goodluckjoe in reply to gemneye]

Hi Yvette,

Hope you are feeling much better today! Hunter 5582 is a great source of information. If Berkeley is too far away, check out the list of MPN specialists below:

mpnforum.com/list-hem./ Scroll down to USA --CA.

I contacted Dr. Jason Gotlib at Stanford first, and was then told that Dr. Greenberg was the specialist for MDS. OK. Maybe you can get a Zoom meeting with Dr. Gotlib.?

As Hunter 5582 insists (and rightly so), we must advocate for our rights and appropriate care. Passive patients do not receive the best care.

I hope you can see an MPN specialist very soon!

I am a real Gemini too (end of May). That's why your user name really stood out!

If you wish to communicate in more detail, let me know. Health Unlocked frowns upon phone #s in our messages, but there are ways...

Please keep me posted on your progress. It would be great to know someone locally who really understands.

Take care and stay safe, jen (Alameda)

[hunter5582]

Not from California but you can look up MPN docs on these two sites.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...