At last, after a bit more red tape
Hi @Gary, I just saw your post and wondered if you needed any support? Looks like you have lots of information there but if you do need to discuss anything please do contact the Support Services Team Blood cancer information and support by phone and email | Blood Cancer UK Take care Gemma
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Thanks Gemma. I’ll bare that in mind. The support I have been getting from the NHS has so far been brilliant. I have just finished 6 weeks of counselling with the Firefighters Charity. The biggest struggle I’m finding is because this disease is so rare and nearly every Medical professional we speak to has never heard of it. I’m just glad that the fight back has started.
Take care and have a Happy Christmas and hopefully we’ll all have a better 2022.
Gary
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Hi @Gary great to hear from you again and it is so difficult when you have such a rare blood cancer.
I am glad you have had your 6 weeks of counselling and yes, the fight back has really started,
Please keep posting and letting us know how you are doing.
A happy Christmas and better 2022 to you too.
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Hello Nicola, thanks for asking. I had a bad day yesterday. I don’t know if some of the side effects from the the meds are starting to kick in now, but if not it does feel like it’s a bit of a set back as we tend to put all hope into the medication. Early to bed last night, up today feeling like I’d been partying 'til 4 am!!!
The ECD Global Alliance now showing 750 confirmed WORLDWIDE, and 41 UK. Nearly enough for a coach trip 
Hope you’re well, and hopefully a better year for everyone 
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Morning @Gary. The side effects must be frustrating. Are they listed as side effects of the medication?
Definitely enough for a coach trip! Have you managed to make contact with any of them?
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Morning Nichola, one of the side effects is fatigue, along with others. I’ve connected with a few. We are a very select group!
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Oh @gary, those side effects do sound debilitating.
I think being part of a very select group of like people is very special.
Take care and be kind to yourself you and your body are going through a lot emotionally, physically and practically.
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Hi @Gary great to see you here. Sounds like you’ve got this covered, you seem very positive. The side effects won’t be forever. Great that you’ve found the other 40 and of course everyone on here is always available for support when needed. Let us know how you get on.
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Hi @Gary I hope you don’t mind me commenting on this post, is it possible to contact you please ? A family member has just had this diagnosis and would like to chat with someone who has also been given the same diagnosis.
I hope this is ok.
Kind regards x
Abbey
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Hello Abbey, yes of course it is.
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Thankyou @Gary I appreciate that. We have just had the diagnosis of erdhium Chester ( sorry if I miss pronounced or miss spelt it ) I was wondering if I could possibly speak to you about first steps, and information and help and support networks:) and most of all how are you ? It just hasn’t sunk in and with it being so rare, there isn’t much information out there
Thanks again:)
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No problem Abbey. I’d be more than happy to speak. It’ll be the first time for me as well. Have you joined ECDGA? There’s also a group on Facebook. A diagnosis now is better than 20 years ago, but it affects everyone differently.
I was diagnosed April 21, and I still don’t think that I’ve fully accepted the diagnosis yet.
I’m ok at the moment, but get ready for the roller coaster! When I’m feeling ok, it feels like nothing is wrong, but when I’m rough it’s a reminder that I’m not. My biggest battle is side effects from the medication.
Ask anything, and I’ll try to answer.
Take care,
Gary
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@Gary Thankyou Gary, as a family we are so shocked at how rare this is and that we cannot find a huge amount of information regarding treatment and next steps. We are just waiting to hear back from the doctor regarding a plan. As we aren’t sure what treatment is used to help this diagnosis.
I appreciate you talking to me
Abbey 
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Hello Abbey, It definitely is a shock. I thought that I was bullet proof! Have you been in touch with Professor Collin at Newcastle Hospital? He’s a Professor in Haematology and specialises in ECD. He’s my lead consultant, but I collect my medication from Cheltenham Hospital, Gloucestershire. Do you know if your family member is BRAF+? I am, I started taking Dabrafenib and Trametinib daily 2 years ago. It definitely saved me.
Luckily there’s not alot of rubbish on the Internet as it’s so rare, but can be out of date.
I hope this helps. What part of the country are you in?
Cheers Gary
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Hi @Gary
Thankyou for getting back to me, the diagnoses was only made today so I’m unsure about the BRAF but this is something I will ask my family about. We are in Merseyside.
I’m glad to hear you’re doing well, I did read about the Newcastle specialists on the list from the hospital. I’m sure we will know more as soon as we get the appointments and hopefully that will be pretty soon.
Please stay in touch, wishing you well.
Abbey
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Hi Abbey, When I was in hospital last (kidney stones) the consultant did say that sometimes it’s better to have a rare diagnosis because we’re kept a closer eye on. I can’t fault the treatment I’ve received. I hope this makes feel a bit more reassured. The biggest battle is getting diagnosed, then you can plan a bit.
Oncology appointment tomorrow. ECG and PET scan results.
Definitely stay in touch,
All the best,
Gary
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Hi @Abs555 a great big welcome to our forum and it really comes through your care and anxiety.
Good to hear from you again @Gary .
You have both seen the value of our on line forum, and that is why it is on line because you might also help others, as you have been helped.
Be aware anyone can read our posts and that is why we don’t post any personal details.
If you would like to speak to someone the Blood Cancer Support line is there for you on 0808 2080 888.
@Abs555 perhaps all of you just take some time to come to terms with the diagnosis, be very kind to yourselves, perhaps you might all deal with it differently, there is no right or wrong way.
Yes, I have found it an emotional, physical , psychological and practical roller coaster and there is a lot of waiting around.
Look after yourselves and please do keep posting as I look forward to hearing more from you.
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