Oxford Forum: I won’t be doing the patient experience talk

[Rachelthepotter]

Hi

So it seems that I’m not going to be asked to gve the patient experience talk for the Oxford forum. Its a pity, I’d have liked to do it, but there it is. So I can just be in the audience with my husband and son, and enjoy the evening. I’m looking forward to meeting the other people there, and to hearng the ET patient experience talk. More relevant I was told.

Maz emailed me today, and I’m disappointed, but it’s going to be a great evening. I’ll be in the MF breakout group, and I’ll also be staying overnight at the venue after the forum, so there should be plenty of time around the formal sessions to catch up.

Thank you all for your encouraging messages.

All the best

Rachel( MF, on rux and EPO and the odd transfusion. Diagnosed 2017)

[mhos61]

Sorry to hear this Rachel, I know how much it would have meant to you. Maybe the next time!

Hope you manage to enjoy the event regardless.

Mary x

[champ30]

That's a Shame Rachel,I know you wanted to speak.We are in the minority compared to ET patients.

Probably that's why you weren't chosen.

Hope you enjoy the forum.

Regards Lynn.

[Stevesmum42]

Hi Rachel. I'm sorry the you aren't able to share your journey with the forum , but you do share your experiences with us all on these pages , thank you for doing so, you are always informative

.....I can understand their tight time schedule as having attended the all day Forums the schedule is pretty tight and it's a full day. So compacting everything into a shorter time must be quite challenging. I would love to attend, but as I live in Devon , I will wait until a full day forum is arranged and book into that,

Personally I would be very happy to wear my online name on a badge , so I know who I have been online chatting to over the years be so good to put a face to these names.

I'm waffling now. Have a great informative evening enjoy meeting our lovely fellow MPNs

Perhaps next time you can have the platform for a while.

All the best Sandy x

[Tico in reply to Stevesmum42]

What a beautiful reply sandy and if i could have liked your reply an hundred over i would have,Rachel is very informative and she certaintly brings a lot to the forum and i hope she do's not let it spoil her day with her husband and son.tina.x🤗

[Bluetop]

What a shame. I know you were keen to do it. I'm sure you will have an opportunity to share your experiences with the MF group. But I would like to thank you for sharing your experiences on this forum -and also for the support you provide. I hope to meet you in Oxford.

[Tico]

So sorry rachel,I echo sandy's reply to you. Huge hugs.tina.x🤗

[Osteomyelio]

Rachel, did you get any infections or have any problems with rux? Please tell me more about EPO and how you are doing on it. Thank you

[Rachelthepotter in reply to Osteomyelio]

No infections with rux, but it did ( and does) knock my hgb down.

Rachel

[Osteomyelio in reply to Rachelthepotter]

Did your hemoglobin eventually go back up?

How long have you been on Rux

[Rachelthepotter in reply to Osteomyelio]

I've been on rux for nearly 2 yrs now. The lowest my hgb went was about 92, and it is supposed to go back up (to nearly its previous level ) of own accord. Mine didn't, so I was given EPO to inject. which has helped to maintain the levels at around 110. But when they drop below that I feel awful, and the only thing that helps is a blood transfusion.

My rux dose was increased to 20mg twice a day (from the more usual 15 mg twice a day) in December last year - and I'm due for a review with all the current results and tests to see where I'm going.

Unfortunately even when my blood counts look OK, I can feel terrible -tired, brain fogged, the lot.

[Osteomyelio in reply to Rachelthepotter]

I do understand all too well. What are your inner thought on the

rux? I plan on talking to my oncologist about EPO. What is it like being on the EPO? Thank you

[Rachelthepotter in reply to Osteomyelio]

The EPO is fine -no symptoms, and the self injecting isn't hard. I'm now on a once a month formulation. HOWEVER what it does is boost my hgb - but because I have MF the new red blood cells don't function very well. The team won't give me a transfusion when my HGb is over a certain limit -but I can still feel awful at that level. It is something I want to get sorted out next time I see the consultant.

It was clear to me that rux is the BAT for MF: I too asked around in the forum before I took it, and got a unanimous -if you can get it, go for it.

I hope this helps.

Rachel

[Helena303]

I’m going so can’t wait to meet everyone.

[JediReject]

Hey Rachel , , I too am sorry you aren't sharing your MF experience with the Forum, , I'm sure you'd have given a highly relevant and thought provoking insight into what life is like living and dealing with your MPN.

It could partly be due to the numbers game in that whilst MF has symptom commonality, drug treatment crossover etc it is still the rarer (thankfully! ) of the MPNs although as we know the others can transform over time so most of your experience will have direct relevance to all. As I have mentioned I have never spoken directly with anybody else with MF in 13 years of clinics.

I do hope you secure the chance to speak at a future Forum.

Enjoy the day with your family.

Regards - Chris

[Rachelthepotter in reply to JediReject]

Thanks Chris: I’ll enjoy it anyway, and I appreciate tha5 MF is much less common than the other MPNs

Rachel

[liarose]

I don't know if its possible to see a copy of what you would have said as I would be very interested..( I wont be going to the forum though)

Barbara x

[Rachelthepotter in reply to liarose]

Hi Barbara

Thank you for your interest:

I’ll think about doing something in wtiting - if I do, I’ll post it here.

R

[liarose in reply to Rachelthepotter]

It would be really interesting if you can find time to do it.

[tessa46]

Hi Rachel, I’m sorry to hear you are not doing the Patient Experience talk at the Oxford Forum, I was looking forward to hearing more of your story. However I very much hope we can connect on the day and have a chat. I have ET JAK2, so will not be in the same group as you. So will text on the day.

[Rachelthepotter in reply to tessa46]

Great : I’m hopng Maz can arrange a meeting point at the venue.

R

[socrates_8]

Hey Rachel...

Firstly, sorry to learn of your latest news, and your not being able to provide a speech. It raises so many questions for me personally, as to why such a decision might have been given... (?)

In any event, I am sorry Rachel, as I know you were so looking forward to doing your best to share your own invaluable experiences with others...

I might have a useful alternate to offer you shortly, and I shall send you a PM to explain further...

Best wishes

Steve

[Hidden]

Hi,

There was always lots of opportunity for people to tell their interesting stories in the breakout groups. Perhaps you can use it as a practice.

As an MF sufferer since 2007 and recovering from a stem cell transplant since Nov 2018 my advice is don't talk about travel insurance, head aches or mention PV or ET!

The experience I have had of MF has not been too bad though I know now I am not out of the woods yet.

I wish there was an MPN Voice / MF group on Health Unlocked.

Be happy!

Martin

[Rachelthepotter in reply to Hidden]

Thanks, Martin. I'll enjoy the MF breakout group, and swap stories.

Was the stem cell transplant worth while? Decent quality of life now?

[Joybard]

Sorry to hear about your disappointment. I know what it feels like. I have been in the same position. However, I had actually spent the best part of a weekend preparing a power point presentation. Hope you enjoy your day