ET, CALR Mutation

Hi Staying positive and welcome to this corner of the Community……. I am Mike and I help out around our blood cancer groups.

I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Group Title’ and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups m, the one at our local centre has a few folks with ET so worth checking.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

Hi, I  too have  ET , but  have jak2 positive essential thrombocythemia not  clar according  to my haematologist  it is a rare form  of blood  cancer, not curable  but controllable. I too am on hydroxycarbomide and aspirin  to thin my blood. If I  was you  and feel  uncomfortable  with  your  diagnosis  I  would  ask to see a heamotologist that  specialises  in blood  cancer to put  your  mind  at rest. Best of luck  to you  with  your diagnosis  and hope  you  get  answers. I've  been  on this  medication  for  6 years  and  now  been  diagnosed  with  MS which they think maybe  caused by the  medication  but there's  no proof.hope they  can  put your mind at rest because  I  think  the not  knowing  what  is  going  on is worst than  the  original  diagnosis.  Best of luck to you my friend  ..

Hello,

I was diagnosed with Myelofibrosis four years ago. Until a few months ago I was in “watch and wait” but now take Ruxolitinib which in the US is sold as Jakafi. It has helped me a lot with fatigue and spleen reduction and so far my blood numbers are holding. What I have learned by seeking information is that everyone is different. MF is a progressive cancer of the blood. In many, as myself it is a slow progression . The only cure is s Stem cell Transplant. You are young and could be cured. There is a MPN specialist at Guys hospital. Be proactive get as much information as you can find. I’m am 83 and did not qualify for a SCT, but I urge you to look into it. 

naugus.

Hi.  Thank you so much for responding. 

I am so sorry to hear about your MS diagnoses too.  It can't be easy dealing with both conditions.  

I am still trying to get my head around it all and appreciate you taking the time to read and respond to my message.

Take care.

Christine

Hi.  Thank you so much for responding.

I am still trying to get my head around it all and appreciate you taking the time to read and respond to my message.

it's great to hear that the medication helped you with fatigue as that is my main problem.  

Thanks also for your suggestion re specialist and SCT.  I will check this out.

Take care.

Christine

It's  hard  to get  your  head  around  it sometimes, you'll  have  bad  days  and good  days.  The why me days, just  do what  feels  right  for  you.  If you  need  to rest , rest. I'm  still  working  but reduced my hours  to part time.  The mind is willing  but the body  isn't  unfortunately.  I've  been  very  lucky  my employer  is very  understanding.  Take  care  of yourself. Best of luck  to you. I hope you  will  feel  better  in yourself  soon x

Hi, I'm new to this forum but have been an occasionally active "poster" on the Blood Cancer UK Forum.

I'm a 59 y/o male, still in full-time employment (just!) and living alone, but well supported by my 4 daughters who live between 15 and 30 miles away.

I too have ET with the CALR mutation and have been on Pegasys Injections since my diagnosis back in March 2018. This followed on from my September 2017 Heart Attack. It has been a difficult journey at times but the team at Leicester Royal Infirmary have been looking after me since the beginning of this dance. And it is a dance, I just wish I was more rhythmical! 

I've had a few issues with work; I am a lorry driver/HIAB operator for a National builders merchant but, with the assistance of Occupational Health, I have managed to stop my hours from being increased (difficult to believe in this day and age, I know) although still manage to do more than my hours most weeks.

Fatigue is my biggest side effect, but how much of that is due to the ET, the Pegasys, my age (yikes, 60 next year!), my comorbidities, or a combination of all of those, nobody can say for sure.

The best advice I can offer is to take one day at a time, take care of yourself, remember to be kind to yourself, and to keep notes of any questions that arise between appointments. My memory isn't what it once was, but I blame that on my fatigue.

Thank you for reading.

Jimbo165 

Thank you very much for taking the time to respond and share your experience.  I love your description re the dance and will be adopting this ...made me laugh.

I appreciate your advice.  

Hi, I feel timid about responding to your question as I OK am absolutely new to all of this. I have chromosome 5q deletion MDS and thrombocytopenia and  if it was.me, I would seek a hematologist as your doctor does know that MDS IS a cancer. It used to be thought of as a disorder but they decided it ticked all the boxes for cancer. I would not be confident in someone who does  not know this. I feel like I am butting in but I feel very strongly about this for some reason. There is my 2 cents. Good luck. 

Hi.  you are def not butting in.  Thank you for taking the time to respond its much appreciated.