Hi @Chris1 - just read you post. I have just been diagnosed with Essential thrombocythemia (ET) just getting used to the Hydroxycarbamide. Where do you live? I live in a remote village in Argyll, I’m under the Vale of Leven Hospital in Alexandria and we ofter get cut off with landslides etc. I was told by my consultant that fatigue was not a sympton. I went to my GP with extreme fatigue and that’s what started this journey. I have many other auto immune illnesses as well and the consultant thought it was them that was casuing it. I’m still very tired but am getting used to the medication now.
I’m glad to hear about your new referral and do hope that you get an appointment soon.
I can see you’ve had lots of excellent comments here to support your initial post and reassure you. I wanted to also share Blood Cancer UK’s information about Essential thrombocythemia (ET) here in case you or anyone else affected haven’t already seen it. It has recently been updated and has some useful tips for looking after yourself: Essential thrombocythaemia | Blood Cancer UK
Hope this helps. If we can be of any further support, please don’t hesitate to get in touch - as Erica says, we are also on email support@bloodcancer.org.uk.
Hi @LynnB . Welcome to the forum. I have found this site to be very helpful over the past couple of years since I was diagnosed. I have Essential thrombocythemia (ET) with Jak2 and MPL mutations. They did try me on hydroxycarbamide at the beginning, but I had a severe reaction to it so was taken off. I take aspirin as a blood thinner and that seems to work so far. I have a friend who lives in Bute, so probably not far from you. I’m on the south coast of England. A lot of the consultants don’t seem to know anything about the symptoms of blood cancers, that is why I have asked for a transfer to a university hospital where there are specialists in my type of cancer. Still waiting to hear at the moment. Like you I also have other health issues which affects my immune system and causes allergies and other problems. I hope you are getting on well with the hydroxycarbamide. I’m sure you will learn more about the Essential thrombocythemia (ET) as time goes on and learn how to best manage it. My worst symptoms are fatigue and itching, but my GP has recently given me a special cream to use instead of soap, and that seems to be giving me some relief. When the fatigue hits, I go to bed and sleep for a few hours. I’m lucky enough to be retired now, so I can do that. Hope you are feeling well at the moment. Take care. Best wishes from Chris.
Thank you @Ali_BloodCancerUK . I haven’t looked at the Essential thrombocythemia (ET) information for a couple of years, so if it has been updated then I will have another look. I’m still waiting for my referral appointment so hopefully I won’t have to wait too much longer. Best wishes from Chris.
Hi @Chris1 I’ve been told I have Essential thrombocythemia (ET) and the gene that is affected is CALR if that means anything to you or anyone! I thought the nausea had gone bt feeling quite yucky today and have spent most of the morning in the loo!! I know I am my own worst enemy when it comes to resting, my husband is always telling me I’ve done enough and to rest. We are off to Spain in 2 weeks and I am hopeing that some warm weather will make me feel better. We have had a summer of rain and cold weather, it’s 11c today. I haven’t had the itchy skin yet. I have never used soap, I use Simple Face Wash, and I don’t shower every day, I was advised by a Dermatologist years ago not to. Yes I know Bute, takes us a bit to get there, have to get a ferry, which doesn’t always run. Take care and all the best to you x
Hi @LynnB . The exon 9, calreticulin, ( CALR) is one of the Myeloproliferative neoplasms (MPN) gene mutations that defines Essential thrombocythemia (ET) or Myelofibrosis. Some people have just one mutation and others may have more than one. They are acquired genetic mutations, meaning that you are not born with them, and the scientific evidence thus far means that it isn’t passed on to children. Sorry to hear that you are suffering nausea from the hydroxycarbamide treatment. I know how nasty that is. I hope you feel better before you go on your holiday to Spain. What insurance company did you get cover for your holiday with the Essential thrombocythemia (ET). I looked into it a while ago and it was horrendously expensive. We have only had holidays in this country since my diagnosis, but I know others on here that got reasonable quotes from a couple of companies that I didn’t try. Anyway, I hope you have a wonderful holiday with lots of sunshine. Take care. Best wishes from Chris.
Hi @Chris1 - thanks for all the info, still trying to get my head around everythng. Thankfully the nausea has eased a lot. I am back seeing the consultant next Wednesday, have got three appointments at the hospital next week 2 in one day, think I’m going to apply for a loyalty card We are with StaySure, my husband phoned them when we got the diagnosis and was pleasantly surprised when it was only £23.90 extra, then he remembered we only had 69 days left of the policy! We have holidays booked to Madeira at the end of November for 2 weeks and again end of February for 2 weeks. Out policy expires in October, so we will see then! Eeek! We may just do single trip covers, we have afeeling that our February trip will be our last trip abroad. We will miss our winter sun break. My husband sufferes from SAD so really helped him. We have been going to Madeira in the winter for many many years and will really miss the country and the people. But never say never. Stay well and thank you x
@Erica Hi just an update. Saw the consultant yesterday and my platlets are down to 480 she was very pleased. Staying on the same dose for the next four weeks and if it’s going the right way still she may up the dose to maybe one or two extra a week and it will be a 3 monthly visit not a 4 week one, which is great for us as it’s a 2 hour round trip drive. Downside was medication not available until today as it has to go through the main cancer hospital in Glasgow first for them to send the medication through to my hospital! So that was going to be another 2 hour round trip today. But, as luck would have it, my friend has an appointment at the hospital and is collecting it for me. Phew. Now to get ready for my holiday. Hope all are well. x
That is good news @LynnB . I hope you continue to keep your platelets down and do well on your medication. Have a wonderful holiday. Best wishes from Chris
Oh, thanks so much for the update @LynnB, good news about your platelets and the fact that you happen to have a friend that could pick up your meds for you.
Yes, now concentrate on getting ready for your holiday, enjoy and we look forward to hearing from you when you get back
Hi @Jilly20 . I have now got my appointment to see the haematology consultant at SGH, but unfortunately Dr Duncombe has recently retired, so they have given me his replacement who has recently become a consultant. I just hope that she is knowledgeable about the symptoms of Myeloproliferative neoplasms (MPN)’s and Essential thrombocythemia (ET). My GP seems hopeful, so I will keep a positive outlook and see what happens. I hope you are feeling well at the moment. Take good care of yourself. Best wishes from Chris.
Thank you so much for this information- I’m not far from Southampton. Fascinated if there are any help groups in this area. I’m early diagnosis so trying to find the best options for Myeloproliferative neoplasms (MPN) specialists. Yes, and fatigue is very prominent!
Ah glad you have now got your appointment set up @Chris1 - there are lots of Myeloproliferative neoplasms (MPN) patients that attend the haem oncology dept at SGH so I am sure whoever you see will be of assistance and experience to assist you - let us know how you get on
Glad any info has been helpful @Driftwood - certainly Southampton General is a good hospital if you are looking for a good team that deal with MPNs. I am not aware of any help groups locally though - in the past I have attended in person forums held by Myeloproliferative neoplasms (MPN) Voice that were very helpful and supportive it’s worth keeping an eye on their website for any coming up and some are held online via zoom too for specific subjects (there was a good one re skin protection last week that was excellent) - they used to have a yearly in person forum in Southampton or Bournemouth that I used to go to but not seen any down south in the last couple of years but that may come up again.
We were just about to suggest Myeloproliferative neoplasms (MPN) voice also as @Jilly20 has kindly done so - it’s good to hear that you have attended some useful forums with them, Jilly20. Here is the link to more info on these - Patients forums – MPN Voice it doesn’t look like there are any set up in the south at the moment, but you can sign up to receive information when they are. They also have a buddy system for peer support, which may be of interest: Buddy Programme – MPN Voice
We believe Leukaemia Care also run Myeloproliferative neoplasms (MPN) support groups - you need to sign up to be able to see the listed groups: Leukaemia Care Support Groups - Leukaemia Care
Thanks @Jilly20 . That sounds very positive that I will be in good hands. As I said, my GP felt quite positive about it, and I am sure that the care will be much better than what I have received from my local hospital to date. I just hope that the red jet will be running on the day of my appointment. Fingers crossed .
Yes I forgot to mention the support group with Leukaemia Care - especially as I have just been on the online support group with them this afternoon I should have remembered there are online support groups for all the individual MPNs that they run very supportive usually every couple of months
We are with StaySure, my husband phoned them when we got the diagnosis and was pleasantly surprised when it was only £23.90 extra, then he remembered we only had 69 days left of the policy! We have holidays booked to Madeira at the end of November for 2 weeks and again end of February for 2 weeks. Out policy expires in October, so we will see then! Eeek! We may just do single trip covers, we have afeeling that our February trip will be our last trip abroad. We will miss our winter sun break. My husband sufferes from SAD so really helped him. We have been going to Madeira in the winter for many many years and will really miss the country and the people. But never say never. Stay well and thank you x
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there are online support groups for all the individual MPNs that they run very supportive usually every couple of months