In April this year, my son was finally admitted to hospital in a critical condition and immense pain. After months, and in truth looking back, it was years, of going backwards and forwards to GPs with various symptoms, it’s now clear that the cause of these was his blood and extensive abdominal clotting. He was in Hospital for ten days, three in critical care, and we are very lucky to still have him with us. It was certainly a period when we seemed to exist within our own, family, bubble and we were unaware of anything else. The Hospital staff were completely wonderful throughout this period and I cannot praise them highly enough.
During his hospital stay he had copious amounts of blood taken to try and pinpoint the cause of his extreme symptoms; it was initially thought he might have liver or pancreatic cancer. About four weeks after discharge from hospital, and on my birthday in May, he finally had a diagnosis of MPN cancer. It is a day I will never forget. Although the haematologist couldn’t definitively say which version my son has, she seemed to think it was most likely PV. He still needs to have a bone marrow biopsy to confirm whether this is actually the case.
For several months his blood numbers have improved significantly and during this period he has been transitioned onto Warfarin and Aspirin.
At last week’s haematology clinic he was told that some of his numbers have started to rise again, so they’d test him in November and, if that trend has continued, they will start him on Hydroxycarbamide. So at this point, I certainly think it’s time for a definitive answer as to whether it is actually PV or ET that he has.
Throughout this period we have sought, and been deluged with, huge amounts of information that is very new to us, and takes time to get your head around. I’m very aware that if I’m going to help and support my son, as I’d want to, I really need to understand the condition, his experience and his options. The most obvious place to do this is where people share similar experiences, advice, knowledge and sympathy.
Many thanks for listening to a worried mum.
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twinkletoes01
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Sorry to hear about your son. It was a long post but I have a few questions. How old is your son and how high are his platelets? Once he starts on his new treatments, he should start feeling better. MPNs are tricky because sometimes the medications can exacerbate your fatigue and other symptoms. Please make sure he discusses all of his side effects with the doctors. I’ve had to readjust my medications several times over the years. I hope things get better soon for you and your family.
My son is 42 years old and, at present, all I can tell you is that his platelet count is climbing again. He almost didn’t need to be told by the haematologist, he was aware of the return of symptoms such as tingling and burning sensations in hands and feet...he just felt different. The thought of Hydroxycarbamide is slightly daunting, it seems to work wonderfully for some and be very problematic for others.
What an awful time your son has been through. I was diagnosed about 4 years ago with ET but had been suffering symptoms for several years before that .....there are various drug options depending on his diagnosis but do take heart that with the right treatment which sometimes takes a little time to get right many people on here are living with this condition and are having a quality of life . There are some that have had ET for many years. 20 and still counting .... We all react to treatments and drugs differently. I am on hydroxycarbamide and suffer fatigue. But no other symptoms Maz the administrater is amazing and can help you to get a buddy with the same condition to talk to and Maz can offer lots of advice .regarding literature etc ..... You can ask to see a MPN specialist if you haven't seen one already. I've never seen one as I'm happy with my heamo for now ..I do hope you your son will be feeling better soon and you will have lots of support on here best wishes. Pippa
Thanks for the reassuring response Pippa63, it’s good to know that there are so many out there who cope OK other the medication. His Haematologist is very good and we’re all very happy with her, but given his age and presentation, which was really aggressive, I do wonder if being seen by an MPN specialist might be a good thing. Many thanks
If I’ve realised anything over the last few days, it’s that he really needs to see a specialist. It’s a thread running through so many of the responses I’ve had.
Hi, sorry to hear of your sons illness. There is a lot of great support on this forum and also on mpnvoice.org.uk. You can trust the information on both of these sites as they are monitored by Maz and her team.
One thing that should be a comfort to you all, is that there are a lot of people on this forum who have had PV or ET for years and are still alive and kicking. As long as the conditions are monitored and treated as and when necessary, then a normal life span is usually expected.
However they are rarer illnesses so it is important that he does see an MPN specialist. If you stay in the uk the MPN Voice team organise forums up and down the country which if you can, you should go to as a family. After the initial part of the forum, people split up into groups according to their MPN but there is also a family group where experiences of coping with loved ones and their MPNs can be shared and support given. They are the most uplifting occasions so if you can, please go. Details can be found on mpnvoice.org.uk.
You are all going through the hard part of your journey just now; when you don’t know 100% what’s wrong, when your son is enduring tests and you’re all waiting for the results. I promise it will get easier. Keep in touch, kindest regards Aime xx😻
Happy to listen at any time, know how hard it is for family as well as the patient. There are a lot of lovely people on this forum who are always there for me when I need them and they’ll be there for you too. Kindest regards and E hugs Aime xx😻
Hi: I'm sorry to hear about your son and have great sympathy for all that you've gone through. I want to also recommend that you find an MPN specialist; I have ET, was diagnosed a few years ago and have had some health encounters over the summer that have made it clear how little is known about MPN's by the general population of doctors, however well meaning.
Please come back and count on the people here for information, sympathy and support. We all know how hard this can be. Best of luck to you and your family.
Many thanks for your kind reply and advice, Kim, it is very much appreciated. We are going to push for my son to go somewhere with an MPN specialism, as he’s quite keen to know if any other non-driver genes are having an impact. So I do increasingly think that an appointment with a specialist is badly needed.
I’m so sorry to hear how your sons diagnosis came to light. This must have been a traumatic time for you all. As a Mum, I can relate to how you must be feeling.
I definitely agree with getting a second opinion from an MPN Specialist. If you live near London, there’s Claire Harrison, at Guy’s and St Thomas. Also, Tim Somervaille at the Christie, Manchester.
At 42, your son is young. If he has to start treatment, I would push for Pegasys.
Have you taken a look at MPN Voice (UK) and Patient Power (USA). These are great places to educate yourself on MPNs, along with this wonderful forum of course.
Many thanks for your kindness, Mary. There are some wonderful little nuggets of information in your response; Claire Harrison is a name that I’ve heard, but I was completely unaware of Tim Somervaille, Manchester may be an option and worth investigation.
Hello, I just wanted to let you know that there is also a new specialist at Manchester royal infirmary, dr Rachel brown. I was very impressed with her.
Hello, many thanks for the heads up re Manchester, rebeccaxxx, you’re not the first to mention it. You’ve given us a different name to conjure with, though. We know that my son’s haematologist is actively seeking a specialist referral for him. She has spoken to him on the phone, and she should have some news for him at his next clinic, which is in November. Things are certainly moving...
It sounds like she is looking for a specialist who will have experience in a case like his then, which can only be a good thing. I’ll be interested to hear the outcome.
I’ll make sure that I post, once we know exactly what is happening and when. I’m hoping that the specialist, working in conjunction with the haematologist, will provide him with the most appropriate treatment for him. Keep your fingers crossed for him...
That is a tough situation. Sorry to hear your son is having such a tough go at whatever form of MPN he has. I was diagnosed with ET over 30 years ago. The ET progressed to PV about 6 years ago. My old hematologist missed the progression and did not initiate the correct treatment. Fortunately I did not suffer any significant issues as a result. He was a good hematologist/oncologist, but just did not have the level of expertise needed to deal with a MPN.
I am on to a new plan. I have a local hematologist who has expertise in blood diseases, but is not a MPN expert. I am only his 6th MPN patient (2nd PV patient) in 20+ years of practice. I also consult with a MPN-Specialist who advises me and my regular hematologist regarding treatment for the MPN. The MPN specialist is too far away to see ongoing, but totally worth the occasional trip. I found the specialist here mpnforum.com/list-hem./ .
If your son is positive for the JAK2 mutation, as most of us with PV are, then he will also need to know what his JAK2 Mutant Allele Burden is (% of JAK2 gene mutated). They may also want to look at some of the non-driver mutations that can affect the course of the MPN (e.g. ASXL1, IDH2, SRSF2).
Since he is so highly symptomatic, I would expect that they will initiate chemotherapy for cytoreduction + a blood thinner + venesections (if PV). The venesections have really helped me a lot. They are a pain-in-the-vein - but totally worth it. Regarding the chemo - there are other options besides hydroxycarbamide. Particularly for a younger patient like him, PEGylated Interferon or Ruxolitinib might be more viable choices. ALL of these chemotherapies come with both risks and benefits. We each react to them differently.
It is really important to find a doc who has the expertise to individualize treatment for your son. The MPNs are rare disorders and many docs, even hematologists, do not have the KSAs to provide optimal treatment. Your son deserves the best treatment possible, but may have to advocate for himself to get it. Assertive patients receive higher quality care. Passive patients do not.
Hunter5582, many thanks for your reply and advice. You have pretty much confirmed the direction my own thoughts have been moving in. Like you, we don’t live near to a centre of population with an MPN expert available, but a referral to be seen by one would be v desirable. And, yes, he does deserve the best treatment possible.
Sorry to butt in on this one, but your last statement about passive patients and their care. Well I am certainly one of those.... I have a lovely haemotoligist who I am content to stay with for day to day care, but I am very concerned about a few things and can get no answers. I am worried about offending her! But I really want to see a specialist. Is it worth rocking the boat , seeing one for a one off visit ?
With a newly diagnosed son, this is all new to us and we’re on a very steep learning curve. Like you, we are very happy with my son’s haematologist, who is a lovely, knowledgable lady, with a great sense of humour. She has been, and will continue to be, our first point of contact, but she has already said to us that if we want a referral to a specialist centre, she’s quite willing to facilitate that.
I think the thing to remember is, that you don’t offend people by being politely assertive. Organise your thoughts before you go; maybe make yourself a short list of prompts. Maybe, also, take some moral support with you, if you feel the need.
Wishing you all the best in getting the outcome you need for peace of mind, and the best treatment for you.
You are not butting in - you are participating. Glad to have you in the conversation. I would encourage you to do more than seek a one-off visit. Finding a true MPN Specialist is helpful to both you and your ongoing treating hematologist. What you need is ongoing expert consultation over the course of your MPN treatment.
If you have a lovely hematologist then he/she should not be offended by your seeking consultation with a specialist. In fact, any physician who takes exception to this is likely prioritizing his/her ego over your well-being. This is not acceptable care and grounds for dismissing this sort of doc from your treatment team. It is your body and your choice about who you involve in your care. It is both your right and your responsibility to determine who belongs on your treatment team.
Here is the link again to find a patient-recommended MPN expert doc.
I hope you don’t mind if “butt in”. But I’ve felt just like you. I had the same hematologist for 11 years who I liked very much but a year ago I started to feel
worse. My red blood cells were low and I became anemic and my platelets were in the 700’s. My hematologist seemed really puzzled every time I went to see him. Because of this site, I got the courage to leave and I found an mpn specialist a little over a month ago who I love. Unfortunately, , she confirmed what I thought, that I had progressed and the only cure is a bone marrow transplant. But she is treating me for now and I’m very confident in her and so glad I made the change. So, if you have any doubts, do not worry about offending her. Do what you have to for yourself.
Oh thank you for that. I'm so so sorry about the progression of your diease, but thank goodness you did what you did! I will try my hardest to be firm with myself. 🤗
Very sorry to hear about your son. Such a shame he had to endure all these health issues before being finally diagnosed. Like others have said, I would suggest looking into Pegasys interferon as a treatment, given his age. I also have PV, diagnosed at 50, and have been on Peg for over 4 years. The results have been amazing: normal life, full time work, no side effects at the current dose, normal bloods. The key is to start at a low dose (45mcg/week ideally, and certainly no more than 90mcg/week). These days, I only have to inject 45mcg every 3 weeks. Good luck to him! x
Thank you so much, Susana7, for your kind, reassuring response. Several people have mentioned Pegasys as the preferred option, because of his age...we’ll investigate. The dosages you mention are certainly something to bear in mind and it’s interesting that your present dose is so low. We are, I think, increasingly hopeful that we can get him sorted out.
I’m so sorry to hear about your son. I can remember all to vividly how frightened I was when I was first diagnosed aged 52. You don’t say where your son lives, it’s really worth finding a haematologist that specialises in MPN’s as it is a rare condition. I travel to London and get reviewed every 3 months even though I’m now almost 12 years post diagnosis, but I’m lucky as I only live in Essex so don’t have to travel too far. There are specialists all over the uk and the world.
If you’re going to be given a diagnosis of cancer I’d say that this is the one to have. It can’t be cured YET, but it can be treated and controlled. Once controlled on the medication regime that suits you best. You can still enjoy relatively normal life ( but maybe with a few minor adaptations).
Watch out for depression. After being diagnosed with any chronic illness we are more prone to developing depression. I found counselling and anti depressants helped me to get my head around it.
I started Hydroxycarbamide when I was first diagnosed in February 2008 and am still taking it.
This group is always here for support and advice. I hope your son soon gets his blood cells under control and he can then crack on with living life.
Thank you Val_P, for such an uplifting response, because you’re right, depression can be a problem. When you’re fairly young, have always been physically fit and done a physically demanding job, the chronic fatigue, aches and pains can ware you down. My son has always looked on the optimistic side though, and that still rises to the surface.
We live in a very rural location in the Welsh Marches, right up against the Welsh border, so getting to centres of population isn’t as straightforward as for you. But luckily he does have a brother in Oxford and a sister in London, which may prove useful.
Thanks Wyebird, yes, we’re in the UK and the London seminar is on our radar. I think it would be a very useful for us to go as a family. It’s often the case that one of you thinks of a question that the others hadn’t thought of, and a bit of moral support is never a bad thing.
👍 Thanks for the good advice, Wyebird. We’ve had a look at it on line...it looks good! Just checking that those that want to go are free on the day. xxx
So sorry to hear about your son, such a worry for you all. I was diagnosed with PV aged 38, I'm 50 now. Like others have suggested I would push for peg interferon. I tolerated Hydroxycarbamide well for 5 years until it stopped working and caused a skin cancer. Given my previous history of malignant melanoma and basal cell carcinoma I don't think I should have ever taken this drug. I have now been on Peg Interferon for a year which unfortunately I don't tolerate very well at all. I hope it's finally starting to control my HCT which is being very stubborn! However lots of people on here tolerate Peg Interferon and are doing really well on it.
Thanks for responding and wishing us well, Jazzyb50, and so sorry you’ve had, and are still having, such a difficult time. It’s very obvious that treatment is by no means straightforward for all. I hope you get some benefit from the Peg Interferon as you’re not tolerating it very well. We’ll be thinking of you.
I think, now my son is reaching the point of being prescribed medication to control his MPN, we’re increasingly feeling the need for a specialist appointment to confirm what his best options actually are, and why. I feel the need to understand the thinking behind the eventual prescription.
Hi, I am so sorry to hear about your son's diagnosis, its a very worrying time for all of the family. I just wanted to say that I have ET, diagnosed in 2016. I am now being treated at the Churchill Hospital in Oxford, which has an excellent MPN specialist team. I am seen by Professor Adam Mead, who has spoken at many of the MPN Forums and is involved in research. I would highly recommend him and the team there. I was originally treated at Stoke Mandeville Hospital, After doing some research I wanted to be put on Pegasys but they did not have the budget for Pegasys so they recommended I transfer to Oxford. I hope this helps, good luck with your research!
Many thanks for your kind response, tessa46. I’m so glad that you are now getting the appropriate treatment and medication that you needed. We are in the process of looking for an appropriate specialist referral for our son. Oxford is certainly one of the options we are looking at and your positive feedback will help with that process.
Good morning , I have been so sad to read what a horrendous time you , your son and family have been through, thank goodness he had pulled through all of that and I wish him well in his ongoing recovery. I too would strongly recommend that your son should seek referral to a MPN specialist. He needs a bone marrow and genetic testing to confirm his diagnosed which in turn influence treatment options. I would imagine he feels left in limbo , the not knowing stage is difficult, at least when you have a confirmed diagnosis you can start to adjust and come to terms with it , learn more to understand the condition and then take ownership and have more control. I am not the person with MPN , it is also my son who was diagnosed 2 years ago so as a mother I understand your fears/ emotions you feel for your son. Thankfully we did not go through such a bad ordeal as your family, although it has been a difficult at times. Conor was 14 when he was diagnosed with JAK2 polycythemia Vera, this was following 2 TIAS. He has had 2 further TIAS and thankfully no lasting effects. We have been so lucky to have had the best care in the world. We travel 70 mile's to Addenbrookes in Cambridge once a month. He initially was under paediatrics ( not too common on this forum) but with the input and advice from the adult Haem team and advice from Claire Harrison. He is now transitioning up to adult care and we were very fortunate to see Claire last month in London, what an amazing woman. People respond differently to treatment so not a one size fits all. His bloods have been very tricky to manage, he's had 35 Venesections, has been on Pegasys up to the highest dose 270 MCG but this has not been effective on his platelets which have been so rising up to 1800 so instead of clots he has had a some bleeds. There has been lots of discussion as to what treatment next and agreed he's going to start Hydroxycarbamide We had some concerns initially and Conor struggled with the association of Chemo, but now is ok about starting as it's clear the Pegasys not working. It has been a rollercoaster journey with lots of ups and downs , no quick fix s My main advice to you and your son is , get a clear diagnosis, bone marrow and genetic test essential. Give yourself time to adjust emotionally , at first I couldn't stop thinking about what Conors future would be. Overall he lives a full normal life ( slightly new normal) he did well in his GCSES despite having had 3 episodes of loss of vision in the middle of his exams. He's started college , has dreams for the future like any young adult. He focused this year on doing something positive and we had a Charity fun day which between online donations we raised £13,800 for two Charities MPN voice and CLICSARGENT young lives V cancer. It was such a joy to hand over a cheque to Claire Harrison. If your son can be referred to a specialist centre it is worth travelling any distance to get the right care, he is entitled to only the best care. I wish you all the best sending hugs from one mum to another XX Christine
Good morning to you too. It’s wonderful to hear from another mum, and the mum of one so young. You’ve certainly been on quite a journey, and it’s such a worrying time for the whole family, but it seems that you have the right people involved in your son’s care for the best outcome. I hope things go well for him...give him our best wishes, won’t you.
My son has a JAK2 mutation @ 24% and others, who’ve responded to my post, think that given this and his age there must be some non-driver mutation influencing his symptoms. Clarity on that, a definitive diagnosis of the MPN affecting him and a specialist referral, are the things we’ll be pushing for at his next Haematology clinic. As his platelet count was starting to head upwards again at his last clinic, I think the watch and wait period is coming rapidly to an end. He’s also very aware of some of the symptoms he experienced last Autumn, like pins and needles and burning sensations in extremities, returning, so he can feel the changes happening inside him. As with your son, we’re certain that he has experienced TIAs in the past and long periods of excruciating headaches, but his GP insisted he was experiencing symptoms of stress. Now that he actually has a significant medical history, hopefully, he will never be dismissed in the same way again.
As we learn more and come to terms with Joe’s diagnosis, we are, on the whole, fairly up beat and hopeful. We now have a fairly clear idea of what needs to happen to get him the treatment he needs, and, as a family, we have the determination to push for that.
I’m so glad you got in touch, Greenbus99. I found much to inspire us in your response to my post. I would really like to know how Conor gets on with Hydroxycarbamide, because it may well be that Joe starts taking it in November if his platelet count keeps climbing, and I have little doubt that it will.
We all wish you, your son and the rest of the family all the best. Sending you hugs in return.
I will let you know how he gets on Jan. He had an opportunity to start the newer drug Ruxolitinib , the drug company offered it on compassionate grounds because if his age but Claire felt initially we should try something they understand very well and trust hence hydroxy They suggested side effects should he minimal esp as they think he's made if steel as had no side effects at all from high doses of Pegasys ! This has given us reassurance. He does have to go to sperm bank as a precaution for his future fertility we still have not got this appointment. Bless him , he has never even had a girlfriend yet😪 You take care of yourself too XX 😘
Glad things are sounding so positive. And, as for the visit to the sperm bank...there’s nothing like being prepared, because he will have a partner one day. Joe visited the sperm bank at the Birmingham Women’s Hospital, about a month ago. He and his partner had been trying to get pregnant, she sadly had a miscarriage earlier this year. So, I think they will, at some stage take advantage of it.
All the best to him, to you and all the family. 👍😘 xxx
Hello there, I’m so sorry you find yourself here, but you will get lots of help and advice from the lovely people here.
Your son is very young to be diagnosed with an MPN, and as such, I would advise you to get a second opinion. I was told by my hematologist that they do not need to do a bone marrow biopsy now and could tell from a blood test if someone was JAK2 or Calr for instance. Perhaps as he was in such pain he may have had an enlarged spleen, which is quite common with an MPN, and perhaps that needs a marrow biopsy. I am not a doctor, so can’t tell you.
If you decide on a second opinion, Dr Claire Harrison at Guys London is notoriously one of the best in the UK.
Perhaps you could call her or contact Maz at MPN. Voice. She is really helpful and perhaps could ask Dr Harrison on your behalf..
Another place which is a mine if information is Srdan Verstovsek and other researchers from MD Anderson Cancer Hospital. Sedan Verstovsek is probably the best in the world, but unfortunately is in the USA. I googled them an awful lot when I was first diagnosed. I learned so much about the condition and that put my mind at rest in many ways.
I take hydroxycarbamide and save for getting very tired, I don’t notice much change in my lifestyle. I would advise that your son tries to drink two and a half litres of water a day. Keeping hydrated really helps.
However at 42, I am surprised that the doctor has not considered Pegasys as an initial drug. Perhaps ask Maz about that.
I hope your mind is eased very soon and you can get some really good advice.
Hi there, thanks for responding to my post, everyone has been very welcoming, friendly and kind. They do, indeed, seem to be very lovely people and we can certainly see that MPN Voice will be a source of enlightenment, reassurance and encouragement. Maybe, at some point, we’ll be in a position to offer these things to others...
My son had his first haematology appointment in May this year, where he learned that one of his blood tests had returned a positive result for JAK2 mutation and that as a result he had an MPN cancer. His haematologist seemed to think that PV was the most likely culprit, and that view doesn’t seem to have changed over the intervening months.
While he was so ill, earlier in the year, his spleen, liver and gall bladder were all extremely enlarged. His liver and gall bladder have, pretty much, returned to their normal size. However, his spleen, though smaller now, is still quite large. As you say, fatigue and tiredness is also a problem...more so some days than others. And he isn’t so far, on any medication other than Warfarin and Aspirin, which is due to change shortly.
His next Haematology Clinic is on 25th November, and referral to a specialist will certainly be one of the topics under discussion. I don’t anticipate any problem with that; Claire Harrison has been mentioned by my son’s haematologist already. If we could get a referral to see her, I think that would be an ideal outcome. We’ll see what transpires...keep your fingers crossed for him.
Over the last few days I’ve subscribed to MPN Forum and found some enlightening articles, but Sedan Verstovsek isn’t a name I’d come across, so I’ll certainly give him a look.
All the best to you. Many thanks for the hugs; a hug never comes amiss. Hugs to you too.
Hi Jan, You are very welcome. If you feel the need for some support, you can also google Patient Power in the USA. Srdan Verstovsek does lots of videos and there are many people with MPNs just like your son and me and the info you get from them is invaluable.
There is another Dr and researcher called Ruben Mesa. If you google him ( he’s also at MD Anderson). He is brilliant and dedicated to MPNs. He does most of the clinical trials of MPNs.
Other than the normal health things like blue fruits, vitamin C and lots of dark leafy green vegetables for iron, Lots of water and some daily exercise is really important, even if it’s just swimming or walking. I can’t think of anything else at the moment, but If you need any help in the future, don’t hesitate to contact me.
Hello twinkletoes01. I am also a Mum and our son was diagnosed with PMF thirteen years next March at 37.I cant describe the feeling of despair at that time as it was so out of the blue .It followed on from routine blood tests for a medical for a new job.What he was told by his Haematologist was frightening. He lives in Australia and luckily was referred to a hosptal where there is a brilliant MPN specialist Dr Ritchie who is really up on all treatments availablle understands the problems talks and listens to our son. Today he is fit and well and only on Asprin but I know how lucky he is to be so well from some of the other lovely people here. I have met Professor Claire Harrison at the forums and she is brilliant. should your son be referred to her. Take care Bye Gill
Thanks for the lovely, reassuring message, babbitybumble. It is great to hear about such positive outcomes. Your son is very lucky to have been picked up so easily and so early via a routine blood test...I do wish my son had been picked up like that. At 42, we all think, including his haematologist, that he has had this condition for many years, undiagnosed. You’re right, the implications of what you’re initially told are frightening and really takes the wind out of your sails. We hope, though, given some specialist advice and guidance he can have a productive, satisfying and happy future.
Hi. I’m sorry to hear about your son. I am 42 but was diagnosed at 35. Like you and your son the diagnosis was a complete shock but you learn to manage symptoms. In the early days my children were younger my eldest was 7 and the twins were 3. I found it very difficult to work as a full time primary school teacher and to be a Mam! About 3 years in I basically hit a brick wall and my haematologist recommended I saw a councillor as I was having severe panic attacks. That was the best decision I ever made! I’ve never looked back. I have been on Ruxolitinib now for 3 weeks because I suffered a bleed from my spleen. I still work full time but fatigue is my biggest symptom but I need to work as it takes my mind off things. The ‘fog’ will clear! Best wishes to you and your son
Hello there, MamPRV, I’m glad you responded to my post. It’s been a very valuable experience to learn about so many people’s circumstances, the difficulties they’ve had to confront and the solutions that they’ve found. Like you, my son’s most problematic symptom, at the moment, is fatigue, which is often exacerbated by lack of sleep. It can really dent your resilience and, I think, make depression more likely. My son has had his down days, but on the whole he seems to have coped extraordinarily well with this new reality. We all talk about things a good deal, but I’m also aware of his periods of very deep introspection. As you’re aware, it takes a while to get your head around the situation, the jargon and your personal experience.
I was very sorry to hear that you’d experienced a bleed from your spleen, but reassured to hear that you’ve been treated effectively with Ruxolitinib. As you say, our “fog” will clear and, I hope, the specialist appointment being sought on my son’s behalf will help with this. I’m sure it will...
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