Hi, hoping someone on this forum may be able to assist in obtaining peer reviewed information that states that symptoms are not dependent on platelet counts.
Husband is ET, JAK2 positive and has severe fatigue, concentration problems and brain fog.He has followed all the advice of exercise and diet and it’s made no difference.
It was suggested by his haem that he has a mood disorder and this has been ruled out as he has had an assessment by a psychologist.
The haem said with his platelet counts bring only slightly elevated they wouldn’t expect these symptoms.
He has had blood tests to check for vitamin deficiencies and even an MRI of his brain.
The only logical explanation is that it’s due to his MPN.
He has been unable to work but is being dismissed.Any help would be greatly appreciated.
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Thanks for your response Ainslie.Not sure of the exact numbers but recall reading that symptoms aren’t related to platelet counts and some patients with high platelets have minimal symptoms and others with near normal can have severe symptoms.It was posted on this forum and I am hoping to find peer reviewed literature stating this.
Not adding much but I did ask the specialist why I had noticed symptoms over years despite my platelets not being all that high and he said it isn’t necessarily a linear relationship. (I did have other fluctuating counts and other health related issues so it was also a murky picture - hence slow to reach diagnosis).
I do not know of any specific studies that correlate fatigue with platelet levels, likely because these are often two different symptoms of ET. Having too many platelets does not necessarily cause fatigue. The thinking is that fatigue is related to the deregulation of the JAK-STAT pathway causing the overproduction of inflammatory cytokines.
"Cytokines have been documented to induce fatigue in both malignant and nonmalignant states." onlinelibrary.wiley.com/doi...
The deeper answer to your question is quite complex and involves multiple factors. It would be best answered by a MPN Specialist who can evaluate your husband's specific case. The statement by the hematologist regarding platelet levels and fatigue suggests that this is not a doctor with extensive experience treating MPNs, Suggest getting another opinion from a MPN-expert provider.
Thanks Hunter, this is our second haematologist as we weren’t happy with the first.We tried to see her partner who is classified as a specialist but he referred us to her as he couldn’t take new patients.
Thank you for the link regarding JAK2 and cytokines.
After systematically removing all other possibilities for his symptoms we are left with the only logical conclusion that it’s linked to his MPN and mutations .
Will definitely keep looking for an MPN specialist who can see him.
Hi I totally agree with Hunter - it is IMPERATIVE you see an MPN specialist - not an ordinary Haematologist! Even if you have to travel to see o e- I’m guessing you live in the States? Is there somewhere you can have access to a list of MPN specialists - there is in the uk - on the MPN Voice App.
Here is an analysis of the relationship of symptoms and blood counts in PV patients. Although not specific to ET, it would be reasonable that symptoms could persist with controlled counts of any MPN patient.
"Symptom Burden and Blood Counts in Patients With Polycythemia Vera in the United States: An Analysis From the REVEAL Study"
Results stated "Fatigue was the most frequently reported symptom. The severity of individual symptoms, except those of pruritus and night sweats, was not affected by CHR or the number of blood counts that were controlled."
Conclusion stated "Symptom burden in patients with PV can persist despite control of blood counts, which suggests some discordance between laboratory values and symptom burden."
Thank you this is exactly the info we are looking for.
I know many do not have symptoms and unfortunately doctors then use these patients as their base and cannot understand when you explain that yours are severe and affecting daily life.
Many patients do have symptoms, but some doctors have selective hearing. Some doctors explain away MPN symptoms that are not referring to clotting or bleeding or changes in bone marrow as being something else (e.g., anemia, sadness, anxiety, etc.). And over time patients stop mentioning many MPN symptoms to these doctors. And the doctors become even more convinced these symptoms are not related to MPNs, despite science showing the opposite. My hematologist never told me severe fatigue and cognitive dysfunction are a part of this illness, although ET tortures me, and they refuse to talk about it as in their eyes since there is no treatment for it, why bother to mention it. But they will hear it from me and I will show them the studies every single time we talk, as they cannot leave it all on the back of patients to manage a complex disease.
Yes I agree with you. Years ago (12), when I was diagnosed with ET JAK2+ I found some information study that MPN- ET was related to inflammation as a reason. and my doctor dismissed that information as untrue. And yes, I suffer greatly with cognitive dysfunction, fatigue, easily irritated, brain fog, anxiety, etc, etc...
That is exactly how I am- I forget my words easily- half way through a sentence even! - I am so easily fatigued- but the bone ache is dreadful- and comes on quickly . I take paracetamol and it helps. My consultant did explain it was a symptom of Interferon - and the bone pain has got worse as my ET progressed to PV.
I have been given the choice to change my meds to Ruxinitlib but then I have to weigh up Bone pain for which I can medicate at the moment to Skin cancers and the fact that I may gain weight( I’m already a bit chubby and trying to lose it)- and a propensity to be more susceptible to other types of cancers. My consultant was extremely helpful and when I asked him - ‘if I was his mother what would he advise’ - he kindly advised that he thought a wait and see approach would be best at this time as my bloods are reasonably controlled with venesections and interferon- and that Rux would be a last choice at the moment. So I think I’ve decided to go with this.
My cancer specialist nurse is an angel in disguise! I can text her and she either rings or replies as is necessary. She also gives me my results as I am controlled well. I have discussed all of my side effects you mention with her and she is referring me to a unit within the hospital who will deal with all of my side effects! Unfortunately I can’t remember the name of this unit but I will receive a hospital letter advising me when I can have an appointment and will let you know how it goes.
That is fantastic that you have a great support team.That is what we are looking for.Someone who takes symptoms seriously.
When my husband mentioned bone pain with his ET he was told that bone pain is not a symptom of ET.He then had a PET scan to see if he had anything else going on and barring a few degenerative issues nothing was found.
All these posts help immensely as my husband doesn’t feel so alone now.He knows that others have similar and that he has to push for it to be addressed.
Re: your bone pain- did it start when you began treatment with interferon?
Given your writing, may I infer that the INF are you on is Pegasys?
Interferons are usually more associated with generalized aches- think flu symptoms with muscle, joint, and just all-over achiness, whereas at least in my reading [and personal experience for what it's worth] the MPN itself is more likely the reason for aching that is localized more to the bones, which may be because of the changes occurring with hyperactivity and uncontrolled overgrowth of the stem cells in the marrow spaces [see the reference below].
If you have worse bone pain in the day or two after your INF injection, it may well be the cause of the pain, in which case, you might benefit by pre-treating yourself with the paracetamol at least a few hours before the injection, which might prevent you from experiencing it, or at least serve to attenuate its severity proactively.
On the other hand:
"Bone Pain
Bone pain is one of the primary symptoms of myelofibrosis and a common symptom of polycythemia vera. This pain is believed to result from an excess amount of cell turnover in the bone marrow, inflammation of the periosteum (the layer of connective tissue that surrounds bone), and hardening of the bone (osteosclerosis). According to the ASH study, 48.5 percent of people with MPNs experience bone pain."
I was offered Jakafi [Ruxinitlib] but have all the same reservations that you do, especially with my personal and family histories of skin [and other] cancers- which is also why I strongly advocated for myself in getting hydroxyurea discontinued in favor of my INF [Besremi].
All of this jibes completely with my 10 to 15 years of PCV experience both pre-and post- diagnosis. I had early and severe fatigue, night sweats, aquagenic pruritus, hot flashes, and persistent facial flushing/ruddiness out of character from anyone else in my family long before my actual cell counts were abnormal- although my H&H [hematocrit and hemoglobin] were always elevated despite donating double red-cells as frequently as the red Cross would let me.
In point of fact, I had been diagnosed with [at least ] seasonal affective d/o and tx w/ 2 different SSRI's without any relief before finally getting the triple cell line elevations that led to my diagnosis.
That said, while my fatigue and night sweats have significantly improved on Besremi, my pruritus has not.
But thanks to this forum, I now have a treatment for that in Beta Alanine.
I think that MD is behind the times, especially since Interferons have been shown to be so effective, and mostly well-tolerated.
I am at the highest recommended dosage of Besremi at 500 mcg injected every other week, and except for 1 2-day-long episode of flu-like symptoms in the middle of my dose escalation, I have had no side-effects.
This is in sharp contrast to my experience with taking even the relatively los dose of HU I was on for several months before I could get changed over to INF.
A trend toward early treatment for disease modification v[ i.,e., preventing disease progression and/or transformation vs. waiting for worsening and downstream disease effects] seems to be developing as advocated by MPN specialists like Dr.'s Silver and Harrison.
"Advantages of early treatment
Early treatment of MPNs can result in better outcomes for patients in terms of lowering the risk of thrombotic events and delaying disease progression. Research has shown that JAK2 V617F+ cells can be present decades before the development of MPNs as a result of a single mutated HSC growing exponentially and competitively over years. In addition to addressing cell counts of patients with MPNs, interferons can have positive effects on the driver mutation-bearing stem and progenitor cell pool, thus effectively reducing VAF. Higher JAK2 V617F VAF correlates with negative clinical outcomes and a higher incidence rate of MF. It is important to note that although the early reduction of JAK2 V617F may result in better clinical outcomes, it is not currently part of treatment guidelines."
and
"Discussion
In a recent survey, 35% of patients with ET agreed that prevention of vascular/thrombotic events was the most important goal of treatment, compared with 57% of physicians. For patients with MF or PV, the slowing or delaying of progression was noted as being the most important goal of treatment, whereas physicians reported improvement of symptoms and prevention of vascular/thrombotic events as being most important for those patients. The use of interferons in patients with MPNs is of particular interest as these therapies may allow for a combination of thrombosis reduction and disease course modification, supported by the driver mutation VAF reduction observed in prospective studies."
This illustrates what I/we/most of us want to prevent most:
"Essential thrombocythemia patients develop acute myeloid leukemia (AML) at a rate of 1-4% during a median follow-up of 7-10 years. The risk increases with advanced age, anemia, platelet count ≥ 1000 × 10(9)/l, the presence of ≥ 2 somatic mutations and after the first decade of diagnosis."
"Crucially, there is also a risk of the disease progressing to an advanced stage, Mesa told MedPage Today. "It can progress into myelofibrosis. Typically after patients have had the disease for 10 years or more, scarring develops in the bone marrow, and the disease can become more life threatening, with low blood counts, ineffective functioning of the bone marrow, worsening symptoms, and from there it can progress to acute myeloid leukemia, which can be very life threatening. About 10%-20% of patients progress, the majority of people do not. Many can live close to their normal life expectancy, or live their normal life expectancy." [if they do not develop/experience thrombosis...-Editorial by PA]
The big problem is that, except for treatment with INF, there is no way to predict in advance who will be in the sad 10-20% that experience disease progression..."
Long-Term Interferon-α Treatment in Essential Thrombocythemia
"Background: Essential thrombocythemia (ET) is a chronic myeloid stem cell disorder characterized by an uncontrolled production of platelets. Common complications are recurring thrombotic events and/or haemorrhage. Although ET is in general associated with good prognosis, prognostically adverse events such as fibrotic or leukemic transformation occur at an increasing risk in patients with long disease duration. Since interferon-α (IFN-α) harbors the potential of inducing molecular remission in approximately 20% of ET patients as demonstrated by JAK2 V617F, the drug may prolong the natural course of the disease. Therefore, in particular younger ET patients are likely to benefit from long-term IFN-α treatment. Since data on long-term effects of IFN-α treatment are scarce, we here report on safety, efficacy, and molecular markers from ET high-risk patients being treated with IFN-α at our institution for up to 21 years.
Interferon-alpha in the treatment of essential thrombocythemia
"Interferon alpha (IFN) inhibits the growth of megakaryocytic progenitors in normal hematopoiesis and in patients with essential thrombocythemia (ET) leading to a reduction of peripheral platelet counts. The effectiveness in the induction therapy of patients with ET is demonstrated in 11 international studies including 212 patients. With an average dose of about 3 mill IU IFN daily, the response rate was about 90%. Further studies investigated the practicability and the success of IFN maintenance therapy. The results show that IFN can effectively control platelet counts over a period of several years. During maintenance the IFN dose could be reduced in the majority of patients. However, sustained unmaintained complete remissions were obtained in only 12% of the patients. Side effects were frequently the limiting factors in treatment with IFN especially in older patients. Analyzing a total of 273 patients, IFN therapy was terminated in 25% against the primary treatment plan. Of the currently effective drugs in controlling the platelet counts in ET, IFN is the only antiproliferative agent with immuno-modulating properties. Thus far, no leukemogenic or significant gonadotoxic effects have been observed. In a subset of the patients off all therapy, the sustained remissions support a long-term tumor load reduction effect by IFN. Thus, IFN is a promising agent in cytoreductive treatment of ET especially in younger patients.
It sounds like you have ticked all the boxes with tests. But: In case you are unaware of this, vitamin tests especially B12 is notoriously badly treated as doctors stick to the ranges like they are set in stone. However, you can have deficiency symptoms and still be in range. It’s a wide range, and you could be only just in range, but the Dr may think it’s fine. B12 deficiency can cause all the symptoms you have mentioned, as can low folate and iron. In range is not always optimal for good health.
If his levels are towards to lower end this might be an issue. Can be due to dietary issues ( vegetarian) , gut health issues, medical treatment- some drugs deplete your b12 .
A decent level of vit D also important- not just in range.
So sorry your husband feels so bad. I too have Jak2 ET All I can add is that my platelets at around 600 caused extreme fatigue and brain fog and depression. My lifelong partner put me on a whole food plant based diet, kept me moving and 3 x week in the gym. Within about a month I was a new person and most of the fatigue and brain fog has been gone for nearly 5 years now. I am 64. I am still on aspirin, B12, simvastatin plus a multivitamin.
The only "symptom" I had which took me to doctor is a permanent non itchy rash which started below my knee. Since then it has spread down to cover my feet. Other than that I felt perfectly "normal"
Not sure if this is relevant but it's what lead to a blood test which told of my high red platelets and also the Jac2 ET diagnosis no other symptoms at all.
I take Hydroxycarbamide 500mg 3 times daily, alongside Clopydogrel ( had reactions with Aspirin) as blood thinner, this has been since diagnosis some 10 years ago.
You have found a good forum here, and "Hunter" is super clued up but of course the best course will be finding a good Haematologist.
I do hope you find some answers, and life will improve. Very best wishes.
Thank you Jenny, he was only diagnosed late 2023 so it’s still new.
He is only taking baby aspirin as his doctor feels due to his age that he is low risk.
I am reading about cytokines and how they may affect symptoms.There is so much the doctors still don’t know about MPN’s but hopefully a cure is found in the future.
Morning I can only offer understanding my platelet rising levels were ignored for 8 years by medics who apparently thought each rise was reactive and didn’t look back at the trend
. My symptom burden from my point of view was life changing brain fog continually wondering if I would remember how to do things walking out of a cinema unable to remember the name of the film or not sure how to put petrol in my car or feeling lost and desperate to get home ,Loss of vision and sometimes speech and spatial awareness . These things put down to sudden migraines which I had never experienced before but only after diagnosis of ET. Referral to stroke unit.
Put on Clopidigrel stat aspirin dose and from that point the brain fog improved and visual and speech loss has not returned .
My referral to Hamatology had been a token gesture and Haematologist told me my rise in platelets had been considered insignificant in her view I would not have been treated until finally a BMB revealed Jak 2 ET but still she maintained it was low level and nothing to do with symptoms.
My view is that I am sensitive to slight changes. And these have effects . Bruising often first signs
Professor Harrison with whom I had a one off appointment and testing agreed the symptoms were related . But she handed me back to local Haematologist as the treatment Hydroxycarbamide was effective . I was diagnosed in 2022 . Hydroxycarbamide has brought more fatigue and dizzyness etc etc but I am more accepting that other symptoms are related and that is reassuring .
I have had to adjust
I am retired so don’t have demands on me that I was finding hard to cope with .
At least it sounds
As Though many assessments have been done which at least suggests medics are taking symptoms seriously . The difficulty is whether they accept the revalence .
In this site you will see so many others with these symptoms which has been reassuring for me I hope for you to .L
Tipsy, your reply has really helped.I read it my husband as he too has confusion, forgets what he was saying and struggles with many things he used to be able to do with ease.
His GP has sent him for all the tests but his haemotologist said with his platelet count they don’t expect to see symptoms and the symptoms he describes are not what they see in ET patients.
We are hoping we can get an appointment with an MPN specialist and maybe they can give us a clearer picture.
Hello, I am so sorry to read of your struggle. I was diagnosed in 2000 and have ET jak2, I have been prescribed Hydroxycarbamide in varying sounds for the last 24 years. Fatigue has led to me slowly reducing my working hours in education over that time, I finally took early retirement 2 years ago. I have raised three children and now try to support my children helping look after my grandchildren. I plan my day around when I know the fatigue will start. I get the most done in the morning and walk every day. I just wanted to share my experience over the years, I see an MPN specialist in Manchester.
I hope you find the information you are searching for, and find help and support for your situation moving forward.
Firstly let me say you are amazing for helping with your grandchildren despite your own challenges.That must have been very difficult having to teach when you were having fatigue.
My husband’s day consists of waking 7.30am and then he walks for an hour.Around 10am he sleeps which is normally 3 hours and then he is awake for about 2 hours and then asleep again for 3 hours. He has had to stop working as it’s not a productive day being asleep for 6 hours of the work day.His brain fog, confusion only adds to this.
Hopefully once we see a MPN specialist we will have some answers.
Hi there, I was diagnosed in 2016 with ET and have been on drugs ever since. Seven years hydroxy and this past year, interferon. Platelets are in a good place but my fatigue has never improved. I believe having a chronic disease and taking drugs all the time, is a lonely old business and that takes a heavy toll.
Blood counts and symptoms are not strictly linked. One can have slightly elevated blood counts and experience many symptoms. This because symptoms are often the result of the inflammation that results from the MPN. And JAK2 mutation is known to be associated with inflammation, although other mutations in MPNs cause also a substantial amount of inflammation.
Symptoms depend on a number of factors. Type of mutation is one of them. Some mutations are more likely to give symptoms. Age is another factor. Sex is another factor. Depending on the mutation, either men or women tend to experience more symptoms, with an individual component here, as some people do have predispositions for more reactive immune systems too. Younger people with certain mutations seem to experience more symptoms.
Chronic inflammation resulting from MPNs is considered to be behind some of these symptoms.
All the symptoms you described your husband had are MPN symptoms, not a mood disorder. Sad mood is included in the list below, but it is an outcome of lack of treatment for other symptoms, such as fatigue, cognitive dysfunction, pain and loss of quality of life, more than anything else. I looked at their scale and for sad mood, the validity is low, so that I doubt it stands scrutiny.
Fatigue, cognitive dysfunction - brain fog, pain, they are common symptoms in MPN, irrespective of the level of risk, and this study below shows their link to inflammation:
"Prominent symptoms include fatigue (92.7%), early satiety (61.9%), abdominal pain (45.9%), abdominal discomfort (53.2%), inactivity (60.5%), headache (48.3%), concentration problems (61.7%), dizziness (55.2%), numbness (61.3%), insomnia (65.4%), sad mood (62.7%), sexuality problems (57.9%), cough (46.4%), night sweats (56.4%), itching (52.6%), bone pain (48.5%), fever (20.2%), weight loss (34.2%), and impaired quality of life (84.2%)"
"Notably, neither PV nor ET clusters differed by risk scores suggesting symptomatology likely presents independent of disease stage and risk scoring tools should not be applied as surrogate measurements of disease severity. In MF, clusters differed by a variety of clinical variables as well as risk scores (DIPSS) with increasing degrees of symptomatology correlating with higher risk score categories."
So many hematologists ignore or outright dismiss fatigue that patients end up struggling to survive the day without any help or support. Fatigue in MPNs can be very debilitating, cognitive dysfunction is a part of it. One needs to pace, to organise the day based on when one has more energy, and get support to manage energy the best and be able to keep functional as much as their bodies allow them.
"Fatigue in MPN is common, debilitating and distressing. It affects all aspects of health, wellbeing and life. Health professionals could affect patients' lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management. More systematic data describing the causes and management of MPN fatigue is needed."
TTA, your reply has been very informative and helpful.
My husband has the CBL and DNMT3A mutations as well.Its a bit vague what significance these are.
It is very frustrating when the haematologist insists symptoms are not related to his ET.We have undergone multiple tests, sleep studies, psychological evaluation in order to remove all the concerns the haem had.We have exhausted all avenues now and can only assume it is due to his ET.
The issue is that it seems there is no treatment as he was told cytoreductive treatment can make the symptoms worse.
We are hoping with a third opinion that they may be able to acknowledge that his symptoms are indeed from the ET and the mutations.
My hematologist is the same. I have a rare mutation and it looks like my ET is hereditary, and they would rather perish on the hill of claiming my MPN symptoms are not due to MPNs than acknowledge what is already well known in the scientific literature.
That little gesture, of acknowledgement of our symptoms would make life much better as instead of wasting time and finances on many medical evaluations with different specialists to explain said symptoms, one could have the acknowledgement that symptoms are from ET from our hematologists and then go on with accommodations and support, so that we get some quality of life back.
With the help of my partner and a good GP, I managed to organise things around me so that I avoid being bedridden from extreme MPN symptoms. It would help if my hematologist would chip in to this effort, as they have access to many more resources. But until that miracle happens, it is all on us.
My therapist's job these days is literally to prepare me for more negotiations with my hematologist so that I get the support and accommodations that I need. Because it seems like the only ones reading scientific studies on symptoms of MPNs and mechanisms behind them are us, the patients, our close ones, our therapists and a handful of MPN specialists who often have authored said studies.
Strangely his haemotologist didn’t seem concerned about his other mutations.I am not sure how to interpret from test results if his DNMT3 preceded the JAK2 mutation.
We will be asking the new haem all these questions though for clarity.
I appreciate you taking the time to find that info.That has been very helpful.
Hi. I also have ET. First diagnosis in late 2018 at age 66. Platelets used to be in the 500-600 range. More recently in the 400-500. I have been on hydroxy urea since 2019. Usually 1000 mg per day.
Serious fatigue early on. Forced me to retire. Two years ago. This is where it gets interesting. I did not want to be a tired old man. So I started to read. Anything and everything I could find about natural /alternative medicine. Tried acupuncture. Seemed to help a little. Got deeper into exercise. Primarily walking 18 holes on a hilly golf course carrying my bag. This really helped. Especially in the sun. More so when I stopped wearing Sun screen.
But I still needed an hour nap every day.
Got off coffee. Replaced it with Soursop tea. Added more red meat and eggs to my diet. With lots of fruit and vegetables. Got better.
Then discovered intermittent fasting. Stopped eating after dinner. No breakfast. Lunch at 12 or 1. Got better still.
Was having some irregular heartbeats. Discovered cayenne pepper and Tumeric. Started drinking two large glasses of water each morning with some good stuff in it. ¾ teaspoon cayenne. ¼ T Tumeric, 1T creatine, 2T lemon juice. The cayenne “tingles” a bit. Irregular heart beats stoped. And fatigue got better.
Then found an ancient supplement called shilajit. You can get it on Amazon. Comes from high into Himalayas. Decayed vegetable matter Known for boosting energy.
Ok. That is lots of “stuff.” Some of it seems weird. But the naps have disappeared. I see my hematologist/oncologist ever 6-8 weeks. Her most recent comments have been “what are you doing? Why do you feel so good,”. I do not know the answer. But I believe it is some combination of the above. And I suspect that the fasting and diet changes are the most important.
The end result. At 72 I am going back to work next week. Teaching calculus. Only one period a day but lots of prep work each day. And I plan to keep playing golf. Maybe only 9 holes each day. I still take the hydroxyurea. And I think that may be the primary cause of my fatigue I suspect that all of the above “things” have simply helped my body detox from this medication
As they say, “your mileage may vary.” But I do believe that it is possible to find natural/alternative approaches.
That is absolutely amazing and great that you are feeling so much better.My husband used to be an avid golfer and he would love to play again but the fatigue means the majority of his day he is napping.
Will ask the haem about the natural therapies and see if she is happy for him to try them.
ashpublications.org/blood/a... Skip to Table 2 for a useful list of symptoms but fatigue for ET patients is 90.3% of patients asked and Concentration problem 55.8% . May be worth sharing with your husband's medic? Good luck with everything.
I was diagnosed with ET Jak 2 positive in 2008. The symptoms you are describing are very similar to my experience. There are several ways to get information. You can find information on Patient Power, MPN Advocacy and Education, and the Leukemia and Lymphoma Society, to name a few. There are YouTube videos and articles. I have attended in person conferences and Zoom seminars. I have been researching this for 16 years, especially since it turned into Myelofibrosis about 6 years ago.
I wish your husband well. Keep fighting to find the right doctor. When I thought I was transitioning to MF, my original hematologist didn’t believe me. That’s when I changed doctors and she diagnosed me with MF intermediate 1. I’m now looking at a possible transplant.
It’s good that you are so in tune with your body that you realised something had changed although you would expect your doctor to have listened and taken your concerns seriously.
We have presented or Hematological with various studies but she has not really been interested and merely said in her clinical experience she doesn’t expect to see severe symptoms with his platelet count.They have varied from 590 but recently in the 440 range.
We have a few options for specialists and will be seeking another opinion.
I wish you well with your transplant and hope it cures you.
Well, my platelets at the time were averaging from the 800’s to 900’s. My hemoglobin was dropping and my fatigue and light headedness was greatly increased. My original hematologist literally said he didn’t know what to do but wouldn’t schedule a BMB to see if I was progressing.
That is very distressing. As other members have suggested, if you aren’t feeling heard or receiving the care you deserve then it’s time to move on.With a chronic cancer it’s imperative to have a support team who will work with you and take your concerns seriously.I would be pushing for the BMB, you know your own body and if something doesn’t feel right, keep pursuing answers.
hi. I got diagnosed with ETjak2 positive 6 years ago. Zero symptoms at time of diagnosis just high platelets flagged routine blood test. Platelets checked every 3 months ( I’m in uk and 52 year old very fit and healthy female) platelet count usually between 650/750. However lately they have been as high as 980. Yet dropped back to 750 in may. Waiting on latest . Results Monday. So is fair to say my fluctuate a lot.
Last year I worked 5 days a week. I run a very busy cafe. On my feet all day 8/10 hours. Would finish and go for 6 mile walks or 40 mins on my cross trainer. Fast forward one year. I work 4 days and I’m exhausted. Now I’ve had children. I’ve had the sleepiness nights and felt tired. This is not that feeling. This is next level exhausted. Collapsing in chair when I get home. No cross trainer no 6 mile walk. My iron was very low earlier this year . I’m vegetarian . Went up so stopped the iron supplement. I started taking again off my own bat this week to see if it helps . I too feel you are just dismissed. Unless you are on the cancer drug you are left to your own devises. I take 75mg aspirin daily . Thats it! I think very little is known about ET. A friends sister has recently been dismissed. In her mid 60’s on a chemo drug. Again suffers from exhaustion . She’s given up work and has iron infusions every 6 weeks.
I’m going to have an in depth conversation with my heamotologist next visit. I want answers as to why it’s acceptable to feel as I do with no answers and no attempt to get to the bottom of it. I’m not in a position to be giving up work but feel I’m heading that way.
8 x 500 Hydroxy a week. 1 x clopidogrel 75 mg a day. I also take a statin andsomething for barrett's. I find the fatigue the worse and think this is related to t he HU. I guess it could also be aged related. I try to keep fit and watch my diet. I cut out red meat. hemo said that tiredness is very common but no advice.
Thanks for your input Summer.Every bit of advice is helpful.
Our haem said a healthy diet which meant very few changes as we have always had a healthy diet and exercise.Despite this the fatigue, cognitive decline, confusion persist.
The only time they would consider starting treatment is if he has a thrombotic event as they deem him low risk at 52.
Candy, my husband was very active a few years ago, cycling 25km 3 times per week, walking,playing soccer but has progressively become fatigued.We think it’s been undiagnosed for a few years and now he has been hit with the full fatigue, cognitive decline etc.He reduced his working hours a year ago due to fatigue and brain fog.At the time he thought he was getting dementia it was that bad.
I hope you get answers from your doctor as there must be nothing worse than feeling the way you do and doctors not taking it seriously.It impacts not only your ability to work but social aspects of your life too.
Everyone on here suggested an MPN specialist and hopefully they would have answers for you.
I do believe with this being a chronic cancer that a doctor who is empathetic and works with their patient is imperative.
Thanks for your reply. I’m due to see my heamotology doctor September. I’m going to mention my joining this forum and how everyone seems to be suffering the same symptoms. Yet no one seems to be giving a damn . I will update you if anything useful comes from the appointment .
The studies you all provide are very helpful. My doctor never gives me this kind of info. I have to admit that it is a downer to be taking Besremi with all its risks "only" to be avoiding strokes and not to be getting free of symptoms, as I'd hoped. However, I think the interferons or the platelet reduction has reduced my classic visual migraines, that's something.
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Pegasys - possibly closer to slowing progression than anything else?
SCT journey update No.4
PV - HU vs Jakafai, Insurance Denied Jakafai
Insect bites
