Hi. I'm was diagnosed with ET - Calr in October 22 (female aged 52) (taking Asprin), I had gone to my gp in Dec 21 as I found out my blood pressure was though the roof (on tablets for that) They did blood tests etc every few months till August, when they referred me to hospital as my platelets had kept rising to 650. Now at 750.
I do work full time and a part time carer for my father, so am normally tired / exhausted by the time I'm leaving work / dad's, now thinking this may be a symptom and my tiredness isn't normal.
I've only had 2 hospital appointments (1st phone, then in person), not sure if either of them specialise in MPN's or just general haematology, I didn't think to ask (is there a difference ?) And haven't been given an email address or anything to contact them if I have questions or problems. (Is this normal?)
Trying to stay positive, as I've googled / read MPN voice, however I do have questions.
The main one right now being...
Am I more likely to get another sort of non blood cancer, lung/ breast etc. If so what is the risk ?
Thanks for any information, it really is appreciated.
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Cat_lady52
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General haematologists are experts in the more common blood cancers (eg lymphoma, myeloma) but as MPNs are rare, they don't get much experience treating them so it is much better to see one who specialises in MPNs. Tiredness is a symptom of MPNs generally but it varies from patient to patient.
For questions, your haematology department will have specialist nurses. In my experience they are very knowledgeable and helpful so you could perhaps phone the hospital and ask to be put through.
I'm pretty sure that having an MPN doesn't make other cancers more likely than before.
There has been a correlation in studies. This is a good summary:
"Patients with MPN have an increased risk of developing secondary cancers of the skin, lung, kidney, and thyroid, as well as lymphoid cancers." For skin our treatment has a connection: "hydroxyurea has been shown to increase the risk of non-melanoma skin cancer"
This report has indication in some of the studies that ET is lower risk in these 2nd cancers "cancer incidence diminished for patients with ET but increased for patients with polycythemia vera and chronic myeloid leukemia"
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There have been other posts on the idea that we should take extra care to get screenings or at least look out for these solid tumor cancers. This new blood cancer test has been in the news.
Hello and welcome to the forum. Glad you found your way here. This is a great place to get support and information from the perspective of others with a MPN.
Prepare for a long and interesting journey learning to manage a MPN. I was diagnosed with ET 30+ years ago. It progressed to PV about 9 years ago. I have lived a rich life and at age 67 continue to do so. There have been a few challenges along the way, particularly in the last several years. All of these challenges have been managed with my wonderful care team, and support from family and friends, especially the friends on this forum.
Many of the issues that we deal with are complex. Understanding of MPNs has grown quite a lot in recent years. It is important to look at more recent sources when looking for the "facts" about MPNs. It is also important to look to reliable sources to find the information you need. MPN Voice is an excellent starting point.
Here are a few factoids, but do not consider any information out of the context of your individual case, General information about MPNs cannot always be applied to your individual situation and prognosis.
Are we more likely to get other cancers? - On a purely statistical bases, people with MPNs are more likely to develop other neoplasms than people who do not have one of the MPN driver mutations. There are also non-driver mutations associated with MPNs that are also associated with other cancers. This is quite complex and no one should make any assumptions. This is a question best answered in the context of your specific case by a MPN Specialist.
I do have another condition, Neurofibromatosis Type 1, that is both its own disease entity and a non-driver mutation for MPNs. Both the JAK2 and NF1 mutations increase risk of neoplasms. Together they increase my risk and increase my risk of MPN progression. Despite this, there is nothing different that I am supposed to do. I just never skip any routine screenings (colon, prostate, skin). I check into any anomalies that show up on imaging. I have also chosen to reduce my exposure to carcinogens in my environment and foodstream.
Feeling tired - Fatigue is the most common MPN constitutional symptom. Fortunately, there are things you can do to manage this issue.
MPN Specialists - MPNs are rare disorders. Most hematologists have little experience with them. It is important to consult with a MPN Specialist to ensure optimal MPN care. Here is a list. mpnforum.com/list-hem./
Hello Cat! I’m in the UK and was diagnosed with CALR+ ET ( by accident, I would add!)about 9 months ago. I’m 79 so it may have lain undiagnosed for years. After private consultations with a haematologist, I saw the NHS hospital haematologist who is entirely familiar with MPN every 4 weeks but recently this had been extended to every 12 weeks given that I’m ticking along quite well on Pegasys interferon alfa2a. I do get tired but this may because I rise at 6.30 am to walk the dog in the park. I have a bit of a snooze in the afternoon although this is simply because I want to be bouncy enough to carry on with my night owl activities. I don’t have a nurse assigned to me although if I’m concerned about anything, the haematologist says I can always be fitted in to an appointment. I try not to dwell on the diagnosis and haven’t given up anything that I did prior to it. I would add that my GP was unfamiliar with the condition. This is an excellent forum .
Thank you Gilded, I'm so gratefully to hear that life goes on 😊 i'm going to phone my nhs haematologist and found out if he or a nurse is a specialist in MPN.
My platelets reached 1665 in February this year, now down recently to 412.
I take hydroxycarbamide.
I do suffer with tiredness, unsure if condition or medication?
Try not to read to much on google, use this forum.
Unfortunately I hit a wall in June this year of becoming anxious.
Which was due to a year of health and life struggles, this can also cause tiredness. As does being 46 with a teenage daughter and 10 year old son 🤣
I speak to my haematologist at least every 2 months, after my blood tests at local hospital and they are really good.
I have also been passed onto Guy's Hospital MPN specialists, who oversee me. They check bloods every 6 months at moment. Depending where you live, maybe worth asking your local haematologist.
Thank you Smudger01222, i was having a good old wobble yesterday 😊 But it is so good to know that other people have a few anxious moments, i suppose it's all a new learning curve. Merry Christmas and your teenage daughter will become human again, when she reaches 18 ish. 🤣
Hi Smudger, This forum is full of wobbly people so we can all rock together. The forum is here for you so you can let it all out. I find that a great support.
when I’m low, I sing the Morecambe and Wise song “ Keep on the bright side of Life”. Corny but cheerful. My dog barks because he thinks I’ve got a lousy voice and that amuses me . I tell him he’s no Pavarotti and that chastens him .
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