Hi I am Amanda from RotherhamI am 47 years old and have pv and am jack2 positive and also my white platelets are raised. I have only been to see a hematology doctor when I was first diagnosed. I am currently on 2 500mg hydroxycarbamide 1 day then 1 500mg the next. My bloods are done every 4 weeks at a local walk in centre. Then a nurse phones me the day after with my blood count and just sends my medication out they started at 1119 now they are 411. But my stomach is s
Swollen and I look like I am 6 months pregnant is this normal . X
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Mandz12
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I think you need to see your GP about your swollen abdomen. As far as I know there are a number of possible causes, not necessarily serious, which may be unrelated to your MPN.
Are you seeing an MPN specialist? You say you have PV but seem to be describing a high platelet count and no reference to elevated HCT. (It’s entirely possible to have high platelets with PV - I have! - but you’d also expect to see other counts more associated with PV also elevated.)
That also seems a lot of Hydroxy for someone who is well below the age risk ‘red zone’ and whose platelets although high, were again, not in the ‘red zone’. Obviously I don’t know your particular health profile and whether you might have other health challenges that might compromise your situation. What reasons did your haematologist give for starting the drug treatment?
On the whole, MPN specialists favour a non interventionist approach (other than perhaps daily aspirin) for anyone under 65 and with platelets less than 1500. (With the caveat that everyone is individual and will have a wider health profile. Additionally, the severity of symptoms might indicate the need for drugs.)
Hydroxy can mess with your stomach and make you constipated. Could that be contributing to your stomach swelling? But in general definitely worth getting checked by your GP.
And perhaps reassessment on the medication front? I’d be concerned about being on high dose Hydroxy and not being reviewed regularly by an MPN haematologist. Wishing you well.
That is not an acceptable level of care. You have both a need and the right to know the specifics of your labs. You also have a right to a hard copy of all of your lab results and should request them so you can keep track yourself. The discussion with PV is properly framed in terms of weighing the benefits of cytoreduction to control erythrocytosis vs the risks and adverse effects. You are reporting a possible adverse effect. It is time to review your case with a hematologist to consider whether your treatment plan should be changed, This review would ideally be done with a MPN specialist rather than a regular hematologist.
That’s really an unacceptable level of care. Good care of MPN patients is not simply about taking blood and telling patients over the phone they are OK.
There are too many things that just don’t add up here. You’re young (in MPN terms), your platelet counts are high but not ridiculously so, you say you have PV but no mention of elevated haematocrit levels (which is what you’d expect with PV and for which the front line treatment is usually venesections - where they take blood from you) and you’re on a high dose of Hydroxycarbamide.
Just for context I have PV. I was a decade older than you and my platelets were 1700 and my haematocrit levels were not being stabilised by venesections (and I was feeling complete rubbish) before I went on Hydroxy. And even then the dose was lower than you are currently taking. I’d been ‘stable’ for quite a few years with platelets at around 1100 and just on aspirin (before my haematocrit levels began to climb and I was told I had PV not ET). I was reviewed in clinic every month or so. I’m at Guy’s Hospital under Professor Harrison. Every visit I have my bloods taken, I then see a member of the MPN haematology team. The first question is always ‘How are you feeling?’ (And you get probed!) Reporting on the blood counts comes second (or third!). I get a copy of the results. And there is always a discussion about treatment
So yes, I definitely think you should ask to be referred to an MPN Specialist at another (larger) hospital. You may have to be very assertive and stand your ground but you are entitled to ask to be referred over - and we’re all right behind you! Good luck.
As a medical professional, I can only say that I have to agree with Ebot and Hunter.
One of the main tenants in the treatment of MPN's, [maybe the only one which I have seen supported universally] is the need to work in consensus with well-informed patients.
This is especially true because in the absence of any catastrophic events [the avoidance of which is one of the primary goals of treatment], the course of treatment is typically decades-long.
Further, their statements about treatment of low[er] risk MPN patients [usually defined as age< 60, and without any history of thrombosis [blood clots] being much less aggressive than what you have been prescribed is also spot on.
This is especially true with hydroxyurea, which does not have a benign side-effect profile, the risks of which increasing length of time in the treatment course.
"... patients with low-risk disease (age less than 60 and no prior thrombosis)"
"Current ELN guidelines strongly recommends cytoreductive therapy, with either hydroxyurea or recombinant interferon-alpha, in high-risk patients or those who are unable to tolerate phlebotomy. Hydroxyurea is associated with adverse events, including myelosuppression, oral and leg ulcers, gastrointestinal symptoms, and propensity to develop non-melanomatous skin cancer. Thus alternative agents are employed for high risk patients who require cytoreduction.
I also agree that you need to get seen ASAP by your MD of choice for the enlargement of your abdomen [which is probably a better way of saying what seemed to mean, because identifying it as swelling of the stomach is kind of describing it as a specific organ and diagnosis.
You can ask for copies of letters to your GP to be sent to you. Also, when they phone, you can just ask them to tell you your blood counts. That would be a start. I think that when consultants monitor us, some if them forget that it's not enough just to tell us it's okay - we need some detail. Try to be assertive.
I’m also from Rotherham! I see Dr Taylor at RDGH. Is it the clinical nurses who phone you? You can ask them for advice, I have a number for them if you haven’t, I’ll send it on a private message. They may ask you to see your GP.
Hi, I am also from Rotherham but lived in Leeds when diagnosed for ET Calr with lots of symptoms…I was put on Interferon then moved back to Rotherham in March but I insisted on being under Sheffield to make sure I saw a Heamatologist in the interim as I heard that you don’t really see a Doc in Rotherham. I am 59years old
I don’t see why not, the doc at Sheffield’Dr Francis’ asked me why I wasn’t with rotherham and I said it was as I had heard reports that they never got to see a Doctor so wanted to travel there 🤷♀️
GI issues are pretty common with HU, but you would need to have the abdominal swelling checked out by your care team to determine the cause. Sometimes the timing of when the symptom began is one of the clues as to what the cause is.
As Ebot indicates, most people with PV would not be on HU at age 47. The primary concern for preventing thrombosis is to control erythrocytosis, usually measured with HCT. The common goal for PV treatment is HCT < 45% for males and HCT < 42/43% for females. Many people with PV do also experience thrombocytosis and/or leukocytosis. Thrombocytosis can be a secondary treatment target, but controlling erythrocytosis is the primary target since it is the primary risk for thrombosis in PV.
Most MPN Specialists would start treatment of PV for someone with PV using venesection to control the risks associated with erythrocytosis. HU is usually not initiated until after age 60/65 due to the risks associated with long-term use. The PEGylated interferons are more commonly used in younger patients when cytoreduction is indicated.
None of us are qualified to tell you whether you should be using cytoreduction at this point in time nor which medication is appropriate in your case. This is an issue that needs to be reviewed with a MPN Specialist. Note that many hematologists have little experience with MPNs due to how rare they are. Optimal care is obtained by consulting with a MPN Specialist. Here is a list. mpnforum.com/list-hem./
There is some information about hydroxycarbamide (AKA hydroxyurea) that is helpful to review. It is important to note the handling instructions for this medication.
I can tell you about my experience I am 72 yrs diagnosed 30 months ago ET jak 2mutation had a abdominal scan to start with which confirmed my status because of age given 500gms of hydroxycarbamide 5 days and 1000grams sat sun had had problem s with bloating like I was pregnant really in despair with weight gain ,decided to do research ,put my self on a Mediterranean diet ,walk 4-6 miles everyday as well as being active with shopping a little cleaning job doing things with grandkids results for me is lost 10 lbs ,no chronic tiredness bloating gone dresssize dropped
,never felt better But we are all different I had 4 weekly check ups for a year with hemetologist nurse ,then 9 month phone consultations then I have a face to face August 10th I would say get your tummy checked with GP then if all ok try Mediterranean diet ,but you should also ask to see the Mpn specialist in Manchester ask maz on here for his name as I live in North Wales I think his last name is Somerville hope this helps ask me anything any time I don't do 4-6 miles in a walk it's shopping working housework etc all my bloods stable for over a year now
I have ET and am calr positive. I am 75. I had a blood clot on my lung 20 months ago and was diagnosed shortly after. My platelet count was 1450. I was put on hydroxy 17 months ago one 500mg daily which was increased to 500mg for 4days and 1000mg for 3days. I see a heamatologist every 3 months and have blood tests at the same time. I have not had any bloating although I am careful not to eat too many carbs. my main symptoms have been nausea and tiredness usually in the mornings. I have been satisfied with my treatment because I see the heamatologist in person. I would not be happy if I just had phone calls. I hope you can get the help you want .
Hi Mandz12 has your GP or haematology consultant not sent you for an ultrasound or if you are. Really worried you could ask to be sent to a gastroenterologist consultant to get tests done are you in any pain at all it could be IBS because you have to get it sorted it may not be related to hydroxcarbamide as it seems to be working well but please do somethingStay safe
My brother has been in receipt of dismal care and developed ascites and looked 9 months pregnant with triplets. He is only 48 and has PV. We sought a referral to an MPN specialist. Not all haematology teams are the same, unfortunately, and in fact, his care team told me catagorically that PV wasn't a form of blood cancer. Good luck with everything.
Hi Mandz12 and Deka alsoMy GP did not have me down as having a blood cancer so I wrote to (Bloodwise) now called Blood Cancer UK, who sent me an email to forward to my GP saying that the World Health Organisation re-categorised MPNs from being called blood disorders to being cancers in 2008. Hopevthis clarifies this for you.
Is it your stomach that’s swollen or possibly your spleen? An enlarged spleen is not uncommon with PV. My husband has PV, jak2, and his spleen is double the normal size. It gives him a swollen look. I’d get it checked out to know for sure. Good luck
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