MPN Voice

Newly diagnosed and curious

Hello everyone,

Had Jak2 test in March and searching for information led me to this forum. Saw consultant in middle of June and he told me I was Jak2 positive and had PV. Have had 3 venesections since then and due to see consultant again this week. I'm 59, have previously had a heart attack (2004) and am waiting for results of an MRI scan because of a gallbladder/liver problem (probably needs an op to fix). Was diagnosed with atypical migraine end of 2000. Some questions I wonder if people can answer if they have any similar experience.

1. Could the heart attack, atypical migraine be related in any way to this condition, even if it's only just been diagnosed. Remember the cardiologist telling me I had sticky blood.

2. Since beginning of last year, have suffered a lot from bloating, developed an intolerance to rice and suffered from heartburn. Not seen much about those kind of things. Has anyone else had anything similar to that.

3. Do you folks keep a written record of blood test results and are you comfortable asking your consultant about it. (Don't want to waste a busy person's time asking things unnecessarily).

4. Anyone had an operation with this condition? If so, did things have to be done differently because of this condition?

Thanks for taking the time to read this and for any advice anyone can give.

Hope everyone is doing well :-)

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Hi Lizk1993, welcome to our friendly and informative forum.I'm sure one of our PV members will be able to advise you.

I can give some input on question 3 though. Since my diagnosis of ET I have asked for all print outs of my blood tests. I ask my GPs receptionist for these at my own convenience.

Good Luck

Mary x

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Hello Mary and thanks for your answer. Will ask at my GP surgery next time I'm there. x

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Welcome to the club! I am 50 yrs old and 10 years into diagnosis. As far as surgeries-I've had my share! The only thing is I have to stop my aspirin 7 days prior. I, too, keep a record of labs-on volume 2 in my binders! I also enter them on a spreadsheet. I always ask my dr any questions I may have. I cannot answer #1 or #2, sorry. This site is a great resource as well as moral support. I wish you luck and health!

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Hi Becky and thanks for answering. I used to be a computing teacher, so I'll be able to set up a spreadsheet (great idea) once I know what figures I need to keep track of.

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Hi, as I understand it:

1. yes, I think both conditions could be linked to MPN: we have higher risk for thrombolitic (blood clot) events incl stroke, due to thicker blood and abnormal blood cells aka "sticky blood"

2. heartburn: r u on aspirin? If so see other threads about enteric coated aspirin

3. Yes absolutely I ALWAYS record platelets, red, whites, HCT: I take my diary in to the consultation with me and the consultant reads the results out to me. How can u have a sensible discussion about whether u need venesection or level of drugs unless u have this data? You will see patterns over time and be more knowledgeable about your treatment and condition.

4. I was admitted with gall stone problems but managed by diet despite surgeon wanting to operate: worth avoiding ops if u can as slightly higher risk. Op was planned however, with input from haematologist and GP e.g.: heparin to reduce likelihood of blood clots, when to start/stop MPN drugs, blood test on morning of op rather than 2+ weeks before if your blood counts unstable

Good luck

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Hi Jane, thanks for answering all my questions. No 4 is the one worrying me most as I don't think I'll have the option of not having anything done. Have a rapidly growing polyp on gallbladder which might be cancerous, the size of it suggests it is, or at least pre cancerous. Waiting anxiously to hear results of MRI. Patience isn't my strong point, but I think I'm probably going to have to learn to be. Have been taking aspirin for 13 years now and never had stomach problems before.

Having read yours and other folks replies, will definitely start asking for and recording the numbers.

I asked question 1, mainly because I thought it would probably be a bit of stretch to blame PV for heart attack and migraine, given the length of time they've been a problem and that I've only just been diagnosed. My bloods have been monitored since I had heart attack, and until this year, they only caused concern once and that was three years ago, so that was more curiosity than anything, to see if anyone else had similar experience.

Thanks again.

Liz x

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Hi lizk, welcome to the forum. I believe I've read on the forum that some heart attacks have been linked to blood clots from MPN's and the same with some types of migraines. If you search old postings you might find them. Many of us have good reason to believe our mpn began years before diagnosis. I had a tia 5 years before my diagnosis which my doc now believes was because of my mpn. Sorry but I can't help with question 2. Keeping copies of labs is very important. Specialists sometimes rely on "the pattern" to assess stability or progression of the cancer. And absolutely you should ask questions if you have them. Answering your questions is part of what your doctor gets paid to do and it's a really important part of her/his job. I've had 3 surgeries since going onto blood thinners and HU but I have ET jak2+. It wasn't a problem but you must make sure your docs accommodate your need to be returned to blood thinners asap. And to be "bridged" w/ Lovenox while off. Don't recall if HU had to be stopped. But my guess is that with PV the issues may be very different. Hope this helped. Good luck. Katie

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Hi Katie,

Really appreciate you answering and glad that you've come through 3 surgeries without problems. That makes me feel a bit better (had read something somewhere that PV patients had to be in intensive care afterwards and that did have me thinking 'crikey' (or less subtle words). Have appointment at haematology tomorrow, so fingers crossed, all the numbers will be fine.

Thanks again

Liz x

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Hi. It's great hearing you sounding much more confident and comfortable about things today. The forum is such a huge help for all of us!! Please remember that I said things might be different for PV patients having surgery. I've been intensive care. It was when I almost died from blood clots that filled both lungs--which led to my diagnosis--and it's not at all a bad or unpleasant place to be. Take care, Katie

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Hi Liz, welcome to the most amazing forum for advice regarding your condition. I, too, have PV Jak2+.

In answer to question 1, it is very possible that the heart attack was due to your condition as sufferers are more prone to blood clots, hence they are usually prescribed daily aspirin, or as in my case warfarin.

Question 2. I certainly have to make sure I have a big box of Rennies on my nightstand. Someone did recently post about this if you do a search.

Question 3. A lot of people ask for a printout of their blood test results and the consultants are happy to oblige, or even carry a note book and ask them for the credits so you can keep track.

I cannot help with question 4 but your consultant will be sure to steer you right if you are going to need surgery.

Please keep coming back as this site has helped me no end of times. I searched for all kinds of info and got some very scary answers until I found the people on here who are going through the same thing and speak through experience. The MacMillan Cancer site also has good medical info but is not as personal as this forum.

Best wishes

Jill x

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Hi Jill, thanks for answering and the welcome. I do keep indigestion tablets beside my bed. And after the advice given here am going to ask for and keep notes of all the numbers so i can see whats happening with me.

Nervous for tomorrow's visit to haematology, but will deal with whatever comes then.

Thanks again

Liz x

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Hi LIzK, welcome to our forum, I can see that the lovely people on here have replied to your questions so there isn't really anything I can add, except to say have a look at our website mpnvoice.org.uk which has lots of very useful information on it, and if you would like any of the information booklets please email me at maz.cd@mpnvoice.org.uk best wishes, Maz

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Hi Maz, and thanks. Been lurking on the forum since I found it and have seen how good folk are at helping out with questions folk had. That was what made be brave enough to post. Have been on MPN voice (and so many others) already. Got brain fog with all that info, but think I've got the basics. Have to go now, here's my daughter and grandchildren arriving.

Best wishes

Liz

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I am given a print out of my blood results to take with me to the hospital pharmacist for my prescription for Anagrelide. I always take a photo of this on my phone and put the results on a spreadsheet when I get home, then I can look back and see what (if anything) has changed.

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Hi there Lizzie? and thanks for the response. Have definitely got the idea now that it makes sense to keep my own record of what's going on in my blood and I'm going to do just that.

Thanks again

Liz x

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