appointment with consultant today - thoughts?!

[Carthe]

Hi I had an appointment today with one of the consultants that work with Claire Harrison - he was great…. during the appointment he said some people sit in the ‘upper end of normal’ and I could be one of those people or I could have an MPN. The issue is the test comes back negative then do they start testing me for ‘other’ cancers - I read somewhere that having a high platelet count is just like having a lump in your breast it’s a sure sign of cancer…. He also said that there is no link between stress and the increase of platelets. Would welcome your thoughts thank you

[Otterfield]

A high platelet count is NOT a sure sign of cancer. Incidentally, neither is a breast lump - there are plenty of benign lumps, although it is terrifying to find one. It's true that high platelets can occur with some cancers but yours are, you say, "upper end of normal." It's would be best to focus on the word "normal" until you have test results. Any of us can get cancer of any kind but can help ourselves by checking our breasts, our poo and our skin, as well as keeping up to date with cervical smears. We have to find a way to live with uncertainty and perhaps you need help with that. I have nights when I lie awake worrying, either about myself or about my husband.

[Carthe in reply to Otterfield]

I’m just confused I don’t understand - he did say there seems to be ‘common’ maybe that’s the wrong word, but women of my age can have platelets they are high and they don’t find the reason… I don’t know - I’m just panicking something is seriously wrong … sadly we are supposed to be going to Florida with the kids over easter for a family holiday of a lifetime and this has ruined it and i don’t want to go… I’m not saying this for sympathy it’s just how I feel x

[Mirror368 in reply to Carthe]

So happy you were able to see a consultant of Prof. Harrison. The fact that you are close to normal seems very positive. I had a BMP last year and found it very easy. Maybe you could ask your GP for a relaxing medication. Try to put this out of your mind and enjoy your family vacation.

[Carthe in reply to Mirror368]

thank you for your kind words.. I’ll try… x

[UKZA in reply to Carthe]

Please remember that whilst you may not be in control of your diagnosis, you are in charge of your reaction to it. Please try to find joy in every moment and go and have that holiday and make memories with your family. I do hope for your sake that you do not lose yourself in a diagnosis. Take care and all the best

[SarahPV in reply to UKZA]

I echo all of the above. Do try and enjoy your holiday for your family and yourself. Happy memories need to be made! And just imagine that Florida sun. How wonderful will that be to feel on your face?! Xx

[Oscarsboy in reply to Carthe]

I have ETJAK2 diagnosed nearly 3 years ago and on treatment. I too got very stressed initially which did not help my condition at all. However as others advise, please please go and enjoy your wonderful holiday with your family. I have been very fortunate to be able to travel/cruise since with no issues at all and are now planning our Golden Wedding trip in December. I saw professor Harrison once and am now under the care of my hospital haemo unit for three monthly monitoring. Ive also had a BMB which confirmed my diagnosis and it was nowhere near as daunting as i feared. Please keep positive go and have a wonderful time in Florida. Every blessing.

[Wyebird in reply to Carthe]

just read about regarding your holiday. It is a lifetime one. It’s one you want to enjoy.

I wasted the first 3 years trying to cope with coming to terms with this illness and trying to fight it.

Don’t do what I did please.

Tell yourself you are going out there for an amazing holiday.

The kids will remember it with a passion!!

I should imagine your health insurance is in place but I believe you must inform them of a change of health conditions.

You are with the best.

[Mirror368]

So what is your decided path….follow up with BMP/labs or just watch and wait with labs?

[Carthe in reply to Mirror368]

still waiting for genetic tests and then I’ll see if they are neg he wants me to have a bmb - I don’t want one! If it’s positive I have no idea - asprin?

[Mostew]

Please try to relax . Put your mind to finding ways to cope with uncertainty. So that you can enjoy the good things .

[hunter5582]

Glad to hear that you consulted with a MPN specialist. That will help you get a clear diagnosis. There certainly are people who just run a high end of normal on PLTs. Then it only takes a minor event to elevate above 450K

There are a wide variety of reason people experience reactive thrombocytosis. You will likely hear mixed response to the question about stress and reactive thrombocytosis. There is evidence in the literature that it can occur, but not for everyone. You will hear from some on the forum that they do experience PLT elevation when they are stressed. While stress may be part of the picture in regards to your PLT levels, suggest that the influence it has on your PLT levels is less significant than the other damage it does to your mind and body.

I have had ET for 30+ years. It progressed to PV 9 years ago. I had a period of time back in 2013 with a different series of health issues that triggered major anxiety. I did not handle it well, making myself progressively more miserable. I swore "never again" and changed how I manage stress. The last several years have been quite interesting healthwise. I had four surgeries between 2018 - 2020, including heart (atrial tachycardia) and brain surgery (brain tumor). I would have been a basket case had I not changed how I manage stress.

One of the most important stress management techniques is to have fun. I find a way to have fun every day. I do not let PV get in the way of doing anything I want to do. I love to travel and do so whenever possible. I went on a wonderful cruise in the Mediterranean last Summer.

Even if you do have ET, it is no reason to ruin a wonderful Holiday with your family. Those moments are to be embraced cherished. Suggest that 30 years from now, you and your children can share stories with your grandchildren about your many adventures.

Wishing you all the best.

[Carthe in reply to hunter5582]

thanks Hunter given your knowledge are you able to through any light on the different ranges for the platelets is it 400 or 450 and why is if different for different labs ?

[hunter5582 in reply to Carthe]

The reference range varies between labs even more widely than that. My hematology office lab uses 163 - 369 as the reference range for PLT.

"Reference ranges for the same methods or instruments may differ between laboratories and geographic areas for the following reasons: Operating conditions are different. Criteria for selection of healthy subjects are different. Patient populations are different. Geographic areas have different temperatures, altitudes, barometric pressures, humidities, and time zones. Subject preparation and sample collection may differ." clinlabnavigator.com/refere....

I do not worry about why the reference ranges vary or why sometimes they change over time even at the same lab. What really matters most is the accepted values we use for diagnosis and treatment goals. What matters for platelets diagnostically is PLT > 450.

All the best.

[Carthe in reply to hunter5582]

thanks Hunter and so you have and tried and tested ways to naturally reduce them?

[hunter5582 in reply to Carthe]

I have not tried any "natural" methods to reduce platelet levels per se. I have never seen any evidence that there are effective natural agents to reduce thrombocytosis. I have used several supplements to reduce inflammation, which may have an indirect impact on platelet levels. I have found curcumin to be the most effective agent. I also use L-Glutathione and a proresolving mediator ((SPM Active). Reducing systemic inflammation is an important part of managing MPNs and also significantly improves quality of life.

I would also note that despite the disagreement about stress increasing thrombocytosis, i do believe that the mind-body connection is quite powerful. Stress/anxiety has many negative effects on the body. Managing stress effectively is an extremely important part of maintaining health and quality of life.

All the best.

[Carthe in reply to hunter5582]

hi hunter just reading through this again. Where did you get the supplements from? Are there any particular ones you recommend? Thank you

[hunter5582 in reply to Carthe]

I get supplements from several different sources. My primary source is through my Integrative/Functional Medicine doctor who keeps them in stock. There are two US-based online pharmacies she prescribes from at well. fullscript.com/ and wholescripts.com/ . I would imagine there is something similar in the UK.

The one exception is the turmeric/curcumin I use. My doc recommends a formulation called CurcuWIN, which is a liposomal formulation found in a number of different brands. I use the Spring Valley brand, which is commercially available here in the USA.

The issue with supplements is that they are not as well regulated as conventional medications. Suggest consulting with a knowledgeable professional about what is available in the UK.

[Carthe in reply to hunter5582]

thanks good food for thought I’ll start researching !

[Solyesh]

Good that you are in the hands of an MPN specialist. Definitely take a deep breath and enjoy the upcoming vacation with the kids..even if you aren't there mentally you might be able to enjoy seeing their joy! It sounds, to my unprofessional ears, that you need clarity...the stress and anxiety can do a number on you..I would push for definitive answers - see what the genetic tests come back as but if it were me I would push for a BMB for definitive answers as well. The BMB, for me, was not pleasant but it is doable and it does provide some ver definitive answers. I would take the very brief and almost immediately over discomfort from the BMB than the ongoing anxiety caused by a non-definitive diagnosis. Good luck!

[Blonde25]

kI really hope you go with your family for that well earned holiday .

I was worried sick for months when I knew my red blood cells were high and I was not getting any where with my GP so I paid to see a private consultant to eventually be fast tracked through to the NHS for a BMB . I have PV and they said I could have had the symptoms for 8 years .It's a worry when you are in the unknown , Please go on how you feel physically and keep doing all the things you enjoy .Good luck and don't let this stop you enjoying your life

[Delightedbyhares]

Hi Carthe. My platelets have jumped around between the higher end of 600 (still pretty low in the grand scheme of things)and the last test 3 months ago,was in the normal range. I’m on daily Aspirin and triple negative ET was diagnosed by a bone marrow biopsy (unpleasant to say the least, but useful to get a more complete picture) The saying that you are more likely to die WITH ET than FROM ET is well worth remembering. Try not to get too bogged down in the details of our confusing and complex condition. It’s important to try and keep site of the bigger picture- unless your ET progresses radically, you can rumble on for many years to come, living a pretty normal life!!

Yes, it’s a cancer but cancer with a small ‘c’ not a capital ’C’ as Hunter and many others have commented in the past.

Your holiday plans sound amazing- go and enjoy it!! Use it as a way to push the reset button, I know it’s really difficult to do but, try and push your diagnosis to the back of your mind. It’ll still be there when you get back!

Wishing you all the best.

[Alicay]

I just had a BMB, very similar situation to you with the platelet levels. I was sedated - ie asleep for the procedure. So it was more than fine. Just ask about sedation, wish I had - would have saved a lot of angst.

[Carthe in reply to Alicay]

thanks for replying have you had your results yet??

[Delightedbyhares in reply to Alicay]

How did you manage to get sedation??! I was told it wasn’t possible. Had to make do with gas and air. 1/4 of the way through, the mouth piece became detached from the cylinder. no one noticed for some time!! OWWWW! 🥺😢

[Carthe]

don’t they numb the area?

[Delightedbyhares in reply to Carthe]

Oh yes, they do numb the area really well. Just my luck that a 1/10000 mishap should happen to me! I also have Fibromyalgia, a chronic pain condition so, they said that’s why I found the procedure and recovery so difficult. I’m positive that nothing like that ever happens to other people!!🤣🙄

[Delightedbyhares in reply to Delightedbyhares]

I also found getting onto the bed and remaining in a tucked position painful too, so please don’t let my “one off” experience put you off having the test done so that you can get the results you need!!X

[Alicay]

no results yet. Got the sedation at a private hospital - had to fight insurer tooth and nail tho

[Carthe in reply to Alicay]

ouch let me know how you get on? How long do you normally have to wait!? Have you got any symptoms of anything?

[Delightedbyhares in reply to Alicay]

Aaah, I see. Good plan !!

[Wyebird]

my thoughts are you are with an amazing team so try and relax. After each clinic they have a team meeting.

I count myself extra ordinarily lucky to also be under the Prof.

[Janis12]

Hi, it is hard to imagine oneself enjoying anything when you are consumed with worry and anxiety and the uncertainty of your current situation will just magnify this. I have had ET for three years now, pretty much experienced the same 'freak out' as yourself until I could gather enough energy to return to my normal life of exercise, the only thing that keeps me calm. A recent hospital appointment this week identified that my platelet levels have increased to 600 despite the meds, that was yesterday, freak out!! This morning I somehow managed to get up, get ready and go out on my bike....30 miles later, freak out gone and now have stuff back into prospective. Go and have your wonderful holiday, you will kick yourself if you don't. Enjoy