Sorry me again
Am really struggling feel scared upset angry worried about the future all I keep thinking Is I have cancer and that am more likely to get other cancers. I dont know what I should be doing just get on with it?? I have bone marrow biopsy this week worried about the procedure and results haemo said it's to confirm et but I worry they suspect mf or lukemia. I worry I will have a stroke. Prior to this diagnosis health anxiety and depression
I have had anxiety and depression prior to diagnosis and more than 20 years. I have the same fears as you do. I have been doing psychotherapy many years,but more intense the last one. I worry about all health issues as far as i can remember,so it is obvious that i have health anxiety. This is what i am working and focus on. I can totally understand you,and i am more sad that others have the same fears as me. I give you a link about health anxiety,that is a tool with exercises. I find it interesting and i tend to worry a little bit less when i "see" myself in these norms.
It doesn't make miracles,but it worths read it and think on provided tasks.
cci.health.wa.gov.au/resour...
Just go to section "workbook"
Thank u
Hi. We all respond in different ways emotionally to having a diagnosis of an MPN - no one can tell you how to feel , or what not to feel. What does seem to help most people in dealing with any kind of distress or fear is to spell it out - either by writing it down in detail once a day ( journalling) or by speaking it out aloud to another human being. I just did that with some concerns of my own, about deciding on a place to live and I feel calmer now.
Realistically, until you’ve had the BMB , a complete diagnosis and a treatment plan you don’t know what it is that you are facing: so you can’t work out what the impact might be on your future life.
In all likelihood - not much, for quite a while. But whatever does happen, you can share it on this site with people who have had the same happen to them.
Lots of love. Rachel
This is why am confused haematologist told me I have et bone marrow to confirm treatment aspirin for now
Hi Irishgal, remember an MPN is NOT a death sentence. There are many people in this forum who have had ET for years and are still around. As far as I’m aware with PV or ET, as long as your condition is monitored and treated as necessary, the life expectancy is normal.
You are going through the worst time just now! Your world has been turned upside down, your scared, terrified, worried sick - I’ve been there and so have many others on this forum. It’s a really tough time when you’re waiting for results, getting more tests, waiting for results. It’s like being on a Merry Go Round. I wrote a poem once called the MPN Merry go Round which explains how i felt on my journey. Other folk seemed to identify with it , see if you can find it. If not, I’ll send it to you.
Have a chat with your gp. It’s worth getting their help. Google “mood gym”which gives self help cognitive support. I do (and many others do) understand exactly what you’re going through. It will get easier as you find out more about your condition and it will settle down into a “routine.” Please don’t despair, I’m here for you plus all the other friends you have on this forum - you might not know them personally but they’re there.
Keep in touch, kindest regards and E hugs
Aime xx😻😻
Thank u so much I hope it gets easier xx
Hi Aime,
I'd love to read the poem you wrote about merry go round,perhaps you'd post it for me please.
thanks
Phyllis x
Hi Phyllis, if you type “MPN Merry Go Round” into search box at top right, it will come up with the post and you just need to click on it. Any problems let me know. Kindest regards Aime xx😻😻
Hi Aime.
Such a good post with kind and understanding words as usual.
How are you keeping ? I hope you have escaped the lurgi that we have enjoyed !!!!!!again this winter. Hoping for some blue skies soon.
Love Sandy xx
Hi Sandy, thank you. I'm fine thank you. My osteoarthritis is giving me more problems than my blood! Looking forward to spring. How ru?xx kindest regards Aime xx😻😻
Hi Amie.
Sorry to hear of your ongoing pain re your osteoarthritis . My partner is groaning on bending moving etc. This weather is just the worst for you.
My mum who lives in Florida , rarely gets pain with hers. So maybe warmth and sunshine is the way to go !
As you say roll on Spring , saw a huge patch of snowdrops this week, so we are working towards it.....hopefully . 🌤☀️.
I’m good thank you , seem to have got to grips with my anaemia , which has made a huge difference to how I feel.
I hope the hospital is dealing well with your updated diagnosis , and you are doing well.
Take care. Regards Sandy xx
Hi Sandy, glad your anaemia is sorted out. I’m quite anaemic just now too and no reasons discovered so far. Just watching and waiting, if it doesn’t improve, I’ll be seeking another second opinion.
Been recently diagnosed with Sjögren’s syndrome which causes dry eyes, mouth, etc plus itching. Going to see gp on Friday to discuss any implications but I’m not particularly concerned as my joints are the biggest pain which can be a symptom of Sjögren’s too just to complicate matters! But in good spirits with these monkeys of grandkids xx😻😻kindest regards Aime
Me again Aime. I’m sorry to hear of your additional diagnosis , another thing for you to deal with, poor you.
Keeping yourself hydrated inside and out is quite a task. I use a product called Eucerin, shower .I find it good for moisturising in the shower , it’s an oil type product that you use in place of gels etc. I have dry eyes and use my dry eye drops many times a day.
The difference I feel having higher heamaglobin is amazing. I do understand how exhausted you feel when you are anaemic . You can’t fight against it just have to rest and sleep. I hope you can get it sorted soon, those grandchildren require a lot of energy keeping up with .But always fun. Grannies are very special .
Do hope you feel more comfortable soon.
Sandy xx
Hi Sandy and Amie,
I have dry eyes. I went to the eye hospital last November, diagnosed with Marginal Keratitis. I was given steroid drops and also an eye ointment to use for one month at night. I have found the ointment so good that I bought it off prescription and now use it two or three times per week and it really helps. You have to put it in right before sleep as it really does blur vision. I find I don’t need drops through the day as much. It’s VitA-POS eye ointment with vitamin A. It says it’s for improvement of the year film and protection of the ocular surface . Might be worth a try.
Love to you both
Judy xx
Thank you Judy.
I have tried many but not heard of that one. I will take a look in Boots . Always trying to find one that works . Great to get a recommendation .
Hope all is well with you, and also hope to meet you soon.
Love Sandy. x
Yes not too bad thanks Sandy. You need to ask for it as it’s behind the counter. A yellow and white box. X
Thanks Sandy, will try the shower gel. That's great your haemaglobin is up, I know it makes a huge difference. Xx just back from my gp so hes emailed rheumatologist to ask if he should be doing more blood tests, so I'm hoping I dont have another appointment to go to. If I have, I'll just go with the flow!! You take care.Aime xx😻😻
Sandy, I meant to say have you got a hydrotherapy pool close that your partner could go to? It makes an enormous difference to my sore joints. My skin doesn’t like the heat but the joint pain gets the priority. Kindest regards Aime xx😻😻
I’m so sorry Aime that I didn’t respond to you earlier, It has been somewhat manic here the last week or two.
Thank you that is a good suggestion, we hadn’t thought of that , I will talk to him about it and find out if we have access to a pool.
He tried the patches that you stick on. He put it on his shoulder it appeared to help the arthritic joint as it keeps warm for a while.
I hope now we have some drier weather that all who suffer with joint pain , get some relief.
Best wishes Sandy xx
Diagnosed in 2005 at 52, with ET and alternating taking 1000/500 Hydrea and asperin. Not a pleasure living with this cancerAlways have joint pain, my spleen is always killing me, I sweat profusely at the slightest effort. And the fatigue and dizzy spells is terrible. Always feel like I ran a marathon
Am now 68 years old and some days just feel like quiting.
Hi Irishgal, if you put MPN Merry go round into the search box at the top, it will pop up. Aime xx😻😻
Brilliant poem
I read your marrow bones is cancer in our bones?
Hi, we have bone marrow in our bones which as I understand it produces blood cells. It doesn't mean our actual bones are cancerous. Look at the mon voice website for a proper explanation. Yes its classed as a cancer but one which is so less active than othercancers. Please stop panicking as I think you are more likely to be involved in a car crash than for your condition to develop into something nasty. Someone one described it to me as football divisions. Division 1 is for cancers like breast, bowel, etc, the very bottom division in the league is where an mpn would be. Please try and put it in perspective as you will make yourself ill worrying. Please go and see your GP. I dont like taking meds but I ended up on sertraline anti anxiety tablets which were enough to calm my fears so I could think rationally. You have already received some fantastic support on this forum. This will continue, trust me. The best thing I ever did on diagnosis was join this forum. Lovely people have up their time to help a stranger and they will continue to support you. You are not alone! Kindest regards and E hugs Aime xx😻😻
Thank u am on medication for anxiety already u know if it wasnt a cancer I'd be fine
But its classed as a cancer now, as someone else has said, it wasn't a few years ago. In that time, the disease hasn't changed, only its name. Ask Maz, our editor, for a buddy who will have the same mpn as you and you can speak to them in person. Keep posting too and these lovely people will help you. Never say sorry about posting, that's what the forum is for! Honestly I've been diagnosed since 2012 and nothing has progressed and others have had their disease for an awful lot longer and they are still here.xx Aime 😻😻
Technically the issue is with hemopoietic stem cells. These cells circulate in the blood and reside in the bone marrow. These are the cells that make all types of blood cells - erythrocytes (red), leukocytes (white), and platelets. My old hemo-doc called these 'Mother Cells." The MPN is caused when these cells no longer function normally. Essentially the "on" switch is always "on" and they are cranking out too many of the derivative blood cells - hence a Myeloproliferative Neoplasm (aka Too Many Blood Cells). This is a process that is regulated by the JAK-STAT pathway. The JAK-STAT pathway is one of the boy's kinase systems. It regulates a lot of things besides blood cell production, such as inflammation. It is very complex and the understanding of it is still emerging.
Hope that helps.
I understand the stress you are going through and it gets worse the more you worry. That word cancer is frightening but remember 10 years ago we would have been diagnosed with a blood condition and not cancer. They grouped our condition into the cancer group which is a good thing because it has lots of funding now. Don’t think of that C word and you will find it easier to deal with it. We are lucky that we can lead normal lives and we are followed up by the health authorities and are given drugs to ensure that we stay safe which is more than I can say for the average person walking down the street who is not checked regularly and can be at risk of heart attack or stroke more than we are. Try to stay positive and take comfort in the fact that we are all here to help each other and lots of love and big hugs to you XX
Very true thank u x
To deal with the Bone Marrow Biopsy. This is an absolutely standard procedure which comes as part and parcel of the suite of diagnostic tools haematologists use around MPNs. Nothing dramatic or unusual about it. Bog standard practice.
The BMB gives a benchmark. This is particularly important as you are young. It allows your haematology team to monitor the disease if necessary. It also gives a more detailed picture of the disease. So, definitely something worth doing.
As to the procedure. Pretty straightforward. I think you said you are a nurse so you’ll probably have a better understanding than most. Does it hurt? You’ve had a baby. We’re not talking labour here! Uncomfortable mostly. Short lived. You get up and walk out! A couple of paracetamol should resolve any residual discomfort. (Oh, and don’t bash injection site on side of car seat en route home!!! 😬🤣).
I can’t tell you not to worry! But I hope the above is helpful.
Thank u. When u say gives them a detailed picture of disease is there different levels if et?
With an MPN every patient is unique. A BMB biopsy simply gives a better insight in to what your particular cells are up to on the day the sample was taken. It gives a level of detail not possible from a simple blood test. But then given your background, I’m sure your biology is a lot better than mine! I guess it’s a bit like an archaeologist digging down rather than simply relying on a geophys survey.
It will not give you an answer to the question ‘Will my disease progress?’ Or ‘Will I one day get leukaemia?’ No more than it will give you the answer to ‘Will I get run over by a bus tomorrow?’
MPNs are cancers with a very small ‘c’. The neoplasm simply refers to changes in the cell. It wasn’t very long ago that MPNs were MPDs - disorders - and the big C was never mentioned.
The really important thing is that you get your head together on this (I think you agree!). You’ve had lots of good advice. The one thing everyone will acknowledge is that stress and anxiety while understandable - and who hasn’t experienced it especially around diagnosis - is not desirable. So please, make that your focus. It will help you far more than angsting after certainty in a very uncertain world.
As ever,
Good morning from Fleetwood England.
It is quiet natural to feel like this at first.
Your team of specialist doctors will put you at ease.
Follow their advice. Once you are diagnosed then your treatment will begin. By now you will have read lots of individual stories on here. Your condition will be managed and you will find yourself medication to suite you.
We are all individual. It can be very frightening at first. I remember how I felt.
I have had ET for three years, my levels were 1500 with treatment I am now 360.
I have three monthly checks, I am on hydroxicarbinide, two per day.
I am on baby aspirin.
My symptoms were migraine and odd skin rashes.
I was diagnosed from a routine blood test.
No bone marrow test.
I go on holidays abroad, do keep fit and drink three litres of water a day.
Stress is a big issue for most people, mindfulness helps.
There are a lot of ifs and buts.
I strongly recommend you don't doctors goggle.
The main thing is to listen to your team, take some one with you to your appointments .
This is a condition that is managed and has good outcomes.
Sir effects are rare, you will adapt and you are not alone.
At the moment treatment is aspirin
He said after bmb he prob review me every 3 month but he wont give me any details on if I will progress
Have a look at the Macmillan Cancer Support website. There is lots of useful information about deal with a new diagnosis and contact details if you need to speak to somebody. Also ask at the hospital for details of any local support services that you can use.
Asked at hosp they said it's just cbt which I had years ago not useful for me. I will contact Macmillan just struggling to do so as I cant accept its can6
Cancer
Have a look at the Macmillan website first. There is a lot of good stuff there that you will find useful.
Remember cancer is just a word used to describe a range of different conditions. In the past people associated cancer with the end of life - often in hushed tones and a worried face - but that is no longer the case.
Arm yourself with information not fear.
CBT is not right for everyone. I was thinking about a local support group or befriending service.
Have you asked Maz about finding an MPN buddy?
Came across some useful information and advice about anxiety on the cancer research uk website. It has a link to finding a counsellor that might be useful.
With regard to the BMB explain to the nurses that you are very anxious and make sure you have gas and air available. You might not need it, everyone's different, but it will make you feel very relaxed - a bit like being drunk. The important thing is to make sure you are shown how to use the gas valve properly before the procedure starts. Its can be hard to take things in if you are in pain.
I'm sorry you are still very anxious. Have you been assigned a specialist nurse? if so, have a talk to her about your concerns. I can understand you're nervous about the bone marrow biopsy. One hasn't been mentioned to me yet but it can be a bit painful. Take someone with you.
I don't think you have leukaemia, they would have picked this up.
I've been feeling a bit tired and down last couple of days, which could be my ET or my age or propensity to depression. I have my 3rd hospital appointment on Friday so I will be asking questions.
Hope this has helped a bit. I'm sure everything will turn out well. Take care, Cassie x
Still waiting for bcr results but he said unlikely to be lukemia. Hope u feel better soon xx
Thank you. Just been on a nice sunny but cold walk with my dog. Feel brighter now xx
Hello irishgal12, I am sorry to read you are struggling. I have had ET for over 20 years, diagnosed when I was 37. I find when I am anxious it helps not to look too far ahead, just do or get through the next hour or even the next ten minutes without thinking beyond that. It is not an easy time, breathe take some really deep breaths, hope you find some peace of mind soon. Reading the responses above you have been given some coping mechanisms, good luck
Has yours ever progressed during this time
No it has not progressed , I have had ups and downs with the medication, fatigue and incidents of skin cancer but so far no progression. Hope this reassures you
I read about someone on the mpn fb page who had clots and there were only 39
Hi Irishgal,
Calm down! It's not cancer like cancer that gets hold of organs and eats them up, then spreads to other organs. It's called cancer, but it's really just blood cells behaving badly. They can't spread their naughtiness to other organs (so I've been told) and you can't pass the condition on to your children. I'm really surprised that your team have not given you the information you need. You are clearly in the dark and having nightmares. If there were any real worries, I feel the hospital would have had you in for tests already and not kept you waiting for months, and leukhaemia could be down the line for any of us but there aren't many people these days who get that diagnosis from the start. Does your family know you are feeling like this? You do need to trust your colleagues to do the right thing by you and if you are not happy, you can ask for a second opinion - in fact, if you are put on medication, it is recommended. Cheer up, the sun is putting in a longer appearance!
XX MAGGIE
Thank u to be fair my haematologist did explain all this I just cant deal with the the uncertainty of progression lukemia etc x
If this ever happens it would be a long way down the line x
Am only 32
You have many years ahead of you. Enjoy!
Im 31, just had mixed results of jak2 pos from one lab and neg from other, lol, i have put my mind together to run tests again , haemo might run bmb later, ive had high platelets without symptoms since 5 months they suspect ET but coyld b jak2 pos or neg i dont think its makes a big diff but jak2 positive is more risky to clots n thrombosis maybe im on daily aspirin like u daily , i ws told if they go abv 1000 il habe to take the chemo meds maybe hydroxy , theres no cure for this and nobody can calculate or predict future or the progresion or transformation , u could b low risk and jept on wait n watch strategy .... good luck with it even im strugling to absorb as to how could this hapen to me being young though i just had a bit overstressed life mentally but still maybe stress could have triggered it cuz stress causes inflamation and infalamation could cause rise in platelets even if ur normal but ur subconcious mind is stress this could b one reason but this is just my logic , nobody knows what causes it and nobody knows how it can be cured , there are just meds to try for treatments ....the C word is devastating nodoubt but what can we do about it , life has to move on
Stress could cause it interesting am always stressed. I didn't know you could have et if not positive for jak2 x
My heam told me that odds fot ET to proogress to leukemia is the same as health people
All of life is uncertain. I have been in situations since diagnosis when I've had to stop and think - it would have been ironic not to bother with a mammogram only to have breast cancer kill me much sooner than ET (I didn't know it was called ET then) and to be driving my car while tired and putting myself in danger of a crash. And those are just situations within my control. It doesn't take into account real accidents or even terrorist activity. What I don't understand is how my condition will kill me, or even if it will!
Yes exactly so much unknown about et so that worries me.
Just try to get on with life, there,are worse conditions to have. I had breast cancer in 2003 but have been clear ever since. I am 68. X
Have you been given a "risk level"? Mine is low.
Just not sure how quickly platelets increase to needing chemo
I think we have to be feeling really ill before they even consider chemo! I know you are about half my age but if we are both low risk, we can surely expect any progression to be really slow. I would think that by the time it progresses (if it does) to anything more severe, there will be some marvelous treatments or even cures available to you, if not to me.
It's only a low dose I understand, to get rid of excess ones. Don't think you'll need it.
Hi Irishgal .
I under stand your health anxiety. No matter what anyone says to you the anxiety, is always there. I used to be the same, whenever I had an ache or pain. I immediately thought it was terminal. I could not think rationally.
It took me many years to gradually stop the intense fear that flowed over me at times. This fear impinges on your daily life and enjoyment of all the pleasures that are there to be enjoyed daily, however small, children’s laughter for example always make me happy.
As years go by I have lost family members , close friends, all ages, some much younger than me, of various causes, I’m still here, so those years of fear were all a waste of time and so pointless.
I have a neighbour who suffers the same way, it has blighted her life, she is always visiting her GP , ( no serious health problems) every conversation with her, she brings in some worry or other about her health. It makes her someone who cannot just enjoy the many wonderful aspects of life.
Please look for some help to ease your mind and get on with life in a positive happy way. Look for a counsellor , check their credentials very carefully , some are not truly trained up to the very high standards they should be.
I went through a bad patch a couple of years ago, I then saw the counsellor at the haematology dept who helped me. Ask , there is always someone they have available to talk to. As someone has also suggested ask about Marie curie , obviously they have great understanding of your fears. Other than that a psychologist who again research to make sure they have good qualifications .
Seek help please ,this is not an irrational fear you have, it is a problem that can be helped. By the correct professionals. I want you to have an easy mind and not let this rule your thoughts .
We all understand your fears and doubts, we all have our wobbles at times. We can recognise them as wobbles. With you they build up in your head and overwhelm you.
Please I am not lecturing you. Just want you to be helped with this totally understandable problem.
I am certainly NOT a health professional , just a fellow patient , with my own experiences. I have been offered so much kindness and help on this site from wonderful people who understand your fears and anxieties.
So please seek help. You can then enjoy your life when you are helped to put your fears into perspective.
We do understand.
With love Sandy x
Sandy I couldn't have said it better myself
So you know I understand, now please research for help. Sorry my family always say I’m bossy.....
X
I have read some of your replies. I echo them all. ( 4 years on I still have fits of low moods then I tell myself to get on with life. It’s still hard to do though.
We are all here for you. Do share with us your results.
Love and hugs
Yeah, I think we all have times we are low. Happy thoughts help the way you are feeling. My grandchildren are my happy thoughts - I just think about the mischief they’ve been up to and their big hugs and laughter. I’m smiling now, just typing this! Aime xx😻😻
First, you never need to apologize on this site. That is what we are here for. I was worried about my first bmb so I asked my sister to come with me. It turned out to be unnecessary because it was very quick and I was able to walk out of there. I was happy to have a diagnosis and a reason for feeling the way I was for months before. I knew that I could get treatment and hopefully start feeling better. It’s true, you are very young, ( I was 52 at the time) but you also have the benefit of so many years of research and there is a good chance that you will never progress and maybe even be able to reverse any fibrosis. I know it’s easy to say but please try to get on with life and turn your focus to living the best life you can.
We are all here for you.
Cindy
We have chatted before, but my refrain remains the same. Having had a MPN, ET that progressed to PV, for over 30 years I can tell you that it can be managed. Sure there can be challenges and worries, but this is typically a long-term slow moving type of blood cancer. The majority of people with ET do not progress and live normal/near normal life spans.
Here are the things that help me.
1. Support from family and friends
2. Support from this forum
3. Support from my faith community
4. A fantastic team of medical providers
5. Having learned to be a very assertive advocate for my own health care.
6. Becoming educated about the MPN and the other medical conditions I am dealing with.
7. Practicing Qigong
8. Focusing on overall good health - diet - exercise
9. Saying the Serenity Prayer every day (sometime more than once)
10 Surrounding myself with things that make me happy and uplift me
Therefor my MPN sister - I will leave you with this - It made me smile
Hi, I think it’s quite normal to feel worried and scared, it comes as a shock. At first I kept thinking about strokes and leukemia but I have calmed down a lot and you will too. As long as you get your regular blood checks and if your platelets rise they will adjust your meds to bring them back to normal, so don’t worry. Mine have recently risen but not enough for the consultant to increase my meds. Be positive and enjoy yourself.
I was diagnosed in June after a bone marrow biopsy. ET Jak2 now on Pegasys and aspirin. To start with I felt the same fears as you but thanks to some good advice from the knowledgeable and friendly people on this forum I feel so much better about things now. I think of it as a blood disorder and tell myself that I can lead a normal life with ET, there are always people a lot worse off than me. Took a couple of months to get my head around it all. I hope you manage to do the same
Essential thrombocytosis 
