Hello everyone,
I am new here and would very much like to hear from others who have an MPN.
I am finding it difficult to cope sometimes.
Coping with an MPN: Hello everyone, I am new here... - MPN Voice
Coping with an MPN
Written by
Mardigras
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50 Replies
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Hi
Welcome to the forum, we are a friendly bunch.
It can be hard sometimes, especially with a new diagnosis.
I have the PV flavour of MPN, 3 years since diagnosis, if you post a bit more about yourself, which MPN, how long you have had, what meds etc there will be plenty of people who can offer advice or even just share their own experiences.
Paul
Thank you Paul for replying. I was diagnosed here in Spain and then went for a second opinion to my home in the UK. It was confirmed in July this year that I have ET.
I tried to enter some details about myself on the database, but it won't save, so after an hour I gave up.
I am being treated with Hydrea.
I don't know much about PV, just that it is another MPN. I hope it doesn't affect you too much and that your treatments work. Kind regards,
Marcia
Hi
I am doing ok on Ruxoltinib, my sister has ET too although currently only on clopidogril.
Hope you are doing as well as can be, it is scary but the more you understand about the conditions the more i think you realise a full active life can still be led.
Paul
Thank you Paul,
I'm sorry that your sister has it too. Both consultants that I have seen say that they don't think it is genetic. I do!
I am convinced that my mother also had ET but was never diagnosed She had all the symptoms that I have and several strokes.
Is PV very different from ET. I have not heard of the drugs that you mention.
I try very hard to lead a normal life especially with my grandchildren.
I do appreciate the time that you have taken to respond and am feeling a little less lost today.
Thank you.
Hi
We are assured its not heriditary however there is a belief some families may be more likely than others to have people with MPN's.
Ruxolitinib is a new (ish) drug and inhibits the Jak2 gene, its currently licenced for MF and PV and under trial for ET Patients.
PV is where your body over produces red blood cells, although a lot of PV patients do also have elevated platelet counts too, the symptoms experienced can be very similar across all MPN patients.
Paul
Hi Paul,
Thank again.
I am beginning to understand the difference with ET and PV. Perhaps Ruxolitinib will prove a better med for ET too in time.
The trouble is that I don't know which if my symptoms are acredited to the disease and which the medication. Both of my consultants don't seem too talkative about it.
I do hope that you continue to feel well.
Kindest regards
Marcia
Hi Mardigras - welcome to the forum, which is a great source of information, advice and support for all of us.
I have ET, CALR+ and was diagnosed 13 years ago. It is a big shock when you first find out you have an MPN but many of us have learned to live with it and lead a normal life.
Which MPN do you have and how are you doing with any symptoms, medication etc?
MPN Voice offer a buddy service to link you up with someone in a similar situation who can share their experiences - you might want to consider that too.
All the best
Andy
Hello Andy,
Thank you for replying,
I haven't been told that much except that I have the Jak2 gene and subsequently ET.
In Spain I had a spinal tap and was then diagnosed and treated with Hydrea. My second opinion in the Uk was just a blood test. Apparently they don't do bone marrow biopsies there. They have continued with Hydrea.
I also take baby aspirin, simvastatin, lisinopril (to deal with high blood pressure) and omeprezol to stop the heartburn from the cocktail of drugs.
I have had two Tia's so am considered high risk of a thrombosis .
I am not sure what is causing the depressive mood and fatigue.
Is it the medication or the disease?
I am in the 'you look ok so you must be fine camp', which I must admit doesn't help my mood.
It really isn't that I want sympathy, but Not feeling like I am swinging the lead would be a nice change.
Sorry for the rant.
I wish you well and thank you again.
Kind regards,
Marcia
Hi Marcia,
It's understandable that finding out you have a chronic condition gets you down - I think most of us have been there at times. I struggled a bit to begin with, then came to terms with it for many years when I was on aspirin and simvastatin only.
Rising counts and approaching 60 meant I needed to start more treatment last year, which was another hurdle to get over - not keen on the idea of being on meds for life..! I started on Pegasys in October and it's controlling my counts well so I'm back to living quite comfortably with ET again - hoping I can reduce treatment frequency again at my next visit to the clinic in early October.
Maz from MPN Voice may be able to put you in touch with a buddy who you can talk to - that wasn't available when I was first diagnosed but I'm sure it would have been very helpful.
Best
Andy
Hi Andy, I am pleased for you that the new medication is working well. I am hoping that in time I will be able to cope as well as you.
All the luck in the world for your October hospital visit.
I don't know who Maz is, and was unable to introduce myself on the site. It wasn't working properly for me.
I'll try again tomorrow.
Thanks so much for your time.
Have a happy day!
Hi Marcia - sorry I should have explained that Maz is the administrator for MPN Voice and this forum. She is on here as Mazcd or can be contacted via the website for buddy requests.
Andy
Hi Marcia, you have done the best thing by joining this forum. Everyone is lovely, they understand how you are feeling and can offer suggestions about things that helped them.
I have had Polycythemia for 4 years and made so many lovely friends on this forum who have listened to my rants and low moments with so much empathy and support.
Your moods are affected by how you are feeling so you have every right to feel down in the dumps, worth having a chat with your GP but we all have these moments, trust me. I try and think about something happy like being with grandchildren when I'm down and find happy thoughts lead to happier feelings.
Andy has already mentioned the buddy system which is great. Maz our editor can arrange this for you. The MPN Voice website gives you lots of information about your illness and Maz can also help with this. You will never be alone again. Kindest regards Aime xx😺😺
Sorry Aime,
I fell to bits for a short while, but am in control again now. It must be all the kindness and understanding from you all.
It probably was very cathartic.
Like you, my grandchildren are a constant source of joy. Aren't we lucky.
Have a happy day.
Kindest regards
Marcia
Hello Aime,
Thank you. I'll write more tomorrow. Feeling a bit overwhelmed right now.
You are very kind
Hi Marcia,welcome!As Aime said,you do fall apart at the seams to begin with,every niggle of the body scares you .Iam P V diagnosed in France where I spend the most of the year.7yrs coming up now......I am 76....don't feel it or look it.Work still as a sculptor ,just had big expo,coming to Uk later for another.Not that the 7yrs has been without its problems,the fatigue,the frustration of not being able to do what you always did before.Monthly blood tests,then Hydrea more or less depending on results.The other thing is not looking poorly,even when you feel like death,and there are those awful days,only my family and close friends really know.As others have written,there is help here,you are not alone...it has been a life saver for me just to know how others feel and answer your woes.Keep very positive,you will manage,you will live your life around it,so don't be scared,chat on this forum,ask questions.....Very Best to you,Sally
Thank you Sally, It's good to know that others also struggle and I'm not the only one who finds it difficult sometimes. I have been a carer for my husband who had an esophagectomy almost five years ago and It has been a horrendous hill to climb and get him back to reasonable health. He will pass his five year survival time and get signed off in February.
I think my family are in the camp of 'well you look fine so you must be fine' and are a bit worn out by all the worry with my husband, who will always look too thin and be very tired.
I have always been the strong one in our family and it is disconcerting to feel so low now.
Having somewhere that I can share things will mean the world to me.
You sound very upbeat and much younger than your years. Well done you!
Thank you so much.
Marcia
Sounds to me you have had a rough time,how unfair life is to some ,others sail thru without a care.I am lucky my husband looks after me well,otherwise I could not still work and be a 'house wife'!He has had to take over my horses too,my energy does not extend to doing a lot with them,I have to accept that,tho regret it as we have bred competition horses for 50 years.We all have to adjust,but you have a great deal to cope with which must be so hard .Keep up your spirits tho,when you are used to Meds etc,you will feel more like yourself.An old friend of ours used to always say 'keep the faith' !Again ,Best to you,and Bonne Chance !Sally
Hi there
I'm sorry about your diagnosis. I was recently diagnosed myself with ET JAK2+ and have been seeing a psychologist to try and help me deal with some of my anxiety/anger etc. It is overwhelming at first so cut yourself some slack❤ I am only on aspirin at the moment. This forum has helped me a great deal.
Hello Jennifer,
Good for you to be able to control the ET with aspirin.
I'm sorry you have ET too. It really feels a bit unfair at times doesn't it.
I'm not sure if it is the drugs or the disease that makes me feel so rubbish and I would like to lower the dose, but my doctor won't hear of it.
I will be seeing a Spanish consultant in October, so I am going to try to get him to reduce the dosage. We'll see.
Thanks for your kind words and support.
Kindest regards
Marcia
My platelets are only in 600s so far...picked up during prenatal bloodwork. I'm still relatively young so not high risk enough for hydroxyurea. I'm so angry this happened to me...life isn't fair, but really? We have to go through the gambit of emotions..I took Xanax for a couple weeks. There is no shame. Keep of the fight and rest when you're weary and get up again. Good luck!!
Thank you Jennifer. You seem very young and I am so sorry that this has happened to you. It makes me feel like giving myself a good shake when I reached almost 70 before being diagnosed. I wish you well for your future and pray that there will be a cure in the near future for all the young sufferers. Hugs, Marcia
Hi my name is Kat and I'm new to this forum I have been diagnosed with E/T and I'm just getting my head round it hoping to get lots of advise. I am on medication and monthly blood test I get fatigued but try to fight through it I've started to have massage and relaxation therapy. Hi 👋 to you all
Hello Kat,
I am new here too, but everyone has been so helpful and kind, it makes it easy to discuss things and get lots of answers.
I too have ET and like you the fatigue gets me a lot of the time.
Relaxation therapy sounds like a really good direction to take. I hope it eases some of the tension for you.
Good luck to you Kat, keep well.
Kind regards
Marcia
I saw a phsyciatrist at the French hospital where I was diagnosed. A great help to learn to cope with a malignant condition....I also still take the odd 'upper'when I get down,my Medicin General,agrees too that considering the poison we take,the little helpers are nothing to be concerned about or ashamed of needing them,life is for living so if it helps ,then fine .Lucky you not needing the chemo drugs.Long may it be so for you,Best Wishes ,Sally
Hi Sally,
My goodness you are a busy lady. Where in the Uk will your Expo be?
I'm sorry that you can't find the energy for what must be beautiful horses. Though I expect your husband has a wealth of experience with them too, which is very good for you. It must be lovely to have someone to depend on and share your fears with.
Thanks for sharing with me and taking the time to make me feel almost normal again.
Bless you
Marcia
Bless you too,I am just off to bed,can not stay up late,we are an hour ahead of U K ,as you will know if you spend time in Spain.If you are interested,I have a web site,if you type in Sally Rutherford I come up .Good night ,rest well .Sally
Wow Sally, I had a look at your web site and you sculptures are absolutely beautiful. What a clever lady!
I was looking at them when my little grandson came to me and started looking too. He's six years old. He said 'Oh Nanny, that's Peter Rabbit'. I should mention that Peter Rabbit is still his favourite book. He loved your sculpture.
Thank you again for your kindness.
Sweet dreams,
Marcia
Hi Marcia, I was told I have ET just over three years ago now, all a bit of a shock at first, but once I got on this forum it changed my feelings thinking I was the only one on this planet that had it, but boy was I wrong the folks on here are a great bunch giving each other such wonderful support no matter what type of MPN you have.
Like you I take Hydroxy, Asprin, lisinopril, thyroxin and also Omeprazole, which I find helpful with the refulx, but now drink mint tea on a regular basis which really does help so can leave the Omeprazole alone quite a bit now.
Life is for living and enjoying our families and especially grand children, so do get in touch with Maz she has many booklets she can send you which puts everything into perspective plus a buddy to listen to you when you are at your lowest, or just have a rant on here.
Us folks with an MPN live long and happy lives, just wished that mine had been diagnosed years ago, then that would of explained all the ill health I had.
So onwards and upwards, enjoy your life and family, we are all here for each other.
Jean
Thank you Jean. It makes me feel so much better being part of a community. I must admit that I thought I was the only one and that is quite isolating.
Both consultants that I have seen say MPNs are rare and I think that it makes you feel better knowing that others are living with it and coping well.
I'm still not sure if it is the medication or the disease that is to blame for the extreme exhaustion at times. I have to say that I didn't feel so bad before I began taking the hydroxy. Now, sometimes I have to really push myself to do things and that is so unusual for me. I used to have more energy than anyone I knew. Could be old age too maybe.
Anyway thanks again
Hugs
Marcia
HI
Myhusband has pv jak 2 positive he's had it 4 years in November he's 44 works full time.
He does struggle with extreme fatigue but he gets on with things the best he can.
He takes 1 x 500mg hydroxy daily he's never had any side effects.
Apart from the tiredness he's quite well in himself.
Hey Marcia... 
Welcome to our rather exclusive club, the MPN Club... :))
I too was really only recently diagnosed, May 2016, with Post ET (prefibrotic) MF.
What does all that mean, you might ask? Well, just that my flavour of ET is transitioning into Primary Myelofibrosis (MF), possibly...
I also had a TIA in August 2015, but didn't really know that was what it was, because at that time all tests I had were negative.
Hence, it was quite an overwhelming and bizarre thing to learn about initially, and that can take some adjusting to...
I am 57, and I was studying full time at university (new career) for these past almost 5 years. In February 2016, I decided to apply for a position based in SE Asia, where I would have been posted as a volunteer for circa 12 mths. However, part of that staged process involved having a standard medical, and a Full Blood Count (FBC). Two (2) days before I was due to depart my results were indicating that I might have ET (Blood Platelets at 1700).
At first, I hit the books educated and edified myself in this capacity to become more familiar with these MPN conditions, and possible ramifications.
Then I tried to find a way to believe that what I was really suffering from what might have been a case of 'Reactive Thrombocytosis' rather than believe it was an incurable condition...
Unfortunately, I was sent for a BM Biopsy, and my ET was confirmed. Just to be absolutely certain, I then had a further genetic test that discovered I was also CALR+ (another gene mutation similar but not the same as the JAK2+).
Hence, at first, my specialist started me on Hydroxyurea (HU), at 500mg per day. After about 6 weeks this was doubled to 1000mg pd.
My body did not tolerate the HU very well, and what's more, I can also confirm with you that the HU was increasing my feelings of depression and hopelessness with my diagnosis etc...
I also almost immediately starting seeing a psychologist, however, that did not particularly help me either because (unbeknown at first) was the fact that the psychologist had a religious background with Hillsong, whom you might have heard of...?
Yes, I am an agnostic atheist, and as such 'letting go and letting God' just does not work for me... (no offence or disrespect intended to you or anyone of course).
Notwithstanding, I spoke at length with my specialist, and eventually changed to Interferon injections every two (2) days.
In my experience, some of the mental confusion was alleviated and my general disposition improved somewhat.
Therefore, it might be worthwhile for you to speak with your specialist, and arrange a trial of a different med's regime for a while, and see if your condition improves any...?
Just a thought...
Possibly, among some of the worst symptoms for me personally, are the memory lapses that I occasionally suffer from. Sometimes, I find that incredibly disturbing. Apparently, in my case, this is partially because of the med's and partially attributed to damage caused by my TIA...
But yes, extreme fatigue, nausea, enlarged spleen and always feeling satiated, poor sleeping patterns, pruritus (itching), headaches and a very painful at times ache in my bones and joints...
I have also suffered from another chronic condition that I have only recently discovered is often associated with a condition known as:
Erythromelalgia (EM)
Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks. The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders. Primary erythromelalgia may appear to occur randomly for unknown reasons (sporadically) or may be familial, suggesting autosomal dominant inheritance.
In addition, some researchers indicate that there may be three different subtypes of erythromelalgia, with most individuals affected by vasoconstriction followed by reactive hyperemia (as described above); some with primarily vasodilation abnormalities; and others with erythromelalgia secondary to conditions characterized by increased numbers of certain cells in the blood, such as platelets (thrombocythemia), and associated, excessive viscosity of the blood (hyperviscosity). (For more information, please see the “Related Disorders” section below.)
LINK:
rarediseases.org/rare-disea...
Some times, as you sound like you too are already discovering, it can be difficult to determine if our symptoms are induced by the med's regime or a chronic constitutional part of these various MPN conditions.
In other cases, some of our symptoms (like EM mentioned above) might have grown with us over many years... such is the case for me...
The one thing that I can confirm above and beyond everything else to do with these MPNs, is the fact that you have found this amazing website.
MPN Voice is such an incredible facility, and yes... we never need to be alone again...
Welcome to the club Marcia...
Steve
(Sydney)
Thank you so much Steve for your very informative reply. Next month, here in the Canary Islands, I will see the consultant who first diagnosed me. I had to have the diagnosis translated in England and it appears that the consultant agrees with the diagnosis even though they do not do a marrow biopsy at the hospital there. The consultant says that they can tell from the blood test alone. My Jak2 positive diagnosis was from the marrow biopsy in Gran Canaria. I had heard About Calr and asked the English consultant. He was either unwilling or unable to talk about it and said that it was not important at this stage. I don't know enough yet to challenge him on that.
What I do know is that the symptoms of exhaustion, confusion and memory loss, weight gain and some hair loss is quite upsetting to me. I also have frequent pains in my legs and several other more minor symptoms. My ankles and feet are always swollen, but to be honest I had that before I was diagnosed. It's horrible.
I am going to ask if I can try a different medication regime next month.
You seem to be coping really well, so well done you!
What are you studying? I expect that it helps to have a different focus. Did you have to stay home now that you have been diagnosed or will you be able to continue with volunteering in the future. I hope so for your sake and the people that you would be supporting in SE Asia.
Best wishes to you and good luck for the future.
Kindest regards,
Marcia
Hey Marcia...
Lovely to meet you...
Canary Islands & Tenerife resident - cool. That must be conducive to warmer weather and climate...
Due to my diagnosis, I am finding myself less and less able to manage very cold climates, even Sydney has become too cold for me in our milder winter...
Your case and results/testing all sounds rather interesting to me...
A hospital in England that does NOT do a BMB? And a consultant that is unwilling to discuss gene mutations?
You may well find the reason behind such things is simply one where certain people, (who are unfamiliar to understanding the complexity involved with having an MPN), are unwilling to acknowledge their deficiency...?
I always remind myself occasionally of just how rare our MPNs really are... (circa 150-200 cases per year in Oz)
Personally, I have struck this knowledge vacuum on more than one occasion. It is rather a specialised field, and because of its rare occurrence, there is not a great deal of research being funded into finding alternate forms of treatment or indeed a 'Cure', unfortunately for all of us...
The only treatment (as you no doubt learning) is the management of our conditions by a static range of cytotoxic drugs: HU; Anagleride, Interferon, Ruxolitinib etc... That tends to make us the 'Greenfield' for the testing and finessing of new treatments as they evolve etc...
Personally, I would really like to be able to trial the Ruxolitinib after all the things I have thus far heard of its ability to reduce symptoms and the size of the spleen etc...
But apparently, (in Australia), i have to meet a criteria that first means I must become even more ill before I am allowed to partake in such a direction...
Therefore, I must learn how to be ever more patient, and that is most difficult given my hypertension and high blood pressure too...
We all have a good & bad days... but I am still trying to cope as best I might...
The point of having the genetic test in my case was because I was JAK2 negative.
In your case, you already know that you are JAK2+ and therefore your diagnosis is likely confirmed.
However, learning if we have a triple: JAK2+, MPL, & CALR+ can be instrumental in learning more about our long-term prognosis.
My CALR is type2 (5p insertion), and depending on the academic analysis, this can mean both a better prognosis but also a deteriorating 'Quality of Life' than say compared with a JAK2+ or a Type 1 CALR etc.
However, I am still trying to glean as much as I can in this area, and I have so much to learn...
I actually had to stop studying full-time as my condition is adversely affected by stress, unfortunately.
My studies were mainly to do with understanding the human condition and experience, in a very generalised manner.
In any event, my advice is to try to learn as much about your condition as yourself are comfortable with knowing...
Not everyone wants to learn about the conditions to the same extent, however, for me personally it is imperative to my sanity...
Best wishes Marcia (stay in touch with MPN Voice)
It really is a modern marvel... in my view.
Steve
(Sydney)
Hello again Steve,
I have woken up today feeling a lot more positive. Ok, it's really early here, three am, but the mornings are best for me and I am going to wait until daybreak and take a long walk along the beach. It is so beautiful there in the early morning and the sunrise is amazing.
You are right about the people on here. They have been so kind and helpful and made me feel much less isolated and a little more informed about MPN's. It has also made me realise that others have much more to cope with than I do and I feel a bit ashamed about the whinging.
It will help me, like you, to understand as much as I can about this disease and I fully intend trying to find out what my likely prognosis will be. For the moment the two consultants have been very general and said that it is possible that I can lead an almost normal life if the drugs can control the condition.
That is pretty positive, but a little too general for me and doesn't go far enough into explaining all the symptoms that I have had since my last visit, or the likely outcomes. I will try and dig a bit deeper and see where that leads me.
Presumably, Jak2 negative means that there is no evidence of the gene mutation, and my positive diagnosis means that I have the mutation, or am I simplifying too much.
As to MPL and CalR, I will have to do more research. Bit of a minefield eh!
Anyway Steve, thank you so much for your time and help, it has been invaluable to me.
I wish you well for the future and hope that this winter in Sydney is a particularly warm one for you.
Take care.
Kindest regards,
Marcia
Hey again to you also Marcia...
Your morning walks sound like living in an absolute paradise... (lucky you)
Sorry Marcia, I thought that you had previously reiterated that you were JAK2+(positive), whereas, if you are no negative, a genetic search for other genetic mutations might help you understand a little more about your own condition.
My diagnosis initially, was JAK2 negative, BCR-ABL & MPL negative.
Knowing that fact, led me into trying to prove to myself, and others, that I might only be suffering from some other unknown infection, that was a form of 'Reactive Thrombocytosis' rather than ET etc....
However, the CALR (type2) detection, soon put all that mystery to bed, so to speak. At least I do know, and for me personally, there is some comfort in that knowledge...
In any event, have a beautiful morning Marcia...
Steve
(Sydney)
PS. I just might have to try to move back to Queensland, it is also tropical up there too...
later...
PPS. The CALR detection only requires a special blood test, no BMB required...
S
Hello Steve,
Goodness me, I am taking up a lot of your time. Thanks for being so generous with it.
You are absolutely right, my diagnosis was Jak2 positive>5% Eritropoyetina = 6 (N). This was a Spanish diagnosis from the bmb. Not sure what the Eritropoyetina bit means.
I was just interested to know if a negative result, simply meant that you did not have that particular gene mutation. I might ask the consultant if he can see if I have Calr or MPL on my next visit. I prefer to know what I am dealing with. Although what difference it will make is in question.
Yes, thank you I am looking forward to my walk and watching the sun come up. I have decided to take a flask of coffee and my current book and reflect on how lucky I am. Five forty nine am. Not long to go now although dawn comes a little later at this time of year.
Take care and have a perfect day.
Kind regards
Marcia
Hey again...
I hope your walk was all you had hoped for...
I believe that 'Eritropoyetina' is the Spanish term for the equivalent English term of:
EPO, hematopoietin, or hemopoietin, is a glycoprotein hormone that controls erythropoiesis, or red blood cell production. It is a cytokine (protein signalling molecule) for erythrocyte (red blood cell) precursors in the bone marrow.
Usually, our Full Blood Counts (FBC) or Complete Blood Counts (CBC), reflect the levels of all blood production: Red, White and of course our Blood Platelets.
Our specialists are then able to map and keep tabs on how we might be reacting to whatever med's regime they have us on at any given moment etc...
It is not unusual for other aspects of our FBC's to bounce around a tad as we go through a series of treatment regimes... Red Blood counts can go up or down, and the same with WBC too.
By the way, you are NOT whinging... Having an MPN is a serious piece of news for anyone to have to come to terms with...
You are also not taking up my time. I am happy to chat and doing so helps us both...
Have a brilliant day Marcia...
Steve
(Sydney)
MazcdPartnerMPNVoice
Hello Marcia, welcome to our forum, as you can see from all the replies you have received so far, it''s a very supportive and friendly forum. If you would like me to send you any of our booklets or details of our buddy program then please email me at maz.cd@mpnvoice.org.uk. Happy to send you whatever you need and to answer any questions that you have. I can completely understand how difficult you will be finding it at the moment, we all go through that feeling, it can be really tough to come to terms with your diagnosis and to try and understand everything you are being told about it, I would suggest that you read as much as you can on our website mpnvoice.org.uk and also look at some of our videos which may also help you, some of them are patients speaking about their MPNs. Best wishes, Maz
Thank you Maz for your kindness and support. I would love to receive any booklets and buddy details that you may have available. I know so little and I know that it would help me to be better informed. I have been reading whatever I can find, but it is an awful lot to take in at the moment. I am trying to get answers to one thing at a time and can then ask the consultant from an informed viewpoint about changing meds. or possibly the differences between medications and the contra indications.
Like Steve, I have been feeling depressed and hopeless lately and my husband and daughter exchange glances and raise eyebrows. This does little for my morale and I feel unappreciated, especially as I have dedicated the last five years to keeping my husband well during his recuperation from an eosophageal cancer operation. Oh goodness, I am whinging again sorry!
Thanks again Maz and everyone for all the support. I can't tell you what it means to me.
Bless you all!
Marcia,you seem so down,honestly we all feel the same sometimes.My fatigue has seen me collapse in a supermarche trolley,my poor husband having to lift me into bed when I have carried on beyond my limits the studio or kitchen,walked too far with my German Shepherds.......we have to exercise but so difficult to just do sufficient to move circulation.My French consultant says the P V and the Meds,both contribute to the fatigue..It is a totally different thing from ordinary tiredness as I am sure you have discovered.After 5 years of caring for your husband. You must be tired and stressed to begin with.My ankles swell too,I am small and slim ,my dogs both weigh more than I do !Was dopplered recently ,cardio(I have a stent) thought it might be D V T !!!!Nothing was amiss at all.There are so many side effects that people write on here ,bruising is another one,I look like I have done rounds with a heavy weight boxer sometimes,I have only been playing with the dogs!!Great so many on here are supporting you,and that you reply.Please don't tell your grandson that the hares are not Peter Rabbit!! I Love Beatrix Potter,such a clever artist,have a full set of the P R books.,and her life story with her work from a child ,amazing.Try Dr Bach flower remedies if you have not already,they do help,I find ,like you when in U K ,the opinions of medics differ considerably.Last year at my daughters farm,I met with a stupid accident that I ended up unconscious,Ambulance to nearest hospital....not one of the medical personnel knew what P V or MP N was!!!Fortunately we carry all my medical details with us,then the translation problem!!!They did scan my head ,the nurses were kind,but they discharged me ,in a wheelchair !!!!!to our car.Here in Fr that never would have been,they would have monitored me at least overnight,still have scar back of head ,it bled for days and I had double vision!Very useful ,had work in foundries and a portrait to do !!Keep going Marcia,Thankyou for liking web site,it is a bit behind actually,must update it with more recent work.Take Care of yourself.Sally x
Hi Sally, you are very kind as well as talented, brave and strong. I hope someday I will feel like that too.
I feel a bit of a failure at the moment.
I gave Stefan (my smallest grandson) his mother's set of Peter Rabbit books. They are forty years old now and read and re-read a hundred times. Well loved!
Of course I won't tell him that your lovely sculpture isn't Peter Rabbit. Funny thing is that he asked to see the picture on your site again today and he said. 'I expect that was the day that Peter Rabbit lost his best blue jacket'. They are so funny at that age. Delightfully bright and funny.
I am very lucky, the children keep me sane.
Thanks again for your support.
Kindest regards,
Marcia
Thank you Sally for sharing your low times with me. It helps to know that I am not the only one who doesn't always cope. It sounds as if the hospital in the UK were a little negligent to say the least?
Yes, the exhaustion is very different from normally feeling tired. It seems to sap all your strength and makes me feel very weak. I have asked Maz to send me a card so that I too can keep my details to hand.
Today will be a good day. I have decided.
I am going to walk along the beach here and watch the sun come up as soon as it gets light. I'll take a flask of coffee and my book and sit a while when I get tired. It will do me good to reflect on the wonderful things in my life.
I didn't just like your web site, I loved your work. It would be impossible not to. Anyway, Stefan I have discovered is a very good judge of art. He loves it too.
Have a happy day,
Hugs,
Marcia
Hello Marcia,
Welcome to the forum. You have already received much good advice so I cannot improve on any of that as I too am a novice. I was diagnosed last May and have ET CALR. I started on 500mg of Hydroxea, increased to 750mg in June, 100mg in July and today gone to 1500mg a day. My levels remain stubbornly high according to the Consultant at my hospital here in Ireland.
I am 71 tomorrow and have not told my 4 children about this yet. We have had the family illness of alcoholism in my late wife which had quite a disturbing effect all of us. I do not want to have them worry about me as they did for their mother. I have 4 lovely grandsons, the joy of my life! I am so luck to have found great help in Al-Anon Family Groups which equates to what this forum is about too. Sharing experience, strength and hope is very powerful. I regard my condition as a blessing in disguise as it has finally given me the motivation to retire and make more time for my golf and my family. I have let go and let God many times in my life and He is there to support me again - how blessed I am!!
I will let my children know in as gentle a manner as possibel in the near future as I relaise it is unfair not to let them know of my health condition. However, it will be a most positive and gentle telling with emphasis on the great life still ahead of me!
Best wishes for a great life to come, in spite of the minor inconveniences of meds, hospital visits etc.
Regards,
Frank
Hello Frank, I'm very pleased to meet you. You sound as though you have been through the mill and I am really sorry about your late wife and your recent diagnosis.
Your brave outlook on life is very comforting and I am sure that it will hold you in good stead for all the things that this horrid disease can throw at you.
I have heard about Calr, but I am not quite sure how it is diagnosed or how it affects you if you have it. Only that it is another gene mutation. I am going to try and find out if I have it, but I'm hoping that I wouldn't need another biopsy. I didn't enjoy the last one very much.
I truly hope that your golf and the brilliant exercise and fresh air regime that it affords will help to keep you well and give you a different focus. You certainly sound very positive. I feel so sorry for all the MPN sufferers who still have to carry on working, it must be so difficult when the exhaustion sets in. At your age you can retire knowing that you have done your bit and start enjoying some 'me' time.
Have a smashing birthday today. I'm sure that some of your four precious grandsons will help you celebrate. How lovely!
I wish you all the best for the future.
Kindest regards,
Marcia
Hello Macia,
Thank you for your good wishes.
When I was diagnosed last May, I became very keen to grap and understand my new health condition. I got tremenduous support on this forum and lots of links to information. The one site I found best was the British Cancer Society website. After reading a simple description from that I decided I had enough information to be going on with! On each visit to hospital I ask a few other small questions and I have slowly gathered snippets of further elaboration on the condition. I found out on my visit yesterday for example that CALr is one of the less risky type of the condition so that is the good news I hold onto for today!
I truly believe that every cloud has a silver lining and consider myself blessed to have this condition identified in time to deal with it. Indirectly, it has given me a new lease of life which I intend to live to the full with my golf, voluntary work, my four children and my gorgeous four grandchildren, all of whom live with a few short miles of me and who will all be calling into me this afternoon and evening to celebrate my birthday. How lucky am I?
We need to keep strong and look for the positives that are all around us every day. The negatives are just part of life and living!
I hope you can get to a good place in your life and get to enjoy it to the full as I do.
Kind regards,
Frank
Hello Frank,
I hope you are having a really nice birthday,
You are right, we all have to be grateful for the good things in our life and try to minimise the bad.
To that end, I woke at 3am and decided that at daybreak, I would take a long walk along the beach here and reflect on how lucky I am.
It was unbelievably beautiful to watch both the sun come up and the moon go down.
I am going to try really hard to reach that good place and have made a positive start today.
Thank you so much for the advice and support Frank, it has been such a help.
I hope you get a yummy birthday cake.
Take care,
Marcia
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