I hope you don’t mind me being part of this group...my dad was diagnosed with ET a couple of years ago. We were told not to worry and life goes on.
He has been on the chemo tablet (unsure of the name) for a couple of months and has been quite poorly. A couple of trips to the hospital, lots of blood tests and more recently 2 CT scans, to check for a stroke, all clear which is good.
As people who deal with this everyday, what is the best way to support my dad.
He is a very strong, proud man who wont let anything phase him but I’m the opposite, i want to know everything and worry and get upset for him, never in front of him, i always follow his approach when I’m talking to him.
He has agreed for me to go to his next appointment with him, what questions should i be asking??
Thanks for reading this and thanks for any support in advance.
Please let me know if this forum is not for me.
Katie
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KatieA18
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I have PV. My thoughts are about quality of life. If this drugs are lowering the quality of life, then this need to be addressed with your consultant. Good luck with your dads appointment.
How awesome that you care for your Dad and are there to support him through his journey. My daughter is not quite so understanding, she just tells me that i can't let how i feel stop me from doing things, haha, if only ...
There is a wealth of knowledge on this site and personal recommendations like drinking enough water etc, common symptoms others' suffer from etc.
One thing i learnt after suffering for 2 years with my medication is to be brutally and explicitly honest with your haem doctor and tell them exactly how your father is feeling. So don't be afraid or too shy to voice any concerns and ask what options are available and what support they have available to make life a little easier.
This is absolutely the right place for you. You will find lots of help and support here. Have you looked on the MPN Voice website? Lots of info about all MPNs there, including how to approach consultations and questions to ask.
I'm probably in the same boat as your dad (68 with ET JAK2+) and stubborn as a goat - or so I'm told 😉. Him being positive is a good thing but he probably has inner fears - we all do, even if we try to hide it from others. It's great that he has you to support him and the more you learn about ET the more you can help him.
Your dad must be really proud of you and I'm sure he appreciates your interest in his health. You are doing a great job!
Your dad has raised a fine daughter. He will inevitably be worrying, but perhaps trying to be stoic, keeping his concerns to himself.
I think you are doing all the right things. This site is a fabulous resource because it brings other people's experiences as well as information; really useful for me, because a patient can feel isolated. Our condition is relatively rare and doesn't always manifest itself visually to those around us.
One tip I would offer at this stage - take a pen and paper to the appointment with your dad's haematologist. It's a great way to sort your questions. Keep up the fabulous support.
How awesome are you? I wish my daughter was more interested in my MPN (MF). It's a bit like that song for me I am afraid, the "Cats in the Cradle" song. Are you familiar w/ those lyrics at all...? Possibly a tad too dated for you...
Anyways, you will be made to feel most welcome here I am sure. As mentioned above, the MPN Voice website has plenty of information available for anyone who is connected to people w/ an MPN. Maz, the website coordinator, will be happy to assist you with your questions too I am sure...
Write down any questions you might be thinking of prior to attending your Dad's next medical consultation. I do this myself as I often struggle to remember everything between one appointment to the next.
I agree Steven Katie is a wonderful daughter to want to support her Dad. Just last weekend my daughter-in -law asked me, what do I do every morning to be so tired in the afternoon? I have had ET for several years I have tried to explain but find eyes glazing over....so I no longer feel I want to explain the fatigue...we are a close family but I just feel my sons do not want to know.
Katie your Dad maybe proud and stoic but your interest and caring about his condition will give him a lot of comfort. Maz the wonderful administrator of this site can send you some really helpful well written booklets to help you understand Your Dads ET.
I wonder if sometimes offspring aren’t disinterested, they are just scared. And sometimes they are neither especially scared nor disinterested but simply preoccupied with the self preoccupation of youth. And occasionally all three.🙂
Hi Katie, welcome to the forum. Definitely the right place for you to be. I don't have ET, I have PV, but lots of people on here with ET. They'd be able to talk to you about any of the ET specifics. On the plus side, lots of people on here who've been living with the condition for 20 years plus, on the minus side are the symptoms, and that's probably part of what you could talk to doc about if your dad's symptoms are of concern. Someone's already said to look at the MPN voice website and that's good advice as there's a great deal of info there. One piece of advice I will give is to look after yourself too. Cared for both my parents and it is draining, you need to make sure you look after your own health. As for worrying - we all do, but that's where this forum is useful. Ask questions, write down your worries here - there's always someone ready to help.
Hello Katie well done on being so supportive to your dad - that's one big it hurdle over for him to start with as so often this "unknown and unseen" condition makes it hard for people to understand or even notice that anything is going on - so your support will mean a lot.
I have been diagnosed with ET for 11 years and been on the chemotherapy treatment Hydroxyurea for all that time too - you will see us refer to it as HU on here. It's a well tolerated and very effective drug - although when initially used esepecially if on the higher doses, it can effect you somewhat with some side effects - often these subside greatly after the initial months and your body and you yourself adapts to the treatment and you know your perimeters and limitations on it, many on here like me have used it for years some 20 odd years. It's aim is to reduce the platelet count which in ET is way too high, it will effect also other healthy level blood counts such as neutrophils and our HB so those are also checked at appointments. So for dad's appointment these are good things to ask and check :-
1. What was dads platelet count when treatment started and ask consultant to explain that level and why treatment was started at that point.
2. What is the platelet count now and what further drop does the consultant hope to achieve and aim for in future months (It takes some months for the levels to drop so a good level is not achieved quickly and it will fluctuate anyway over the years as we will all attest to!!)
3. Is an adjustment on dosage needed to further the drop in platelet count - often we all get out dosage "tweaked" at appointments even after years of treatment so in the initial months the dose will be played around a lot to find a good level to control things.
4. How are the other blood counts - keep an eye on neutrophils which can be low on any chemotherapy treatment and effects infections so to know how they are doing is good. Likewise HB and iron levels.
5. Mention any of dad's side effects - obviously there are individuals who can't tolerate the drug as with all medications so the consultant needs to know what is going on as to whether dad is the normal side effects or is the odd person maybe that doesn't tolerate it.
Other than that just ensure dad's consultant is a MPN specialist it makes all the difference - I know I have been fortunate the three consultants I have been under over the years at my local hospital have been brilliant, MPN specialised and so know exactly what they are dealing with.
As mentioned by others, for practical things do encourage dad to drink water, have a little bottle with him and sip it through the day. We tend to dehydrate more than normal and hydration will make every difference to how you feel, it negates some of the dizziness/weakness you can feel and if you keep ahead of it by drinking water it makes a huge difference. Dad will need to learn his way round fatigue - often we are encouraged when fatigued to actually take gentle exercise a nice walk can make a big difference. Yet it's balancing it for the times the fatigue is such that you do need to rest up a bit and doing things in little blocks and rest can be effective, I know I can't do long rambles round London Town like I used to back in the day - but we all still lead active good lives, it's just finding the right box for you to work within.
All the best Katie - keep us posted about your dad.
Thank you for your positive reply. I even printed this so whenever I’m feeling scared I will read what you said. I was diagnosed 3 months ago and am still having a hard time believing. I was so healthy and all of a sudden I feel like my world has come crashing down on me. My biggest fear is the hu. When my dr used the word chemo I freaked out and haven’t been the same since. But you have given me hope that I will get used to it and that my body will tolerate it more and more. Good to know that people have been on it for 10-20 years. I think more of my side effects are physiological and the fear I have is causing this. I have been to therapy which helps for a bit then I start having negative thoughts. Again thank you for this note I hope your positive attitude will help me through this
I can underatand your concern - its good to remember that whilst yes it is chemotherapy we are on low grade long term use treatment very different to the high grade blasts ones with aggresive cancers have. So although yes it has its challenges, it is very effective and is in fact the friend of MPNers keeping us safe and able to function and carry on with life. You will be ok as you adjust to a differing situation in life just give it time. Oh i take my capsules in the morning, always have - theres no right and wrong just preference and it makes no difference to its effects. All the best
Hmmm, stubborn parents ......🙂. I guess everyone has their own sense of identity and sometimes it is being stoical and never letting down your guard of being The Parent. If you’ve been fit and healthy and in control for a very large proportion of your life it can be really, really hard to come to terms with the fact that all of those things are now compromised. (Others, i’m sure will testify to that!). And that things have become a little scarier and mortality a little more obvious.
Sticking quietly by him and keeping a conversation going I think is all you can do. The fact that you are going with him to the appointment is a great step. There may well come a point where your roles will reverse so it is worth keeping informed and maintaining that strong relationship.
Lots of good advice here among the replies. Definitely read up as much as you can, question the clinical decisions - why, what are the alternatives, and definitely mention the symptom burden. The aim is to enable your dad to be as well as possible for as long as possible. Good luck and keep us posted.
Hi Katie, you could ask for a print out of your dads blood test results each time he has an appointment, that way you can see what is changing - up or down. At my hospital they give me a print out with the prescription (I'm on Anagrelide for ET) to take to the hospital pharmacy. I take a photo of this on my phone as the pharmacy don't always give it back. I keep a record of the results on a spreadsheet on my computer, then it's easy to look at what has happened with your blood over the months/year.
Hope all goes well for both of you in the future. x
Hi, As an ET sufferer all I want is someone to ask how I am doing? As for immediate family, i would love them to say ‘sit down you are doing too much’ They don’t notice I’m suffering unless I tell them or I’m breathless, which for me is a sign of fatigue.
Insist you are going to do something and don’t just offer. Explain that if you do a certain chore for him that will give him the energy to spend quality time together.
Nearly all information on the net says quality of life isn’t impacted upon but in my case and others it is greatly.
If you are a UK resident, get your dad to enrol with MPN voice. It’s brilliantly supportive or google the Mayo clinic. Both have haemotigists who specialise in MPNs.
It’s lovely you are so supportive. I wish you well.
Katie, find a doctor for him that is considered an MPN specialist. The MPN Foundation has a list. If he can't tolerate HU, see if you can get him on Pegasys.
Hi everyone, really overwhelmed that you have all been so supportive and have given me great advice. Thanks for tips on questions and printing out the blood results, that will definitely help me see whats happening. Will have a look at the Mpn Voice. Thanks again everyone. Really really appreciate it. I will keep referring back to this thread when I’m having a wobble. Xx
Just an extra point re the appointment. I always do a voice recording on my phone so that I can go over it all again when I get home. Sometimes it's easy to miss things first time around particularly if the doctor is using unfamiliar terminology. I found it very useful in the early days when I was still on a steep learning curve. My Doc's seem ok with it, but I tell them before I start.
I still write down any questions I want answers to in my 'ET notebook ' and take it with me so that I don't forget anything.
You are both in the right spot to adjust to your diagnosis. It is not cancer, it is a managed blood disorder that needs a close eye on. The best thong you can do is to fond your own safe space and support your dad in the way you feel able. Write every thing.g down from each appointment by keeping a diary and time line prevents so that over time you should see improvements. I hate been wrapped in cotton wool, and I am sure your dad is able to say what he wants you to do.
Try to remember he is one this journey with you as a support give him respect and space. Good luck.you are not alone.
Roger, I'm sorry to have to tell you but ET is a blood cancer - it's just not a tumour forming cancer. The WHO recategorised it as a cancer in 2008, and all major services, including the NHS and Cancer Research now regard it as a cancer.
Please don't think that I am trying to impose my views on you. I was diagnosed with ET last year too and specifically told it was not a cancer. I was furious when I found out that I had been deliberately lied to. Can I suggest that you show this to your doctor
It is from MPN Voice, which we all know to be the preeminent experts in MPNs, and it clearly states that ET is categorised as a cancer. Unfortunately not all hematologists are sufficiently knowledgeable about rare conditions such as ours.
I hope this is helpful, but I'm sure that if you ask the question on this forum someone's could give you a more detailed reason as to why it is a cancer, and why it is important to recognise it as such.
Hi Annemarie, Ovingite is correct in what he says. Maz Is probably the person to give you the best explanation. MPN Voice was originally MPD Voice, the name was changed after the WHO re classification to a neoplasm not disorder. Whatever it’s called treatment is the same, however it means that those of us who normally pay for our prescriptions can get apply and get them for free and anyone that has a critical illness policy can make a claim on the policy due to cancer.
I am 12 years in with PV, it was not classed as a cancer when I was first diagnosed but was soon after.
As someone once said, if you relate it to football and all the main cancers that we are all aware of are in the premier league, our one is in division 4!
I'm no expert but my layman's understanding as to why ET is a cancer is this.
Cancer happens when cells divide in an uncontrolled way. In the case of ET our platelet cells are out of control and too many platelets are produced. Sometimes this is caused by a gene mutating (in many cases it's the JAK2 gene) which keeps pumping out platelets that are not required, but there are other causes too. Fortunately in most cases this can be well controlled by a range of very effective drugs.
I hope that helps, but I would suggest that you get a more comprehensive answer from Maz to set your mind at rest.
Mmmm - have to agree with ovingite (maybe your specialist could do with a refresher) - please check out the info on MPN voice. I’m not particularly bothered by my classification however there are some
who may need to claim on health insurance - my hospital care plan for my ET is a cancer care plan.
Hi Roger, I am sorry to hear that you were knocked sideways on reading that ET is a form of blood cancer, the word cancer is a very emotive and frightening word, but if you think of your ET (this also relates to PV) as a neoplasm which means new growth, then it might not be so scary. In 2008 the World Health Organization (WHO) reclassified MPNs as neoplasms rather than disorders, this is because the word 'neoplasm' (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms), and because ET and PV are characterized by uncontrolled growth, most haematologists and cancer organizations do classify them as a blood cancer, but whatever they are called you must remember that the symptoms and prognosis can vary widely.
This reclassification did have some benefits to people with MPNs, in that people in England are entitled to a prescription exemption certificate so that they can have all their medication for free, and we also have access to more medications and drug trials, and critical illness insurance policies will now pay out a settlement for having a blood cancer.
So although it seemed very scary to be told that in fact rather than a disorder you now have a cancer, there are benefits. I was diagnosed in 2003 with ET, when it was called a disorder, it was explained to me that I had a bone marrow disease and sticky blood and that with regular monitoring and medication I would lead a fairly normal life. When it was reclassified in 2008 as a blood cancer, it didn't change anything for me, I still had ET, my prognosis was still the same, and my life has continued on the same path of living it to the full and enjoying it.
1st, what a credit you are to your family - 2nd you will see many of us with ET are trundling along living with it.
I am ET and for 2 years absolutely fine on aspirin to thin the blood, but did have a ‘tilt’ when starting the chemo drug hydroxy as symptoms hit making me feel rubbish, abit scared, and out of control. We all react differently to medication and I found symptoms easing off after about 8 weeks (I’m 8 months in now and pretty much ok)
As others have said, if your dad doesn’t tolerate the drug, his doctors will look at alternatives.
Please try not to get too panicky - remember your dad will always be monitored regularly - and for any info go to MPN voice ( not any of the ‘screaming sensationalist’ web which would scare the pants off anyone )!!
Wishing you all the very best going forward. Anne-Marie.
I’m sorry your post seems to have been hijacked and gone off on another thread, this often happens on the forum.
Keep on being there for your dad, it will be appreciated.
I have 3 daughters and have had PV for the last 12 years. I explained it to all of them in the beginning. My youngest daughter takes the most interest, like you, wanted to know everything, and attended a living with MPN’s day in London with me 4 years ago. She is always concerned with how I am (perhaps because I have looked after my grandson , now my granddaughter, one day per week while she works for the last 3 years 😂 ) the others care but don’t always think to ask how I am. They just see me carrying on with life and doing all the things I want to do. Outwardly I just look and act just the same as before, they don’t see me falling asleep on the sofa at 6pm!
Your dad is probably taking Hydroxicarbamde, I have taken this for the last 5 years with no side effects but it doesn’t suit everyone and there are alternatives so you could ask the Heam at your next visit.
Hello Katie, welcome to our forum, I can only add to the above words of wisdom, that your dad is very lucky that you are with him every step of the way with his journey of ET. Please email me at maz.cd@mpnvoice.org.uk if you would like to have any of our booklets. And do look at the website mpnvoice.org.uk, you can trust the information on there. Best wishes, Maz
Thanks again for everyones responses, it really is comforting to know people are about to talk to. Thank you all who have taken the time to talk, i cant tell you how much i appreciate it and will keep referring back to this thread. Katie.
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