PV at 76 years of age

[Sandy071]

Hi.. My Mother has just been diagnosed with PV and i am really scared, Balling my eyes out writing this.. I have done some research and seems many younger people can cope with this for a long time. However, she is 76 and i am worried because there is little information i can find about PV over 70. I read somewhere that outcomes could be poor at this age. She has always been healthy and only has some symptoms of fatigue and sometimes feeling hot. I assume it's early stage but wont know for sure until test results are complete. How long can she live. Is 10 years still possible if it early diagnosis? Thankyou

[bordeauxgirl]

Hi Sandy, Please don't let yourself get into a tizzy over mum's age, I am 75 and had PV for several years now , my Haematologist told me that we can lead an almost normal life span , ok we all get the tiredness, sometime extreme, I have just got back from shopping and told my husband to get his own lunch cos I was going to sit down and relax. I have puritis along (itchy rash) but apart from that not much else. So keep calm and carry on , as they say, you'll both cope. Sending e-hugs to get you on your way, June

[Sandy071 in reply to bordeauxgirl]

thanks so much.

[Manouche]

There’s no reason to think she won’t reach 100 with the right treatment !

[Inca]

I have had P V since just before my 70 th B /day. I am now 80 .I kept my normal life with my horses &dogs ,work as proff sculptor & artist.

Yes there are dreadful fatigue days for which the only cure is rest, there are other problems of course,but keeping positive is essential,learning to keep rest times as well as being normally active is essential.All scary at first I know,but keep up with this great site,it's an enormous help.Best Wishes to your mum and yourself....don't worry...all will be well.I am treated in France,so I had the medical language to come to terms with.....I coped and have good medics practically friends now after 11 yrs!!!!Keep Strong !

Sally.

[Sandy071 in reply to Inca]

Thanks for sharing, that makes me feel a bit better. We are in Australia so my mum should get the best of treatments and care here. I hope she can have many years too. My best wishes to you too.

[Mazcd Partner MPNVoice]

Hello Sandy, completely understandable that you are feeling upset about your mother's diagnosis, it is a very scary time when you hear the news about having a MPN. I would advise that you read the information on our website mpnvoice.org.uk and also look at some of the videos we have on there, and read some of the real stories, I am sure they will help you.

I can also recommend the MPN Alliance Australia website mpnallianceaustralia.org.au/

Best wishes, Maz

[mark382]

Yes it can be very worrying. When I look back to diagnosis, I suppose I was lucky in that both my GP and Haematologist said it was PV and that I make too many red blood cells and left it at that. As I had total faith in my GP and haematologist I just go along with what they said - 3 monthly appointments aspirin and venesections as and when.

Not aware that age has anything to worry about. I've had it 12 years and now 64. Dr Google isn't a good place to look as a lot of the information is out of date. As Maz says look at MPN Voice as this is verified by medics. I'm sure she'll be fine once on the treatment road.

[katiewalsh]

Hi Sandy, I think most of us have panicked when first diagnosed. Then, before long, we realize that it’s not as awful as we feared. The information you read about outcomes being poor at her age isn’t at all an accurate way to determine what to expect for your Mom. When they gather data on all people it includes those who are in very poor health with significant medical problems, unrelated to their MPN. It also includes those who never received good medical treatment for their MPN. The important thing is to get a good doctor. If there are no MPN specialists near you, some doctors are willing to oversee your treatment from a distance, others will meet with you and then coordinate care with your local hematologist. She’s lucky to have such a wonderful daughter. And I suspect you feel the same about her. As my MPN doctor told me, just continue to enjoy your lives. He actually told me I’m most likely going to die from something other than my MPN. Feel free to post any questions or concerns here. Katie

[Twinart]

Hi Sandy It is very scary at first but things will settle down for you both. I’m nearly 70 and have had PV for a year. I’m sure one of the other things wrong with me will see me off rather than my PV. There are lots of people on this site with lots of experience who will help you. Your mum is very lucky to have you caring about her.

[Bluetop]

Hi Sandy, I am 69 and was diagnosed with PV 4 years ago. I am treated with asprin and hydroxycarbmide and am very lucky in that I have virtually no symptoms. I lead a very active retirement. I would strongly recommend the MPN website. That, together with this forum are a huge resource. I totally understand your shock and conern but learning more about MPNs, I found was so useful. I hope you get your test results soon.

[Mal42]

Hi Sandy. It is very worrying to get a diagnosis like this for yourself or a loved one. I was diagnosed with PV 5 years ago aged 74. I was very scared. Everyone is different in their treatment needs. There are management issues. I was on venesections, then on chemo pills, again this was a shock, but I settled in to it, my new normal. The management with your health team gets to be a way of life, are you under a haematologist? I have other health issues, at nearly 79 a very common situation. This is a cancer that is easily managed and your mum has many years yet. Hugs and reassurance to you both.

Mal

[Sandy071]

Thanks to everyone for the kind words and info. It's helped me feel a bit better and understand that it's not as bad as i imagined at first. All the best to everyone who replied!

[hunter5582]

What you are describing sounds like on of the more indolent variants of PV. We are all different in how our MPN presents. There is a wide range of severity of symptoms. If you look at the longevity research, you will like see an average of 14 years from point of diagnosis. Take this with a HUGE grain of salt as it is an average across cases/ages/risk groups.

There are a variety of treatment approaches, so take the time to learn and understand the different options and approaches. Each MPN patient needs an individualized plan of care from a MPN-expert provider. Do be aware that many hematologists lack the expertise to provide optimal care for MPNs. It is worth whatever it takes to consult with a MPN-Specialist. Here is a list. mpnforum.com/list-hem./

Here are some presentations worth watching

vjhemonc.com/video/4kie_7r9...

mpninfo.org/conferences/201...

FYI - I have had a MPN for over 30 years. Was ET - progressed to PV. Still alive and kicking! Age 65 and planning to keep chugging along despite the occasional interesting and unique learning opportunity (aka challanges).

[Copurnicus]

Hi Sandy,

I went through the exact same thing with my mother who was diagnosed with PV at age 70, but I didn't find out what she had until 10 years down the road. She shrugged it off as "some blood thing" and when I pressed her she would pretend she didn't know the name of it but it wasn't serious and she just made too many red blood cells. She played it down so I wouldn't obsessively worry and study up on it (she had a PhD in public health). Though she was fatigued, she took on a new job at age 70 of serving as a tax preparer - when she was 80 she told me she particularly liked working with the elderly because they really didn't need the help but did need someone to talk to. She had a good productive 10 years before her PV morphed into an acute leukemia for which she refused treatment. I have the genes (leukemias run in my family) so have been reading - current research focuses on what causes the genes to switch on and to move from one stage to another. More and more the cause seems to be inflammation. There's a bit of a positive in knowing that as there are steps one can take to reduce inflammation. So, life moves on and do the best you can to enjoy your time and help others.

[jillydabrat]

Hi Sandy, it sounds as though you have been reading Dr Google. BIG mistake. There are a lot of scaremongerers out there that write a lot of twaddle. You will have read other responses on here from people in your mum's age group and it is these people you should be listening to and nobody else. Your mum will be on medication and maybe venosection but this should not interfere with her life or life span. Everybody on here lives with some form of MPN and live normal lives so please hun, stop fretting and stop googling because you will only get yourself upset reading other people's rubbish who don't have a clue what it is like to live with this condition. Give mum a squeeze and go about your life as normal xx

[falconered53]

Hi Sandy,

I understand your concern and sympathize. I am 74 years old and was diagnosed with PV eight years ago. At first, after reading everything I could find on Google (big mistake!) I was convinced I had 13 years to live. That's only 5 years away now, yikes. But after getting real medical advice and support, and following the latest research, I think I can live longer than that and live a good lifestyle also. It's very important to do everything you can to prevent heart attack, stroke and other thrombosis. The docs can get your mother on the right meds and protocols for her situation. Meanwhile she can maintain a healthy diet and exercise regimen and avoid risky behaviors. Be sure your mom finds a doctor who really knows MPNs, ask for a specialist to be sure.

Symptoms vary a lot from person to person and even over time. I had no symptoms at all for 5 years. Then fatigue started, numbness in feet, some headaches. Started on hydroxyurea last November and symptoms improved, as well as blood counts. It is usually prescribed for PV over 60 crowd but I resisted for a while. Now I know how much it has helped I wish I'd started on it sooner. So be open-minded.

I had to have my gallbladder removed two weeks ago and all went without a hitch and I was up and about right away. So PV is not a death sentence. Help your mom to live whatever years she has with joy!

Finally watch any conferences and symposiums you can online. You'll learn so much.

Stay well,

Ellen

[Jennytheb]

Hi Sandy, I’m 69 and been diagnosed ) years. When I have attended clinic I am often one of the younger ones. Personally I don’t think age is a detriment but hope she had a good haematologist who is sure to look after her! I was also assigned a Marie curie nurse who looks after me too. Try not to worry xxx

[socrates_8]

Hey Sandy...

My name is Steve and I am based in Sydney, Australia, where we do actually have our own MPN-MATE.COM Forum we call MATES:

mpn-mate.com/forum/viewforu...

This is the only MPN Patient's Forum website in Australia, at the moment...

Naturally, we list all the information about all of the various MPNs:

mpn-mate.com/mpns-what-are-...

MPN Services Page also Lists MPN Specialists in Australia:

mpn-mate.com/services-4/

We also have regular ZOOM Cafe Catchups that you are most welcome to attend also on your mum's behalf...

MATES is a FREE service of course, and you are welcome to join and enter an Introductory POST about yourself and your mum at any time...

Actually, I was made aware of you by another lovely lady who is a MATES member, and who is roughly your mum's age, and who asked me to come and say hi ...

Anyways, very best wishes and please do let me know if I can be of any assistance at any time...

Stay safe & well

Steven

(Sydney)

[Sandy071]

Thanks so much again everybody and thanks Steven for the link. I will definitely tell her about that site so that she can meet others like her in Australia. Much appreciated!