It has taken me some time to write this... but I hope my husband’s journey with MPN is perceived overall a message hope to others. He was diagnosed with PV aged 46 and had a great quality of life for 28 years ,needing only phlebotomy -initially weekly but eventually every six weeks or so . He progressed to Myelofibrosis aged 74 and had a reasonable quality of life for a few years. Many people had no idea he had blood cancer and looked incredulous if we mentioned it. We had a very active social life and enjoyed walking. He gradually had to pace himself and manage his fatigue which enabled him to enjoy life very much. Starting Ruxolitinib after a couple of years was a life saver but in the last two years things became more challenging and eventually he became transfusion dependent aged 80. It was only in the last six weeks of his life that the disease became more troublesome. Sadly he passed away in December and would’ve been 81 this month. I am thankful for all the wonderful years we had together.
He never worried about his illness and was not interested in being given a lot of information. I wanted to know as much as possible and I’m certain my knowledge saved him on a few occasions eg. getting to hospital promptly when there were signs of infection and being given intravenous antibiotics. My advice to others is to be informed and proactive in seeking treatment if needed but endeavour not to let worries about the future spoil the precious time you have. It is challenging living with uncertainty but crucial to live in the moment and enjoy the life you have to the full.
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Fika500
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So sorry to hear your sad news. It seems to me your husband was very lucky to have you by his side and both together were able to enjoy life. Thank you for sharing his insight to life and your knowledge. I have been diagnosed with PV for 5 years I’m 60 now. Sometimes I worry about what the future holds. I have a lovely supportive husband and family. Your post actually made me cry as I fully understand what you are saying. So true. Thank you again and take care. Lots of love x
Hi Joe500, how true your message is and one that I too have tried to help some folk with in the past few years having been diagnosed Primary MF in 2006 age 45 and spent my next 5 or 6 years worrying too much about it to actually enjoy what in effect were some of my best years health wise since. Fortunately I was young enough and fit enough to go down the SCT route. As in your husbands case many family, friends and others didn't think I had a serious blood cancer as most of the time I looked 'too well'. Unlike your husband I liked to know as much as I could about my MF.
I am very sorry for your loss but glad that your husband didn't let his PV/MF hold him back.
My very sincere condolences to you on your loss . It’s wonderful that you both had such an active life together and your husband was fortunate he had you to look out for him regarding his MPN
I hope you will still keep in touch with our forum
Hi. So sorry to hear about your husband, but lovely to hear what kind of a man he was and how he dealt so positively with his illness. Take care and thank you for sharing
Hi , thank you so much for posting about your husband’s journey with PV . For some one like myself who has just been diagnosed with the the same MPN it is truly inspirational and gives hope and strength to all of us .
My deepest condolences for your loss. It sounds like he always had a positive attitude about his illness and a loving wife to help him get through the rough times. I hope one day your sadness will be replaced by the happy memories you shared with him.
How courageous for you both to live through and with this condition. You have given very inciteful advice to us who have years yet to live. Best to you.
My condolences and thanks for your strength and thoughtfulness for your post. I hope you are well supported and that your wonderful memories bring you comfort.
Take care of yourself and thank you again for your post
Thank you for sharing this, so sorry to hear of his passing. To know how he was able to manage life for so long and with quite a lot of quality it seems will be very heartening to many who are on his journey.
So sorry for your loss ☹️ one amazing lady for sharing and giving us all hope and to make the most of our good days, your husband was so lucky to have you by his side!
So sorry for your sad loss Joe500. Thank you for sharing your husband’s story with us. It was both inspiring and comforting to those of us who are on the same journey. Take good care of yourself.
Thank you so much for sharing your experience. I am sure it will provide comfort, reassurance and inspiration for many on this forum. With sincerest condolences. Look after yourself.
Certainly sounds like a man who lived his life to the full and didn't let his condition stop him enjoying life. I think you hit the nail on the head when you say " be proactive in seeking treatment when the need arises but as you say it is crucial that you live in the moment and not worrying about what may or may not happen in the future stop you living life to the full. Thank you for your inspiring story on your Husband and send condolences for your sad loss. Tina.xx🤗
I’m sorry to hear the sad news of your husband. I hope you continue to find the inner strength to deal with this difficult chapter of your life. Thank you so much for your message. It does give many of us hope. I’m 36 years old and have a very young daughter ,and diagnosed with ET and I sometimes think will it be the worry that will be the end of me. But it’s exactly as you said it, not to let worries about the future spoil the time you that I have. I’m very touched at your message it means a lot to many of us. Thank you 🥰
Heartfelt condolences to you. Thank you for sharing his story. There has been a lot of talk on the forum about life expectancy and quality of life recently. Your Husband is testament to living life well and not letting a chronic illness define him. 80 is a brilliant age and I hope some of the younger MPNer’s read your lovely tribute and are heartened by a long life well spent. I’m sorry for your loss. He sounds like a very special man x
Thank you for taking the time and care to write to us about your husband. First you generously educated yourself so you could keep your husband healthy & now you’re unselfishly educating us during what must be a very difficult time. I hope your grief is eased a little by knowing what a wonderful life you gave your husband while he was here with you. Thank you for being such a wonderful person. Be gentle with yourself. Katie
Thank you for your beautiful message to us all and your courage writing about your husband. What wonderful years and memories you share.Please always feel you can write to us all and let us know how you feel along life s journey. Each day is a precious day and time for us all to be kind . Take care of yourself.
Dear Joe500, so very sorry for your loss. Thank you for sharing this with us all, it is very inspiring. Take care of yourself, with very best wishes, Maz x
So sorry for your loss, I am completely with you on being informed, the consultants really don't want to give much information away at all! My gorgeous wife could would have died many times over if I hadn't been proactive in getting more done at the right times. I can see things from their perspective too, some are not very concerned about what actually happens to a patient, as they know that their backside is covered in the event that the brown stuff hits the fan. So information in the hands of a patient or spouse is an unwanted commodity in their eyes. My wife has MF and no spleen now. Along with high BP due to a Portal vein thrombosis, also a kidney that has basically died. Suffering from GI bleeds too often, and poorly investigated at best. I just hope she gets to the age your husband reached (at least). Only another 17 years to go!!👍
Thank you again for your message, information is king.
I'm sad to hear of your husband's passing.You have been a wonderful partner to have found out so much about his illness.He tried to lead his life as a normal person disregarding his MF.I too have MF and for a long spell had a great time.
I have other conditions too Bronchiectasis and recently Rheumatoid arthritis but like your husband won't be beaten.Thank you for sharing his life with an MPN and his positivity.
Dear Joe, so sorry for your loss. You had a really loving and caring relationship that is inspiring.Thank you very much for sharing this moving message with us. ❤️
Thank you for finding the strength to write this message of hope. It is valuable and I certainly feel better for it. Life is indeed precious and having a condition like this does open one’s eyes to how important the present is . Sorry for your loss 🤗❤️
I am so sorry for your loss. Your husband sounds like he lived And enjoyed every moment. As someone diagnosed with ET in my 30s seeing this is very comforting and I appreciate you sharing
Dear Joe500,I'm sorry for your loss and wish you the best.
Thank you for sharing your story with so many of us that need reassurance that this is a manageable in life. I'm 49, recently diagnosed from ET to PV and going on my 3rd phlebotomy in 3 weeks. Just started Hydroxyurea as well. So this gives me hope during a dark time.
Thank you for all these lovely replies which are a great comfort to me. I’m so glad it is clear what a special man he was and the love and life we shared was so precious. I wish you all the same love and joy of living in your lives .
No, thank you, as someone said in one of the replies, their as been a lot of posts recently on Mpn's and average survival rates. Your story should serve as a testement that you can lead a good fulfilling life to the max. Thank and much love and hugs to you. Tina.xx❤
May his memory always be a blessing and thank you for sharing. Your message is one I am taking to heart - live in the moment and enjoy as much as possible!
Thank you for sharing Joe's story and your own as a partner and caregiver to a patient with an MPN. I send my heart felt sympathies for your loss. Your marriage sounds as though it was a wonderful partnership. I whole-heartedly agree with your advice about being well educated, current with developments in medicine and science, advocating for ourselves and our partners and being proactive. What you wrote about the challenge of uncertainty was beautiful. I realized recently - during this pandemic - that we all live with a background delusion that life is certain in some way. This past year has shown us that it really isn't. My conclusion is much like yours - to live in the moment - one day at a time - so as to enjoy life to the fullest. All human beings have unknown expiration dates. Sending a hug across the miles from Los Angeles, where I am the PV patient married to a wonderful, extraordinary man for 40 years.
Thank you for sharing his journey with us. It is both inspiring and hopeful. He was truly blessed to have you in his life and as his companion on this journey. Please know you and your family will be in thoughts and prayers. All the best yo you and yours.
Thank you for your message of living. We are all born with an expiration date. But we don’t know what it is, so it’s important to enjoy all the moments we have. My condolences to you and your family.
Thank you for such a brave but also in many ways a positive post at a very sad time. I'm so sorry for your loss. You and your husband sounded a great team and with your support he was able to live well with his mpn. A wonderful inspiration to the rest of us - thank you again.
So sorry to hear of your loss. But thank you for sharing this and for the positive messages. It sounds as though you managed the illness between you. My sincere condolences for your loss.
So sorry for your loss. Thank you for thinking about the other MPNers and the advice to make sure we know as much as we can of our blood cancers. Condolences. xx
I am so very sorry for your loss and appreciate hearing your husbands story of hope and a life well lived. I am in the process of being diagnosed and it looks like PV. Taking the time to write this during such a time of loss for you...means a great deal. Please take good care of yourself and keep in touch
So sorry for your recent loss of your husband and I know this post was hard to write, I can tell there was a lot of love, caring, and good times shared together through many years, and your husband was fortunate to have you. Thank you for sharing your this journey with all of us as it gives us hope and teaches us not to take anything in life for granted. Prayers and hugs to you
I’m really sorry to hear of your recent and profound loss. Your husband was very lucky to have you advocating for him. I hope you find peace, and thank you for sharing this with us.
Thank you for taking the time to write, especially when mourning.
It is heart warming and comforting to know that he did not let an MPN overwhelm his world, and that you lived a life successfully balancing PV with the rest of living.
For those of us newly diagnosed with an MPN, it a relief to hear that MPN's are not quite the death knell one immediately thinks of when hearing the cancer word.
i'm so sorry for your loss. Thank you for taking the time to let us know and describe your husband's full life. It sounds like the two of you were wonderful partners to each other. I appreciate everything you've said about how to live well with illness. Take good care. Kim
So sorry to hear this sad news.My husband was 41 diagnosed with PV he had phlembtomies and asprin for two years then went on hydroxy. After two years on this he was absolutely exhausted and was losing the will to go on .
So in 2018 he had a bone marrow biopsy that revealed primary MF so we pushed and pushed to get him on to ruxolitanib I must say it's been a life changer for him.
His quality of life is back to normal.
He's now 49 this year we hope and pray his medication lasts a long time.
These blood cancers are becoming more popular now in younger people.
We try not to worry about the future as we've seen the stem cell transplant team and he's had all tests done this was so daunting to us .
Thank you for taking the time to share your husband’s story with us during this difficult time of your life Joe500. It reminds me to focus on the possibilities rather than the limitations of our conditions. I hope you can find solace in knowing that your steadfast support was an incredible blessing in your husband’s journey. Take good care.
Very sorry for your loss. i hope the memories of good times outway the bad.
Thank you very much for this post, it has lifted my spirits emensely and given me great hope, and good advice. i see many parallels, as i am 46 and diagnosed with PV 4 months ago. My awesome partner sounds just like you researching and finding as much info as possible, while i try to ignore it.
I wish you all the best and thank you for the post
Sorry for your loss, its a great message you give though that will give hope to people, especially newly diagnosed that there is life with an MPN diagnosis.
I'm so very sorry for your loss. But equally grateful that you shared your story of love and perseverance. Nothing will take the place of your beloved husband but this amazing forum (which I have recently become a part of) is here for you. Sending love and virtual hugs to you.
Hi. So sorry for your loss. I am very grateful that you took the time to post. I am so pleased that you led a happy and, for the most part, a healthy life. And that has been encouraging to hear. Your husband sounds like a proud man. I am sure you did save him. We all need the support of loved ones around us, in the way that you supported your husband.
I am so sorry to hear of the passing of your beloved Husband, he was indeed blessed to have the support of such a caring Wife. I was diagnosed with PV aged 50 sixteen years ago and 18 months ago was diagnosed pre MF. Like your Husband I don't worry over much about the future preferring to deal with things as they happen while at the same time trying to keep well and keep up with has is happening.
I wish you the very best for the future and you should take solace in the fact that together you travelled the MPN journey for so long.
So sorry you have lost your life partner. And thank you for taking the time in your grief to write this post. It will be helpful to so many people on this site, especially given some of the recent concerns that have been posted. It is so thoughtful of you to post such a positive message. Best wishes.
Sorry to hear of your loss. I have PV (stroke and diagnosed Feb. 2018, aged 58) and it is managed by flebotomy and your husband's story is uplifting as he had a good quality of life for 28 years. Gives me hope for tge future. Thank you for sharing xx Catrin
So sorry for your loss of your husband , I am sure your thirst for knowledge helped to keep him on a good path to the get the best from his life even though he had 'our special' disease. My husband can't understand why I want to know the nitty gritty of my PV. My life is important in keeping him on the health path with 4th stage heart failure. But keep smiling and have a good life yourself.
Hi Joe - sincere condolences to you & your family .It sounds like you had an amazing life together & you were his 'rock'.I hope you enjoy the rest of your life too & at least your husband's treatment did the trick for many years.Very encouraging to the rest of us!
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