After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections
I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
I progressed from PV ( after 12 years) to secondary AML in June of this year..Since then I have continued on hydroxycarbamide, but a reduced dose recently, I have fortnightly FBC and have chosen best supportive care. Recently I had my first blood transfusion.
I am a few years younger than you, have a wonderful supportive husband but no other family. Arthritis doesn’t help, I get tired easily, breathless and feel cold when my haemoglobin is lower. My rollator and wheelchair are vital largely due to arthritis.
When I was diagnosed my GP put me on the GSF for palliative care, which meant Iwas contacted by Macmillan. In addition to fortnightly appointments with my haematologist, I also see a palliative care consultant at the hospice. The haematologist also referred me to psychology which has been helpful.
There is no magic bullet for the mental health issues we face, it is an emotional roller coaster. I set my own boundaries. Sometimes I am able to talk to friends on the phone, but this is unpredictable and I have certainly refused visitors, especially if it is likely to be the last time I will see them. You will find that some people who are close to you are able to give you the support you need,, others just can’t handle the situation.
The only certainty in our situation is unpredictability, and that is hard to come to terms with.
Hi, thank you so much for your reply. What does GSF, stand for? Do you live in U.K. Were you offered any form of chemo treatment. Were you given any indication of life expectancy. We have a Maggie centre at the hospital, I was thinking of going there for help.
I wish you well Far, and thanks again xx
Gold standard framework, it is used in palliative care. I decided against having any chemotherapy treatment, a case of quality of life rather than quantity. Everyone has to make their own decisions. Prognosis can only ever be statistical. I am a retired chartered engineer so I’m comfortable with probability distributions, that understanding has helped me come to terms with my situation. I don’t live near a Maggie’s centre, but there is also help available from hospices in the U.K. Have you discussed your situation with your GP, ask for a face to face appointment to discuss your diagnosis.
I have Myelofibrosis and no experience of AML, but just want to remind you that we are all here to support you.
Thank you so much, all good wishes for your treatment. X
Hi Mysi, like Otterfield, I have MF but no experience with AML. I just wondered if there were any trials for patients in your situation & if that would interest you & also whether there might be Buddy’s available that Maz could link you up to. You may have friends who want to help & there are websites where you list a calendar of your needs & friends can sign up for specific tasks or days. It can include shopping, laundry, walking a dog, washing & drying your hair. Anything you can think of. And of course there might come a time you’d like to be read to by someone or have someone sit with you quietly. For panic attacks etc., I encourage you to seek professional help. Medications can help as can cognitive therapy but that will take awhile. You may want medication &/or therapy for depression & anxiety. Know that we are all here for you. Katie.
Hi Mysi, like the others have said we are all here for you. Post anytime you need support. Kindest regards Aime x
I am sorry to hear of your progression. Thankfully I have no experience of MF or AML, however I did have a family member who suffered from panic attacks which were so hard for him. The attacts seemed to be accepted by the professionals with no attempt to treat them. I wondered if you had considered psychotherapy to help you manage these. I do hope you find help with them
Dear Mysi,
I try to live my life on this earth doing the things I love, loving the people in my life and hoping to leave a positive feeling wherever I pass. I pray that I will stay as long as I can with my family, especially long enough to make sure my daughter stands strong in her life. This gives me peace!
Being thankful for all blessings, especially the endless little blessings we have can help us live in today and not in yesterday or tomorrow. I will pray for peace and love in your life, come what may. It’s wonderful that you’ve posted this subject. My heart and thoughts are with you right now, Mysi.
Please write whenever you feel like it. We are here for you. 🙂
Anag
Hi Mysi
I have only just seen your post. I too have MF and take 20mg of Ruxolitinib twice daily. In my 70's too, I have been taking various doses of Rux for 15 months and have just been recommended to have the EPO. I am so sorry to hear that your MF has mutated to AML, but we all need treatment at all stages. I too have frequent blood transfusions, roughly every six weeks - but it is only now having had an appointment with Prof. Harrison's team that I have been told that my breathlessness is caused by my blood! Everyone has blamed my asthma, but I knew that it was'nt . I am trying to get hold of my Consultant - or anyone - at my local hospital for further advise, but everything takes so long - and I feel like my life is slipping away.
Panic attacks - I would of thought is not something unusual for people with our conditions. My plan would be to keep as busy as you can - within the limitations of excessive fatigue. I have to plan each day to get through, prioritising things that are important to me. I try to look at the Forum regularly, so if you need to chat, just let me know.
Thinking of you -Bonnie xx
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