Happy Wednesday! I'm just out for a day to Brimingham. Looking at the landscape as I travel North..
I wanted to share a few feelings and maybe to see how others maintain a positive outlook.
When I was first diagnosed with ET I went through the shock and made some adjustments to my outlook and goals but I got to a place where I felt ok about things. As many have said here, it is a bit like having other long term conditions like diabetes and I was in a happy rhythm.
Since I received the subsequent diagnosis of MF I have found it harder to let this settle. On the positive side I am focused on maintaining overall good health: exercise got to be fitter than I was 20 years ago; diet really good and I still allow the odd pastry/ glass if wine ; time with family is truly a gift every day and so I cherish it.
On the other hand I find that when I'm not busy, busy, busy... my mind turns to the worry beads... what if this gets worse? When will it get worse and in what way? how long do I really have? How can I prepare my son? When should I do that? How will my husband manage? So many questions and really I think I'm just torturing myself..
I'm thinking about counselling but I really don't know how I will find peace with this. I am just still very angry.
Sorry this is such a downer... How do you cope ? Have you found acceptance or do you just box it up and put it away? Really keen to understand what techniques you find helpful as I am up for anything... even if it is just a distraction !
Wishing you all a good day.
Katherine
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Mrs_Average
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Just want to say I totally understand where you are coming from as my ET changed to MDS .
Like you I mostly have a positive outlook but I have my down days too and to. be honest I would find maintaining a positive outlook all the time exhausting !
The one small thing I’ve found is some very simple mindfulness techniques.
I found a little book in the Works called Mindfulness Plain and simple by Oli Doyle and it’s helpful .
Sorry to hear you are feeling down. What drug regime are you on?
As others have said, people with low risk MF can live for over 20 years.
There are great strides bring made in terms of research into new drugs but also for Stem Cell Transplant. In this respect, there appears to have been a recent major breakthrough in terms of suppressing Graft Host rejection, the greatest and most debilitating risk.
If, worst case, you require a SCT, the odds off a successful outcome should be good and extremely good by the time you actually require it! Especially in view of your age and keep fit regime/good diet. So please don’t worry about dying early.
Do you have a good Hem? You could sound him out about combining Pegasys and Ruxo (I believe there has been a recent successful trial) plus whether there is any chance you can get onto a trial for RG7388? (I’ve posted about RG7388).
Just wanted to thank you for your post. Your way of thinking this through and laying out the positive advances has really helped me feel calmer. I think the reminder that there us so much coming up in medicine now and that hopefully this gives us all more options is a great way to view this.
I know just how you feel. I too have good and bad days and suffer all the same thoughts you have. My three children (late teens and early 20s) still don't know I have MF and I dread the day I will have to tell them.
I hope you've found encouraging what Paul has said - there is so much going on in terms of research. You and I are of similar ages and I just hope that if or when our condition deteriorates there will be a new treatment out there. And, as Paul says, a lot is going on in terms of research into reducing the risks of SCT.
I should have been a bit clearer. The mortal risk for all of us is advanced MF. At this point, will we be too old for SCT? My philosophy, at age 62, is that I will do every thing I can to stay fit and healthy so that in best psychical condition to cope with a SCT IF required. Plus I want to adopt the drug regime that best slows down progression, hence delaying any requirement for a SCT since every passing years further enhances survival rates.
And of course, research is currently at a very exciting stage. It now focusing more on targeting the real culprit (imo the last few years have focussed too much on reducing Allele Burden) so we could be on the cusp of a real breakthrough.
My best guess is that there will be a major breakthrough within the next 5 years re halting progression for the majority if not all of us (it might be RG7388, if not something similar/supplementary) and this will buy time for even better medications to be discovered. All the while, advances in SCT will virtually eliminate risk for someone of your age if healthy and fit.
If your progression is typical of low risk MF (as in very low chance of requiring SCT over next 5 years) my opinion is that a progression halting drug will negate any need for a SCT. But if, worst case, you do require a SCT say in 2-3 years, your survival chances and expectations of a long life thereafter are very good.
I’ve found a few things help when I’m really worrying about something. The fact that you’re angry is good and also healthy. But you can’t let yourself stay angry too long as it’s harmful to your health. I think your suggesting you might try counseling is excellent. I’m a big believer (as it’s helped me with crises in life) as have medications and keeping a gratitude journal. Scientific research has been able to measure the size of the part of your brain that is able to experience pleasure. And the bigger it gets, the more joy or happiness you can experience. They now know that one way to strengthen that part of your brain is keeping a gratitude journal. I know it sounds phony but if you research this you’ll find out it’s true. It’s been done at a number of places in the U.S. Keeping a gratitude journal simply means writing down daily something or things that you experienced that day that we’re good. It can be the kindness of a stranger, a beautiful day, the son on your face, the love of a family member, etc. If you do this daily for a few months I believe you will feel more joy and less stress than you currently feel. And it’s cheap and easy and won’t hurt you trying it. I hope you know I do not consider your situation at all easy. I too would be very frightened. I think Paul’s valuable information is encouraging for us all and I hope you can gain a sense of greater calmness in the near future. As Aimee says, I’m sending you an e-hug. Katie
Thank you for your reply. Some great ideas in here. I used to keep a journal, but I think a reminder to keep up the positive reinforcements will be good.
Also got a sample of the book which I think I'll give a go.
Much of your story sounds most familiar to me, as I too was initially diagnosed as ET, which later changed to MF after a BMB.
It is extremely difficult to quantify a prognostic value of our MPNs as we are all individuals w/ many variables to consider of course...
However, of late, I have been suffering from rather excruciating bone/joint & especially back pain. In the end, my GP prescribed me morphine to overcome these issues. Thankfully, it has all settled down a little now...
Personally, I have been pro-active about my condition since its inception, (May 2016), and at times I do struggle to remain so ... but I do!
New methods & treatments are constantly being discovered, & I am all for trying a variety of trials: Clinical or self experimental... Lesson here... Stay optimistic!
There are other gene mutation tests that can be undertaken, (for a price of course), to see if one might have one or more of other known cellular mutations that can provide some prognostic approximations...
I myself am now considering having those tests done for myself...
However, I also harbour a philosophical penchant, & hence... I am presently weighing up the pros - v - cons etc...
(DO I really want to know more?)
In any event, what are those mutations I can hear you say... (almost
Here is an excerpt of that paper:
"Dr. Tefferi says he and his colleagues incorporated new genetic tests in the
model for gene mutations including JAK2, CALR, and MPL, which are known to
drive myelofibrosis. He says the new model also tests for the presence or
absence of high risk
mutations such as ASXL1 and SRSF2. "Our model is also
unique in that we developed it for patients who are age 70 years or younger
who may still be candidates for a stem cell transplant to treat their disease,"
Dr. Tefferi says."
Best wishes Katherine
Steve
(Sydney)
M: +61 2 467 899 801
Happy to chat...
Reference
Giulio Genovese, 2006. Clonal Hematopoiesis and Blood-Cancer Risk Inferred from Blood DNA Sequence. New England Medical Jounal, 2014; 371:pp. 2477-87. DOI: 10.1056/NEJMoa1409405
n.a. 2017. New genetic model identified for predicting outcomes in patients with primary myelofibrosis. December 11, 2017. Accessed from:
Hi Steve my friend , , an interesting response . I picked up on 'do I want to know more?' As i found out it can be a double edge sword. Early on in my diagnosis I was referred to a then MF 'expert' in Manchester who is long since retired. After revolving my symptom burden and test results he advised I would need a Bone Marrow Transplant within 3 to 5 years or sooner if things took a turn downwards. So you can imagine I then had this timescale locked in.
Well 3 and 4 years came and went and as the 5th year rolled by I thought I'm on borrowed time here (I was still on Hydroxycarbamide as it kept counts in order). So after year 6 passed without incident I was able to cope better
So sometimes too much knowledge can be dangerous but I know you're sensible and like to deal in facts. Trouble is MF prognosis isn't easy or maybe impossible to accurately predict.
Yes, I agree with those pearls of wisdom completely...
Those cellular mutation tests are approximations, as I mentioned.
However, I am also very glad that Katherine has the benefit of your experience to aid & assist her feelings of anger/anxiety...
And of course Chris, you are living proof that MF can be a slow burn & that in many cases people can & do live near normal lives. As I mentioned above, we are all just a tad different from one another.
Hence, my own reluctance in considering whether or not I want or really need to know more... (?)
These days I am simply endeavouring to tell myself to enjoy my life to the very best of my ability. Who really knows much about so-called time-frames?
Katherine, of course we can all empathise & relate with your feelings of anger and frustration, and those feelings of one being locked into some uncertain kind of Limbo, as Chris mentioned earlier.
However, some of us, (myself included), likes to learn as much about our MPN progressions as might be possible. Understanding my MPN gives me a sense of calm that I would not have otherwise, in my view...
NB** - And just by the way Katherine, I have just noticed my phone number here in Oz attached to my post, and I am really not sure why I would have provided you with my cell number? Possibly just a tad reflexive of me (?)
However, as I said also, happy to chat more any time... But I am sure that the MPN Voice Forum will work just fine too...
Hi Katherine, like many on here I can totally relate to how you are feeling and as somebody who has lived with MF for many years prior to my SCT I feel I ought to be able to calm your fears and anxiety, but in truth I can't do that fully. You've already had some helpful and positive responses and as like I wanted you are looking for ways to get you through those tough days when the uncertainty of what you're facing overwhelms you as it did and still sometimes does with me.
It's something I really struggled with and I did seek counselling which helps bring it into the open but it also makes you focus on it and though it doesn't provide any answers as such it provides chance to explore ways of moving forward in a more positive frame of mind. So I wouldn't dismiss it.
It's hard coz you feel like you're life is in limbo as you're waiting for something to happen. I gradually learned to accept my MF but it took a long time. If I could shortcut that for you I would. I don't think you can box it away., we aren't robots after all. The thing with MF is its a often a slow burner so it gives you time to plan as any adverse changes are usually over a period of time. Helen mentioned Mindfulness and I have been to a few sessions . Relaxation techniques are really helpful to manage stress so well worth looking into.
Sorry I haven't been much help but it goes to show thers no easy solutions. I had time on my hands but if i could have carried on working i think it would have kept my mind busy and im sure it helps. .As others say if you have low risk MF it should be many years before you need to consider tackling it head on so in hindsight I wish I'd made more of those years and hadn't stressed quite as much as I did.
It is really helpful to gain different perspectives. I think you've nailed it on the head, I kind of want to move through the frustration, because really I feel very well apart from being tired a lot. My restriction comes from how I view the world and I feel less bold , more tentative. I really need to tackle the bear!
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MF , ET JAK2
What is your fatigue like and how does it effect your life ?
Working with fatigue and brain fog=PV
MF and low HGB
