How long ?

[indy22]

Don't know where to start! I have been diagnosed with secondary MF I am tired, aching joints, sweating, and sore heads I am kinship carer for my beautiful grandson who will be 8yr old in November he has been with me since he was a baby because both his parents are drug addicts!! Will I be here to see him grow into a man ? I need to be here for him he is my life and I his. I have put lots of work into making his life happy and trying to steer him in the right direction . It is only myself and him who live in my council house so I fear what will happen to him if I die . Sorry if this sounds morbid but I can't speak to any of my family about the thoughts in my head . I am 60 and apart from the side effects of MF and arthritis in my hands I feel I am otherwise ok, I will be starting medication in August but no idea what I will be put on .

[JediReject]

Hello indy, , sorry to read about your recent diagnosis and of the circumstances by which you are kinship carer for your young Grandson, I'm sure you are doing an amazing job raising him and I can tell he means the world to you.

Depending on a number of factors you will likely be prescribed Hydroxycarbamide or maybe Ruxolitinib. Or nothing at all if in a very early stage. But it sounds like you need something to help alleviate your symptoms.

As others will no doubt say there are new drugs being developed for MF so I'm sure you will be around for many years to come and see your Grandson flourish and develop into a fine young man under your loving care and guidance.

Good Luck with your appointment in August.

Regards - Chris

[indy22 in reply to JediReject]

Thank you so much for your reply feeling better already 😊

[Otterfield]

So sorry to hear this and it sounds like you have a number of other things going on too. I was diagnosed with post ET MF last year and felt utterly exhausted, but Ruxolitinib has really given me my life back. For example I now walk 3 miles a day (except in this heat!) Obviously I don't know what treatment you will receive but I promise that you can live well with MF. One very experienced consultant told me "People live for a long time with this " so please don't despair.

There is also the possibility of a stem cell transplant, I am having initial tests to check my suitability and there are a number of members who have had one.

Very best wishes, Jennie

[indy22 in reply to Otterfield]

Thanks Jenny 😊

[Cja1956]

Hi, Indy22, I was diagnosed with post Et Mf intermediate 1 in 2019. I’m also very tired all the time but with the proper treatment and all the new research, you should be around for a long time. Try to stay positive (easier said than done), try to find a support system for yourself. Keep us up to date. Sounds like you have a lovely grandson.

[indy22 in reply to Cja1956]

Thank you so much 💓 I am trying to keep positive also trying to eat healthy and short bursts of exercise , it helps having to run around after a 7 yr old 😄 I am going to write a list of questions for my appointment day which is the 10th August

[hunter5582]

Sorry to hear about the diagnosis, but do not despair, There are ways to manage MF and treatment options are improving. Symptom control is very important to quality of life with MPNs. There really are things that can help. It sounds like you have a lot to live for and ample reason to work to make things better. Your grandson is a blessing and he is blessed to have you in his life.

There are a number of treatment options to review. Hopefully you are already scheduled to see a MPN specialist rather than a regular hematologist. Most hematologists do not have the KSAs to provide optimal care for MF or other MPNs. Here is a list mpnforum.com/list-hem./ . Do whatever it takes to see one of these docs to ensure an optimal treatment plan.

I am glad to hear that you plan to go with a written list of questions. I go to all appointments with a written agenda now. It looks like this.

Treatment goals: Define for your doctor what your priorities are. Can be very specific at times. These are the goals I give all providers

1. Extend quality of life.

a. Protection of cognitive function is the single highest priority.

b. Protecting vision, hearing, other senses and mobility/physical abilities second priority

2. Extend length of life (only when QOL intact)

a. Philosophically – better to get less tx benefit and preserve QOL with any tx

b. My medical POAs have specific instructions regarding my care and when to d/c all tx.

Treatment Approach Define what your approach to treatment will be, You have to define your own approach and let providers know.

1. Combine Western Medicine with alternative/complimentary healing methods.

2. Rely on evidence-based practices.

3. Weigh the benefits and the risks of any treatment option.

a. Don’t make assumptions. If something can help you, it can also hurt you

b. Pay attention to how treatment approaches, medication/supplements interact

4. Look for underlying cause and links between medical issues.

5. Standard tx protocols are not always the correct approach for any specific person. Individualize tx based on individual medical profile.

6. Treat the whole person, not just the parts.

7. Use MPN-Expert Consultation to inform MPN tx & on other tx needs (e.g. surgery)

Updates/issues/Questions Always include a holistic review of what is going on, particularly with specialists. Write out the symptoms and issues you are having and a list of your questions.

Treatment Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Do a risk/benefit analysis of each treatment option. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.

I hope you find an optimal treatment plan ASAP. Please do let us know how your appointment goes and how you are doing.

[Anag in reply to hunter5582]

Amazing Hunter! I’ve always had a list, but this is so well organized! I’m copying it! 😁Anag

[indy22 in reply to hunter5582]

Hunter this Is perfect thank you 😊

[Wyebird in reply to hunter5582]

Lol your post should be printed and given out as a handout to all MPN newbies . It’s bril!

[Ettiel]

Hi Indy 22,I can add very little to what has been written above except to sympathise with your dilemma and urge you to take the advice offered. I was diagnosed with PV in 2015 which progressed to MF in 2019. I was quite shocked and it took me a while to adjust. However, after some months on Hydroxurea I was put on Ruxolitinib and, as described by Jennie above, it gave me my life back. Fatigue is the only symptom that bothers me now and I’m fine if I get enough rest. Also, with a wide range of new drugs coming on stream all the time, you have every hope of raising your lovely grandson to adulthood.

Good luck with your appointment next month! I’m sure you’ll be reassured once you start treatment which, hopefully, will relieve some of your symptoms.

Take care,

Ettiel 👍😀🌈

[Bluetop]

Sorry to hear about your diagnosis, but now that you have this, you can receive the right treatment and this will help relieve the sympotoms and manage the condition. I don't have MF myself so can't advise, except to say that it is noticeable the number of new drugs emerging. I am sure your grandson will help keep you positive and that you will be able to support and enjoy him for many years.

[Wyebird]

What an awful predicament you are in. I think you need to make sure you see an MPN specialist. I have ET so my needs and outcome are secondary to yours. I do hope you gets lots of support.Sending hugs.

[Leighcox85]

Iam so sorry to hear your story amd I know a lot of very wise people have already said most of what can be said medically I was diagnosed with primary mf in 2009 age 24 I had a newborn baby just 12 weeks at the time and a toddler and the thought of leaving them broke my heart so I know how you must be feeling what I can say is rux really helped me for a long time and up until recently I have been stable it’s not an easy life but it’s a life and I have been there for my boys they are now nearly 15 and 12 and iam going forward for sct I find thinking about the now and not the future helps me immensely if you ever want a chat please message me I don’t want you to feel alone what you’ve done for grandson is really special I was raised by my grandma for the same reasons and she means the world to me i hope this helps in some way stay strong you will be here to see him grow there’s so much nowdays hope is everything x

[Wyebird in reply to Leighcox85]

I’ve just read your post and want to wish you all the best. You’ve had it tough. Keep us posted on your SCT.

[Anag]

Dear Indy,

Glad you wrote and never be reluctant for any reason to poor your heart out to us. Your thoughts are so very valid! My daughter was 14 when I got my ET diagnosis at the time of my 3rd TIA. It took me a while to recover from the shock. Educating yourself is a great help!

The doctors will do their thing and there is so much you can do for your health! First and foremost is eating really good food and keeping stress at bay. Take your life day at a time and trust in God or the universe or whatever you believe in.

Organize yourself and look for financial and emotional support. Also, look to connect with other parents and possibilities for activities for your grandson that will give you time to yourself and strengthen him.

Please look at Sokrates’ messages to us all. He had stage 2 MF and was able to bring it to stage 1 through diet, exercise, etc. Hope to have helped.

Anag 😘

P.s. I always have a list.

Hunter’s is amazing. Take it to heart.

Also, make sure you feel good with your doctor. He/she should take time, take you seriously and answer your questions. If you don’t feel comfortable with your mon specialist after 1,2 or 3 visits, it may be a good idea to find a better one! This is your life and health. You’re not a number. 🙂

[indy22 in reply to Anag]

Thank you 😊 I am trying to be positive and this forum is helping me so much. The response from everyone has made me feel so good and not alone thank you all xx