New diagnosis

[linard]

Hi , I have recently been diagnosed with mpn have started chemo tablets , few side effects nothing major so far ! All this was a bit of a shock and I am really struggling with it all, any tips to cope ?

[ksos]

Hi: It really can be a such shock at first, just getting used to the word 'cancer' suddenly becoming a part of your life. Breathing helps and reminding yourself that getting an MPN is not a death sentence.

FWIW... You may find you want to learn as much as you can or avoid any additional information at first -- either response is fine. There's no "right" way to navigate this and what matters the most is that you take care of yourself. There are lots and lots of posts on this site responding to people who have just gotten a new diagnosis and it might be helpful to search for those (search bar is up and to the right, try "new diagnosis") and read through the postings -- it will give you a lot of medical and experiential information.

I've done my share of internet searching on this, and that's been helpful in it's place. But it can also get overwhelming, so over time, I've founding that keeping a limit on that works best for me.

I think the thing that has helped me most is being in touch with all the wonderful people here who have shared thoughtful advice and their own experiences of living with MPNs -- and of living. Going through this with others who understand and sympathize -- and seeing how incredibly varied people's individual situations are -- has been a godsend.

Good luck to you. Let us know how you're doing.

Kim

[linard in reply to ksos]

Thankyou so much for your advice , just reading this I feel like someone understands ! I think this app is really going to help 😀

[Tylerdog1 in reply to linard]

Please don’t use Google to look up anything - most sites are inaccurate/out of date and are doom and gloom. You will find some very knowledgable people here to ask questions of and we all understand what you are going through, as having a MPN (blood cancer) is what we all have in common. It is a very manageable condition

[linard in reply to Tylerdog1]

Thankyou for your advice , this is all new 🙂

[wotan10 in reply to linard]

Greetings from Fleetwood England.

Welcolm to this safe space where you are not alone.

By now you will begin to understand that you are an individual with a set of symptoms that are rare.

Try not to panic as this is a normal reaction however it is how you respond that counts.

You will be monitored by your team who understand you completely. Don't Google as this only confuses the situation.

Keep a diary on your feelings and take some one with you on appointments

The trick is to get the right information pertaining to you, keep everything in perspective.

By now hopefully you will be able to navigate through the space to understand better.

Hope this helps.

[Applesnpears]

Linard

My advice would be to ask questions, get informed and contact/ meet other people who have MPNs

Hopefully your haematologist will have spoken to you about your condition, what to expect from your treatment and things to watch out for. There is a lot of information on the MPN Voice website that will give you more detail, and you can ask questions here.

I would also recommend attending a local MPN forum. Meeting other people with your condition is informative, reassuring and inspirational. Details on the MPN Voice website.

Having someone to attend hospital appointments with you can also be a great help. Moral support and an extra pair of ears is always useful.

[linard in reply to Applesnpears]

Thankyou for your advice , much appreciated 🙂

[mhos61]

Hi linard and welcome.

Which MPN do you have?

It is a shock at first. I would say educate yourself as much as possible, but from reputable sources such as MPN Voice. Also, research in bite size chunks. There is a lot to learn, and it can get quite confusing, a lot of strange medical terminology! If you don’t understand something, post a question, someone will try and help.

Mary

[Irishgal12]

Hi am recently diagnosed too I get u xx

[Jlah]

Hi. I found this forum so helpful when first diagnosed. The anxiety levels were high. I’ve read some of the advice given and agree. Use this place as a safe space and don’t over google. Mpn’s affect us all slightly differently. Some people have no symptoms and live a long life (my Nan has ET and lived to 97, my mum has it and us 75). So most important thing is to look after yourself and if you need time out - take it. Jacquie

[Wyebird]

Ksos has given a really good reply. Give yourself time . For me it’s taken years I think it depends on your symptoms side affects. So give yourself lots of time.

Love and hugs

[Lifam]

I agree with all the good advices above

Also we can help ourselves to eat healthy, watch intake of sodium, sugar and saturated fat, keep hydrated and active, all helps

[Cassie11]

All I would add is it didn't used to be classed as a cancer. It is still controversial. The chemo tabs get rid of excess platelets, not tumours. Welcome to this site.

[Mazcd Partner MPNVoice]

Hi Linard and welcome to our forum. I would suggest that you have a look at our website mpnvoice.org.uk it has lots of very useful information on there about MPNs, medications, side effects, etc. Take your time to learn about your MPN and also, try not to worry too much, I know that's easy to say, but as you will see from this forum, there are a lot of us living with MPNs and are doing ok. Kind regards, Maz

[MiltonBradley]

TIME! We all feel your pain This site is the best for encouragement All the questions, answers, words of encouragement posted here will get you through this difficult time. There are many that reply that have had an MPN for over 25 years and are still active in their lifestyle

My suggestion is to think positive, eat a balanced anti inflammatory diet, exercise 3-4 times a week and drink plenty of water!

God bless you on this journey; we are here for you

[linard in reply to MiltonBradley]

Thankyou very much 😀

[azaelea]

Hi Linard, sorry to hear you've just been diagnosed with an MPN but as other friends have said above, try not to worry and try not to think of it as cancer as it is not the type with a tumour most people think about when they hear the word . Follow the above good advice and please know thatbwevareba friendly bunch all here to help you. Regards Fran xx

[Cambersand]

Welcome to the forum, already people have posted encouraging information and support. We are all in it together. Be aware of the side affects on the drug you are taking and keep a log of them. Let your haematologist/nurse know as they will monitor how tolerant your body will be to the new drug. Initially if your platelets go down great, if not they will gradually increase the drug until it starts taking affect. Don’t worry, be positive look out for special forum days where by consultants, nurses, people diagnosed with blood disorders gather along with friends and family to share and give advise.

😁

[linard in reply to Cambersand]

Thankyou this is all so new xx

[EleanorPV]

Remember what you are experiencing and your emotional response is normal. Acceptance of a chronic illness is difficult. I’ve found once I accepted my PV I could then understand how to adapt to my symptoms and get on with enjoying life. Remember I’m now over 3 years along this road, I didn’t have any of this knowledge when I was first diagnosed. I was consumed with fear and my symptoms were defining my life. It all takes time. Sending ehugs, if needed. Xx

[linard in reply to EleanorPV]

Oh god ! I am consumed with fear , and you said it , its defining me ! Now I know it’s not just me xx

[Pte82]

Investigate which products you come in contact that contain benzene.

drugwatch.com/benzene/

[Threelions]

For me, the initial diagnosis was a relief. Only through diagnosis can treatment and management of the illness commence with a view to enjoying our lives.

Diagnosis is also a point of clarity and focus - the point where you become aware that you have to live with an illness that , at present, cannot be cured. I’m sure most people on this forum questioned their mortality at this point.

In truth it is something that is difficult to come to terms with but equally the knowledge that it isn’t life threatening and can be treated is a huge comfort.

The people on this forum are amazing. The one place where you can read about people’s issues and in turn use the experiences from your journey to assist and help others. For me this helped with what I felt was most difficult- the fact that I could feel isolated as the condition is so rare.

As long as we stick together here and have our Sister, Maz, looking out for us I’m sure we can all move forward in a positive way.

[linard in reply to Threelions]

That’s was it a point of clarity , I had it right there ! I didn’t know what to do , at first I was pretty blasé ok I’m feeling fine look fine , but mentally I am so not ,I guess I’m a bit confused,uncertain,scared, trying to be positive some days are really good some not so much, your comments have helped a lot , today not so good xx

[Threelions]

Some days will be better than others. It becomes easier as time moves on.