New Myeloproliferative Disorder diagnosis

Recent diagnosis
1

I was diagnosed with Myeloproliferative Disorder (Jak2 mutation of 15%) two weeks ago. I am currently trying to navigate this diagnosis and what it means for me moving forward. I have always been fit and healthy and this has come as a massive blow.

I have had my first venesection and have a bone marrow biopsy soon. The fatigue is horrendous. As I don’t have a plan yet from the consultant (he’s waiting for more results to diagnose Polycythaemia Vera) it’s all very unknown and I don’t know what things are going to look like for me moving forwards. I understand that the prognosis is good with treatment but it’s all still very daunting. Am I likely to be able to get back to a more normal way of life or will I constantly be needing naps forever?!

I also wondered if anyone knows if/what sort of support you can apply for. I have looked at PIP payments and will have to contact them. I currently teach full time, which is not sustainable at the moment with how I feel and would like to see if something like the PIP will support with this.

I also have critical illness cover but from what I have read, for ‘lesser risk’ cancers they won’t pay out or will only pay a small amount of the total cover. Has anyone else had an experience with this? I need to ring them but with my working hours I haven’t been able to yet.

Any advice / thoughts would be great!

3 Likes
2

Hi @yolbob16 and welcome to the forum.

I’m sorry to read about your situation and the waiting for diagnosis is very challenging.

In terms of PIP you will most likely need a formal diagnosis to move forward although that’s just my thoughts.

When I was awarded Adult Disability Payment the Scottish equivalent of PIP my Consultant wrote a letter to go with the application. A Macmillan Benefits Advisor completed the application.

They know their way through the process and it’s definitely getting connected with one at the hospital you’re at if they have one.

The Cancer Support Worker in Haematology Team at the hospital facilitated this. Clinical Nurse Specialist may also be able to help

In terms of Critical Illness, you probably need to carefully look at the specific terms of your policy.

I didn’t have Critical Illness Cover but my sister who had a terminal cancer diagnosis with a different cancer did and was able to make a claim.

I hope that helps. It’s incredibly difficult at these early stages.

I’ve included a link below to a specific Blood Cancer UK page that covers financial support and benefits

What I can say that here on the forum everyone is really supportive and understands first hand the challenges of living with blood cancer.

Take care

4 Likes
3

Hello there @yolbob16, welcome to the forum at this difficult time. I’m so sorry to read of the diagnoses you’re dealing with and can really empathise.

Sounds like we may have similar diagnoses with JAK2 gene mutations and likely Polycythaemia vera ('PV') and I know the fatigue you describe very well, my nemesis! My fatigue was brought on by my treatment as I was lucky not to have symptoms previously, but it was disabling and took about 3 months to fade to tolerable levels.

Lots of research and tips around the forum suggest that slow exercise like yoga, tai chi, Pilates and the like can really benefit our energy when fatigued. I found gentle flat strolls and yoga in front of the TV really did boost my energy.

Here’s the Blood Cancer UK information about fatigue: Fatigue | Blood Cancer UK and from Macmillan: Tiredness (fatigue) and cancer | Macmillan Cancer Support

I would typically share the great Blood Cancer UK information about Polycythaemia vera ('PV') for you, but as you’re awaiting an overall diagnosis I’ll just say try to avoid Dr Google for now. Even with an accurate diagnosis, googling tends to show very generalised and out-of-date results.

I can say though, from my lived experience of being diagnosed with a JAK2 gene mutation and then Polycythaemia vera ('PV') back in 2023, is that my haematologist tells me I’ll likely live into normal old age and that it won’t be Polycythaemia vera ('PV') that causes me to pass away.

Treatments for Myeloproliferative neoplasms ('MPN') have many decades of research behind them and so I chose to trust the efficacy of my daily hydroxyurea and aspirin prescription. It took a couple of years, and a diagnosis of a totally unrelated chronic health condition, but all my blood cell numbers have stabilised into their normal ranges (for people without blood cancer). I understand that if hydroxyurea stops working for me then there are many other options.

I see dear @DuncanB has offered his wisdom on PIP and cannot better his suggestion to read that Blood Cancer UK information about helping with costs. You’ll find other links through that page. Do keep in mind that cancer is considered a disability and so we have many additional rights in the workplace when living with Myeloproliferative neoplasms ('MPN').

Would calling the lovely Blood Cancer UK nurses help? They can advise on medical aspects that we forum members cannot, plus point you to other resources like the PIP info. Their free number is 0808 2080 888.

Do keep us posted @yolbob16 about how you get on, and if you’d like to read more about Polycythaemia vera ('PV') and its treatments, should that end up your diagnosis, then you can use the handy search box at the top.

Oh and I’d say try to enjoy those naps for now, it’s great to restore some energy with a good siesta I reckon!

3 Likes
4

Thank you both so much for taking the time to reply. I feel a lot more positive after reading your replies and I will definitely look into what you have suggested.

2 Likes