Newly diagnosed

[Skye333]

Hi I am new. I am a 65 year old female and I have recently been diagnosed with Primary Myelofibrosis JAK 2

I am not having any treatment but since my diagnosis and reading and watching videos online I realise I have had lots of niggling side affects for some time. I told my consultant that I felt well as all the niggles had become the norm for me.

I don't see him until February so I will start a list of everything and bombard him.

If I want to get a second opinion does anyone know how to go about it and where is the best place to go?

Kind regards

Skye333

[Mazcd Partner MPNVoice]

Hello Skye, welcome to our forum. It might be best if you discuss these side effects with your consultant when you next see him as he doesn't know that you are having these side effects, he might be able to help with some medication. If after that you feel you want a second opinion you can ask your GP to refer you, with regards to where to go, it depends on where you live and how far you are willing to travel. Best wishes, Maz

[Skye333 in reply to Mazcd]

Thanks Mazcd, I didn't think I got enough information when I was diagnosed and when I go back with my questions and symptoms if he doesn't have enough answers I will seek a second opinion.

I am in Halifax and I know the the best place to go is Guys and St Thomas and that's ok maybe once or twice a year but not regularly.

There are a couple of professors based at Leeds hospital and maybe I would ask to go there.

Thank you Sky333

[JediReject]

Hello Skye333, welcome to our Forum , , although it's a select club no one chooses to be an eligible member 😕. . I'm sorry to read of your diagnosis . I can tell you that it's not always easy to diagnose PMF, but if you've had a Marrow Biopsy the chances are it will be. It is possible to go many years without any treatment or you may need low dose Hydrxycarbomide or Ruxolitinib eventually. The only cure currently is a Bone Marrow Transplant but that is a last resort for really serious cases. In most cases it is a slow burner. Put your questions together and if I were you I would give your Haematologist a chance to impress you and if you're still unhappy ask about a second opinion. There are few experts in MPNS and esp PMF. You don't say where you are based or why you would like a second opinion but you are entitled though you might need to travel a good distance.

Good Luck with your list, it might help to track your symptoms.

Cheers Chris

[Skye333 in reply to JediReject]

Hi Chris thank you for your reply. I was diagnosed with a bone marrow biopsy and I think it shocked my haematologist as much as me when the diagnosis came back. As I said in my previous reply to Maz he didn't really inspire me with confidence when he told me so if I feel the same way next appointment I will seek a second opinion.

Cheers

Janet

[Paul42]

Hi

Misdiagnosis can happen, i was originally diagnosed with MF but later changed to PV.

If you are Jak2+ then its a good bet you have an MPN of some description and if you had a BMB and they said its MF its probably right...but its good to be asking questions.

I'd be asking what the level of scarring (the fibrosis) was in your bone marrow, do your blood counts suggest MF, often MF is indicated by low platelet counts and anaemia.

I was anaemic but they only twigged it might be PV because my iron levels were also low which was causing my anaemia.

Once i went on iron my blood counts rocketed hence the PV diagnosis.

I also had scarring in my bone marrow, but they determined it wasnt sufficent in the end to be MF.

What was the reason you were tested in the first place? Often the symptoms across all MPN's are similair, fatigue, itching etc and what are your blood counts like?

Paul

[Skye333 in reply to Paul42]

Hi Paul my bloods are all acceptable levels, iron levels a little low, immune a little low. My original symptom was and is an enlarged spleen.

My husband reminded me after my diagnosis that I had complained of being tired, I itch terribly after a shower/bath, my toes have been numb/painful for a couple of years and doctors have ignored it. I have recently started with a lot of back pain but it's not muscular it feels like I'm being cut in half.

My haematologist said I had scar tissue but I don't know how much. My case was discussed in Leeds.

I hope that all makes sense Paul.

Janet

[jane13 in reply to Skye333]

sounds as though a multidisciplinary team (MDT) in the local cancer network (Leeds) discussed your case, which is good and correct practice: might be worth confirming this, I would find this very reassuring. But if they knew about your other symptoms it's possible they might have moved towards offering you a drug. Your other blood results however sound very reassuring and you don't mention any symptoms from your spleen???. You were possibly assessed as low risk and not needing a drug (yet)????

Lots of hospitals especially the smaller ones have a haematologist who is primarily a laboratory man and certainly not a mpn expert. Generally I feel that they can b fine dealing with MF so long as they stay linked into the specialist cancer hub to check they are doing the right thing by you. I have MF and moved my care from the local hospital to the regional centre - I get a much better informed clinician but the travel is becoming an increasing problem as I need to go more often.

the ideal solution might be to keep your care at the local hospital with a visit to leeds to hear the expert view and options - maybe tell your local haem that this is your aim: keep him on board ????

ps I am on ruxolutinib, which i would recommend, will shrink your spleen too, but i am in higher risk group

[Skye333 in reply to jane13]

Hi Jane thank you so much, you have answered a lot of questions for me.

My spleen is not causing too much trouble though I did mention to him that it felt uncomfortable and that I get a lot of gastric reflux.

I feel that because he will need to refer to another team that I will not get the answer to questions I ask at the clinic so you are probably right that I should ask to see them as well.

I will also ask him about my risk group. I am due to have a scan before my next app in Feb.

I'm so glad I have come on here to speak to other people with the same condition.

Should I ask if he has other MF patients?

I have got a lovely buddy who is very helpful but other inputs are great to have too.

Janet

[jane13 in reply to Skye333]

My personal feeling would be that if my local heam is a guy I can get along with and he recognises he isn't an expert then he will be able to answer questions because he will research my case and chat to the regional MDT. Then, for me, it would be worth staying local albeit maybe I got to talk to the regional mpn expert via the second opinion system. I moved to the regional centre - a 3.5hr round trip - because the local guy didn't have the attributes I list above!!!! You probably know that a very enlarged spleen can cause problems in itself so worth asking about this and ruxo in that context? Also the risk group u r in should make a big difference to being on a drug or not. If your local guy impresses you with having done his homework about these issues then fine, if not I would ask my GP to get a second opinion and maybe transfer care asap.

let us know!