Myelofibrosis diagnosis

[Mrswhyte2019]

Hi, I'm the wife of someone who has just been diagnosed with myelofibrosis , his haematologist said its at stage 2 of 4. He will be starting Pegasys interferon on Monday at a starting dose of 45 micrograms. I've joined this forum to get as much information as possible to help us know what to expect from people who are actually going through the same thing. Will my husband still be able to live a normal life whilst on this treatment ? He's got quite depressed with this recent diagnosis and we don't know too much about it. Any advice would be very much appreciated, thanks

[BrotherDay]

Hi !

I recently started to take Pegasys (45/week), although for PV. So I didn't study and can't speak from personal experience in regards to it's effect on myelofibrosis. But in my case, I already see positive impact on WBC and platelets and side effects from interferon are pretty much non existent so far (aside from occasional mild fatigue).

In any case i would recommend to add liver and glucose to your blood tests while you're on it.

All the best !

[Mrswhyte2019 in reply to BrotherDay]

Thanks a lot, glad to hear you're seeing an Improvement and there's no side effects as such for you, fingers crossed it goes the same way for him, appreciate you replying

[BrotherDay]

Also, this might be interesting for you:

healthunlocked.com/mpnvoice...

[hunter5582]

While I have PV rather than MF, I can speak to the efficacy of Pegasys. I have been on 45mcg pf PEG since May 2021. It rapidly brought my erythrocytosis and thrombocytosis under control. I am now in complete hematologic remission. I have experienced no adverse effects on this dose of PEG. It has improved my symptoms and quality of life.

We each need to find our own way to cope with the unique way our MPN presents. We each respond differently to the meds used to treat MPNs. The good news is that treatment option for MF and the other MPNs are improving. PEG is only one of a number of options.

The MPN Voice website has very good resources for people with MPNs

mpnvoice.org.uk/

Knowledge is power. It does help to find reliable sources of information. While searching the Internet via Google can find information, what is found is often out-of-context until you have a solid base of knowledge. Here are a few other resources to start learning about MPNs

mpninfo.org/conferences/202...

mpnadvocacy.com/

powerfulpatients.org/help-b...

One of the most important things at this point is to get a MPN Specialist involved. Most hematologists lack the KSAs to provide optimal treatment for MPNs. If your husbands current hematologist is not a MPN Specialist, then getting one involved at least for consultation is very important. Here is a list

mpnforum.com/list-hem./

All the best to both of you as you enter this journey.

[Mrswhyte2019 in reply to hunter5582]

Hi thanks for your reply and the links , this is all very helpful , he has been given a specialist mpn nurse , not sure if that's the same thing or not. Anyway will take a look through all the links you have sent me and arm myself and him with as much information as possible.

Thanks again

[hunter5582 in reply to Mrswhyte2019]

If the MPN Specialist Nurse (advanced nurse practitioner) is attached to one of the MPN centers in the NHS then that could work. I would ask the nurse how many MPN cases he/she has managed and under whose supervision he/she works. It might be that one of the recognized MPN Specialist doctors is already involved. If not, then it would definitely be time to seek input from a MPN Specialist physician. The mid-tier providers can provide excellent care, but when dealing with MF or any other MPN you always want the highest level of care available.

All the best to you both.

[Mrswhyte2019 in reply to hunter5582]

Ok, im going to ask these questions when we next attend in 4 weeks. Thanks for the advice , much appreciated !

[tracey13]

Hi sorry to hear about your husband,My husband was diagnosed 9 years ago with PV about 3 years ago he wasn't feeling very well the hydroxy was absolutely draining him he was struggling with extreme fatigue.

Any how his bone marrow biopsy revealed primary MF so he's now on ruxolitanib which has been amazing . He's doing brilliant all his bloods are in normal range it reduced his spleen almost back to normal size.

We don't read about life expectancy as once your MPN is controlled you can live a normal life.

Medication has come a long way now.

My husband was absolutely trashed when he was diagnosed 9 years ago. Now he's settled in his mind. I will say he does have his down days .

He's 49 now works full time and hasn't had any time off sick .

This forum is amazing I joined when my husband was diagnosed . People on here are so supportive and most people totally understand what your family will be going through.

We still go on holiday nothing has changed for us apart from the price In holiday insurance !!

My husband hasn't had any side effects off ruxolitanib.

You read all kinds of things on Google I'd stay clear of that and come to this forum for answers or reassurance.

Take care and hopefully once your husband is sorted on medication you can put this to the back of your mind.

It took over our lives in the early days of diagnosis but like my husband says he feels lucky his MF can be managed.

Tracey

[Mrswhyte2019 in reply to tracey13]

Hi Tracy, thanks so much for your reply. My husband is also 49 and has been worrying about if he will be able to return to work and how this will affect his life so very comforting to read it hasn't affected your lives so much.

I did start off with googling when he was first told that he had blood cancer and had the bone marrow biopsy to determine which one, it was quite horrific , I kept finding posts that mentioned prognosis of 5 years which was very scary , so you answered another question in your reply that I was too scared to ask !!! This is why I thought it would be better to join somewhere I could get actual real information from people who are going through the same thing .

I'm hoping reading these reply to him calms his nerves about the medication and the side effects as that is really concerning him at the minute.

Thankyou so much

Donna

[Hopetohelp]

I am on peg with hardly any side effects at 65mcg and am very happy on it. It’s slow for me in reducing results but it can take a long time so don’t expect too much too quickly although there are some on here that have had very quick results. Good luck and we are all here to help where we can

[Mrswhyte2019 in reply to Hopetohelp]

Thankyou so much for your reply , so nice to hear so many people seem to get along with the treatment , all positive things I can show my husband to help settle his mind Thanks again

[Cja1956]

Hi there. I was diagnosed with post Et Mf intermediate 1 in 2019. It is definitely a scary diagnosis but if you find the right doctor, you can live a relatively normal life. The first few months I was on an emotional roller coaster but now I have accepted it and try to live each day to the fullest. My partner is very active so I think it’s been the hardest on him because I do get tired easily and we can’t do some things together that we used to. But just tell your husband that there are new medications and treatments coming out all the time, rest when he has to, and if you can, find an mpn specialist. Good luck to you. Keep us posted.

Cindy

[Mrswhyte2019 in reply to Cja1956]

Hi!Thanks so much for your reply , I am glad you are managing to live your life to the full as best you can, my husband suffers with tiredness and fatigue already as it's looking like he's had this condition (or one that's progresses to this) for over 10 years so we're used to being a bit limited due to this , his main worry of this now is progressing further and the treatment as he is a man that doesn't even like to take a paracetamol and will talk himself into side effects because he's worried himself about them that much beforehand , hopefully all these positive replys I've recieved here will help to put his mind at ease ,

Thanks again

Donna

[Cja1956 in reply to Mrswhyte2019]

Similarly, I was diagnosed at age 52 with ET Jak2. That was in 2008. When I changed to an MPN specialist in 2019, she told me she thinks I may have had pre-fibrotic MF even back then. I had brought her my original diagnosis and then she contacted my previous doctor. I’m sorry that he’s having such a difficult time. But like you said, this site offers loads of support in guidance. It has literally been a lifesaver for me.

[Mrswhyte2019 in reply to Cja1956]

Yes I am feeling so much better after reading some of these comments , we have both been worried sick but this is going to be a massive help for me trying to keep him positive , he's not technology savvy so him joining himself would not have been possible which is why I joined on his behalf and all these comments are so positive , right now his mind is suffering more than anything else so will just keep reading these posts to him and hopefully will be able to get him feeling better soon. Thankyou

Donna

[Otterfield]

Welcome to the forum. I also have Myelofibrosis, in my case a progression from Essential Thrombocytosis. I agree that the diagnosis is very depressing and frightening. However, living with it has been much easier than I expected and I feel fit and well and able to walk 3-4 miles a day. Fatigue is an issue but if I pace myself I am fine. I am on Ruxolitinib, which is really what has done the trick in making me feel well.

Depending on your husband's age and any other health issues, a stem cell transplant may be an option at some point. I am due to have one next year.

Very best wishes to you, Jennie

[Mrswhyte2019 in reply to Otterfield]

Hi thanks for your reply , this is all very helpful. Husband is 49 and also has type 2 diabetes so doubtful a stem cell transplant would be an option for him from what I've read.

Hope all goes well with yours next year, tha ks again for your reply

Donna

[Otterfield]

His age would be to his benefit if he were to have a transplant at some point. I don't know whether Type 2 Diabetes would be a barrier though. It's early days for you both.

[Mrswhyte2019 in reply to Otterfield]

Stem cell transplants weren't even discussed at his last appointment , it was just hydroxy or pegasys interferon, and he chose the pegasys. I had read about stem cell transplants but thought it was only an option for younger patients. Il have to try and find out whether the diabetes would be an issue there , thanks for that

[Otterfield in reply to Mrswhyte2019]

I am 60 and am having a transplant next year. However, it's not the right thing for everyone and we have to take these things one step at a time.

[DJW1]

I was diagnosed with primary mf in May of 2018, and my best advice to you is to get a specialist in mpns. A general hematologist rarely sees mpn patients, and often is not up to date on the latest practices or trial drugs etc. The fact that you were told he was at stage 2 of 4 is questionable, as most mpn specialists talk in terms of prognosis not stages - those are for solid cancers. I realize there are a few hems that say things like that for simplistic reasons, but it is misleading. Even getting a 2nd opinion by a specialist is a good thing.

[Mrswhyte2019 in reply to DJW1]

Yes was wondering about the staging thing as in all my research I hadn't read anything about that, more about some dipss scoring although all that doesn't make sense to me yet. I'm going to ask about this mpn specialist as everyone is talking about that so sounds like a good idea. Thanks for your advice

[MichaelS]

Keep you and your husbands spirits up, please. I was diagnosed with PV when I was 37, but in 2010 a bone marrow biopsy showed it had changed to MF. I was put on Ruxolitinib practically as soon as it was certified in the UK, in 2013. It helped my symptoms remarkedly. I know a lot of people on here who are taking pegylated interfon, who have had hardly any side effects. Rux' is controlling my bloods well so I shall stay on that medication. BTW, I'm 75 now and still active and enjoying life, so I'm sure your husband can do the same.

Best wishes, and everybody please have as good a Christmas as you possibly can, in these Covid times.

[Mrswhyte2019 in reply to MichaelS]

Hi Michael, Thanks for your reply. I am trying my best to keep his spirits up but its not easy !! I've been reading these posts to him and I'm hoping all the positive words are helping him. He's suffered for years with bone pain , night sweats , itching and fatigue so hopefully treatment can improve his quality of life now that we know what the issue is. Nice to hear your bloods are controlled well and you're managing to live an active life, that's all very promising and positive information I can pass on to him.

Thanks again for replying and have a lovely Christmas yourself

Donna

[tracey13 in reply to Mrswhyte2019]

Hi Donna,

Has your husband got any symptoms.

When my husband was diagnosed with PV he had really fuzzy head extremely tired .

He had a pint of blood removed every week until he got his haemocratic level down . He was on a baby aspirin .

He went on hydroxy that seems to be ok for two years but this made him iron difficient and he felt wiped out all day he struggled for two years .

Then when he was put on ruxolitanib it was a life changer for him.

Message me any time if you need a chat.

Tracey

[MichaelS in reply to Mrswhyte2019]

I'm sure he will start feeling better once the medicos have sorted out the right dose for him. It may take a while to get the bloods in control, but they are on the case now and there will be lots of tests ahead. The symptoms are all well known by the people on here and should ease; hopefully quickly for you both.

[Mrswhyte2019 in reply to MichaelS]

I'm feeling positive after everything I've read that he's going to be ok and will cope ok on his treatment , thanks for all the advice. Really glad I joined this site.

[Mazcd Partner MPNVoice]

Hello Donna and welcome to our forum, I can see that the lovely people in our community have given you advice and support, so I will just add that we are here for you and your husband. Best wishes, Maz

[Mrswhyte2019 in reply to Mazcd]

Thankyou so much , so glad I joined this forum, definitely the best thing I could have done. Everyone has been so helpful and I formative and have massively out my mind at ease , and I have lots of lovely positive posts that I've read to him. Thanks so much

[BlushNoisette]

Hi,

Just thought I'd mention mpnvoice.org.uk in case you haven't come across that website yet. There is a lot of useful info there ...... well worth checking out if you've not done so already.

Take care, Lyn

[Mrswhyte2019 in reply to BlushNoisette]

Thankyou, someone else mentioned this site also , I've had a quick browse but haven't had chance to sit down and trawl through it all properly yet. Definitely will be doing that as soon as I can though. Thankyou

Donna