Lyn30

[champ30]

Hello,

I have just joined this group.

I was diagnosed with myelofibrosis last early September,then 3 weeks later the tests showed I also have low risk MDS.

I would love to hear from anyone with myelofibrosis as this is a high risk condition for me.

It is great to be in touch.

[Mazcd Partner MPNVoice]

Hello and welcome to our forum, you will get lots of support and advice from the lovely people on here, I would also urge you to read as much as you can on our website about MF, there are also some great videos of patients and haematologists talking which may help you.

mpnvoice.org.uk

best wishes, Maz

[champ30 in reply to Mazcd]

Thanks Maz, Sorry if I haven't replied sooner.Yes I'm getting lots of feedback, some really positive some an eye opener.

Good to be amongst people with same and similar conditions.

Kind regards Lyn.

[Rachelthepotter]

Hi Lynn. Welcome to the group. I too have MF, and was diagnosed 12 months ago. I discovered this forum soon after and I’ve found it helpful and supportive all sorts of ways. Keep coming back, and if you ask questions you’ll likely find someone who can help. MPNs are very variable: the physical and emotional effects can be different for different people even with the same diagnosis.

All my best wishes.

[socrates_8]

Hey Lyn...

HNY & very best wishes. There are quite a few of us MFers here.

I was diagnosed 18mths ago w/ MF.

I started taking Ruxolitinib (Jakafi) 25mg bi-daily in December last year.

Initially, I was diagnosed w/ ET, & I therefore was started on Hydroxyurea (HU), before Interferon Alpha. However, I was having problems w/ both of those treatment regimes, and due to my Bone Marrow Biopsy (BMB) being a Grade 2, my diagnosis was then changed to MF.

It has mostly been a rocky roller-coaster ride for me. However, there are many others far worse off, & I therefore just keep reminding myself of that fact & I try to stay as fit & as healthy as I may.

As Rachel mentioned below, we are all just a td different from one another and we can therefore react differently to these MPN conditions.

How are you coping w/ your symptoms thus far Lyn?

Do stay in touch, & as Maz indicated above, there are plenty of caring helpful people here willing to share their experiences w/ you...

Keep smilinmg

Steve

(Sydney)

[champ30 in reply to socrates_8]

Thanks Steve,I am pretty up and down, mostly due to another condition I have, Bronchiectasis.When I get chest infection, which is often I cough blood.On antibiotics a lot so have blood tests each week then,to see if antibiotics affect bloods and Ruxolitinib.

At present have had 2 great days.Hope this continues!!

Kind regards Lyn

[socrates_8 in reply to champ30]

Hey Lyn...

Well that chest infection sounds like no fun at all...

When I first started HU I used to have blood in the back of my throat & bleeding gums all too often for my liking, & I recall feeling quite apprehensive at the time. I also used to suffer from V high blood pressure (BP) too, however, as my level of fitness generally improved, I was eventually able to forgo the need for BP tablets as it returned to normal levels. Initially at least, it seemed that the Jakafi returned to me some of my energy... (?)

The blood in my throat I believe might have been caused via Portal Vein Thrombosis which also seemed to improve significantly along w/ my general fitness level. However, it does still return periodically... My anemia on the other hand has grown significantly worse on Jakafi, & I often find myself breathless even w/ the tiniest of fitness efforts.

However, I try to continue all the same. I have taken up cycling which I find much easier than walking/running etc... And along w/ my low-carb dietary regime, I have lost circa 20kg over the last 12 or so months. All contributing to making me feel better within myself generally.

Nevertheless, there are always some days, when getting out of bed is nigh impossible, & my level of fatigue extremely depressing...

As others have mentioned, we are all a tad different & what works for one might not for others. Hence, we all need to experiment w/ ourselves a little to find what works best for each of us...

Best wishes for a happy 2018

Steve

[champ30 in reply to socrates_8]

Hi Steve,

Wow that's great you've lost all that weight.Good you're taking up cycling too.

Yes I loved walking but now find I'm breathless on the slightest incline,and am realizing being in very cold air(winter) is not good for my chest(other condition).However am waiting to hear from a gym,there is a cancer trainer there,to get enrolled on a regime which will accommodate my capabilities.Hoping to start soon.

Once again thanks for support.

Regards Lyn

[MFBMT2011]

Good morning Lyn. I am one of the MFers who had a stem cell transplant, seven years ago now. Happy to answer questions on that aspect should it be in your future.

Chris Harper

[champ30 in reply to MFBMT2011]

Thanks Chris, good to know you're doing ok with the transplant.

I guess it's early days for me, but one can't help thinking the worst sometimes.See my doctor in 2 weeks and hopefully my red cells have stayed up and don't need transfusions.

Regards Lyn

[crapaud]

Hello Lyn,

I am (was) also a 'MDS/MF' - had a SCT just over 2yrs ago.

Although there are similarities, we are all different in our reactions and needs.

You will find plenty of support on this forum in the moments ahead.

Best wishes

Crapaud

[champ30 in reply to crapaud]

Hi,Thanks for support.Yes I guess we're all different and will react differently to drugs etc.It's the unknown and accepting!

Regards Lyn.

[KristiJo]

Hi Lyn, i was quietly moving along with my MF diagnosis they gave me 4/1/17. I decided to head up to the Mayo Clinic 1st of Dec. my blood counts starting changing so they decided to do another Bone Marrow Biopsy and they changed my diagnosis to MDS/MF overlap syndrome. They checked more of my genes and I have a couple of bad ones. I'm heading for a Bone Marrow Transplant beginning of March.

Best Wishes to you

Kristi

[Rachelthepotter in reply to KristiJo]

Hi Kristi. Hope all goes well with the stem cell transplant. Keep in touch: would love ti hear how you do, as that may be something I need in the future. .

[champ30]

Hi Kristi, thanks for your story.Is it an anxious time for you or one of relief,? Good to be in touch with those who have both conditions.

Kind Regards Lyn.

[KristiJo in reply to champ30]

I'm anxious for sure. There's a lot on my plate right now. Many things to take care of before the big day. My Biggest problem is the move from home for 4 months. I have to live close to the hospital. I'm in the process of trying to find a place now.

[champ30 in reply to KristiJo]

Yes, sounds like you have much to organize.

Best of luck with the organization and most of all the SCT,will be thinking of you.

Best Wishes Lyn