MPN and Myeloma

[Suke]

Hi all. Just wondering if anyone else has an MPN (Myelofibrosis) and Myeloma. I have been diagnosed with both in the last few months after having MGUS for many years. I haven't started any treatment yet but recently have been suffering with a very enlarged spleen of 22cms which I hope they will be able to do something about as I have now lost over a stone due to not being to eat fully.

[Merry6]

Hi Suke

I have ET JAK2+ and MGUS. They were both diagnosed at the same time about two years ago now. I'm being treated with HU and Apixaban for the ET but nothing for the MGUS as that is early stage (or was last time I had the blood test for it). I'd like to know what symptoms you had and how the progression to Myeloma was diagnosed? Hope you get the treatment you need for your spleen soon. Hugs, Merry x

[Suke in reply to Merry6]

Hi Kerry

Thanks so much for reply and hugs. Sorry to hear you have ET and I hope the treatment helps. I was found to have very high white blood cells in 2004 when having investigations for a lung condition. Mainly over the years I've had lots of chest infections to do with the COPD and Bronchiectasis and then in October last year I was diagnosed with an Antibody Deficiency and everything has moved on from there this year. As you see with several things happening along side others it's hard to say about symptoms other than chronic fatigue and generally feeling unwell. I have immunoglobulin therapy every week which I administer myself and this has made a great difference to the number of chest infections I have now. I had a BMB that confirmed the diagnosis. From what I can gather from looking on here we all have a different journey with our illness. Love Suke.

[eire]

Hi Suke, I have a spleen size of 23cm which didn't shrink on Ruxolitnib. The best way to handle your weight loss is to eat little and often. I also lost a lot of weight at one time, I was only eating once or twice a day. The hospital wanted me to see a dietician to encourage me to eat more!!! That I didn't want so changed my eating habits and am now back to 'normal' weight. It's not easy when you feel full but after a while you get used to grazing as I call it. I only have MF but feel soooooo bloated sometimes. I wish you the best - give it a try as hard as it is and see how you get on.

Pat

[Suke in reply to eire]

Hi Pat.

Thanks for your reply and your good wishes. It's disappointing that Ruxolitnib didn't help you but I was told that treatment only works in about 50% of patients so I'm sort of prepared for that. You seem to have got the hang of when and what to eat. I'm still working on that and find the grazing bit quite difficult as it seems I'm always having to think about food when my appetite isn't great. Are you in much pain from your spleen. I am uncomfortable a lot of the time and find it difficult to sleep trying to find a comfortable position. Take care.

Love Suke

[eire in reply to Suke]

It is difficult Suke but after a while it becomes part of what you have to do!!! I don't eat huge amounts or fussy meals I wouldn't have the patience!!! I've found I eat better at lunchtime for some reasons would eat a fairly substantial amount then. Breakfast only toast then maybe crackers with tomato or beetroot then midday feast!!!! Afternoon snack possibly fruit or salad sandwich also love beans on toast and fish finger sandwiches!!!! It's no longer my main focus as my weight is back to normal - you'll get there too even though you'll feel like an overstuffed pillow for a while!!!! I'm luckily not in any pain and have no trouble sleeping at all. My right side can b more uncomfortable if I was to pick a position. I'm very advanced with my MF so am fighting back as hard as I can. Have taken up upcycling just completed my first project - delighted with the results. Then decorated my living room and just finished my dining room all on my own - what a feeling I look and feel like the cat who got the cream. It's v v hard sometimes with a huge spleen and sometimes the old depression tries to sneak in so there are always battles for us to fight. Try not to let the eating overwhelm you keep it simple and you'll get their you're not on your own.

Pat

[Suke in reply to eire]

Hi Pat. Thanks for your lovely message. I shall endeavour to follow your example. I can see it makes sense. We have started having our main meal at lunchtime whenever possible. You have mentioned some of my favourites too. I also love beans on toast and fish finger sandwiches. Well done for your hard work on upcycling and decorating. I wish you well.

Suke xx

[Suke]

Hi scarlett777.

It's a long time ago but as I remember I was having lots of tests due to lung problems. The blood test showed I had a high white blood cell count most of which were monoclonal. I then had a BMB which confirmed the MGUS which I was told may at some point development into Myeloma or Myelofibrosis. In the last year both illnesses are progressing.

I have recently started on Hydroxycarbamide 1.5 grams daily. I've got a check up tomorrow.

Regards Suke