Pot Belly

[WeeHarry]

Hi

Does anyone have a problem with a pot belly. I have found recently that my trousers are tight and I am sure my spleen is not the cause. I have MF on Ruxolitinib 5mg 2 per day, eprex injections once a week and zario 3 times a week.

[JediReject]

Hi WeeHarry, , know what you mean , I looked like a Buddha when I had MF and was in danger of popping my shirt buttons and putting some poor beggars eye out. It's not a great look and I was very concious of it sitting with my arms folded across or actually resting upon my offending tum. I started wearing baggy tops, , vanity is a terrible thing 😃.

I put mine down to my large spleen pushing everything out. My spleen wasn't just elongated but also voluminous. It's still elongated but is much 'flatter' following my SCT. And my tum is too.

I can't see another reason for your pot apart from the obvious food intake which could be a factor because Ruxolitinib is known to cause weight gain, it did with me and exacerbated my belly.

Cheers - Chris

[WeeHarry in reply to JediReject]

Thanks for telling me I was not alone in having the belly problem. I do try to eat less but probably do not exercise enough.

[hunter5582 in reply to WeeHarry]

Big yes to the exercise and eat healthy thing. I dropped 50 pounds by doing so. The Buddha Belly is much smaller. 15 pounds to go to get to where I want to be.

[Karyn001 in reply to WeeHarry]

Try cutting out the sugar and lowering other carbs. They cause your body to produce too much insulin and that can cause the pot-belly.

[Melanie66]

Hello..I can only speak for me but my whole life my belly has swollen up and then goes down ..I believe I have had ET always (missed by Dr’s )but when I was younger I was often asked if I was pregnant,when I wasn’t ...even now I am only 8.stone 7 but still my belly seems to swell up for a few days .. then goes down again ..I only take hydroxycarbomide &clopidogrel...but the pot belly was there years before I was diagnosed..I think it is a symptom/part of Mpn ....just another irritant to live with ..🤪...Love to you all ..,Lainie xx

[Ebot in reply to Melanie66]

Have you been checked for food intolerances? Or do you have any other IBS type symptoms?

[jointpain in reply to Melanie66]

Hi Melanie. This phenomenon of swollen bellies has been happening to my wife who has MF it normally happens after a blood transfusion, though has happened at other times, it is Ascites, and in my wife's case caused by problems with her portal veinous system. Which inturn, along with high blood pressure in that area allows fluid to "sweat" out of the veins which then sits in the abdomen until it is mopped up by the lymphatic system. During these ascites times her weight goes up from 8stone8lbs to over 9stones so a few pints is involved! The consultant is not bothered, but then he isn't living with it is he? It is also not at all comfortable for my wife who being slim normally does not have baggy clothes and does not want to have them.Wishing you all the best.

[Melanie66 in reply to jointpain]

Well Thankyou for this information...I am going to research this ... I have never heard of Ascites ..,I always get asked do I have IBS .?hence swollen belly ..,It’s complicated but again I believe whatever else I do have the main problem &symptoms are all Mpn at the root of all my symptoms..I suppose with blood cancer it is going to put our bodies out of sync and give us many many symptoms...anyway Thankyou it’s just great to have a name for swollen belly symptom ...keep well & safe ... Lainie x

[clubdino]

I would contact your doctor. Weight gain can be a side effect of eprex. But from the article that I'm linking below it says if you notice sudden unusual weight gain to contact your doctor. Also, Zarxio can cause splenomegaly to the point of splenic rupture... even if your spleen was fine at your last checkup it may be enlarged now ...definitely call your doctor. Also Zarxio can cause Capillary leak syndrome....(from link below) ZARXIO can cause fluid to leak from blood vessels into your body’s tissues. This condition is called “Capillary Leak Syndrome” (CLS). CLS can quickly cause you to have symptoms that may become life-threatening. Get emergency medical help right away if you develop any of the following symptoms:

swelling or puffiness and are urinating less often.

trouble breathing.

swelling of your stomach-area (abdomen) and feeling of fullness.

dizziness or feeling faint.

a general feeling of tiredness.

webmd.com/drugs/2/drug-1023...

[WeeHarry in reply to clubdino]

Hi A;;Thanks for all information I will definitely have a lot to discuss at next consultant meeting.

[MarybellM in reply to WeeHarry]

My husband has PV and his belly is definitely out of proportion to the rest of his body. He’s tall and slim all over, apart from his tummy. I persuaded him to ask the GP about it once but GP didn’t seem concerned. Like you, I thought about enlarged spleen but no-one has ever tested that or mentioned it. I’m afraid that my husband eats very unhealthily and does very little exercise (he is very tired most of the time). I’ve tried to be supportive and encouraging (bit of a nag at times...) to no avail. So, the jury’s still out on poor hubby. Thanks for bringing up this issue - it’s very helpful to hear about MPN symptoms shared by others.