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Myelofibrosis*

Blood Cancers & Disorders | Last Active: Jul 7 12:31pm | Replies (114)

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@stevehurlburt

And complaining? Lol. Seriously, it Could be an enlarged spleen which sits above your stomach making you feel full. Have you a reduced appetite? This is very common with Myelofibosis......They need to physically check your spleen size....feel it on lower left of chest. And enjoy the skinney

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Replies to "And complaining? Lol. Seriously, it Could be an enlarged spleen which sits above your stomach making..."

The problem is skinney doesn't stop. My wife usually wears a size 8 and now finds a size 4 is too big because she essentially stopped eating due to the enlarged spleen and feeling bloated. Her oncologist recommended Jakafi to shrink the spleen and she was started on 5 mg twice a day in the middle of July. He insisted all supplements be stopped but I managed to allow magnesium, B Complex, vitamin D.and krill oil to continue and believe it or not liposomal C was canned too but again it was allowed only at a reduced amount of 1000 mg a day. Couldn't salvage liposomal curcumin or K2MK4. Milk Thistle is not allowed with Jakafi and her leg pain now became front and center so 50 mg of Tramadol every 8 hrs or as needed has been prescribed. It's slow to act requiring Tyelnol to fill in the pain gap and because milk thistle was forbidden she didn't want to take Tyelnol without it being detoxified by milk thistle. Now she has allowed me to ask the doctor,at the next appointment, if he will allow quercetin to take the place of milk thistle to detoxify the Tyelnol. Flavonoids have a good chance of being the compounds Dr. Ayalew Tefferi is talking about for treating myelofibrosis. Quercetin is one of them.