Low Platelets

[cheridiane]

My husband who has myelofibrosis, has just had his bi monthly check-up and his platelets have dropped to 97, hence the extreme fatigue I would think. He also had an x-ray on his spleen which has increased in size. It was reducing in size slowly prior to this. They also found what they think are a couple of cysts on the spleen. He now has to have an MRI to see what is going on. He has been taking 20mg of Ruxolitinib daily, but that is now going to be halved to try and bring the platelets back up. Does anyone else have experience of spleen cysts?

Looking forward to some replies.

[Twinkly]

I really encourage you to read the books I read to help me manage my symptoms ,,

If you follow the advice within the covers I'm sure your husband will improve ,

I'm also taking ruxolitinib every day ,but I also help myself by taking into my body the super foods needed to fight and starve the cancer cells ,there stopping them from forming and growing stronger ,I had my spleen and liver ultra sounded ,the doctor was delighted with my results..and my blood tests have been stable for more than a year ..these books have changed my whole outlook on food and drink. I urge you to just give it a try ,, The PH miracle. Diet , by Dr Robert Young. X theChina Study. By T.Colin.Campbell.

Both from Amazon books .both have Internet coverage ,,I was told by friends in recovery to try these changes ,,my husband and I are both very active healthy older people ..

Look at the photos I have put up on this site if you have doubts ,,,,good luck ,twinkly X

[Kisses]

Hi cheridiane my husband also has mylofibrosis. His dose of 30 mg of ruxolitinib reduced his spleen from 19 cm to 5above the line also made his platelets drop from 117 to 80. He's now been on 20 mg of ruxo for the last month his spleen has still shrunk more and his platelets are on the up to 115. I'm afraid to say its swings and roundabouts with the meds my husband has primary mylofibrosis. Now for 20months. He is 65 how old is your hubby and how long has he had the desease No mention of cysts thou I hope your hubby gets on ok Xox eve wife of kisses

[JediReject]

Hi Cheridiane, I been 3mths on Rux and though Im not aware of any cysts my platlets dropped to 79 after a month so dose reduced from 20 to 15mg and they went to 140. Its a like when I was on the Hydrox, adjusting the dose as I went along over nearly 8 yrs but I'm hoping to stabilise at a dose on the ruxo. No sign of my spleen reducing as yet as it is still past my naval which is a tad disappointing. And I have developed a number of bruises and I dont usually bruise easily so it will be interesting to see if my count is down again next week. My appetite is on top form though and my wife has a new saying for me as I root in the cupboard 'Chunky wants a biscuit' which I find amusing as I was down to 8half stone and Im getting back to a better weight 9plus stone.

Please keep us posted and pass on my best wishes to your hubby. Cheers JR

[Kisses in reply to JediReject]

Hi jedireject was interested in your comment did you have mylofibrosis whilst on hydroxyl or was it PV then myusband also dropped in weight in the beginning was 10stone but now is up around 12 stone and has a chocolate binge most nights but the ruxo does increase your appetite so you will soon put some weight back on best wishes frank (kisses). From eve franks wife xx

[JediReject in reply to Kisses]

I was diagnosed Primary MF in 2006. Then treated with Hydrox until this July when got the Ruxo. . x