Has anyone out there had an enlarged spleen removed,(24 cm).I would like to know of any problems they encountered, and recovery time afterwards, also has anyone firsthand experience of Myelofibrosis, I would appreciate any info’, some of the stuff you read is a bit scary.
les.
hi les,
yes i had my sleen removed but that was before Glivec was available and it was extremely enlarged at 24cms. i was also told that i had myelofibrosis but that this condition was secondary to (caused by) cml. after a successful transplant at HH in ocotber 2003 i am now clear of both. but i do not have a spleen, however this has not had any effect on my life.
why do you have to have yours removed? i assume you are taking Glivec or Sprycel? your spleen would return to normal during the course of this sort of therapy.
sandy C ;o)
Hi Sandy,
I have been on Glivec since 2000, but came off in March,as blood levels keep dropping and spleen still growing,up from 18cm 30/3/07 to24cm on 9/8/07 and getting very painfull.When I was dx it was even larger and had iradiation to shrink it. I did ask about this course of action again, but it was ruled out because of scarring, Interferon was another possibility, but that made me so bad (twice) I just could'nt go there again, I was only on a low dose so there is little room for any adjustment unfortunatly.The downside of having spleen out is have I got enough marrow to suport me? Although they want spleen out ASAP, they will not proceed till they are sure I have enough marrow. MRI scan shows a small resevoir. Has it been Glivec or the Myelofibrosis that has caused the problem? perhaps a biopsy of the spleen will answer some of the questions. Any way I won't have anything done before I go on holiday at the end of Oct. Good thing though is that PCR is undetectable. Kind regards,
les
