Comments on: Living With Myelofibrosis (Part 2 of a 4 part-series) https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/ News Resources Wed, 28 Sep 2011 17:02:26 +0000 hourly 1 https://wordpress.org/?v=6.7.2 By: Miriam https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/#comment-3416 Wed, 28 Sep 2011 17:02:26 +0000 https://sharing.mayoclinic.org/?p=9683#comment-3416 Where can we turn for such information about dating and how and when to bring this topic up to a potential mate? we wouldn’t just want a date to google for information… i can’t find any advice on this topic and would like to remarry. i would like to hear how others have
successfully broached the subject? i am divorced with 2 school age children. what do your doctors, therapists, whomever advise?

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By: Jessica https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/#comment-3415 Wed, 28 Sep 2011 16:53:03 +0000 https://sharing.mayoclinic.org/?p=9683#comment-3415 i divorced female. how does one date with a diagnosis of low risk
CIMF? and vaugue life prognosis of …well who knows. diagnosed 5 years ago at age 40, so doc says too few people of my age to know accurate prognosis and also each case is individual. please give any advice!

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By: Patricia Wagner https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/#comment-3414 Sun, 28 Aug 2011 18:50:44 +0000 https://sharing.mayoclinic.org/?p=9683#comment-3414 In reply to Annie.

I’m so sorry to hear how things turned out after your former husband learned of your illness. I am blessed that my husband and I remain together, although there were definite adjustments due to my illness throughout the years. I suppose that each situation is unique to the individuals, but perhaps you could break the ice on the subject with a dating partner by describing the side-effects of your MF as well as the type of care that you are in need of. If this goes well, perhaps you could give him something more in-depth to read. I wish you much joy, whether you eventually re-marry or remain single!

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By: Patricia Wagner https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/#comment-3413 Sun, 28 Aug 2011 18:43:36 +0000 https://sharing.mayoclinic.org/?p=9683#comment-3413 In reply to Annie.

I can only respond to this question from my own experience, plus the shared experiences of fellow patients: There is variance of opinion amongst hematologists regarding the frequency of BMBs. One of our most respected experts, Dr. Silver of NYC, says basically that if you don’t look you won’t see. He’s a true believer that one will see indications in the marrow that do not appear in the peripheral blood. I subscribed to this belief myself, after evaluating his results with those of other doctors who were looking only at the blood. However, since I have been under the care of Dr. Mesa we have skipped a year. He will likely order a BMB for me only if there are changes in either my symptoms or my CBC results. I’m okay with this, but would be reluctant to go indefinitely. Anyway, there is variance amongst our experts, and as your own best advocate you should research WHY they have these differences and then decide what you are most comfortable with. Once you know what you want done, why don’t you bring it up with your hematologist?

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By: Annie https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/#comment-3412 Sun, 28 Aug 2011 02:50:28 +0000 https://sharing.mayoclinic.org/?p=9683#comment-3412 Dear Patricia,
My hem/onc. tells me that bone marrow biopsies are not necessary for me after diagnosis because she gets all the information she needs from the blood tests i undergo.
Why does Dr. Mesa feel an annual BMB is of importance? what does he
learn that he cannot find in blood tests?
thank you

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By: Annie https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-2-of-a-4-part-series/#comment-3411 Sun, 28 Aug 2011 02:47:29 +0000 https://sharing.mayoclinic.org/?p=9683#comment-3411 Dear Patricia, I was diagnosed with ITP at age 37, when I was married with and had my only child, then a BMB showed i have MF. My husband and I divorced 2 years later; his inability to
deal with my illness and sudden needs were a prime contributing factor. Now I am 42. I only want to date marriage minded men. Does anyone have advice on how to expain myelofibrosis to a potential partner? Help! Thanks you most sincerely.

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