New Questions, Merry Christmas to all
Posted , 5 users are following.
So,i saw my hemo/oncologist today to go over blood work...I'm In the US so levels are different. The first time I saw her my hemo was at 14.3 and she had me go do a bloodletting, today my levels where at 14.3 again and she said I was fine, I asked her about my JAK2 and it was negative so she placed me at secondary pv, I asked her why, she said it may be caused by something else, I then went on to tell her about being hot, itching all,he time and always tired, she brushed it off like I didn't say a word, I asked when she wanted to see me again and she said two months. So,i,have deceived to get a second opinion and the first of the new year I'm going to go to see MD Anderson and see what they say about all my blood work....my white,is still high, and a few other things....what else besides the JAK2 can they test.....is it JAK2 EXXON or is it Exxon12.....Please help....
0 likes, 11 replies
richard96620 leticia92303
Posted
I am residing in Houston, Texas,( near memorial I10 ) my oncologist is Dr Hsu, He did my complete blood count and charge me about $200. So far he seems to be good with my diagnoses and precription.
Are you taking Hydroxeria medicine ?
Different person have different experience with PV. I have JAK2V617F mutation - tested positive, but I do not have any sickness. I am taking Hydroxeria, 500 gram in the morning and 500 gram in the evening, I will be seeing Dr Hsu on Feb, will share my blood test result with the team. Richard Law
ellen68007 leticia92303
Posted
keith28441 leticia92303
Posted
Did your Haematologist divulge as to what your EPO levels were? In primary polycythaemia, most peoples’ EPO levels are low (usually under 3) however, if your JAK2V617F comes back negative and your EPO readings are normal, some Haematologists don’t bother checking the other gene mutation, which is the JAK2 exon 12. Having said this, in rare instances, some people can still have primary polycythaemia with “normal EPO readings. This is as mentioned though, quite rare but not improbable. Other tests for primary polycythaemia (in addition to the JAK2 exon 12 mutation) is to do a red cell mass test and/or a bone marrow aspiration. There can be many different causes for secondary polycythaemia, including sleep apnoea, smoking, severe dehydration and even living at high altitudes as well as some other medical conditions.
Hope this helps a little.
Kind regards
Keith
leticia92303 keith28441
Posted
My EPO Level is within range, but on the low side of normal....it is 6.8....my endocrinologist said that with that # I should be in the primary, and with my past history. I don't have COPD, or Sleep Apnea and I don't smoke.I had thyroid cancer in 2011 and was given over 400 mci of RAI-131....which they are now learning that with high doses of this can an may lead to leukemia. My hemo/ onco.....doesn't want to hear it and denies it.I'm waiting for the first part of the new year and going to get a second opinion...I'm calling MD Anderson and sending them all my blood work and history and see what they say.
kevin81762 leticia92303
Posted
Hi Leticia...
I'm not sure why your endocrinologist thinks an EPO of 6.8 is low. According to a recent study, that is a very average number for people, especially those in there early late 30's and early 40's. I can provide you with the link if you'd like... I say this because my EPO level is identical to yours, 6.8, and my Hematologist doesn't seem to concerned ...
leticia92303 kevin81762
Posted
He said it was on the lower side of normal, yes, please send me the link. My endocrinologist basically said that you can be in the normal low side to be classified as primary PV usually it is 6.6 , but seeing I'm at 6.8 he said he would put me as primary not secondary.
kevin81762 leticia92303
Posted
Wow... For starters, most patients with PV, especially those who are jak2 v617f negative, have sub normal EPO', not an EPO of 6.8, albeit, its not impossible, just very unlikely. This is according to Dr Ayalew Tefferi, an MPN and PV specialist. I find with this web page that if you post actaul links, they hold your posts, and verify the link, I guess, so what I'll do, is provide you with the article name to search in google...
"Erythropoietin in the General Population: Reference Ranges and Clinical, Biochemical and Genetic Correlates."
If you just google search this title, you can read all about it... Its a faitly recent study, in which EPO levels were checked in over 6000 random volunteers, and the levels all ranged. But according to this study, an EPO of 6.8 isn't far off from the medium, or average, for certain age groups... From what I gather, your EPO tends to gradually climb with age, although not dramatically.
Hopefully they don't with hold my post...
keith28441 leticia92303
Posted
Keith
kevin81762 leticia92303
Posted
Hi Leticia
First off... I'm not sure a Hb of 14.3 is really that high, even for a female, but I could be wrong... Your Hb count will normally always be higher in the am, and decrease as the day goes by. The reason they check your for the jak2 v617f mutation is because it accounts for virtually all patients with PV, something like 96-97% of all cases, with recent studies suggesting as high as 98%... Jak2 exon 12 mutations are more rare, albeit, they do occur. Keith is right, if your EPO is above the normal range and your jak2 v617f mutation was negative, most Dr's won't test for the jak2 exon 12, although I wished they would... With a normal EPO and a negative jak2 v617f mutation, although not impossible, PV would be unlikely—this is according to I read from one MPN specialist. I am in a somwhat of a similar situation Leticia, so hang in there, you're not alone... And everyone in this discussion group, especially those diagnosed and living with PV, are fantastic!
ellen68007 leticia92303
Posted
richard96620 leticia92303
Posted
It is good news that you have JAK2 - negative. Are you on any medication right now?
is you platelet count high? MD Anderson may be a good place to go.....Richard Law - Houston Texas