JAK2 Test
Posted , 8 users are following.
Hello All,
Been a few weeks since I last posted. . . . . I finally received the results back from the JAK2 Test I had done on Nov 18th. . . . My Oncologist only ran 1 test the V617F he said he didn't use the exxon12 . . . . The results came back negative, I asked him what that ment. He said we where going to continue treatment as normal that just because it came back negative we could not rule out polycythemia because of my high hematocrit and Hemoglobin. I know there's one sure way of finding out is to have the Bone marrow biopsy but I've heard an read this is extremely painful. . . . . Has any here on the forum had it done an what was your experience with it. . . . . . . . Hope this post finds you all well. . . . . . .Take Care. . . . Randal
1 like, 8 replies
clem19079 randal_373
Posted
For bone marrow bbiopsy you are heavily sedated ( or at least you should expect to be so). You kinda know somethin happenened but you don't know what. I have a needle phobia but still went through it. At least it will give you sn answer.
john17871 randal_373
Posted
My test also came back negative. I don't know that he ruled PV out, but he doesn't seem to think that it's very likely after the blood test for JAK2. Seems he's chasing secondary possibilities now, such as smoking, sleep apnea, etc. My HCT seems to be holding pretty good since my last letting a few weeks ago. On one hand, I'm glad it probably isn't PV, but on the other, I'd really like to know what's causing it if it isn't...after all, a secondary cause could always be worst. Before treatments, my hematocrit (59%) and hemoglobin (21) were also high.
peter98873 randal_373
Posted
I have had a bone marrow biopsy a number of times and on each occasion I have received pain-killing injections immediately before the biopsy was conducted. I didn't suffer unduly and if the biopsy is carried out properly you should not suffer pain. If you are concerned then tell the doctor carrying out the procedure before he/she starts and you should have no problems. Fear not, it doesn't take very long and is important for you to have it done.
Chippenham randal_373
Posted
I had a bone marrow biopsy done about two years ago. It was an out-patient procedure, local anesthetic only. I drove two hours home by myself immediately afterwards. The procedure was no more painful than a bee sting, I can't really describe the feeling, it was very uncomfortable, but not particularly painful.
Regarding the negative JAK2 Test - did your oncologist think it may be a case of secondary polycythemia? If so, a lifestyle change to cut out smoking or exposure to second-hand smoke, and testing for sleep apnea may be in order.
Good Luck!
randal_373 Chippenham
Posted
Hello Chippenham
I didn't really have much time to discuss if he thought it to be secondary PV as it was a phone conversation. I quit smoking 4 1/2yrs ago and I'm not around anyone who does smoke now. . . . . As far as sleeping I've slept poorly for years. I usually function on 3 or 4 hours sleep a night I have for years. . . I'm a very light sleeper and am usually awake 3 to 4 times a night. This is something I need to check into as I've seen alot of you talk about sleep apnea on the forum here. I never knew it could be leading to my problems I have with high hematocrit an Hemoglobin
Chippenham randal_373
Posted
Randal - My GP initially told me the cause of my Polycythemia was probably sleep apnea, but he couldn't be sure. In the meantime he also sent me to a hematologist who performed a JAK2 test and it came up positive.
So if JAK2 remains negative, you should definitely ask your doctor about sleep apnea.
kevin81762 randal_373
Posted
Hi Randal... If you're jak2 v617f negative, then you can be about 95-97% sure you don't have PV... Did the dr check your EPO level?
marie-jos6518 randal_373
Posted
About the bone marrow biopsy, I had it done a month ago. I would compare it to a dentist appointment, you know they're doing something, it's uncomfortable but not painful. For me, the shot to num the skin was the only thing I felt.
Good luck in finding what's causing your high blood counts. I was "lucky " enough to have all the checks for PV (jak2, bone marrow) , so at least I don't have to investigate further.
Marie