Polycythemia & Bone marrow Disorders screening

My oncologist said the same. If treatment will be exactly the same either way, no need to endure the bone marrow test and the COST of it.

lol 😂,yeah I guess he’s scratching his head,he wants to know the cause

Hi, I was Jak2 neg and had a hunch I may not have PV and kept voicing my concerns. The 3rd oncologist I saw finally agreed I may not have it and we scheduled a bone marrow biopsy right away.

Like you, I was worried about the level of pain and asked for light sedation. He assured me Ashley was very good and getting local would be enough. He was right, it wasn't great of course but it really wasn't that bad. My wisdom teeth were much more painful and having children, lol. It was over very quickly and I had my definitive answer which I wanted. No PV, no mylo... diseases, the big long word @loribmt uses so well, I obviously don't 😉

You get more details with the BMBX and it could prove very helpful with your treatment plans going forward.

Best of luck to you.

Hi, so What were you complaining about?
High Hemoglobin,wbcs,
platelets.I also had genetic tests done Jak2 and they came back negative. What step did the doctor take after your negative jak2 and the bone marrow biopsy? Have you been diagnosed with something other than PV ?

Hi, I had all the classic symptoms of PV and at my annual visit my bloodwork showed high HGB. We retested in 6 weeks, higher so off I went to 1st oncologist. Then 2nd who still wasn't listening to my concerns about being Jak2 neg and only 5% or less PV cases are Jak2neg.
Went to a 3rd, who agreed with my hunch & we did the BMBX.
He's a hematologist oncologist and I definitely have no blood cancer so it's likely Secondary Polycythemia. Could be a cancer lurking somewhere, we wasted 9 months and now we're doing CT scans with contrast etc to check for any malignancies in my ovaries, abdomen, lungs etc.
Will also get a sleep Apnea test done, I don't snore etc but you never know. It could be as simple as that's what's causing my body to produce too much HGB.

I'm just going to keep pushing until I feel better and have answers. I was extremely active daily with work, sports etc and the joint pain and fatigue have been debilitating. It is quite a bit better being in Florida visiting my daughter, I've always been a cold weather girl but maybe hitting 60 is making me more of a snow bird?? I'd DREAD the thought, I'm an avid skier (not this season obviously).

Keep pushing for answers, go with your gut, do lots of research and ask many questions- write them all down before any doctor visit.

Hope some of this helps.

Yeah we will go all the way ,my hemoglobin always within range 17-19 even though my blood donation .my dr wanted first to rules out secondary PV,so he checked the liver function,hepatitis viruses and came back negative only little fat liver and high alt levels then kidney function and EPO test and turned out very normally.then asked for an ultrasound pelvis-abdomen and it revealed normal no masses or focal .normal pancreas,prostate etc.and finally asked of an ultrasound for the chest and heart and lungs and they working perfectly.then he asked for iron test and it was very normal .and he told me well now we must check the bone marrow to confirm or rules out primary PV,or marrow diseases.so I’m going to do the bone marrow aspiration biopsy on march 6

Good to do BMBX and hopefully it will give you some answers. Best of luck to you 👍 🙏

Hi, I had all the classic symptoms of PV and at my annual visit my bloodwork showed high HGB. We retested in 6 weeks, higher so off I went to 1st oncologist. Then 2nd who still wasn't listening to my concerns about being Jak2 neg and only 5% or less PV cases are Jak2neg.
Went to a 3rd, who agreed with my hunch & we did the BMBX.
He's a hematologist oncologist and I definitely have no blood cancer so it's likely Secondary Polycythemia. Could be a cancer lurking somewhere, we wasted 9 months and now we're doing CT scans with contrast etc to check for any malignancies in my ovaries, abdomen, lungs etc.
Will also get a sleep Apnea test done, I don't snore etc but you never know. It could be as simple as that's what's causing my body to produce too much HGB.

I'm just going to keep pushing until I feel better and have answers. I was extremely active daily with work, sports etc and the joint pain and fatigue have been debilitating. It is quite a bit better being in Florida visiting my daughter, I've always been a cold weather girl but maybe hitting 60 is making me more of a snow bird?? I'd DREAD the thought, I'm an avid skier (not this season obviously).

Keep pushing for answers, go with your gut, do lots of research and ask many questions- write them all down before any doctor visit.

Hope some of this helps.

Hello,
Did you say skier? Are you aware that being in high altitudes thickens your blood and can raise your blood counts? I was diagnosed with PV 13 months ago at age 56. Shocked can’t begin to describe hearing that but I too was always healthy and no daily meds
What so ever. It was a rough first year but now I have a pretty good routine. My point was anyone with certain blood disorders can not be in high altitudes due to it thickening your blood. My friend had high blood counts and the doctor was doing all kinds of tests and then she revealed she was a skier and that was what caused it. You did say you have not skied this year so this is a long shot but something you should definitely speak to your doctor about. Good luck!

So you had these tests JAK2V617F,JAK2Exon12,
BCR ABL-MPL-CALR?which one was positive?
I don’t know the medical reason for what your dr said but I remember my Dr told me that if the tests I wrote up were negative he will put me to bone marrow test ,and I think maybe because one of these tests came positive so he doesn’t need to see the bone marrow,maybe he will need to see the bone marrow after you starts your treatment,so do you take aspirin? And What’s next ? What’s your next step?