PV positive & Jak2 neg - good thing??

I also have polycythemia secondary to testosterone treatments. JAK2 negative.

It is possible to have PV - the cancerous form- and be JAK2 negative. This is because PV is a slow growth cancer. It takes time for cell mutations to occur at a rate that can be detected by a random blood draw.

First, love your screen name and second, that makes total sense and I'm sure how the HemoOnc doc will respond.
I think my challenge now is I may be in an anemic state after my last phlebotomy or VV (Vampire Visit) as I like to call them. I have tremendous fatigue, like how I felt when my hemoglobin was 18.6 and pretty bad shortness of breath. I'm a young 60, usually very active every day. I go for a PT evaluation tomorrow and will ask my doc to write a script for a CBC to check my numbers.

You were very helpful, thx @boomerangbonzai!

Stay strong 💪 ✨️

Wendy, physicians consider a number of factors when diagnosing PV because most diagnostic tests are not singularly determinative. In my case, once they saw the negative JAK2, they settled on the non-cancerous secondary polycythemia diagnosis because I am on long-term testosterone and that is a known cause of polycythemia. Now, if my numbers eventually spin out of control, they will reconsider my diagnosis, redo the JAK2, and order a biopsy. This all makes sense. However, a patient with my same signs/symptoms and bloodwork but without any conditions suggesting secondary polycythemia might well be diagnosed with PV (primary and cancerous) even with a negative JAK2 because there are PV cases with a negative JAK2, at least initially, and because there is no other explanation for the patient’s signs and symptoms. Perhaps consider asking your hematologist exactly how he is balancing out all the factors in determining your diagnosis. It may be helpful to hear his reasoning.

Also consider that generally, at diagnosis, the treatments for both P and PV are the same: blood thinners and phlebotomy. The treatments generally do not diverge for quite some time. Hence, they can immediately treat the patient and eventually reevaluate the diagnosis in the future if need be.

I am also now feeling drained as a result of monthly phlebotomy sessions. But the phlebotomy has certainly helped so I am not complaining.

Consider asking your hematologist to place a standing CBC order on your chart. My Kaiser physician did and so I can go in for a CBC once per month as necessary just to see what is happening. And if my numbers go up over a predetermined level, I also have a standing order for phlebotomy. This means I needn’t be constantly contacting her for tests and such.

Again, THANK YOU!

I'm trying to educate myself as much as possible. You and this forum have been a godsend 🙏

Wendy, you are right to educate yourself. Knowledge is power. Kudos!

I use the hashtag #knowledgeispower ALL the time on SocialMedia. It sure, those that don't educate themselves or stick their head in the sand, are cutting themselves short.

Kudos to you as well!!

My doctor who I had for several years retired so then I found an excellent DO however she stopped taking PCP work after the first year which was last year so then I found another for PCP items, well it was that PCP new to me who suspected the PV after lab work and questions and sent me to her group hematologist however when I called to that office the clerk was rude to me so I struck out on my own and found one closer to me. Then I sent the PCP her name and asked to change her referral. If they are rude at the start it's not a good sign. This hematologist/oncologist is connected to the cancer center in Houston so like I told her, if it's serious or not having both hematologist and oncologist in one I have covered both. I like her too so far.
Has anyone have trouble with dropping energy, like just bam! in the day like wow just a big drop where you feel like you should lay down and take a nap feeling.?

Yes, I've been struggling with very bad fatigue and if I do to much one day, I'm shot for the next couple days. I've had to really cut back a lot on my activity, very difficult to work so I'm filing for temporary disability. Plus I have my own policy where I'll get 1k a month. I love what I do (Senior Advisor) and really want to work. I was just diagnosed in April so still trying to find the right hemoglobin number that works for me where I feelmore myself. I suspect I'm anemic from the 5 pints removed and that caused bad fatigue as well. I go this Tues for a CBC and hoping they'll approve a Saline infusion to help me feel better.
My GP feels very strongly I'll get back to very close to my usual energy level. What depresses me a little is I'm reading posts from some that have had it for years and still have bad fatigue. The shortness of breath is also bad and very painful hands every morning and seems to be lingering longer now. Big plus is after they took about 3 pints, my crashing headaches stopped.

I'm gluten free and dairy free, they cause inflammation. If I eat gluten my joints ache a lot, has no affect on my stomach. Boy do I miss good bread but not worth what it does to my body.

Hang in there, we're all in this together. This forum is a lifeline for me!

Hi Chella,

Yes, I have serious fatigue issues. I often need a nap in the afternoon. I seem to need a lot of sleep in general.

I must also pace myself. In fact, my law school accommodates me by splitting each of my exams into two pieces so that I only take one half exam per day during midterms and finals. I wonder how I will manage the bar exam!

Interesting some of your symptoms like aching hands-me too. I've been eating very little to no sugar and starch for a little over a year for a cholesterol problem so I lost 14 lbs. All before I even was aware of PV which was approx 6 months ago. I have lower and upper spinal issues with nerve damage so my pain has been attributed to it. When I was medically retired, I didn't like it either but in reflection now several years, it was the best thing. The doctor that retired me stated if you are to have any kind of life you need to retire now. I had 22 years at the time, not the 30-year retirement I had planned and I had been teaching as a college adjunct for 2 years which was going to supplement my retirement income.
Although not as planned, a different path and different hurdles that strengthen us in ways that will help others and make our spirit richer!
Im here to read anytime you want to type it out. Have a blessed day.