Polycythemia Vera: Just been diagnosed

@momoffivetoo
I think the candid conversations here are very helpful. I too am scared, of the effects of the disease, of the meds, how this disease progresses. And you are right, other cancers develop faster.
I'm having my blood checked tomorrow to see what the platelet levels are. Question for those who have been dealing with this for a while, is it normal to be seen by the P.A. for follow ups?

I tried to get my gp to order it, but he said it’s outside his scope and I have to wait for the hematologist to order it. 😩

I’ll be honest - I have thought the same thing. I’m scared, but I have confidence that the doctors will give me proper care and get me through this! I lost my sister a few years ago to endometrial cancer; she died just 11 months after diagnosis (she was 46). It was a quick and painful death, so if I do have PV, I’m grateful it’s not something much worse. My husband of 30 years has said he’s not going anywhere, and we will get through every stop of this together!

Thank you again for your candid conversation!

First, Im sorry for your loss. Second, thank God for your husband.
Now, and I will not pursue this with you again but, it takes NO expertise to order a blood draw and request you be tested for the JAK 2. It’s an ordinary blood draw. The result is either positive or negative and then a referral to specialist.
Maybe it’s the health care system you’re in but otherwise, what I’ve described is all it takes. In fact, I think if you contact an independent lab like Quest, you may be able to order it yourself.
You have pain and you’re scared and if you have PV there’s no reason to wait any longer than you have to begin treatment.
I’m sorry but I’ve heard too many stories that would have ended differently if reasonable action had been taken earlier.
If I have overstepped, I apologize.

Cristinia, I also feel lucky that of all cancers I could I acquired PV. My husband died of Pancreatic cancer and endured terrible pain and wasting.
I am newly diagnosed and took my first dose of Hydroxy urea yesterday.My doctor is starting me very slowly 500mg every other day. Except for elevated Hb Hct Plts and +JAK2 I really am symptom free. I just turned 80 and feel optimistic that I will do well.
I wish you all well and will follow along with you . I will also seek your advice as my treatment advances and the need arisrs.

Hello. Please trust what you are feeling. No one else knows you like you!
And, get an order for a blood test to determine if you have the JAK 2. Your GP can order that.
I consider myself lucky that of all the diseases and conditions that could have afflicted me as I got older, I have PV. That may sound odd but, so far, I take two capsules a day of Hydroxyurea and have a phlebotomy every two or three months. I take a low dose aspirin to help prevent blood clots. I get tired and have to pace myself but compared to so many people suffering from catastrophic illness, disease, Im OK. I was scared at the beginning because of the unknown but that’s expected. Google has its place but as I’ve said to a lot of people, a little knowledge is a dangerous thing.
You sound like a smart woman who has gone through a lot and come through it. This is just another challenge and with the right medical team you will get through it just fine.

I tried to get my gp to order it, but he said it’s outside his scope and I have to wait for the hematologist to order it. 😩

I’ll be honest - I have thought the same thing. I’m scared, but I have confidence that the doctors will give me proper care and get me through this! I lost my sister a few years ago to endometrial cancer; she died just 11 months after diagnosis (she was 46). It was a quick and painful death, so if I do have PV, I’m grateful it’s not something much worse. My husband of 30 years has said he’s not going anywhere, and we will get through every stop of this together!

Thank you again for your candid conversation!

Hello. Please trust what you are feeling. No one else knows you like you!
And, get an order for a blood test to determine if you have the JAK 2. Your GP can order that.
I consider myself lucky that of all the diseases and conditions that could have afflicted me as I got older, I have PV. That may sound odd but, so far, I take two capsules a day of Hydroxyurea and have a phlebotomy every two or three months. I take a low dose aspirin to help prevent blood clots. I get tired and have to pace myself but compared to so many people suffering from catastrophic illness, disease, Im OK. I was scared at the beginning because of the unknown but that’s expected. Google has its place but as I’ve said to a lot of people, a little knowledge is a dangerous thing.
You sound like a smart woman who has gone through a lot and come through it. This is just another challenge and with the right medical team you will get through it just fine.

Thank you so very much! I haven’t actually donated blood yet. It was thrown out as kind of an off handed comment, so I didn’t think it was really all that necessary.

At this point, I’ve realized the pain I’ve had in my toes these last few months probably wasn’t arthritis like I assumed, and the itching when I get in the tub isn’t normal either. I am compiling a list of all the weird things I’m experiencing so I can see if there’s anything that can help.

I had a radical hysterectomy two years ago as well, so I’ve attributed a lot of symptoms to surgical menopause. I’ve been losing a ton of hair as well, so my list of strange things is growing. 🤣

I’m really hoping that treatment will help my fatigue. I always push through and assume I’ll never feel better because of the lupus, but I’m excited to think I might start to feel better!

Thank you again for your communication - it makes me feel better to know I’m not crazy in thinking this is what’s going on. I don’t want this disease, but I DO want validation because I knew something was wrong. I’ve been saying it to my husband for a long time.

Hello @momoffivetoo. I’m 77 now and was diagnosed with PV in 1/2020. It was discovered by “accident” during a routine check and my complaint of severe knee pain. The blood work showed elevated hematocrit, amongst other things. My GP sent me for a blood test and it was confirmed when they found I had JAK2 mutation. He told me to find a hematologist asap in my new home state.
I had just moved resident states so I found a hematologist but after what I considered less than appropriate interest in making me understand exactly what the condition is and how it would be treated, and what the long term would be like, I found a great hematologist at Mayo who put me on appropriate dose of Hydroxyurea and phlebotomy. She listened to me, answered my long list of questions and treated me like I had the intelligence to understand what she was explaining.
I was also diagnosed with gout! (The knee and some toe pain) And, I’ve been on allopurinol which has put that under control.
I’ve discovered that as soon as my hematocrit reaches 42 I feel it in my legs and ask for a blood draw and then, as necessary, phlebotomy.
After these 7 years I’m down to routine blood draws every 3 months (from monthly).
As suggested by my doctor, I take the Hydroxyurea at night and just before bed to minimize any side effects.
Early on an abdominal ultrasound was ordered to assess any problems with spleen. It sounds like you should ask about getting one done.
Itching really hasn’t been a big problem for me. I have lost some hair, but then I’m in my 70’s and unwilling to think it is as likely to be age related as the result of the Hydroxyurea.
Last month my new GP discovered my thyroid level was very low despite my having been OK with med for years, so meds are being adjusted. And my triglycerides elevated (for the first time ever that Im aware of).
Like you I’m on the same journey to lose weight and have lost about 60 lbs over the last 3 years. So, congratulations because that’s been a problem for me since my 20’s.
I don’t think you’re “jumping the gun”. I think your GP should have sent you for the genetic test early on but done is done. I am surprised that no one at the donation center did not discover the higher than normal levels and reject you as a donor. Im told the blood they draw from me has to be tossed.
I urge you to find a hematologist who will listen to you, answer your questions and tests you, not just the condition. When I first complained of pain in my legs and my hematocrit level was very low”only” at 42.1, a nurse told me I shouldn’t have a problem at that level! Well, I did and after speaking with doctor, she ordered the phlebotomy.
You know how you feel no matter what anyone else says or what “standard” requiring phlebotomy is.
My biggest complaint at the start and throughout has been fatigue.
This is the first time I’ve shared on this forum but I thought I could help you with my experience. I hope so and I have a tendency to listen to doctors and then breakdown what I’ve been told to basic terms so sorry if I’m not as technically “spoken” as some.