I’m dealing with PV for 2 1/2 years now and see my hematologist/oncologist every six months. All my labs and if there’s a dosage change, are dealt with through my My Chart. My Doctor has a great staff and I can always get a nurse on the phone if I have any concerns. The first year is tough mentally and physically. It will get better once your dosage is correct and you get a routine down. For me it was a shocker being just 56 with no other health issues. Also, the expense of all the labs and phlebotomies is very tough even with insurance. I’m grateful that the Hydroxyurea is super cheap and is working for me. It’s been around since the 1960’s and that is good to know as well. Good luck and stay positive!
@nypara66 Thank you very much for responding and for the good wishes. I share your feeling of it being a shocker getting this diagnosis especially with no other health issues present and leading an active healthy lifestyle. Same here.
I hope you check in again. I plan to do the same. Although it is a rare disease, it's very comforting to know there are quite a few of us and we can learn from each other.
Getting ready for my labs draw now.
Hello, Ive had PV for almost two years, Im 76 years old. I'm slightly overweight other than that I'm healthy. As the previous person said the first year was the most difficult for me I didn't handle the diagnosis well emotional/psycologially...I became depressed and sedentary...Hydrea dose was changed regularly which also weighed on me even though other than sleep I had none of the negative symtoms of hydrea. After 8 months I decided I was going to quit feeling sorry for myself, eat healthy and get moving...This approach has done wonders for me. Other than taking the hydrox and Doctor visits I don't think about the polycythemia ...I get my care at a major academic cancer institute and see a Nurse practitioner but my attending Oncologist/Hemotologist always sees me after. Some other advice is learn as much as you can about PV and hydrea, You tube has several polycythemia specialists that discuss the disease. Also when you visit your Doctor go with a list of questions because when you with your doctor I would forget questions I had. I'm also thankful for this forum as it helps me understand I'm not alone...Good luck and continue with all the questions you can think of.
@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’m dealing with PV for 2 1/2 years now and see my hematologist/oncologist every six months. All my labs and if there’s a dosage change, are dealt with through my My Chart. My Doctor has a great staff and I can always get a nurse on the phone if I have any concerns. The first year is tough mentally and physically. It will get better once your dosage is correct and you get a routine down. For me it was a shocker being just 56 with no other health issues. Also, the expense of all the labs and phlebotomies is very tough even with insurance. I’m grateful that the Hydroxyurea is super cheap and is working for me. It’s been around since the 1960’s and that is good to know as well. Good luck and stay positive!
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!
@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?
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.
I absolutely agree it should be simple to order, but he won’t do it. I tried to call an independent lab, but they want almost $1,000. My copay at the doc for lab work is just $25, so I’ll just have to wait.
I plan to be very proactive in my care, and will ask lots of great questions. Thank you so much!
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. I too was started on 500 mg but when I found another hematologist she immediately increased dosage to 1000mg and it worked. As I am still obese I think the dosage was based on my size.
And, while some may question my attitude you know exactly why I feel the way I do. I am so sorry for your experience and the loss of your husband to that horrible disease.
You will be OK and Im here for you if I can answer any questions and support you.
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.
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.
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!
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.
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 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. 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.
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@nypara66 Thank you very much for responding and for the good wishes. I share your feeling of it being a shocker getting this diagnosis especially with no other health issues present and leading an active healthy lifestyle. Same here.
I hope you check in again. I plan to do the same. Although it is a rare disease, it's very comforting to know there are quite a few of us and we can learn from each other.
Getting ready for my labs draw now.
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Like -
Helpful -
Hug
3 ReactionsHello, Ive had PV for almost two years, Im 76 years old. I'm slightly overweight other than that I'm healthy. As the previous person said the first year was the most difficult for me I didn't handle the diagnosis well emotional/psycologially...I became depressed and sedentary...Hydrea dose was changed regularly which also weighed on me even though other than sleep I had none of the negative symtoms of hydrea. After 8 months I decided I was going to quit feeling sorry for myself, eat healthy and get moving...This approach has done wonders for me. Other than taking the hydrox and Doctor visits I don't think about the polycythemia ...I get my care at a major academic cancer institute and see a Nurse practitioner but my attending Oncologist/Hemotologist always sees me after. Some other advice is learn as much as you can about PV and hydrea, You tube has several polycythemia specialists that discuss the disease. Also when you visit your Doctor go with a list of questions because when you with your doctor I would forget questions I had. I'm also thankful for this forum as it helps me understand I'm not alone...Good luck and continue with all the questions you can think of.
-
Like -
Helpful -
Hug
2 ReactionsI’m dealing with PV for 2 1/2 years now and see my hematologist/oncologist every six months. All my labs and if there’s a dosage change, are dealt with through my My Chart. My Doctor has a great staff and I can always get a nurse on the phone if I have any concerns. The first year is tough mentally and physically. It will get better once your dosage is correct and you get a routine down. For me it was a shocker being just 56 with no other health issues. Also, the expense of all the labs and phlebotomies is very tough even with insurance. I’m grateful that the Hydroxyurea is super cheap and is working for me. It’s been around since the 1960’s and that is good to know as well. Good luck and stay positive!
-
Like -
Helpful -
Hug
3 Reactions@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?
-
Like -
Helpful -
Hug
2 ReactionsI absolutely agree it should be simple to order, but he won’t do it. I tried to call an independent lab, but they want almost $1,000. My copay at the doc for lab work is just $25, so I’ll just have to wait.
I plan to be very proactive in my care, and will ask lots of great questions. Thank you so much!
-
Like -
Helpful -
Hug
1 ReactionHello. I too was started on 500 mg but when I found another hematologist she immediately increased dosage to 1000mg and it worked. As I am still obese I think the dosage was based on my size.
And, while some may question my attitude you know exactly why I feel the way I do. I am so sorry for your experience and the loss of your husband to that horrible disease.
You will be OK and Im here for you if I can answer any questions and support you.
-
Like -
Helpful -
Hug
2 ReactionsCristinia, 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.
-
Like -
Helpful -
Hug
3 ReactionsFirst, 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.
-
Like -
Helpful -
Hug
5 ReactionsI 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!
-
Like -
Helpful -
Hug
2 ReactionsHello. 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.
-
Like -
Helpful -
Hug
1 Reaction