Husband diagnosed with Polycythemia, what does this mean?

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/polycythaemia-vera

 

I have sent a link for your info but it is being approved first.

Please do not worry unduly as yes PV is a cancer but as my specialist said 10 being terminal PV is a minus 10! In very rare cases can turn to Leaukemia.

Does he have Primary or Secondry PV? 

Not heard re secondry to liver kidney cancer???? 

When you see your specialist they will tell you.

I was diagnosed last year with Primary JAK2 Mutation Gene.

I had to have Venesections (Blood taken) fortnightly and on mini aspirin.

I get extremely tired as very low iron due to Venesections and have itching after baths/showers and red faced - common symptoms!

Also have high Liver readings which they keep an eye on.

They can put you on low dose Chemo tablets that help blood levels.

Hope this has helped some what?

My consultant is brilliant, if you have any worries write a list out my nurse said and ask at appointment.

All the best 

 

Thank you.  this is very helpful!  Hopefully we will see the hematologist today.  We have been worrying all weekend long.  I appreciate your response!!

Don't be afraid.  As long as it's managed, you can live with this for years.  It depends what the cause is.  If smoking, drinking, living at high altitude is not the reason (which you can do something about) it is probably the mutation of the JAK2 gene - this is the one I have. My blood is tested monthly and if my HCT is too high (volume of red cells to blood) I have a pint drawn off.  Having too many red blood cells, my haematologist told me, means you are more at risk from blood clots and therefore stroke, heart attack, DVT.  It is classified as a Myeloproliferative Disease which is why it's grouped in with blood cancers.  You need answers from a haematologist.  The left side of his abdomen could be an enlarged spleen which is sometimes a symptom.

Pv or pvr is a gene mutation, technically he has cancer as do I. The difference being, he will get treatment to help protect him for developing full blown blood cancer or another cancer ( can't be sure) a lot of sufferers have a range of symptoms due to pv or pvr , this maybe what he is experiencing at the moment. Unless he has been tested for actual cancer then he has actually just been diagnosed with polycthemia. I would try not to worry about it until a specialist treats him. Most of us have been in the same boat. Maybe your doctor is just being a bit insensitive. Try not to worry until then. If he is diagnosed with a type of blood cancer then take heart as it has a very high success rate. Any questions you may have just ask as folk on here are very thoughtful a helpful.

Hello

I am surprised that your primary doctor has diagnosed Polycythaemia without referring your husband to a Haematologist. Has he had any blood tests to check on his Haemoglobin and Haematocrit levels? A Haematologist will also check to see if your husband has a fault in his JAK2 gene, which will help diagnose as to whether your husband has Primary or Secondary Polycythaemia. Polycythaemia Rubra Vera is what I have. It used to be part of a collective group of diseases known as Myeloproliferative Diseases. In  2008, The World Health Organisation reclassified it as a Myeloproliferative Neoplasm.  They are a “related group of blood cancers” and although in rare cases, the condition can progress  to more serious forms of cancer, Polycythaemia Rubra Vera itself is considered by and large to be a benign disease. It does require management and treatment and it affects different people in different ways, fatigue being one of the main side effects. Some people on this forum have had the disease of over 20+ years. Secondary Polycythaemia is dependent on what the underlying cause is. If indeed your husband does have Secondary Polycythaemia, it doesn’t mean to say he has liver or kidney cancer, other underlying conditions could be causing it such as Cysts and other non- malignant growths. There are many possible causes where Secondary Polycythaemia is concerned including Hypoxia ((lack of oxygen reaching the body’s tissues) and would you believe sleep apnoea. The best person to see your husband would be a Haematologist, they are specialists in this field and are best placed to diagnose and treat your husband.

Google – Polycythaemia Rubra Vera NHS, this website gives good accurate information on Polycythaemia and will help you better understand it.

Hope this helps and good luck to you both

Keith

I had 2 different cancers prior to finding Ialso had PV./both are now in remission.  I go to a cancer clinicand have an excellent onocologist who is one who understand the ups and downs of the disease.  One can live with it but it requires medical supervision and cooperation of the patient (but use your common sense too)  I go weekly for Lab test to evalulate my numbers HCT and platelet count.  I will NOT take any meds except coated aspirin.

I also believe in a diet low in Iron No red meats, and No veggies that

are high in iron e.g. kale, spinach (the computer will give you a list) and I drink

1/2 gallon of water per day and walk as much as I can.  You may not be able

to do all of that at first...but definitely ck. for a good cancer doctor and try

the diet.  I also do not take iron replacement pills. I found that even though I loose

iron when I have a phlebotomy if I replace the iron then I need another phlebotomy.  My big complain is I am tired...(loss of iron..amenica) but I put mind over matter.

Each person's system is difference.  I have had PV for over 3yrs and I am a

Senior in America. I also believe in prayer and that has been my main stay.

I will keep you in my prayers.

Hello, I was dignosed with PV in early 2015, it was scary but I have learnt to live with it.

My spleen is enlarged and when I walk around it gets worse and the pain can be so sever I have to sit down.

Also get got blood clot etc.

I see my hematologist on regular basis and so far they take out half a litre of blood (venesection) with time I will have to start taking a very low dose chemo tablet called hydroxyurea.

Most people can live a long and semi normal life with PV, I still work fulltime but suffer the symptoms like red face and thats horrible at work,

Hope your husband be ok.

Regards / Anna

Hello. I was diaonised with Polycythemia in Jan this year, and its been 6 months now. I went through a lot of worry and tension because there is a whole business riding on me, and I have been married only for 4 years. I went through a period where I resigned myself to mortality being an immediate reality. 

6 months later, I have realized the following:-

Polycythemia is not the blood cancer it was made out to be. Yes, there is excessive production of cells (Hyper activity), but they are not cancerous. There is a 10% chance of Leaukemia, but theres a 10% chance of death anyhow - its not something anyone should worry about. 

I realized 6 months later that my life has to go on. My work has to go on. My commitments with family- wife, parents has to go on. Our plan to have children has to go on. Fortunately, the symptoms are not unmanageable, though you as the wife will have to start being patient and understand when he feels sluggish or tired, or has pain. 

He needs to properly manage his symptoms, this will be a lifelong problem... but its not terminal, and its a lot less annoying than say a Diabetes. There may be venesection (Blood letting) required once in 3 months, sometimes more often. There may be a life long Warfarin/Coumadine/Aspirin dosage required... these are things you should take care of. By life long treatments aside - this is manageable and not something you should worry. Your husband will have a long life (inshallah), and if he takes care of the symptoms a good quality life too. 

PS - You mentioned lower back pains & Abdomen pain....please check for any vein clots (either superior mesentric or portal vein). Excessive cells in the blood means blood gets thick and viscous... More chances of clots happening and this is the biggest danger your husband faces... However with a aspirin/coumadine lifelong treatment and maintaining INR between 2.5 to 3.5, you can greatly mitigate this risk. And even if a clot has by any chance been formed, human body can overcome this by recanalization of blood vessels once an aspirin dosage is started and taken for 3-4 months. 

PS - You havent mentioned how you were diagnosed. Treatment/symptoms can differ so more information would help.