I’ve been diagonosed with secondary erythrocytosis , haven’t been told much by my doctor yet as waiting on appointment but as soon as i type it in the internet it comes up with cancer. It says it’s related to polycythemia vera.
Does anyone know if this is a cancer? It’s where I have a high number of red blood cells or something.
Does anyone know if this is cancer and the treatment/cures for it?
No sugar coating please, want to know the truth.
Thanks.
Jasmine,
No need to worry. Secondary Polycythemia (Polycythemia & Erythrocytosis are largely the same term) is actually the opposite of cancer. There is Primary Polycythemia and Secondary, which is what you have. In secondary, your body is producing the extra red cells and associated proteins because of a lack of oxygen, whether that be from living at altitude, smoking, pulmonary disease, Sleep Apnea - other causes too. It's related to a hormone called EPO that is produced by the kidney. From there it travels to the bone marrow where the cells are produced. Because your body is telling you that there isn't enough oxygen in your system (from the reasons listed above), your kidneys produce more hormone, which triggers your bone marrow to produce more oxygen-containing cells. So, that EPO level in Secondary Polycythemia is usually on the high side of normal or higher than that. My number was actually low, but that number isn't definitive as it's more a guideline. In Primary Polycythemia (which is the cancer), that EPO hormone no longer regulates the red cell production in the bone marrow - essentially your bone marrow is doing what it wants, which is why it's a cancer. Once you get a proper diagnosis of what's causing the lack of oxygen, and get retested, your numbers should normalize. Sometimes they don't, so you may have to have some phlebotomies, but Secondary can be relatively benign, although not always. Let me know if you have more questions.
Joshua. You just scare the hell out of me. About 4 years ago I had pulmonary embolism. After 4 days in the hospital I was put on blood thinners and I was filling pretty good. 3 months went by and my platelets started rise from normal to 700. My hemothalogist said that being that I had a blood clot it would be prudent to get a bone marrow test . It came back positive with primary polycythemia and jak2 mutating gene. He immediately put on Hydroxyurea. I've been taking 16 - 500mg per week for the last 3 years. My platelets are now under control. Last blood test ware 344. My dr. assures me that I can live a normal life and there is no evidence that the drug or Primary Polycythemia will decrease your life expectancy. I red that all this PV ET is a form of cancer. But they really don't want to call it cancer. Any way. At my age 82. I don't expect to live for ever. In the mean time I feel pretty good physically. My problem is that for the last 2 years I lost my food taste. I've done all kids of tests and no resolution. Doctors tell me It could be from my age or head trauma from a fall I had. . Can't enjoy food our a glass of wine . It's been Hell!
Hello Jasmine. I was diagnosed with Polycythemia Vera over ten yrs ago. It was not secondary. The high red count is caused by an extremely slow-growing cancer of the bone marrow. However, I do not feel as though I have cancer because I feel normal, and lead a normal life. I take Hydroxyurea, and it controls the high red cells. I now see my Hematologist once every three months after having s CBC (blood test) to determine if the red cells are too high.
I am now 76 yrs old, and am female. I can only say that I hope you have an easy time of your disease as I've had. Please let us know what your doctor tells you, since your diagnosis sounds like a secondary disease.
Best wishes, harrishill
I make a lot of typo mistakes. I've been trying to figure out how to edit my replies. Does anyone know how to edit the reply.
Thank you Justin
I havePV but I do not know of your problem.
Hi Jasmine
I am pleased you have had no problems with Hydrea, my problem is that my kidney function is less than 1/2 to what it should be. I have primary PV. My veins are hard to find so that's a problem too. I have cut down on the Hydrea (recommended by my haematologist) but course my iron levels are low.
Hi Justin, my understanding is that a lack of taste for food can be a side effect of Hydroxyurea. Not everyone gets that one, but I have heard it is not uncommon (like mouth sores). I was on HU for a year and fortunately did not have any real adverse effects.
Good luck,
Bill
Bill. I've asked my Hemothalogist and have red all about the side affects of hydroxyurea. Loss of food taste is not one of them. But I'm not so sure .When I lost the food taste I was on hydroxyurea for over a year. I wish that I could afford Jackafi to a least try it. Unfortunately there no other drug for my condition. Anagrelide that is still available has to many side effects. So. I'm stuck. One other option is to stop taking Hydruxy for a few months to see what happens. But my Dr. does not advise me to do so. I'm desperate! It sucks!
Rhonda.When you are on hydroxyurea You get a false reading on your iron levels. To be sure have the test I think B12 done and you will find its normal. Has it was with me.
Whether they list it as a side effect or not, I know a few others have reported loss of taste.
I don't know where you but I assume its not in the US since I don't think doctors here prescribe Angrelide for PV, but Pegasys interferon is also being used here. It is expensive but a bit less that Jakafi in the USA.
Good luck,
Bill
Bill. I live in the US. South New jersey. I' have a great hemothalogist .I have an appointment next month and I will have a good talk with him. Thank you for your information
Justin
I'm in NJ too, I go to see an MPN specialist in NY (at Weill Cornell NY Presby). HU worked well for me while I was on it too. Best of luck to you.
Bill
Hi Jasmine,
It is not so very along ago that Polycythaemia (PV) was not regarded as a cancer but in the light of more recent research is today deemed a cancer. PV is normally caused by you having a defective gene from birth and this can lay dormant until much later in life when it represents itself as the disease. PV affects the red blood cells by the effect of the gene on the bone marrow where the red cells are formed. It is the over-production of these cells that provokes the illness and where the body reacts to combat this feature. There is no regular cure for PV or PRV (Polycythaemia Rubra Vera) but there are effective treatments available that will control the disorder. These are provided by the Haematologist following some basic blood tests. PV is one of the diseases included in the group of diseases that exist under the MPN label (Myelo Proliferative Neoplasms). These are very rare and serious disorders requiring professional supervision. They are also very complex. The only known cure is by stem cell replacement therapy which is a very severe undertaking generally over a period of 2 years, with close medical monitoring. The treatment is not generally recommended unless the patient is young, fit and fulfils a number of specific conditions. It is not for the faint-hearted. PV is a progressive disorder and may advance to ET (Essential Thrombocythaemia and Myelofibrosis (MF) in the MPN Group. It can eventually lead to Leukaemia but this is rare indeed. With the correct treatment for you as an individual patient these disorders can be controlled for many years. A sensible diet and standard of living will help considerably. Remember, what suits one patient with PV may not necessarily be correct for another. It is a very variable disease and complex too. Your Haematologist is a sound source of assistance. Just take things calmly, follow the professional advice you receive and don't be afraid to ask questions as you go along. There is much to learn. I have lived with this disease for over 20 years.
Best of luck. ( Erythrocytosis refers to red blood cells).
Peter.
Hello Rhonda,
I note you have a reduced kidney function. I too have this feature and have survived with it for a great many years. My problem is probably worse than yours but with care it has not prevented me doing much what I wanted. It can affect your oxygen circulation. Hydroxyurea is known as Hydroxycarbamide in UK. Just be sensible with your diet and exercise. Moderation is the word. Low iron levels are usually associated with Anaemia which is not unknown with PV. Best of luck.
Peter.
Hi Justin, The Hyhdroxyurea you are taking is good for controlling the red blood count and platelets. Yes, all of the MPN disorders (including PV) are deemed cancers now. Just take things calmly and live your life normally, as you say. Take care with the Hydroxy particularly if the dosage increases or the length of term extends too far. Loss of taste is not unknown with these PV treatments but usually settle down. You have the JAK2 gene mutation which requires regular assessment by your medics. This is due to a defect in the gene involved. Stay well.
Peter.
Hi Peter thank you for you’re response. Unfortunately I have secondary which is self inflicted supposedly by smoking, drugs and alcohol. This is why i’m confused whether it’s cancer or not as i believe primary is caused by a gene causing the bone marrow to cause too many RBC but secondary im confused what it actually is?
Thank you for your time and I’m glad you are coping well with a lifetime of suffering from PV, really gives me hope
Hi Jasmine,
Secondary Polycythaemia is where there is an increase in the total number of red blood cells that are introduced by an increase in the red cell mass but with no identifiable cause. Smoking is indeed one of the causes. This increases red cell growth thereby causing the bone marrow to compensate by producing more of these. This is often referred to as hypoxic polycythaemia which is connected to lung disease.and other separate similar causes. It is all to do with the oxygen carrying capacity of the blood. It can be cancerous. Often by eliminating the basic problem eg. smoking, etc. the Polycythaemia can be reduced or even cleared but this does not exclude the other difficulties these habits may cause, such as lung or heart disease. If the secondary polycythaemia is corrected it allows the blood to return to normal. However, if the correction is not complete, latent polycythaemia vera can result thereby requiring extra testing. So secondary polycythaemia can result in a progression to PRV (polycythaemia rubra vera). Stop smoking and any other poor habits is the answer. Good luck.
Peter.
Thanks again for reply Peter,
Stopped smoking many moons ago unfortunately, you think your invincible when you’re young right ! soon catches up.
Have an appointment with my haematologist next week so hopefully will have all my questions answered then.
Regards , Jasmine
Hi Peter.I've done a little research on Hydroxyurea vs Anagrelide As I understand they both lower your platelets. I'm awaiting for a call back from my hemothalogist and I'm going to ask him to Let me try Anagrelide for a few months. It's affordably here in the US. Maybe .Just maybe. I'll get my taste back. All drug affect deferent people in deferent ways. I started taking Xarelto 3 years ago. A few months later I could not walk .My ligaments hurt so much that I could only walk for few minutes. We changed from Xarelto to Eliquis and a month later until today the pain is a thing of the past. So; I'll keep you all posted.
Justin
ed