Secondary Erythrocytosis, is it cancer?
Posted , 9 users are following.
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.
0 likes, 25 replies
joshua72459 jasmine15475
Posted
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.
justin23294 joshua72459
Posted
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!
justin23294
Posted
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
bill71415 justin23294
Posted
Good luck,
Bill
justin23294 bill71415
Posted
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!
bill71415 justin23294
Posted
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
justin23294 bill71415
Posted
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
bill71415 justin23294
Posted
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
peter98873 justin23294
Posted
Peter.
justin23294 peter98873
Posted
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
peter98873 justin23294
Posted
Hello Justin,
In UK Anagrelide is normally used in the treatment of ET (essential thrombocythaemia) and is not generally issued because of its association with Cardiovascular disease. It is also used when patients cannot tolerate or respond to other drugs of this nature. Specialist supervision is necessary plus cardiac function tests. Eliquis is also an anti-embolism treatment. I agree when you say drugs will affect people differently. No drug will work for everyone that's for sure. Make sure that anything of this nature that you take is medically approved by your medics. Good luck.
Peter.
justin23294 peter98873
Posted
Hi Peter. Thank you for your reply.You are right. My hemothalogist got back to me and warned me about cardiovascular failure from anagrelide. So far I don't have a heart problem. He reluctantly gave me a prescription to try for a few months, starting .5 mg twice a day. But wants me to get a blood test in 2 weeks. .Based on his warnings I'm a little scare taking it. I hope that It does not harm me in anyway. I'll see how I feel after starting taking the drug this Monday. I will let everyone know
Justin
harrishill1 jasmine15475
Posted
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
margo82957 jasmine15475
Posted
rhonda83632 jasmine15475
Posted
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.
justin23294 rhonda83632
Posted
peter98873 rhonda83632
Posted
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.
harrishill1 peter98873
Posted
Hi Peter. I can't remember if you said you have switched from Hydroxy to Jakafi. I am thinking of switching to Jakafi, but would like to know if people on it have the lead legs that I do, and the cramps. Also, I am not sure if my health plan will pay for jakafi. It should, but haven't asked yet. My hematologist is new, and just starting out. He hasn't had the experience with patients yet, to know as much as my old one had. Anyway, I will talk to him next week. .harrishill
justin23294 harrishill1
Posted
Hi harrishill. I too wish I could switch to jackafi. But as mention in the past .The cost here in the US is prohibited. As I'm not eligible for any discounts or state help. If you live in the US and have Medicare plan "D" you are out of luck. Unless your income is in the poverty level.
justin
peter98873 harrishill1
Posted
Hi Harris Hill,
When I was shaken off Hydroxycarbamide (Urea in US) I was really suffering from from severe symptoms caused by the long-term and increasingly higher dosage I needed to take. There were other adverse condition too. I had been whisked into hospital too but I won't extol these extra conditions right now, but it was serious. At this time I was a participant in the drug research programme in UK relating to Ruxolitinib (Jakavi). Sadly I never received this drug as a test bed but was given the best available treatment as a placebo. Yes, it was Hydroxy, so no change at all and it did not help my situation. It was following my hospital visit as an in-patient that my Haematologist consultant recommended me for Ruxolitinib. I still receive this drug and it has absolutely changed my condition and outlook. My overall condition is as normal as can be. There are one or two side-effects but they bear no comparison to my former treatment regime. I know Zapamania (In U.S.) on this forum has a great deal of experience in what is available in USA and I am sure can offer some helpful advice to you. I would say that you deserve a change so go for it if possible.
Peter.