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Old 06-12-2012, 04:17 AM   #1
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Question We are tyring to educate ourselves about polycythemia

Hi everyone! We found this message board this morning while searching for information about polycythemia. We are lookng for an education about polycythemia and especially for information from people diagnosed with polycythemia or medical professionals who are actively treating patients with polycythemia.

My husband, R, was diagnosed with polycythemia last month and we are going through the investigative stage to determine the cause. We do know what is NOT causing it, we do not live in a high altitude area, he has never used anabolic or other steroids, his blood oxygen level is very good, so it is not hypoxia. This whole process started because of back and knee pain. His MRI shows "extremely heterogenous bone marrow signal particularly on the T1-weighted sequences". The findings say that there are small round areas of increased T1 & T2 signals at L1 and L5 that are likely hemangiomata. The radiologist's comments indicate that there are no discrete mass, compression fractures or destructive bony lesions (that's good I think) but also says clinical and lab correlation for evidence of marrow replacement process is recommended. Does anyone know what this means in laymen's terms?

R's, RBC, hematocrit & hemoglobin are high to high high (how that lab classifies I guess). He has also had an SPEP, PSA and EPO blood workup and his EPO level was high high. He had a phlebotomy treatment last week but no improvement in symptoms. His symptoms seem to track with others I have seen posted but it is hard to tell what symptoms are related to the polycythemia and what are coming from his CIDP. He was hospitalized in 2009 and diagnosed with Guillain-Barre, treated with IViG transfusions and ultimately diagnosed with Chronic Inflammatory De-Myelinating Polyneuropathy. This is an auto-immune/neurologiical disorder. Neurologically there has been some myelin re-generation in both legs but there is some permanent nerve damage. This is a chronic condition, subject to recurrence, he is on nerve pain medication and will very likely have to take it the rest of his life.

R has an initial appointment/consult this week with a hematologist/oncologist. In preparation for that our PC doctor has ordered a lot of bloodwork, repeated the CBC with Diff, chest x-rays to rule out any lung disease (all clear on this front), CT scan of abdomen and pelvis (no results yet). We are very lucky to have a primary care doctor who knows both of us very well and has always been very diligent, patient, knowledgeable and compassionate. We are very confident that she has done an excellent job of investigating this health issue and helping us as we go through this process.

From those posting on this board we would like to know:
[*]Is your polycythemia primary or secondary?[*]How much does anyone know about JAK2 gene mutation? Any ideas what one would look for in family medical history that might be indicative of this as a familiai trait?[*]If your polycythemia is secondary do you know the cause (kidney cancer, multiple myeloma, myeloproliferative disorder, lymphoma, etc.)?

Pottsey: if you find this post please respond, your previous posts indicate that you are knowledgeable about this topic and that you have gained the confidence of others as an "expert"

Any information you are willing to share would be very appreciated as we work to understand and cope with this disease and anything that might be related to it. Thank you for sharing!

R and K

 
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Old 06-13-2012, 08:22 AM   #2
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Re: We are tyring to educate ourselves about polycythemia

To determine if your husband's condition is primary or secondary, I think the common practice is to do a blood test for the JAK2 mutation. If positive, then the diagnosis is Polycythemia Vera, and likely not connected to the other issues you describe. If the diagnosis is PV, then then cause is unknown. There are no studies that suggest causes for PV; it is a randomly occurring mutation. As you age, the probability goes up. The JAK2 mutation is highly correlative with PV, but the actual pathway has not been described. There are a couple of papers that speculate how the mutation is causative, but nobody has proven anything so far.

That's a lot of unknowns. I was diagnosed with PV about a year ago, when all of those indicators went off the charts, the blood test was positive for the JAK2 mutation and bone marrow confirmed. I was on phlebotomy and then on hydroxyurea to keep the indicators closer to normal, which they have been. The good news is that, by all accounts, when stabilized by one of those two treatments, you're fine for a very long stretch.

Last edited by RADsm; 06-13-2012 at 08:24 AM. Reason: typo correction

 
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Old 06-13-2012, 06:30 PM   #3
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Re: We are tyring to educate ourselves about polycythemia

RADsm thanks so much for your reply. It seems like everyday we get another little nugget of information. The hemotologist is doing more bloodwork on Friday and I know the JAK2 test will be done then but apparently the result will take a couple of weeks. On the CT front we got good news today ... no masses in the abdomen or pelvis. I admit that the CT scan had me really concerned. Whe we found out that his EPO was very high and that there could be something wrong with the kidneys I kind of freaked out. I lost my mother to renal cell carcinoma and just hearing those words again made the last few days pretty nerve-wracking. I know we still have a journey ahead of us but I am starting to feel like each time we eliminate a real scary prospect I can breate a little easier.

From your post, as well others on this board, I am encouraged that at least we will be able to determine if it is primary or secondary and that there are treatments and medications that will help to control and manage the disease. Thanks again for your insight and all of our best to you.

R & K

 
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Old 06-21-2012, 06:07 PM   #4
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Re: We are tyring to educate ourselves about polycythemia

Hi! My name is Randy and I have been being treated for Primary PV for 12 years now.My symptoms started around 1994;but,didn't really know what was wrong with me until I was diagnosed by bone marrow test in 2000.My symptoms were red face,very annoying itch from knees to ankles after a hot shower (usually lasted about 45 min.),lots of anxiety,tightness across the chest.I spent a couple nights in the hospital (thought I was having a heart attack);but was told heart was ok.After diagnoses I was started on phlebotomies,hydrea and agrilide.
Now I see my hem every two months and take 1and 1/2 mg agrilide,50 mg Zoloft,3 mg Xanax and 2 Benadryls (good for itch).I still get little itching spells and very poor energy level.I have a friend in Canada that I met here on HB in January.SHe is 50 and we have been very supportive of each other.She is an RN and we keep up with each others appointments.By the way I'm 63 yrs young and will be 64 in Sept.
I hope I have helped U in some way.I've had a couple of bad episodes.
I had a nurse run a big needle thru a vein in my right arm in 2005 and it leaked blood into my bicep cavity and I had to have emergency surgery the next morning.THen in 2010 I had a severe pain in my left side.I visited my hem and discovered my spleen was enlarged and had to do 15 radiation treatments on it.It is enlarged somewhat again;but my hem says, we want do anything until I have another bad attack.
I hope and pray the best for UR husband and U.
Take care & God Bless;
Randy

Last edited by Pottsey1; 06-21-2012 at 06:12 PM.

 
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Old 06-22-2012, 04:48 AM   #5
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Re: We are tyring to educate ourselves about polycythemia

Hi Kat,
I am Joanne, Randy's friend from Canada who was diagnosed with PV last November. I am positive for the gene mutation and am on Hydrea 500mg twice a day along with 81mg of aspirin. Let me just tell you that when I was diagnosed..I thought it was the end of the world for me. I was devastated!!!
7 months later..my life, is pretty much normal..with the exception of a monthy blood test (CBC) and the odd phlebotomy. Certainly something I can deal with.
I had gone to the Dr with complaints of recurrent red eyes and feeling tired..that's all!! I thought it was menopause ..was I shocked when he told me what it was. Before November..I have never even heard of Polycythemia!

None of my immediate family members have it and, to my knowledge, none have had it in the past. I don't think they really understand what 'triggers' the gene to mutate. When I was researching it there seemed to be 'clusters' in certain areas of the country ....environmental? Who knows? It can't be reversed so why worry about what triggered it..there is a treatment for it ..so that is good news.
Sounds like your husband may have other health issues that may me 'clouding' a definity diagnoses. You should know better once the results for the gene mutation come it.With his elevated EPO levels they were probably suspecting a tumour somehwhere but the CT scan came back fine. So that is good.
Once you know for sure..you will be able to properly deal with it.
Good Luck and keep us updated.
PS
When I was searching for answers on this HB..I desperately wanted RANDY to respond too..I am SO glad he found me and you will be glad he found you too.
Joanne

 
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Old 06-23-2012, 04:04 AM   #6
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Re: We are tyring to educate ourselves about polycythemia

Pottsey,

Thanks so much for responding to our post! We have received more news, seems like everyday there is another nugget of information that comes to light. We have the first part of the JAK2 results back and Randy (ironic that you share a name) is JAK positive. The other portion of the JAK results won't be back until the end of next week.

The phlebs aren't working as well as the hem/onc wants so he starts hydrea today. his bone marrow aspiration is schedule for the middle of next month. I quess the big question now is what the abnormalities in the spinal bone marrow are that were visible on the MRI.

I think one of the hard things for my husband is that he works 2 (1 full-time, 1 part-time) very phyisically demanding jobs, on his feet, climbing, working on equipment, mowing, up in manlifts, cutting and hauling lumber, lifting and carrying 50-100 lbs on a regular basis. The FATIGUE and LOW ENERGY are what seem like his shadow, they just never go away. Randy comes home and CRASHES. The bone and joint pain are his other constant companion. Our hem/onc seems to think the randy's other chronic disease, Chronic Inflammatory De-Myeliinating Polyneuropathy (CIDP), which is an immune/neuro disorder and his current pre-lim diagnonsis of polychythemia vera are "possibly related", based on the immune system/blood production system connection. Randy has had several major chemical exposures and they could be what has caused the JAK2 mutation. Like CANGAL says, what does it matter what triggered it, we would like to know but if we never find out at least we know that there are some "leading suspects" in this mystery.

I have to say that the last 2 weeks have been a roller-coaster. It is good to hear from you, knowing that there are people out there who are moving forward and coping with this cancer is what we need to hear. We have learned alot and having people like you and joanne and RADsm respond to help us educate ourselves has really been a help. Thank you for your kind thoughts and god bless!

Katie & Randy

 
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Old 06-23-2012, 04:08 AM   #7
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Re: We are tyring to educate ourselves about polycythemia

Pottsey,

Thanks so much for responding to our post! We have received more news, seems like everyday there is another nugget of information that comes to light. We have the first part of the JAK2 results back and Randy (ironic that you share a name) is JAK positive. The other portion of the JAK results won't be back until the end of next week.

The phlebs aren't working as well as the hem/onc wants so he starts hydrea today. his bone marrow aspiration is schedule for the middle of next month. I quess the big question now is what the abnormalities in the spinal bone marrow are that were visible on the MRI.

I think one of the hard things for my husband is that he works 2 (1 full-time, 1 part-time) very phyisically demanding jobs, on his feet, climbing, working on equipment, mowing, up in manlifts, cutting and hauling lumber, lifting and carrying 50-100 lbs on a regular basis. The FATIGUE and LOW ENERGY are what seem like his shadow, they just never go away. Randy comes home and CRASHES. The bone and joint pain are his other constant companion. Our hem/onc seems to think the randy's other chronic disease, Chronic Inflammatory De-Myeliinating Polyneuropathy (CIDP), which is an immune/neuro disorder and his current pre-lim diagnonsis of polychythemia vera are "possibly related", based on the immune system/blood production system connection. Randy has had several major chemical exposures and they could be what has caused the JAK2 mutation. Like CANGAL says, what does it matter what triggered it, we would like to know but if we never find out at least we know that there are some "leading suspects" in this mystery.

I have to say that the last 2 weeks have been a roller-coaster. It is good to hear from you, knowing that there are people out there who are moving forward and coping with this cancer is what we need to hear. We have learned alot and having people like you and joanne and RADsm respond to help us educate ourselves has really been a help. Thank you for your kind thoughts and god bless!

Katie & Randy

 
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Old 06-23-2012, 04:33 AM   #8
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Re: We are tyring to educate ourselves about polycythemia

joanne, thanks so much for taking time to respond to our request to help educate ourselves. as you may see from my other posts on this thread, randy (my husband, not pottsey/randy) and i have had more news. we are taking this one day at a time and hopefully in the next few weeks we will have a clearer picture and a diagnosis. based on all of the info thus far randy is being treated for polycythemia vera, the hem/onc is waiting for bome marrow biopsy and results to rule out meylofibrosis but we understand that this could be a progression of the pv (or not). we are just taking it all in and coping with the shock of yet another chronic disorder.

My husband has never been inclined to be curious about "things medical" but in 2009, when he spent 5 days at UNC hospital getting IViG therapy for CIDP he realized that I am a great partner and an wonderful advocate. He has come to rely on me to, in his words, BOIL IT DOWN so I can understand what the hell they are telling me. He has now decided and informed all of his docs that I have to be present for his appointments, that I need to kept in the loop on test results, that blood tests and other tests need to be explained to me as well as him. In short he tells them, "I'd like you to meet my wife and MANAGER!"

We are truly glad to hear from you and others who are out there living and coping with this cancer and appreciate that you are willing to share your experiences. Thank you, god bless and you have a terrific weekend!

 
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Old 07-02-2012, 07:09 AM   #9
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Re: We are tyring to educate ourselves about polycythemia

Hello Everyone,

I just wanted to introduce myself here and say hello. I was diagnosed with PV in 2004 and have been on Hydrea (at varying dosages) and aspirin since. The initial diagnoses was a "blood disorder", and then a "blood disease" and then "cancer". Lordy! Every time I went back to the hematologist, the story got worse! Didn't want to go back... I was afraid they'd tell me next that I was dead. In short, hysteria got the better of me, and it didn't help. Now, I'm calm, and life is ok, aside from the constant fatigue, the red face, and the hot feet and hands (not so bad in the winter, eh?). I have a very good hematologist now who has been supportive during the times I was too exhausted to work. Medically, there's nothing much he can do, other than keeping an eye on the blood levels and adjusting dosages as needed. I take 2000 ml Hydrea a day (4 pills) and that seems to keep me on the level. I plan on asking if I can be involved in the current research programs next time I see the doctor in September. I'll let you know what comes of it, if you like.

Courage to you all.

 
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Old 07-02-2012, 12:21 PM   #10
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Re: We are tyring to educate ourselves about polycythemia

Hi! my name is Randy and I have been PV for 12 years. I too have severe fatigue, numbness and at times tingling of my fingers toes. I still experience random itching (usually in my lower legs and back of my upper arm). I am on one and a half mgs of anagrelide, one 81 mg aspirin, 3mg xanax and 2 benadryls every night for sleep and also helps with itch. I haven't had a phlebotomy in 3 years and my last visit; also was ok.
My hem says this is not a cancerous disease or affliction if U wish. He says it is in the cancer family; but, is just a bane marrow gene mutation for which there is no cure. But with a good doctor like U and I have and proper treatment we can live many years. I have heard of people living into their 80's with this cronic disorder.
Many thanks to my very special friend; Joanne (in Canada) and to our Lord in Heaven we will persevere.
Take Care & God Bless;
Randy

 
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