Oncologist/Hematologist and CFS/FMS/MPS

Discussion in 'Fibromyalgia Main Forum' started by tcpolchies, Mar 26, 2007.

  1. tcpolchies

    tcpolchies New Member

    Anyone on this board been referred to see an oncologist -hematologist? If so, why and what was the outcome?


    T in NM.

    [This Message was Edited on 03/30/2007]
  2. tcpolchies

    tcpolchies New Member

    what test were run and what was the outcome? bumping..referred by rheumy
  3. melindami

    melindami New Member

    I was referred due to enlarged gland. Blood tests came out normal so my hematoligist is ordering another cat scan in three months to make sure if it stays same he said not to worry about it.. Part of fibro.

  4. munch1958

    munch1958 Member

    I have seen 3 different hemotologists/oncologists for possible Polycythemia Vera which is a blood cancer. My hemocrit was 53.8 so I had 4 phlebotomies (removal of blood). This really stirred my pot of ongoing infections. I need to be followed for this condition for the rest of my life. My hem expects it to be a long one too!

    I did have to go to a hospital in Chicago for a blood volume study to determine if I had a large red blood cell mass or if I was dehydrated. I also had a bone marrow biopsy. Not FUN.

    My body makes too many red and white blood cells and not enough B lymphocytes. My history points to some sort of blood disorder. In the past, I've had a prolonged bleeding time and multiple rounds of anemia with no known cause.

    It has been my experience that hematologists/oncologists know nothing about the infectious aspect of CF/FM. My doctor was interested in my tests from FFC but did not know how to intrepret them. I was sent because of a blood disorder NOT cancer issues. This kind of doctor sees both blood disorder patients and cancer patients.
  5. pam_d

    pam_d New Member

    ...because I had a blood cancer.

    Most hematologists ARE also oncologists, although I'm sure that's not always the case.

    I don't know how knowledgeable or not knowledgeable they are on CFS or FM; the subject never came up with me, FM was the LAST thing on my mind last year.

    I can say, though, that I've never had more caring, dedicated, hard-working doctors than these guys. They work or were on-call 24/7, never made me feel like I was a bother; maybe my docs were an anomaly, I don't know, but I've never encountered doctors like this in my life before.

    Anyway, I hope if you see a hematologist, you get the answers you are looking for.

  6. tcpolchies

    tcpolchies New Member

    Hello all,

    Truth be,...I'm scared. I mean I was scared at the onset of my condition way backand now this. Cancer and heart diseases run in my family.

    Rheumy stated his main concern was a rare blood disorder that could possibly cause heart problems -stroke, brought on by severe Vit -D deficiency, past and current anemia (uknown cause), a bleeder and allergic to blood clogulants -meds, (swell up like a balloon, hives, breathing problems). He dx it as hyper something, cant make out his writing, lol.

    He also mentioned a concern for hi protiens in my urine sample and swollen glands as well. His recommendations fo rnow are take a bayer asprin until I see the hematologist -oncologist, prescribed flexeril. I'm assuming that the spasms around my mid torsol -tightness have something to due with poor circulation problems.

    My hearing problems continue to date; right ear -inflammation, ringing and loss of some hearing. Sort of like muffled at times or very sensitive to noise.

    Loads of good information here. Once again thank you all.
    I really appreciate the insight.

    T in NM

    [This Message was Edited on 03/30/2007]
  7. pam_d

    pam_d New Member

    I had Leukemia. My type was AML (Acute Myloid Leukemia---there is also a chronic type of Leukemia) in which the symptoms come on aggressively and pretty suddenly.

    In my case, I developed a fever of around 102F for two weeks. This is not the low grade fever that can often just be associated with CFS, and I realized this. I felt generally lousy, too, but you will with a fever. Long story short, bloodwork was done showing very severe anemia (I had almost no white or red cells), I was admitted immediately to the hospital (they called me at work---yes I was still dragging myself to work every day), I was given a transfusion immediately, a bone marrow biopsy the next morning, and several hours later, I was introduced to a wonderful man (oncologist/hematologist) who told me I had Acute Myloid Leukemia.

    The bone marrow was further tested for specifics which tell exactly what subtype you have, and if you have a damaged chromosome causing the Leukemia---not everyone does, and some mutations can actually be favorable, they foretell a good prognosis. In my case, I DID have a damaged chromosome, but not one of the three favorable ones. Mine is called a trisomy 10, and is so rare, there are less than 30 documented cases of it as a cause of Leukemia, so there's not a lot of stats on it. And it's not something you're born with, somehow I acquired this fairly recently, and there are a lot of theories on that...but I digress.

    Fevers are only one symptom, some people notice unexplained bruises, fatigue (but of course at this board, fatigue is a GIVEN) night sweats are common, unexplained weight loss. I had just the fever, and I DID have night sweats (which I was attributing to approaching menopause).

    I was blown away by the dx, because while I didn't feel great, I was still working. I never would've believed I was that sick.

    I don't want anyone here to start thinking they have cancer, many of these symptoms overlap with LOTS of other less serious things. But DO get things like a high fever checked out, to rule stuff out if nothing else, then you can have peace of mind. I get nervous sometimes when members here say, I've been running a fever...well, a low-grade fever is one thing, very normal for CFSers---but 101-102 ISN'T "low-grade", so get stuff like that checked out.

    Hope I answered your question.


  8. pw7575

    pw7575 New Member

    When I first became ill 5 1/2 years ago one of the many doctors I saw was a hematologist. It was so long ago that I don't remember specifically what they were looking for.

    I am guessing they were checking me for cancer or any abnormalities in my blood since they had no clue at the time what was wrong with me.

    All I remember is them checking me out and taking a bunch of blood and then telling me everything came back normal which is basically the same thing that happened when I saw all of the other doctors too.

    So that was my experience. Have you been referred to one? You should ask them why if they didn't tell you.

    Take Care,
  9. maggiemae55

    maggiemae55 New Member

    I started seeing my hematologist about 7 yrs ago for extreme fatigue (before fibro/cf dx). It turned out that my ferritin was very low. My bone marrow showed scant iron. So over the years I get IV iron and it helps so much! For some reason I don't absorb iron well so i need the iron boost thru the IV.

    I always have a normal H & H, so I must have a ferritin drawn to get the real picture.

  10. bunnyfluff

    bunnyfluff Member

    you'll see I was checked by hemotologists for years- no one figured it out. I had every test, bone marrow biopsies, they were sure I had cancer- it was food allergies! That can change @ any time in your life.

    I had cannibalized my bone marrow to stay alive- not a pretty picture. I did a lot of damage to my body that has led me here today, and although my diet has changed, and my blood is better now, there is irrepairable harm done.

    So, I guess what I'm saying is, don't be too scared until the final Dx. Everyone was so sure I had some bizarre autoimmune blood cancer and I was going to die~ Not even close. Thank God!!! :)

  11. tcpolchies

    tcpolchies New Member

    Well, I'm hoping this new lil problem will be insignificant. Once I get all checked out at the hematologist -oncologist, I'll post what exactly they ran and the outcome. Maybe it will help a fellow Fibromite on this board.

    Once again thanks for your support.

    T~ in NM.
  12. tcpolchies

    tcpolchies New Member

    Test Rheumy ran were cbc which was normal, ran a check on vitamin and iron deficiencys and antiphospholipic syndrome-anticardioguant? not sure thats spelled rt, lol. Anyway came out positive APS for short, severe anemia (unknown cause) red blood count @ 25-28 now, lattice pattern leg and chest veins comes and goes with flare up and digestive problems causing black stool black vomitting. Strange I have a history of vomitting, but never black stuff. Endo scope revealed a very small healed ulcer which the gastric doc states he didn't feel this was the cause for loosing half of my blood supply. Recent hospitalization and blood transfusion didnt help any, feels weak and depressed. Amazingly enough I'm still functioning at work, lol. My rheumy suggested I take a leave of absence from work until tx is complete 1 - 2 months. Oh, he wants to IV -iron me! Sorry, about being vague and for grammer errors, I'm to freakn tired and the blurred vision in rt eye is out of control.Other than looking a lil pale one really couldn't tell Im very sick now :) Scheduled to go back to see hematologist/oncologist and again MRI.
    Spasms rt side head, face and body, swollen lymph glands armpit, groin, neck ongoing, skin rash -bleeding under teh skin at knee and thigh area... :(

    Not sure what to do about work though. Last year I quit my job due to same problems but at that time the PCP said it was only fibro and suggested I take a break which I did of course. I returned back to work on 1/2008 and been struggling since. I officially completed my extended work period and have till Oct 08 grace period through ticket to work program. I cant afford not to work as the SSDI isn't enough for me and my son to live off. Doc wants me to take time off 1 -2 months until TX is completed. I don't think they will hire me back as I had to take time off while in the hospital shortly after being hired in Jan 08. I have been capable of gettign the job done (BMS/CM) and my boss knows it however, I think they are aware I am to ill to be working. If I ask for time off medically related can I get fired?

    Hope you can make out what I am posting, lol!

    [This Message was Edited on 04/05/2008]
    [This Message was Edited on 04/05/2008]
  13. tcpolchies

    tcpolchies New Member

    Just read your response. How often do you get the IV iron and do you feel a difference in energy and pain syndrome in the body?

    I'm scheduled for this IV -Iron TX and hope to get strong enough to get back to work.

  14. tcpolchies

    tcpolchies New Member

    The hematologist didn't feel I need to be TX'ed this agressively. Thus, she RX iron three x's a day, which I couldn't handle either (almost passed out). Tried, but became very ill once again. I now take multivitamin once a day, iron -RX once a day, RX -vit -D 50 units once a week and YES I DO FEEL THE DIFFERENCE!!! Oh, I eat one serving of iron with my meal.

    Unfurtunately, the bayer asprin regimen for thickening of the blood cause internal bleeding, but did get my blood back in order and I am neg for anticoagulant/antiphlosphlid syndrom (mispelled). I am now feeling much healthier than I have since I was DX with FMS/CFS back in 97. Still, we have the positive H pilori to address, read my posting for futher info on H pilori and FMS/CFS.