error in diagnosis

mammer
mammer Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
my wife was diagnosed with low grade non-hodgekins lymphoma two months ago and began a treatement regemin. She had been experiencing shortness of breath and the doctor said it is likely anemia, however when she got a chest xray it was apparent that one lung was alomst completely full of liquid...the doctor said she must have been misdiagnosed and likely has a more aggressive form of lymphoma...he said he never had this experience before, and began her on the chop regimen...we are now counting on the symptoms to tell if the treatment works...this came as a great disappointment and now leads to severe questioning about what the outlook might be...has anyonee had a similar experience?

Comments

  • mickfrank
    mickfrank Member Posts: 1
    #2
    Hi mammer:
    I first came down with rapid growth NHL back in 88.I was given heavy chemo and it was successful. Then last year I came down with Slow growth NHL Follicular cancer. I took Rituxan, and CHOP. There is no cure, only treatment. The slow growth is the hardest to kill off.
    When I had the rapid grown NHL my right lung filled up with fluid. i was given a high dose water pill,and it seemed to work well.
    When they gave your wife biosphy, it is very hard to distinguish between rapid and slow growth at times.
    Hope it works out for you folks.
  • lamarwall
    lamarwall Member Posts: 3
    #3
    I to have had NHL since 1987. My right lung filled
    with fluid it was drained. The fluid returned again in a about a month. This time the doctor
    drained the lung,and did a sealing of right side chest cavity. That was four years ago the fluid
    hasn't returned as of yet.I wish you well. Keep up
    the fight. LaMar
  • idacider
    idacider Member Posts: 1
    #4
    mickfrank said:

    Hi mammer:
    I first came down with rapid growth NHL back in 88.I was given heavy chemo and it was successful. Then last year I came down with Slow growth NHL Follicular cancer. I took Rituxan, and CHOP. There is no cure, only treatment. The slow growth is the hardest to kill off.
    When I had the rapid grown NHL my right lung filled up with fluid. i was given a high dose water pill,and it seemed to work well.
    When they gave your wife biosphy, it is very hard to distinguish between rapid and slow growth at times.
    Hope it works out for you folks.

    I have lost 40 lbs in six months, I got this weird itchy rash on my knees and calves and under my belly button. I had a dermatologist biopsy it and it was inconclusive. Then the night sweats started and I have two huge swollen lymphnodes under my jaw and one just starting under my arm. It is about as large as a peanut m&m. My blood work has been normal. The doc did a ct scan of cheast abdomen and pelvis and It looked normal. When I went to see him I was sick again with fever and a bladder infection. Now he has scedueled me to have my the new lumpy lymphnode under my arm removed and biopsied. I was trying to figure out which disease he is looking for and my symptoms seem to match nhl as I am 40 years old. I am so frightened, and my husband wants me to cancel the biopsy because he thinks that if I just ignore all the symptoms they will go away. He says I should think of my rapid weight loss as some sort of blessing. I am so afraid of the c word but I am more afraid that they might not figure out what is wrong with me and I will be illin forever. I feel like a sissy for taking up so much of everyones time when every test so far has been inconclusive or normal. Please someone respond. I hate the drenching night sweats. I also hate these huge lymphnodes under my chin. Has anyone ever heard of a person just having night sweats, weight loss, rashes and swollen lymph nodes for no reason at all? I think I am just going coo koo right now worring about the surgery in four days.
  • Lovetta
    Lovetta Member Posts: 3
    #5
    idacider said:

    I have lost 40 lbs in six months, I got this weird itchy rash on my knees and calves and under my belly button. I had a dermatologist biopsy it and it was inconclusive. Then the night sweats started and I have two huge swollen lymphnodes under my jaw and one just starting under my arm. It is about as large as a peanut m&m. My blood work has been normal. The doc did a ct scan of cheast abdomen and pelvis and It looked normal. When I went to see him I was sick again with fever and a bladder infection. Now he has scedueled me to have my the new lumpy lymphnode under my arm removed and biopsied. I was trying to figure out which disease he is looking for and my symptoms seem to match nhl as I am 40 years old. I am so frightened, and my husband wants me to cancel the biopsy because he thinks that if I just ignore all the symptoms they will go away. He says I should think of my rapid weight loss as some sort of blessing. I am so afraid of the c word but I am more afraid that they might not figure out what is wrong with me and I will be illin forever. I feel like a sissy for taking up so much of everyones time when every test so far has been inconclusive or normal. Please someone respond. I hate the drenching night sweats. I also hate these huge lymphnodes under my chin. Has anyone ever heard of a person just having night sweats, weight loss, rashes and swollen lymph nodes for no reason at all? I think I am just going coo koo right now worring about the surgery in four days.

    I'm really sorry to tell you what I think. We've have been dealing with indolent and intermediate Non Hodgkin's Lymphoma since Jan. 1990. I would advise you to find a different doctor. Contact the National Cancer Institute at 1 800 4cancer or www.cancer.gov. Ask them for a PDQ Report on Non Hodgkin's Lymphoma. Physicians copy, if you can get that. Otherwise the patients. (not as indepth) Go to City of Hope (Calif)or Anderson Cancer center (Texas) or some other National Cancer Center for a complete second opinion. This is urgent! Do it now.
    God bless you.
  • txjunebug
    txjunebug Member Posts: 1
    #6
    idacider said:

    I have lost 40 lbs in six months, I got this weird itchy rash on my knees and calves and under my belly button. I had a dermatologist biopsy it and it was inconclusive. Then the night sweats started and I have two huge swollen lymphnodes under my jaw and one just starting under my arm. It is about as large as a peanut m&m. My blood work has been normal. The doc did a ct scan of cheast abdomen and pelvis and It looked normal. When I went to see him I was sick again with fever and a bladder infection. Now he has scedueled me to have my the new lumpy lymphnode under my arm removed and biopsied. I was trying to figure out which disease he is looking for and my symptoms seem to match nhl as I am 40 years old. I am so frightened, and my husband wants me to cancel the biopsy because he thinks that if I just ignore all the symptoms they will go away. He says I should think of my rapid weight loss as some sort of blessing. I am so afraid of the c word but I am more afraid that they might not figure out what is wrong with me and I will be illin forever. I feel like a sissy for taking up so much of everyones time when every test so far has been inconclusive or normal. Please someone respond. I hate the drenching night sweats. I also hate these huge lymphnodes under my chin. Has anyone ever heard of a person just having night sweats, weight loss, rashes and swollen lymph nodes for no reason at all? I think I am just going coo koo right now worring about the surgery in four days.

    idacider, I see your message was on 9-26-03, please tell me you didnt give up.At 23 I was told the lump under my right arm was an infected hair, and it was cancer. I know it is frightning. But you have to know. There is hope. It can be delt with. You know your body better then anyone if you think something is wrong keep pushing untill you satisfied. Please let me know how your doing. txjunebug32@aol.com

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