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coachmike
coachmike Member Posts: 155
in Lymphoma (Hodgkin and Non-Hodgkin) #1

hey everyone

 

Sorry its been a while since ive been here but the last two months ive been traveling like crazy with work. Anyways its been a little over a year since I had my auto stem cell transplant or DLBCL and im doing well. Been dealing with allergies and sinus issues but hey that life right lol. Hope you are all doing well and just wanted to say hello to some people who are so great and such a wonderful place of support for so many.

<Mike

Comments

  • Shoopy
    Shoopy Member Posts: 210
    #2
    Good to hear from ya

    Mike,

    Glad things are still going well for you.  I'm a little over a month away from my SCT for my DLBCL.  I've read some of your old posts--specifically the one chronicling your days in the SCT unit...very useful for me.

    Thank you!

    Karl

  • coachmike
    coachmike Member Posts: 155
    #3
    Shoopy said:

    Good to hear from ya

    Mike,

    Glad things are still going well for you.  I'm a little over a month away from my SCT for my DLBCL.  I've read some of your old posts--specifically the one chronicling your days in the SCT unit...very useful for me.

    Thank you!

    Karl

    Karl,
    I will offer any help I

    Karl,

    I will offer any help I can while you go through this upcoming SCT. I made a promise while in treatment that when I got through the ordeal I would be there for support for anyone who needed it. Please know I am here to lend an ear, give some personal insight, or just be someone to vent to. Your gonna do great and become a stronger person bc of your treatment. I know that may sound weird but I promise its true

    Mike

  • gert12
    gert12 Member Posts: 2
    #4
    Waiting on Lymph Biopsy

    New to this site so I apologize if this is the wrong forum...I am 35 Mother of 4, and scared. It  has been a long wait for dianosis, my husband and recently moved to another state and in to a new home so my symptoms I assumed were allergies to the new home. My symtoms started with a strange pain in right rib. Then came a problem with a fluid build up in my ears. Antibiotics were prescribed only to have the ear trouble persist. Then comes swollen glands and nodes in my entire neck region. They werent painful I just knew they were there. All this time and it's been a year I have been without insurance due to not being able to afford it. So they never did any tests besides an ultrasound for the right rib pain and found nothing and also a chest x-ray which found nothing. Sometime last yr 2012 in November I started having severe panic attacks which were happening daily. I finally after realizing they were not getting better caved and went on zoloft 75mg. The panic is better and as of 2 months ago obtained insurance, phew! So the tests begin, you name it blood tests, hiv, lyme, lupus.......so far this is what I have: Blood tests came back great, vitamin levels are great, white and red counts are great but still waiting on the Lyme test to come back. Also during this time a Mri of neck was performed which found enlarged nodes varying between 1.5 and 2 cm from my neck down to my armpit area. Clear in the center chest area which doc says is a good thing! A ct with contrast was also performed finding nothing in the chest and upper abdomen area. So here I am waiting till November 12th to get into an oncologist for a biopsy.  Thoughts please is this a normal thing to wait this long for a biopsy? Also thoughts on the lymphoma diagnosis?

  • Shoopy
    Shoopy Member Posts: 210
    #5
    coachmike said:

    Karl,
    I will offer any help I

    Karl,

    I will offer any help I can while you go through this upcoming SCT. I made a promise while in treatment that when I got through the ordeal I would be there for support for anyone who needed it. Please know I am here to lend an ear, give some personal insight, or just be someone to vent to. Your gonna do great and become a stronger person bc of your treatment. I know that may sound weird but I promise its true

    Mike

    Thanks

    Thank you, Mike...I might take you up on that offer.  It's funny because I have made the same promise to myself--to help others after I'm done.

  • Shoopy
    Shoopy Member Posts: 210
    #6
    gert12 said:

    Waiting on Lymph Biopsy

    New to this site so I apologize if this is the wrong forum...I am 35 Mother of 4, and scared. It  has been a long wait for dianosis, my husband and recently moved to another state and in to a new home so my symptoms I assumed were allergies to the new home. My symtoms started with a strange pain in right rib. Then came a problem with a fluid build up in my ears. Antibiotics were prescribed only to have the ear trouble persist. Then comes swollen glands and nodes in my entire neck region. They werent painful I just knew they were there. All this time and it's been a year I have been without insurance due to not being able to afford it. So they never did any tests besides an ultrasound for the right rib pain and found nothing and also a chest x-ray which found nothing. Sometime last yr 2012 in November I started having severe panic attacks which were happening daily. I finally after realizing they were not getting better caved and went on zoloft 75mg. The panic is better and as of 2 months ago obtained insurance, phew! So the tests begin, you name it blood tests, hiv, lyme, lupus.......so far this is what I have: Blood tests came back great, vitamin levels are great, white and red counts are great but still waiting on the Lyme test to come back. Also during this time a Mri of neck was performed which found enlarged nodes varying between 1.5 and 2 cm from my neck down to my armpit area. Clear in the center chest area which doc says is a good thing! A ct with contrast was also performed finding nothing in the chest and upper abdomen area. So here I am waiting till November 12th to get into an oncologist for a biopsy.  Thoughts please is this a normal thing to wait this long for a biopsy? Also thoughts on the lymphoma diagnosis?

    Gert

    Gert,

    You may want to start a separate dicussion thread for this so it doesn't goes lost...people might miss your questions.

    Anyway, I can tell you that my biopsy (actually has more than one) took no more than a week to get results.  Obviously, I'm not a doctor but if your blood tests came back great...it might not be lymphoma...a blood cancer...but keep pushing your doctors...push them hard!

    Karl

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #7
    gert12 said:

    Waiting on Lymph Biopsy

    New to this site so I apologize if this is the wrong forum...I am 35 Mother of 4, and scared. It  has been a long wait for dianosis, my husband and recently moved to another state and in to a new home so my symptoms I assumed were allergies to the new home. My symtoms started with a strange pain in right rib. Then came a problem with a fluid build up in my ears. Antibiotics were prescribed only to have the ear trouble persist. Then comes swollen glands and nodes in my entire neck region. They werent painful I just knew they were there. All this time and it's been a year I have been without insurance due to not being able to afford it. So they never did any tests besides an ultrasound for the right rib pain and found nothing and also a chest x-ray which found nothing. Sometime last yr 2012 in November I started having severe panic attacks which were happening daily. I finally after realizing they were not getting better caved and went on zoloft 75mg. The panic is better and as of 2 months ago obtained insurance, phew! So the tests begin, you name it blood tests, hiv, lyme, lupus.......so far this is what I have: Blood tests came back great, vitamin levels are great, white and red counts are great but still waiting on the Lyme test to come back. Also during this time a Mri of neck was performed which found enlarged nodes varying between 1.5 and 2 cm from my neck down to my armpit area. Clear in the center chest area which doc says is a good thing! A ct with contrast was also performed finding nothing in the chest and upper abdomen area. So here I am waiting till November 12th to get into an oncologist for a biopsy.  Thoughts please is this a normal thing to wait this long for a biopsy? Also thoughts on the lymphoma diagnosis?

    Welcome to Gert

    Gert,

    You are in a good spot to discuss the issues you have described.  However, as another said, I would start a new "Thread" here, which just means go to the top of this particular discussion and starting  a new discussion regarding your specific search for information.

    It does sound like you have reasonable cause to be concerned about Lymphoma.  It's just me, but I would call and demand that a biopsy happen sooner than mid-November.  An oncologist may not be necessary at this point -- a general surgeon will do the biopsy, and the surgeon does not need to be an oncologist.   There are surgeons who specialize in oncology surgery (especially breast, prostate, and colorectal), but many non-specialized surgeons operate on cancers also.  The surgeon who did my biopsy was "just" a general surgeon.  I only went to an oncologist after the surgeon got the biopsy results back.  Your insurance may require a different sequence of events, however.

    Best of luck.  One thing almost everyone here agrees on :  You must be in charge of your own care, and demand answers and actions in a timely manner.  No health care provider is going to be as concerned about you as you are.  It is easy to "fall between cracks" in the health care system.

    You discussed anxiety. That is not a per se symptom of Lymphoma, but of course anyone seriously thinking they may have cancer is going to be nervous. Do the right things to stay calm and as healthy as possible (eating right, getting rest, etc.) while you wait to find out what the cause of your enlarged nodes is.

    max

  • coachmike
    coachmike Member Posts: 155
    #8
    Max Former Hodgkins Stage 3 said:

    Welcome to Gert

    Gert,

    You are in a good spot to discuss the issues you have described.  However, as another said, I would start a new "Thread" here, which just means go to the top of this particular discussion and starting  a new discussion regarding your specific search for information.

    It does sound like you have reasonable cause to be concerned about Lymphoma.  It's just me, but I would call and demand that a biopsy happen sooner than mid-November.  An oncologist may not be necessary at this point -- a general surgeon will do the biopsy, and the surgeon does not need to be an oncologist.   There are surgeons who specialize in oncology surgery (especially breast, prostate, and colorectal), but many non-specialized surgeons operate on cancers also.  The surgeon who did my biopsy was "just" a general surgeon.  I only went to an oncologist after the surgeon got the biopsy results back.  Your insurance may require a different sequence of events, however.

    Best of luck.  One thing almost everyone here agrees on :  You must be in charge of your own care, and demand answers and actions in a timely manner.  No health care provider is going to be as concerned about you as you are.  It is easy to "fall between cracks" in the health care system.

    You discussed anxiety. That is not a per se symptom of Lymphoma, but of course anyone seriously thinking they may have cancer is going to be nervous. Do the right things to stay calm and as healthy as possible (eating right, getting rest, etc.) while you wait to find out what the cause of your enlarged nodes is.

    max

    ENT

    My surgeon who did my biopsy was an Ear Nose Throat dr.

     

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