Waiting And draining

Twinmomplus1
Twinmomplus1 Member Posts: 12
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I had my core needle and fine needle biopsy on my right inguial nodes done on Monday and recieved a call Tuesday afternoon from the general surgeon that they did not get enough tissue to test. The fine needle showed some lymphocytes but more blood than anything. So, I go back to the hospital Wednesday to repeat the core needle biopsy again. I now have a large lymph node in my neck on the right side which I can feel pushing against my throat, it's disturbing.  I've been running a 99.5 temperature off and on for 3 months and my lower back is killing me. I'm in shape, but losing weight daily. I have no appetite or thirst. I force myself for the sake of my children and husband. I also have this cough that started off productive a week ago but now it's dry and nagging. It feels like there is something I need to clear but it doesn't. 

We all know our bodies right? I knew something wasn't right in February when I would lay down to sleep and jolt back awake. This went on for 5 days. 5 days of no sleep at all...I broke down and went to a psychologist and psychiatrist after the ER doctors and primary's medications to sleep weren't working. I had nothing stressful going on, I just turned 33 and got Botox for myself as a present. I was sick the day after and have been since. 

My psychiatrist looked at my labs and said "something is horribly awry with your body." I'm not a usual headcase, other than baby blues after both pregnancies. 

 

I just had a CT in the hospital and it noted a 4mm nodule on my thyroid, a cyst on my left kidney, a hypodensity on my liver and a cyst on my right ovary. 

 

Do my symptoms of lymphnodes enlarged in two spots, weight loss of 16 and a half pounds in 2 and a half months, no appetite or thirst, lower back pain and dry cough sound alarming? I'm here for support during this hard time of waiting. I've been almost bed ridden for weeks. This is so unusual for me. They couldn't even get me to stay in bed after a c-section with my twins 7 years ago. I am a go getter and don't feel like I can even do the simplest tasks right now. My legs feel like concrete. My heart is breaking seeing you all who have gone through this for months before getting a diagnosis. I'm 3 months in and already feeling hopeless. 

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Yes

    Twin,

    You ask if all of your symptoms are alarming ?   YES !  But not for Lymphoma.

    How many invalid biopsies have you had now ? Most people never have one in a lifetime. Next time, go to a different surgeon !

    Couldn't sleep for five days ? That is the exact opposite of what Lymphoma does...if you had been unable to get out of bed for five days, it would have been characteristic of Lymphoma.

  • Twinmomplus1
    Twinmomplus1 Member Posts: 12
    #3
    Thank you i dont

    This was my first core needle biopsy. The general surgeon didn't do it, he had the radiologist do it. I don't mean any disrespect coming in here asking. I've been sick for awhile and the lymph nodes popping up with no pain were alarming especially when my doctor mentioned possible lymphoma or leukemia. I just want answers...My CNS went nuts aft Botox. I've been sick since and my labs have been all over the boards. Thanks for replying. I pray I find answers soon. The FNA biopsy stated "rare degenerated lymphocytes but mostly blood", what does rare degenerated mean?

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited May 2017 #4
    Twinmomplus1 said:

    Thank you i dont

    This was my first core needle biopsy. The general surgeon didn't do it, he had the radiologist do it. I don't mean any disrespect coming in here asking. I've been sick for awhile and the lymph nodes popping up with no pain were alarming especially when my doctor mentioned possible lymphoma or leukemia. I just want answers...My CNS went nuts aft Botox. I've been sick since and my labs have been all over the boards. Thanks for replying. I pray I find answers soon. The FNA biopsy stated "rare degenerated lymphocytes but mostly blood", what does rare degenerated mean?

    Fatigue

    like everyone else I know with lymphoma I suffered from fatigue not restlessness before being diagnosed. Maybe stress is an issue? I sincerely hope you do not have lymphoma and are able to get a solution to your very real and troubling symptoms. Best of luck.

  • PBL
    PBL Member Posts: 369 Member
    #5
    Botox?

    Twinmom,

    Have you mentioned to the doctors you have seen so far that botox injection which - that's what you write - seems to be the triggering point of a chain reaction? If you have, what did they have to say about it?

    If you haven't, I suggest you share that essential bit of information with the doctors who are trying to figure out your case.

    BTW, where did you get this done? Was the "Botox" administered by a dermatologist or other MD, or was it at some beauty parlor? Have you considered tracing the product that was injected that day?

  • Twinmomplus1
    Twinmomplus1 Member Posts: 12
    #6
    Botox

    Hi, yes I've told every doctor about the Botox and most say it's not it. The only ones that agreed it may be the Botox are my obgyn and psychiatrist. It's a billion dollar industry....it's hard to fight it. I've spoke with allegran who manufactures it and they know. It was done by an MD at a med spa....I usually went through my dermatologist but she was booked out so I went somewhere else. Big mistake.... ☹️ 

    The lymph nodes on the right side of my groin popped up around April 25th. I had man ultrasound two weeks later on them, which showed reactive non pathologically enlarged lymph nodes. I met with a general surgeon a week and a half later because I felt burning pain radiating from my hip to my groin where the nodes are. We discussed doing a core biopsy. I had that last Monday, Tuesday the general surgeon's office called to tell me the radiologist didn't get enough tissue with the core biopsy and that the fine needle one came back with rare degenerated lymphocyte. The general surgeon said he could remove the node to test or I could repeat the core needle biopsy. I chose the core again. 

    I now have one in my neck on the right side that's swollen. It's mobile, doesn't hurt and rubbery feeling. But quite large. I had spontaneous Pneumomediastinum and was admitted for 3 days with a cough to follow. I don't know if that made this one pop up or what? But something is going on in my body. I don't mean to offend anyone by asking questions.... my aunt had lymphoma at 15 and passed away so young so it sits on my heart. My eosinophils keep coming back elevated. Is this something you see in lymphoma labs as a marker? Thank you for your time. 

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #7
    Twinmomplus1 said:

    Botox

    Hi, yes I've told every doctor about the Botox and most say it's not it. The only ones that agreed it may be the Botox are my obgyn and psychiatrist. It's a billion dollar industry....it's hard to fight it. I've spoke with allegran who manufactures it and they know. It was done by an MD at a med spa....I usually went through my dermatologist but she was booked out so I went somewhere else. Big mistake.... ☹️ 

    The lymph nodes on the right side of my groin popped up around April 25th. I had man ultrasound two weeks later on them, which showed reactive non pathologically enlarged lymph nodes. I met with a general surgeon a week and a half later because I felt burning pain radiating from my hip to my groin where the nodes are. We discussed doing a core biopsy. I had that last Monday, Tuesday the general surgeon's office called to tell me the radiologist didn't get enough tissue with the core biopsy and that the fine needle one came back with rare degenerated lymphocyte. The general surgeon said he could remove the node to test or I could repeat the core needle biopsy. I chose the core again. 

    I now have one in my neck on the right side that's swollen. It's mobile, doesn't hurt and rubbery feeling. But quite large. I had spontaneous Pneumomediastinum and was admitted for 3 days with a cough to follow. I don't know if that made this one pop up or what? But something is going on in my body. I don't mean to offend anyone by asking questions.... my aunt had lymphoma at 15 and passed away so young so it sits on my heart. My eosinophils keep coming back elevated. Is this something you see in lymphoma labs as a marker? Thank you for your time. 

    Are all your tests being done in the same lab?

    thats the only way since different labs give different results to the same samples. Its important to use only one lab especially for blood work. The exception would be a second opinion once diagnosed.

  • Twinmomplus1
    Twinmomplus1 Member Posts: 12
    edited May 2017 #8
    Same labs

    I've been going to the same hospital for labs. Aside from last night when I fell for the 5th time and my husband took me to a different ER near my parents house in Portland. All came back normal except the eosinophils. They are repeating the biopsy Wednesday at the same hospital that I had it done at last week. My body aches, and I wish I just had some answers. I know something isn't right. They've done ANA tests, CT's of my abdomen  down and abdomen up. That's after I was admitted for the Pneumomediastinum, they couldn't find where the air was leaking from. I feel weaker daily... How do you keep pressing on? How are all of you so strong? 

  • PBL
    PBL Member Posts: 369 Member
    #9
    Elevated eosinophils...

    ... usually point to an allergic reaction or parasite infection. However, I imagine that if your levels were spectacularly elevated the doctors you have gone to would have explored that by now - or maybe they have and haven't found anything of consequence...

    As regards your latest question, I would refer you to that Soviet spy in Bridge of Spies - I really got a kick out of how, throughout the film, that character keeps replying, every time his lawyer remarks on how he doesn't seem prone to panicking: "Would it help?". Food for thought...

    Take care and do keep us posted.

     

  • po18guy
    po18guy Member Posts: 1,509 Member
    #10
    Max Former Hodgkins Stage 3 said:

    Yes

    Twin,

    You ask if all of your symptoms are alarming ?   YES !  But not for Lymphoma.

    How many invalid biopsies have you had now ? Most people never have one in a lifetime. Next time, go to a different surgeon !

    Couldn't sleep for five days ? That is the exact opposite of what Lymphoma does...if you had been unable to get out of bed for five days, it would have been characteristic of Lymphoma.

    What Max said. NOT for lymphoma.

    Low grade viral, fungal, maybe bacterial, but auto-immune a definite possibility. Even though there are 80 something auto-immune conditions, there are many times that which are simply unknown.  

  • Twinmomplus1
    Twinmomplus1 Member Posts: 12
    #11
    Worrier yes.

    I am a worrier. It's a curse, and I've done my best to nail these feelings to the cross and let our All mighty savior carry the burden. It's a hard one... I think when something tragic happens to you, you are onguard. My twins (boy and girl) are 7 and my baby girl is 5, I feel if there is lymphoma that earlier treatment would give me more time with them. It's been over a month since the groin lymph nodes popped up, and a week or more since the one in my neck popped up. What made you fight for answers? My children are my reason. Thank you for replying even if you think I'm a bit crazy. 

     

    Let no one seek his own good, but that of his neighbor. 1 Corinthians 10:24

  • po18guy
    po18guy Member Posts: 1,509 Member
    #12
    PBL said:

    Elevated eosinophils...

    ... usually point to an allergic reaction or parasite infection. However, I imagine that if your levels were spectacularly elevated the doctors you have gone to would have explored that by now - or maybe they have and haven't found anything of consequence...

    As regards your latest question, I would refer you to that Soviet spy in Bridge of Spies - I really got a kick out of how, throughout the film, that character keeps replying, every time his lawyer remarks on how he doesn't seem prone to panicking: "Would it help?". Food for thought...

    Take care and do keep us posted.

     

    Elevated eosinophils and reactions

    I have had elevated eosinophils since transplant. Both by innumerable blood tests as well as numerous skin punch biopsies. The pathology results were never clear in determining if it was an allergic response or Graft versus Host Disease, but both are a response (or over-response) of the immune system. The first thing that was considered was allergic reaction, due to the numerous medications I was receiving. We eliminated various medications which had the potential to produce a reaction, and substituted others with a lower potential. Since everything basically remained the same, it was chalked up to an immune response of undetermined cause - so I remain on immune suppression drugs. 

  • po18guy
    po18guy Member Posts: 1,509 Member
    edited May 2017 #13
    Twinmomplus1 said:

    Worrier yes.

    I am a worrier. It's a curse, and I've done my best to nail these feelings to the cross and let our All mighty savior carry the burden. It's a hard one... I think when something tragic happens to you, you are onguard. My twins (boy and girl) are 7 and my baby girl is 5, I feel if there is lymphoma that earlier treatment would give me more time with them. It's been over a month since the groin lymph nodes popped up, and a week or more since the one in my neck popped up. What made you fight for answers? My children are my reason. Thank you for replying even if you think I'm a bit crazy. 

     

    Let no one seek his own good, but that of his neighbor. 1 Corinthians 10:24

    There is disease and there is worry about disease

    I do not think that you should fixate on cancer. If these thoughts have become intrusive, you know that doctor needs to hear about them. Nothing you have posted seems consistent with lymphoma. Even the worst lymphomas are survivable - and I have had two of them three times. Plus a bone marrow cancer that is a precursor of Acute myeloid Leukemia. Are you in treatment for anxiety? 

  • Twinmomplus1
    Twinmomplus1 Member Posts: 12
    #14
    Yes

    Ever since my adverse reaction to Botox I've been in treatment for my anxiety, I see a psychologist weekly and my psychiatrist monthly. She, my psychiatrist looked at my labs and felt my lymph nodes and agreed something wasn't right. I discuss all of these feelings with my psychologist and yes I'm on meds now as a bridge to get me through this. 

    Po18guy, you are strong and blessed to have made it through. You're an inspiration and have a great testimony for others. 

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