Non-Hodgkin Lymphoma Small B Cell Follicular

Rockey329
Rockey329 Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I am new to this site My name is Roxanne. Two years ago I was told I had cancer and my world changed drastically that day 
I know I do not have to explain that feeling to anyone here. I was placed on a watch and wait status which only added to the stress and waiting for the other foot to drop. I went to the CTCA Center in Philadelphia and they were very good with their bedside manners but that seemed to end around September of 2016. I was seeing them every 4 months but by July of 2016 my body was telling me something was going on, and I discussed this with the doctor and requested a updated pet scan but the doctor didn't feel it was time although the last one was 13 months st that point in time. It took them until November to finally administer the test. The doctor advised me she was only doing the test so I would stop complainin. I went back to Hospital the following day for results and my doctor would not even come in the room to see me, rather she sent in one of her interns. He advised me that the lymph nodes in my neck,chest,and groin were all doubled in size and they want to do a biopsy of the largest one under my Breast area, but they are going to talk to the Surgon and decide to do a needle biopsy or just remove the entire lymph node. The cancer was re-staged from Stage 3 group 1-2 to stage 3 grade 3 then to add insult to injury they told me that they will see me in 10 weeks to advise me of their decision. I will not remark on what my Husband told the doctor but I am so happy we had a plan B and C... The following week I had the lymph node removed and a port installed for chemotheropy. My first treatment was Dec 12 and within 2 weeks of the treatment , my lymph nodes are back to normal size. Has anyone out there had any negative results with some of these larger Hospitals.

 

Comments

  • OO7
    OO7 Member Posts: 281
    edited January 2017 #2

    three doctors, two very fancy ones...

    We are and we'll always be our best advocates.

    After treatment, I fear I'm waited for the sky to fall but not too often thankfully.  I guess it's nature of the incurable beast.

    Best of luck

  • tryshz
    tryshz Member Posts: 14
    edited January 2017 #3
    I hear that!

    I too had an unfortunate and bad relationship with my first oncologist - I ask a lot of questions, and she was not a fan of that - but I am one who wants to know it all, the good, the bad and the ugly. After my 8 treatments with CVP-R, I went to Richmond, where I received Zevalin, and asked them to find me another oncologist in my area - which they kindly did. My doctor now knows I am a questioner, and he is glad to give me all the answers he has, and always gets back to me if he needs to find out more - He is the BEST! Totally agree with 007 - we need to be our own advocates, for if we aren't - who will be? Also am blessed with a wonderful husband, who is my second pair of eyes and ears thru all this.

    Hoping you have found a caring oncologist, and now are in charge of all that goes on with you! Pulling for you!!

    trish

  • ggraphix
    ggraphix Member Posts: 4
    #4
    Following

    what symptoms were you having initially?  How was it diagnosed?  Do they think it has transformed into DLBCL?  If so, insist they do a FISH panel to test for genetic mutations.  If you have them, find a cancer center that will give you something stronger than R-CHOP.

  • Rockey329
    Rockey329 Member Posts: 4
    edited January 2017 #5
    tryshz said:

    I hear that!

    I too had an unfortunate and bad relationship with my first oncologist - I ask a lot of questions, and she was not a fan of that - but I am one who wants to know it all, the good, the bad and the ugly. After my 8 treatments with CVP-R, I went to Richmond, where I received Zevalin, and asked them to find me another oncologist in my area - which they kindly did. My doctor now knows I am a questioner, and he is glad to give me all the answers he has, and always gets back to me if he needs to find out more - He is the BEST! Totally agree with 007 - we need to be our own advocates, for if we aren't - who will be? Also am blessed with a wonderful husband, who is my second pair of eyes and ears thru all this.

    Hoping you have found a caring oncologist, and now are in charge of all that goes on with you! Pulling for you!!

    trish

    Thank you for listening

    Thank you for listening

  • Rockey329
    Rockey329 Member Posts: 4
    #6
    ggraphix said:

    Following

    what symptoms were you having initially?  How was it diagnosed?  Do they think it has transformed into DLBCL?  If so, insist they do a FISH panel to test for genetic mutations.  If you have them, find a cancer center that will give you something stronger than R-CHOP.

    I was diagnosed with a auto

    I was diagnosed with a auto immune disease called  Scarcardos in 1999. I found it through a biopsy when doctors thought I had lung cancer. The lymph nodes react the same way as thy do with lymphoma in as the become inflamed inflamed and enlarged. The treatment for the condition is use of a steroids and after a two month period everything was back to normal and life went on. I saw a Pulmonary doctor on a yearly basis for check ups and no problems noted. In 2013 I was on vacation in Florida with my girl friend and I took a fall and injured myself. At the local hospital they did a cat scan of my head and chest area because of how I fell and the doctors were concerned because they saw many swollen lymph nodes in my neck and chest. I saw my primary doctor the following day and he told me if I didn't know your medical history, I would swear I am looking at someone in stage 4 cancer. FYI I am a snowbird and primary residence in New Jersey . My doctor called the Mayo Clinic in Jacksonville Fl they specialize in scarcardos and I went back and forth for a week doing visits and many tests My blood work was showing I was active and started to do a steroid treatment again. The wanted to do a Pet Scan but insurance refused to approve the due because the nodes were not large enough to meet the criteria. I went back to Jersey and still wasn't feeling well . My reason for my little vacation with my girlfriend was to get away from my Father-in-Law who was causing a lot of stress in my life. The year before my Mother-in-Law passed away and he came to live with us. I love the man but we are oil and vinegar and a key factor that can bring on a attack of the Scarcardos is stress. I kind of lived on the cusp because I have my 29 year old son who suffers from Autism and he is my primary concern and for whatever reason he started to abuse my son and hurting him I would constantly fight with him over this and he would just wave his hand at me as is he was dismissing me. I kept telling my husband what he was doing but I think he felt I was making it up because of our history. In June of 2014 after speaking to my primary up here and her feeling the nodes she had a needle biopsy done and came back positive for the cancer before that point my husband witnessed his Dad hurting his son and within 24 hours he was living with my husbands nephew and has been there since. We had talked about the issue and he told me with tears in his eyes I can't believe he would hurt his grandson like that he should be Protecting the child not hurting him. This was 2 and a half years ago and he has talked to his dad 3 times since then and silly me is blaming the entire incident on myself...my husband respectfully disagrees...

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