New to the site.. anyone care to share their experiences?

Hi my names Ian, i just signed up on this site in hopes of being able to talk to other survivors and vent out stuff i have on my chest. when i try to talk to people about my experiences they almost get scared and are uncomfortable talking about it. i hate talking to social workers at the hospital its like talking to a text book. i want to communciate with people who have been through what im going though and understand.

Comments

  • michelleb1064
    michelleb1064 Member Posts: 53
    Welcome
    Hi Ian, my name is Michelle. I read through your profile to see what kind of cancer you had. I also have been diagnosed with with stage 2B hodgkins lymphoma. I am hoping that my last treatment will be next week June 21. I notice you had trouble getting diagnosed. It took my 3+ months to get diagnosed. My symptoms were very itchy skin and a lump in my neck near the collar bone. I went to one doctor and was told that I had scabies even though he couldnt find them on my skin. I took the scabies cream and it did nothing. Second doctor said it was allergies and gave me antibotics. No improvements again. Went back and he did blood tests for liver and kidney falure and sent me home with scabies meds for the second time. Nothing again. I went to an allergist who ran all kinds of test and to my surprise, nothing found. Went back to my doctor, yelled a little and he sent me to an ENT. The ENT sent me to get a needle biopsy. Finally an answer and was referred to an oncologist and a surgeon. The surgeon removed the largest cancerous node and put in my meda port. Started chemo only few days after surgery. The first few treatments were the hardest but it seemed to get a little easier as time went on.
    Glad to hear you are finished with treatment. You are too young to go through something so hard but you will look back at this someday when and if another trial in your life comes up and say to yourself "I can do this". It really does make you look at life differently and appreciate everything it has to offer.
    Take care
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    talkng and Venting
    Ian,
    Welcome to the site that as I always say you never thought you would be on. As you know everyone on this site either has or knows someone with Lymphoma. This is the place to talk it all out and vent as well. There is always someone here to answer your questions. Feel free to just shout it all out. It will not take you long to figure out how great all these people can be. John(FNHL-1-4A-5/10)
  • ian93
    ian93 Member Posts: 12

    Welcome
    Hi Ian, my name is Michelle. I read through your profile to see what kind of cancer you had. I also have been diagnosed with with stage 2B hodgkins lymphoma. I am hoping that my last treatment will be next week June 21. I notice you had trouble getting diagnosed. It took my 3+ months to get diagnosed. My symptoms were very itchy skin and a lump in my neck near the collar bone. I went to one doctor and was told that I had scabies even though he couldnt find them on my skin. I took the scabies cream and it did nothing. Second doctor said it was allergies and gave me antibotics. No improvements again. Went back and he did blood tests for liver and kidney falure and sent me home with scabies meds for the second time. Nothing again. I went to an allergist who ran all kinds of test and to my surprise, nothing found. Went back to my doctor, yelled a little and he sent me to an ENT. The ENT sent me to get a needle biopsy. Finally an answer and was referred to an oncologist and a surgeon. The surgeon removed the largest cancerous node and put in my meda port. Started chemo only few days after surgery. The first few treatments were the hardest but it seemed to get a little easier as time went on.
    Glad to hear you are finished with treatment. You are too young to go through something so hard but you will look back at this someday when and if another trial in your life comes up and say to yourself "I can do this". It really does make you look at life differently and appreciate everything it has to offer.
    Take care

    Hey michelle, im happy to
    Hey michelle, im happy to hear you are almost done treatment. what kind of protocal did you have, did you need radiation? I had the exact symptons :itchy skin, lumps right around my collar bone, loss of weight, night sweats. It took just over a month for me id say. first they thought i had a virus and that it would go away. Then the doctor said mono and scheduled a blood test. I didnt have a gf at the time so i thought something was up. The test turned negative for mono and i got an xray. The xray showed a large mass in my chest and they suspected lymphoma. I was then scheduled for a ct scan a month later. luckily at the time my wisdom were really swallon and got to a point where my mom took me to hospital, she told them they suspected i had lymphoma and right then and there they took me upstairs to 4 north, the cancer clinic for kids. I then was scheduled for a biopsy and bonemarrow. and remained in the hospital until surgery. then started chemo a few days after. I didnt get a port put in, I had really good veins at the time and the tumour was to big to put one in anyway. but that destroyed my veins they're doing much better now though. I also found the first few ones the worst too. The first night expecially, just laying in bed by yourself thinking, trying to fall asleep but you feel sick and have an iv in your arm so you cant get comfortable. Id definetly like to talk to you more and get to know you aswell as anyone else reading this. I hope your feeling healthy you will overcome this. I did and many others.

    Take care,
    Ian
  • allmost60
    allmost60 Member Posts: 3,178
    New to the site...
    Hi Ian,
    My name is Sue and I'm 60 years old,(or young),depending on how you look at it(: My chemo was CVP-R(cyclophosphamide-vincristine-prednizone and Rituxan) less harsh than the protocol you took, and I didn't have any radiation. Thursday the 16th will be one year since my DX..Follicular NHL-stage3(no bone involvement)grade2-typeA(non-symptomatic). I knowticed visible hard tumors on my groin and neck and after a CT Scan also found out there were numerous tumors in the back of my stomach. Had a BMB..(horrible experience)and surgical removal of the largest tumor in my groin before initially getting my final diagnosis and staging. I finished my last round of CVP-R on Dec 14th and I'm now getting Rituxan maint infusions once every other month for the next 2 years. So far so good for me right now, other than a few achey joints in my hips and knees along with fatigue. The fatigue doesn't seem to be getting better, but it's do-able, as I am fortunate to be retired and not having to go to work each day. Well...thats my story..nothing exciting or profound. Hey bud...can I suggest you try pot butter or maybe cook it in foods instead of smoking it? Your so young kiddo, and I'd hate to see you develope lung issues or worse from smoking it. Just a suggestion...thats the protective mom/gramma coming out in me. Anyways, "welcome" to the group and feel free to come back and vent, share, ramble, or ask questions, anytime...someone will always be here for you. We have some young folks in our group, but they don't post very often, but us "old" folks are usually lurking close by...ha! Take care...Sue (FNHL-2-3A-6/10)
  • michelleb1064
    michelleb1064 Member Posts: 53
    ian93 said:

    Hey michelle, im happy to
    Hey michelle, im happy to hear you are almost done treatment. what kind of protocal did you have, did you need radiation? I had the exact symptons :itchy skin, lumps right around my collar bone, loss of weight, night sweats. It took just over a month for me id say. first they thought i had a virus and that it would go away. Then the doctor said mono and scheduled a blood test. I didnt have a gf at the time so i thought something was up. The test turned negative for mono and i got an xray. The xray showed a large mass in my chest and they suspected lymphoma. I was then scheduled for a ct scan a month later. luckily at the time my wisdom were really swallon and got to a point where my mom took me to hospital, she told them they suspected i had lymphoma and right then and there they took me upstairs to 4 north, the cancer clinic for kids. I then was scheduled for a biopsy and bonemarrow. and remained in the hospital until surgery. then started chemo a few days after. I didnt get a port put in, I had really good veins at the time and the tumour was to big to put one in anyway. but that destroyed my veins they're doing much better now though. I also found the first few ones the worst too. The first night expecially, just laying in bed by yourself thinking, trying to fall asleep but you feel sick and have an iv in your arm so you cant get comfortable. Id definetly like to talk to you more and get to know you aswell as anyone else reading this. I hope your feeling healthy you will overcome this. I did and many others.

    Take care,
    Ian

    Treatment
    So far I've been told that I dont need radiation but that could change after my next Pet scan. There is one spot that isnt shrinking as fast as the others. For now I am getting chemo ABVD. It's really hard on the veins and GI track. My oncologist said I had to get the port because one the chemo drugs can not be given any other way. My oncologist had me do 2 bone marrow biopsys. One on each side of the hip bone. He does them right in his office while your wide awake and can feel the pain. It hurt like all hell! I hear some people get it done while under anesthesia.All I got was a little shot of novocaine, like what the dentist gives. I hope you werent awake for that! Great chatting with you.
    Take care,
    Michelle
  • skuttlebug
    skuttlebug Member Posts: 45
    allmost60 said:

    New to the site...
    Hi Ian,
    My name is Sue and I'm 60 years old,(or young),depending on how you look at it(: My chemo was CVP-R(cyclophosphamide-vincristine-prednizone and Rituxan) less harsh than the protocol you took, and I didn't have any radiation. Thursday the 16th will be one year since my DX..Follicular NHL-stage3(no bone involvement)grade2-typeA(non-symptomatic). I knowticed visible hard tumors on my groin and neck and after a CT Scan also found out there were numerous tumors in the back of my stomach. Had a BMB..(horrible experience)and surgical removal of the largest tumor in my groin before initially getting my final diagnosis and staging. I finished my last round of CVP-R on Dec 14th and I'm now getting Rituxan maint infusions once every other month for the next 2 years. So far so good for me right now, other than a few achey joints in my hips and knees along with fatigue. The fatigue doesn't seem to be getting better, but it's do-able, as I am fortunate to be retired and not having to go to work each day. Well...thats my story..nothing exciting or profound. Hey bud...can I suggest you try pot butter or maybe cook it in foods instead of smoking it? Your so young kiddo, and I'd hate to see you develope lung issues or worse from smoking it. Just a suggestion...thats the protective mom/gramma coming out in me. Anyways, "welcome" to the group and feel free to come back and vent, share, ramble, or ask questions, anytime...someone will always be here for you. We have some young folks in our group, but they don't post very often, but us "old" folks are usually lurking close by...ha! Take care...Sue (FNHL-2-3A-6/10)

    Welcome Ian.
    Welcome to the group, which you will find alot of nice people, and people who will try to answer you, and your qustions. I have stage four follicular nhl fiffy percent in my bone marrow. I have had chemo twice. The second on R Chop, and two years of maitince rutixan.In remission, and I am taking Cobra's advice, and drinking ensure's to try and boost my immune system, and my engery levels. If you feel bad try some of the ensures-in chocolate after it gets cold it really taste pretty good.

    -Blessings(:
    ~Denise<3
  • taylorman
    taylorman Member Posts: 6
    Hi Ian,
    I just signed up

    Hi Ian,

    I just signed up today. I'd be happy to share my experiences with anyone interested. I was diagnosed 20 years ago with Hodgkins, stage IIIB. Went through MOPP/APB regimen. Biggest thing for me was keeping a positive attitude and staying busy. Also, I kept up my exercise routine as best as I could.