Stage IV Classic Hodgkins

JesseK
JesseK Member Posts: 10
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi everyone.
I found this site late last night and decided to reach out a little this evening. I was diagnosed with Stage IV Classic Hodgkins last week. I met with my Oncologist at the VA hospital today, in addition to attending a chemotherapy informational briefing. I'll get my portacath installed Friday and begin the ABVD treatment regiment Monday. Today made it all sink in. This all started with back pain they thought was a bulged disk rubbing against my sciatic nerve. They treated it as such for a few months, and when it wasn't self correcting they went in for an MRI and saw a "shadow" on my pelvis. Now they're telling me a have cancer in nodes from my neck, to my chest, to my abdomen, to my pelvis. Apparently the pain (sent me to the ER a couple times) is actually due to the cancer deteriorating the left side of my pelvis.
I was told that 2 out of 3 people at this stage experience full remission and are alive and well 5 years later. I feel like thats just not good enough. I'm 31 years old with two children under 3 years. I just want to know I'll be around for them as the grow up.

Anyone with experience with stage IV have any good remission stories to tell a freaked out Army vet. We don't get freaked like this too often!

Comments

  • truckingalong
    truckingalong Member Posts: 445 Member
    #2
    Also had Hodgkins - highly treatable
    Jesse,

    Believe me - I know exactly what you are going through - I had similiar symptoms - had some cancer in nodes, groin, pelvic area, tailbone area and chest area. Found out in Aug 2010 and had also Mediport put in and felt like I am a pin cushion. I had 6 months of ABVD treatments - last one last Feb. Recent PET and CAT scans showed that I now am in FULL remission!

    You will get through treatments with support from family and friends - thank god for them. Please be careful and not to believe everything you read about statistics, etc. about cancer. Some are old and outdated. Hodgkins is highly treatable.

    I am truly blessed to be part of this support site as it helped me get over the bumpy roads.

    With positive thoughts,
    Liz
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Welcome
    Hi Jesse,
    I'm sorry you are having to deal with something like this, especially at such a young age. I have Follicular NHL, stage 3..neck, stomach and groin (61 years old). I finished chemo last Dec with great results. My situation is not quite the same as yours, but I'm confident the end results will be similar. The chemo will shrink your tumors and a year from now you will not feel freaked out, but instead relieved with a new sense of how wonderful life can and will be for you. You WILL be around to watch your babies grow up, so keep the faith. We will be here to help you through this journey, so keep coming back for support, or just to vent whats on your mind. Most of us have completed treatment which will help when you have questions about what you are feeling or going through. Good luck tomorrow with your porta cath placement...it's quick and fairly painless..you will just be a little sore for a few days. Please check back in anytime...we are here for you. Best wishes...Sue
    (Follicular NHL-stage3-typeA-grade2-diagnosed June 2010)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    allmost60 said:

    Welcome
    Hi Jesse,
    I'm sorry you are having to deal with something like this, especially at such a young age. I have Follicular NHL, stage 3..neck, stomach and groin (61 years old). I finished chemo last Dec with great results. My situation is not quite the same as yours, but I'm confident the end results will be similar. The chemo will shrink your tumors and a year from now you will not feel freaked out, but instead relieved with a new sense of how wonderful life can and will be for you. You WILL be around to watch your babies grow up, so keep the faith. We will be here to help you through this journey, so keep coming back for support, or just to vent whats on your mind. Most of us have completed treatment which will help when you have questions about what you are feeling or going through. Good luck tomorrow with your porta cath placement...it's quick and fairly painless..you will just be a little sore for a few days. Please check back in anytime...we are here for you. Best wishes...Sue
    (Follicular NHL-stage3-typeA-grade2-diagnosed June 2010)

    Stage 4
    Jesse,
    Same here. I was diagnosed about a year and a half ago with NHL-stage 4. Mostly in my abdominal area. I went thru 6 treatments of R-CVP and have been in remission for a year. The treatments are no fun but you will get thru them. What we have is very treatable with new treatments coming along all the time. Just stay away from all those web sites. They are mostly outdated and will scare you out of your wits. John(FNHL-1-4A-DIAG.5/10
  • JesseK
    JesseK Member Posts: 10
    #5
    truckingalong said:

    Also had Hodgkins - highly treatable
    Jesse,

    Believe me - I know exactly what you are going through - I had similiar symptoms - had some cancer in nodes, groin, pelvic area, tailbone area and chest area. Found out in Aug 2010 and had also Mediport put in and felt like I am a pin cushion. I had 6 months of ABVD treatments - last one last Feb. Recent PET and CAT scans showed that I now am in FULL remission!

    You will get through treatments with support from family and friends - thank god for them. Please be careful and not to believe everything you read about statistics, etc. about cancer. Some are old and outdated. Hodgkins is highly treatable.

    I am truly blessed to be part of this support site as it helped me get over the bumpy roads.

    With positive thoughts,
    Liz

    Congratulations! A year of
    Congratulations! A year of being in remission is right around the corner for you! That gives me a lot of hope, Liz. Thank you.
    J
  • JesseK
    JesseK Member Posts: 10
    #6
    COBRA666 said:

    Stage 4
    Jesse,
    Same here. I was diagnosed about a year and a half ago with NHL-stage 4. Mostly in my abdominal area. I went thru 6 treatments of R-CVP and have been in remission for a year. The treatments are no fun but you will get thru them. What we have is very treatable with new treatments coming along all the time. Just stay away from all those web sites. They are mostly outdated and will scare you out of your wits. John(FNHL-1-4A-DIAG.5/10

    Thanks, John. Its especially
    Thanks, John. Its especially helpful to hear that you went from stage 4 to remission after 6 treatments. I'm getting as much info as I can from my Oncologist and chemo team. Prior to that, all I had to go off was hearsay. I'm losing my ignorance as time passes. Take care.
    Jesse
  • JesseK
    JesseK Member Posts: 10
    #7
    allmost60 said:

    Welcome
    Hi Jesse,
    I'm sorry you are having to deal with something like this, especially at such a young age. I have Follicular NHL, stage 3..neck, stomach and groin (61 years old). I finished chemo last Dec with great results. My situation is not quite the same as yours, but I'm confident the end results will be similar. The chemo will shrink your tumors and a year from now you will not feel freaked out, but instead relieved with a new sense of how wonderful life can and will be for you. You WILL be around to watch your babies grow up, so keep the faith. We will be here to help you through this journey, so keep coming back for support, or just to vent whats on your mind. Most of us have completed treatment which will help when you have questions about what you are feeling or going through. Good luck tomorrow with your porta cath placement...it's quick and fairly painless..you will just be a little sore for a few days. Please check back in anytime...we are here for you. Best wishes...Sue
    (Follicular NHL-stage3-typeA-grade2-diagnosed June 2010)

    A lot calmer tonight...
    Thanks, Sue. I reread what I wrote last night and realized I was in full freak out mode. I'm doing a lot better today. Yours, Liz's and John's comments helped a lot. Its really nice that there are people out there like all of you that have beat this thing and continue to support folks like myself, just beginning to go through the wringer.
    And thank you for telling me about your porta cath placement experience. I'm nervous about all this stuff; I've never spent much time in and around hospitals.
    jus
    Gotta go...I think my fingers banging on the keyboard is waking up my son. He just conked out watching his favorite dinosaur movie in my bed.
    Jesse
  • jimwins
    jimwins Member Posts: 2,107
    #8
    JesseK said:

    A lot calmer tonight...
    Thanks, Sue. I reread what I wrote last night and realized I was in full freak out mode. I'm doing a lot better today. Yours, Liz's and John's comments helped a lot. Its really nice that there are people out there like all of you that have beat this thing and continue to support folks like myself, just beginning to go through the wringer.
    And thank you for telling me about your porta cath placement experience. I'm nervous about all this stuff; I've never spent much time in and around hospitals.
    jus
    Gotta go...I think my fingers banging on the keyboard is waking up my son. He just conked out watching his favorite dinosaur movie in my bed.
    Jesse

    Welcome Jesse
    What a sweet image - your son conking out watching his dinosaur movie!

    Jesse this is all very scary at first but you will find after you have been
    through a couple cycles it becomes somewhat routine and easier to deal with.

    Having a good attitude is very helpful in dealing and healing with all of this.
    I'm kind of a clown so my sense of humor has been a big help to me. So laugh
    and frolic when you can - it will make you feel better and take the edge off.
    Anti anxiety medication really has helped me also so you might discuss that
    with your doctor. It doesn't mean your weak - it just helps keep the "worry
    monsters" at bay.

    Use every resource you can for support - we can't have too much of that. Just
    remember there is no right or wrong way to deal with all of this. It's a
    process and it's very individual though there are many common aspects that
    folks here can share with you and offer a shoulder to lean on, an ear to listen
    and very long and warm cyber arms to hug. You can come here and rant, rave, cry,
    shout, and laugh too. It's all okay.

    Again, welcome here and big hugs,

    Jim
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #9
    one year clean
    Hey just hang in there, I'm a two time cancer survior, my second was NHL stage 4 with bone involvement, the chemo knocked it out by the eighth treatment.Stay positive my friend! Vinny
  • Matthewsmom1
    Matthewsmom1 Member Posts: 20
    #10
    I was diagnosed with Stage 4
    I was diagnosed with Stage 4 Hodgkin's while pregnant with my son 14 years ago. Had 8 months of ABVD but could not receive radiation due to lung damage from Bleomycin. I am still here 14 years later! Get strength from those precious babies and keep fighting!
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #11
    Matthewsmom1 said:

    I was diagnosed with Stage 4
    I was diagnosed with Stage 4 Hodgkin's while pregnant with my son 14 years ago. Had 8 months of ABVD but could not receive radiation due to lung damage from Bleomycin. I am still here 14 years later! Get strength from those precious babies and keep fighting!

    Matthewsmom1
    Just love to hear positive stories like this. It gives us all hope.I have been in remission for a little over a year.I also had stage 4 and was treated with R-CVP,6 treatments.Did you have Rituxan as a maintenance? John(FNHL-1-4A-5/10)
  • JesseK
    JesseK Member Posts: 10
    #12
    vinny59 said:

    one year clean
    Hey just hang in there, I'm a two time cancer survior, my second was NHL stage 4 with bone involvement, the chemo knocked it out by the eighth treatment.Stay positive my friend! Vinny

    Eighth treatment...that's
    Eighth treatment...that's great, right? I just had my first Monday, still feeling a little ill, but it's going away. Seven more times would be amazing! Thanks Vinny.
  • JesseK
    JesseK Member Posts: 10
    #13
    Matthewsmom1 said:

    I was diagnosed with Stage 4
    I was diagnosed with Stage 4 Hodgkin's while pregnant with my son 14 years ago. Had 8 months of ABVD but could not receive radiation due to lung damage from Bleomycin. I am still here 14 years later! Get strength from those precious babies and keep fighting!

    Will DO!

    Will DO!

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