My mind is wondering again..so worried

LacieAnn728
LacieAnn728 Member Posts: 34
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Can stage 2 hodgkin's lymphoma be cured with stem cell transplant? From the start it was only stage 2 they did not stage my relapse. I know its borderline activity in 2 nodes. That was 3 weeks ago im still waiting for insurance to approve my chemo. But I read so many storied some people going through this for 7-9 years? Im so worried! I just really thought they got mind early & the 6 cycles of ABVD would have worked...:(

Comments

  • Chris17
    Chris17 Member Posts: 175
    #2
    It is a journey

    I have been fighting my demon for almost 10 yrs, original diagnosis 2008, with 2 relapses, one in 2012 and the last 2015, so far my last scan in Sept was clear, next scan in Jan, there is no cure for this type of cancer i am sorry to say only remission. I truly believe focusing on the goal to kick its **** should be the main thing to think about. I kept a sense of humor thru it all and i think that kept me from losing it during treatments, i always say i dont live with cancer, cancer is living with me, im in charge. Good luck to you!

  • LacieAnn728
    LacieAnn728 Member Posts: 34
    #3
    Chris17 said:

    It is a journey

    I have been fighting my demon for almost 10 yrs, original diagnosis 2008, with 2 relapses, one in 2012 and the last 2015, so far my last scan in Sept was clear, next scan in Jan, there is no cure for this type of cancer i am sorry to say only remission. I truly believe focusing on the goal to kick its **** should be the main thing to think about. I kept a sense of humor thru it all and i think that kept me from losing it during treatments, i always say i dont live with cancer, cancer is living with me, im in charge. Good luck to you!

    If you don’t mind me asking

    If you don’t mind me asking what was your diagnosis? And what stage ? A lot of people told me this can Be cured what do you mean by only remission?

  • Chris17
    Chris17 Member Posts: 175
    edited December 2017 #4
    LacieAnn728 said:

    If you don’t mind me asking

    If you don’t mind me asking what was your diagnosis? And what stage ? A lot of people told me this can Be cured what do you mean by only remission?

    Diagnosis

    I was diagnosed follicular non hodgkins lymphoma stage 3 grade 2, some doctors say "cured" it is usually no evidence of disease or NED i was told its remission as there is no cure for non hodgkins lymphoma. some surivors have said that it lies dormant when called remission, i believe that if the cancer is caught in early stages that it can possibly be called "cured" after treament has been successful.

  • Kellie75
    Kellie75 Member Posts: 17
    edited December 2017 #5
    My daughter has stage 3

    My daughter has stage 3 Hodgins lymphoma. From what doctor's have told us and what I've read it can be put in remission. Some people do get it back and others have not.  I found out asking questions about your diagnosis will help you with unanswered questions or  concerns. I'm still learning so I hope this helps. 

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #6

    Rest assured, Hodgkins Lymphoma not only can be cured but a majority of those disgnosed are cured. Max may know the cure rate but I recall that 80% acheive cure. Not so with FNHL. 

  • yesyes2
    yesyes2 Member Posts: 591
    edited December 2017 #7
    Cure and Lymphomas

    It is my understanding that aggressive lymphomas for the most part are curable, non aggressive are not.  DLBC is considered cured after 5 years remission.  And ShadyGuy is correct on Hodgkins as far as I know.  Sometimes it takes a lot of chemo to get patients there however.  My NHL was agressive but because I have the Ebstein Barr Virus and a reduced immune system I can never be considered cured.  But remission is great.

  • LacieAnn728
    LacieAnn728 Member Posts: 34
    #8
    Thank you ShadyGuy & Kellie

    Thank you ShadyGuy & Kellie for the positive reply. I have classic Hodgkin’s lymphoma & after 6 cycles few nodes have some activity so I was just having a bad day thinking the wors. I just hope this line of treatment help me.

  • LacieAnn728
    LacieAnn728 Member Posts: 34
    #9
    yesyes2 said:

    Cure and Lymphomas

    It is my understanding that aggressive lymphomas for the most part are curable, non aggressive are not.  DLBC is considered cured after 5 years remission.  And ShadyGuy is correct on Hodgkins as far as I know.  Sometimes it takes a lot of chemo to get patients there however.  My NHL was agressive but because I have the Ebstein Barr Virus and a reduced immune system I can never be considered cured.  But remission is great.

    So more aggressive can be

    So more aggressive can be cured and not none aggressive? I heard Hodgkin’s lymphoma is not aggressive? My doctors say it can be cured I just read so many post of people still getting it back. I don’t have none Hodgkin’s it’s classical Hodgkin’s lymphoma with low activity in a few nodes. 

  • Kellie75
    Kellie75 Member Posts: 17
    #10
    Your very welcome. Hoping you

    Your very welcome. Hoping you have a quick recovery. Prayers going out to all that someday there will be a cure and noone will have to go through this again. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #11
    Kellie75 said:

    Your very welcome. Hoping you

    Your very welcome. Hoping you have a quick recovery. Prayers going out to all that someday there will be a cure and noone will have to go through this again. 

    Put in Perspective

    Kellie most classical Hodgkin's lymphomas (cHL) may not in definiton be curable, but most people with cHL who achive complete remission never see it again :  So why worry ?

    My strain of non-classical HL ("NLPHL") has the highest relapse rate for all HLs, but only relapses at around 15%.  This means 85% of people even with my strain never relapse.  So hope and plan for the best, since the best is overwhelmingly the most common outcome against HL generally.

    max

  • OO7
    OO7 Member Posts: 281
    edited December 2017 #12
    In time...

    it will get easier.  I have follicular NHL stage 4 grade 2.  When I finished treatment and received a great result, I was told I was good.  My ONC said it's not really remission, it's just not active and may never be active again but it could come back.   Having that said to me, I wrestled with how on earth do I live with that?  I know follicular comes back, just a matter of when.  Well I talked with a Councelor and she told me one day I wouldn't think of cancer each day.  I looked at her like she had two heads.  She was correct, in time I moved on.  Don't get me wrong, there are times I think about it but fortunately there are more times I'm NOT thinking about it.  Give yourself a pass, learn to breathe easy and be good to yourself.

    Beast regards,

    OO7

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited December 2017 #13
    Max Former Hodgkins Stage 3 said:

    Put in Perspective

    Kellie most classical Hodgkin's lymphomas (cHL) may not in definiton be curable, but most people with cHL who achive complete remission never see it again :  So why worry ?

    My strain of non-classical HL ("NLPHL") has the highest relapse rate for all HLs, but only relapses at around 15%.  This means 85% of people even with my strain never relapse.  So hope and plan for the best, since the best is overwhelmingly the most common outcome against HL generally.

    max

    Thanks for clarifying that

    i had read or been told that something like 80% live a normal lifespan with no recurrence. To me that is cured even if it does not meet the strict meaning of the word.

  • Kellie75
    Kellie75 Member Posts: 17
    #14
    I unfortunately worry about

    I unfortunately worry about everything. I do hope that everyone's cancer doesn't return. My daughter goes for her 2nd pet scan to see how the chemo is working. Hopefully everything is well and only 8 more treatments to go. Her bosses daughter had CHL and has been in remission for 3 years now but her niece also got it and had a relapse. That's where I got my information from. Again still learning all about this. 

  • LacieAnn728
    LacieAnn728 Member Posts: 34
    #15
    Thanks everyone for the

    Thanks everyone for the replies I’m still waiting on insurance to approve my chemo! It’s been almost 3 weeks I’m getting very worried like this is the last thing I should be worrying about with having cancer. I just hope whatever they gives me gets me clear scan results so I can go on with my life. Cancer is unfair and nobidy deserves this life!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #16
    LacieAnn728 said:

    Thanks everyone for the

    Thanks everyone for the replies I’m still waiting on insurance to approve my chemo! It’s been almost 3 weeks I’m getting very worried like this is the last thing I should be worrying about with having cancer. I just hope whatever they gives me gets me clear scan results so I can go on with my life. Cancer is unfair and nobidy deserves this life!

    Who ?

    Lacie,

    Who or what determines "fair" in life ?

    I understand your point, however.  Just be thankful that likely you will recover and have a long life,

    max

  • LacieAnn728
    LacieAnn728 Member Posts: 34
    edited December 2017 #17
    Max Former Hodgkins Stage 3 said:

    Who ?

    Lacie,

    Who or what determines "fair" in life ?

    I understand your point, however.  Just be thankful that likely you will recover and have a long life,

    max

    im Thankful no matter what &

    im Thankful no matter what & it doesn’t matter who can determine it , it’s a fact it’s unfair to people and their families. But that never takes away how thankful I am.

  • Fab65
    Fab65 Member Posts: 25
    edited December 2017 #18
    LacieAnn728 said:

    im Thankful no matter what &

    im Thankful no matter what & it doesn’t matter who can determine it , it’s a fact it’s unfair to people and their families. But that never takes away how thankful I am.

    Hi LacieAnn,

    Hi LacieAnn,

          I think it's awful that any insurance company can slow down health treatment.  It's absurd given that they are paid to offer this coverage when one finds the need to actually utilize it.  I mean most of us pay into it for years never really using it, and then we find ourselves needing life-saving tests and treatment, they drag their heals "approving" it.  What a crock! There needs to be more accountabiity for these companies when they drag their heels and cause us undue pain and anguish! 

     All we can do while we wait out the insurance, appointments, and test results, is enjoy every second we have with those we love.  That is something that life's curve ball cannot take away from you. What a blessing that your daughter has you to be her mom; there is no better gift to balance out the negatives in life than the blessing of our children and families.

    God bless you both and may he bring you peace and renewed health for a blessed holiday with your daughter :o)  Hang in there

  • philr828
    philr828 Member Posts: 17
    edited December 2017 #19
    LacieAnn728 said:

    Thanks everyone for the

    Thanks everyone for the replies I’m still waiting on insurance to approve my chemo! It’s been almost 3 weeks I’m getting very worried like this is the last thing I should be worrying about with having cancer. I just hope whatever they gives me gets me clear scan results so I can go on with my life. Cancer is unfair and nobidy deserves this life!

    bone marrow cancer

    Hello LacieAnn, I have non-hodgkins lymphoma, stage 4 and I am 69. Good luck with your insurance being able to give you the treatments asap. I start mine Tuesday, 2 days a week  then rest a month and have 12 treatments for 6 months. Then I will have all the tests again after 6 months to see how it is. Cancer sucks and noone needs to suffer! But we will fight it and survive

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