Third Line DLBCL Treatment

BrianK232
BrianK232 Member Posts: 13
edited October 2015 in Lymphoma (Hodgkin and Non-Hodgkin) #1

So after two rounds of RICE, I had my Pet Scan last Thursday.  For some reason the results were released to me electronically before seeing my doctor later today.   Unfortunately it looks like one tumor grew slightly while one remained the same.   I also have 2 FDG Avid peripancreatic lymph nodes that are more prominent and 2 newer soft tissue nodules the largest being 1.1 CM.   So it looks like any stem cell transplant is on hold.  Probably looking at third line treatment, likely DHAP.  

 

I have tried to remain positive this whole time, but with each treatment that does not work it is getting harder.   I am so afraid I won't be able to see my kids grow up into men.  

 

Should know for sure what next steps are later today.

Comments

  • OO7
    OO7 Member Posts: 281
    #2
    Hang in there

    I'm having a horrid day too and we can't let anything get us down.  

    Fight the fight, wait to hear from your doctor and don't feed the monster with stress.  I know it may sound trivial but some days it may be all we have.  I look at these days as a test so I try to rise above.

    Breathe Brian.  I'm going to say a prayer that you will see your children grow into fine young men and see their children grow too!!!!!

    At one point on my treatment my nodes exploded.  They were angry off as all hell, they threw one hell of a tantrum then they were  annihilated!

    Prayers are coming your way.

     

  • BrianK232
    BrianK232 Member Posts: 13
    #3
    Looks like I am starting DHAP

    Looks like I am starting DHAP - not sure yet if it will be this week or next.   Currently scheduled for this week, but I would be in the hospital for my son's 7th birthday.   The doctor said I could postpone a week, but not sure how that could affect growth/progression.   Doctor says that this has been effective in 50% of patients that did not respond to RCHOP or RICE.   Hoping I am in the 50% that has a positive result.   If so then would move to stem cell transplant.  If not, on to other options.   Trying to stay positive.  

  • OO7
    OO7 Member Posts: 281
    #4
    BrianK232 said:

    Looks like I am starting DHAP

    Looks like I am starting DHAP - not sure yet if it will be this week or next.   Currently scheduled for this week, but I would be in the hospital for my son's 7th birthday.   The doctor said I could postpone a week, but not sure how that could affect growth/progression.   Doctor says that this has been effective in 50% of patients that did not respond to RCHOP or RICE.   Hoping I am in the 50% that has a positive result.   If so then would move to stem cell transplant.  If not, on to other options.   Trying to stay positive.  

    No reason you won't be

    There is no reason you won't be in that positive percentage group!  My best friend who is an oncologist told that to me only a few months ago.  Thruth be told, I was doubtful.  Nothing was going my way but I received the best outcome possible which I overheard my doctor tell me husband that I won't get the best result.  Then I did.

    You never know.  

    Take care of yourself so you're there for many birthdays!

    I'm so sorry for your terrible news, I know how scared you are but I'm so mad at this disease.  I hope to send you some positive fighting power your way!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    Sorry

    Brian,

    I'm terribly sorry about the delay of your SCT.  Not a huge number of folks here have had to face a third-line cure. What a trial !  The cases I can remember off-the-cuff were successul, by a large majority.

     

    Know that undoubtedly everyone here is wishing you success in this.  May you see your seven year old son turn 57 !

    max

  • lindary
    lindary Member Posts: 711 Member
    #6
    BrianK232 said:

    Looks like I am starting DHAP

    Looks like I am starting DHAP - not sure yet if it will be this week or next.   Currently scheduled for this week, but I would be in the hospital for my son's 7th birthday.   The doctor said I could postpone a week, but not sure how that could affect growth/progression.   Doctor says that this has been effective in 50% of patients that did not respond to RCHOP or RICE.   Hoping I am in the 50% that has a positive result.   If so then would move to stem cell transplant.  If not, on to other options.   Trying to stay positive.  

    SCT

    Hey Brian,

    I just had my PET & CT scans yesterday (Tues) and will see my oncologist tomorrow (Thur) for results & get bone marrow biopsy done. I am hoping the RICE did it's job. I did have to get a blood tranfusion today because the hemoglobin wasn't coming up enough.

    Good luck with your treatments. 

  • BrianK232
    BrianK232 Member Posts: 13
    #7
    Max Former Hodgkins Stage 3 said:

    Sorry

    Brian,

    I'm terribly sorry about the delay of your SCT.  Not a huge number of folks here have had to face a third-line cure. What a trial !  The cases I can remember off-the-cuff were successul, by a large majority.

     

    Know that undoubtedly everyone here is wishing you success in this.  May you see your seven year old son turn 57 !

    max

    DHAP Tomorrow

    I go into the hospital for DHAP tomorrow.  Praying for good things and thinking positive.   This treatment will work.  

     

     

  • lindary
    lindary Member Posts: 711 Member
    #8
    BrianK232 said:

    DHAP Tomorrow

    I go into the hospital for DHAP tomorrow.  Praying for good things and thinking positive.   This treatment will work.  

     

     

    DAHP

    Praying all goes well for you tomorrow. 

     

    Linda

  • OO7
    OO7 Member Posts: 281
    #9
    BrianK232 said:

    DHAP Tomorrow

    I go into the hospital for DHAP tomorrow.  Praying for good things and thinking positive.   This treatment will work.  

     

     

    Blessings Brian, Believe

    Praying for you!  

    Stare cancer down and tell it where it go!  Stay steadfast and strong, only positive conquering, warrior survivor thoughts!

    breathe....

  • BrianK232
    BrianK232 Member Posts: 13
    #10
    Update

    It's been awhile So I thought that I would take a few minutes to send an update on my current situation.  DHAP was not good for me.   It did a number on my kidneys and after one round it was decided that it should not be continued.  During that time I spent 10 days in the hospital geating my creatnine numbers back down and contracting and fighting pnuemonia.   They did a scan and the DHAP did not shrink the tumors, but there was no real growth either.  

    The day before thanksgiving I started my 4th treatment option wich is Gemcitabine with Eloxatin.  Each round consists of 2 doses, I received my second dose last Thursday.   After the second round they will do another scan and determine action from there.  There are supposedly still some other options if this does not work, other drugs, trials, radiation, etc.   I am trying to be very positive that this is the one that is going to work.  But I know in reality the further I get with something not working, the less likely it is that I will find one that does.  Praying for some miracles.

    I currently am not feeling well either, not sure if it is from the chemo, the virus that my kids seem to be passing around, or just the cancer itself.  My tumors are near my intestines and stomach so when I get an upset stomach my thought always goes there.   

    Hope everyone enjoys the holidays and has some success in their battle with the beast.  Take care!

  • lindary
    lindary Member Posts: 711 Member
    #11
    BrianK232 said:

    Update

    It's been awhile So I thought that I would take a few minutes to send an update on my current situation.  DHAP was not good for me.   It did a number on my kidneys and after one round it was decided that it should not be continued.  During that time I spent 10 days in the hospital geating my creatnine numbers back down and contracting and fighting pnuemonia.   They did a scan and the DHAP did not shrink the tumors, but there was no real growth either.  

    The day before thanksgiving I started my 4th treatment option wich is Gemcitabine with Eloxatin.  Each round consists of 2 doses, I received my second dose last Thursday.   After the second round they will do another scan and determine action from there.  There are supposedly still some other options if this does not work, other drugs, trials, radiation, etc.   I am trying to be very positive that this is the one that is going to work.  But I know in reality the further I get with something not working, the less likely it is that I will find one that does.  Praying for some miracles.

    I currently am not feeling well either, not sure if it is from the chemo, the virus that my kids seem to be passing around, or just the cancer itself.  My tumors are near my intestines and stomach so when I get an upset stomach my thought always goes there.   

    Hope everyone enjoys the holidays and has some success in their battle with the beast.  Take care!

    It seems there are always some newer drugs being tested for lymphoma or leukemia. So keep ypur spirits up and enjoy the kdis with your kids.

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