Bump in the Road

Shoopy
Shoopy Member Posts: 210
edited July 2013 in Lymphoma (Hodgkin and Non-Hodgkin) #1

I was diagnosed with DLBCL Stage 4 toward the end of May 2013.  It was not in my marrow.  The reason for the Stage 4 was a dime size spot on my right lung.  Treatment plan is R-CHOP every 3 weeks for 6-8 treatments.  First treatment was 6/5 and by 6/7 the lymph nodes above the diaphragm were 'gone'.  Had a transfusion on the 17th and the doctor on the 21st.  He was pleased.  Told me 'we like paitents like you--you're responding to treatment.'  My spleen, which measured 14.6cm (rib cage to where he can't feel it anymore), had shrunk to 7.0cm.  Second treatment was 6/28.  I continued to feel better.  I felt like my spleen had shrunk more.  I had been taking 1 hydrocodone right before bed to take the edge off the pain from the spleen...after the second treatment I stopped because it wasn't hurting anymore.  I'm figuring it shrunk more.

Today's appt didn't go as I thought.  Doctor says it's still at 7cm and 'that concerns him'.  He's concerned that I might not be reacting to treatment as he thought.  So...PET scan scheduled for Wednesday.  3rd Treatment scheduled for next Friday...but he said we may need to change treatments (to what I don't know).

Anyone have problems with their spleen like this?  I was told the spleen was the size of a small grapefruit...remember the oncon measures from bottom of the rib cage to where he can't feel it anymore.

This news just deflated me.  Ocon and pulmonologist telling me 'this will be cured'...argh...I hate this rollercoaster!

Comments

  • DadysGirl
    DadysGirl Member Posts: 346
    #2
    Wishing you the best of

    Wishing you the best of treatment however I thought a healthy spleen measures ~11cm

  • Shoopy
    Shoopy Member Posts: 210
    #3
    DadysGirl said:

    Wishing you the best of

    Wishing you the best of treatment however I thought a healthy spleen measures ~11cm

    Size

    Thank you.

     

    It does.  The measurements I'm talking about are the oncologists measurements from the bottom of the rib cage until he can't feel it anymore.  So...at 14cm...that would be just the top portion...

  • Unknown
    Unknown
    #4
    Spleen

    I was told that my spleen was normal size at 10 . It was 12 or "slightly enlarged" before treatment. I suppose it could vary with your stature. I am 6'4" 200 lbs. Youy never mentioned a second opinion. You might want to consider that.

  • illead
    illead Member Posts: 884 Member
    #5
    Seems odd

    My husband's spleen at diagnosis was at least 18 cm.  I say at least because there is another report that measures different areas one was over 24 and another 27cm but the report does say 18+.  At any rate it was huge.  You could see it.  I was trying to find the latest reading but without looking deeper in our "binder", I can't locate it right now.  I know it is normal now and the CT scan says non palpable. He has been in remission over a year.  I cannot imagine 7 cm being a problem.  Please don't get too worried until the docs give you an explanation.  Most lymphomas start off seeming very bad but react to chemo immediately and the staging is not like other cancers.  I think you will do fine, it sounds like you are making great progress.  So try to relax if you can and you will find this site to be very encouraging and supportive so don't hesitate to ask any questions or vent or whatever.  We have all been there and are here to help.  Becky

  • Shoopy
    Shoopy Member Posts: 210
    #6
    illead said:

    Seems odd

    My husband's spleen at diagnosis was at least 18 cm.  I say at least because there is another report that measures different areas one was over 24 and another 27cm but the report does say 18+.  At any rate it was huge.  You could see it.  I was trying to find the latest reading but without looking deeper in our "binder", I can't locate it right now.  I know it is normal now and the CT scan says non palpable. He has been in remission over a year.  I cannot imagine 7 cm being a problem.  Please don't get too worried until the docs give you an explanation.  Most lymphomas start off seeming very bad but react to chemo immediately and the staging is not like other cancers.  I think you will do fine, it sounds like you are making great progress.  So try to relax if you can and you will find this site to be very encouraging and supportive so don't hesitate to ask any questions or vent or whatever.  We have all been there and are here to help.  Becky

    spleen

    Thanks folks.  The way it was put to me: at first treatment, my spleen was the size of a large grapefruit.  I think the main point is that the doctor expected the spleen to be 'back to normal' after two R-CHOP treatments and it's not.  I can still feel it when I lay on my left side.  There isn't pain like before treatment started--but it hasn't gone back to normal.

  • Rocquie
    Rocquie Member Posts: 869 Member
    #7
    Deflated

    Try not to feel too discouraged by your doctor's words going from, "We like patients like you--you're responding" to "concerns" him, from one treatment to the next. But I do know what you mean. Sometimes my doctor seems so happy and so encouraging, other times, not so much. I saw him yesterday, and it was one of the happy and encouraging times. So naturally, I feel mentally great today. Other times I have come out of that office feeling deflated just like you. Sometimes, I don't think they realize how "touchy" we are and how much we need assurance from them. In fact, I'm pretty sure my doctor would have been sad if he'd known he had discouraged me.

    The bottom line for me is that my 8 cycles of R-CHOP worked. I have been in remission for almost 5 months now.

    Sending prayers of peace and freedom from worry your way. . .

    Rocquie

     

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