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update: we know/we don't know

Discussion in 'The Safe Harbor' started by KathyC, Nov 18, 2009.

  1. KathyC

    KathyC Well-Known Member

    Received a call from oncology nurse & the good news is that it is NOT lymphoma in the spine. The bad news is that something is there & they have no idea what it is. To compound matters, the dr was called home last weekend to his poor dying mother & he has not seen the report. This nurse is 1 sharp gal but she is having difficulty interpreting everything in the report. She just wanted me to know that it was not lymphoma. She said they took a sample of actual bone as well as 2 tubes of something from his spine. I asked her if it was possible that it was a different kind of cancer in the spine & she said possibly. She doesn't know what to make of this report & said it is almost as though his spine is crumbling. And whatever this is, it is TOTALLY different from all of those suspicious lesions that were detected exactly 2 yrs ago. It looks as though we are headed to Iowa City but don't know when; she expects dr to be back on Mon.

    I guess you could say we have made a complete circle:

    Two yrs ago, in Sept of 07, we went to a dr for possible knee replacement. This dr discovered multiple lesions (he said too many to count) up & down the entire spine.

    We were sent to the oncologist who told us it appeared Mike had stage 4 cancer of the spine that had metastasized from an unknown primary source. After several wks of tests, scans, etc they could not find a primary source of cancer so they finally biopsied 1 of the lesions & it was NOT cancer. But nobody could explain these lesions.

    We were went to Iowa City in Dec of 07 where a team of drs thoroughly examined everything: the Crohn's, knees, & most importantly the spine . In Jan of 08 these drs concluded Mike did not have cancer although things looked very suspicious. One dr suggested the lesions could be pre-cancerous markers that develop 2 to 5 yrs before the actual cancer. Drs said they had never seen a spine age in this matter & agreed with the local drs that this looked suspicious. Basically they said not to be surprised if cancer developed in the future. They said his Crohn's was extremely severe & the best thing to do for his health at that time was to address the Crohn's as aggressively as possible & that is what we started to do.

    Gastro dr wanted Mike on remicade infusions every 8 wks but it took several wks to get insurance approval for this treatment. In the meantime, in Feb of 08 he landed in the hospital & nearly died from the Crohn's. Dr said another 24-36hrs & they couldn't have saved him. He has a tendency to feel really bad but not complain which is why I didn't know how sick he was. Remicade approval came while Mike was in the hospital.

    Nine months later, in a routine scan (remember we were watching for cancer to come), they found a 2 inch spot deep in the abdomen. They did a needle biopsy but did not get enough tissue for a diagnosis so they sent us home to wait 3 months for the next scan. In the mean time, we continued with the immune suppressing drugs which in effect was like putting fertilizer on a garden & what later turned out to be cancer really flourished.

    In Jan of 09, during his scan, they discovered the lymphoma. By now it had spread throughout the abdomen, up thru the chest, & around the heart. In other words, almost every where. After almost 6 months of chemo we seemed to be healing & things going pretty good except for this back pain that started in late Aug but would come & go. We mentioned it to the oncologist in Sept but he wasn't concerned as all reports looked so good. The pain came more frequently & got much worse so we went to the internist in Oct. He said it was probably just muscle spams (I didn't think so but we decided to give the new meds for this a try). Finally, the pain became unbearable & almost constant so I contacted the internist again which led us to the MRI & this biopsy. So once again, we are headed back to Iowa City. And his Crohn's has now begun to raise its ugly head again but the gastro said there is not much more to be done treatment wise because of the cancer.

    That just about sums up the past 2+ yrs for us. Still more questions than answers.

    I'll keep you informed if we EVER find out what is happening to his spine.
     
  2. ShipMaven

    ShipMaven Forever Remembered

    Kathy - what else can be said except prayers continue. The uncertainty and the contradictions are mind-boggling.

    {{{HUGS}}}

    Mary Ann
     
  3. popcorn

    popcorn Well-Known Member

    Kathy thanks for the update. Prayers are being sent out that you can find some answers and relief soon.

    Liz
     
  4. maw

    maw Wordsmith

    Cathy you are in my prayers all the time-almost sounds like what son has been going thru last six months. He is in constant pain from crumbling spine too. Keep the faith good wishes to you.
     
  5. GloBug

    GloBug Senior Flea Coller Tester

    Kathy, I am so sorry to hear this. Prayers will continue.
     
  6. jk

    jk Well-Known Member

    Kathy, waiting is the hardest part. You would think with all of this new medical technology that they would be able to tell you something more definite. Prayers are with Mike and you.
     
  7. debowah

    debowah Well-Known Member

    Kathy, this has been such a merry-go-round for both of you. The more you know, the less you know?? Prayers for a definitive answer and a productive course of treatment.
     
  8. mrsrocster

    mrsrocster Well-Known Member

    Oh Kathy, certainly this merry-go-round needs to stop, and stop with a solution. Prayers continue for quick relief from the pain your DH is contantly in and some real concrete answers. Thanks for keeping us posted!
     
  9. JacquieP

    JacquieP Well-Known Member

    What a nightmare for you! Here's hoping for a bit more information when the doctor gets back. Sometimes it's hard to cut through the "doctorese" in those reports.
     
  10. H2O babe

    H2O babe Well-Known Member

    You and Mike remain in my thought and prayers. My best to you both.

    K.
     
  11. Beryl

    Beryl Trivia Specialist

    Kathy...continued prayers and hugs to you both.
     
  12. Whimsy

    Whimsy Well-Known Member

    I can't even begin to imagine how hard this must be for all of you. Prayers continue. (((HUGS)))
     
  13. Corky

    Corky Well-Known Member

    Kathy - I am terribly sorry that Mike is going through so much. It just doesn't seem fair for one person to have so many illnesses. All I can say is that we are all here for you, that we are your friends here, and we'll do whatever we can for you. (((HUGS)))
     
  14. BarbaraK

    BarbaraK Well-Known Member

    Kathy I am sending hugs and positive thoughts to you and Mike
    ((((((((((Kathy))))))))))))))
     
  15. Cruise cutie

    Cruise cutie Well-Known Member

    hugs and prayers from us too...keep us updated..Tricky with several things to track..:(..may it all get better real soon!!..Joanne..
     
  16. JANPEP

    JANPEP Well-Known Member Community Sponsor

    Oh Kathy my heart goes out to you, the waiting is the worst & the not knowing . I hope when that dr. gets back he has some better answers, at least the nurse called to let you know what she knew & didn't leave you hanging.
    Prayers & good thoughts are on the way to both you & Mike from MN.
     
  17. seagrandaddy&seagrandma

    seagrandaddy&seagrandma Well-Known Member

    Our prayers and thoughts are with you both.
     
  18. TexasSue

    TexasSue Well-Known Member

    Prayers from here. the not knowing is so frustrating. Hopeing for some good news soon.
     
  19. Jeanie

    Jeanie Well-Known Member

    Kathy, thanks for the update, you and your family are in my thoughts
     

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