And my results are in - meeting with my doc Tuesday

MarkDavid18
MarkDavid18 Member Posts: 61
in Kidney Cancer #1

So, I had my first scans since starting IPI/NIVO (CT and MR on Friday) and the results hit my patient portal early this morning. I am trying to fight off a nasty summer cold that my son shared with me, so I was conveniently awake at 3:30AM when I got the email from Mayo. Of course, I couldn't stop myself from taking a peak. Now I know that my cancer grew very rapidly over a short two-month period after my surgery - a 2.9cm tumor appeared in my lung that wasn't on that CT right before surgery.  I also have a tumor in the back of my thigh that grew and had continued to grow the first two months of my immunotherapy. About 3 weeks ago (right before my 4th combo infusion) I noticed a significant improvement in my well-being - it was easier to breathe, pain was almost completely gone, and that darn tumor in my thigh, which started out like a marble and got as big as a baseball shrank back down to the size a shooter marble.  So, I could tell that things were working.  My doctor however, warned me that the results of this scan may not be in line with the progress I am feeling as things had worsened since the June scans before things started to improve.

So, the results were both good news and not so great news. The cancer has not spread to other organs and no new mets or nodules have formed - that is GREAT news!  My blood clots also appear to be resolved. The not so great news is that the largest tumor in my lung that was 2.9cm in June is now 3.9cm. The tumor in my leg, while I know it is smaller as it had grown so much, had changed in shape and is no longer a ball but has a protrusion which formed after the needle biopsy. Those are the highlights that I could decipher.

I am going to focus on the positives as I have never received positive news on any of my previous scans - it was like one nightmare after another last time. The glass is definitely half full for me. Of course, I will wait to make my official determination until AFTER my doctor actually reviews them with me (Googling all of the medical terminology at 3:30AM is not an adequate replacement for my oncologist). Getting scans on Friday afternoon coming into a long weekend is probably not the best time to get them done ... but this nasty cold has helped distract me.

Anyway - thank you to my fellow cancer peeps on this board. I appreciate all of the support and prayers. I have been reading about the recent losses which has been hard. I have also been reading about all of the amazing stories of survival. My journey is far from over and I am determined to outlive my prognosis ... God willing ... by many years.

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Comments

  • Retcenturion
    Retcenturion Member Posts: 240 Member
    #2
    Enjoy the good

    Mark, enjoy the good this weekend. Hopefully your up to doing something to further distract you you've earned it. Positive thoughts for the consult.

  • stub1969
    stub1969 Member Posts: 978 Member
    edited September 2018 #3
    Mark

    I like the way you are approaching the "layperson" version of your results.  There is a lot of positive information that you have shared.   I have to believe that your doctor will focus on that part as he/she reviews the results with you.  Perhaps he/she will have a plan for that naughty lung tumor.  Until you know differently...enjoy this news.

    Take care,

    Stub     

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    #4
    Mark

    The key word is "good news", that should be first and foremost on your mind over this long weekend.  You have time to think of the "other news" once you speak to your Dr. And can get more concrete info and options.  Relax and enjoy-June

  • paintergrl
    paintergrl Member Posts: 47
    #5
    I was told with immunotherapy

    I was told with immunotherapy you can have pseudo growth before tumors shrink. So, maybe that explains the lung tumor growth? It is common. Great news that there are no new spots! I hope you can enjoy your weekend and let us know what the Drs say. 

  • APny
    APny Member Posts: 1,995 Member
    #6
    So glad for the good news.

    So glad for the good news. And I'm sure they'll have a plan to deal with the lung growth. Hopefully it's a pseudo growth as Paintergirl said.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #7
    Happy for the good results.

    Happy for the good results. Keep on being positive. You are an inspiration that we need here.

  • zzajraz
    zzajraz Member Posts: 4
    #8
    ♡♡♡ 

    ♡♡♡ 

  • Manufred
    Manufred Member Posts: 241 Member
    #9
    Pseudo-growth

    I'm with Paintergrl.

    My oncologist was actually happy to see the marginal growth in tumours after the first three months, as he saw that as my supercharged immune system getting stuck into the tumours and inflaming them.  That may not be how it really happens, but a bit of growth early on is not always bad news with combination immunotherapy.

    Keep up the good work and I hope the next scan is more definitive.

    Best Wishes,

    Fred

  • Allochka
    Allochka Member Posts: 1,072 Member
    #10
    Hi,

    Hi,

    if you know for sure that your cancer has been spreading rapidly to more and more places before treatment, and now it is still confined to previously reported spots - then it means it is somewhat stopped in its tracks. And this sounds like good news for me!

    Good luch with further treatment, Mark!

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    edited September 2018 #11
    I think you can be very

    I think you can be very optimistic! Yes, it is hard to read one's own report on the patient portal. That initial stab of fear and grave anxiety as you open it....

    I think it sounds like good news! No spread to other organs is totally fantastic. I'm sure your Oncologist will have a plan for the lung growth. Hang tough as you always have and it's looking better than one may have expected!! 

    Happy for you and keep on going!! You truly are a great inspiration to us all.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #12
    Mark

    I really am in awe of your strength and determination 

    So pleased you are getting a geart response

    hang tught

    Hugs

    Annie

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #13
    I love when my oncologist smiles

    My oncologist told me in June that if I didn’t start treatment I had months to live. I was fortunate to get fast tracked and had my first infusion a week later. Three months later not only am I still alive, my body is kicking this cancer’s butt. My doctor had a huge smile on his face as reviewed my scan results. Significant progress - no new growths and for the most part tumor shrinkage and other signs that the tumors are dying. The one tumor that is larger in my lung, he believes, is larger due to either psuedo-growth or we are catching it between scans where it had grown early and is now on the decline. But if it doesn’t shrink in 3 months and my lungs continue to show improvement, things are stable enough to look at SBRT to give it a push over the edge. 

    Praise the Lord! I have been overcome with emotions. I have hope that I can beat this thing. 

  • stub1969
    stub1969 Member Posts: 978 Member
    #14
    YES!!

    I can feel those elated emotions coming through in your writing, Mark.  This is such great news--All I can say is YES!!

    Stub

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #15
    Congrats Mark, I can feel

    Congrats Mark, I can feel that excitment you have on the progress of your battle and like what others people have said, never give up!

    Take care.

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #16
    Awesome!

    Mark, this news is awesome!  What s great read to brighten up a gloomy/gray morning in Central NY.   Your elation, emotions and optimism are infectious.

    Thanks for sharing and keep on keeping on, brother.  I'm psyched for you!

    Ryan 

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member
    #17
    Mark 

    Mark 

    So happy to hear you are getting good results from your treatment. I will continue to pray for you hope your cold passes soon. This calls for balloons and streamers and a celebration treat. Cheers - God is Good. ✝️

  • paintergrl
    paintergrl Member Posts: 47
    #18
    Fantastic!!!

    Fantastic!!!

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    #19
    That’s sounds like good news.

    That’s sounds like good news.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited September 2018 #20
    Great news! 

    Great news! 

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    #21
    Even better news than your

    First post here.  Hope you took our advise and enjoyed your labor day weekend.  Continued good news for you -June

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