Round III

Based on a chest CT this week, I likely have relapse of some form.   Docs working on scheduling a biopsy to confirm or rule out.

"It pays to stay current."

«134

Comments

  • illead
    illead Member Posts: 879 Member
    edited October 2020 #2
    Oh no

    I know you are hanging in there, we will be thinking of you and know you are in good hands. Please keep us updated.

    Becky and Bill Frown

  • po18guy
    po18guy Member Posts: 1,261 Member
    You know

    what I am sending heavenward for you.

  • PBL
    PBL Member Posts: 333 Member
    Very sorry

    to read your latest news, Max. I assume it must have been caught early, if it is based on a routine CT in the absence of other signs or symptoms. Will be looking for your updates, hoping for the best.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited October 2020 #5
    PBL said:

    Very sorry

    to read your latest news, Max. I assume it must have been caught early, if it is based on a routine CT in the absence of other signs or symptoms. Will be looking for your updates, hoping for the best.

    PBL

    How

    I am fortunate to be in a Lifetime Followship Clinic, and go annually for a CBC and assessment from an NP, including touch exam.   My CBC was 100% normal, and she detected nothing tactically, but heard rales (grating breathng sounds) in my lungs.   Referred to x-ray, then to a CT.   The CT was thoracic (only), and saw a fairly large node, right axillary.   So neck and pelvic area not checked, but most lymphomas begin in medial region or chest-axillary, which thhis scan covered.  Therefore, hoping Stage 1.   Now I have a matched set -- my biopsy 11 years ago was of the left axillary Wink.

    Based upon the node size and my medical history, very likely malignant.   As I said, I hope to have a biopsy scheduled by next week, will update.

    Not everyone at my Cancer Center is put in lifetime followship, only people with statistically significant chances of recurrence.  I advise it for everyone if it is available to them.

    Since the discovery is only one node, and not a cluster, I am thinking not NLPHL again, but something more like a large-B NHL.  Las Vegas always liks my numbers.

    I am 100% calm and ready to be dragged out of patient retirment and back in to the fight, if required,

    max

  • Lym999
    Lym999 Member Posts: 43 Member
    edited October 2020 #6
    Sorry to Hear

    Max,

     

    I am sorry to hear about your recurrence. I noticed you have been at this for a while now and seemed to have done plenty of research. My Lymphoma was the Diffused Large B-Cell from a chest node near my right lung. It then spread into my lung and Spleen and had a major effect on my overall breathing. It had grown so fast that it had covered nearly my whole lung along with my Bronchial tube in a matter of no time. The fact that it had been located on both sides of the Diaphyam made me stage 3 automatic, but as you probably know with Lymphoma the stage in most cases isn't a great factor.

    I will say this that R-chop cleared most of my lung in just one treatment. I still of course had to do 6 treatments in total but it was nice to be able to breathe again. It had been hard to even sneeze or yawn because it had been so bad. You sound like you are very early in the process and that is very good!

    Did they show you your Ct scan? I know mine was very visible in the lung.

     

    John

     

  • PBL
    PBL Member Posts: 333 Member
    edited October 2020 #7

    Who would have suspected you could go to such extremities for the sake of symmetry!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited October 2020 #8
    PBL said:

    Who would have suspected you could go to such extremities for the sake of symmetry!

    "Next"

    Next (if necessary) will be a matching port hole on the right, to balance the current one on the left !

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited October 2020 #9
    Lym999 said:

    Sorry to Hear

    Max,

     

    I am sorry to hear about your recurrence. I noticed you have been at this for a while now and seemed to have done plenty of research. My Lymphoma was the Diffused Large B-Cell from a chest node near my right lung. It then spread into my lung and Spleen and had a major effect on my overall breathing. It had grown so fast that it had covered nearly my whole lung along with my Bronchial tube in a matter of no time. The fact that it had been located on both sides of the Diaphyam made me stage 3 automatic, but as you probably know with Lymphoma the stage in most cases isn't a great factor.

    I will say this that R-chop cleared most of my lung in just one treatment. I still of course had to do 6 treatments in total but it was nice to be able to breathe again. It had been hard to even sneeze or yawn because it had been so bad. You sound like you are very early in the process and that is very good!

    Did they show you your Ct scan? I know mine was very visible in the lung.

     

    John

     

    CT

    Lym, I have not yet seen the CT, since it has not yet been posted to MyChart.

    I had a lot of breathing issues during chemo (which was 10years ago), but because of lung toxicity from either the Bleomycin (a drug in ABVD), or extreme stomach acid, or both.  I did not last time have known tumors in the lungs, and none have been noted over the phone to me this time.   I have about 20 % loss of lung volume from fibrosis.

    The oncology center sent me to my pulmonologist due to rales, not because of any felt node, and he then ordered a CT, after seeing my X-ray, which he regarded as suspicious.   The thought then was that perhaps I had lung cancer, because I had a node discovered a few years ago that had to be tracked two years, wbut which was judged benign.   In a way, I am much luckier to perhaps have lymphoma again than lung cancer, because the survivability of lung cancers are way less than for nearly all lymphomas.

     

  • PBL
    PBL Member Posts: 333 Member
    edited October 2020 #10
    Let's not

    get ahead of ourselves...

    Seriously, though, if it is indeed taken early in its course (BTW: When will they fit in a PET scan?), and considering the current trend toward less toxic treatment, you might just be able to do without a new port.

    Here's hoping for the best!

     

  • Lym999
    Lym999 Member Posts: 43 Member

    CT

    Lym, I have not yet seen the CT, since it has not yet been posted to MyChart.

    I had a lot of breathing issues during chemo (which was 10years ago), but because of lung toxicity from either the Bleomycin (a drug in ABVD), or extreme stomach acid, or both.  I did not last time have known tumors in the lungs, and none have been noted over the phone to me this time.   I have about 20 % loss of lung volume from fibrosis.

    The oncology center sent me to my pulmonologist due to rales, not because of any felt node, and he then ordered a CT, after seeing my X-ray, which he regarded as suspicious.   The thought then was that perhaps I had lung cancer, because I had a node discovered a few years ago that had to be tracked two years, wbut which was judged benign.   In a way, I am much luckier to perhaps have lymphoma again than lung cancer, because the survivability of lung cancers are way less than for nearly all lymphomas.

     

    Lung Cancer

    Max,

     

    I was told by two different doctors that I at first had lung cancer, only to find out it had been Lymphoma after the biopsy. I know on my Ct scan you could easily see cancer throughout my right lung. I never smoked a day in my life and had been in good physical shape up to that time. You are right about the survival rate of lung cancer compared to it being Lymphoma. My Lymphoma had grown extremely quickly throughout my right lung to the point I could hardly breathe at times. I'm hoping like you have said that if it ends up being something serious that it is Lymphoma and not lung cancer. I am wishing the best for you!

     

    John

  • Lym999
    Lym999 Member Posts: 43 Member

    "Next"

    Next (if necessary) will be a matching port hole on the right, to balance the current one on the left !

     

    Port?

    Max,

     

    Do you still have your original port still in you? I just had mine removed just 6 months after finishing my chemo. I didn't like it at all the way it felt inside me.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    PBL said:

    Let's not

    get ahead of ourselves...

    Seriously, though, if it is indeed taken early in its course (BTW: When will they fit in a PET scan?), and considering the current trend toward less toxic treatment, you might just be able to do without a new port.

    Here's hoping for the best!

     

    Correct

    You are totally correct on all points, PBL.   {{ IF }} it is just one node, radiation will likely be a viable option, with perhaps an infusion or two as adjuvant.   I have written here for years that, if an option, I would steer AWAY from SCT or other horrid therapies, at least initially.

    John, my onc wrote the order for my port removal the day he announced to my wife and I hat I had N.E.D., so it has been gone over ten years now.

  • po18guy
    po18guy Member Posts: 1,261 Member
    None of us would be here...

    ...if even one-tenth of our worries and fears came to pass. In the broad sense, worry is worse than cancer, as by itself it can ruin even the healthy. Something has carried each of us this far - occasionally through much worse than we now face. It will carry us through this as well. Everyone has faith in something. Yet, that faith must be reasonable - it must have a firm foundation. The following was engraved into a walking stick made for me by a fellow lymphoma patient:

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see."

    - Hebrews 11:1   

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    edited October 2020 #15
    Godspeed ..,

    To your full revovery Max.

  • Evarista
    Evarista Member Posts: 325 Member
    edited October 2020 #16
    Ugh...

    Here's hoping that your doctor is wrong!  But if it is indeed a relapse, wishing you a safe and speedy recovery.  And should you have the great good fortune (misfortune, more likely) to get PICC lines instead of a port, hit me up for tips on how to live with them fairly painlessly.  Best of luck going forward.

    -Evarista

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Evarista said:

    Ugh...

    Here's hoping that your doctor is wrong!  But if it is indeed a relapse, wishing you a safe and speedy recovery.  And should you have the great good fortune (misfortune, more likely) to get PICC lines instead of a port, hit me up for tips on how to live with them fairly painlessly.  Best of luck going forward.

    -Evarista

    Consult

    I met with the surgeon this morning.   He showed me the nodes -- there are more than one.

    The largest is 5.2 CM long, 2.5 CM diameter.   Looks like an uncut dill pickle....

    Excise Thursday morning.   Thank you to all....   I'm not going to write here again until Friday.

     

  • po18guy
    po18guy Member Posts: 1,261 Member
    edited October 2020 #18
    Prayers

    ascending on your behalf.

  • Rocquie
    Rocquie Member Posts: 858 Member
    Max. . .

     . . . you are in my heart.

    Rocquie

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    edited October 2020 #20
    Max

    You are in my prayers.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited October 2020 #21
    Rocquie said:

    Max. . .

     . . . you are in my heart.

    Rocquie

    Heart

    That's about the best place a person could be in this world, R