Likely.....

13

Comments

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #42

    Good luck Max, glad to hear you tolerated the first round of Rituxan!

  • po18guy
    po18guy Member Posts: 1,507 Member
    #43

    How's everything going?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #44
    https://csn.cancer.org/discussion/comment/1700629#Comment_1700629

    Po and all,

    I've been well, thank you. I haven't written because not much is new. I finish #4 of the 4 Rituxans next Monday, and then a PET about a week thereafter, so three or so weeks before the Hematologist and I have a full assessment of how it is working and how to move forward.

  • PBL
    PBL Member Posts: 366 Member
    #45

    Fingers crossed, Max!

    Any improvement on the fatigue front yet?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #46
    https://csn.cancer.org/discussion/comment/1700642#Comment_1700642

    Actually, I do seem to have a bit more energy, and am sleeping fewer hours most days. At first I thought it was perhaps psychosomatic, but now I don't think so.

  • PBL
    PBL Member Posts: 366 Member
    #47

    That seems somewhat encouraging! Do keep us posted on your progress.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #48

    Max,

    I have not been on lately. Sorry to here of your new situation. Praying all goes well.

    I get checked again in May will be 3 year mark since stem cell.

    Had a new granddaughter in September so that is out focus now.

    Sandy Ray

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #49

    Horrible weather here last few days. I'm horribly weak, got up at 3:15 PM yesterday. Sleeping around 18 hr/day. I have PET on 16th, and will advise.

  • illead
    illead Member Posts: 884 Member
    #50

    I am so sorry Max, my thoughts and prayers are with you of course and hoping that there is a reasonable answer to how are you feeling. I know this must be a big worry for you and your family. Please know I care about you very much.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #51

    Max,

    You are in my thoughts and prayers. I don’t know what else to say but to let you know what a blessing you are to have on this forum. Praying for better days ahead for you.

    Sandy

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #52

    Hang in there Max. Fatigue is an awful thing but it will pass. I sometimes get very fatigued but can’t sleep. 4-5 hours seem to be my max. Fortunately my fatigue is chronic so I have good days too. Thinking of you and wishing you well. Pass along your secret to sleeping!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #53

    I came across this today and I know that it will be useful for the many out there with Follicular. My onc and I are more-or-less viewing my NLPHL as Follicular NHL.

    As I said, I get a the PET on 16th, and will probably have the results that night or by the next day.

    https://www.hematologyandoncology.net/supplements/management-of-relapsedrefractory-follicular-lymphoma/

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #54

    Max mine transformed from NLPHL to T cell rich B cell Lymphoma of course more aggressive so the ONC at MDA are telling me they are just treating me for the B cell. I am interested in why your ONC is treating it as follicular. I am definitely no authority on any of it. I get my next scan which will be a CT in May which will be 3 years from the date of my Autologous Stem Cell transplant.

    I know you are having it rough so no need to respond. Prayers for you and awaiting your results.

    Sandy

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #55
    https://csn.cancer.org/discussion/comment/1701462#Comment_1701462

    Sandy,

    NLPHL, when it reoccurs, usually does either one of two typical things: Remains NLPHL, or transforms into Diffuse Large-B, which as you note, is much more aggressive, but in most cases still quite controllable. Much less often, it can also become CLL. Mine simply has not changed from NLPHL. Your doctor is quite right (if I may be so arrogant as to agree) to treat you now as Diffuse Large B. What NPLHL never does is become indolent again after becoming a more aggressive (= 'high grade') disease. Because of the current movement away from regarding NLPHL as a HL, and because it is more like follicular NHL than any other known lymphoma, the reasoning is to treat it as akin to follicular. This has been an increasing line of thought for at least a decade now.

    The trick is to keep watching NLPHL, because it can make the change to Diffuse B at really any time. You are lucky in a sense in that at least your doctor knows yours has transitioned and is treating it for what it now is.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #56

    Results are already back, four hours after the PET...

    Significant reduction in all tumors, by an average of I would say 60%. SUVs ALL dropped by around 70%. I meet my beloved Hematologist later this week to map the future. I give thanks to all well-wishers and to God.


    max

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #57

    Praise the Lord an answer to prayer!

  • illead
    illead Member Posts: 884 Member
    #58

    What a relief, the best news ever.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #59

    For those of you who are familiar with it, the radiologist rated my PET "Deauville Score" as "2". Deauville is a summation rating of SUVs, as I understand it.

  • po18guy
    po18guy Member Posts: 1,507 Member
    #60

    So be it!

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #61

    Good news. I know we all prefer 1 but a 2 can sometimes go to a 1 after a few months. At least mine did.

    Praying you get some energy back and feeling better.

    Sandy

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