Lymphoma vs Sarcoid

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  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #62
    Hopefully

    I hope that we will know something by Monday. I've been doing well, but I'm starting to get more anxious especially after reading the path report. Glad I have you all to help and I know po18guy went through a lot and is an inspiration! I will keep you all updated if I hear anything today or after my appointment Monday. 

  • PBL
    PBL Member Posts: 369 Member
    edited July 2021 #63
    Hang in there

    and keep calm. Just be prepared for either possibility.

     

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #64
    Diagnosis

    I just spoke with my oncologist and he confirmed that it is Classic Hodgkin's lymphoma and I will know more on Monday! 

  • PBL
    PBL Member Posts: 369 Member
    edited July 2021 #65
    Glad to read your news

    That is - comparatively - good news, in that you will be treading on a well-known path. Classic Hodgkin's has the highest cure rate of all, so there is plenty of hope for you at the end of this tunnel.

    Have a good weekend, and keep us posted on your treatment plan when you find that out. Those who have been through the same may have some advice for you.

    PBL

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #66
    I will definitely update on

    I will definitely update on Monday afternoon after my appointment. I know that NHL and HL are treatable, but I was relieved to hear that news for sure. I appreciate all of you and I'm glad I stumbled across this site! Hope you have a great weekend!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited July 2021 #67
    cHL ("Classical HL")

    TN,

    With PBL, I must agree that cHL is comparatively good news, about as good a lymphoma diagnosis as is possible.   In nearly all cases, oncologists regard cHL as readily curable, regardless of stage, especially in patients older than 18 and younger than 50.   'Curable,' in today's parlance, means 'long-term NED,' or 'no evidence of disease'.  The word 'cured' is mostly avoided in clinical oncology today.   But, a rose by any other name....etc.

    There are 5 forms of HL of which 4 are dubbed 'classical.'  The remaining one form of HL is NLPHL, which is what I had; NLPHL is very indolent and much like follicular NHL, and like follicular is regarded as incurable, but easily controlled.    The cHLs are also the most easily-diagnosed lymphomas, in that they contain no, or extremely few, CD-20 cells.  The presence of Reed-Sternberg cells (which are absent in all NHLs) makes confirming cHL relatively easily for pathologists.  The defining attributes of NLPHL is abundant CD-20, and no Reed-Sternbergs.  In contrast, the W.H.O. now recognizes over 60 forms of non-Hodgkin's Lymphoma (NHLs); many of these are aggressive and have poorer prognosis than cHLs.

    Stage 1 or 2 cHL is usually addressed with 3 or more cycles (equals roughly 3 months of infusion appointments) of ABVD or CHOP, but in the last ten years or so, there has been a movement toward experimenting with lower-toxicity combinations.  A couple of these are AVD, B&E, etc.    Because cHL has no CD-20s, Rituxan-only maintenance is NOT an option.   Active Survellance is somemtimes used, but A/S is essentially a clinical waiting process, and is not employed toward curative effect.  Plainly stated, it will delay chemo side-effects, but will not move the patient into NED.

    Stages 3 or 4 are usually addressed with 6 cycles of  the same combinations mentioned above (six months of infusions).   As Shady mentioned a few days ago, radiation is almost never employed against the cHLs, except in the very earliest (incipient) cases of Stage 1.

    Based on what you have shared as of July 16, you are very likely looking at complete and non-relapsing NED.

    I scanned your thread, and cannot see which cancer center you have decided upon, but Vandy (I was born in Murfreesboro), Mayo, and MD Anderson are all among the best in the world.  You cannot get better than any of those for most cancers.   In the SE United States, only Duke and Emory compare in quality.  The other best centers in the US are The Cleveland Clinic, Sloan-Kettering (NYC), Johns Hopkins, Stanford, and City of Hope (Los ANgeles).

     

    max

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited July 2021 #68
    Clinics

    Great write up Max! TN - I had a Doctor friend who spoke very highly of the Sarah Cannon (aka Minnie Pearl) nonprofit cancer center with several locations across Tennessee. I am not certain but believe it may have been integrated into an organization called Tennessee Oncology. You may want to inquire with your Oncologist about that. Could be more convenient than the other out of state locations.

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #69
    Thank you!

    Thank you, Max! That helps to know all of that. I knew that there were many more types of NHL than HL. I was unaware of the type you had. I know a couple of people who had the ABVD therapy as their chemo for their Hodgkins. As for now, I'm going to stick with my oncologist here if the treatment is pretty straight forward. I appreciate the reccomenations and will keep them in mind if I choose to pursue care elsewhere. Actually, one of my best friends is a nurse at Sloan Kettering. I have heard all of the other names you have mentioned as well. Thank you for sharing your knowledge. I can research, but it's much easier hearing and learning from someone who has had a specific type and can make much more sense of it to me than me reading on the internet. After my appointment tomorrow, I will post and give an update of everything. Hope y'all have a great day!

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #70
    Onward

    So treatment should start Monday. I have to have pfts done Wednesday and a port put in Friday. I will have 2 cycles of abdv chemotherapy. then they will do a pet scan at that point. I will also see an oncologist at vandy to determine if we should continue that chemo regimen or remove one of the drugs and do some radiation. Considering things go as planned, it will be a total of 6-7 months. Also, it is stage II. Will continue to post updates! 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #71
    TNgirl111619 said:

    Onward

    So treatment should start Monday. I have to have pfts done Wednesday and a port put in Friday. I will have 2 cycles of abdv chemotherapy. then they will do a pet scan at that point. I will also see an oncologist at vandy to determine if we should continue that chemo regimen or remove one of the drugs and do some radiation. Considering things go as planned, it will be a total of 6-7 months. Also, it is stage II. Will continue to post updates! 

    Very good

    The '2 cycles' will be four infusions, or two months worth of treatment; the PET is of course to verify that the drugs are working as they should.  Adjustments can then be made, but the easiest result is for them to be working very well, and continue with the original plan.  As discussed above, ABVD is still today the Gold Standard for cHL.   

    All of the results that you have provided thus far suggest that you will move directly into NED, and have all of this behind you soon.

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #72
    Thank you Max! I trust my

    Thank you Max! I trust my doctor, but having that opinion from Vandy also gives a little extra comfort! I'm just ready to get all of this started...As Shadyguy says, "Tennessee strong!"

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #73
    Port

    Hi all! Just an update. I had my port put in early this morning. I'm pretty sore, but I'm taking my pain meds and resting. As of now, supposed to start chemo Monday morning. Will update again soon!

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #74
    just curious …

    which side did they install the port on? Did they give you a choice as to which side? Mine was on the left and my brother had one on the right side.

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    edited July 2021 #75
    ShadyGuy said:

    just curious …

    which side did they install the port on? Did they give you a choice as to which side? Mine was on the left and my brother had one on the right side.

    Port side

    They put mine on the right side. They didn't ask which side I preferred, but he did my other surgery so I just let him choose. Great well known surgeon in our area! it hurts to move my arm right now! I know it'll get better. I don't like the feeling of having something under my skin like that but I'll deal with it 

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #76
    Chemo

    Currently receiving chemo. I'm on the Bleomycin. Everything going well so far!

  • Rocquie
    Rocquie Member Posts: 869 Member
    edited July 2021 #77
    TNgirl111619 said:

    Chemo

    Currently receiving chemo. I'm on the Bleomycin. Everything going well so far!

    Chemo

    Hi Lauren,

    I have been reading your story all along. And here you are in the "chair". Your great attitude is going to take you far. A general public attitude toward chemo seems to be of some mysterious, medieval, torturous treatment. Oh no, not chemo!  I say, chemo saved my life. Now, 8-plus years later, I look back affecionately at my chemo days. I felt like an honored queen and the nurses were angels. Go ahead and let people pamper you, you will need it.

    Wishing all the best,

    Rocquie

     

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #78
    Rocquie

    Thank you, Rocquie! everyone has told me that the positive attitude is what gets you through it, and I'm trying to keep mine that way! You are right about the chemo. It is what is killing the horrible disease. Congrats to you on 8 years!! I, too, can't say enough about the nurses, physicians, front office staff etc that I've encountered through every appointment, surgery, procedure throughout this process so far. The nurse yesterday was as sweet as could be! Makes a huge difference! Thanks for following my journey. My next treatment is Monday, August 9th.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #79
    Here is hoping things are

    Here is hoping things are going well after your treatment this past Monday.

  • TNgirl111619
    TNgirl111619 Member Posts: 72 Member
    #80
    Treatment

    Thank you, ShadyGuy! I just had my 3rd treatment this morning. Going well so far and I've even had the energy to exercise again which I haven't had in the past year 1/2. One more treatment on Sept 7th, then a PET scan on the 17th and to Vanderbilt on the 21st to see where with go from here with treatments. 

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #81
    So happy to hear this

    Vandy is a great hospital system. You are in good hands at Vanderbilt!

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