Just Diagnosed Advanced Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #62

    Wesley,

    Stanford is as good as it gets, so definitely no need to look further.

    Commonly, subsequent infusions of Rituxan have fewer side effects, and go quicker. Your doc will advise. And yes, side effects usually get worse with more applications -- just a truth of chemo. I had 6 cycles (twelve sessions), and I was pretty much a waste land by the end: serious neuropathy, lung toxicity, brain fog, extreme fatigue, black nail beds, skin issues. Hopefully your experience will be significantly easier.

    Food fetishes and even drug-induced anorexia can occur (but later clears). Chemo time is often not the time to worsen healthy-eating concerns; you have gotta maintain strength. The drugs will kill the disease. For a time, I would eat only french fries, and later, refused even that, living on Ensure and similar drink products. My wife asked my Doc (a Stanford undergrad/ UCLA MEd School grad) "What can I give him to eat?", and he answered, "Anything he will put in his mouth and swallow."

  • WesleyL
    WesleyL Member Posts: 7 Member
    #63

    Thank you for the advice and information. It’s nice to know there is a light at the end of the tunnel. Just scary at the beginning of the journey. Though it’s early, I’m grateful my appetite has been good so far.

  • djabrown68
    djabrown68 Member Posts: 16 Member
    #64

    Hello everyone,

    It's been a while since I seen anyone out here on the site. 😊 Hi Wesley, yes you are not alone....😎. I am Doris and I live in GA, trying to move back to CA where I can get better information on this nasty bug!

    I hope the best for you, and you are young, so this is a plus. Now, I ate a bake potato/with butter and chives after every treatment to replace the Potassium that the Chemo drugs sucks out of you. My nurse told me this when I started my treatments back in 2016 Sep. It worked, every time I went back for a treatment, my blood vitals was normal, and the Dr.'s were shocked...😆. I see they using Bleomycin, I'm surprise; they not suppose to use that drug anymore!! It's really a bad one! But, an not trying to scare you, it just mess me up, but I was older than you when they founded my cancer; I was 61 yrs, and had it for 7 yrs. But, I am a black female and you don't see it in us and black men don't get it! The nerve of this cancer being PICKY...😆🤣😂

    Well, I have to keep laughter. I am hoping for the best for you.

    Hey Max and Mabakhrts,

    I am so glad to see you guys on this site again, I been wondering where anyone was.... I need to ask a questions for you two: Do your PET Scans come back HOT, meaning; do they show any area's light up? And if so, is this what your Dr.'s are calling remission if the cancer not growing? I am still at the VA, and I think they are lying to me.

    Help!😁

    Doris (DJ)

  • Mabakhrts
    Mabakhrts Member Posts: 10 Member
    #65

    Hi Doris,

    I have sarcoidosis in my lungs and had to have my thyroid removed from cancer as well. So when I get my scans my lungs always come in hot and some of the lymph nodes in my neck. Then it requires further investigation. I see the oncologist every year. So far I am still cancer free. I don’t know how the word remission is used anymore. Tell me more details for your journey and where you are now. I’m assuming you have hot spots showing up. Are they concerned? I hope you’re feeling good. I’ll wait to hear from you!

  • WesleyL
    WesleyL Member Posts: 7 Member
    #66

    Hi Doris!


    Thank you for your note and kind words ! Im def gonna try this baked potato trick. I was supposed to have my second infusion this Tuesday but my white counts were too low so I have been on this shot this week daily to bring my counts up. Side effect: intense bone pain. Very crazy. But, if my white cells come up, I’m happy. now scheduled to be infused on Saturday. I’m just praying the Rituximab is easier this time with less reactions 🙏🏻

    have a great week and weekend all!


    wesley

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #67

    I find this thread interesting. However I would suggest starting a new thread on the topic. This thread is almost 9 years old and 4 pages long. Just a suggestion. My best to you all.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #68
    https://csn.cancer.org/discussion/comment/1709597#Comment_1709597

    DJ,

    PET results are rather complicated (much more so than CTs), and it is best to simply go with the radiologist's summary. In general, though, people who are cancer-free will have areas that are normally 'hotter' than others, simply because of the way their metabolism works. The liver, for example. My results stated that there was 'no suspicious or abnormal SUV levels anywhere,' despite one quite large remaining node. So, by PET protocols, no cancer.

    max

  • djabrown68
    djabrown68 Member Posts: 16 Member
    #69

    Heyyyyyy everyone,

    Well Mabakhrts, I started back in 2010 with strange issues for a health woman at 55 yrs old. Things like fever 104 for 10 days, heart racing, ace in my joints. This would went on for 5 years and no one check me for cancer. In 2015 I thought I had a heart problem, but still the VA only saw a health woman, nothing show up in my blood work. So in 2016, blood start coming out of my noise and mouth for no reason.🤮 So I asked for a STRESS TEST for a blockage maybe in my heart. That's when they saw the Lymph Nodes, but they still didn't know, so the biopsies had to go to Minneapolis, Minnesota, back in 2016 Sep. I was stage 3, but they said stage II. So they gave me the MAX, R-AVBD; 7 rounds and 6 rounds Radiations in 2017. That's when all my treatments ended! Then they said they gave me to much of both in 2018; because I started having a lot of side effects showing up.

    After I had to do early retirement in 2017 from the Air force DOD, but my PET Scans was clear up until 2019. I started having long term side effects from the Meds. Hair fell back out, rash, enlarge Liver, weight gain without eating🤣. One of the Chemo meds gave me CREST Syndrome, Lymphedema, mesenteric lymph node in abdomen. I am still HOT under my Arm pits both, in my pelvis on each side. Now I have a thyroid nodule that they are watching. I started having Hot Flashing and Night Sweats about 4 months ago.

    So, the VA said I'm stable because they not getting bigger. But I have an Autoimmune disorders that no one can say what it is, because I'm not in a chronic stage for anything they can see!! I see my second cancer Dr. and hoping for more answers.

    So, I don't have an appetite going on for 4 years, but I eat healthy to stay alive. The nutritionist said they can't help me; because I don't eat....🤣 But I have enough fat on me to stay alive... 😂.

    I got the flu now because I took the 65 and older flu shot.....but I'm looking ahead for the best and hoping for the best. I thought after servicing my Country for 32 yrs, the VA would try to send me outside to get better answers. But I keep my spirit's up by going to a Wellness gym and talking with the elderly peoples I meet and this has help a lot, and the young peoples and well.

    The Dr.'s at the VA just look at me like deer's in Headlights, I am the only woman and black person. That's me!! Always setting a records...🤣

    Well, I have to laugh. That's my story Mabakhrts. I am going to sell my house and move to Calif where my family is and try to spend some time with them before anything gets worst.

    Thanks you guys, it's always a pleasure with all of the conversations... I just love it!💖

    Oh, yes Max, my outside Dr. do CT's. Every three months and I think I'm going to tell them to move to 6 months after Dec 2023 CT.

    Hey WesleyL,

    let me know if that bake potato works for you.

    Now, I got to go work on my Flu.....🤧

    Doris

  • djabrown68
    djabrown68 Member Posts: 16 Member
    #70

    Hello Wesley,

    I was just thinking about you! How are you doing so far? Just checking in on you man!

    I hope everyone else is doing good.

    Doris (DJ)

    👍️

  • WesleyL
    WesleyL Member Posts: 7 Member
    #71

    Hi Doris,

    So kind of you to ask. I’m doing ok. Trucking through the chemo. Just finished my second cycle. I have my repeat PET scan next week . If all goes well, only one more cycle to go. Fingers crossed.

    Normal side effects from chemo. Nothing too crazy. Feel **** for a week, then feel good for a week. Then repeat.


    How are you?


    Wesley

  • djabrown68
    djabrown68 Member Posts: 16 Member
    #72

    OOOh man, I am happy for you! Just keep that positive attitude; it will get you through.

    I am doing much better, since the flu decided to let go of me. It's been a month, but I'm getting much better now. So cold here in GA, I can't wait to get back to some warm weather, looking at Palm Springs, Ca.

    I am hoping your PET come out to be clean...👍️.

    Talk soon,

    Doris

  • WesleyL
    WesleyL Member Posts: 7 Member
    #73

    Good news, my repeat PET scan showed complete remission with a deauville score of 2. I only have one more infusion and then radiation in January. Then I’m done! 🎉🎉


    Wesley

  • Mabakhrts
    Mabakhrts Member Posts: 10 Member
    #74
    https://csn.cancer.org/discussion/comment/1710923#Comment_1710923

    I am so happy for you!!! I’ll be glad when you’re completely finished with treatment and can heal. What a blessing!

  • djabrown68
    djabrown68 Member Posts: 16 Member
    #75

    Heyyyyyy Wesley,

    WOW, 😲 that is soooo GREAT!! I'm so happy so you! Loving it!!😁

    Doris

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