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

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.

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!

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.

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

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

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

Heyyyyyy Wesley,

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

Doris

good morning! I hope today finds you feeling well and optimistic. Whatever the stage …know that you’ve got this. You’re stronger than you realize. Just take things one moment at a time. I’m here if you need any support or a shoulder to vent or even cry ❤️

tah,

NLPHL has been discussed a lot here. It is essentially the HL version of NHL Follicular. It is easily put into complete remission, but has a strong tendency to relapse, often many years after complete remission. I had advance Stage 3 in 2009, which six months of R-ABVD put into full remission for about 11 years, but it recurred in 2021. It is now again in complete remission (C.R.) after two years of Rituxan maintenance. Aspirational biopsies ("needle draws") are often of little worth in diagnosing rare lymphomas; excise sample are very much preferred. Good luck, and numerous folks here have experience with this and Follicular also.

max