Just Diagnosed Advanced Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)
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Hi DJ,
hope you’re feeling better. To answer your questions…I was diagnosed with sarcoidosis with my Nlphl. It’s in my lungs. I have neuropathy in my feet from chemo. I have permanent numbness in my toes. My hair grew back thinner than it was. I hate it. I gained weight after I had my thyroid removed due to secondary cancer. It’s wonderful that so many people responded to your thread. I posted here when I went through chemo and no one responded. Please know you’re not alone. If you have more questions please feel free to ask!! I’m here for you.
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To All of You, Thank you so much for your commentary and sharing!
BTW: I revisited PubMed medical literature on this topic. A German research paper (most research seems to be in Germany) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9820371/pdf/hem.2022000364.pdf. Table 2 summarizes treatment options based on stages and emphasizes the need to personalize each treatment. Just sharing this to back up all you have been all saying already. Nothing really new here but an excellent summary of the tools available to our clinicians - some may be more in the know than others on this.
Sending a big hug to all of you!!
Deldeb
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deldb,
Germany has led the world in hematological cancers research since at least the 1980s. Some is primary research, while much of it is secondary, reviewing statistical outcomes for all known clinical approaches. Both are of great worth. The wife of a now-passed patient who had MCL (Mantle Cell NHL) for over a decade, Becky, screen name Illead, had to resort to contacting German authorities first-hand many years ago, and learned of drug combos not yet commonly employed in the US. This effort brought her husband Bill many years of wellness. She and Bill also relocated his treatment center to MD Anderson, Houston, in his last years, which also added to his longevity --she has told everyone here that fact many times over. Becky still checks her PM (Private Messengering) here at the CSN periodically (she and I are personal friends for some years now). Even tiny Hungary is a leader in lymphoma progress !
Luckily, all nations share research finding via the various journals and conferences. I find the US National Institutes of Health (NIH) as a great clearinghouse for professional studies from all over the world.
Aside: DL -- you hand in there, my dear brother !
max
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Hey Po18guy,
I will check that out as well. I am in GA, so that's not to far...lol😁. Thanks for all your information, I will be sharing it with my doctors in the next two week.
Hope u have a wonderful day on Easter.
Doris (DJ)
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Hello again Mabakhrts,
Thanks for sharing; some of the things you shared has been my questions to my doctors. I have two doctors, one at the VA and the other one at Piedmont hospital; I am hoping between the two I might get cured. I too gain weight and having stuff show up on my lungs and now my thyroid, my stomach has what they call Mesenteric. Which is mostly in kids and teenager's, so it seem this is a monsters' cancer; well the Chemo cocktails. It leaves us with so many long term side effects, and my doctors looks at me in disbelief I was beginning to think I was crazy until I found this site and started to read all of you all stories.
If you don't mind me asking, what state are you living? I think TX, right?
I am glad so many people's are still checking this site, it went silent for a long time; so I thought, well I am glad I was wrong. Now I can have hope again being that more information are shared.
Well, this might sound crazy; but hearing your stories are really helping me get through each day!
Hope you have a great Easter Day... I am going to watch movies all day!
Doris (DJ)
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Hi Doris,
I live in pa. I have nodules on my lungs. Sarcoidosis. I’ve had numerous lung biopsies. Everytime they change. I hate it. The hardest part for me was having a new normal. So what does your dr say? What’s the game plan? Are you getting any type of treatment now? I’m sorry you’re going through this. I hope you have family/friends that are supportive. It’s a rough road. Happy Easter to you! Btw thank you for your sacrifice and service. 🇺🇸🇺🇸
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Both facilities (MD Anderson and Moffitt) are National Cancer Institute designted comprehenisve cancer centers - which are the best of the best. Had I not gone to such a facility, I would never have made it past 2009 at the latest. Some years back, I attended a seminar in Tampa in which Moffitt hematologist Lubomir Sokol spoke. He is absolutely brilliant. The drive, the hassle, the cost - all of it absolutely worth it. If you encounter some resistance locally, never be afraid to risk offending your doctor! It is your life we are speaking of here!
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Hey, you right... I will look into it.
DJ
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Well Mabakrts,
They not saying much; other than the nodules are to small. Tomorrow the 10 Apr I will see my outside Dr. and I am going to share some of the things I have learned from you all. I don't have good friends that know how to support me; and I think it's because I was the strong one in every situation and they always watch me bounds back up. Now, I am not bounding back up and they are keeping their distance....crazy.
Even my family think I am going to just bounds up, so I go out and talk with strangers and pray a lot! I am hoping for the Dr. tomorrow tell me something new, if not I am going to start call outside of GA.
I'll let you know after tomorrow. I go to the VA on the 18th Apr, so I will see what they talking about. No one can treat me until they find out if it back or not!
Just found out I have Granulomatous disease, didn't have it before; but I do have IBS and other stuff. But, it's kool; I am going to ride this horse out.😎
DJ
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Good morning Dj
wow the hits keep coming. It’s a domino effect. I hope you can get some answers soon. The unknown is the worst. Sorry about your friends. That’s a tough one. Consider me a friend ♥️ I’ll be your long distance ride or die. 🤣hope you have a good day today!
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Hey Mabakhrts,
Yea they are weak military people's, but at least I know now.... Right!! Yea we can be friends lol, ride or die...😂😆.
The outside Dr. said yesterday that everything looks stable and good, but I asked some crazy questions about the CT, so he had to go back and ask the CT Dr. waiting on that answer. He also said the autoimmune problems are causing me to feel like crape all the time, but I don't believe him; I think he just don't know why!!!
Tomorrow I go to the VA Thyroids dr. to see what they will say about the nodules on it.
So, I am just hanging in here and keep smiling....
What you been up too?😁
DJ
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Hi DJ!
how do you feel? It sounds like you need a second opinion. Do you have sarcoidosis? I hate when I get a ct to check and make sure there’s no cancer and lymph nodes are stable. There’s always new nodules on my lungs. Then he always asks me if I had TB at some point because my lungs are so chewed up. I did not. So life goes on. I think I have bursitis in my shoulder. So painful. I’m turning 59 this month 🙈 and I am a hot mess. Arthritis. Cataracts. You’re prob younger than me. Lately everyone is 🤣🤣🤣 I read an article in the past that connected IBS and lymphoma. It was some study. You mentioned you have that. I have come across so many people on TikTok that have medical issues and are retired from the military. They complain about the VA healthcare. Saying it’s not good. I don’t think veterans get the appreciation you all deserve. It’s not right. I had my thyroid removed at moffitt center in Florida. My son lives outside of Tampa. I stayed with him during that time. Oh. What’s mesenteric stomach? I’ve never heard of that before. I hope you’re having a good day today. Talk to you soon
Lorraine
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All, I am writing to share something I did before, during, and after my NLPHL treatment. This is NOT medical advice - just my personal beliefs and experience.
Besides my NLPHL diagnosis, I am otherwise healthy and not on any medications. In short, I gradually started following a very low-carb diet (<50 gr of total carbs) with quality meats, fish, fats, eggs, and green leafy veggies (nothing too radical here) & avoid all sweets, processed foods, grains/cereals, pasta, etc..
IF you are on medications and/or have medical conditions, you MUST discuss any dietary changes with your doctor/medical professional first!!
Why I started the very low-carb diet - If you had a PET scan using FDG imaging agent (a type of glucose) for your diagnosis - you know very well that the tumors "light up" because the cancer cells love sugar/glucose for energy. A diet low in sugars can NOT cure cancer, but it may slow its progression and even allow chemo treatments to be more effective. Sugar is the preferred energy of most cancer cells, while normal cells can also get energy from fats in your diet (via lipolysis). Moreover, your liver stores lots of glucose in the form of glycogen and releases it to maintain healthy blood glucose levels. In short, by eating less carbs/sugars I am trying to reduce the growth rate of the cancer cells.
Here is a link to an article from Dr. Peter Attia, MD on why most cancers need sugar for energy...
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Hey, thanks for that advice....Great!
DJ
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Hello to you, Wesley
NLPHL is pretty heavily discussed here at this site, so you will no doubt find valuable information. This very thread, in fact, has several clinical links. I have been dealing with the strain for 14 or more years now. Be aware that NLPHL is very similar to Follicular NHL, but they are not identical. Both are very indolent, and both are usually easily put into remission.
Members will be better able to address your concerns if you share your age, Staging, where you are being treated. Any quality cancer center is ordinarily able to treat NLPHL; it is usually not necessary to globe trot to one of the world's best -- IF the disease is properly diagnosed. Misdiagnosis of NLPHL is one of the most common issues surrounding it.
R-ABVD is a pretty tough regimen (and what I used for first-line). This site is excellent regarding all chemo drugs:
max
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Thank you Max and Mabakhrts for the responses!
I am 40 years old, stage 2A with lymph nodes with disease on left and right side, above the diaphragm. I am being treated at Stanford here in Palo Alto California near where I live. I believe my radiation oncologist is part of a global NLPHL group. Just finished my first infusion of ABVD with Rituximab, so still new to it all. I was told I will have 3-4 cycles total depending on the response to the first two cycles, then radiation (3 weeks, 17 sessions).
I had some rash during the Rituximab infusion so it took a very long time to get through the first infusions, 11 hours. Since I have done pretty good for side effects, flushed in neck and face, some fatigue, low back pain. some tingling in my fingers. that's about it.
I am nervous that the side effects will get worse with time/ more infusions. I have also had a difficult time figure out what I can eat with a suppressed immune system, they didn't really prepare me for the low-microbial diet.
Wesley
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