non hodgkins lymphona

[purccy46]

my husband has stage 4 NHL. would be very interested as to how other people are dealing with there own situation. many thanks

[Hella]

Hi purccy,

Where to start? This is going to be a long post so I apologise in advance. I was diagnosed 9 years ago with NHL B cell follicular indolent stage 2. Initially I was on W&W for 3 years and in that time I did an awful lot of reading but did not implement hardly any of it. I thought I would be fine for a long time. In 2012 I have R-CHOP 8 sessions and then 2 further years of Rituximab. I only achieved a partial remission of 35% tumour size reduction so I then started looking at my diet and supplements along with Low Dose Naltrexone - LDN. I went 80% organic and would not eat processed food. I fitted a water filter for my drinking water. I take many supplements one of those being Curcumin 95% standardised. Currently 3 grams a day but have taken between 1-6. I watched all of the TTAC videos by Ty Bollinger, free online and took info from them that I felt resonated with me. I also joined social media about 2 and half years ago as there are NHL groups and you find lots of valuable info in them. In March 2016 I started taking LDN. The prescribing doctor actually had NHL himself and he had been taking LDN for 17 years and had not had a single relapse. LDN is taken as an immune modulator. My doctor was the first person to use it in the UK. The only thing I can tell you is that in March this year I had an ultrasound and tumours present in 2015 were no longer visible. I know that this can be the nature of NHL that it waxes and wanes but 8 sessions of chemo and 2 years of Rituximab did not do this for me so I'm taking this as a positive. LDN needs to be taken for life. I'm not sure which country you are in but there is lots of info out there which I'm sure will be of use to you. I also read up about taking 'oil' but have not gone down that route. Hey never say never is my motto. Good luck

[Sps82 in reply to Hella]

Hi what is LDN? My mum has been diagnosed with stage 3 nodal MZL and she takes curcurmin as well as egcg- found in green tea.

[Hella in reply to Sps82]

LDN is Low Dose Naltrexone. In a low dose it is used as an immune modulator. Google Dr Bihari and LDN. St Georges' hospital in London are undergoing research into it's use with cancers.

[Josie2rulrs in reply to Hella]

Canyou please tell me what supplements you take?

I take some but feel that I have no guidance in it....most nutritionists don't believe in it.

I am LGFL , stage 1 grade 1, had lump removed been on W&W since 2015....feeling great.

[Hella in reply to Josie2rulrs]

Hi Josie2rulrs,

like you I have had no guidance but I have read and researched supplements that I have been interested in taking and from there I have made decisions as to what I will take. I have seen a nutritionist who was also helpful to me regarding what supplements I was lacking in. I am not medically trained and I would not be able to guide you or anyone else as to what they should take or consider taking. I will say that on my last visit to my oncologist his advice to all his patients was that they should take Vit D3 plus Vit K2. I was already taking both of these and he was pleased with this.

[BLP1211 in reply to Hella]

Great. What is LDN?

[Hella in reply to BLP1211]

Low Dose Naltrexone

[wmay13241]

Please state which of the 63 kinds of NHL your husband has - treatment varies widely among NHL types.

[Onedayatatime2]

Hi Purccy46, my husband was diagnosed June 2017 with stage 4, NHL Tcell Alk positive. He initially had 5 out of 6 CHOEP and morning of 6 and final round had a seizure in oncology infusion room. Fractured his shoulder during the event and subsequently doctors found Lymphoma had metastasized to the meneges. He started 5 day monthly cyterabine and etopiside infusions for three rounds and scans showed remission in late November last year. He had previously met with bone marrow doctors and was all set to go forward end of December and he got septic and spent time in ICU. After a few weeks he was better we moved to the city closer to BMT team and he came down with Flu A and horrible headache. Treated the flu and did spinal tap and found abnormal cells in CSF and high flow of fluid. Began weekly intrathecal methotrexate injections for 8 weeks. During those 8 weeks he fell and had to have total hip replacement and a few weeks later came down with Shingles. In March. scans showed recurrence of the cancer we were told the chemo route had been used up and doctors suggested using Opdivo. He’s been every other week for last seven months and happy to say last scans in May showed no evidence of disease. He had a setback in June with Crohn’s issue but recovered fairly well. He is staying on Opdivo until he’s strong enough to go to transplant which we hope is in the next couple of months.

I will be very honest that this is a marathon or journey, no quick fixes and if you have any suspicion that something isn’t quite right call your medical team or go to the ER. Don’t wait...I’ve almost lost my best friend and husband of 20 years a few times in the last 16 months and we have to fight when they get tired. And they will get tired. Read, study, ask questions. If it aggravates your care team, keep asking or find a new one...it’s not just our spouses illness, it’s ours too. Take time for yourself and ask for help.

Praying for a cure because cancer affects us all on so many levels.

[Shar0n Volunteer]

Thanks to Purccy46 and to Hella and Onedayatatime2 for your comprehensive answers - very informative!

[Maltipoo]

Thank you everyone for educating me. My thoughts and prayers are with all of you. To Onedayatatime2, I am sorry for all that you and your husband are going through. I don't want to be a one note Sam, but when I see that you husband had a Crohn's issue I was wondering if he has eliminated gluten from his diet?

God bless you both.

[Onedayatatime2 in reply to Maltipoo]

Hi Maltipoo, no gluten hasn’t been removed completely from his diet. His Crohn’s has been in remission for 17 years until the issue a couple of months ago and his care team is fairly confident it was a perfect storm of steroid taper along with blood thinner and anti inflammatory medication from the total hip replacement. His Crohn’s has actually been even better through the various chemo cycles.

Thank you for the question.

[Maltipoo in reply to Onedayatatime2]

Thank you Onedayatatime2. It seems like a number of us who have lymphoma are also suffering from other autoimmune conditions. I wonder if that is why our immune system was not able to fight off the cancer cells because our immune system is too busy and exhausted fighting the autoimmune disease. A number of the books on autoimmunity say to eliminate gluten (wheat), dairy, and sugar from the diet. I wonder if we should be doing that to help fight off the lymphoma so it will not return. I think I will write a post asking if others have autoimmune conditions and if they are going gluten free.

God bless you and your husband.

[shansen-oldenberg in reply to Maltipoo]

I am new to this site; was diagnosed with Rectal MALT Lymphoma in December 2017. I have been researching diet for many years due to having Hashimotos and other health problems for the past 20 years. Sugar, dairy and gluten help spread cancer and autoimmune diseases, especially here in the US due to how our food and animals are grown. I’ve eliminated all 3 since December and have seen my numbers decrease, especially my B-Cell antibodies...now in a normal range for my body to fight off the bad cells. I have also been going through intense FAR Infrared Sauna and Iodine foot baths, detox program with my Naturalpath and supplement regime to help rebuild my immune system. Baby steps are key but can make a large impact in overall health and how you feel.