Living with nhl and living in fear

[Imaginenocancer]

Living with nhl single B cell non Hodgkin lymphoma is living in a perpetual state of fear! Would like relatable exchange of words..already did chemo/plus the maintenance rounds of rituxamib! Feel as though I’m existing on a waiting line as I’ve been advised it’s indolent and most certainly will rear it’s ugly sneaky head again! Doing a vitamin d3 2000 iu daily to stay healthy as per an Ilyad study at Emory ..no connective support locally so reaching out here 💚🙏

[Calipewings_2016]

Hello. I have Nodal Marginal Zone NHL. I've did 6 mos of R&B Dec 2016 and have been in remission since. I'm waiting to have a CT scheduled as I'm now feeling lymph nodes swollen again in my neck. I'm hoping it's nothing but I noticed them there about a month ago.

[Calipewings_2016 in reply to Calipewings_2016]

Also there are some great support group on Facebook.

[bhaktadas]

I was told 4 months ago that I have B cell lymphoma in my stomach. I don't have any symptoms or any problem at all. I am just taking good nutrition, lots of Vitamin C, D, mushroom powders, and other immune system builders.

[Hella]

Snap me too. I have managed to not let it take over or rule my life. Luckily for me I'm not a worrier so it has been easier to do that than I imagine for some people. I was diagnosed in 2009. Did W&W for 3 years then had 8 sessions of R-CHOP plus 2 further years of Rituximab. I only had a partial response to the treatment and that spurned me on to look at what I could do to help myself. I was taking 5000 iu D3 daily but my level was still low (along with K2 MK7 to make sure the Vit D goes to my bones and not to my soft tissue) My oncologist stated that I could take up to 10000iu daily and that's what I did for at least 8 months last year. My Vit D level is now 120 (50-200). I changed my diet to organic although I have now let that slip. In 2016 I started to take Low Dose Naltrexone and an immune modulator. My oncologist now says I am in remission. I believe that there are things we can do to help ourselves keep well for longer. Diet, exercise, meditation, supplements. I truly wish I had started doing these things when I was diagnosed and not waited until after treatment.

[bhaktadas in reply to Hella]

Good for you! I have not taken any treatment at all. Only diet, nutritional supplements, walking about 50 Km each week, etc. I eat only a little bit of carbs, lots of green vegetables, olive oil, coconut oil, one plate of fresh fruit and have reduced my dairy by about 80% from that it has been normally. So far, I have no symptoms.

[Imaginenocancer]

I’m doing 2000 iu of vitamin d3 according to what they’re doing w the ilyad study trial at Emory in Atlanta. As I’d already had the 6 of 8 rchop and 2 years of rituxamib I wasn’t eligible for the trials but they suggested taking the d3 daily. Every new experience in health or blood level change freaks me out and I think....”it’s back” I hate it!

[pollyg2016 in reply to Imaginenocancer]

I'm so sorry for your worry and concern. My partner is the same. Finally, he's getting that some vitamins can work alongside the treatment he's getting. This forum has helped me so much as a person with a partner with Mantel Cell Lymphoma. Please continue to ask any question you need, there is always someone on here who will help you and try to put your mind at east.

[Maltipoo]

I am sorry for your worry and fear. Let me tell you how I have been dealing with this sword of Damocles that has been hanging over me for almost 5 years.

1) I always went to church once a week so I increased it to 6 days a week. It has given me great comfort and it has helped me in body, mind, and spirit.

2) I was diagnosed with Mantle Cell Lymphoma for which there is no cure. Five to ten percent of patients can have long term remission so I have been doing everything to be one of the 5%. I have radically changed my diet by eating a whole food plant based diet, no meat, no chicken, no fish, no eggs, no diary. I eat vegetables, legumes, fruit, mushrooms. I have also gone gluten free and exercise 5 days per week. Also take vitamin d3 2000 IU.

3) Worrying will not give us an extra 5 minutes on the planet and worrying induces stress which can bring on illness. Worry robs us of happiness. I try to limit myself to worrying 2 days before my 3 months blood work.

4) When you get a chance please read the following books which I picked up at the library: "Radical Remission" by Kelly Turner, PhD, "The China Study" by T Colin Campbell PhD, and "How Not to Die" by Dr Michael Greger.

I feel I am doing the best that I can and if it comes back I will have no regrets. We all only live a short time so please try to stop worrying because it will rob you of the remaining time.

May God heal you in body, mind and spirit and keep you safe and grant you health and happiness.

[Imaginenocancer in reply to Maltipoo]

Thank you and many blessings your way too! I wish it would go away completely and never come back but I realize all cancers do come back!

[Maltipoo in reply to Imaginenocancer]

Please read "Radical Remission" sited above. I believe we have a chance to keep the cancer from coming back. That is why I radically changed my diet and spiritual life. There are a number of patients who beat cancer. Let's pray we are two more who beat this terrible disease. Best of luck, health, happiness, and peace!

[bhaktadas in reply to Maltipoo]

You are going at it the right way. Sounds like the Supreme Lord is blessing you with very keen intelligence. Good luck.

[Maltipoo in reply to bhaktadas]

bhaktadas,

Thank you for the very kind reply. My wife would question the intelligence! I believe the Lord has directed me to read the correct books written by the intelligent ones. I think my job is to share the news and I pray it may help others. Peace, health, and happiness to you and your family!

[bhaktadas in reply to Maltipoo]

Thank you very much. We are not so foolish as to think we can stay here. Old age, disease and death are inevitable. But we certainly do our best to keep our body and minds as pure and healthy as we can. With the present age the pollution is universal and due to the profit motives of the corporations it is really hard to know what we are ingesting. Even so-called organic foods are often not organic as the label is abused to maximize profits. It seems like money has become God for all too many.

Being satisfied within ourselves and knowing that we are spirit not chemicals enables us to have peace under all circumstances.

[Maltipoo in reply to bhaktadas]

I now am listening to someone with keen intelligence! Bless you!

[bhaktadas in reply to Maltipoo]

Another thing is at least in most countries the medical people are motivated by profit and often cannot be trusted. I find that almost all oncologists know next to nothing about nutrition and natural healing. It depresses me when they tell me to eat anything I want, anytime I want it. They should know that everything we eat has an effect on our body and mind.

[Maltipoo in reply to bhaktadas]

It is amazing that they know so little about nutrition and they don't have the intellectual curiosity to learn about it. You would think that if an oncologist had some patients who were in remission longer than the average person they would ask the patients what they were eating and what lifestyle changes they made and at least pass on the information to their other patients. It shows us that we have to take our diet, exercise , and spiritual healing into our own hands and pass on the information to our friends on this forum. Nothing is guaranteed but at least I will go down fighting.

[Imaginenocancer in reply to Maltipoo]

I found that most oncologists or academics researching cancers are so far removed from the human side of illnesses and this case nhl cancers that what they gain in knowledge they lose in transfer to the patient. I’m thankful and blessed to have a wonderful family dr with whom I meet regularly to discuss nuts and bolts of my own research. However, doing your own can be exhausting and become compulsive. I was actually told by one oncologist that “I was lucky to have a ‘good’ cancer!! “ Isn’t that an oxymoron??? I’m thankful forever to those drs I’ve had though who took the time to identify this in me and for an incredibly good health care system to rely on for medical treatment. I just find it personally difficult to live with a shoe dangling over my head 🥾

[Pirate64]

I was diagnosed with indolent B cell NHL in 1991. Back then there was little hope for long term survival. After removing my spleen, it lay dormant for about 10 years.

Then it came back and I have been on a number of drugs that kept me trouble free for three years or so. When

each stopped working I went on the latest breakthrough drug. Am now on daily Ibrutinib - if it loses effectiveness- there will be something new that’s better.

Have faith and go to a Dr who is up on all the latest treatments. Teaching hospitals are your best bet.

Mine is NY Presbyterian.

[Imaginenocancer in reply to Pirate64]

Sometimes I think it’s all a giant guessing game of trials and errors! It’s an omnipresent cancer we have and we don’t get to ring the 🛎

[Imaginenocancer in reply to Pirate64]

I hear wonderful things about nyp. It gives me hope to hear your story. I keep wondering when the 5 year remission clock started?!

[StarrVannah3369]

Hi Imaginenocancer. I was diagnosed with NHL small B-Cell

(CLL/SLL aka Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma) in Feb 2017. Tests show that I've had it since 2011/2012. The only obvious symptom was the dibilitating exhaustion and (in hindsight),

the rapid loss of 45lbs in 2 1/2mo.

I just didn't have that much of an appetite. Since I needed to lose weight, my Doctor's were never concerned about it. I just figured the exhaustion and weight loss were from my then extremely stressful life situations.

Fortunately, I've been on wait&watch (aka wait&worry) since my Diagnosis with the expectation of needing Chemo in approximately 5yrs....which would be 2022. My Prognosis gave me another 20yrs. Which would've sounded reassuring if it weren't for the fact that I was only 49yrs old at the time of my Diagnosis. 69 is too young of an age to die.

Like you, my diagnosis has caused me extreme anxiety and depression that affected my sleep and further hindered my daily functioning.

I decided that I wasn't going to just "wait & worry". That I was going to do whatever I can to improve my health, my prognosis, and the quality of my life.

Counseling, Support Groups, and seeing a Psychiatrist for Anti-Depressants and anxiety meds have helped my Depression and Anxiety ALOT. It also widened my Support System so I was getting out of the house more on my good days and atleast talking to people on my bad days. Distraction helps a lot. I started volunteering for a local dog rescue. They understood that I had health issues and that there would be times that I couldn't physically participate. They were more than happy to get any help at all. When I was around those dogs, I forgot about my Diagnosis. It was a much needed escape that I benefited from, as well as, the dogs. It gave me a purpose too.

In addition, I started eating healthier, worked and succeeded at improving my sleep through setting a bedtime routine and listening to nature sounds while I slept, walking my dog near daily to the best of my ability, and doing stretches ..turned yoga at home.

Honestly, I think the biggest impact in slowing the growth of my NHL down to a crawl is the tremendous reduction in my stress. I asked my siblings to take turns taking care of our 90yr old mom with Dementia so I could focus on my recovery.

I started saying "No" a lot. Trust me, people whom we have enabled will get upset at first, but they will learn to take care of themselves or they will find help elsewhere.

I grew up going to Church but "Life" ..so I thought... prevented me from continuing to go to Church.

When I was in the Hospital, my Pastor was the first person I called. He comforted me and prayed with me. Not once did he ask me why I haven't been to Church in over 20yrs. Now that I am better, I take my mom to Church ..on average every 2nd or 3rd Sunday... depending on how I feel. My faith comforts me and I get to spend quality time with my mom without getting totally worn out.

The Point is:

Do Something...anything that could improve your health and your quailty of life. Nutrition, adequate rest, and stress reduction have been proven to be beneficial....amongst others.

Find what you enjoy and can do on a regular basis.

I found that doing SOMETHING made me stronger... physically and emotionally. I was no longer a victim. I was a fighter....a SURVIVOR!

Be Wishes!

[Imaginenocancer]

Thank you so much ! I too have made major lifestyle changes first being reducing/removing stress from my daily diet. After chemo I too started daily yoga, albeit through one health channel on satellite and have learned that huge word: no! The kids are still transitioning to that!!! I just don’t do well having a giant shoe hanging over my head, which is what this disease (nhl single B cell marginal zone lymphoma) does to me. I’ve been fortunate to have a great health care system but as I’m aware, sadly, I’m just one of many battling cancer. I think the difference which upsets me is that ours doesn’t ever really go away but lies in waiting. It’s in our blood just waiting for a vulnerability to start up again. Hence, even with treatment to beat it back, you never get to ring that bell and say : I’m cancer free!!!! We’re living with cancer and no one seems to understand how distressing those words can be!!🌈

[Runnerxlch]

I’m sorry to hear that your living in fear. I was diagnosed with follicular lymphoma I 2007. Curently I’m just being monitored for my white blood cell count. I have not started any treatment. My twin sister has CLL and is receiving treatment. My dad has esophageal cancer he received Chemo and radiation and the tumor disappeared but came back in only 4 months. We all realize that we cant change our situations, and it is what it is. We are all just staying positive, and we feel that stress only makes it worst. Try to enjoy life and stay positive. Stress is not good and worrying just makes you feel worse. I’m sorry if I over stepped. If I did I apologize.

[Hidden]

Yes. It can be.

To be honest I felt more guilt for letting my family down. Especially my father, who has been through enough. It was gut wrenching telling him but he was very understanding and supportive it broke my heart.

I have adapted, naturally over time.

The panic of radical experimentation has dissipated while I live a little and embrace some peace and enjoy some times, not necessarily through eating junk but doing what makes me happy outside self experiments like programming, painting, some travel, swimming with my son, family meals.

Its been over a year since my diagnoses of stage 4a. On last visit to oncologist there seems no sign of growth and bloods still very good. I haven't done any mainstream therapy in that time.

The oncologist was aghast when he asked me 'you don't look very happy with what I've said' after talking at me on first introduction and going on about 3 things I can do: b&r or b&o.,and my first reaction to all that was 'well... Yeah... I'm not happy with what you've offered me' before having a chance to assume he actually maybe more integrative. No mention of iv vitamin c. No mention of chemo testing. No mention of diet. No mention of my pre-existing gilberts syndrome or previous surgery, or IBS etc, or existing patient support group and impartial dialogue. Just straight in there with 'here, chemo, 3 variations'

So I chose to delay it. Meanwhile I have done every other diet I could sustain then moved on when seemed to feel worse but saw no gains or suffered too much.

Fear has gone. Now its just a rhythm. Life will be what will be but day to day is a balance and new purpose. The difficult days are due to lack of sleep or ibs, or my own poor habit of arguing against an bad diet regimen someone is following blindly without knowing the risks.

[Doularg9]

Like maltipoo, I overhauled my diet, adopted an Alkaline approach, no friend food, lots veg and fruit, also high dose vitamin C, Immune system boosters , measure my ph regularly, this cancer does not like an Alkaline environment.. Been using beta Gluten, Green Barley Grass, Amla as part of my diet. I also use CBD !!! I was a few weeks away from chemo and then my Mantle Cell B type, stopped progressing, some lumps went down, not all .I know we are all different, however my blood count good after 18 months, new treatments are on there way ! be positive , hang in there, take stress out your life, Ive started a new job, studying again and I am 58, stay fit, stay engaged.

[bhaktadas in reply to Doularg9]

You are doing great. I forgot to mention how important ALKALINE is. I use Apple Cider Vinegar, lots of it on salads and vegetables, I take triphala which is 1/3 amla, baking soda is great too, 12 years ago when I had T Cell lymphoma I drank 100 grams of wheat grass juice every day for 2 years and did not eat anything that had a drop of sugar in it, or anything that would convert to sugar in digestion.

[Doularg in reply to bhaktadas]

I have cut out all processed foods, I use Stevia sometimes. Noted that Amla is a great anti oxidant . Super greens are key part of diet

[bhaktadas in reply to Doularg]

You can buy triphala which is 1/3 amla, and it keeps your internal disgestive system clean and healthy. I buy herbs from a great little company in Thailand called organicthailand.com. Their prices are fantastic and they ship all over the world routinely. I buy triphala capsules from them, turmeric capsules, ginger capsules and bulk, etc.

[Jean49]

If you are interested LLS.org has a service where they can match you to someone else your age/gender/diagnosis to talk to for support or just someone to talk to.

I was diagnosed with Follicular B cell NHL in 2005 and treated 5 times, but everyone is different as to recurrence. Some people don’t relapse for many years while others have shorter periods of remission. One of the hardest things for me is most have never heard of NHL so I find myself explaining it over and over again. I’m not fearful, but just try to make the best of the remission periods.

[Smarquez]

Hi, I am also found to be with Large B-Cell diffuse non Hodgkin lymphoma. I may have been through the worst. A year ago my lungs collapsed and I was rushed to the ICU where I was confined for almost a month, all bloated because of wrong diagnosis for almost six months. I had tracheotomy to assist my breathing, for more than 5 months I had no voice. Thanks God I went through it and survived. I had chemo, 9 rounds of rituximab and 15 days radiation. Now waiting for lab results for whatever treatment need further to be done. The doctors are even amazed, they see me standing, walking and alive. Fear, yes, who is not afraid? But we are all going the same way, after all. I thank God for everything. I am simply grateful for every day, I know is a bonus. Life has become more meaningful, which maybe I took for granted for many years. Let us not allow depression to get over us. Death after all is everybody's lot and every day we wake up is a day of conversion, closer to God. Let us turn fear to faith. God loves you!

[bhaktadas in reply to Smarquez]

Feeling grateful to the Supreme Lord is the most important of all things. We are always at the mercy of God. We are all mortal, and our old age, disease and ultimate departure from the body is inevitable. To fear it is silly, as there is no escape. But we choose to live in consciousness of our self as spirit which gives life to the body, or to think "I am the body", and thus live in constant fear.

[Saintgeorge]

Hi, I have just finished rchop 6 lots plus 2 rituximab. Last one Feb 19. Feeling positive. If you would like to stay in touch please reply. Allan