hello,
l have literally just been diagnosed with SLL
Feeling shocked, anxious and not sure how l am going to tell my family…..all the usual
My question is can diet help? Taking the normal advice on a healthy living and lifestyle as a given .
Can supplements help?
Is there any evidence?
Having a full body CT this morning but have no symptoms ( apart from loads of swollen glands in both sides of my neck). So assuming l will be on watch and wait.
Many thanks
Hi Northseaswimmer and welcome to our community!
I was diagnosed with Stage 4 SLL over 15 years ago, though my specialist officially diagnosed me with CLL/SLL, as CLL and SLL have been classified as the same blood cancer since 1994. It's just that the CLL/SLL cells preferentially accumulate in the blood or nodes respectively. Treatment, if ever needed, is the same. See: healthunlocked.com/cllsuppo... I hope you find it encouraging to know that after my first treatment 5 years ago, my nodes, spleen and blood counts are better now than they were several years before my diagnosis, other than my platelet counts, which are still adequate.
With respect to your question, it's one most of us ask, but interestingly, most of us also omit the one lifestyle change for which there is not only the greatest evidence, but the evidence for its effectiveness is both broadening and increasing.
See healthunlocked.com/cllsuppo... and the referenced posts therein.
So keep swimming in the North Sea or maintain or improve your fitness through other means and look forward, with the help you'll find through this community, of living a normal life expectancy.
Neil
Neil, thank you so so much for this response, it is so appreciated!!
I will definitely look at all the information you suggest, and big thanks for taking the time to respond 🙏
Louise
Hi, it’s a worrying time and feels like you have the biggest secret that you’re not sure who to share it with and how.
I was diagnosed with CLL 8 years ago, I was on active monitoring for 7 years and started v effective treatment last year. I’m now so much better and there are fantastic new combinations of drugs that are very effective. I’m 63, still very active and looking forward to a good future.
I did speak with a nutritionist, their advice was to continue on my healthy balanced diet.
You’ve made a good start finding this remarkable supportive and knowledgeable community. I wish you all the very best.
Thank you so much Smiley60 for your response.
So very much appreciate it 🙏
Louise
Welcome to our community but I am sorry you are dealing with a “diagnosis”. It takes awhile to adjust to your new normal and it’s always a shock. We are a great community to share your 2 am thoughts with.
Exercise is good. It is unlikely to change the progression of the SLL but it helps in so many other ways. You feel better physically and emotionally, which is a huge benefit.
Eating a healthy diet (Mediterranean is often recommended) but Keto if you are also dealing with diabetes.
Supplements - you’ll want to check with your SLL/CLL specialist for each supplement your are considering.
Vitamin D is a good thing to have checked. People with this diagnosis seem to fare better if their Vitamin D levels are not low.
Skin care is essential. Make friends with a dermatologist and see them regularly.
And let your specialist worry for you if you can. There will likely be times you feel anxiety. That’s pretty normal. But hopefully your anxiety will be well managed by your swimming and other active adventures!
Thank you so much for taking the time to respond, so very helpful.
Can l ask why the skin especially? And Dermatologist? Is this because if increase risk of an infection?
Thank you again 🙏
Because CLL is well described as a 'cancer of the immune system', infection prevention and management is critical to living long and well with CLL. Our skin is our largest organ and has a primary role of keeping pathogens out. CLL increases our risk of skin cancers up to 8 fold, so having an annual skin cancer check is a good investment (but sadly not supported by the NHS). Many of us tend to react more severely to insect bites. If we scratch the wheals, they are likely to become infected and cellulitis can develop, and so on.
There's more on our immune system here: healthunlocked.com/cllsuppo...
Neil
Big thanks again for this information and advice, very much appreciated Neil
Get vaccinated against shingles (Shingrix) and pneumonia. Drink green tea and eat stuff with curcumin in it, but not at the same time. If you drink, stick to red wine mostly. This plan has helped me a lot. I wrote more on my profile. If you feel sick get help quickly. You can do this!
Thank you for your response so appreciated, what a supportive community this is, so very grateful 🙏 l will look at your profile 👍
How to tell family?There are many stories on HU about this, and there's no one answer.
Most common wisdom is to pause while you process this strange new status of, in general, this previously unknown thing:
a non-urgent cancer
Telling others leads to their reactions and a whole lot of energy comforting, reassuring, and counselling them.. may be easier once you have spent time with this diagnosis and reframed the way things (your life) are going to be.. your adjustments..
You may want family more careful to avoid sharing germs, but no changes to hugs - and likely don't want a fearful reaction and endless "how are you feeling?" questions.
And there maybe relations or friends best kept entirely out of the loop. Somehow.
NB. Strange but true: a cancer diagnosis revealed can lose one some friends.. I know, right?
Odd reactions one doesn't expect do occur.
Here is an excellent community that has knowledge technical and practical, and where one sometimes needs a safe place to vent and be heard.
🙏
Truly grateful 🙏
Having a little weep …
So helpful, your words are wise and comforting.
So thankful
Yes to a few tears..
Well that's another reason to pause, maybe, so much depends on the nature of family relationships/culture, but shedding some tears on one's own terms, variously of mourning, of fear, of confusion and concern, grappling with complicated feelings, getting your new bearings from new knowledge of this unwelcome club membership - all can be better before calmer, wiser sharing - if or as and when - with the most important among our family..
We benefit today from very many new (last 20 years) and advanced targeted treatments and, as Neil says, likely normal longevity.. a few adjustments are wise to reduce infection risks, to see your GP codes you correctly as cev (clinically vulnerable due to immune system cancer / permanent immune dysfunction, and to get vaccines appropriate to diagnosis.
🙏
Thanks again…⭐️
I totally agree with your restraint in telling certain people about the diagnosis … I was diagnosed 5 1/2 years ago. On treatment (oral… Calquence) almost 1 year now… doing much better. I have only mentioned the diagnosis to a few carefully chosen friends and family … for exactly the reasons you stated. I don’t want to be constantly asked ( and reminded) about my diagnosis and some people I’m certain would give me totally inappropriate comments and just make me feel worse. I’ve been orally belittled for avoiding discussing with a few certain people esp one very close who I feel emotionally cannot handle knowing and I would wind up comforting them ….
Answer is… it’s my call who to tell and not tell. I have good reasons for either avoidance or disclosure… I will do what is most comfortable for me. Took me 5 years to be so firm about it but it’s what’s best for me.
Thank you for sharing your experience, really helpful 🙏
Sorry you've got this diagnosis . . . but, this is a condition where people mostly die with it - not from it - quoting the specialist who diagnosed me getting on for eleven years ago (I'm still on active monitoring/watch & wait) and treatments, if you do need them later, are improving all the time - with ever greater range and precision.
Healthy eating, moderate exercise (you may be already doing more - if so, keep at it), get all your jabs up to date and keep them up to date and - stay calm - yes, I do know that's easier said than done. You have plenty of time to make yourself knowledgeable about this condition. Only tell those who need to know now - remember that cats can't be stuffed back in bags once they are out. Again, there's plenty of time to add to your select group if and when you choose.
Be good to yourself
So kind and helpful …big thanks for your advice , 🙏
Please check my bio, posts and comments. I have written extensively about things that might be of interest to you.
Hi
Everything said so far is spot on!
I have nothing more that hasn't already been said.
God bless you and best of luck
skipro
I was in your shoes 6 months ago when the doctor told me I had SLL. I couldn’t believe what he was saying. All I could think was that that can’t be because cancer doesn’t run in my family. He said not to worry that I have the easiest one to treat and that it isn’t a death sentence. Then he looked me in the eye and said “you’re going to be ok”. That has stuck with me because I am ok. My symptoms started immediately and after a pet scan, my doctor started me on Calquence. Long story short, after 6 months on it, I had another pet scan and my doctor told me that I’m already in remission. I feel back to my old self. Keep up a healthy lifestyle with exercise and be sure to discuss with your doctor about taking supplements. I have always taken them, probably some I don’t need. I didn’t have a problem telling my family, but I couldn’t tell friends. That changed over time as I started feeling myself again. I went through a lot of emotions at first and was put on anxiety medication for a short time which helped tremendously. I will be 77 next month and feel wonderful and so grateful for the medication I’m on and for this community. I’ll be 🙏🏻 for you as I do for everyone here. Jan
Welcome to this informative and supportive group. I am also an SLLer and have had one treatment so far with Acalabrutinib/Calquence. I was treateated for 4 years and 10 months and am in partial remission and holding. You have received a lot of good input already - and I would second the motion to be cautious about sharing your diagnosis until you educate yourself on the disease. We often don't look "sick" or need treatment immediately and folks don't really understand that type of cancer.
I didn't understand this cancer when I received my diagnosis - had never heard of it. A great source of current, accurate, medically curated information is CLLSociety.org There are tabs of info for newly diagnosed folks, and almost every other aspect of this disease.
Some of us never need treatment, and others don't need treatment for years after diagnosis - but we are all different (I had 22 months in Watch & Wait before needing treatment).
Educating myself upfront before I needed treatment - helped to contain my anxiety. But don't just Google - some of that info is very old and has outdated treatments and life expectency - use trusted sources like this site and CLL Society.
Once you are more educated on this disease - then you have accurate info to share with the chosen few you want to tell. If you have any symptoms like fatigue which may impact your work - then you might want to share with your employer. In the US - we have the Americans with Disabilities Act (ADA) to protect us from discrimination in the workplace - but they need to be informed of your condition.
Most of us do well on the ever increasing options for treatment. Adjusting to cancer diagnosis takes time and there is reason to be positive and hopeful.
All the best to you and please don't hesitate to reach out if you have questions.
Thank you so much …l am learning so much about my new “normal “ which as you all rightly say is so very important…again…thank you 🙏
Hi Northseaswimmer,
I thought I'd give you what I hope is a positive message.
I was diagnosed with SLL aged 39 and in December it will be my 30 year anniversary. I was quite advanced when diagnosed so only had a few months watch and wait. I was treated in 1995/6 again in 2007 and at the moment I'm just completing 2 years treatment with rituximab and venetoclax.
Apart from when I've been neutropenic (low neutrophils) I have been swimming multiple times per week throughout this period. I think healthy eating and regular exercise are the best things you can do although I think a well maintained heated pool maybe a better option than the North Sea.
Jacques
Thank you Jacques, your thoughts are very welcomed..
..when l get my head round this “condition” l now have to live with, l will be looking into how l continue swimming in the winter months ….so cold water swimming is supposed to be very good for increasing immunity…l know the evidence is poor but that’s what we “believe to be true “ …
Thank you again 🙏
Hello Northseaswimmer
You have come to the right place. As you gain knowledge about CLL/SLL it will clam your nerves and give you hope to go forward. Blessings.
So so true.
Again big thanks, ⭐️
l have my CT results back this morning and my first appointment with a haematologist and nurse specialist ( the news that l had “ cancer” was broken to me by an ENT consultant who didn’t know exactly what l had but said he would refer me to a specialist who did … so this group has helped me gather knowledge and understanding so l can go into my consultation today confidently asking informed questions !
Thank you all for your time and compassion ❤️
nutritional support/supplements for CLL
Vitamins/supplements for cll?
L-lysine Supplements 
Vitamin C injections and supplements
Is a Keto diet helpful?
