Any advice on diet or supplements to aid someone with CLL? Also< heard very good things about juicing. anyone have insight, recipes welcome

[HappyEndings]

I am new to this platform. My fiancé was just diagnosed this past week... he's 58 and really active, we love to travel. If anyone has insight on traveling with CLL too --Id be super interested in how its gone. Any recommendations can't hut...

[lankisterguy Volunteer]

Hi HappyEndings,

One of the best resources for complimentary treatments, foods and juicing is this pinned post healthunlocked.com/cllsuppo... Please read all the replies, especially from AussieNeil

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When you have time please read all the Pinned Posts (in a box on this page), especially

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo.... Please see #3 and 12 c

healthunlocked.com/cllsuppo...

-

Len

[HappyEndings in reply to lankisterguy]

Wow! Thank you so much!

[AussieNeil Administrator]

When travelling with CLL, the increased risk of infection is the main concern. We build up resistance to bugs in our environment, but won't have the same degree of resistance to unknown bugs, plus we are more likely to be in close quarters with others, particularly if flying or taking other forms of public transport. That's why gastroenteritis when travelling is not an uncommon occurrence, even for healthy people. Hopefully buffet meals and salad bars are now better managed due to COVID-19 concerns, but they are best avoided, particularly if you are neutropenic: cdc.gov/coronavirus/2019-nc...

There is always a degree of immune compromise with CLL, of which neutrophil and immunoglobulin counts are a guide. That can be somewhat addressed by taking extra precautions to minimise infection risk.

With respect to juicing, here are two relevant past posts on this:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

It's common to re-evaluate our nutrition when we are diagnosed with CLL and there are generally improvements we can make, arguably by changing our diet to ensure that it provides our nutritional needs without supplements - unless dietary changes need supplementary bolstering to address a confirmed deficiency via a blood test. However, don't overlook the far greater benefits from exercise:

healthunlocked.com/cllsuppo...

Neil

[HappyEndings in reply to AussieNeil]

Neil, thank you so much for your advice! I loved all the enthusiasm of the people who contributed to the pin article on exercise. This site is such a Godsend!

[Jm954 Administrator]

Hi there and welcome to the site where I hope you'll find the support, information and friendship you need to deal with your fiancé's CLL.

Re the CLL, it's very early days for your fiancé yet and I'm sure you're both still in shock from the diagnosis. In your profile you mention diet and juicing to help him but I am not aware of any dietary methods that will slow down the progress of CLL. General wellness is important so keeping' as fit as you can, maintaining the correct weight and eating well will make sure he is as well as he can be to face whatever this throws at him.

CLL is very variable and not a one size fits all disease. That variability is driven by the CLL profile and CLL genetics and other factors that we are not aware of yet. As you are in the USA, I'm not sure if he is being seen by a general oncologist or a haematologist but if it's an oncologist then you may want to find a specialist haematologist. If you let people know your general location then I'm sure members will make recommendations if you need them. Having a specialist haematologist who is up to date can make a lot of difference to the diagnostic workup and treatment he receives which can be very important.

Lots of people lead normal lives whilst being careful about their infection risks during the watch and wait period and that (prior to the pandemic) included air travel and holidays. Vaccinations are important here and please read the Pinned Post about that.

Anyway, enough rambling, welcome again and well done for completing the profile section, it really does make a helpful difference when we are responding to queries.

I love your happy looking avatar, however, if you use a photo you would be sensible to 'lock' your posts so that they can only be viewed by this community and not the entire internet. You may not want the world to know about the CLL just yet. When you write a post, at the end there is a part that says -

"Who can see my post? Learn more" - and then the option for Anyone (the default) or Only community members. I suggest you click on Only community members to protect yourselves.

Please keep us up to date with your fiancé's situation and we wish you both all the best.

Jackie

[HappyEndings in reply to Jm954]

Jakie, wow thank you for the very warm welcome.. and all the good feels your message had! I am so grateful I stumbled upon this site--I was just frantically looking for advice studies and treatment plans... I used to be a dialysis nurse, for almost 10 years. So I have some medical background--but it is amazing what you forget when your not doing it everyday. I have been without credentials now for 6 years... but its surly all coming back to me Thank you for the advise to protect ourselves --Although, we are a very open book. Jeff and I met because of our personal drives to help kids here and abroad. Since we have build our foundation from just him traveling and helping however he could to a board of 7 chair holders helping children across the US but also in countries like Uganda, Kenya, Tanzania, 6 projects in Puerto Vallarta MX alone. Costa Rica, Nicaragua.... are just a few of my favorites. We had high hopes to visit projects in Siri Lanka this winter but covid put a stop to that. And now CLL.... It is Jeffs dream to help the forgotten children in our world. It has become my dream to help him accomplish that! This is why our Foundation is called DreamMissions... because everyone with a heart and sole dreams of doing more for others! With that said I hope this diagnosis will not take away his dream.... I worry what his quality of life will become if he cannot see his children of the world...

[Jm954 Administrator in reply to HappyEndings]

That is amazing work you are both doing and I can completely understand the want and need for you both to continue. However, infection is the single biggest cause of death in CLL patients so I think each country, and even location within the country, might have to be assessed individually and discussed with your doctor. Some of the vaccinations you should have to go to various places are 'live' vaccines and not suitable for CLL patients, even in the watch and wait phase. Some members might relate their experience of being ill and very scared in a foreign country and hospital.

We have large numbers of members who travel extensively both for work and pleasure so I hope they see your post and contribute their experiences. Of course, in the end the decision and the level of risk you find acceptable is yours and I wish you all the very best with your work.

Jackie

[HappyEndings in reply to Jm954]

Jackie,

So awesome! I am so appreciative of your reply... I completely understand, we have some major things to think about. This platform is already doing wonders for our anxiety levels! I truly am grateful for everyone who has been so open, sharing their paths and struggles along the way with us. I feel like we have a place to confide and trust in ... not everything about the internet is obnoxious and evil... without it this conversation would not be taking place! thank you again for all your supportive words!

[LeoPa]

Hi, If by juicing you mean juicing sweet fruits then don't forget that the resulting blood sugar spike will hit your liver like a train. Remove the fiber and drink the juice and you speed up absorption like crazy. If the fruits contain lots of fructose this practice will lead to fatty liver disease in the longer run and elevated triglyceride levels fairly quickly. Even more so if combined with a high carb diet. Before jumping into any kind of substantial dietary change, pls do your homework really well. There's more danger to it than meets the eye. Even green smoothies can be detrimental in large quantities. More is not always better. Stay well!

[HappyEndings in reply to LeoPa]

LeoPa, Thank you for your input... I was thinking of juicing more vegetables than fruits -- but maybe a combination of both... I read that it can be helpful to get all the nutrients in larger amounts... but I am open to any and all--from any who have had --or hadn't had success. I appreciate your insight on the rise of sugars.... good info

[zaax]

Always take Vit C & D (everyone's D is low) and Zinc

[MsLockYourPosts Passed Volunteer in reply to zaax]

Don't have your fiancé just take supplements. He should have his vitamin D and vitamin B levels checked, especially B12 and work with his doctor to get them into a healthy range if they are low. Vitamin C is questionable when our issue is increasing Lymphocytes.

Some cancer centers now have MDs of integrative (complementary) medicine who work with oncologists to develop plans for individual patients. You might want to check into that.

[HappyEndings in reply to MsLockYourPosts]

OMG! I read that ---about the concern for taking V-C if your WBC is high... Thank you for verifying this for me!I absolutely will look into the complementary medicine... we do have a hematologist already -- do you think we should also seek a oncologist? I have read a couple times now that having both is beneficial and also getting second opinions too... any thoughts?

[AussieNeil Administrator in reply to HappyEndings]

Oncologists specialise in solid tumours, whereas CLL is a blood cancer and blood cancers are less common than many solid tumours. In fact it's classified as an orphan disease in the USA and some other countries, to encourage medical research into improved treatments. In recent years there has been an incredible improvement in new, very effective, non-chemo treatments. The upshot is that in general, oncologists just can't find the time to keep up with the latest CLL research, so unless you can find an oncologist who specialises in CLL, you are likely to get suboptimal CLL management. So in general, your best specialist choice is a haematologist who specialises in blood cancers, then a haematologist/oncologist.

The CLL Society maintains three lists of recognised CLL specialists here:

cllsociety.org/toolbox/cll-...

The society also provides a free second opinion service (Expert Access) for US based CLL patients who can't find a suitable specialist.

Neil

[HappyEndings in reply to zaax]

Thank you! Due to Covid... our entire household has been on that regimen! lol

[Provence]

Hello HappyEndings,

I am sorry to be giving you my not so positive experience about travel and CLL, but maybe a warning also has some value. I used to be a very adventurous traveller and would have several exciting journeys each year. India, Thailand, South Africa, Botswana, Tasmania, Malaysia, Utah, Iran, Turkey and so on. This is how I saw myself. Then 7 years ago I was warned that I might have a cancer in my lymph nodes and that I needed a biopsy. ' Let me first go to Turkey ' I argued. And..... I came down with a bad flu. On coming back I had the biopsy and the diagnosis of CLL. I was however told that I could live my life normally and so off I went to Iran and Jordan. This time I caught a stomach bug.

Six months later I went off to Turkey again and this time fell really very ill with an allergic reaction to one of the many supplements I was taking ( because I was scared of contracting the flu again ). I was seriously ill and was almost hospitalised in a country where I could hardly communicate with doctors and nurses. I was on steroids for a month. 5 months later I travelled to England ( I live in France ) and that time I caught pneumonia. And that was then also the beginning of the CLL getting much worse. By then I had learned my lesson. I must be very very careful with travel. Nevertheless I wanted to follow an Ayurvedic treatment in India whilst I was still on Watch and Wait. The 3 months at the Ayurvedic centre went well, but the long plane journey home was a problem. It exhausted me, especially a long wait at Paris airport, and when I arrived home I caught a cold, that became a bronchitis. I was ill, unable to do anything, for 2 months.

I do still travel but cautiously now. In the car to Italy with my husband driving, taking care not to have long days driving. A short flight to Marrakech or Bristol or Amsterdam. But then a full day in bed to recover from the exhaustion of the flight and airports each way.

Last year I did something more adventurous again. We went to Georgia ( in the Caucasus ). I had arranged to stay in a guesthouse where I knew I would be well taken care of and we largely stayed there. It went well but again the journey back turned out to be very tiring and I felt 'strange', 'spacey' afterwards and of course caught a flu!

So I would advise being careful! Use all the precautions you can for not catching an infection, we are now well practised in that in this covid period. And make sure that you do not become too tired because that will lower your resistance even more

Another problem I now have with travel is that due to the CLL I have become allergic to insect bites and at the same time am like a magnet to them. This rules out any country in which there are infectious diseases transmitted by mosquitoes, and in any case it is so unpleasant to be bitten that I do not even want to go to a place where there are many mosquitoes. This is sad for me since I have for instance strong bonds with Botswana and South Africa and have very dear friends there and this mosquito allergy ( and the fatigue ) is preventing me from going to see them again.

This is probably not what you wanted to hear and I am sorry about giving this message. But do take into account that every CLL patient is different and not everyone would be as vulnerable as I have been. I hope not for your sake.

I am however enjoying the beauty that surrounds me much more, and I treasure my careful trips to mosquito free places like England and Holland or Corsica and Sardinia in spring. There is always more to enjoy in life!! And I am grateful that thanks to the treatments I am still very much alive and enjoying myself in modest ways.

Good luck and happy safe travel.

Kunderke

[HappyEndings in reply to Provence]

I truly appreciate your "not wanting to hear" LOL! Good and bad--were ready for it! anything to be a head of the game! Travel is huge to him--its really, over the past 10 years BECOME HIS LIFE! I pray we can find safe ways to protect him and let him live out his lifes purpose at the same time...

[janvog]

I agree with the suggestion of LeoPa above: Better to consume the entire fruit and entire vegetable, because they are absorbed slower and don't alter glucose rapidly and the FIBER is extremely important for the gut bioflora. Or at least you can process fruit and vegetable into a puree. The CLL Association has a service of a dietician who can call you and advice you! Exercise, especially walking is very important because muscle and circulation are necessary to manage the whole system of nutrition, digestion and therapy. By combining fruit and nuts in one puree or paste - you slow the absorption of the fruit sugar. You can add cocoa powder: You got chocolate ! I use frozen organic blueberries and organic apple sauce. It takes minutes and a pot full lasts for days of small intakes.

[HappyEndings in reply to janvog]

I like the idea of a puree -- yummy! I love all this information! Its literally a one stop shop for researchers like my self! Love it!

[HappyEndings]

Thank you for the response. I have read that with juicing, it’s the pulp that really has all the nutritional value... saying to not forget to add it back to the juice. I like your idea of doing purées with fruit and nuts...

[Blueish]

Hi Happy Endings,

My personal experience.

I have started intermittent fasting ( 19:5) over one year ago, when my ALC stood at 13.5k after going up 15% per year after year. The first month I went rather low carb, high fat , lots of olive oil , mainly vegie based, sort of Mediterranean, a bit of fish and chicken, no alcohol. Not sure if I was in ketosis or for how long. ALC dropped to 7.2k.

Felt really good about the result and for the next few months celebrated with decent amounts of red wine, a scotch here and there, more fruit, etc. ALC went up to 11.5 k quickly and stabilized there.

Then I started pushing the fasting to one meal a day, cut down on the wine but not completely, reduced the fruit a bit, got vitamin D, ALC tested this month at 7.7k.

So, it seems to be a consistent downward trend for 15 months now.

As Neil mentioned a few times, just to curb my enthusiasm😊 often test results jump a lot, so don’t get too excited. However in my case they have been coming down for over a year, and coincidentally the trend began when I started the new lifestyle / diet. Not sure which part of my new lifestyle does it ,but I don’t really care,. Wish one day we'll have sufficient research results to point us in the right direction but until then I’ll carry on with what I’ve got.

I really believe that what works for me may work for others too, so maybe worth trying.

Good luck and stay well

[HappyEndings in reply to Blueish]

I am all over your post right now! I myself have found a common ground with fasting, considering my health. I find it the only way to maintain my weight that is not starving myself or depriving myself . This information you have provided--is so helpful! thank you for sharing!

[CBeauty]

I think the biggest benefit of eating well is knowing that you are doing what you can to stay healthy. I suggest avoiding inflammatory foods, i.e., sugar, fried foods, etc. and eating in a way that keeps digestion strong and regular.

My diet includes supplementation with Vit D and B12 because otherwise they show up low in my blood tests. I live in a northern, cloudy area without a lot of sun.

I echo others - what you eat will not make CLL go away and I don't think it slows it down either, in my personal experience. But it does make me feel better both emotionally and physically.

[HappyEndings in reply to CBeauty]

CBeauty, I agree it's all about what we can control at this point. We are in Wa state--so feel you on the cloudy wether with little sun. Your words helped! Thank you!

[AnneHill]

Hi, I have been diagnosed nearly 20 years ago when I was 43. I am 63 now. It was found when having a bloodtest for something else and was very low. I was told that nothing I did inc diet would make any difference. The thing I believe has more effect is stress. Going through a period of worry can make numbers go up.

This site wasnt here in those days and I was told to come back every 12 months. It was 9 years before I needed treatment which was chemo. Rituximab was added and was considered amazing.

Anyone being diagnosed now has a choice of treatments which are different altogether. I take ibrutinib and its a tablet a day.

My opinion after all these years is that if you eat a basic healthy diet and exercise a bit there is no need to dwell on the cll. If more fruit and veg is needed and less of other foods then change. Covid is making it unwise to travel but I wasnt given the advice you may get these days. I wouldnt go to countries like India or Egypt for instance because I would be wary about picking up bugs. I told the travel insurance company and didnt have a problem. Speak to your doctor about innoculations inc flu and pneumonia.

I have suffered terrible fatigue in the last 3 years before treatment and I feel that when newly diagnosed it is so shocking and we want to do something but if you are fit and happy why make your lives a misery. Enjoy life. At least when this terrible pandemic goes.

There may be a cure when your fiance needs it. Car t looks promising.

In all these years no one has found a diet that will cure cll. My Dad died in 1968. He wasnt as lucky as I have been because I have treatment.

Good luck for the future, Anne uk

[HappyEndings]

Your story really hit home! Thank you so much for sharing! What an amazing thing we have here with the "internet" there's a feeling about it --with all the recent happenings... that. one has grown to fear it or even hate it! Im on the verge! but this site-THIS OUTLET FOR ALL CLL PEEPS TO COME TOGETHER -- it is seriously bringing tears to my eyes! I am so grateful and praising God for his hand though these struggles... its really a miracle! Thank you to everyone ho has responded to my post, Im overwhelmed by the response and --seriouslyll been on here for over two hors responding to the support from y'all !! To add to your final point AnneHill_ I am really interested with the research provided on CART-T

God bless our researchers and specialists that never stop fighting for a cure!!