Multivitamins ... or not?: I'm 72 and was... - CLL Support

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Multivitamins ... or not?

Penicillen profile image
10 Replies

I'm 72 and was diagnosed with CLL 2 years ago. I'm unmutated with possible underlying MDS. I started a course of Acalabrutinib September 2023 which failed with a few months. I'm currently on second line treatment of venetoclax and finished a 6 month course of rituximab 3 months ago. I have been taking Solgar vitamin D supplements about 3 times a week. Currently I feel tired ALL the time from when I get out of bed in the morning until I go to bed at night. I eat lots of fresh food - salads, fruit, beans, pulses etc but no meat. I do however eat fish about twice a week. I'm wondering if I should take a multivitamin supplement. I know they used to be frowned upon but I've recently read that some studies show they can be very useful. If not multi vitamins should I take another single vitamin supplement? I should say I'm neutropenic (I have filgrastim injections twice a week) and I also have low platelets. Haemoglobin hovers around 120 which is just within normal range. I'm hoping others on this amazing site will have some advice or suggestions. Any advice would be appreciated.

Thank you.

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Penicillen profile image
Penicillen
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10 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Penicillen,

Fatigue is one of our most often discussed issues. See these 1839 past postings:

healthunlocked.com/cllsuppo...

>

My GP told me that most doctors really hate tracking down the cause of fatigue, since it takes lots of attention and testing to step through the differential diagnosis to pin down a cause.

>

With your comobitities - I would suggest you NOT self medicate ( multivitamins and D3) but have your hematologist test your iron, ferritin, D3, B12 etc to identify what supplements are appropriate. Then keep asking both your hematologist & GP to keep investigating the fatigue causes. The neutropenia may need to be considered as well as your MDS, those would all point to something out of wack with your bone marrow, but I'm not a doctor- you just need to encourage your medical team to figure it out. Be persistent and firm- ask / demand their help at every appointment.

>

Len

Penicillen profile image
Penicillen in reply tolankisterguy

Thank you Len. I'm seeing my consultant on Tuesday next and will ask for the blood tests you recommend. She (my consultant) can be a bit tetchy if I ask too many questions but I'm past worrying about things like that as the past year has been such a roller coaster. I'll post the results as might be of interest to others.

Clare

Jm954 profile image
Jm954Administrator

Hi, the fatigue of CLL is a tricky one and probably has different causes for different people. At 120 your haemoglobin is good and shouldn't be a cause of fatigue. Have you discussed it with your doctor?

The issue of supplements is a dilemma that most of us struggle with It sounds as though your diet is basically good so probably no need for the shotgun approach of multivitamins.

There a few things that have been shown to be beneficial and vitamin D3 is probably the most important so you're doing great there. Zinc with Vit C is meant to support the immune system so that might be helpful. Please do not take iron supplements as iron overload can be a problem if you have MDS.

As with all these things the first place to ask is your doctor as they will now what might suit specifically you.

Jackie

Penicillen profile image
Penicillen in reply toJm954

Thank you Jackie. I'll now try taking vitamin C and zinc occasionally as my husband has a good supply of both. I read somewhere (ages ago) that vitamin C wasn't a good idea for cancer patients as it encouraged cell growth including cancer cells. I expect thats probably a load of nonsense.

Clare xx

PoisonDwarf profile image
PoisonDwarf

Hi Penicillin,

That's a great name, a life saver! 🛟

There's little I can add to Len's excellent advice, except to add thyroid levels to the list of blood tests.

A note on how doctors tend to dismiss fatigue. Len is again spot on, based on my experience. Be persistent, remind them it's a quality of life issue again & again, then some more. If needed remind yourself that fatigue isn't just an inconvenience and nor are you. You're looking for answers.

It's controversial, but there's increasing evidence that hemaglobin needs are more individual than population guidelines allow. You mentioned that your HGB levels were on the low side, if your ferritin levels come back under 50, I'd also ask for an iron panel to be done.

I hope you find answers. Please update us if you do.

Penicillen profile image
Penicillen in reply toPoisonDwarf

Hi Poison Dwarf, thank you for your very helpful reply. I'm seeing my consultant on Tuesday and will ask for the tests and follow up with her if they show low readings.

I took my name because my mum was seriously allergic to penicillen and was always stressing to us that whenever we went to a doctor we had to remind them of her allergy in case we had it too. None of us have a penicillen allergy but the nick-name reminds me of her although sadly she's long gone now.

Clare

PoisonDwarf profile image
PoisonDwarf in reply toPenicillen

That's a lovely reason to take the name. I've had an allergy flag on my health records for penicillin since I was a kid! I finally got allergy tested for it last year & I'm not allergy or I've thankfully outgrown it.

Good luck with your Consultant.

Lynn

Spike62 profile image
Spike62

I concur what lankisterguy's recommendation that you test with blood markers before you supplement in the hope of stumbling upon what fatigues you. As someone how was diagnosed with CLL even given the fact that I was a very good body weight and muscularity, I had a hard time believing all the micro-nutrients deficiencies and inflammation markers I had until I tested. If 70% of Americans are overweight, it's hard to image all the issues the average person has without knowing.....I've been using my W&W time to attack these one by one and have made some good progress getting the following areas into ideal ranges: A1C, Homocysteine, total cholesterol, LDL, Vit D, b Vitamins, Ferritin and a few more. Others, such as MCV, platelets, I have been unsuccessful in improving in a meaningful way to date. 13q, mutated, 2+ years W&W.

Edalv profile image
Edalv

Usually CLL specialists don’t like to request tests to check nutritional deficiency. You may want to ask your GP for those kinds of tests. I specifically looked for a doctor that was interested in nutrition and vitamin deficiency. I wanted someone that could guide me thru the process of checking for that. It was not an easy process looking for a doctor with that kind of knowledge. So far it has worked well for me… 🙏

AussieNeil profile image
AussieNeilPartnerAdministrator

Debra-Lee, good point about the subclinical infections . Penicillin, that's something that I have experienced and it is very fatiguing!

I struggled with neutropenia and fatigue soon after I was diagnosed. My diagnosis resulted from an investigation into what was causing what quickly became severity level 4 neutropenia. I averaged a neutrophil count of 1.0 during my 11 years of watch and wait. Like Penicillen, I needed filgrastim injections to boost my neutrophil count, but my specialist held off prescribing them until the last couple of years before I was eventually treated for my CLL, as the evidence wasn't in for long term use. I ended up having over 200 Zarzio injections, sometimes up to daily. I would regularly get fevers in the afternoon in my first year or so of living with CLL as I struggled to fight off infections, but I found that most of what I was fighting was courtesy of what other people shared. So most of my gains in fatigue reduction were from reducing my infection risk by social distancing, masking and hand washing. I discovered my vitamin D serum level was low and boosting that into the normal range coincided with me being able to exercise without wiping myself out with fatigue for up to several days, so I could finally gradually improve my fitness after being severely impacted by a cytomegalovirus infection. We unfortunately have a coexistence with pathogens that are always resident in our bodies, such as the various herpes viruses as well as lots of bacteria. Most of those are benign and can even help keep bad bacteria in check, but when our immunity is low, our reduced ability to keep bad bacteria in check can enable them to get the upper hand and we become ill.

As I covered in this post from 2014, Safe Eating for Poor Immune Function - Beyond the Neutropenic Diet

Over the last decade or so, cancer nutritionists have increasingly questioned whether classical neutropenic diets are the best option for neutropenic patients. This 2021 research from the University of Cologne, the centre of the German CLL study group validates this concern, determining from a propensity score–matched case-control study that:-

• The benefits of a germ-free diet for neutropenic patients with cancer are scarce.

• Food restrictions may increase malnutrition and gastrointestinal side-effects.

• Standard diets do not increase infectious complications in neutropenic patients.

• Incidence of diarrhoea and nausea can be reduced by standard diets.

• Implementation of standard diets for neutropenic patients with cancer is safe.

healthunlocked.com/cllsuppo...

I found that I could eat a near normal diet without getting ill while neutropenic. I'd wash fruit and vegetables well before eating them raw, avoiding any with bruises or broken skin. I was very careful about avoiding any foods likely to harbour high bacterial counts, including packaged salads from the supermarket, any foods left out at parties, restaurants, I made sure to put uneaten food promptly into the refrigerator and not eat it after 24 hours and so on.

There's more about what you can do to reduce your risk of infection in this post, with neutropenia covered towards the end.

healthunlocked.com/cllsuppo...

With reference to your username, that's great that you've determined that you don't have a penicillin allergy, because it makes living with CLL challenging when penicillin based antibiotics can't be used. Years back I wrote this post healthunlocked.com/cllsuppo...

'If you have previously been informed that you among the 10% allergic to penicillin, please confirm that's indeed the case. Your life may depend on it.

"Penicillin is the most commonly reported drug allergy. But the key word here is “reported”. Only about 20% of this 10% have a true penicillin allergy

'

I hope what's been shared will help you overcome your fatigue. It's very frustrating not being able to do what you'd like to do, because you can't think clearly or are too tired to function. I actually found that going for a walk helped me most - provided I wasn't so badly fatigued that all I could do was drag myself to bed.

Neil

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