New diagnosis

[davjb15121]

I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.

[cajunjeff]

Welcome to the forum dav. Cll can be a very slow growing leukemia/lymphoma for many. Fortunately we have lots of effective treatment options for this who do need treatment, some lucky folks with cll never do.

I have not heard or read that b12 supplements have any real impact on the course of our cll. We can get all the b12 we need from a healthy diet. For those who are b12 deficient, a supplement might be warranted. Too little b12 can cause problems, but too much can too.

Many people take supplements not even knowing if they are deficient. I guess the thought is that if vitamin C, for instance, fights a cold then massive doses of vitamin C work even better. Thats not true, too much of most any supplement can be harmful to us.

While I doubt much harm can be done by taking some limited amount of daily vitamin supplements, the best approach to me for those wanting to add vitamin supplements is to test to see if they are deficient in some vitamin to start out with and try to address it with diet first and then supplements if recommended by their doctor.

I am not aware of any natural remedies that significantly alter the course of our cll. That said, I think universally cll doctors believe those of us with cll can benefit from a healthy lifestyle that includes diet and exercise. I suppose that could include supplements for those who dont get their daily needs from diet.

[davjb15121 in reply to cajunjeff]

Thank you for the fast response. I am just trying to get my head around the diagnosis. It's only been a week since I was told. Will probably learn more when I have seen my heamatolgist and what the treatment plan will be

[cajunjeff in reply to davjb15121]

I think most all of us got freaked out upon learning we had a type of leukemia. Below I have linked to a welcoming post I wrote for new members based upon my experience and some things I wish I knew at diagnosis. If you have the time to read it, I hope it’s helpful to you.

The odds are you will not get a treatment plan on your first doctor visit, by the way. Most people do not need treatment at diagnosis, many going ten or more years before needing treatment, some never need it. Our treatment options have been evolving so rapidly, what drugs are used frontline today, might not be five years from now. There have been amazing progress with cll treatments, for a lot of us even now its just a pill a day.

healthunlocked.com/cllsuppo...

[RavenPuff in reply to cajunjeff]

Do you suggest having a family member or friend attend the initial visit/consultation with a hematologist?

[cajunjeff in reply to RavenPuff]

i do, of course it depends on the person. My wife went with me on my first visit to MD Anderson for emotional support for me, I guess, and I think she wanted to hear first hand what we were dealing with. I prefer to go on visits my own now, unless it’s a procedure visit. Everyone is different.

[kitchengardener2 in reply to RavenPuff]

When I was diagnosed in 2018, my husband went with me for my first appointment with my consultant. I also took my friend, she is a rock in my life, a retired senior oncology nurse, she asked to come with us for the diagnosis. She said that she needed to know what was wrong because if I needed care, she was going to give it. Thankfully, yes I say thankfully because at that stage we didn't know what it was! It was initially thought I may have Myeloma. I was lucky to have 3 years watch and wait before treatment with Acalabrutinib. I feel great, in fact I thankfully have never felt ill. My blood numbers are considered to be within normal ranges now. Hope you gain something from our forum, it's best thing I found. However do look at the Leukaemia Care and Blood Cancer sites.

[niceone01 in reply to RavenPuff]

I have to go alone (disabled wife) so I take a pocket voice recorder with me. Consultant has no objection. It really helps bolster the memory.

[Astro617 in reply to RavenPuff]

YES! It's always good to have a second set of ears and moral support. It's so scary at first. On the way home, from my first appointment with the hematologist in 2005, I told my husband I was sad that I only had 10 years to live. He said, "She didn't say that! She said you might need treatment within 10 years." (I still remain in watch and wait, no treatment needed yet, knock wood.) I'm so glad he was there listening along with me. Take somebody who will sit quietly, listen, and take notes for you if you want them to. Also, go with your own set of questions written down. Try not to worry - I know, easy to say. Wishing you well.

[SoulSpy in reply to cajunjeff]

Hello, I was diagnosed with CLL 2 months ago. I'm 44 and I've been feeling really low recently and hopeless. I've just read your welcome post it has really helped me and reminded me I haven't been given a death sentence.

Marie x

(Leeds, UK)

[Jm954 Administrator in reply to SoulSpy]

Marie, if it’s any consolation to you, you live in one of the UK cities with a CLL centre of excellence where you will get world class care. You’re going to be just fine x

[Sunsandsurf in reply to SoulSpy]

Hi - I understand & remember those first months - the confusion, sense of hopelessness, etc. I'm now 4 years out from diagnosis. I'm still watch & wait. Gradually over the first year (as I learned more about CLL & my prognosis; how to manage some of the side effects of the illness; find supportive Drs, family & friends) most of those feelings have subsided. There are many days where I don't think about CLL at all. I'd recommend being patient with the process with the understanding that it will take some time to adjust.

[stevesmith1964 in reply to cajunjeff]

I was one of the rare ones... straight to a 2 unit transfusion and immediate treatment within 10 days of a routine blood test..

[davjb15121 in reply to cajunjeff]

Had my first heamatolgist appointment today. Told me I am at stage A on the Binet scale. No treatment yet. On the watch and wait. With 3 monthly bloods and heamatolgist review.

[RavenPuff]

I’m also newly diagnosed and have an appointment to see a hematologist at the end of May. Last summer, my labs showed elevated lymphocytes and I was b12 deficient, so I’ve been getting b12 injections every other week. It’s helped with the fatigue, but I don’t know if the hematologist will want me to continue the injections or not. My GP that prescribed the injections said the oral b12 supplements don’t absorb very well.

Good luck with your hematology appointment. The weeks of waiting to get in are definitely full of questions. I’m just trying to stay positive and not read too many things so I don’t get too scared.

[WestKYDude]

Got the same news on January 16th so I'm still pretty new to this journey. The best advice I wish I had received would have been to (1) read through the welcome post provided by cajunjeff and (2) the newly diagnosed links provided and (3) keep tabs with this forum. I went from thinking my life is going to end (along with all the thoughts/feelings associated with that perspective) to feeling like I've been dumped into this sucky CLL lifelong marathon. BUT, the important part is that we will most likely have a long life, given the statistics. The kind folks in this forum have quite literally turned my life around. Yalom says even lurkers walk away from psychotherapy groups with positive benefits, I can attest that reading in this forum has indeed made a huge impact on my life!

[Jm954 Administrator in reply to WestKYDude]

I’m so happy to hear that, it’s why we are all here - we remember those early, dark days and want to help others. We are all little lighthouses shining a light into the dark, showing the safe passage to lost and scared souls x

[CycleWonder]

I always take a loved one with me to my appointments with my CLL specialists. It is not unusual to misinterpret something said and a loved with you may be better able to provide an alternate, less dramatic interpretation!

[RavenPuff in reply to CycleWonder]

Thanks. I am a single mom and don’t have family nearby. My closest friend is about to move out of state. I do have a supportive community at work, so I’m not worried so much there, but I’m worried about finding the right support person to take to a doctor visit. I may FaceTime my parents so they can listen in at the appointment though.

[davjb15121 in reply to RavenPuff]

It's a pity you don't have anyone to go with you, maybe s work colleague you trust, also face time your parents. I live in Spain but not a very good Spanish speaker so have to take a translator with me. Hopefully they will allow my wife in to. I can't imagine going in on my own

[SERVrider]

My wife accompanies me to consultations with my haematologist. She is hard of hearing and uses an application that turns voice into text. My haematologist has no problems whatever with that on the desk silently turning speech into text. It is surprisingly accurate, too. Clearly, it works in the speaker's language so you'd also need to translate from Spanish into English.

Jammin me makes a vary valid point; be careful who you tell and what you tell them. As you will see from this forum, you are far more likely to die with CLL than from it. Google is well behind modern research but other people will look it up on Google and get entirely the wrong impression as to your likely lifespan. They may well write you off as being about to pop your clogs. It ain't necessarily so. If you're still working, employers might not realise that you are not immediately unemployable. Handle it on a careful "need to know" basis. If they don't NEED to know, don't tell 'em.

[Jujy]

Since you are asking about B12, you must be thinking of what you can do now. As you are living in Spain, you should consider all methods of sun protection - CLL makes you susceptible to skin cancers. Also, infections ( Covid, RSV, common cold) can become serious so take care (mask, distance). As to bringing someone, my husband (the patient) brings me. I would say bring someone who is a good listener and will stay engaged with the information and the emotional waves long after each visit. ( I try.)

[Pearlpink]

Hi davjb. What’s so useful about this site is that you can ask anyone anything - and it’s so supportive!

Wish I had known about it when I was first diagnosed!

To be honest out of all my experiences, the beginning was the worst. It’s that horrible feeling of uncertainty. They have to do tons of tests and having period of time where you don’t know the exact answers made me feel very anxious.

Everyone here would say to find a specialist CLL consultant.

My first consultant had no bedside manner. She spent 6 minutes with me and dismissed my illness saying cll was the best to have, and that I would probably never need treatment. She dismissed my fatigue and poor quality of life as nothing to do with CLL.

A few years later when it was clear I was going to need treatment I got a second opinion from a cll specialist and have never looked back. I started treatment last year and everyone so caring that it’s wonderful.

So I would say make sure you see someone who is kind, and an expert, and listens to your concerns.

The beginning is definitely the worst because it hits you like a ton of bricks when someone says “leukaemia” so I echo not telling people until it suits you - although covid has made that difficult as you want to be protected from infection.

I agree that you should go with your wife as cll tends to affect the memory a little in some of us, and you need someone to have your back.

Also I have learnt after 4 years that I need to write down my symptoms and questions in advance as I completely forget them in the middle of the appointment.

You will meet a lot of fabulous people and make some very good friends.

It’s weird how it works out. I’m eternally grateful for being diagnosed before covid as I had no idea I was susceptible. Because my first consultant ignored my symptoms I didn’t get treated until venetoclax and obinutuzumab had been approved! So I’ve been very lucky!

There are so many wonderful treatments that it’s a very different illness now!

I’m half way through my treatment and it’s been fine! The cll is melting away!

Good luck!

[Katie-LMHC-Artist]

Good morning! I just read your post and all the great replies! I was diagnosed in 2010 and like everyone else, I thought it was a death sentence. I am a licensed behavioral health provider and soon realized that I had to use all the tools I use with my clients on myself! I found a "cancer sponsor" and had two sessions with her. She was surprised that I wanted to continue to work after the diagnosis. She is also living with CLL. I ended my connection to her and decided, being in W&W to create my own alternative treatment plan. I connected to a TCM practitioner (Traditional Chinese Medicine), participated in weekly energy groups (Tong Ren), tried several diets, went to Kripalu in the Berkshires (Mass., USA) and took a nutrition class. I took a course in 2013 and earned a certificate as a holistic health coach and utilized that with my clients. In 2015, I earned a certificate as a cancer coach. My therapeutic practice went into a new direction, and I feel honored that I can counsel people with chronic illness and cancer. I spent 12 years in W&W, and I am glad that I kept working. Last December, I started medication, Acalbrutinib. I experienced some side effects in the beginning, but I am grateful to this site. I found out that Excedrin Tension Headaches would help with the headaches and then through my acupuncturist started taking additional supplements including magnesium for muscle and joint pain. I guess my takeaway is that we are all on a journey, and empowering yourself with dietary changes and alternative paths can help us feel empowered as well as help our own mental health. Last year I worked with Glenn Sabin, a cancer coach who recommended the site cllsociety.org. I signed up and get regular e-mails with info in addition to taking some of their workshops on CLL. Hope my experience and journey is helpful!

[Vizilo]

I was diagnosed in 2014 by a top university hematologist. I was taking b-12 supplements at the time. I was told that I had 1-2 years to live because of chromosomal deficiencies. I literally got a death sentence and yet 9 years later, I still have no symptoms. I spent the first 12 months literally scared to death.

Thanks to a very compassionate and sensitive CLL specialist, I realized that CLL is named “chronic” for a reason. He told me on day one that I would live a very long time (and this was before the likes of 3 generations of BTK inhibitors and Venetoclax)

Most of the inputs on this site are constructive, supportive and very valuable in helping you in your “journey”. But remember that all our CLL experiences will be different. And for every negative experience, there will be one or more positives. I try to focus on all the good experiences.

I agree that it is very useful to take someone with you. He or she does not have to be close to you. It’s another set of ears. We all hear different things. I always focus on the negative things my physician might say whereas my wife takes away all the encouraging things the doc might say (like your next appointment is 6 months away!!)

I also find it useful to write down questions in advance - most of us tend to forget things in the stress of the actual meeting.

Remember that CLL is no longer a death sentence - it’s now a life sentence. Most of us eventually succeed in learning to live with it.

Take care of yourself!! We’re all with you.

[Gsxjax]

I tried B12 as a way of self help. It made no difference to my results, but saying that it helps keep your body's blood and nerve cells healthy and helps make DNA, the genetic material in all of your cells.So by taking B12 supplements is not a bad things. Your body will absorb what it needs and excrete the rest.

It is worth getting a blood test to see if you are low in B12 before starting taking it

[kavidacat]

Taking B12 will make no difference. Wait to see your haematologist. If its any consolation I have had CLL for eleven years now and only just nearing the time for treatment. Have been lucky and hope you are too. X