Depression and CLL

[JLD1969]

Hi, my husband was diagnosed with CLL three weeks ago. He is on watch and wait. He is very focused on his nutrition and exercise at the moment but is getting very depressed as he is not sleeping well due to night sweats, which is further exacerbating his fatigue meaning that he has no energy to exercise. I want to support him and would appreciate any advice. Many thanks

[Vizilo]

I am sorry to hear that your husband is not coping very well with his diagnosis. I was diagnosed almost 10 years ago and given 1-2 years to live. You understand how depressing it was to hear that prediction. I then watched and waited for 6.5 years and almost 10 years in I still have no symptoms.

The outlook for those with cll has become much more hopeful in the last decade and the disease truly has become chronic given the number of new, novel and effective treatments.

While your husband has to work it out for himself, the grey days do pass for most of us. Exercise does help a lot. It’s counterintuitive but the more tired you feel, the more you should exercise. It usually makes you feel better and gives you positive thoughts. Talking about your feelings also helps - so keep supporting him. It’s good for both of you!!

Good luck!!

[JLD1969 in reply to Vizilo]

Thank you! I do feel allow it is counterintuitive to exercise the mental benefits make if worth a try.

[WinJ3]

I'm sorry to hear about your husband's diagnosis. I was diagnosed with CLL over 12 years ago and was on Wait and Watch for almost 10 years before treatment. It's great that you're looking for ways to support him during this challenging time. Here are some suggestions that might help:

Open Communication: Encourage your husband to share his feelings and concerns with you. Let him know that you're there to listen and support him.

Medical Follow-Up: Make sure he attends regular check-ups with his healthcare provider. Wait and Watch is typically managed through a combination of monitoring, lifestyle changes, and potentially medical treatment if the disease progresses.

Seek Professional Help: If his depression persists, consider suggesting professional help such as counseling or therapy. A mental health professional can provide strategies for managing his emotions and offer coping mechanisms for dealing with his diagnosis.

Sleep Hygiene: Help him establish a bedtime routine that promotes better sleep. This could include avoiding caffeine and electronics before bed, creating a comfortable sleep environment, and maintaining a consistent sleep schedule might help.

Physical Activity: Since fatigue is a concern, encourage gentle forms of exercise that won't drain his energy. Even short walks or gentle stretches can help improve mood and overall well-being.

Nutrition: Continue focusing on a balanced and nutritious diet. Eating well can contribute to his overall energy levels and immune system, which is important when managing a chronic condition.

Hydration: Staying hydrated is essential for overall health. Ensure he's drinking enough water throughout the day.

Support Groups: This forum has been a great resource of information and support for me. Sharing experiences with others who are going through similar challenges can provide comfort and understanding.

Distraction and Hobbies: Encourage him to engage in activities he enjoys or explore new hobbies. Having interests and distractions can help take his mind off worries and improve his overall mood.

Mindfulness and Relaxation: Introduce relaxation techniques like deep breathing, meditation, or yoga. These practices can help reduce stress and improve sleep quality.

Quality Time: Spend quality time together doing things you both enjoy. Positive interactions and emotional support can have a significant impact on his mental well-being and yours too.

Patience: Understand that adjusting to a diagnosis and its effects can take time. Be patient and continue showing your love and support.

Remember, every individual's journey is unique, so it's important to adapt these suggestions to your husband's preferences and needs. If his symptoms or emotional state worsen, it's advisable to consult his healthcare provider for further guidance.

Best wishes,

Win

[JLD1969 in reply to WinJ3]

Thank you so much for such detailed help. I will definitely use all your suggestions.

[jimvan]

Just before, and after my CLL diagnosis 7 years ago I had pretty frequent night sweats that bothered me. I went to see an acupuncturist at the time and she was able to eliminate them. After beginning treatment with imbruvica 6 years ago, many of the symptoms of CLL have lessened for me. I am exercising daily and greatly enjoy it. All the best to your husband.

[JLD1969 in reply to jimvan]

Thanks. I hadn’t thought about acupuncture. I will definitely book something up.

[Blue-bird_]

It's possible that your husband is getting depressed because he hasn't accepted that he is unwell.

When my husband was diagnosed, he would become frustrated and irritated because he needed help and couldn't do things he was used to.

Over time, he has adjusted, but it is still a balancing act to respect his independence while assisting him with everything (he has a dual diagnosis, so your husband may not need as much care as mine does).

It's difficult to wrap your mind around your new normal. I tried to encourage my husband to let others help him and reassured him that he wasn't weak or 'pathetic'( his words) for allowing people to help him.

It could be helpful to just reassure your husband that it's okay for him to invest his energy in rest. It sounds like a paradox, but taking time out of our day to rest can be difficult because we feel we should be using our energy on something more productive.

There is also a lot of fear associated with the changes. He may feel that if he let's go of his ability to exercise, he will end up losing other abilities, too. Unfortunately, this may well be the case, but that's a reality he will need to face and adjust to if it comes to it.

My husband and I spoke very openly about his concerns. We talked about all possible outcomes and just ruminate out loud. We still do this 18+ months post diagnosis. If you don't feel you are emotionally stable enough for this conversation ( because it was not easy for me to speak candidly about losing the love of my life), definitely encourage your husband to speak to someone.

Even if it is an anonymous one-off support line or a therapist he can access through his employer, conversation really does help put things in perspective and give you guidance on what to do next.

It could also be helpful to speak to a counsellor yourself first, on your own. They can give you more specific advice on how to support your husband.

It's an ongoing process and you don't have to 'solve' everything immediately. Just try to laugh everyday about something. The jokes don't gave to be intelligent or well thought out. Just find something to laugh about. The dark thoughts are inevitable but laughter can make them less intense.

[JLD1969 in reply to Blue-bird_]

Hi, this sounds very like my husband. Thank you for your help. It’s nice to know that what we are experiencing isn’t unusual.

[Nucleusman]

tell him he won’t die from CLL but with it. With newish drugs like Calquence he could go into remission after 6 months or so. I do sympathise with him on the fatigue. it’s horrible but you either have to try to ignore it, go with the flow or accept it’s not every day.

[Smakwater]

Is your husband's condition a clinical diagnosis?

CLL influenced fatigue can present an appearance of being depressed.

In my case, I appeared depressed at times when in fact, I would just be cooperating with the condition. I was very frustrated and even disappointed, however, I did not perceive myself as being depressed nor did my doctors diagnose me with depression.

The challenge of progressing CLL aka "watch and wait" may require prescribed physical therapy and or counciling.

CLL sucks, and being frustrated or mad at it is normal -But only to a point.

JM

[lankisterguy Volunteer]

Hi JLK1969,

-

Please look for the box on this page labeled: Related Posts (Upper right column on computer screens, scroll way below on mobile devices)

*CLL, Fatigue, & Depression

*Depression and CLL

*Husband with CLL - struggling with no energy, motivation and depression. Help.

*Relapsed CLL and Anxiety/Depression

*Cll and anti depressants

-

This discussion from yesterday may have some useful suggestions: healthunlocked.com/cllsuppo...

-

Len

[Big_Dee]

Hello JLD1969

I always suggest that people with CLL eat balanced healthy meals and moderate exercise for if and when they may require treatment. Like they say use it or lose it. Blessings.

[Thundercat2]

Everyone here has dealt with this at one time or another. Sadly CLL can add to mental stress sometimes just as much as the physical. Hopefully the suggestions here have helped. Just wanted to offer up my support to you as well. It's not easy being the caretaker either!

Fortunately things change and often for the better. Wishing you the best

[skipro]

Finding out that I had CLL caused a lot of depression, sadness and mixed emotions for me. I could hardly endure it.

12 years later, I have now outlive my life expectancy because I had bad prognostic markers. I was told they had 1 to 4 years to live.

I had chemo immunotherapy in 2018, I nearly fatal fungal infection in 2019, and a relapse in 2020.

Three years later I started treatment again.

None of this has been easy, but there are caught couple of things that made it bearable.

I saw the appropriate treatment from mental health professionals.

I made a promise to myself to only think about the disease on the days that I had my labs done.

Getting outside every single or do some form of exercise, even if it was to try to snowshoe and crawl most of the way back to my car or 20 minute walk during the bad times, or much more aggressively during the good times, always helps me feel better about everything. Nature is so therapeutic.

I also listen to uplifting music every day.

Lastly, I have turned my heart to God and Jesus Christ in a much deeper way than I had before, and have received unimaginable help, strength, hope, and positive outlook.

None of this is easy and I do not envy anyone who has to go through it, so my heart goes out to all to you and your husband.

Everyone on this site has your back.

God bless

Skipro.

[Kvb-texas]

Hope to provide some encouragement to you and your husband. He is lucky to have you and your support. I was diagnosed in 2021 and am grateful the support and encouragement of my wife… it means so much. Having said that, the initial depression is unavoidable… but it does get better… a lot better. It took a couple of months for me to mentally adjust and am now happier than I have ever been. I think a big part of the depression is the initial shock and lack of knowledge of the disease and all of the unknowns. As you learn about the disease, you learn about the multiple levels of treatment options and how effective they are. And for me, my treatment led to me feeling completely normal again. I go many days without thinking about it at all. So keep up the encouragement, that is an important part of the recovery. There really is a lot of hope to reach long term remission with one of the many effective treatments. It just takes a while for it to sink in. Best of luck to you and your husband. Kvb-texas

[Astro617]

It took me about 3 months to come to grips with my diagnosis. Over time it just faded into the background. I had trouble sleeping and eating and I lost 35 pounds. I was overweight so that was a lucky side benefit! I've been very fortunate and am still in watch and wait (since 2005!). I came to a point where I didn't give CLL a second thought, until COVID arrived. Now I continue to isolate from indoor groups and always wear an N95 mask in public indoor locations. I eat as healthy of a diet as I can, exercise, meditate, laugh and try to get enough sleep. My specialist encouraged me and told me I was doing all I could do. I hope your husband feels better soon, it just takes time to come to grips with it. He's lucky to have a supportive spouse! (I am too!) Exercise may help him sleep better too. It's just really hard at first.

[bennevisplace]

Night sweats can be a symptom of CLL, and newly diagnosed patients sometimes report sweats when it's just a case of the bedroom or bed covers being too warm at night (guilty as charged, me). But if it's extreme and you regularly wake up soaking wet, that's a bodily reaction to CLL. If it's really that, ask your specialist if there's anything you can take to turn down your body's nocturnal thermostat.

Personally I sleep better with a fan turning all night, mainly because it screens out sounds that might otherwise intrude, e.g. garden birds arguing at 5 am.

Sleep hygiene is so fundamental, it's worth concentrating on that first, I feel.

Good luck.

[Shedman]

How was he diagnosed?

May sound like a silly question, but some are diagnosed via high blood count, others via a swollen lymph node biopsy.. the latter are considered SLL (same disease, but the tumour cells hide in lymphatic system) and usually diagnosed at a later stage of progression.. Does he have a stage indication from his consultant yet?

How is he managing the night sweats? Sleeping on a towel can mitigate some of the unpleasant wetness.. facilitate evaporation etc.

If seeing a therapist, I recommend a hypnotherapist, with high priority on the initial 'induction in to relaxation' process.. if deeply relaxed (this isn't stage hypnosis/hysteria - you don't come under the spell of the hypnotist) it can become very easy to talk about all the difficult sense of loss and coming to terms with.. this without getting stressed out!

It was a revelation to me - I'd walk out of hypnosis sessions really relaxed, no stress at all.. where a lot of talking therapies re-traumatise the customer with explaining all the difficult stuff over again.. nil relief.

Fatigue via CLL or lack of sleep are troublesome. The CLL fatigue may be of cytokine storms rather than 'real' fatigue, but unrestful sleep is awful.

It takes time to come to terms with the ins and outs. There are no magic solutions via diet, and important to learn that a lot/most cancer is fairly random: no blame to apportion will help.. "what if I'd lived a healthier life?" Is not a useful thought.

Worth using your profile to share aspects of journey/diagnosis/stage to get more attuned responses here. We're all in this together.

[AnneHill]

I have had cll since being diagnosed in 2001. It shows it can be treated. 9 years before 6 months treatment. Then another 9 years before starting Ibrutinib. I take a tablet every day and life goes on. We need to be thankful we have treatments that work.

Your husband is the same man he was 3 weeks ago and I have always known mine didnt worry about fitness and now he is short of breath. He could have COPD. Suddenly we think we have to do something. Its on my mind and I am panicking and wondering if we should eventually move house.

Your husband will need to come to terms with cll but importantly realise that things are amazingly different and improving all the time. I have had fatigue for years and at times it is worse than others. It just takes time.

You wont help if you start changing his life too soon. We need to give it time and be the stability and support they need.

Its not easy. My husband made toast and I wanted to say that he needed to go steady with the butter and marmalade. I told him yesterday that we could both do with losing some weight around our middles.

Good luck, Anne uk