What things made you feel better when dealing with depression, fatigue and fevers or other side effects of medication or treatment?

[keikikumu]

I'm the spouse of a CLL patient who is in chemotherapy right now, and could use some suggestions from cancer patients who have "been there." I can't seem to lift my formerly VERY fit and active 74 year old husband's spirits lately as he deals with some bad side effects. We've tried short walks (he tires very easily) and watching movies (comedies). Suggestions would be appreciated!

[Panz]

Do you accompany him to have CLL appointments? I see my doctor monthly when I receive my IVIG infusion and when they do those labs each month they always ask if I am having issues with depression and they work with those who do have issue. I wouldn’t wait too long…I would address it with his doctor and ask for direction on depression and fatigue too! Seek help and be his advocate. All the very best!

Panz 🙏💕🌴👍🙂🌈☘️☔️

[keikikumu in reply to Panz]

I do accompany him to every appointment (except blood tests). I hear you on keeping tabs on the depression; we are no strangers to depression (other family members) and we both know that ignoring it is not the prudent thing to do. These new symptoms (extreme fatigue, low grade fevers and cough are new within the last month, and also emerged after his second Covid bout in December/January. He took Paxlovid and recovered pretty quickly and it was a while before these new symptoms appeared. Addressed them with his oncologist, who took him off Venetoclax but continued his Obinutuzumab infusions, and has now ordered the CT scan and a visit with a pulmonologist, still over a week away, but getting closer. Appointments are hard to get immediately, with almost all doctors, here. Thank you, Panz, for your input. Appreciated!

[Sepsur in reply to keikikumu]

have a look at post viral syndrome

”Viruses cause the immune system to respond and attack them. This response causes stress and inflammation in the body. The effects of this response often leave people feeling down, fatigued, and sometimes depressed.”

medicalnewstoday.com/articl...

[RosettaClapp in reply to Panz]

I did not want to be accompanied to any medical appointments! I feel to have to be accompanied is infantalising and would certainly add to feelings of depression. Maybe just ask your partner?CLL and it's treatment certainly bring home the reality of mortality and perhaps he needs to talk about his fears and or regrets? I find something to look forward to lifts my spirits

[scryer99]

It's hard, no question.

A few things that have helped:

- Very light exercise. Stretching and yoga kinds of things. Anything at all helps, and one of the unequivocal findings with cancer patients is that exercise is strongly beneficial, no matter the amount.

- Seeing friends, even if by video or text message. The more social contact and feeling that "other folks are in the boat with me", the better.

- Counseling support - religion if that is a factor in your life, online support groups for CLL (CLLsociety.org organizes some), therapy or social worker support if he's willing

- Find a project to work on during this time that fits your health and pace. Writing a story for kids/grandkids to read. Learning to knit. Following something that's not cancer-related and politically neutral, like our space program or climate science.

- Learn something new. I've been reverting to political philosophy of late, it's been interesting. Not my usual subject matter.

- Meditation. Helps reconcile the pace you need to be at right now vs. the pace you want to be.

- Comfort foods, in moderation. Cherry pie and barbeque are my go-tos, though I can't do them too often these days.

The main thing is to accept that slow-and-steady not only wins the race, it's what you can do right now. I've slowed down. It's been helpful.

Good luck. There are no easy fixes here, and it will take a little time.

[keikikumu in reply to scryer99]

Excellent suggestions, and he does seem to be realizing that light exercise is a must, no matter how he's feeling. He's doing short walks. We both have been active in Pilates for years and years, and when our instructor decided to move off-island, she sold us her "tower" that we made a place for in our garage. Post his Covid bout in January when he was feeling pretty good, he was working out on the tower at least twice a week and riding our recumbent bicycle another two times per week. The man is ALL about fitness, trust me. It's just that this setback seems to have sucked all the air out of him. He's not used to feeling weak, feverish and unable to do even light cooking or housework. I have found if he talks to friends on the phone or FaceTime that he perks up for a short period of time, so you're right on about that. His oncologist seems a bit mystified by his symptoms and has ordered a CT scan and a pulmonologist visit. I think we're waiting to see what they find there (an infection, bc of the fevers?) or ugh...something untoward inside his lungs or elsewhere. So we're sort of in limbo right now. Very grateful for your suggestions and input, very helpful! Hope that your journey continues on a good path as well. We're all in this together, apparently!

[scryer99 in reply to keikikumu]

Sometimes symptoms don’t have enough explanation, and if doctors and nurses don’t see a symptom supported by clear numbers, they can be dismissive, which really does not help. I had one member of my team constantly downplaying fatigue symptoms and it is discouraging for sure. Only after I have been in treatment for some time do I have the data to realize how crummy I have been feeling for the past year.

To counter that, my wife simply asks me how I’m doing and is a good listener. That simple thing helps a lot. Someone cares and someone believes me.

The balance between exercise and overdoing it is hard for someone who was active. I was a 100mi+ a week cyclist before this. It’s hard to exercise, but I also am prone to having a good day, overdoing it, and making things worse instead. Keep it simple. Light stretches and yoga on a mat vs kettlebells and push ups.

[keikikumu in reply to scryer99]

Yeah, I've definitely seen him overdoing it on a good day and paying for that the next day. He's learning as he goes, I think. He's a pretty fast learner, and I think as we move through this, he will definitely listen to his body and be apt to take it a lot more slowly than he ever has had to in life, thus far anyway. You sound as if you've come to terms with that after leading a super active life, and I think my husband will as well, given time. He is a sailor (a 40 foot Cal40), a handyman, fixing everything and anything on the boat or around the house and loving that, as well as a good 3-4 times per week exercise guy, as I said. It's going to be a matter of taking a step back, slowing down, and realizing that that's okay right now, no one is "judging" him. He'll get there. Thanks so much for your input. I am reading him everyone's replies, and suggesting that he get on here himself, as it's all so helpful. He tends not to engage with these kinds of things on his own, but listens intently to the replies/suggestions that I share with him. So many wonderful suggestions and encouragement from this caring group!

[SofiaDeo in reply to keikikumu]

I try to look at it as "I am sick, but fortunately not so sick that I *must* be in a hospital to recuperate". Similar to when I broke my leg. I got seen in the ER and a cast put on, and since I had help at home I didn't need to be stuck in a rehab facility. I was able to recuperate at home.

So with our broken bone marrow, it's not as fast as even getting a cast. His bone marrow is being stiched back together, and everyone knows, when you have stitches you need to take it easy a while til they knit/heal fully. Especially deep internal stitches. I find it preferable to be "hospitalized at home" and do recuperation there, instead of some medical/rehab facility. Normal to feel "off" a while, one is still "healing". CLL induction isn't as easy as putting on a cast or a 4 hour operation, it can take weeks.

[JigFettler Volunteer]

Have the courage to be creative.

scryer99 sums it well.

Mindfulness stuff. For me it was learning new things. Birding, woodcraft, and painting, all can be done with minimal effort.

But, don't forget exercise. The loss of fitness many of us experience is very significant.

Always check and treat infection, anaemia, thyroid, blood sugar, the B vitamins levels... family Dr stuff.

Jig

[neurodervish]

I agree with scryer99 too, tho personally, I'd think twice about comfort foods. Lobster ravioli was my favorite comfort food, but chemo (w/nausea & vomiting) ruined it for me. I really wish I had never eaten my favorite foods during treatment weeks. I'll never eat pot pie again either.

One possibility to consider is that depression can be a symptom of long covid. Sometimes understanding why we feel how we feel can help. mayoclinic.org/diseases-con...

It's wonderful that you're here on your husband's behalf. If he could be inspired to connect with group members directly, he may find it beneficial. It's hard to explain, but connecting directly with people going thru the same thing can really help. Being a patient and feeling lousy can make a person feel diminished, especially if he's used to being physically fit and active. It's a kind of loss of one's identity, which can feel demoralizing. Realizing that he's not alone may help give him perspective.

Wishing you both the very best.

[Adiepie]

We tried to get through the rough bits by going to our favourite places - specifically the coast of Northumberland. Crashing waves and empty beaches with the dog manage to lift those dark moments, as well as providing memories for later. You will get through it together

[NaturalWaze]

It might sound odd, but “giving in” to the fatigue and feeling down helped me get through it instead of fighting it and pushing myself to do things. Naps instead of walks, lots of TV streaming, and comfort foods (breads, pasta, ice cream, which I typically did not eat). It was hard for me to get to the place of allowing all this, as I normally push myself. Interestingly enough, I had a strong yoga and meditation practice before treatment, but I was unable to meditate when on treatment and did minimal yoga. Not sure why; I just was not the same on treatment.

Best to your husband.

[Sojomama13]

I would check to see if he could join a support group on zoom. In my group there are folks who haven’t begun treatment, have completed multiple treatments and are in remission. This has been very helpful to me, moreso than speaking to a therapist. These ladies, who have different cancers than me, have been a tremendous boost to my mental health. Our commonality is motherhood and cancer.

All the best,

Sandy

[NYCBill]

K. I went through a rough 2 1/2 years on treatment , understanding everything you mention. I completely agree with everything suggested by Scryer, particularly the last point—accept where you are, understand and try to be flexible. Not a cockeyed optimist necessarily, but knowing things get better sometimes and the body or nature sometimes takes care of itself. Let it. Be forgiving on yourself. But do try to keep to a simple regimen of good things (cited in emails) and if there is any moment in the day the psychological pain eases, be thankful for it. For awhile nights were easier for me, and I only realized it after I lost that one comfort. … If silent meditation is hard at home, I stumbled onto toe tapping to music (chakra) and rhythmic breathing through an integrative medical service at NY Hospital. No panacea, but something. … I, too, leaned on comfort foods, needed them evenings, wonder why now but remembering the pain and depression it’s easy to see how a stack of fig newtons helps. Warm thoughts. Bill

[Smakwater]

Hello keikkumu,

My offer is not a full cup of tea, yet a half cup with sugar can be a good start.

We are all individuals with individual needs and perspectives. However, I believe that we all can benefit by filling the cup with hope that is substantiated through knowledge that has merit.

In my case the transition from being ruled by involuntary fatigue and anxiety to restoring a more normal sense of being began with taking small steps toward understanding the disease, prognostic markers, and treatment strategies.

Eventually these small steps produced a reference of sound measure for making decisions. The decisions became participation in the outcome. The participation in the outcome produced confidence in the decision. Hence, the substantiated hope vs the repeated I'm fighting a disease parody.

The HealthUnlocked forum is one of the great resources that provide access to merit based knowledge. Some of the growing pains are learning how to pass in and out of the expanse of information.

Please be encouraged to stay the course. If you do, by the probability of logic it is reasonable to expect the benefit of replacing anxiety and fatigue with normalcy and hope.

Dr. Sharman once said, "Knowledge without judgement is just anxiety". Thanks Jeff!

Remember as you grow in knowledge to apply it for the benefit of that substatiated hope.

JM

[bennevisplace]

I know you're looking for mood-boosting ideas, but it seems to me that part of the problem could be your husband's despair with this fairly new treatment combination because of the "side effects" he is experiencing, when the medication may be innocent.

The forthcoming CT scan and consultation with the pulmonologist just might show that COVID is primarily to blame for the symptoms, even though your husband appeared to recover. Other members of this CLL Support group have reported symptom rebound, and there are many documented cases of COVID, with viral shedding, lasting for several months in immunocompromised patients. For blood cancer patients, COVID is known to further interfere with the immune system, see healthunlocked.com/cllsuppo... and ncbi.nlm.nih.gov/pmc/articl...

If I was the patient, before the consultation I would also take a PCR test to see if the virus is still present.

Best wishes.

[Pearlpink]

hi. My CLL made me exhausted but I’m feeling much brighter on V&O. Although there are some side effects with V & O they are much better than the side effects of CLL are. We are all different.

I must admit the effect of the pandemic got to me a few months ago having stuck out awful fatigue for years and changed into a different person. My personality has changed as a physical effect of the CLl - like a brain fog. More uninhibited. Bit tactless. Forgetful and slow to get jokes etc. I have found V&O (I’m half way through) has given me a lot of my personality back. I’m in the Uk, and I enrolled for counselling with Macmillan because if the change in my personality. It’s not something I ever thought i would benefit from previously but it has really really helped. Having someone impartial who I could tell everything did me a lot of good. It was wonderful. What was so useful was her telling me not to mourn the old me, and to embrace the way I am at the moment and do small things everyday that I enjoy. For me I’ve got someone who helps me with gardening - as I can’t do it, and I love just going outside each day and sitting surrounded by beautiful things.

Instead of fearing V@O I would try to embrace it. There will be some side effects but you meet wonderful people and I found that very helpful. And in a year the world will be a different place when treatment comes to an end! Good luck to both of you!

I found it very helpful to speak to the experienced counsellor who sees lots of people who get similar symptoms and who appreciated that my symptoms of fatigue, and change in personality were real and common. It gave me confidence back.