As any one with CLL tried Adaptogenic's mushrooms for stress reduction?

[unairdefamille]

I tried everything, from meditation, to tapping to Canabis oil... I have been taking Acalabrutinib for one month and feel okay, but on edge and reactive to every little upset. Thanks for your input, my friends 🙏🏼

[cllady01 Former Volunteer]

Unairdefamille, The following past posts may be of help to you in dealing with your anxiety/stress while dealing with treatment for your CLL.

I sense you want to find something other than what a Dr. is most likely to recommend/prescribe, but the danger there is the same as with taking a prescribed medication without following the carefully researched and stated guidelines provided. You can get in trouble beyond what you sought the help for.

There is great value in finding a therapist for some talk therapy before putting anything in your body because of the myriad possibilities of contraindications, as long as your GP has assessed your particular stress/anxiety situation.

I hope you will contact your CLL Dr. and ask what might be helpful while on Acalabrutinib and if you find there is little help there, talking with your GP is a good way to get some valuable information and guidance for what might be helpful and can give you the assurance that the GP will be following up with you, to be sure all is going well.

I sense you want to find something other than what a Dr. is most likely to recommend/prescribe, but the danger there is the same as with taking a prescribed medication without following the carefully researched and stated guidelines provided. You can get in trouble beyond what you sought the help for.

Hoping you find in member's posts, a way to take care of your situation.

[unairdefamille in reply to cllady01]

Thank you. I just wondered if ANYONE in this large group had ever tried those supplements, For the last 2 years I've been functioning without a GP, she retired and no replacement has been found since ... My oncologist is wonderful, but strictly goes by the official medical protocols. I tend to learn a lot from people with CLL who have ventured outside of the box, while following precious doctor's orders -- this said, I appreciate your input. Best to you 😊

[cllady01 Former Volunteer]

Sorry, I forget to post the link to member's past posts ( you can find them in RELATED POSTS):

healthunlocked.com/cllsuppo...

x

[Eucalyptus22]

I haven't tried anything like mushrooms for anxiety but interested to know if your anxiety started when you started taking acalabrutinib? I ask because I have suffered with anxiety since starting the drug and was putting it down to covid and not having any antibodies. I was manic for the first month. Its been a physical thing with me as opposed to a mental state and the only way to deal with it has been exercise.

I'll be honest it was so bad at times I have taken the odd herbal tablet (valerian) and not told my CLL cancer nurse as my results did not seem to be affected. I also put essential oils in my diffuser and my consultant is happy with that. Lavender and Roman Chamomile are particularly effective.

I'm not advising you to do the same, but I do think being on this drug can cause anxiety and its horrible and if its caused by the drug then your CLL consultant should know and try to find some help for you.

[unairdefamille in reply to Eucalyptus22]

Thanks, I had anxiety since the moment I received the CLL diagnostic - but it was on and off. Since I started Acala - it's more like a jittery feeling of speed and scattered activity. More later, something just came up

[Pageboy]

I don’t know if this is your first treatment but Acalabrutinib is mine and for the first few weeks it had a psychological impact on me in so much that I kept thinking … this is it. I’ve started treatment. This little pill is keeping me alive. I am now reliant on something other than my own body to stay healthy. It’s a bit of a head flip. CLL is a stressful condition from the start of W&W. But it’s also one of the most researched and manageable so we are lucky in many ways. And if we’re happy to pop a ‘natural’ pill or pay a fortune for cannabis oil to keep stress at bay then one that keeps us alive isn’t so bad. I haven’t tried the mushrooms and you probably don’t want to hear it but if you don’t already, I think good old fashioned exercise is the best stress buster for those who can. Even a long walk everyday will help.

[LeoPa]

I have three book recommendations for you. No mushrooms no pills. As far as stress and worries are concerned many times it is just a question of mindset or a change of it. These books can help exactly with that.

Book

[LeoPa]

2.

Book

[LeoPa]

3.

Book

[Vlaminck]

I'd be wary of mushrooms because many have various effects on Bcells. If you take any, be sure and research that particular mushroom. I don't know if L-theanine is something you might consider, but it's known as an anti-anxiety supplement, as well as ashwagandha. Effects are very subtle, of course unlike medicine. I'd mention to onc about it first or do a lot of research on each searching it plus CLL plus ncbi to get a reputable article (e.g., theanine chronic CLL ncbi) Good luck. We are all anxious these days with the state of the world, the pandemic, etc., aside from the CLL.

[unairdefamille in reply to Vlaminck]

Yes I know, the problem is that my mood swings affect my husband, because he's has known me as a sweet, patient, and sympathetic person, and now, I'm turning into a controlling freak, jumping like a kangaroo every time there is a disagreement. It sounds more than anxiety, it's like I am possessed by some vicious gremlin, and then it goes away for some moments of peace, until the next upset. Forgive my ranting. I do hate it myself, that's why I wanted to know if I am alone with this issue. Bless you for trying to help. 😇🙏🏼all of you. You are very precious.

[Davidcara]

I would try to get some professional help; definitely would not do mushrooms. In the meantime, until you find a new GP, or some other type of support, maybe your oncologist could refer you, or prescribe something short term to help take the edge off. When I first started treatment I was a little anxious. My oncologist prescribed a low dose short term prescription of lorazepam, it really helped.