CLL: How do you evaluate well-meaning tips from friends?

Hi @joeeduffy, I know you’re desperately seeking advice about your husband’s potential diagnosis of CLL. What I want to caution you about is falling for these quick fixes or snake oil salesmen promising cures! Honestly, if it was this easy to cure cancer with a hemp oil or for me, a well meaning friend told me to drink a quart of raw asparagus juice daily…wow, there would be no more cancer! But it doesn’t work that way. While there is some validity to holistic/naturopathy supplements, please don’t fall victim to these miracle cures. Some of these treatments can be lethal, cause very serious side effects or interfere with medications that are working for your husband. Most are not regulated or meet any specific standards of quality or potency.

A number of members and myself have already given you a ton of valuable, credible information about CLL. Your husband has most likely had this blood cancer for quite some time already. So basically his life hasn’t changed except he has now been presented with blood tests that show he has some differences in values that need further testing to get a firm diagnosis. The positive is that he’s also decided to make dietary changes and stop smoking. Those two things are hugely important to overall health. ☺️

CLL, as we’ve told you, is generally very slow to develop. IF and WHEN treatment is necessary, which may not be for many years, statistically it is one of the most successfully treated blood cancers with good longevity. It’s all in previous information that I gave you in prior comments so I hope you take the time to read those replies over again. I don’t mean to sound patronizing…but please, just take a breath and let it out slowly. You are both going to get through this and realize that life may not change much.

Thanks Lori.

Some days are just so much harder than others as I am sure everyone knows. Idle hands are the devils workshop or whatever they say. My business is a little slow right now and that is never a good thing for me.

And, once you put that in writing, I feel like an idiot!

I started somewhat of a "Workbook" with all of the links and recommendations from you and others here and have been referring back to it frequently. I appreciate all of your time and what you do and will seriously try not to inundate this feed with things that may sound silly to even think of.

Oh my goodness Joee. You are not an idiot and you’re not inundating this feed with silly things! This is a huge life event for your husband and you!! Knowledge is power and asking is a way to learn what you need to help your husband!
I’m just wanting to make sure you don’t get lured down some rabbit hole that’s going to take you in directions where you don’t need to go! Ok? ☺️ I have your back…WE have your back so don’t hesitate to ask anything.

Oh you said it though, with idle hands are the devil’s workshop! Distractions are important. I hope business picks up but if not, do you have hobbies and other things that keep you occupied?

Someone posted here over a year ago something that reassured me and my family when I shared it with them. The person has had CLL for something like 30 years. A few times, the WBC would get too high and, with treatment, it would be knocked back down. And life would go on.

I am one of those people who has had CLL for almost 28 years. In the beginning my WC would get high (80+) about every 3 years and an oral chemo would knock it back to normal. Since 2015 my count has been lower (30-45) and is considered stable. Yes, life does go on!

@loribmt Again I’ve found your response to @joeeduffy to be very positive and encouraging to me. When I was diagnosed in November 2023, I basically put my life on hold. I now try to move on and live my day to day life as if I didn’t have this disease and pray that I will never need treatments. 🙏

Good morning, @marynoelle. Have you ever been hiking along a trail and find a snake lying in the sun on the path in front of you? For me it was an alligator! No kidding…anyway, I digress.
Our first instinct is usually to freeze in place while our brain quickly assesses what action to take. Flight, fight or freeze! We need a plan to go forward.

I think it’s the same thing when we hear ‘bad news’ from our doctor. We initially mentally freeze in place because we don’t know what’s ahead of us and that fear of the unknown is so powerful. When we learn the facts and arm ourselves with knowledge, it helps us get a plan together to move forward.
Even without a diagnosis of a cancer, we humans only have so much time on the planet. It’s a shame to waste any of the time we have worrying about ‘what if’… I’m guilty of doing that in my younger years, always ‘fearing the worst’ without even knowing what the worst could be! The mind is a powerful story teller! LOL. When I actually did get an aggressive cancer, it was dealt with and I moved on. Now I fear very little because I know if something comes up, I’ll deal with that too. But I’m not going to dwell on worrying about what I don’t know and I’m happy to see you’ve adopted this philosophy too! IF you need treatment in the future then you’ll deal with that at the time. But to worry about it years ahead of time would be robbing you of precious time of enjoying the life you do have.

By the way, with the alligator, it was flight!! 😂 I may fight cancer but I’m not stupid…

@loribmt, The snake/alligator very good analogy. I will keep that story in mind whenever I start to worry. It would be flight for me also …. 😂

I’ve been dealt with a double whammy! Last week my husband was diagnosed with Prostate cancer ( Gleason 7). Urologist said it’s on the low end of the 7. Had bone scan done on Friday, February 22. CT scan scheduled for Thursday, February 29 to make sure that it is contained within the prostate. It never rains but it pours. My worry now has turned to him!! So far we are both remaining positive. 💕

Oh gosh, @marynoelle. That’s news neither of you needed right now. This isn’t an area of treatment I’m familar with except for a number of friends (including my former boss) who have gone through prostate cancer and surgery. These 3 guys have done really well with no residual issues. So I know that there is always hope for the best with the new technologies that have been developed over the years.

We do have a lively prostrate discussion group that you may wish to visit after you find out more about your husband’s diagnosis. Reading too much now wouldn’t be helpful because many stories may not even relate to him at this time. 😉
Wishing you and your husband only good news with his upcoming CT. Will you let me know what you find out?
Sending positive thoughts and hugs your way. Lori

@loribmt Definitely not the news we wanted to hear. It has been a difficult time.

His Urologist is very positive. My Husband is 74. Apparently they don’t perform surgery after age 65 as the outcome of surgery or treatments is no different. Why, I don’t know. He will be referred to a Radiologist to determine the course of treatment. Definitely will be radiation.

I’m praying for good news and that all goes well.

I will try to get some information from this site when we know what’s going on . I will let you know how things go.

Thanks so much for your encouragement! 💕