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

Hi!
I have a friend, who is well meaning, but keeps sending me the untested cures for cancer. I thank him and then move on. I am not going down any rabbit holes. Our minds are so overwhelmed when we get the cancer diagnosis. Navigating treatment options and further diagnosis adds to the stress. Just ignore the rest.

Also have had a chronic cancer (thrombocythemia) for 15 years, and it is amazing how everybody you know turns into a medical expert with free advice to offer.

It helps to have some stock responses to well-meaning advice. My go-to is, "Thanks, but I have a great doctor and a lot of faith in her treatment plan. It's a complicated and serious disease, and I don't want to mess with experimental stuff."

For persistent people, I've might say, "So would this help slow bone marrow fibrosis or reduce the formation of abnormal megakaryocytes? Does it prevent erythromelalgia, which, as you know, is a really hard to treat side effect?" Throwing around some specific info may drive home to these folks how uninformed they are.

Best of luck, friends!

Yes, I’ve heard of Rick Simpson oil and know a few people who have used it.

Reminder yourself that not every doc can know everything about everything. I caution people to work with a naturopathic oncologist. While there are alternative treatments to some conditions, only a doc trained in these modalities can tell you what is a good option for a particular condition.

Suggest you do an online search for a naturopathic oncologist. At the very least, you’ll gain peace of mind. Mine is in Michigan and does virtual appointments. He also earned a Fellowship from American Board of Naturopathic Oncology, sits on a Board of Directors and gained experience at Cancer Tx Centers of America.

Like others have said, use caution where you spend your money. And use that same caution where you spend your time and efforts. For me, it was the best decision, but I was willing to make the effort for something that was just as likely to work as traditional care. That’s why it’s so important to work with a trained professional.

Best wishes,
Sherry

Good morning, Joee. I know this is the big day for Tim to meet with the hematologist. I know you’re nervous about this appointment, but remember, this is a good thing. You’ve been waiting for answers quite a while so today should bring some resolution.
You have quite a lot of us concerned about Tim (and you!) so we’ll be here to listen after the appointment as well. Don’t forget your notebook! ☺️ Wishing only good news today! Hugs

Hi Lori!

Thank you so much for thinking of Tim and I today. I decided to go to start my day a little later as Tim's Dr. was doing our virtual appointment at 8:30 and good thing because he called at 7:45.

He was very happy with Tim's re-test blood work. We are at what he says is right between level zero and level one with the three lymph nodes being slightly above normal. His CT scans of his neck were negative and all of his orgams (kidney, liver, pancreas, throat, etc.) were all normal. He said we are at a 'watchful waiting' as most are, no need for long term drugs and we could go possibly 5, 10, 20 years without any treatment.

His ANA was positive and wants us to see a Rhuematologist and he does not have a P53 marker (I believe that how he phrased it) and said that was very good. His retest showed that his B12 levels were actually all good and that all platelets were negative.

He didn't mention anything about the bone marrow test though and I neglected to ask about that, but I would think that if something was wrong or alarming it would have been addressed? It was hard to go over so much in such a short time.

But, he also said to be sure that Tim gets his vaccinations (flu, shingles, COVID & RSV but I read that you get that when you turn 60?). Keep up the no smoking and start exercising and eating heart healthy.

He did tell me another interesting tidbit and that was when I asked him for a referral for a new PCP. He said that he does not have one at this time that is taking new patients! Apparently, there are not many students out there that are wanting to go into the Primary Care arena and are gearing more toward specific focuses (obgyns, hemotology, oncology, etc.) and there is a shortage of PCPs in the country. So, we are going to try and get him into the practice I go to as my Dr. isn't accepting new patients but the others are.

Just a little shocked at that. Who knew?

I have to follow up with his assistant as she scheduled him for his 6 month blood work and we should be good.

I was hoping for the best, scared for the worst and I SOOO appreciate all of you keeping me from the ledge! I will be keeping up with everything and thinking of everyone and praying for everyones health and well being.

Oh, when I asked about if we need to worry about the WBC counts going up and if he would need medication/treatment or anything that that wasn't anything he felt we needed and when the time comes that there will most likely be even better options for all of us over the next five years. Options that will be better and have less side effects.

Sounds promising.

I seriously love everyone here, especially you Lori. Thank you so much for all that you do. Remembering dates and times and people and being so knowledgeable and helpful to everyone. It is incredibly appreciated!!

Hi Joee!! I’m doing my happy dance 💃 for you and Tim! Pfhew, huh?!! This was the best news and now you can both exhale! And, start enjoying your lives again. I think time stood still for the past couple of months.
The doctor’s suggestion of no smoking, eating healthy and exercising certainly are the best goals right now for healthy life ahead. I’m so relieved for both of you! Keep in touch, ok? 😉

Well.
I have been diagnosed with CLL. Mine is rather benign/slow as far as my white blood cell count is concerned. I am 75 and things start to happen as one get older. No treatment so far. But “it is what it is”. I just deal with it (for some people that is easier said than done). Listening to one’s friends expressing themselves about one’s condition is well intentioned but in my opinion serves no useful purpose that’s why I keep my CLL close to my vest. I told my Hemotologist that I want square business about my CLL no sugarcoating. Friends are well intentioned but dam near all are not doctors. We are all terminal and one should keep that in mind. Anyway, that’s how I deal with CLL be that is it may.

Hi @bochos. We can sure get a mixed bag of unsolicited advice when we get diagnosed with an illness. I had my share too. I chose to keep my issues pretty close to my vest as well, but news trickled out and then the phone calls, emails and texts began inundating me. Finally had to put my phone on ‘do not disturb’ and my husband and daughter fielded the surefire, miracle cures for my cancer! 😅
It’s great to hear you’re doing well with your CLL and are doing your best to keep control of well meaning input. We can be ‘people of age’ but our health issues don’t have to be the main topics of conversation! I have too much other stuff going on…how about you?

This may be off topic but I can't find any discussion group that fits. I want advice on osteoporosis treatments. I was diagnosed with osteoporosis 2 years ago and have been taking Prolia ever since. 2 weeks ago I fell and broke my arm. Minimal displaced fracture of distal radius. Ortho told me to stop Prolia and casted my arm. I need new treatment for osteoporosis. My friend said she took Reclast for two years and her recent Dexa scan now shows osteopenia. Big improvement! What experience has everyone else had with this?

Hi @catherine1290. We have quite a lively Osteoporosis Support group with discussions about many of the recommended bone replacement supplements, dexa scans, side effects and success stories.
Here is a link to that group: https://connect.mayoclinic.org/group/osteoporosis/

I’m so sorry to hear about your recent fracture. I hope everything mends quickly! How long will you need to wear the cast?