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

Posted by joeeduffy @joeeduffy, Feb 22 9:01am

Me again.

An old friend of mine who is very into holistic therapies and such sent me an article about Rick Simpson Oil. Has anyone heard of or tried this?

https://www.webmd.com/cancer/rick-simpson-oil-for-cancer-overview

Just curious as we will do whatever we need to.

Thanks in advance.

Joee

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

rubles | @rubles | Mar 2 1:37pm

In reply to @loribmt "Hi @rubles! @kayabbott was spot on! I wanted to make sure you all found the Osteoporosis..." + (show)

I'm not with it today and barely understand the website here. No need to apologize. Thank you again and appreciate your help. Pamela

Lori, Volunteer Mentor | @loribmt | Mar 2 1:44pm

In reply to @rubles "I'm not with it today and barely understand the website here. No need to apologize. Thank..." + (show)

Hi Pamela. You’ll get the hang of using Connect in no time! Here’s a little tutorial that will be helpful. https://connect.mayoclinic.org/help-center/

There’s never pressure here…we want everyone to feel comfortable as though we’re just sitting around the kitchen table chatting away. So don’t hesitate to ask questions or give us a heads up if we can do something better. ☺️

gardeningjunkie | @gardeningjunkie | Mar 3 11:55am

In reply to @bochos "Well. I have been diagnosed with CLL. Mine is rather benign/slow as far as my white..." + (show)

gardeningjunkie | @gardeningjunkie | Mar 3 12:13pm

In reply to @bochos "Well. I have been diagnosed with CLL. Mine is rather benign/slow as far as my white..." + (show)

You're incorrect, some of us do have it spontaneously regress. I'm one of the 2%. I was smoldering for 10 years after my bone marrow biopsy confirmed CLL. My white counts were never terrible, never got higher than 20,000 my lymphocytes kept get getting higher also. Now 25 years later I have had normal normal white counts and normal lymphocytes for 10 years. No medical treatment ever given. Look up spontaneous regression. My oncologist/hematologist still insists I have my blood taken every year. It's rare, but it does happen. He's named it Pre-Leukemia. Stay positive and get outdoors and be active as much as you can. Someone suggested Green Tea, I drank that for 9 years with no obvious benefit. A friend recommended Muscadine Grape supplements, after that my counts started dropping within a year. Coincidence seems likely, but I feel obligated to mention this. All my blood counts are documented.

njhornung | @normahorn | Mar 3 12:51pm

I have CLL, not smoldering CLL, and my WBC was never above 17 that I know of. Actually, it is showing a slight downward trend while the lymphocytes show a slight upward trend.

I hate to break it to you but we are all terminal. No one lives forever. We will not die from the cll but we will die.

And like bochos, I keep my diagnosis divulged to only a few friends. I do not need phony sympathy nor well intentioned suggestions from people who have no idea what they are talking about.

Lori, Volunteer Mentor | @loribmt | Mar 23 1:13pm

In reply to @joeeduffy "Hi Lori! Thank you so much for thinking of Tim and I today. I decided to..." + (show)

@joeeduffy

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!!

Jump to this post

Hi Joee. Just had to check up on you and Tim to see how everything is going! Are you both feeling a little more confident now and getting back to normal?

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