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

Discussion
Comment receiving replies
@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


Replies to "Hi Lori! Thank you so much for thinking of Tim and I today. I decided to..."

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? 😉

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?