For those of you who were here when I dropped off the forum about the time I was found to be MRD, I was Cllady01 and found it difficult to re-enter with the username, so I am now Cllady25.
Since my V/O treatment was completed, I have been in MRD status with little change in my CLL profile. I believe I reported my cardiac condition which is a stiff left ventricle, my B/P spiking to 185/70, and the finding of blood level hypercalcemia sometimes very high, other times a bit lower--but still too high. It isn't CLL, so Hemo/Onc has done nothing.
When I saw my Endocrinologist and got her attention with a coughing spell and description of my heart, BP, and hypercalcemia, she ordered 10 vials of blood to rule-out pituitary problem, Tuberculosis. She also got a test of 1,25 dihydroxy vitamin D levels that showed them too high. I had a CT that showed a 4cm nodule in right upper lung.
I was referred to a Pulmonologist and in 3 mos. had PET Scan which showed a new 10cm nodule in right upper lung and a bright mediastinal lymph node. Biopsy was done last December and I have an appt. with Pulmo in March.
My wonderful Endocrinologist retired in December and I feel a bit wobbly with all the possibilities that could be. She suggested I most likely have Sarcoidosis---which is a tricky disease to pin down to type, cause and treatment--It effects various organs and which ones effected seems to depend on the "cause factor.
You can find a reference to a possible involvement of treatment Inhibitors in one of the types of Sarcoidosis--Lymphocytic Sarcoidosis. I do not have a definitive diagnosis. Time will tell--but I am beginning to want some information about the biopsy and was told I would get a call when the info was in Pulmonary possession. The labs that do the studies of biopsies are far and wide and it all takes time and after a while the wait takes a toll.
I am reading as much as I can to be a little less in the dark when someone tries to explain this to me.
I am so glad to be back here, but I have some more shopping to do in regard to this computer--it is intel (read AI) loaded and annoying because it is designed for working/group/networking etc. I need a lesser degree of what is supposed to be helpful.
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Cllady25
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thank you for the welcome back. It is good to be back.
It is good to see you are still in the game with all the unsure situations you have been through. You and Newdawn give me hope for my own battles that surely will be coming from this tangle of possible Sarcoidosis and/or another cancer from what I read in regard to the medistinal lymph node biopsy.
Sounds like you’ve had a challenging enough time trying to obtain a definitive diagnosis Cllady without the IT hassles! Great to see you back and sending best wishes going forward.
Thank you for the understanding of some overwhelming times I am having.
I have read some of your posts in regard to your own struggles which you have lived with for some time. I admire your strength and sense of humor as you handle your own health and often that of your son or your hubby--I also appreciate that he is your caretaker often.
I have not had the feelings of illness beyond the coughing and mucus trouble through all this, just the observation of changes through tests and scans.
I do have some inflammation (osteoarthritis) in fingers mostly, but nothing that has been debilitating. I am sure those times are coming given the time. 😏
And then there is all the upheaval that the country is experiencing--quality sleep is scarce. So I am fatigued from frustration of not knowing of several levels.
Symptoms of excessive vit D (hypercalcemia in your case) and mg deficiency are the same. Did they check your mg levels? Eric berg has quite nice videos about vit D if you are interested
Please be aware that Eric Berg, DC. "has made many therapeutic claims that were not supportable by reasonable scientfic or medical evidence." His advice should be approached with caution.
Eric berg is a businessman. But this not change the facts. I take everything he says with salt and track medical evidences on the subject. Having one unofficial claim does not make all his claims wrong.pubmed.ncbi.nlm.nih.gov/284...
It is not about totals or percentages in this case though, each time Dr. X makes a claim that is a new scenario. Tracking past failures or success' for that matter doesn't affect what following this next claim will do.
Combine that with the knowledge that these aren't experiments, but someone trying to influence others to behave in the way they promote (and as you stated this person is a business man) and one is wise to always hold that promoter as suspect.
Thank you for finding an independent reference and sharing that you "take everything he says with salt and track medical evidences on the subject". The primary reason for my concern about you mentioning Eric, is that, as is very common with those who have had chiropractic training, he has a strong stance against vaccinations, whereas CLL specialists strongly recommend the importance of keeping up to date with non-live vaccinations. healthunlocked.com/cllsuppo... Eric also sells magnesium + vitamin D supplements on his website. As you note, he's a businessman.
Sending you best wishes & light in the darkness of yet another dx. I'm sorry you're going thru this.
If we lived near one another, I'd gladly come over and remove as much bloatware as possible from your new computer. There are many websites with instructions, if you search "how to remove bloatware from an intel computer." Also "disable copilot."
Thank you for the best wishes and kind thoughts. I am doing alright--I just hate waiting (but not anxious to find out at the same time). So, any discomfort is from wobbliness.
I have the latest Intel iMac and it is not really suitable for my usage--too much on it for working and relating on a work network plus ai is everywhere and the setting up was not so bad, but has gone awry because I won't obey ai.
I can take it back with full refund and will do so after I get a printer and see if I can copy all I have found that will be valuable to have with the number of Docs I may be dealing with. Tomorrow, we will have a warmer day and I will venture out to trade in an old printer for a new one.
Did you get info on what O/V means to your clinic personnel ?
It all sounds stressful—not knowing the arcane details of possible medical diagnoses, or computer bloatware—really, all the things we don't seem to have agency over w/o extensive research & learning curves. It's a lot. I realize no one promised us a rose garden, but none of this was in the brochure either. Anyway, I'm holding you in my thoughts. I wish I had more to offer.
Thanks for asking re the OV question. Honestly, I feel like I've expended too much of ppl's time on this small thing. I try not to bug the clinic staff with small stuff.
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A hellish 2 months. Very confused about MRD measurements.
Diagnosed with Richters
MRD Negative in the blood and CR on MRI after 9 months from Imbruvica plus Venetoclax Clinical trial. So far so good... 
Progress update - Pirtobrutinib triple trial for treatment naive 
