Anytime, Tina. I am sincerely glad to be able to help you.
Thank you for writing what you wrote. You just made my day. When I think of quitting doing this, I'll remember what you said. Then I won't quit :)
Yes, make sure to let me know how the CT report goes. I'm sure it will be fine. Take care.
Oh boy, the website system altered part of my answer. So let me try again:
The "<" means "less than".
If it points in the other direction, then it means "greater than".
Overall, yours is only slightly higher, so there is only slight reason to worry about it. Similarly, e.g., if you said you had a temperature of 98.7 or 98.8.
Since yours is only slightly high, most of those causes in the list I posted above wouldn't apply. I'm just pointing out that there are many things that can make LDH go high.
My guess is that your next LDH test will be normal. But if it's still high, that still doesn't mean it's cancer. Also, cancer is not the most likely among all the possibilities.
Tina, that is still just a little high. The "".
In advanced lymphoma, LDH can go into the thousands.
"Serum LDH level was highly elevated (3441 U/l)."
Tell you what, though... if you have another LDH test in a month or two, and it is still a little bit high, then get back to me, okay? We can figure out what condition might be causing that. It might even be a medication.
There are many lists of causes. and they are not the same on every site. Here's one such list:
What Abnormal Results Mean
A higher-than-normal level may indicate:
Blood flow deficiency (ischemia)
Leukemia or lymphoma
Liver disease (for example, hepatitis)
Low blood pressure
Muscle weakness and loss of muscle tissue (muscular dystrophy)
New abnormal tissue formation (usually cancer)
Hi, Tina. There's nothing for you to worry about. Other things besides cancer can make LDH go high. For example a minor infection. Even working out too hard or taking too much vitamin C. It's also true that it's only a little bit high. No doctor would be concerned about cancer here.
How high is high? Let's imagine that normal was 220 to 229. Then 239 would be pretty high. But if normal is really around 129 to 229, then 239 is only a little bit high. See the difference?
Btw, I've been sometimes seeing in the news that some famous women have had their implants removed and then they felt much better. Danica Patrick is one, from a few months ago. So you were ahead of your time. Back when this started 3 years ago, it wasn't known so well. But now, most docs should be aware.
I hope your family problems get straightened out soon. You need stress-free relaxation from time to time to be healthy :) If the stressful situations won't end, then at least try to figure out some ways to escape the feelings of tension, at least for a little while. Be good to yourself, Tina.
"all cysts grow over time"
should say: all LIVER cysts grow over time
I wouldn't worry at this point, Tina.
Hi, Tina. This is really not my field, but I'll try.
First off, it's known that all cysts grow over time, so growing does not mean it's a cancer.
A cyst means it's a fluid filled sac. An ultrasound gives more info about what it is like inside in detail, more so than does a CT.
"did the doctor and oncologist both miss the liver cysts in the last two CT scans?"
"or did they not think it was a concern?"
Probably true. The vast majority of liver cysts are benign. Some people are even born with them. Also, you do not have any symptoms such as pain in that area. So if it is benign, they still wouldn't treat it (with surgery) no matter how big.
Can you post the exact language in the ultrasound report? Because of your long history of unusual inflammatory effects, I would guess that this is just another one of those - and it's not cancer.
If the ultrasound report says that it is just a plain, simple cyst then that's what you want to hear.
The ultrasound of the heart only happened to see the very top of the liver. Maybe they merely want to see if there are other cysts in the other parts of the liver. I don't think anyone suspects cancer, they probably just want to rule it out for sure.
Always glad to be of help, Tina. No one knows absolutely the answers to your questions, as they relate to any individual rather than group averages. But the news will everyday talk about people who say they know the answers absolutely.
There's been a lot of fear mongering, too, that caused a lot of needless anxiety in a lot of people; don't let that get to you.
I'm confident that your upcoming scan will be good, there's no reason to think otherwise. You know, you were kind of a trailblazer in the knowledge that implants can cause widespread immune reactions. That was when lots of doctors and doctors' groups said it wasn't true, but your experience proved it was true --- and you did great after the removal. Just as you'll most probably do great after this virus.
Hi again, Tina. Your highly reactive immune system could mean you defeated Covid more quickly and easily than the average person. Being highly reactive means you had the bad effects from the implants when the average person didn't, but it also can mean that you defeat infections better than average people.
"is it still building protection to so that my symptoms are milder?"
Yes. I'd say that the vaccine probably gave your immune system a jump start in fighting the virus.
"I am wondering if I have surpassed the worse of it being day 5..."
That could very well be true. It does seem to be true, as you say, from how the cough got better. But you have to live through it some more to know for sure, and just be aware of changes in symptoms without being too worried. You have good reason to be optimistic, Tina, just like way back when you had the upcoming CT and the results then turned out to be very good for you.
"My cough has subsided alot, but that could be because of the antibiotics..."
It's long been known that zithromax is also an anti-inflammatory. Anti-inflammatory is what you want, so your highly reactive immune system doesn't get carried away.
"I do however have shortness of breath today, but I am thinking that could be anxiety"
Probably true. If you are okay breathing when walking up steps, then you probably don't have any fluid in your lungs.
I'll also throw this in, at the risk of complicating things too much: just as you maybe didn't ever really have CLL, it might be true that your positive test for Covid was a "false positive".
I don't think you are "immuno compromised", I think the opposite: you are highly immuno reactive. You are not typical, as always, and the nurses won't understand that :)
I'd want to be most aware of how the lungs are doing.
Write again any time, I'm always glad to be of help. And please let me know when you are feeling tip top :)
Yes, Tina, great news for you once again. You can happily relax even more now.
However, always remember that your system reacts in ways that are unusual. Specifically, I mean your *immune* system; and the immune system can do a large variety of mysterious things. Always stress that with any doc that you see for any reason. Your cancer scare was because of your unusual immune system reacting to the silicone implants. My guess is that your heart symptoms are probably also from your immune system. It's best for us to start by wondering if everything has the one cause.
"I am thinking if it was my esophagus it would have showed up on CT..."
Nope, and not necessarily show up even with using an endoscope that looks at the esophagus from inside. E.g., there is a condition called eosinophilic esophagitis (say that fast three times). That gets detected only by an endoscope that also has an attachment to take biopsy samples. Everything can look normal with a scope or with a CT or MRI or ultrasound scan, but only a biopsy would find immune cells called eosinophils. (But if the esophagus is really really bad after years, the damage can be seen visually.)
The biopsy involves taking tiny snips, or else dragging a sort of brush across the surface. Then the pathologist uses a microscope to look for eosinophils.
There shouldn't be eosinophils there, but if they are there then they might be reacting to something you eat or drink. You can keep a food diary, and correlate that with any symptoms esp nausea. Or you can try various 'elimination diets'. I'd ask for the biopsy, and try the other approaches while you wait. There are some meds for that, which relate to immune suppression.
"I am hoping to get through the heart issues as I never feel the best anymore."
Immune system chemicals can make a person feel bad. E.g., when a person has the flu, all the symptoms are from immune chemicals, not from the actual virus. You can say that you are feeling 'malaise', right?
"I have had throbbing in my upper neck to upper chest bone (above breast area)"
Do you mean that it is to one side, or that it is along the vertical centerline? This is the most important question for the moment.
I'd ask the doc if it's ok to stop that. It isn't helping, but suppressing stomach acid constantly can have bad effects over time.
Many many people with mystery immune conditions are told that "it's all in your head" and wrongly given antidepressants or tranquilizers.
"I am not sure if I can direct these questions to a specific forum"
Yes, to this forum right here :)
Thanks for the update, Tina!
"would that be an indication that all the nodes in the body would be normal or small in size?"
It sure seems like they should all be behaving the same, yes. If you could have an ultrasound to see the fatty hilum on what was the biggest one, that should settle your nerves immediately. Maybe even your primary doc could do that in their office. (But a CT shouldn't be able to see the hilum unless contrast is used.)
"everything he has seen with my case has been very different"
Yep, and that turns out to be good :)
Tina, I would look at the upcoming CT as a way of hearing that "hooray, everything looks good!"
"would it be the lymphocytes that would be elevated?"
Yes, they would in CLL.
"any signs showing up in my blood test results indicating there is CLL?"
No, and even your "globulins" are normal, whereas they can be *low* for CLL, and probably also for SLL.
"have you ever heard of the CLL almost completely disappearing 8 months after the removal of the implants"
No, but it seems very curious. It's a medical mystery. It seems enough for an oncologist to perhaps possibly re-evaluate everything that happened before.
The implants were apparently stimulating the immune system to react. Is removing that stimulation enough to make a cancer regress? I don't know, but I think that would happen very rarely, if ever; but otherwise maybe it means there never was actual CLL/SLL, just something that looked like it.
Did you ever talk to any doc about Castleman's mimicking CLL/SLL? I seem to remember that your primary doc was my favorite.
Hi, Tina. Yes, I do remember you. It's very good to hear that removal of the implants has let the nodes go back down to normal. That's wonderful news. Hopefully, your overall health has improved also.
I wouldn't worry about the WBC. First off, it's only slightly high. Also, it might be up a little, just because of stress. Think of it this way: let's say you are in the woods and you see a bear. The stress reaction involves putting more immune cells into circulation, in case the person gets wounded. That same reaction can occur even if there is no physical danger. Also, you'd said in the past that your WBC is usually a little high. Overall, there is no reason at all to think of any blood cancer.
As for the headaches? I don't know, except that if they are not severe, that might be from stress, too. Nobody can blame you for being very stressed, after everything you've been through.
Since your enlarged nodes and everything associated with that turned out to not be from any spreading of cancer, there is even less reason to think that you might have a brain tumor. In fact, having a very reactive immune system can actually be protective against any future cancer.
And thanks for the compliments :) Write again anytime if you have any other concerns, it's not a bother at all. I think you'll be very happy with the results of your upcoming CT.
I believe that CLL is known for only rarely going outside of nodes. I'd say that it's important to be aware of anything that seems suspicious, but then to not get carried away with that and drive yourself ragged. Sorry, I know that must be very difficult to do.
However, you did have the experience with the bladder that was alarming, but turned out to be a false alarm. I hope you don't have any more alarming things; but if they unfortunately do come then there is reason to believe that they, too, can be false alarms.
When my father had lymphoma, I always tried to learn as much as possible about the range of outcomes that were reasonable to expect. There's always a range of what might happen. Then I chose to deliberately believe the best out of those.
Tina, your thinking is excellent on every point, including about the unusual location of the first node. Bravo to you.
I did read the link you posted. The more that I read about this, the more I'm personally convinced that it is all very true in your case. There's possibly even a small chance that once the implants are removed, the nodes might shrink somewhat because there's not that constant inflammatory stimulus anymore. Your primary doctor seems to be a very good one. Very, very good.
I'm glad you had a great, informative ultrasound tech that gave the good news right then. Is it possible that you can get the report on the genetic testing directly to yourself - so that you don't have to wait for the appt with the onco to know the results?
"I had a colonscopy last month..."
Tina, I very much recommend that you refuse any more medical appointments that are not very necessary at this time.
You need to shield yourself and get pampered. Please shield yourself as much as possible from stress, get others to do things for you. This is very important for your physical health.
Tina, did any doc mention "interstitial cystitis"? That would be inflammation of the bladder.
Sorry to say, but the extreme stress that just won't stop might be what's causing causing flareups. Other than that, I don't know - except maybe to recommend trying to be as anti-inflammatory as possible.
Your immune system reacting to the silicone might be a factor. I don't know how long after the removal that would stop being a factor.
I wouldn't guess at all that this is CLL in the bladder... which maybe would result in pronounced and visible red in the urine. I think, though, that inflammation does commonly result in microscopic amounts. Don't hesitate to post again whenever you might feel like it. I wish you the best, you certainly deserve a break.
..and don't think that you are being a bother :)
Hi again, Tina. This looks very much like what is called 'sterile inflammation' that mimics a UTI. That brings us back to an overactive immune system. That does therefor tend a little to supporting the idea of having Castleman's - a mystery immune condition..
I wouldn't take any more antibiotics unless there is a positive test for infection first. Too much antibiotics over and over can be harmful.
Do you have intestinal problems? That would contribute.
When will your genetic tests be back?
Oh no, that was some terribly bad luck, Tina. I can't imagine why the GP talked that way - completely out of line and causing so much needless anguish. What he was apparently referring to is called a "stem cell transplant" - that is the most extreme treatment and there is no reason to think that would be called for right off the bat. I'd be very leery of what he says about cancer from now on.
Terrible luck again with the 1.5 hour wait, that must have been awful to endure given the prior experience with the GP. At least your luck finally turned good, with being told by the onco that you would be only put on watch-and-wait, with no immediate treatment needed. We had discussed that as being the best thing that an SLL patient could hear.
Also predicted was that the onco would say that you have SLL. If I understand you correctly, with all the stress, you didn't really have the opportunity to ask about Castleman's. After a week or so to put this stress away, you might email to him and put forward the case about Castleman's. Or... wait a minute, how about we just wait for the results of the genetic testing? If no SLL gene mutations are found, only *then* is the time to bring up Castleman's. There is still some hope for that. But now is the time to just coast and to relax if you can. When you do think about this, you can hope that the onco will say, "wow, this really is a strange case... there were no SLL mutations found". Maybe that's not likely, but it is possible.
You are a very reactive person and to my mind that comes along with a very reactive immune system. (There wasn't really time to ask about if you've had a long personal history, or family history, of unusual immune conditions.) So yes, removing the silicone is a great idea. You might find that you feel much better all around physically and emotionally, starting in a very short time. If so, that means you were indeed having some bad reaction and that would include inflammation.
I'm sorry to hear you had such a rough time; but very glad that it turned out pretty well, all things considered. I'll certainly be wanting to hear the updates. Take good care of yourself.
Well, I don't claim to be an expert on SLL but I think all this info will help you tomorrow. The onco might be surprised at how much you know - some docs appreciate that :)
Yes, after hearing all your info and history, I think you have every reason to hope that this is not really SLL. It is very strange, and you had a sense about that all along. So you can rightfully give yourself kudos for that.
Needle biopsies can give false negatives, if by chance the bad spots are missed. But they did take a lot of samples so that's less likely.
If you have the mental energy, you can reread this thread to coalesce the knowledge. There was a lot in just two days. Best of luck to you. I will certainly be waiting to hear what happened.
If the onco were to say: let's start the harsh type of chemo ASAP, I'd be surprised and ask why we don't test first to see how aggressive it is. I'd want to think that over for sure.
The *loss* of the fatty hilum does not necessarily mean cancer, because other conditions can cause loss of the hilum. But the presence of the hilum almost always means not-cancer, unless as mentioned when the cancer is still very new and small. That's because the cancer cells replace the normal cells in the hilum. The fatty hilum would mainly be mentioned on ultrasound reports.
"... what they found on the preliminary... is that always more or less 100% accurate in your opinion?"
What they found about CD5+ etc would not be in error (unless they mixed you up with somebody else's tests). But the conclusion might be in error or be uncertain. Also, what was seen with the staining+microscope could be uncertain as to what it means; it might not point clearly one way or the other, like the GP says.
The onc might say you have atypical lymphoid hyperplasia, let's wait and see if it changes. Or might say: let's do genetic tests to look for cell mutations that define SLL -- you should definitely want that done. The onco might say: let's schedule another CT scan in the future to see if the nodes continue to grow or not.
I didn't find anything definitive about the CD23, sorry. Overall that's up in the air.
Good luck tomorrow, Tina! You have a great attitude.
If the onco thinks for now it is SLL, they might want to do some tests to see how slow or fast it will behave... prognostic markers.