Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Thank you, Andy,Kurt and for your inspiring posts. I'll do my best. My issue, since you asked, is that I was dx 3 years ago with Stage 4 and responded well to my first (and only) treatment of fludarabine and ritux. I feel the nodes returning slightly, but the blood is still holding -- which is my real concern given my previous experience. I feel pretty storngly in my bones that for me, the blood levels are more telling than the scans. You are right: my oncologist can feel the nodes. Thanks and many blessings for your good health! Marietta html><div><BLOCKQUOTE dir=ltr style= " MARGIN-RIGHT: 0px " > <P align=center><FONT face= " Verdana, Geneva, Arial, Sans-serif " color=#33ccff><EM><STRONG>Marietta Brill <BR></STRONG>cell: 718-938-8712 <BR></EM></FONT></P></BLOCKQUOTE></div></html> ----Original Message Follows---- From: " Gach " <unclewolf@...> Reply- < > Subject: Re: Scans Date: Thu, 7 Sep 2006 16:59:50 -0700 (Pacific Daylight Time) Thanks for your kind words, Kurt. We're of one mind on this. People who blindly follow doctor's orders shrink their responsibility for their own health. Ideally, physician and patient should form a team where the physician is the advisor and the patient is the decider. Of course, one needs to do his or her homework for this to work. Being a competent patient is a job no less demanding than being a competent physician.. Andy -- Re: Scans Andy, You are a perfect example of how you have to stand your ground as a patient and protect yourself. There just isn't any significant difference between the size of lymph nodes or tumors that can't be measured either by Ultra Sound or MRI Scan. The only other reason for a CT Scan is simply convenience for the doctor, insurance co and the office staff and perhaps timing. However there is no hurry in 99.9% of all cases that would require an immediate CT Scan. If a person were that sick, then of course you would take a CT-Scan, but not until. There is nothing more definitive than an MRI scan period, end of story! The only difference is that it's a still set of thousands of pictures whereas a CT Scan is a moving picture. Again, simply convenience and easy to view. Again, at what cost? The patient is the one paying.........in every way you can imagine. The doctors stand behind the radiation screen and go home at night to dinner free from any harm that comes our way. We are the recipients, we also have the final word as to what we will or will not do. Bottom line is that we want the docs and the techs to work a little or even a lot harder to read our results, thereby protecting us from possible future harm. We must all be like Andy and stand up for ourselves. Good luck to all, Kurt Original message from Gach unclewolf@... Marietta, You don't give any particulars about the progress of your CLL/SLL, but this doesn't sound right! What's the rational for 8 CT scans and more scheduled? How on earth is that going to make you keep " on top of things? " How often have you been getting the CT scans and what do they do for you? << faint_grain.jpg >> << imstp_chubbi_en_upgrade.gif >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 It has been very interesting reading all the post on scans. I had one at diagnose 4 years ago, that showed I had nodes all over my lymphatic system. I have not felt the need for any more, now even after treatment I got plenty of them on neck and underarms and I am sure maybe in many other places, but all very small, so I think living with them is best than having a CT scan and what the scan might bring. I just had my blood results from this week, first time I had a month gap since I started treatment in January. The counts are ok, Hb up to 13.1, highest it has ever been even at diagnosed, apart from platelets at 96 everything else is good, the nodes are there but I do not think they affect anything, if they were really large and affected any internal organs, then it might be different issue and I would consider to see what was happening, otherwise, I personally do not think a scan is needed. regards Chonette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 I think you best time and money would be to go to Mayo if spiro fails or you feel uncomfortable with it. Just recall that this is not always simple surgery and the results are not 100% more like 60% in the long run. On Mar 27, 2008, at 8:59 PM, Valarie wrote: > I really don't trust much anymore. I was sent for a sestimibi scan of > the > parathyroids. The technician and I could see the one that had taken > up the > medium. We could see the saliva glands that had absorbed. The > radiologist > said there was no parathyroid adenoma. I'm glad I didn't stop there - > I had > seen it with my own eyes! Surgery removed the offending one that was > located precisely as shown on the scan . The surgeon found two others > that > were normal and couldn't find the fourth one. I have one floating > around. > > Somewhere, I have *.jpg pics of the parathyroid adenoma. I sent the > pics to > Dr. Norman in Tampa. He said they were of such poor quality that he'd > have > to re-do them (probably why the radiologist couldn't read them), but > said > they looked probable for an adenoma. > > I'm thinking seriously about going to Mayo. I hesitate to have > another CT > here. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim > > CT has better discrimination. They probably were not looking. This is > the reason that when you send an imaging request you need to be sure > you mention that the patient has high blood pressure and low K. > > On Mar 27, 2008, at 7:26 PM, a Hall wrote: > > > Val, > > For what it's worth, I had a CT scan of the abdomen > > done that was read as normal. Three months later I > > had an MRI done that showed small bilateral adrenal > > adenomas. The CT scan was done for something else so > > maybe they weren't focusing on the adrenals and missed > > them. Or perhaps some adenomas show up better on MRI, > > I don't know. > > > > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 I know. I am well aware of the risks and the success/failure probabilities. I could get a stellar CT here or I could get another like the parathyroid scan. At least I would be comfortable with Mayo practices. I haven't made any decisions. I want to work with spiro some more. I'm only on 50 mg and I know she won't raise it until I get a K check (next Thursday). I've done pretty well today (with no Ativan) and did some exercise. I could do some lunges/3 lb weights without terrible leg weakness. Caught up on some book work. Then I had dinner of 4 oz buffalo (60 mg Na), 1/2 C dried corn with butter (30 mg Na from the low salt website), spinach, yellow pepper, tomatoes, and about 150 mg Na in the dressing (too much, I know). A short time later, I had the familiar gripping anxiety. All I ate all day was 1.5 banana, 1 sm LS V-8, a green drink, 1/2 scoop protein powder (30 mg Na), 6 pcs dried fruit (5 mg Na). I'm on my fourth day off Synthroid. I'm thinking it is contributing to anxiety. Haven't felt anything negative but I'm 2 lbs up from a few days ago. Ankle edema is decreased a little. Sorry I'm talking your ears off. Just delete me if you're tired. I am so grateful to so many here. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim I think you best time and money would be to go to Mayo if spiro fails or you feel uncomfortable with it. Just recall that this is not always simple surgery and the results are not 100% more like 60% in the long run. Quote Link to comment Share on other sites More sharing options...
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