CancerCompass message board discussion started by YanaMom on 7/5/2008 http://www.cancercompass.com/message-board/message/all,25758,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ So we went for a consultation, did zillions of tests and saw the good doctor. He said the following:1. He wouldn't have treated mom (her doctor gave her vel-thal-dex and rev-dox-dex) at all- her myeloma was indolent at worst2. Now that she had been treated, the disease changes and treatment may be necessary for her to survive.  3. However just on the off-chance that the disease hasn't changed he is prepared to wait and monitor her blood monthly for 6 months.As for the doctor who treated her, I quote "these modern doctors...use the modern wonder drugs....without thinking of the consequences"If the disease did change, mom only has transplant (T3 protocol, whatever that is - still need to read carefully) as an option.To say that I have mixed feelings regarding the doctor who treated her is to say nothing.  Now, on the factual note: the UAMS MM Institute is absolutely fantastic, they do what they promise and really look after you. It is really scary to see dozens MM patients of different stages as some are not an optimistic sight but after a day or two everyone becomes friends and somehow people with ports, in wheelchairs and on pain medication stop causing paranoya (I am not being offensive, mind you, I am talking about never seeing that side of life). Mom also did a bone marrow gene array test which I need to read about but apparently it should help to quantify her disease. Overall, very positive impression, we are to go back there in January (hopefully not earlier, hopefully, hopefully).   YanaMom Sat, 05 Jul 2008 00:00:00 GMT Good Evening Yana;After reading your post I honestly don't know what words I can offer to comfort either of you. What an unbelievable twist of fate.I would ask you though if you can expound on the following comment the Dr. made:Now that she had been treated, the disease changes and treatment may be necessary for her to survive. I understand that any living organism is going to defend against something that is attacking it. But is the Dr. saying that left untreated the cancer would have lived unharmfully within her body? This sounds baffling to me.Take care;Kevin K. C. Mon, 07 Jul 2008 00:00:00 GMT  On 7/7/2008 K. C. wrote:Good Evening Yana;After reading your post I honestly don't know what words I can offer to comfort either of you. What an unbelievable twist of fate.I would ask you though if you can expound on the following comment the Dr. made:Now that she had been treated, the disease changes and treatment may be necessary for her to survive. I understand that any living organism is going to defend against something that is attacking it. But is the Dr. saying that left untreated the cancer would have lived unharmfully within her body? This sounds baffling to me.Take care;KevinNo. What he is saying, firstly,is that considering mom's past blood test history, her immune globulins were down for a few years before she was diagnosed - so she was likely to have it at least since 2004. Secondly, the doctor who treated her commited the sin of not monitoring her for at least a few months before treatment - at diagnosis mom had 15% compromised bone marrow, no lesions, nothing to indicate the disease was active. Basically she had an indolent version - the one that is not usually treated. She could have had it for another XXX years before MM shows its ugly head and she would need treatment. Now the rules may have changed, her M-spike is higher than before treatment and if monthly blood tests show an increase she is left only with a transplant as an option. YanaMom Tue, 08 Jul 2008 00:00:00 GMT Kevin,I believe you could compare this to something like taking steriods.  I've had to take them for years at a time for the lupus.  Your adrenals becomes dependent on the synthetic steriods and basically shut down.  It's why you have to wean off the steriods.  If I had surgery after going off of the steriods, I needed a booster of them so my blood pressure and heart wouldn't give out.  The same might be for treating MM.  The drugs are very toxic, as we all know, and they have probably done something to our system.I see Dr. Barlogie in two weeks and can ask him to explain again.  I can put this on my question list.LoisA LoisA Tue, 08 Jul 2008 00:00:00 GMT Good Evening Ladies;Thanks for explaining this to me. Sounds like she may of had smoldering MM? Would that be a safe answer?Take care;Kevin K. C. Tue, 08 Jul 2008 00:00:00 GMT  On 7/8/2008 K. C. wrote:Good Evening Ladies;Thanks for explaining this to me. Sounds like she may of had smoldering MM? Would that be a safe answer?Take care;Kevinabsolutely !! YanaMom Wed, 09 Jul 2008 00:00:00 GMT