I don't have such a difficult experience with doctors, but for what it's worth, here goes. As some of you know, I live in Italy, where I pay nothing for my medical care. The national healthcare system works pretty well. I have excellent doctors (my GP is fantastic), and can say I have been very lucky compared to many others (Mary, e.g.). My former hematologist (who retired in August 2006) was from the "old school," where patients are not supposed to be frightened (read: patients are not to be told anything negative). He always told me that things were going very well, not to worry. A very nice man, but he drove me nuts at times. By November of 2005 I was sick of being treated like a child. So I told him, "no, things are NOT going well, and we both know it." My paraprotein was at the SM-MM limit by then. He was taken aback, but finally admitted that I certainly had done my research and no, things were not peachy. I was headed for MM. Well, at least I had the truth! When I approached him in January 2006 with the MD Anderson curcumin studies, he was clearly skeptical. But he agreed for me to proceed. My new hematologist, a woman, knew about the curcumin studies, which was great. I didn't have to explain anything to her when we first met. She approves of my alternative choices, even though she would have liked to have started me on a Thal cycle to bring down my still high BMB value. I refused. She said, "ok, let's see if the curcumin will bring it down any more." Open mind. That's what I want.
Doctors everywhere (with the exception of traditional medicine-based countries like India) are trained to be suspicious of anything alternative. Even diet! When I had MGUS, I asked 3 well known MM specialists if there was anything I could do to slow down the progression toward MM, and each one told me there was NOTHING. That is ridiculous. Even though, like Alex, I am convinced that diet alone won't do me much good, it does help. The American Cancer Society (hardly a sponsor of alternative treatments!) recognizes the importance of diet as cancer prevention etc. Yet no doctor will tell you to avoid sugar etc. etc. etc. etc. We patients need to change the system. We can start with our own doctors. Just my two cents. Margaret

Saw my neurologist yesterday and he validated that the neuropathy in my ankles/feet had healed somewhat-when I attributed it to my chiropractor, my vegan diet and circumin he rolled his eyes but acknowledged that I must be healing. I have diagnosis of MGUS from the Oncologist, The neurologist says there is a form of MS that comes and goes but added it is rare. So I'm off for a brain MRI next, Hmm.

My local doctor here in Dallas is on vacation. However, I couldn't wait an entire six weeks to find out if I was in remission or not, so I demanded they do a blood/urine test without him. I now have the results in front of me. All IS NORMAL. On one page it actually states: "No abnormal protein bands (Bence-Jones Proteinuria) detected." There is only TWO cryptic things (which I've never heard of) that are abnormally high: AST and ALT. Does anyone know what AST and ALT are? It also states: "Albumin and globulin are below the level of detection by agarose electrophoresis." Does anyone know what that means? Now, my WBC, RBC, and HCB, etc. are still abnormal, which I was expecting since I just had a auto stem cell transplant a month ago. MD Anderson "released" me because of these counts were good enough for me to go home. STILL if anyone knows what some of this other stuff means, I'd appreciate the information. I don't want to wait six weeks to figure this out.

My husband's doctor was smiling at diagnosis. I'll never forget it. Maybe it was nervousness, who knows. But, he called us urgently into his office to deliver the news: what we had hoped against hope was a single plasmacytoma was instead multiple myeloloma. And he smiled as he pronouced this: the smile of achievement: he had arrived at a diagnosis.

Later in the appointment he accused me of crying (I had tears in my eyes, nothing more elaborate than that). Told me it wasn't good for my husband.

But, when he delivered the news, he was smiling. The smile of achivement: he'd done his work well. I'll never forget that upturned mouth for the rest of my born days.

Lisa

Lisa, that is simply horrible! As I recall, you said you couldn't change doctors. Too bad. Well, the next time he smiles inopportunely, stand up and give him a poke in the ribs from me (nothing too violent; after all, I AM a pacifist), will ya? And how dare he judge you for having a few tears in your eyes? Are we not allowed to cry? Oh, what a jerk!
I think future doctors should be tested on their humanity before even allowed to enter Med School. The mean insensitive ones shouldn't be allowed to continue.
Well, you have my complete support, for what it's worth. Margaret, Florence Italy

I have MGUS but from the look on my oncologists and neurologists faces you'd think I was going to die tomorrow. And they use the word "rare" like I should forgive them that they don't see all this neuropathy and nerve pain that often- they tested me for MS, when it came back negative my neurologist refused to connect all this to MGUS.

I want House on the TV show for my Dr. He can be sarcastic and even laugh at me but I want him to want a successful diagnosis.

I did change Dr's - my GP wouldn't see me because I was an oncology patient now and I had an infection that had nothing to do with MGUS. MY new GP is a woman, she seems to listen to me.

I think there are a lot of Drs who have issues with Cancer of any kind- I have a friend with prostrate cancer who is also having difficulty with his Dr.

And what is it when I say I'm vegan and I'm proud of it but the Dr's just roll their eyes, not to mention telling them you're on circumin. It amazes me that Drs are interested in anything artificial you ingest but when you think of food as medicine, you're delusional.

Lisa-

You and your husband's relationship with his dr. is important going forward.  If you don't like this guy for whatever reason, change drs.  if you can't change drs., tell him what you are thinking.  If you don't want to confront him, give me his phone # and I will confront him.

The whole idea behind this list, interactive health information, is for the individual to take control of your health.  The dr patient relationship is an integral part of managing your health.

Heck, I cried after i was dx- I waited until the dr left but I cried like a baby.  I'm no shrink but I believe that the greiving process is important in dealing with your cancer.

As portlandrose points out, your mental state is important.  It is about you (your husband too)- you should listen to you- decide what you want.

David

Thanks so much to all of you for the responses. THe feeling of a support system is incredibly helpful, especially at this early stage when we are still reeling from the diagnosis. (Now I understand my late brother-in-law, who died of lung cancer last fall; he was talking about the various stresses he'd been through and he insisted that the diagnosis of cancer was a separate stress, not be to encapsulated by the surgery, chemo etc. that followed: it was a stressor all on its own. I now understand how right he was.) I do think that fighting myeloma is a holistic endeavor, and even though I'm just a caretaker and not the one with the illness, still I think that there is more to this battle than just drugs. Psychology is important, and my psychology is also important to my husbands' well being. And oh yes, grieving is a big part of it.I don't think we can fight if we don't grieve first. I suppose everyone has to do it in their own way, but it has to happen one way or another to move forward. At least that is what it seems to me.

I don't much like our doctor (I also think he "punished" me for my excessive questions by going into dire mortality statistics - which was exactly what my husband did NOT need to hear.) But, we live in a very small country (population 750,000) and we do not have many options. We've asked around and in medical terms this doctor is, it seems, our best bet. If we go to the government oncology clinic we will have to take whoever is available, so our hopes for any specialization will drop even further. So, we have a reason not to burn bridges. But, I am in the process of setting up a long distance consulation at Dana Farber, plus we now have a contact at Mayo clinic. But, really, I think our most important efforts will be in the realm of alternative care. I am trying to figure out whether we can go to the Gerson Hospital in Mexico for a couple of weeks this summer. It would not be cheap,that is for sure, but it would enable us to do the Gerson program intensively (which we are not quite managing on our own) and also get training and advice in how to personalize the program as well as combine it with conventional drugs (since my husband is too nervous to give up conventional medicine entirely - which i do not in the least blame him for).

we are also thinking about trying to find a way to harvest stem cells without chemo, as a safeguard for the future, in case we ever decide we DO want to do transplant. I am wondering if anyone on this list has done that (harvest stem cells without actually doing transplant).

Meanwhile, I am more convinced than ever of the downsides of conventional medicine. My husband had been off of dexamethasone for about a month, maybe more, and the doc put him back on a four day block. In the meantime, we'd been doing Gerson so he was pretty detoxed. And his reaction to this last bloc of Dex was horrific. He was mostly bedridden for about 4 days, and was totally miserable. This didn't happen to him the first month, when he was on Dex four days on, four days off, but at that point we had just started Gerson. Now, we've been doing it long enough that his whole system must be acutely sensitized. It was pretty bad. We're going to ask to keep him off of Dex from now on, if his numbers are down. I'm desperate to find out those numbers.

LIsa

Lisa-

Okay, this dr is you best bet.  Unfortunately, this puts a little more pressure on you to be a bit more proactive. 
- keep asking lots of questions-knowledge is power
-setting up some sort of relationship with Dana-Farber and Mayo is good for conventional input-
-though I am certainly no fan of conventional therapies, I can understand how many newly dx survivors wish to pursue them as therapies-therefore, learn about basic, straightforward complimentary therapies like the antioxidants that Margaret referred to above, trying to get your heart pumping each day, drinking lots of clean water, etc- especially if your husband is detoxifying so much.
-you refer to your husband being so sensitized- perhaps you can discuss lower doses of meds with your dr- (along with the benefits of antioxidant therapy)- I have read many posts on lists of people saying that, for instance, 50 mg a day of thalidomide was just as effective as the usual 200 mg a day with fewer side effects-

Good luck-

David

Lisa-

In this post I suggested the possibility of a lower dose-

"-you refer to your husband
being so sensitized- perhaps you can discuss lower doses of meds with your dr-
(along with the benefits of antioxidant therapy)"

Though the chemo/antioxidant study clearly points out that supplementation can allow the minimizing of side effects allowiing for a full dose of chemotherapy.

David

Thank you David. We have asked the dr. twice now about a lower dose of Thal but he is unwilling to consider it till we get the numbers. Fair enough, I guess. But meanwhile he keeps telling us we'll get the numbers next appt - or that is what I understand - and then we are told it is too early to do the electrophoresis test and get any meaningful results. We have just had it put off yet another month, which is deeply frustrating to me. Meanwhile, I think the supplments are indeed helping my husband with the side effects of thal (the numbness and tingingl, for instance). But, he got scared by that latest report on prostate cancer and multivitamins and now isn't sure he wants to keep on taking lots of vitamins. Also, since we're following Gerson (or trying to) I have some confusion about the supplementation issue. The Gerson protocol recommends some very specific vitamins and supplements and discourages others. We've been using a much broader supplementation scheme than the Gerson protocol. Now I'm thinking of scaling back to exactly what the Gerson protocol recommends, and no more, for a while. However, we have recently started curcumin and i would like to see what effect that has. We started with a cheap variety my sister sent me from the US, and recently discovered that it seems to have been passing through his system totally undigested!! now we have some gel capsules instead which ought to work better and which are a more reliable brand.

Lisa-

You mention several issues in your post.  Issues regarding your onc, always keep in mind that the patient is in charge.  The dr should be able to explain why he recommends that your husband continue doing a specific therapy at a specific dosage.  Or when test results will be available.

As you have posted before, you are not crazy about this onc but he is your only choice.  That's fine, I'm just saying that asking him pointed questions which require specific answers is a good habit to get into- accountability is good for all involved.

I know little about supplementation re the Gerson therapy.  I think it's safe to say that supplementation and cancer in general is a little understood issue.  The analysis that i referenced earlier spoke of antioxidant supplementation during chemo or radiation therapy.  I can understand nervousness on your husband's part.  I can only speak of my own reliance on supplementation and my side effect healing process.

Margaret from Florence is the resident curcumin expert. 

Good luck and keep us posted.

David

Thanks for the input. The info about the Free light test is really helpful, Cathy. I'll ask about it at our appt. tomorrow. I don't know if it will be available here but I'll ask. Also, David, thank you for the encouragment to be proactive with the doctor. Between his arrogance and my husband's reluctance to rock the boat too much I have to be careful how I approach things, but we really need to develop a relationship with him that is not just him telling us what to do as if we have no choice in the matter. That's the key thing, I think, and it also involves us internalizing that notion - that we DO have choices and it is we who are choosing to accept or not accept particular treatments; we are not just passive recipients. One of the questions I intend to ask is about Zometa vs. Aredia; at this point I"m a little confused as to which is really better, but I would like him to explain to us his rationale for prescribing Zometa over Aredia without giving us any options -- and it ought to be more than just "it's a shorter infusion time".
About curcumin, once we started using a decent brand of curcumin that was actually getting absorbed instead of passing through completely undigested (!), my husband noted that he felt better and had less side effects from the thal. He said it was a very direct correlation. He felt better once he started taking the higher quality curcumin (preceded by quercetin and accompanied by fish oil; thank you Margaret for the tips!)
I'm deeply appreciative of this list. If I had only had access to the ACOR list after diagnosis I would have given up in despair by now. I still haven't had the courage to post there. I can just imagine the reception I'll get if I mention Gerson.

Please keep in mind that some mm specialists, including Dr. Berenson, do not like the serum freelight test at all. For me, the absolute numbers are completely meaningless, as, even when in remission by all other tests, I was 20,000 times the normal range for this test. Believe me--there is nothing I would like better than to use this test instead of doing a 24 hour urine test. I am not sure why it does not work for me, but it seems that even when my body is not producing light chains, they still stay in my serum for a long time, when they are not passing through the kidneys any more. I do not exactly know what they are doing in the serum--if they will just degrade over time or not. But when my body is not producing them anymore,no more show up in my urine. But they are in the blood. However, Dr. Berenson, who was the one who told me to take this test, told me "Do not worry about it, Alex..I do not even use it anymore".

Alex Maas
a.maas@cox.net