Hi everyone! This is an edited version of the post I just put on my blog (http://margaret.healthblogs.org/) I was dreading the arrival of my test results since I took these tests during a period of (a bit of) stress, I had just begun my new job etc. Well, HURRAY definitely replaces DREAD! But let me proceed by degrees.
I will compare these tests, taken on November 19th, to the ones I took in September. My IgG has dropped from 34.3 (September) to 27.8 g/L (now). The normal range is 7-16 g/L. I have always been terrible at math, but that’s almost a 20% drop, no?
My IgA and IgM are as stable as rocks, haven’t moved a bit, but that is ok with me, even though both values are very VERY low. The important thing is that they didn’t go any lower!
My blood viscosity has dropped from 55 to 48 mm/hour, which is good. Keep in mind that this value has gone as high as 95! Creatinine is stable at 0.7, within the normal range; calcium is slightly up but still way within the normal range; albumin is still within the normal range (yippee). Bence Jones is NEGATIVE (yeah, yeah, yeah!). Beta-2 Microglobulin has gone down slightly, from 1.8 mg/L to 1.6 (normal range: 1.2-2.5 mg/L). Also good.
Not much really stands out in a negative sense. My serum iron, however, has dropped from 109 to 62 micrograms/dL (normal range 60-140 mcg/dL), so I will have to do something about that. Yikes. I see a few steaks in my near future. But my ferritin, which was 8 ng/mL in September, is now up to 10 ng/mL (normal range begins at 15). Still low, but going in the right direction, at least. My m-spike is also stable.
Hope everyone is doing well. Take care, Margaret
Florence, Italy
Linda M - Houston
 Margaret, what good news! Your holidays are going to be very special! Meanwhile, I am "eating" curcumin. Thanks for the information and support you provide, both individually and on your blog. Linda
Margaret-
Good news to say the least- your experience really is terrific for all mmers. I am reading more and more listers asking for info on curcumin. I too am eating curcumin every day- thanks. DavidÂ
Margaret, that is great news! I am really happy to hear it. An inspiration for all of us.
 I've been offline for quite a bit, because we moved to a new house (the culmination of a 20-year project/dream of my husband and myself) and although I thought I'd only be without a computer for about a week, in fact I was without a computer for over a month! I had, if I recall, 2272 messages waiting for me when I accessed my email! Yikes! I'm never going to move again (I hope!) but if I do, I'll be sure to a) let people know I might disappear for a LONG time, and b) switch all my list subscriptions to web mail only!!!!
 In the meantime, unfortutunately my husband's latest test results were not great. His CR vanished and he now has 0.7 g/dL of abnormal protein (about 10% of total serum protein) on his electrophoresis test results. The odd thing is that everything else, almost, is normal - total protein, albumin, globulin, A/G ratio, alpha1, alpha2, gamma.... only the Beta is very slightly high. And his hemoglobin is a bit low. I knew it was coming, though, because his IgA doubled, was up to 727 (ref range is 70-400).
 As for why the M spike came back -- well, in November we went to the UK for stem cell collection - a physically and emotionally difficult trip. Then we came back and my husband had surgery (he has a hard time with needles, much less scalpels and full anesthesia). Then we moved - and oh boy was that stressfull. And, amid all of that, the Gerson protocol was more or less cast adrift by the wayside. Of course he also went off the Thal/Dex in mid- October, in preparation for the stem cell harvest. So, why did he relapse? Was it becuase he was off drugs? or off Gerson? or the stress? who knows.
 Right now he is back on 200 mg of Thal a day. He hasn't yet started the Dex (doc doesn't know this yet). He wanted to give it a month on just thal, and a better diet, to see what happens. So, pretty soon we'll find out. If his numbers come down with just Thal he'll probaby opt to stick with that for a bit.
It was hard getting those test results. I will admit it: part of me thought, despite all I know from my reading, that having achieved CR we could keep it that way. I knew better intellectually, but emotion is a funny thing. Well, we couldn't. So, back to the drawing board.
 The good thing is that the surgery went really well, and it healed like a dream (he was off the drugs, and I am SURE that that made the difference). Also, the fact that they shaved off a bit of bone made his spinal hump from the previous surgery much less noticeable (an aesthetic matter, but sometimes aesthetics help). And a plastic surgeon was on the team this time, and oh boy did that help the look of the scar. Had I known we'd have done that from the start.Â
 I'm just so glad to be back in touch with the forum. Hope everyone has a wonderful holiday!
LisaÂ
Lisa- I noticed that you hadn't posted for awhile and I figured that you were busy- and busy you were. Welcome back.
As for your husband's testing...
"It was hard getting those test results. I will admit it: part of me thought, despite all I know from my reading, that having achieved CR we could keep it that way. I knew better intellectually, but emotion is a funny thing. Well, we couldn't. So, back to the drawing board."
I believe that ups and downs are just a normal part of our mm experience. From the original cancer dx, to levels rising and falling- the important thing is that you know much more now than just months ago. Good luck and happy holidays. David
Thanks, Cathy and David. I speak with conviction when I say that I could not have made it through this MM journey so far if I had not had the support of wonderful folks like you and others I've met here and through other forums. God forbid we had had to face this disease before the advent of the internet!
 My husband sees his doctor on Monday, so we'll know the latest test results. He'll also have to let the doctor know he didn't take that dose of Dex. We're not looking forward to the doc's reaction to that. Hopefully the test results will be decent and that will help smooth things over.
Meanwhile, I've realized that caregivers have health issues too, so my new year's resolution is to take a little better care of myself. My fatigue levels scared me recently (fatigue was my husband's main warning sign before diagnosis, before his spine collapsed that is). I've been trying to follow parts of the Gerson diet myself lately, and it actually does seem to make a difference. But, I think I'm going to wait till January 2 to give up coffee and wine! Happy holidays.
Lisa- you make several important points in your post.
1)"God forbid we had had to face this disease before the advent of the internet!" The academic term is "interactive health communication" and I know we all know this concept in general I just think it's important to point out because b-m.org is planning to take this concept beyond websites, forums and blogs- more to come.
2)"My husband sees his doctor on Monday, so we'll know the latest test results. He'll also have to let the doctor know he didn't take that dose of Dex. We're not looking forward to the doc's reaction to that. Hopefully the test results will be decent and that will help smooth things over."I understand that you have had a difficult time with your onc. It is good to know that you and your husband do what you know to be the best for him even though your onc may be difficult.
3) As your husband's primary caregiver, your well-being is critical! "But, I think I'm going to wait till January 2 to give up coffee and wine! Happy holidays." However it is important for me to mention that I indulge in one large cup of coffee each morning (to drink) and a glass of red wine a few times each week. I couldn't give either up completely. Coffee, dark chocolate and red wine all have healthful properties. David
David, you wrote "I understand that you have had a difficult time with your onc. It is good to know that you and your husband do what you know to be the best for him even though your onc may be difficult."
 Alas, our meeting with the doc didn't go too well. First, my husband did not tell the doctor that he didn't take the dex - turns out at his last zometa appointment he allowed the doc to assume he had in fact taken the dex dose, and he was not comfortable admitting that he had misled the doc. So, although my husband's hemoglobin took a leap (to 14.5) and everything else is within normal range on the regular blood tests the doc doesn't know it happened without Dex. My husband did ask about not taking Dex (without admitting he'd already done that) and got a lecture about not messing with the protocol that worked, and about how my husband is taking such a benign treatment. The doctor was going on about how "we are not using toxic treatments and we are not experiencing any side effects" - using the "we" as if including himself - and I pointed out that HE is not taking the drugs and no, HE is not having the side effects! He didn't get it, though.
Second, we ended up having a horrible interchange. The doctor was saying that he didn't want to do the electrophoresis test for a few months, and he said that it was his job not only to protect the patient but also to protect the family members, and that it was not good for patients and family members to know the numbers too often. I commented, without any acidity or overtone or anything controversial at all, that actually as a family member what I found most helpful was knowledge. This set the doctor off on a rampage about how I was not a doctor and once and for all I shoudl get it through my head that I have no medical training, that whatever I read on the internet is rubbish and even if I read scientific information I have no way of understanding it with my education, that he is a professor of medicine who was head of transplantation in the U.S., and basically that we had better just back off and let him play God. When I pointed out that I was simply reacting to his statement that I would be better off not knowing the numbers, and that I was trying to let him know what would in fact help me as a family member, he tried to deny having said it, and asked my husband whether he had heard him say that. (My husband acknowledged that yes, he'd heard the doc say just that.) The whole thing was surreal, but also horribly upsetting. My husband pointed out later that clearly the doctor had that lecture on the tip of his tongue and was just waiting for an opportunity to lambast me with it, and although what I'd said wasn't really an appropriate moment, he was too caught up in his own desire to set me straight to notice.
I would have been happy to take the opportunity to tell the doctor a few things, but my husband was so uncomfortable with the situation that I didn't. I now feel that it would be best that I not go to routine appointments. I cannot even ask the simplest of questions without setting off a firestorm, and anyway I don't trust the doctor to give me the correct answers in any case. Today the doctor was going on and on about how my husband is so lucky, that other people are hospitalized repeatedly for side effects from the treatment, that Thal has terribly serious side effects for some people and my husband is so lucky not to have suffered any of them, etc. But I reminded my husband later of the time when the doctor told him that he has "never in his entire career had a patient suffer serious side effects from Thal".Â
Anyway, there we are. Not a good way to end the year, and not a great way to start a new one. Â
Hi everyone! Hope you all had a lovely New Year's Eve, and will have an even more splendid 2008! Do remember that, according to Italian tradition, everything you do today you will do for the rest of the year! So don't do any ironing (unless you like to iron!)! ;-)
Lisa, even though you said that this doctor is the best you can get in your neck of the woods, I am beginning to think that even a "simple" GP or family doctor would be better than this crazed man. Heaps better. Dr. Madman is creating a lot of stress for both of you, which (as we know from recent studies) is NOT good. Not good for you, but especially not good for your husband. MM cells proliferate in the presence of stress hormones. I wrote a post about that recently.
With your knowledge (in spite of what Dr. Madman says, you know more about MM than he does!), and with the medical support and connections that by now you have overseas (the specialists you saw in the UK, for starters), it would seem to me that you could get by with a regular, non-specialist doctor, someone who wouldn't yell at you and challenge you every step of the way. You would need a GP who would be humble enough to be in touch when necessary with an overseas MM specialist by phone. The present situation is simply degenerating. From what I have read, it appears to be intolerable NOW. I also don't think your husband should go alone to appointments with Dr. Madman.
Of course, this is just a thought, and I don't know all the circumstances etc.
Sorry to be so blunt. I mean well. I care about you guys!
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Margaret, don't worry, I appreciate bluntness and I appreciate your concern! It is nice to know we have friends out there. :-) It is also nice to know that I'm not the only one who thinks that this kind of behavior from one's oncologist is outragrous. (He tried very hard to make me feel like an idiot, and being a self-doubting kind of gal much of the time, in another circumstance I might have paid more attention. Not this time, though.) And, thanks for giving me the perfect nomenclature for this guy. I wouldn't want to use his name in public (he might sue me for defamation of character!) but "Dr. Madman" fits the bill beautifully!
I have in fact thought for months about the very solution you propose. I'm afraid of it, though, for a couple of reasons. One, I think that when one is at a distance it is quite hard to get an immediate response from a doctor. It took me a solid month just to get an appointment with Dr. Morgan for stem cell colection, and this is after I called and talked in person to his very nice administrative assistant, and had extended email discussions with his lovely transplant nurse, and repeated a zillion times that as my husband was in CR we wanted to get those stem cells ASAP. I had the personal connection and I couldn't even get them to look at the agenda book to give me a date I konw a personal relationship between doctors is different, but I would worry about getting Dr. Morgan's attention in a timely manner. Especially as he is a busy guy who works between two different hospital locations. When we went for our appointment he didn't look (and hadn't looked) at any of the records we sent him. He had I presume read the brief refereral letter our doctor had sent. But what he told us seemed to me a textbook approach that he probably gives to every MM patient he sees within my husband's age range. I"m not convinced we'd get personalized attention from a distance, even through a doctor.
My other concern is that I fear not having a specialist doctor close at hand. One of the things that has always stuck in my mind is the experience of my friend who had MM. There were occasions when her MM took off at a galloping pace and the delay of a day in getting to the appropriate doctor would have had major consequences (a tumor poppoed up in her arm, affecteing her nerves, for instance, and apparently a day's delay in dealing with it might have meant the permanent loss of arm function). Her husband stressed the need for constant surveillance (he was even talking about going to the doctor every week or a couple of times a week, which we are certainly not doing). If our MM specialist is in another country, and the local interface person knows nothing about MM, that scares me.
But, indeed, the present situation is intolerable (and it sure spoiled new year's for me, which annoys me to no end. And, my husband has been just exhausted and I don't think it is only from the cold he is nursing, or staying up late on the 31st. It's not a good situation.)
My husband wants to go alone to the next appointment and have it out with the doctor himself. He thinks that if I'm not there it will go better, because obviously the doctor's ego is at stake and he won't take well to being challenged while I'm in the room (not only am I an annoying upstart family member, but I'm a woman, heaven help me!) Meanwhile, he also agreed to look around once again for other options. I would not mind going to parallel doctors for a couple of visits, even if paying out of pocket, to get a sense of our options before severing any ties irrevocably. (If we leave this doctor it would be irrevocable, I think. I heard a story about a woman who went for a second opinion to another doctor in Israel, and when he found out Dr. Madman was so incensed that he hurled her chart across the room at her, shouting that HE had trained this guy and how dare she go behind his back to him?)
Sigh. Bad enough to deal with myeloma. But Dr. Madman on top of it?
Anyway I hope everyone had a wonderful new year!!
Lisa-
I didn't read the digest yesterday so I read both of your posts (your post from monday, then your post from wednesday that will appear thurs) and Margaret's comments to you.
Like Margaret says, there is a lot that we listers don't know. And you and your hubby are in charge. But I must agree with Margaret's point.
"(not only am I an annoying upstart family member, but I'm a woman, heaven help me!)"
You are your husband's primary caregiver and a quite knowledgable one at that. Please find someone else.  David
My goodness, Lisa, what an upsetting situation you are having to deal with. Since it continues to escalate, you really must find another solution for both you and your husband's sake. Shame, shame, shame on Dr. Madman ... he will have to face his actions one day, but that doesn't help you any right now.Â
As a caregiver to an MM patient in CR I understand your fears. I worry so about those next test results - but try to keep that worry from my husband. I do my best to keep his stress level as low as possible. I read and research and pray ... but admit that as knowledgeable as I can try to become, I am not a doctor and I shouldn't have to carry that burden. If your husband only saw a GP, that would put even more pressure on you to keep on top of everything. Is there truly no other oncologist in Cypress that can treat your husband? Any oncologist - regardless of their speciality - would be better than Dr. Madman.
After experiencing such a horrid appointment, I'm curious whether you received the latest test results. With all you both are dealing with, the least we can hope for are some positive test results.
Dianne in Henderson, NV www.caringbridge.org/visi...
Hi everyone, okay, upon reflection, and after reading your (Lisa)'s message, perhaps you are right to stay with this crazy megalomaniac. I mean, if you have no other choice. I have a suggestion, though, which means that I take back my comment on NOT letting your husband go alone to these appointments. I think your husband may well be right on insisting he go alone to the next appointment, at least to see if things are easier, but this is my suggestion: why doesn't your husband tape the appointment so you (both) don't miss anything? I have a reason for saying this, as follows.
Based on my own experience, I think there could be problems (problems of interpretation etc.) when only ONE person goes in to see a specialist. I think we patients should always be accompanied by someone: a friend, a relative, a neighbor, someone off the street, anybody. When I go to see my MM specialist without my husband (and this has happened only once) I am always worried that I won't catch every little nuance. This happened, actually, on one occasion: during my first appointment with my present MM specialist, I completely misunderstood something that she told me, and was very upset afterwards. But Stefano (my husband), who was present, set me straight, and made me realize what a big mistake I had made. I forget what the exact issue was, but it was actually an important one! That is why, in my view, the patient should always be accompanied by someone else. One can catch things that the other didn't. Even nuances, as I mentioned before.
So that was my main reason for advising against your husband going in ALONE.
BUT if your husband can tape the sessions with mad doc, with or without the his knowledge (I wouldn't have a problem with the doc not knowing, to be honest; after all, it's not as though you are going to put these appointments on YouTube), I guess that might solve THAT problem. Taping the appointments would ensure that you (both) wouldn't miss anything important. At the very least, your husband MUST take careful notes, and have the doc repeat everything if necessary. You can try either approach and see if your not being there makes things better.
Boy, your most recent post about the doc throwing charts across the room...NO COMMENT! Except for MAMMA MIA!
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Lisa-
Okay, okay, switching oncs seems too difficult. Therefore, we are back to trying to make the best of a difficult.
If you think that not being at your husband's next appointment might help the situation, record the appointment. Honesty is the best policy so I would begin the conversation by explaining that since you are not at the appt. recording the conversation is essential.Â
If you present the idea as a compromise hopefully doc mad will not have too much of a problem.
Margaret makes an excellent point. It is unfair to ask your husband to understand everything that your onc says- there is bound to be misinterpretation. My wife's presence at my appointments was critical to my experience.Â
Hang in there. DavidÂ
It's a good idea, but I have a fairly clear idea of the reaction if my husband suggests taping the session. Also, for this time in particular, it would be counter productive because my husband wants to talk to the doc precisely about the communication issues, and if the doc knows he is being taped, i don't think they are going to get very far. My husband wants to be very direct with the doctor about the fact that his aggressiveness and his refusal to approach our medical problems from a perspective of teamwork are making it impossible for us to talk to him about the adjunctive things we are doing. I hope he'll also find a way to mention that the contradictions in the information the doctor gives us are not helping anything. Hopefully he'll find a way to tell the doc about not having taken the Dex. Ideally, he would be able to convince the doc to run another electrophoresis test to see what Thal alone without Dex has done to the numbers. We'll see.
By the way, a friend just told me that she met a man whose wife was diagnosed with terminal cancer (don't know what kind) and given very little time to live. They went to South Africa and consulted a doctor there who specializes in dietary approaches, and long story short, the woman is now cured - instead of dead. I'm anxiously waiting for more information and will pass it along when I get it.
Lisa- I believe you know best- perhaps a man to man (or survivor to onc, sane to mad, you get the idea) discussion is the best way to proceed. Good luck.
Re your friend's aquaintance's wife- I have been told of numerous stories like this- a terminal cancer patient who recovers. I always wish that I knew detail- more about the specific therapies that the newly dx'ed patient uses to recover. As you know, this list has discussed everything from individual supplements like curcumin to broader lifestyle therapies like Gerson. The more info you can get the better. Thanks. DavidÂ
Hi everyone!
A prostate cancer patient sent his story to Beth who posted it on her blog today (or yesterday, depending on your time zone). I think it will be of interest to all, even though it's not myeloma. See: http://tinyurl.com/3dfc8g
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Thanks Margaret-
Interesting story. No the cancer in question was not mm but the lifestyle issues apply directly as far as I am concerned.
Of the many important things mentioned in this story was the fact that this guy relied heavily on a vitamix blender for his daily juicing. I read an article about this company recently (cleveland based co). Recent blood testing indicated that antioxidant levels in my body average 65%- weak considering all of the supplementing that I do. Therefore I am thinking of using a vitamix machine. Â
Does anyone have any experience with one? DavidÂ
"A prostate cancer patient sent his story to Beth who posted it on her blog today (or yesterday, depending on your time zone). I think it will be of interest to all, even though it's not myeloma. See: [external link]"
Hi David and everyone, I use a Greenstar, which is a triturating type of juicer. I love it, even though it's a bit of a drag to clean. I don't know much about Vitamix, but please stay away in general from blenders, which is what Vitamix appears to be. I could be wrong, of course.
The thing about blenders and centrifugal juicers is that the electricity and heat they generate kill the enzymes contained in fruit and veggies, and those are the things we MMers (cancer folks in general) really need, from what I have read. So my advice is to invest in a masticating or triturating juicer: Norwalk, Champion, Omega, Greenstar of course, and so on.
I wouldn't bother with anything else. Just my 2 cents.
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Speaking as someone who was once horrified at the mere idea of investing in a Norwalk, i now urge anyone considering a serious juicer to consider it. Yes, it cost me more than my old car could bring on the open market. But oh my is it worth it. The Gerson book says that in a year's time you make up in savings on produce what you spend on the machine, and in my estimation, that is correct. The machine gets a LOT of juice out of the produce, far more than my old centrifugal juicer. And the quality is unsurpassed. The first months using the Norwalk I was so nervous about breaking it (given the price) that I was a nervous wreck. Now I can't imagine life without it. Yes, it is expensive. But if you're planning to make more than 1-2 juices a day, I believe the savings over time are worth it, as are the savings in quality. We bought a small juicer for our trip to England, and it was such a pain in the neck. It took me half an hour to produce a tiny glass of juice; in the same amount of time I could have produced at least a gallon of juice with the Norwalk. Plus, it took way more produce to get that tiny amount of juice. It felt like throwing money away to use that juicer. If you are considering becoming serious about juicing, don't blanch at the steep cost of a good juicer - you'll make up the difference rapidly.
I don't have more information about the person in question, but here is the website of the doctor she went to who helped her.
drkaralis.com/Â
Hi Lisa and all,
  Is there a local mm support group in your city or area that you could contact ? We have two now in the Jacksonville, Florida area and I've been attending both and they've been very helpful sources of information and support. If not a myeloma group, perhaps a leukemia or lymphoma group - there may be another great hematologist in the area (hopefully one that doesn't act like a three year old !!!) that you're unaware of that could oversee your husband's treatment.
  I think taping is a great idea -we did so at first with both of our oncologists' permission- but I seriously doubt if Dr. Madman would permit it (yet another great reason to ditch him!!). I would worry about the legality of secretly taping - is it against the law ? There would be no point in it if it were.
    It doesn't sound like you're ever going to have a good relationship with Madman and since you doubt a lot of his medical advice anyway, perhaps it would be best to severe the relationship as soon as you can find a competent replacement, even if not a myeloma specialist.Â
Lisa, enjoy your new home and I hope and pray that the new year gets better for you and Andreas soon!
Patricia, St. Johns, FL, USA
 Â
  Â
I just want to thank everyone for their input. I am not sure I"m closer to a solution, but I feel a lot better and lot less lonely as a result of all of your input. Thank you!
I don't think my husband is going to be a stellar note taker in my absence, and I know he wouldn't tape Dr. Madman secretly (and no, Dr. Madman sure wouldn't allow being taped!). But I really agree with Margaret about the importance of having another person in appointments. Right after diagnosis, my husband was in so much pain, and was so heavily influenced by a childhood friend who is a radiologist, that he literally could not hear what Dr. Madman was advising (no radiation - perhaps the only thing I've agreed with him on!). If I hadn't been there and kept insisting on what *I'd* heard the doc say he would have gone ahead and done radiation - needlessly, as it turned out, and with unknown possible harm.
In response to Patricia's very good suggestion, I did a web search for MM support groups in Cyprus. Nothing came up, but I did find a European cancer coalition with a few Cyprus emails on there. My problem, though, is that my husband has chosen to keep his diagnosis private in Cyprus (even his family doesn't know). So, I'm a little stymied in terms of seeking local support, since this is a SMALL place with NO anonymity.
A friend - one of the very few who know our situation- who is in the medical field and who knows Dr. Madman dropped by today, and advised us to just laugh it off. As he says, Dr. Madman expects us to worship at his feet. Well, yes, but I"m just not prepared to do that.
So, no answers. I don't think we're going to be burning any bridges, but I'm going to be doing more research and trying once again to see what our options are. I understand that there is a serious dearth of hemotologists in the country, but there must be more than just Dr. Madman and the one at the oncology center whom we saw and dismissed (and who has since left the country in any case! ) Meanwhile my husband went ahead and did the blood tests he needs for our consult with the Gerson practicioner I located in Australia. (the nurses at the clinic were super understanding when he went in - he gave them the routine prescription from the doctor, and then pulled out his hand written list of other tests he wanted done - and they said, oh, we'll type these ones up separately so the doctor won't see them, yes? Apparently Dr. Madman is well known even to the staff of his own clinic!)Â
I was pretty despairing a few days ago but am feeling better now, so we'll just take things one step at a time. Thanks to all of you!
PS The test results look pretty good - hemoglobin 14.5, most everything else in the normal range. So, at least there is that. But, Dr. Madman says he "refuses" to do the electrophoresis test for three months. This, despite the fact that Dr. Morgan in the Uk urged us to do electrophoresis every 1-2 months. Dr. Madman is on a power trip, clearly.Â
My experience is most oncologists, and for that matter most MDs are not going to enter into what if with you on non-clinically proven compounds. You don't have to look any further than losing their medical insurance if you have a negative reaction for any reason including just having the disease and sue them.However, I believe if you keep your discussions to what drugs they have prescribed and what are your results I believe you will get cooperation. After all, without your blood work they can't show you why you need dexamethasone.
I realize that leaves you to assess the outcome of adding various compounds, curcumin, etc., so be it.
I was on 150 mg maintenance thalidomide (without dex) for 2 1/2 years. It didn't really do much for the first 9 months until I added just 500 mg curcumin (Jarrow brand). Within two weeks by M-spike dropped 200 mg/dL. At the end of 2 1/2 years, my M-spike was just 124 mg/dL and all my other numbers were normal.
Terry
I agree with you on the issue of why docs won't spend their time on non-traditional approaches, and for that reason, after informing our doctor and handing him a list of the supplements we are using, we haven't actually mentioned the subject. We have kept our focus with him on the issue of the drugs he has prescribed.
However, we have gotten no cooperation. We have had the discussion many times about lowering dosages and he does not want to hear about it. This is despite the fact that we brought him the study about low-dose Dex among other things. (he said that since the study was not about Thal that it has no relevance at all to our case). When I mention having read anything - mostly scientific artticles about the usual MM drugs - he tells me, derisively, that I can find anything I like on the internet, including guaranteed cures for cancer that have no side effects. (In retrospect, I found it interesting that in the same conversation he told us about someone who died after trying an herbal remedy, and then mentioned that most people have terrible side effects from their (conventional) treatments and some die! (Hmm.. if you die from a conventional treatment it means nothing, but if you die from a nonconventional treatment it means alternative approaches are rubbish?).
The doctor refuses - his word - to do another electrophoresis test until three months have passed. His anger is mostly about the fact that we want the information to make decisions ourselves. He does not view the decision-making process as being our prerogative. He views the decisions as his. Last summer, when my husband did refuse the pulsed Dex (three pulses a month) the doctor made a big deal of noting that he was rejecting medical advice. (The fact that he got into CR without the pulsed Dex doesn't seem to have made a dent in the doc's outlook). Yesterday my husband went for Zometa and overheard the doc having a conversation with another woman there for treatment. My husband characterized the conversation as one of veneration on the woman's part and Dr. God on the doc's part. This is the relationship he is used to (and given local attitudes here, he probably gets it most of the time). He is not used to patients who feel that their health is their OWN responsibility and that the decisions are theirs.
The risk we run is having him refuse to treat my husband. For the reasons I've discussed before, we do not feel comfortable taking that step - yet. At least not until we find some viable alternatives, which till now we have not.
I apologize for taking up so much bandwidth on Dr. Madman. My husband and I are not wimps, but the situtation is a tricky one.
Lisa and all-
Below is a link to an article about the importance of sympathy on the part of oncs- I quoted a few key paragraphs. It is clear that you are between a rock and a hard place with doc mad. If you can't get empathy from your onc then by all means come to this list- write and take up all of the bandwidth that you like. David Â
"Research supports the idea that a few kind words from an oncologist — what used to be called bedside manner — can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.
“It is absolutely the role of the oncologist†to provide a bit of emotional support, said Dr. James A. Tulsky, director of the Center for Palliative Care at Duke University Medical Center.
But in a study published last month in the Journal of Clinical Oncology, Dr. Tulsky and other researchers found that doctors and patients weren’t communicating all that well about emotions.
The researchers recorded 398 conversations between 51 oncologists and 270 patients with advanced cancer. They listened for moments when patients expressed negative emotions like fear, anger or sadness, and for the doctors’ replies.
A response like “I can imagine how scary this must be for you†was considered empathetic — a “continuer†that would allow patients to keep expressing their emotions. But a comment like “Give us time; we are getting there†was labeled a “terminator†that could shut the patient down.
The team found that doctors used continuers only 22 percent of the time. Male doctors were worse at it than female ones: 48 percent of the men never used continuers, as opposed to 20 percent of the women.
Surprisingly, Dr. Tulsky said, the patients didn’t bring up emotions that often — in only 37 percent of the conversations."
http://www.nytimes.com/20...
I use my Internist to also monitor my Myeloma. The benefits of this is he uses a different lab at a different hospital which provides a check at critical times. He is also more interested in my mental state. I try not to abuse this extra testing but it is my life and my money and I found it just as effective as Prozac. I don't share the results with my oncologist because frankly, he would not be interested since he is not particularly interested in his own lab results, maybe for good reason. Now I am going to talk to you as a scientist. Unless you have a very aggresive form of Myeloma, you judge results over months because: (1) it isn't going to kill you and (2) it won't change the outcome because there is no cure, and (3) the last thing either he or you want to do is change the treatment because the side effects will likely be worse. Sorry for the hard talk, but I believe most MDs are not very good at explaining what they are thinking and I believe this is what he is thinking. However, cancer patients don't have to be logical, and if you need the data for peace of mind you are intitled, just get it the easiest way possible.
TerryÂ
Again, thank you to everyone for all the input, suggestions, and general empathy. (Especially since it is indeed in very short supply from the doctor.)
About Dr. Madman. I don't need to speculate what he is thinking because he has told us, repeatedly. He believes that if a protocol is working, you don't change it. On the basis of this philosophy, he wanted to keep my husband on high dose Dex (40 mg four days on, four days off) and 200 mg daily of Thal even after getting to CR - and this despite the recent information about low dose Dex. He does not believe in lowering doses for maintenance. He also does not take any notice of side effects that are not of major clinical significance (like a DVT); in fact, every mention of a side effect garners not empathy, but an outright scolding about how we should stop whining and instead thank our lucky stars that my husband has not been hospitalized and lost his hair and suffered life-threatening effects from treatment).
It is abundantly clear to me, after months of interactions, that a large part of what is going on is his slighted ego and the fact that, in his view, his authority is not being respected. I am familiar with this phenomenon among doctors here; it is quite common and most of the foreigners I know here complain of a culture clash when it comes to the doctor-patient relationship. In general, patient expectations of information about their medical condition is viewed as a challenge to the doctor's authority. (My GP, who is an American, tells me what other doctors tell her about patients who "think they can understand medicine"). Our concern all along has been to discuss with our oncologist about finding the lowest effective doses of the drugs he has prescribed that will do the job, because we are interested in limiting side effects. But, he won't even discuss lowering doses, because, as he says, "that's the protocol; I didn't invent it." And our simple desire for information is viewed by him as an attempt to play doctor, and disrespect for his authority.
My husband (who is a research scientist) and I believe that it is logical to want to use the lowest dose of drugs required to get the necessary response, if possible, and we also believe it is logical to wish to ascertain the efficacy of a treatment through testing. (Dr. Morgan in the UK urged us to do electrophoresis every 1-2 months, not every 4 months as the doctor here wants to do.) We also would like the doctor to handle my husband's case on its own merits, not as something to plug into "The Protocol" (capital T, capital P).The first time around on Thal, the doctor resisted doing electrophoresis before 4 months, on the basis that "nothing much would show." When we pushed him to do it at 3 months in order to have data for our consultation with Dana Farber, it turned out that my husband's paraprotein had almost disappeared, which the doctor didn't expect. That might happen again this time around, and if it did, that would a) encourage us, and b) provide more reason to consider lowering dosages to avoid unnecessary toxicity while still achieving the same results. So, it is really not just about peace of mind. It is about having the data with which to make decisions. But, as I said before, the doctor does not view us as having the right to make decisions.
My husband does not have an internist, but maybe finding someone is a good idea. I don't know if they would be willing to prescribe the specialized tests, but we could try. In general doctors don't like to step on each other's toes here - the medical community is very small and everyone knows everyone else.
I do have one question: how do we know if the myeloma is aggressive or not? My husband's paraprotein went from 0 to 0.7 in five weeks. (At diagnosis it was 1.1, and that level of paraprotein had caused major bone damage in his spine). Does a jump like that indicate aggressive myeloma? The fact that it also went down very quickly also mades me slightly nervous, as I've read that aggressive myeloma responds more quickly - and then returns more quickly. Like anyone else, I base my anxieties on what I know, and my closest experience of myeloma before my husband was a friend whose myeloma was so aggressive that it had to be monitored weekly or more often. My anxieties about ditching Dr. Madman and finding someone more amenable who can help us monitor the situation, but who might not know too much about myeloma, are based very strongly on my fears of a situation that could spiral out of control without notice, and my experience of what such a spiral means.
"I do have one question: how do we know if the myeloma is aggressive or not? My
husband's paraprotein went from 0 to 0.7 in five weeks. (At diagnosis it was
1.1, and that level of paraprotein had caused major bone damage in his spine).
Does a jump like that indicate aggressive myeloma? The fact that it also went
down very quickly also mades me slightly nervous, as I've read that aggressive
myeloma responds more quickly - and then returns more quickly."
Lisa- I can not answer this question. I use the Freelight Chain Assay every six months. I rely heavily on how I feel- not scientific I know.
I recommend asking this question to the acor list- I don't like this list for most issues but this kind of a question might be different- DavidÂ
Lisa,
I've been lurking in this discussion, but I wonder if Dr Madman is doing you any good at all. It seems clear that you now know as much as that doctor about the treatment of myeloma. What you really need him for is to order tests and prescribe medicine.
As I understand it, Dr Madman is the only oncologist available to you. But any doctor can order the tests and prescribe treatments. I wonder if you can find a compassionate general practitioner who would do those things for you. The combination of his or her skill with your own knowledge would be so much better than what you are now getting from Dr Madman.
Don
Lisa,
After reading your last entry, get rid of this guy. He sounds unique even for a mad doc. He has a lot of the same traits of my first onc which I quickly got rid of and recommended for counseling after he yelled at me and my wife when I asked about thalidomide. Two weeks later I was enrolled in the first thalidomide clinical at the Mayo. My philosophy is it is my life and I believe you have to believe this and be able to follow it to maintain your sanity which is so very important.
To answer your question on aggressiveness, if the m-spike went up 0.7 mg/dL in 5 weeks and then went up 0.7 mg/dL the next five weeks that would definitely be aggressive. If it goes back down again that sounds like it could be a bad assay-it happens. Any Internist can request a quantitative protein electrophoresis (m-spike test). If you do get an Internist, request that the test be run at a competing hospital for comparison.
Regardless, get rid of this guy. You have already wasted too much of your energy.
Terry
Aggressive is our doc, for sure, but I hope not my husband's MM. Someone from the ACOR list wrote me privately and said that his doc told him his disease was aggressive in part because it went into remission very quickly in response to frontline therapy. That did not ease my mind one bit, as my husband's disease also responded quickly and went into CR.
 As for the aggressive doc, until we find a better alternative we won't burn bridges, but we'll keep looking. My husband went alone to the last appointment, prepared to have it out, but the doc unfortunately had an emergency and had to go, and they didn't discuss much. My husband did say the doc seemed "more human" than usual. Hmm - my absence makes him more human? It is perhaps an argument for why I should stay away (my mental health might also improve!) but I doubt I'll make a habit of not going to appointments, since the stakes are just too high. Meanwhile, the doc called the other day to give us my husband's calcium and glucose blood levels (all normal), and shocked me by identifying himself on the phone by his first name. (Normally he would call himself "Dr....") Actually it took me a minute to figure out who it was! He was very cordial, albeit brief. I mentioned this to a friend who knows our saga, and who also knows the doctor, and said that maybe it signalled that the doctor felt bad about his previous treatment of me. My friend laughed and told me, in his Greek-inflected English, "don't imagine too much!" Anyway, we'll see, and we'll keep on looking for alternatives.
Lisa-
I believe that a positive attitude helps caregivers and survivors-
"He was very cordial, albeit brief. I mentioned this to a friend who knows our saga, and who also knows the doctor, and said that maybe it signalled that the doctor felt bad about his previous treatment of me. My friend laughed and told me, in his Greek-inflected English, "don't imagine too much!"Â Anyway, we'll see, and we'll keep on looking for alternatives."
DavidÂ
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