[Annamaria]

Doctors having different opinions on various matters

by Annamaria on Wed Feb 17, 2016 11:52 am

I wonder if this happens to you too.

One doctor is my main referral, but I am sometimes seen by different ones, for instance if I go to the Day Hospital on days in which he is not there. Once in a while, and especially when there are decisions to be taken, I consult a specialist privately. Well, on various matters the doctors answer my questions differently, leaving me confused and uncertain about what to do.

Here are some examples:

Vitamins and Myeloma

I had a dermatological problem probably caused by low vitamin levels. Two doctors told me that it is not advisable to take vitamin supplements regularly, as they seem to stimulate the bad cells. My main doctor, by contrast, said “Sure, take as many as you want”. Right!

Cortisone and Sun

I take dex, 40 milligrams per month. Can I take the sun this summer or do I have to avoid it because I could get spots on my skin that stay for good? “Better to use a total screen from early in the morning and avoid the sun , even if you are not at the sea”. My main doctor said: “With that dosage, what is the problem?” Okay!

New Medicines to Fight Myeloma

This question is the most serious one. My doctor suggested that I have another transplant soon, during my second remission. I went and see a myeloma specialist privately, and while she agrees that transplants can make remission longer, she said that nowadays it is not like in the past, when we had very few weapons. The new substances, namely the immunotherapy ones, do a good job. Two doctors at my hospital said that all they do is make you gain 5-6 months of life. She said that this is the case if you have a third or fourth relapse, but that if you read the statistics carefully, you will see that they work for 2 or more years in a situation like mine, when the lenalidomide (Revlimid) will stop working.

So how should I behave? I believe these doctors are all well prepared. In the first two cases, the explanation could be that they read, and believe in, different research about those subjects. In the third case, I really don’t know what leads them to different conclusions.

One day a lady doctor from my team said to me “You have to realize that medicine is not an exact science, like mathematics”. Still …

[Multibilly]

Re: Doctors having different opinions on various matters

by Multibilly on Wed Feb 17, 2016 12:50 pm

Hi Annamaria,

This is reminiscent of the time after I was first being diagnosed with smoldering multiple myeloma. I met two multiple myeloma specialists who said I would likely progress in 12-18 months and that a transplant was the only way to go. I then found another specialist who would never suggest a transplant. My local oncologist (a very good doctor who I like, but who is not a specialist) could go either way and said it was my choice.

So, as we like to say here in the USA, "I felt like Bambi staring into the headlights of a car".

I finally ended up doing a lot of research on my own, talking a lot to others on this forum and decided on which specialist I would ultimately trust for key treatment decisions and medical advice on my journey. I also needed that specialist to be open to debates or challenges to his suggested treatments and recommendations based on my own research. I luckily found such a specialist. It was very liberating deciding on who I would essentially entrust with literally life-or-death decisions as well as day-to-day items.

But there are also some things where you simply aren't going to get any consistent opinions or where the doctor may not even haven opinion – such as on the topic vitamin or supplement usage. I think in those cases, you simply need to go with your own research and gut.

As an example, I take a lot of antioxidants such as curcumin, but you can easily find papers that will tell you that antioxidants can be shown to promote cancer (at least in mice models) (see this article, for example).

So, after some of your own research, I think you just need to roll the dice in those situations. At least, that is what I've done. There is rarely a perfect decision or one which will have consensus in the medical community when it comes to multiple myeloma.

[MrPotatohead]

Re: Doctors having different opinions on various matters

by MrPotatohead on Wed Feb 17, 2016 1:16 pm

Multibilly,

Your last sentence:

There is rarely a perfect decision or one which will have consensus in the medical community when it comes to multiple myeloma.

How true that is!

[Nancy Shamanna]

Re: Doctors having different opinions on various matters

by Nancy Shamanna on Wed Feb 17, 2016 1:46 pm

Hi Annamaria,

I take a multivitamin pill and also a vitamin D tablet, since I think I get more colds when I don't take the vitamin pill!

The vitamin D is to help with the fact that we don't get enough sun on our skin in the north. Also sunshine is supposed to be harmful in causing skin cancer! I wear sunscreen even in my makeup since I am nervous about sun exposure. Sunscreen was not available when I was young, which I suppose helps to explain why many people get melanoma (not myeloma, as it is confused with when you tell people you have myeloma). I think that everyone is advised to use sunscreen, not just cancer patients.

I don't take curcumin anymore. I did try it a couple of years ago, but that was when I was starting to relapse, and I had no way of knowing if the curcumin was hindering or helping me. I wasn't taking chemotherapy at that time. It is not recommended to be taken, according to my doctors, if one is taking chemotherapy anyways. I think I am doing fine without the curcumin.