Very Upset - potential cancer issue

So as many of you all know I have been complaining of a bad back for 3 months and afraid of scoliosis getting worse.

It isn't scoliosis. (though no one knows if it is related to the back pain)

My doctor decided to run some tests on my blood this week and she found something. Monoclonal gammopathy of undetermined significance (MGUS). Though my doctor tells me it is a benign condition precursor with a 1% chance per year of it changing into multiple myeloma. A simple look at the statistics tells me that is wrong. (just what they tell you) And that it is more like you will probably get multiple myeloma within 2 years of MGUS diagnosis.

Ok well, then I looked up multiple myeloma and even multiple myeloma is caught and treated early best case lifespan... 7 years. SEVEN YEARS!

I have an appointment with an oncologist this Friday (another concerning thing as that seems quickly to get me in) And I understand they will be determining how likely it is going become multiple myeloma based on the tests.

Honestly to me it seems like I just got diagnosed with multiple myeloma. And I have as little as 7 years left to live and frankly probably won't make it past 15.

This was my greatest fear... that I would spend my entire life working hard to get to retirement only to diet moments after retirement. (retirement is 10 years away)

I am obviously terrified. There is no curing Monoclonal gammopathy of undetermined significance (MGUS). From this day forward I will always have to check this to make sure it isn't progressing. And if it is, the options aren't great.

And also, from all accounts I am young for this. Most people diagnosed with this are significantly older. Is that why this condition doesn't progress easily?

Also what I can see is that being over weight is a risk factor for progression. So right now, I need to lose 50 lbs. Right now.!! Also, eating animal protein is a risk factor (and I have been doing that my entire life) and so, I have to pretty much go vegan. And all of this is made more difficult with an aching back.

The only positive thing is that this was found early. My doctor found it because multiple myeloma is known to cause back pain and increased calcium (which my most recent tests had). But a calcium test in December was low.

There are no symptoms usually with Monoclonal gammopathy of undetermined significance (MGUS).

Seriously if you have made it this far I need your support, I have no one to tell.

Ugh I have to stop looking at the internet. I went to a message board on this and yes.. yes, Monoclonal gammopathy of undetermined significance (MGUS). can cause back pain. I am fearful that means it is pretty advanced. But yes... a lot of people report fibromyalgia type symptoms with it.

So am I going to spend the next 10 years ALSO in back pain?

You have my support. I'm sorry I don't have any answers to your Q's, but it must be scary and unsettling.

Its good they caught it early.

Try to do things you enjoy in between freak outs. Worrying won't solve anything. Though I understand it's hard not to do.

I got my doctor to give me the base results and to me, they look good.

ALPHA 1 GLOBULIN 0.1 - 0.3 g/dL .... 0.2 (this seems normal)
ALPHA 2 GLOBULIN 0.5 - 1.0 g/dL .... 0.8 (this seems normal)
BETA GLOBULIN 0.8 - 1.4 g/dL ....1.1 (again normal)
GAMMA GLOBULIN 0.5 - 1.8 g/dL ..... 1.0 (again normal)
TOTAL PROTEIN 6.0 - 8.9 g/dL.... 7.6 6.9 (I can't tell what this is but seems normal)
GAMMA 1 M-SPIKE <=0 g/dL ... 0.3 High (these are both flagged as high but they seem VERY close to normal -- which is <=0)
GAMMA 2 M-SPIKE <=0 g/dL ... 0.2 High

The information she gave me was that greater than 3 g/dl was a flag for cancer and greater than 1.5 was concerning.

I didnt see the 7 year thing. I saw that it was pretty rare for it to get bad, and that they monitor it, and that maybe you'll go on fosomax or something like that.

I think you are stuck with us, and vice versa!

Glad the lab results are normal. Hope you can relax some now and enjoy life without too much worrying.

I am sorry to hear this, but I am glad to hear that your lab results are normal. I'm having to deal with cancer myself (I can't believe I'm saying this!).

I was diagnosed with prostate cancer a few years ago. I had my prostate removed. When I had it removed I thought that it would end that dilemma. Not so! And now I have had PSA that's been climbing, so something's up. I'm in the process of lining up tests, such as an X-ray and MRI to see what's going on. For a while the PSA had been climbing but not that much to be concerned about. I had taken medications to bring it down. But suddenly in the last few months, it climbed rapidly. We'll see what's going to happen.

Quote:

Originally Posted by unaluna I didnt see the 7 year thing. I saw that it was pretty rare for it to get bad, and that they monitor it, and that maybe you'll go on fosomax or something like that. I think you are stuck with us, and vice versa!

That is what they have on the main pages but there are different kinds of this and depending on how aggressive it has a 50% chance of going to MM.

But several people have said that my results were very low.

ETA : I did find a good active group for this. And I am getting a lot of info there. It helps that I am in one of the top cities for cancer medical care and have the leading doctor in the field available to me. I think.

Another of my concerns is that I just feel this back pain is linked to it and I am not sure I am going to be able to do my job when we go on our busy period. I am concerned I might have to ask to be placed in a lower paying job that doesn't require the stress of that time period.

Quote:

For a while the PSA had been climbing but not that much to be concerned about. I had taken medications to bring it down. But suddenly in the last few months, it climbed rapidly. We'll see what's going to happen.

I hope it is nothing to worry about but I know the feeling.

I know nothing abou this disorder, but I hope your appointment is soon and that you get some answers and a game plan!!!!!!!!!

Hope you get good answers when you go to the appointment and that you get all your questions answered. So sorry you are going through this.

Still upset -- I keep learning scary things every day and no one in my family has this so I am not the least bit prepared. I had a terrible nights sleep last night and then had to go to work with both my back pain and lack of sleep. I am definitely having panic attacks. One thing that happens with me when I panic is that I get stupid. Today I did so many stupid things I really hoped that I made it home.

I am going to choose to look at the good. I got an appointment today with one of the leaders in the entire field at a renowned cancer place in my State. It was relatively quick too. April.

I hope tomorrow I will get some tests and some answers. {{}}}

Well the oncologist was kind of dismissive.

- she walked in the door stating that she was "obliged" to see people with this disorder but it was the best part of her day as it was so minimal a concern.
- she said that my results were so miniscule... she isn't 100% sure I even have anything (she ordered more tests)
- she feels certain my back pain is due to something else. She said with the numbers I posted she just can't imagine a relation. We got me X-rays. She thinks my back pain could be due to electrolyte imbalance due to fasting.
- she feels I shouldn't change anything in my life for this issue but did say maybe I want to take a month off fasting to see if it helps the back pain.

Over all I thought she was dismissive. She didn't even have the full blood tests yet. When I asked her about the X-rays I said would she be interpreting it and she laughed and goes "oh god no" -- ok that is something you say with a friend, not a patient. Made me feel like she couldn't wait to be done with me.

Most of what she told me was *her* opinion that is something I don't like. I like the facts, and your opinion if I ask for it.

But it did make me feel better.

Also, they took my height and I have apparently grown .25 inches. This is the same result I got at the Dexa Scan I took recently. My theory is this... losing weight either (1) reduced the gravity on my back discs and they have decompressed; or (2) the larger I am the more my butt sticks out and thus, when I back up on a wall I am just slightly forward enough not to be directly straight.

I'll keep you in my Thoughts and Prayers, @Emily Fox Seaton! I am so sorry the Oncologist wasn't too helpful, but he seems rather sure of you not having anything in particular. Let's hope that's the case! Perhaps you can go to another one if you want to be 100% sure? In any case, I am wishing You and your Family the VERY BEST of Luclk! Sending many safe, warm hugs to BOH you, @Emily Fox Seaton, your Family, your Friends, your Doctors, and ALL of your Loved Ones! Keep fighting and keep rocking NO MATTER WHAT HAPPENS, OK, MY DEAR, SWEET, KIND, AWESOME AND WONDERFUL FRIEND?!

my friend has scoliosis and its a slow battle towards that progression eventually. just try not to aggravate it by playing intensives sports or getting into any accidents. wishing the best for you!

Here is something amazing. Yesterday I took time off fasting. Now I have done this before but perhaps not enough. This time, I chose to eat every two hours no matter what. And my back pain was 80% improved. I really could not believe it. So I have decided to do that for a month and see what happens. I also found a blog that had someone fasted for a long time and she also wrote about the back pain she felt (which seemed similar to mine). I mentioned over and over again that the back pain started when starting fasting but I guess I just could not believe it. I am hopeful this is the issue.

As for why fasting would cause back pain... I really don't know. But the fact that it resolves so quickly leads me to "glycogen" in the muscles. One thing that fasting does is deplete your glycogen stores in the liver and the muscles. Indeed, you're not supposed to be able to burn off fat without depleting the glycogen. So perhaps my back muscles are just inherently weaker and when I deny them energy from the glycogen the can't perform their job. It also may not help that I eat from 9 AM to 1 PM so I am fasting when my muscles are tried (after a long day at work). I am also not sure if the glycogen (and the water attached to it) doesn't pull in electrolytes into the muscles. That are depleted when the glycogen in low. If I have strong muscles... I don't feel anything (say in my legs and feet) but in areas with weak muscles they start to fail and hurt.

Glad your back is better! And it doesn't look like a cancer concern.

I think some doctors are disappointed when they have a specialty and they don't need to use it.

Quote:

Originally Posted by davidse my friend has scoliosis and its a slow battle towards that progression eventually. just try not to aggravate it by playing intensives sports or getting into any accidents. wishing the best for you!

Oh no worries there!

My doctors have always advised me to try to go as a long as possible without surgery because every year technology improves. There are also some studies of people who had scoliosis before the surgery was a thing where even with very severe curves -- were ok and had no pain.

Quote:

I think some doctors are disappointed when they have a specialty and they don't need to use it.

Yes I will cut her some slack for that... but later I did look her up and a lot of reviews said she had a bad bedside manner.

I don't blame you one bit for being frightened. I give you immense credit for pursuing various paths of possibility and care.

You are correct - MM is no joke; I have lost two family members to it.

I would be very encouraged that your blood work looks good...that makes all the difference.

My hope is that you will follow through with however many MD's you need to see until you find one that you resonate with and thoroughly trust.

I just saw this thread. Reading through it, it sounds as though circumstances have gone from worrisome to manageable. So it's certainly a good thing your fears appear to not be coming to pass. Hope things continue to improve for you.

Quote:

Originally Posted by Skeezyks I just saw this thread. Reading through it, it sounds as though circumstances have gone from worrisome to manageable. So it's certainly a good thing your fears appear to not be coming to pass. Hope things continue to improve for you.

Thanks. It is still annoying because a lot of people who actually have this do say there are all kinds of symptoms and the doctors completely disagree. I don't know what to believe at the moment. I am going to give fasting a break for 30 days and see what happens. Perhaps 60 as I will be on emergency in April and have my appointment with the leading cancer doctor at that time. If the back does not improve I will know it isn't fasting. At this point.. I have equal evidence that fasting can cause back pain in some people and (MGUS) can cause it.

I just keep going round and round on this and I am suspicious that perhaps I brought this on myself due to fasting and it will resolve when I stop fasting.

- Though they say that once you have it, you have it, I have seen on studies that sometimes it does go away - it is rare though. Like 2 out of every 100.
- Everyone on the MGUS boards seem to say they have an immune disorder. I do not have an immune disorder at all.
- MGUS or any blood cancer does NOT run in my family. I am also not the typical person who gets it. But they say it is genetic? No one in my family has it.
- I have always noticed on my CBC tests when I am dieting - my platelets, my RBC, and my WBC, all go down. This happened here. And I did get a nasty head cold weeks after starting fasting (which I never get). Suggesting my immunity was down.
- The problem is an abnormal protein in the blood. Is it just possible that I inhibited my immune system for three months and an abnormal protein got out of control. And, as soon as I restore my immune system, it will take care of the abnormal protein?
- Most people who aren't fasting and get this have no option to "increase" the immune system but here I definitely do. I know based on 10 years of results that when I start eating normally again, my WBC, my RBC and my platelets will all increase.
- I did look it up and while there is a lot of into positive on the immune system and fasting there is also some that says fasting suppresses the immune system.

Quote:

The second study examined this question by comparing the immune effect of short-term fasting to longer term starvation on a mouse’s ability to fight off infection. While short-term fasting (less than 24 hours) did not compromise an animal’s ability to heal a wound or fight off infection, longer fasts did indeed begin to cause problems. When starved for 48 hours before skin injury or infection, significant immune response impairments were noticed

.

Did you only eat from 9am to 1pm? Thats only 4 hours. Thats more like one meal per day. Anyway, i can see how your electrolytes could have gotten out of whack. That sounds to me like a reasonable explanation. When my "water level" is off, i am out of sorts in every way imaginable - physical, mental, emotional. But when im "flushed", im like a kid again. For a short while. Its like Cocoon.