Very Upset - potential cancer issue

I'm sorry that you are going through this. Is there a support group you can join who have this? What about counseling? The best medicine is to live your life to the fullest.

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Originally Posted by unaluna Did you only eat from 9am to 1pm? Thats only 4 hours. Thats more like one meal per day. .

Yes. And 1x or more a week I did a 36 hour fast. Over the presidents day holiday I did two 40 hour ones with a 4 hour break between.

most of my electrolytes seem normal. I asked my doctor for a magnesium test but she didn't get it.

TO me it is more likely that my immune system has been suppressed. Not eating causes stress to the body and that causes immune system suppression. It is a known risk of fasting but you supposedly get more out of it.

it would seem if your body makes an abnormal protein in your blood and your immune system is strong, the immune system will take care of it. But if your immune system is suppressed or compromised and something goes wrong, it won't catch it as well and it will accumulate.

Seeing that many people on the MGUS support board have auto immune issues says to me their immune system is not at their best.

And mine is not at its best now because I am suppressing it.

But if I can return it to normal....

—-Once I had a rare eye disorder-the type that doctors have a hard time diagnosing. I found the regional president of the association. He sent me to a world renowned doctor at USC. The doc gave me injections in my eye muscles and in less than a year, I was ok. go to the top guy/doctor and do things that are relaxing and in moderation until you have the appointment. Hugs!

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Originally Posted by luvyrself —-Once I had a rare eye disorder-the type that doctors have a hard time diagnosing. I found the regional president of the association. He sent me to a world renowned doctor at USC. The doc gave me injections in my eye muscles and in less than a year, I was ok. go to the top guy/doctor and do things that are relaxing and in moderation until you have the appointment. Hugs!

Good advice. I have that appointment in April. This doctor is the head guy in the USA for the disorder and, if necessary, multiple myeloma. I have heard that if I got cancer this guy has actually been shown to extend life longer than average. So I feel like if he gets me from the start I could have good luck.

One of my greatest regrets with my mom is that we took her to the local hospital when she got sick and then the local hospital did NOT help us get her into the world renowned hospital right down the street. They wouldn't help us transfer her or anything. Won't do that again.

I get some tests back today (I think) that should tell me if I have the type of this that will develop into Multiple Myeloma or Non Hodgkins Lymphoma. I am hoping for the non-hodgkins as that has a pretty darn good survival rate. Something like 70% over 5 years and 62% over 10. MM is more like 50% over 5 years and they don't talk about 10 so -- that can't be good.

The back was bothering me last night but overall it has been much better since ending fasting. I am hoping that it just needs some time to recover.

I still am hopeful this all was due to the fasting and suppression of the immune system. I was reading last night that one of the ways they fight MM is to try to stimulate the immune system. Well maybe I have the opportunity to do that on my own.

Thanks to everyone for responding. Real life people haven't been half so helpful.

I'm glad you're getting some tests back today that will offer a clearer indication. It does sound like there is a very, very good chance that your back pain is caused by something non-cancerous, but it's so important to rule out cancer early! My poor husband had symptoms for a year and a half that the doctors told him were nothing but which turned out to be cancer. I wish we had been more aggressive about demanding tests or that his PCP had told him to get the tests people his age are supposed to have anyway!

Very interesting, the connection between fasting and back pain. I can see how fasting would have a negative effect on electrolytes, but never would have connected that to back pain. I'm glad you have something scheduled with the specialist because that first oncologist you talked to sounds too dismissive to go back to. Have you ever done one of those Ancestry DNA tests and run the results through something like Promethease? Seeing my genetic risk (combined with known family history) pushed me over the edge to get a biopsy instead of waiting and watching for six months.

Scanxiety sucks big time and it is very hard to find support when you are worried about an initial diagnosis. Fingers crossed cancer is ruled out for you today.

So I got some results back;

Of 8 results I got five of them back and I am happy to say of the five (with multiple parts) I got back, they were all normal. I was doing cartwheels when I got the results this morning because so much came back normal and I didn't know then I was missing results.

There are three results left and they will really tell the tale. But I probably will have to wait a week for them.

The support group thinks it is really promising that these results all came back normal. Even if the others do not.

One thing that was low, but still normal, was my WBC. Suggesting strongly to me again, that my immune system is compromised and if I can get it back to the point it should be, my "cancer killing cells" (which were low normal) will take care of these abnormal proteins. It is unclear however, if these abnormal proteins have made the WBC's low or the other way around. This blood was taken when I was still fasting.

Either way I went to the pharmacy today and bought multivitamins (which I take sporadically now) and B-12 (which last blood test was on the low side) and Vitamin C.

I also have brought up my calorie count.

I had X-rays taken Friday and I am pretty sure they are ok because typically they call you if they see anything of concern but those won't result for a while.

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Have you ever done one of those Ancestry DNA tests and run the results through something like Promethease? Seeing my genetic risk (combined with known family history) pushed me over the edge to get a biopsy instead of waiting and watching for six months.

I did 23 and me. But I didn't run it through anything.

If this issue turns out to be true I will be very disappointed. It is supposed to be genetic but I have no one in my family with any blood cancer. I work so hard to avoid cancer I make up symptoms to get tests or pay for them myself, I take Vitamin D... I have tried to lose weight (still working on it) I get 23 and me to see what risks I have, I am very carful with prescription drugs and over the counter drugs and don't get needless tests with radiation - ALL FOR NOTHING.

Out of no place comes something I have no preparation for. Even if I manage to make everything go away I probably will have to keep testing forever just to be sure. And of course, I will worry like mad.

I got another result today with the important type.

My type is IG-M - Kappa. This is what I was hoping for but perhaps next time I need to read everything before making a wish.

The good news.
- this type rarely progresses to Multiple Myeloma - 2%
- There are several different types but the majority will progress to a blood cancer that seems to currently have a reasonable prognosis, 60% alive after 10 years. Non-Hodgkins Lymphoma - there is another type with a name I can't pronounce which seems reasonable as well. It has an 82% survival for 10 years if you catch it early. Which presumably I will if I am testing.

The bad news
- it tends to progress more rapidly than the other kinds. Instead of 1% per year..more like 1.5 % to 2 %. That may seem small but it increases the likelihood of having some issue by the time I am 70. 40% chance by the time I am 70.

The original tests came back today and the person who read the result said there was "faint" evidence of a protein. So that too seems positive.

I suppose more results tomorrow. Torture.

I think it is admirable to do research on ones issues.
However, go outside and not nature if you can.
So far,things look good.
Just dont cross the line into stressing yourself out too much.
My brother is past board chair of the Am Cancer Society
When he had his cancer(healed in a clinical trial) I read a lot about the mind body connection, which is HUGE.
You are going to beat this thing, and we are all with you.
Hug a furry animal, find some silly streaming movies and LAUGH.
We love you!

This is not helpful. Of course I go outside. Where is the sympathy? I swear I guess everyone would just rather if I hurried up and died quicker so you could all get back to talking about your issues

If you read some of the mind body studies,, you would understand. You can literally make yourself sick, make your body chemistry worse. I know what its like to obsess, I know what its like to wait for a mammogram result when it runs in my family. I have many times seen people(including my mother) develop cancer after an extremely stressful life event. With 6 cancer survivors in my family and my brother knowing more than almost anyone on earth about It, I am not giving frivolous advice. This principal applies to most health issues.

So the oncologist wrote me today to tell me that all my labs came back as normal except the one protein spike. She said "this was reassuring." She wants me to get the labs done again in 6 months. Interestingly she didn't say I had MGUS, but this time said I needed to be retested due to the abnormal results consistent with MGUS. So it is almost like she is backing off diagnosing me with anything.

I am not sure at all what this means. I would ask her but she is so dismissive about it I doubt she would have an answer. I get it that this is probably the least she has seen all day but for me I want to know.

I am also confused if I should go see the cancer doctor at the big cancer hospital. Would that be wasting their time and (possibly my money because insurance is already charging me for stuff). I got a statement today where my insurance was charged $2500 for ONE blood test and I will have to pay $200 for it.

I also got some bad news on the scoliosis because they did X-rays on my back. It is categorized as "severe" so that must mean that it progressed. But for the moment I feel like that is the thing I need to put off to the side. I am also not sure that they really did a measurement and characterized it as severe by eye balling it. So I am not going to worry about that right now.

I am getting incredibly frustrated with the MGUS disorder and the people on the support boards.
- I keep asking for help in interpreting my results and they are useless.
- They all start with the sentence, MGUS will never go away. But it seems clear to me that they have never questioned it. In fact when I did turns out there was a lot of people who it has gone away for.
- No one wants to understand the disease or do anything to find out how to avoid progression. All they want to do is live in denial land.
- It seems clear to me that many of them are hypochondriacs or have health issues that they all want to blame on MGUS. Almost everything in their lives they blame on MUGUS although all doctors state there are no symptoms.

I have one more blood test that is due Monday. If that is normal, and based on other blood tests, I have reason to think it will be. I will have all the blood tests being normal and ONE test having a "faint" spike. So can we really say I have a disease at all?

I did have a visit with a physicians assistant yesterday and she told me the X-rays did not measure for scoliosis. So the radiologist was eye balling it. Phew. She gave me a referral for three physical therapy sessions.

SOOO frustrating. I was supposed to get the final blood test to see a very important thing for this disease. Something that is an independent risk factor. Not only didn't I get that today. Turns out they ran blood tests that my doctor had already run. But I was shocked and depressed that they were so much worse.

All my blood tests were normal two weeks ago.

Today my WBC was seriously low. 4.1 it had been 4.8.
My glucose was through the roof. 176 (not fasting)
and most scary to me, my liver enzymes were high. That never happens.

It is possible what I was eating was a problem but I don't want to be running around with low WBC with corona virus on the loose.

I emailed my doctor and told her and she told me they shouldn't have run them again and I wouldn't have pay for them (I hope that is right) but I STILL don't have the test I want and I now get to worry about this test.

Well the good news is that FINALLY, today I got the final result.

The final result was normal. That is really good news cause that final test can mean cancer even if all the other tests are normal.

So I don't really get it. I have had about 8 blood tests and all 8 but for one was normal. The one that wasn't normal was, as they describe it, faint. It was a tiny bit abnormal. Zero is normal and my result was 0.2.

There are two other tests out there that I could and want to have. A bone marrow biopsy and urine.

But I won't be able to get those for a few months.

I don't know what to make of it. There is some evidence that an M protein spike can be caused by an infection, which also would seem to drop WBC and can make liver enzymes higher.

I have an appointment with a specialist on April 9th. The great news is that I was going to be on emergency on April 9th but with the corona virus the schedule has been changed.

So the support groups tell me that the "M - Spike" alone is indicative of an auto immune process. Not sure what that means but I am more and more suspecting that I had the Corona Virus over the New Years week and that said virus is the reason for these problems.

Why?

What I do have wrong is consistent with an infection - a viral infection.

- it is known that an M spike (alone) can happen with viral infections such as HIV or Hepatitis. Both I am pretty sure I don't have. But both are strong viruses.

- My WBC only remains low. Though this can be due to MGUS... typically it shouldn't be this low with such a low MGUS result. I also read someplace that in the absence of tests for corona virus they are looking at WBCs which typically come back low.

- My liver enzymes came back high recently. I was stumped at that and then someone suggested that liver enzymes can come back high due to infection. Later I looked it up and it is one of the signs of corona.

- It is well known that auto immune disorders are linked to starting after strong viruses such as Epstein Barr.

The only contra indicative factor is that since about fall of 2018 my WBC had dropped but not a lot. Going from 6.0 to 5.5. Currently it sits a 4.1 and during the illness in December it was a 3.2. Coronavirus has WBC under 4.0.

I'm sorry you are going through this. It must feel incredibly difficult. I don't know much about this disease, condition but do want to say I'm wishing you the best. Hugs.

So the question is, how did you get covid in december. Maybe china isnt lying about it starting with american servicemen.

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Originally Posted by unaluna So the question is, how did you get covid in december. Maybe china isnt lying about it starting with american servicemen.

I live in a major city that has a ton of Chinese nationals for bio tech or school. Either they had family come in to the city or they went to visit family and came back. I take the subway line that goes to the airport not to mention that the area i work in is a tourist area.

Today a weird thing was reported.. a lot of people infected here were infected at a bio tech conference. And a Chinese national who was infected and lied about it was called back to China and is facing charges there. Did we find out about it and order China to take her back and prosecute her? Did China send "agents" around the world on purpose? I mean this was reported in a liberal paper... so..

Well my consult with the specialist got converted to a phone call. I won't be getting labs or any tests. Thanks Cornavirus. I almost feel like cancelling as what is the point of that? But I won't because perhaps he will give me the go ahead for tests in June.

I remain frustrated about this issue. As there is not a lot of information out there on it and thus prone to bad advice. It is really frustrating me. One person told me that chicken had been associated with blood cancer. But when I looked it up I found many studies debunking that. Not to mention that the one thing I rarely eat is chicken. Probably only have it 1x per week, if at all.

I suggest you go ahead and talk with the doctor, Emily. You might be worrying about something that'll turn out okay.

I did get some blood work done last week at a doctor's office--so, if the doctor thinks you need to rush to get checked out, then I think that can be arranged, Okay?

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Originally Posted by Travelinglady I did get some blood work done last week at a doctor's office--so, if the doctor thinks you need to rush to get checked out, then I think that can be arranged, Okay?

Thanks, I had hoped that maybe he saw my blood work and decided it was not worth the labs but the person I spoke with told me that wasn't they case as they don't have my labs yet.

Very disappointed with today's visit. I saw "the" preeminent doctor in the field. He is the doctor for Tom Brokaw.

But he had one drawback that against my better judgment I went with. He was a man. I don't mean to be sexist but, in general I find men, especially powerful men, do not have the manners of women and seem think I am there to listen to his words. When really I know everything he is going to tell me before he opens his mouth and I just want the opportunity to ask questions that aren't answered out there.

We had a 40 minute zoom conference where he just talked and talked and talked. I figured I better not piss off the leader in the field so I waited my turn to speak.

It didn't happen.

- as with all doctors they go to imho insane lengths to convince me the condition is nothing without telling me factually why they are unconcerned.

- If I am there, then I am concerned about it and I think it rude for them not to have the same level of seriousness -- without explanation. I work in something that is considered the top of the ladder and I always keep in mind that people walking in the door -- it is life and death for them even though it is just another day for me.

- He was so interested in talking about himself that is all he did. To the extent that he spent at least 15 minutes of the meeting talking about the corona virus -- I did have a question about that but he didn't let me get it out.

- I only went there because I wanted to be under the care of the best, but it seems I have been dismissed. He talked about how he would give my hematologist directions. I suspect strongly that will just piss her off. (that I went behind her back to the big boy).

- He brought up that I should do no further tests at the moment. He thinks that I should be tested every three months and only do the big boy tests if things progress.

- He did give me his e-mail and phone number if I did want to bring things to his attention.

- He says that, should I develop blood cancer, we have treatments now where my lifespan will not be shortened. I think he is crazy. I know he wants to put a positive face on it but saying such thing gives me great pause. Perhaps he is a god but, that makes me think he is overly optimistic.

- He seems about 75 or so -- so I am wondering if he will even be alive when I might come down with something.

I am considering seeing if I can't start a website on this. If doctors won't take things seriously.... maybe we have to do it on our own.

So I got back another test. And drum roll... it was normal.

There are like 9 tests for this condition.

7 blood tests
2 Urine tests
1 bone marrow biopsy.

Of the blood tests only one was abnormal and it was a "trace".

I have not done the bone marrow biopsy.

But ALL... all the other tests have come back normal AND all my other tests, CBC, Liver Kidney tests have also come back normal.

I am starting to think this is nothing and I do have have any sort of malignancy.