[Olivia]

Please allow me to introduce myself ...

by Olivia on Sun Jan 31, 2016 11:38 pm

Hi all,

I'm new and I'm scared.

Been seeing a hematologist/oncologist since the fall of 2014. Told I have MGUS. Explained briefly to me that this is not a serious condition, but, in 1% of all patients, it can develop into multiple myeloma. I was concerned. "Oh, it's very treatable." Bone marrow, I THOUGHT, was negative, until I read my "patient portal" that shows 6% plasma cells.

Here's my IgG's:

Oct 2014: 3440
Nov 2014: 3601
Mar 2015: 2877
Jul 2015: 3847
Nov 2015: 3881
Jan 2016: 4152

Doc tells me once my number hits 5000, we treat it "with pills". I ask "Chemo?" He said "Yes."

I see his PA tomorrow and given my jump to over 4000, I AM TERRIFIED. I did NOT know there is NO CURE for this. NONE!

I need a new doctor. I would like to try to be seen by Roswell Park in Buffalo, New York, as I am only a few hours away. Problem is, Medicare is my primary insurance, as I am disabled.

Has anyone ever had numbers this high and not crossed into multiple myeloma?

He told me at my visit in November that he thought I was "smoldering", but I didn't know that was a "condition". I thought he meant it as a figure of speech!

Thanks in advance,

Olivia

[JPC]

Re: Please allow me to introduce myself ...

by JPC on Mon Feb 01, 2016 7:35 am

Good morning Olivia: Sorry you have occasion to have to come to this forum, but hopefully it will help you get settled down to deal with your situation.

First, as you mentioned yourself, get in to see a myeloma specialist, who does myeloma full time. As far as your numbers, a trending up of one of the immunoglobulins (the IgG in your case) could be progression from MGUS to smoldering to active multiple myeloma. However, there are other things that could cause variability in those numbers. This issue of concern is the trend. It did not look like a strong trend, yet, but the most recent one in January was high. The more direct measurement is the M-spike, which is measured by the "serum protein electrophoresis" test (SPEP). Have you been tracking your M-spike? If the M-Spike has been moving up, that is more direct a measure. A secondary measure (for some people it's the primary measure) is the light chain measurement of the kappa and lambda proteins.

I hope that you are MGUS or smoldering for a long time. If it turns to active multiple myeloma, it was much better to catch it at this stage before some of the bad impacts kick in (in multiple myeloma, the effects are known by the CRAB acronym for: Calcium in the bones, Renal failure, Anemia, and Bone damage).

[Olivia]

Re: Please allow me to introduce myself ...

by Olivia on Mon Feb 01, 2016 9:24 am

Thank you SO much for your kind reply JPC. I am NOT at all familiar with this "jargon" and my doctor has downplayed this to the point where you would think he was talking about a common cold. Yes, I need to get into a myeloma specialist STAT, and I intend to contact the Roswell Center in Buffalo today.

M-spike ... I've heard of it. There is SO much "technical jargon", and I am not technically inclined! My urine is positive for the Bence Jones protein, and I know that is not good.

I just looked back at all my labs and I can't find "M-spike", but I know I've heard of it ... seen it. Nor do I find it in his notes.

Everyday I wake up with a cloud over my head. I am so scared, but, even though I'm new here, I do feel less alone.

Thank God so far, no "CRABs". I know my creatinine is still good, and I am going to drink a LOT of water. I didn't realize how important that was. Also going to drink green tea as I believe that is good as well.

I see the PA at 11:30 today, and I will have all these questions ready. But this is just a regular hematologist / oncologist office. Granted, it's huge, but with multiple myeloma being rare, I know I'll need to ravel. Just like everyone else, I don't want to leave my home. I sure wish there was a cure.

Thanks again for answering. All the best to you.

Olivia

[Olivia]

Re: Please allow me to introduce myself ...

by Olivia on Mon Feb 01, 2016 9:37 am

One more thing. I am anemic, and have been for a couple years. But, the iron panel they did shows my Iron is good, so, the anemia must be from the bad cells crowding out all the red blood cells. And thirst ... I am always thirsty, which I see is also a problem.

I feel really misled by my doctor. He made it sound like you take pills for this and it goes away. Only by doing my own research did I find out there is no cure for this, and, when I read the survival rates, I broke down crying. 5 years? Really?

[Multibilly]

Re: Please allow me to introduce myself ...

by Multibilly on Mon Feb 01, 2016 10:45 am

Hi Olivia,

Welcome to the forum. JPC has provided some great advice (as usual).

Are you saying that Roswell Park doesn't accept Medicare? Even if they don't, you can always do an initial consult with the a multiple myeloma specialist there and then have that specialist coordinate with your local oncologist. Dr. Philip McCarthy and his team at Roswell are quite excellent myeloma specialists and are very well respected in their field.

In general, one doesn't "pull the trigger" on initiating treatment based solely on one's involved immunoglobulin level and/or M-spike level. As JPC mentioned, treatment is usually initiated based on whether one is developing organ damage (that is, the "CRAB" criteria), or in some cases, the new MDE criteria (see: "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders").

Also, while there is generally no "cure" available for multiple myeloma, many myeloma patients successfully manage the disease as a chronic condition for a very long time and lead quite normal lives. In that regard, you can think of multiple myeloma as being more like diabetes, where one continually manages the disease over time. Also, while you mentioned the word "chemo", the treatments for multiple myeloma are not anything like the very debilitating chemo that may come to mind when you think of what other cancer patients may go through.

Lastly, the multiple myeloma treatments that have recently been introduced, plus those in the queue, have provided folks on this forum with a great deal of hope for being able to suc­cessfully manage this disease with even less side effects.

Hope this helps a bit. Let us know if you have any questions.

[mikeb]

Re: Please allow me to introduce myself ...

by mikeb on Mon Feb 01, 2016 12:12 pm

Hi Olivia,

Welcome to the forum. This is a great place to learn about MGUS, smoldering myeloma, and active multiple myeloma – collectively known as plasma cell disorders. Sorry that you have some numbers that are out of whack and are scaring you. All of us have gone through that, so we can sympathize.

You've gotten very good advice from JPC and Multibilly. I want to second what they said about seeing a myeloma specialist. That's the most important thing anyone can do after getting a plasma cell disorder diagnosis. And don't give up on going to Roswell Park until you talk with them about your insurance situation.

Finally, I want to add one thing. From the information you provided us, I don't think you would be classified as having smoldering myeloma. I think you need to have >=10% plasma cells found in a bone marrow biopsy in order to be smoldering, unless you have a high M-spike. You're well below 10% plasma cells. This table sum­marizes the differences between MGUS, smoldering myeloma, and active multiple myeloma. It's a few years old and does not account for the newly-defined "myeloma defining events" (MDE) that Multibilly mentioned, but it does help to make the distinction between MGUS and smoldering myeloma clear.

Best wishes to you. Please keep us posted on how things go.

Mike

[NStewart]

Re: Please allow me to introduce myself ...

by NStewart on Mon Feb 01, 2016 12:43 pm

Olivia -

One other thing to add to what the others have said is that the statistics that you read about survival are for the median life expectancy. That means that people live shorter than the life expectancy, they have very aggressive disease, and others live longer. When I was diagnosed in 2008 the life expectancy was 2 years. It's 8 year later and I'm still going strong with an active life and international travel. So, this isn't necessarily an immediate life sentence.

Also, when you read things online, about myeloma make sure that you are reading reputable websites.

Ask lots of questions because we are a very educated group of patients and caregivers in anything related to myeloma. We have all been in your shoes, have been scared, sick, etc, but we are still here.

You shouldn't have any problems with being able to be seen at Roswell Park with Medicare. But, you need to call them to be sure. The specialist who you see can work with a local oncologist to coordinate care when, and if, you need it so that you don't have to travel to the specialist frequently. If you don't feel comfortable with your current oncologist, then seek out one locally who you do feel comfortable with. I would also ask the oncologist if s/he is open to coordinating care for you with a myeloma specialist.

One last thing, you might want to look for a local support group for myeloma. You will meet many people who have been living with myeloma from newly diagnosed to veterans of myeloma of many years. You also will learn a lot from these people and have new friends to talk with about your concerns.

All the best,
Nancy in Phila

[Little Monkey]

Re: Please allow me to introduce myself ...

by Little Monkey on Mon Feb 01, 2016 2:38 pm

Here is the page at Roswell Park's website with information on the insurance the center accepts:

https://www.roswellpark.org/cancertalk/201510/which-medicare-advantage-plans-cover-treatment-roswell-park

Best of luck, I'm hoping your plan of Medicare covers you.

There is also Strong Memorial Hospital in Rochester, New York. I believe they have a haema­tol­ogist who specializes in multiple myeloma.

[JPC]

Re: Please allow me to introduce myself ...

by JPC on Mon Feb 01, 2016 3:51 pm

Hello again Olivia:

I am glad you found some of the input from us posters helpful.

Just a very general observation. It may be the case you are at the MGUS stage (to be con­firmed by your multiple myeloma specialist). If that guess is correct, then it is way too early to panic. There is no way that you can digest and learn all you need to in one or two days, but you will have some time. However, you will also need to be vigilant. When in the MGUS stage, it needs to be checked every 3 to 6 months. Sometimes the M-spike stays flat, then you are good, and can get by with six months checkups. If the M-spike is moving up, then you should check it more frequently. MGUS can advance, but several of the experts state that many people stay in MGUS or smoldering for many many years. It's sort of random. I hope you are one of the ones where the advance is very slow. Good luck to you.