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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Remission, what does it mean?

by Alan on Thu Jan 03, 2013 9:13 pm

At my monthly Zometa infusion, my file says I'm in remission.

Signals in my head want to say pain free, work again and full of energy, but I am the complete opposite.

What is remission for most people?

I can't stay awake some days and the bone pain in my ribs and spine is a 7 day a week. OxyContin and baclofen pile up next to the bed.

Remission?

What has multiple myeloma left behind when it was at max power last year?

The look on the nurses face was happy, I wanted her to see inside me and explain the mess I am.

Alan

Re: Remission, what does it mean?

by toridon on Sat Jan 12, 2013 11:24 pm

I heard the word" remission" this past week for the first time on my visit to my oncologist. He said I was in "serum remission" and explained that my m spike at 0.5 g/dL and immunoglobulins in the range of normal indicate remission. He said the bone destruction that already has occurred will hopefully be taken care of by the Zometa, meaning no further bone loss and perhaps even rebuild or repair some of the bone damage.

I must continue my chemo for another two months and then will be switched to a maintenance protocol. I am just grateful for the "remission" and live each day with the hope it wont rear it's ugly head again and do more damage.

toridon

Re: Remission, what does it mean?

by Dr. Peter Voorhees on Sun Jan 13, 2013 8:17 am

Remission simply means that there has been a decrease in the amount of myeloma as a result of your treatment.

In myeloma, there are many different kinds of remission. For those patients with a measurable "M spike," a partial remission means that the M spike has decreased anywhere from 50% to 90% of the level it was immediately prior to treatment.

A very good partial remission refers to a 90% or greater decrease in the M spike.

A complete remission means that the M spike is no longer detectable and there are less than 5% plasma cells on a repeat bone marrow biopsy.

A stringent complete remission meets all measures of a standard complete remission, but also includes a normal serum free light chain ratio and the plasma cells on the bone marrow biopsy must be polyclonal.

For those myeloma patients who have non-secretory disease (no M spike) and for those with light chain myeloma, similar definitions of partial remisison, very good partial remission and complete remission are in place.

To make it more complicated, there are emerging flow cytometry and PCR-based technologies that allow the detection of residual myeloma even in patients with complete remissions. You will increasingly hear about molecular complete remissions in the years to come, which refers to no detectable myeloma using these newer, more sensitive techniques.

Many patients have extensive bone damage at the time of initial myeloma diagnosis. In these cases, even if the disease is put into a complete remission, there often times will be persistent pain as a result of the damage already done. But by getting the disease under control and preventing further bone breakdown with Zometa (zoledronic acid), the existing damage should slowly heal and hopefully lead to better pain control in the not-too-distant future.

Best of luck!

Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Remission, what does it mean?

by Alan on Sun Jan 13, 2013 7:33 pm

Thanks for the replies.

There now seems some consistency in the messages I am getting about remission and its meaning. I had not received much feedback from my treating hospital here in Australia on what it meant and how myeloma works its wonders in the body,

I am on a Revlimid trial and the question marks have been based on what it is doing to me, and what myeloma has done to me.

Each day brings a new issue and I like to know what I am dealing with, this business of shrugging shoulders and a "perhaps, maybe, could be" is doing my head in.

At least your replies match the small amount of information I have received.

Thanks

Alan

Re: Remission, what does it mean?

by Stacy on Tue Oct 22, 2013 7:48 pm

I am reading this tread on what is remission. My husband was diagnosed with myeloma in August. His IgA was over 4,000, IgG was barely 200 and M-spike was 2.2 g/dL and his lambda free light chains was 1470, creatinine was 4.2, Beta 2 was over 6.

He is on his third cycle of Velcade + dex and these numbers are getting much better. Last tested IgA in September was 1760, creatinine is 1.14, M-spike was 0.9 g/dL.

I was really confused today after speaking with the oncologist. The blood work from last week in October did not include IgA, IgG, and IgM counts. When asking him why this was not included in the blood work this time around, he said those numbers didn't matter. It was the M-spike that they look at. Since he no longer has an m-spike he can be considered in remission.

EVERYTHING I have researched indicates that the IgA, IgG, IgM are very important numbers. So I'm confused. Is he really in remission with just no M-spike. His kappa and lambda are still not in normal range and I don't know the IgA, IgG, IgM since it was tested this month.

Stacy

Re: Remission, what does it mean?

by Deb63 on Tue Dec 03, 2013 11:53 pm

Remission is a confusing word for us too.

My husband was diagnosed early this year. Went through several cycles of Velcade, with Revlimid and dexamethasone. At the end of August we were told he was in complete cytogenic remission, and this is as good as it gets.

His oncologist stopped the Velcade, which was causing a decent amount of neuropathy, and put him on a maintenance dose of Revlimid.

While he feels much better than at diagnosis, he still is tired all the time and in enough pain to be on twice a day long release morphine. Everyone smiles and thinks he is fine because of remission, but that's not really the case at all.

Deb63

Re: Remission, what does it mean?

by Alan on Sun Dec 08, 2013 11:57 pm

I guess it's difficult to understand what remission is when the cancer is different for every individual . I read of marathon runners, mountain climbers, journal writers, and swimmers and I get a sense of guilt that I should be out there too. Spinal pain, diarrhoea and the daily issues prevent my re-entry into those worlds and it wouldn't be a good look if I tried them now.

Seems like remission takes many forms and according to what multiple myeloma has left behind in its wake, the patient has to fathom what form of remission they have.

I like reading of the adventures others have and the dancing at fund raising dinners but they may as we'll be talking about Mars.

Alan

Re: Remission, what does it mean?

by Dr. Peter Voorhees on Tue Dec 10, 2013 12:04 am

Dear Stacy,

The IgG, IgA, and IgM measures the total levels of these kinds of antibodies in the blood -- those that are made by the myeloma (in your husband's case, IgA lambda antibodies) and those made by normal plasma cells. The M spike is a measure of the amount of antibody made by the specifically by the myeloma.

Your husband's IgA at diagnosis was over 4000 mg/dL (4 g/dL) and the IgA lambda M spike was 2.2 g/dL. That means that of the 4 g/dL of IgA, 2.2 g/dL of that was myeloma IgA.

In September, the IgA was 1760 mg/dL (1.76 g/dL) and the M spike was 0.9 g/dL. So, at that time, of the 1.76 g/dL of IgA, 0.9 g/dL of that was derived from the myeloma. Since the M spike went from 2.2 to 0.9 g/dL, your husband was in a partial response (remission) in September.

The fact that the M spike was not detectable in October is great and could indicate complete response. Additional tests to include would be a serum immunofixation and serum free light chains, since the lambda level was high at initial diagnosis. The serum IgG, IgA and IgM are useful but the ones mentioned above are more critical.

Dear Deb63,

The fatigue and pain do not necessarily mean the myeloma has not responded to therapy and gone into some level of remission. The fatigue could be caused by side effects of medicine (Revlimid), and bone pain from myeloma can persist, even if the disease is put into a complete remission, due to persistent damage to bone.

Take care and good luck!

Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Remission, what does it mean?

by bluemountain on Tue Dec 17, 2013 6:16 pm

I am completely non-secretory in that it generates NO protein (always normal) and NO light chain (always normal), and it freaks me out what little information my doctors seem to use to make decisions on what is next. They found the myeloma as a result of many years of back pain and a decision by myself to try one more time to find out the cause of the pain and fix it before I got married.

My radiologist was the first to be concerned. He sent me to my primary care physician who said I did not have myeloma. Another radiologist said no way ... not myeloma. My first back surgeon even left me a long voice mail telling me I had a singular plasmacytoma but NOT myeloma. He actually said, this was the final diagnosis ... congratulations you do not have cancer!.

I made one trip to a local oncologist and he thought something was weird and did a bone marrow biopsy and found my percentage of bad cells to be a little less then 20%. And so it goes.

Next was radiation and they were able to successfully eliminate the plasmacytoma. Next was back surgery - the cytoma was on my spine. They removed two vertabrae and fused most of my back. Next was chemo (Revlimid, Velcade, dex). One doctor said it did not work well. My actual myeloma specialist said it did work.

I had my stem cell transplant (SCT) in February of this year. I never got sick or felt really bad, just tired. I was released from daily visits after 14 days and moved home. By then, my white count and platelets were normal. I went back to work part time 30 does after SCT and full time 60 days post transplant. I took my first vacation to South America 3 months after transplant.

I have never been sick, had a fever, cold. Anything really. My back pain is still bad, but improving, I work 60 hours a week, I travel weekends frequently and I feel great. Always have. I do have some issues with Revlimid, but nothing too bad.

Question is: When does the ... crap ... hit the fan? I have never felt bad throughout this process except when in the heart of treatment. If nobody can really monitor me, I am left with "how I feel" as the biggest indicator.

In September of this year I had my first PET scan since SCT and it was clean. I am on 10 mg Revlimid maintenance and last time at my specialist at Duke, I looked her in the eye and asked if I was in remission and she said "YES". How we determine that, or level of remission, I don't know. I do know Dr. G is acting as if I am in a pretty complete remission.

My next appointment is to have testing done for MRD [minimal residual disease] status in January, and if there is any, we discussed going after it.

Is that an indicator they think I am in a good remission, or just the next step?

I am 54 years old, have everything in place to fight this but still wake up every day wondering when it is going to go after me and, literally, when is it going to kill me. I guess one of my biggest issues has been communicating at times. The response almost always from my local oncologist and myeloma doctor is that I am doing great and don't worry.

I guess since I was diagnosed only 2 years ago that I have a lot to go through. It all seems so brutal and unpredictable.

My last question is - if my MRD status is zero or gets to zero, I hear a lot of talk about that being the door to cure. That seems to be the Black Swan Project goal when talking cure, so are we that close? Or is it all just wishful thinking.

My life is amazing. I want many more years with my wife, my friends and my family. Are we gonna get there?

bluemountain

Re: Remission, what does it mean?

by Alex on Tue Dec 17, 2013 6:33 pm

There has to be a name for this state of uncertainty we live in when diagnosed and going thru treatment.

It's one thing to face up to the tests and Revlimid, but I find the inability to work, plan, predict, or financially map out a future a separate "disease".

A person could fall into the trap of sitting idly by, waiting for the day when multiple myeloma does resurface and fail to engage in any form of activity. Pain and fatigue inhibit my ability and I try to get going, but this state of "no date" is a real killer.

There are those types who " warrior" on, talk of life as usual, or preach. Others must be in a similar state where the planned and coherent path of life is totally disrupted by this uncertainty that multiple myeloma brings.

I had a dream the other night that I opened a letter with my multiple myeloma return date written on a sheet of paper. I put it in on the fridge with all the invites and bills due. At least I knew.

Alex

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