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Is my mother's multiple myeloma active again?

by KMZ on Sun Nov 29, 2015 9:09 pm

Hello everyone,

I am new to this forum. Please be patient reading my mother's story!

My mother (78 years old) has multiple myeloma since 2013 and had some initial treatment earlier.

She also had a pathological fracture in her left femur that required from her 3 surgeries to have it fixed. She has done an initial one; immediately after the fracture that was as an emergency case. That's why the nail fixation failed after 2 months. In October 2013, another surgery was done in Singapore with more proper nail fixation.

After surgery, her pain has reduced. They were expecting 3-6 months for the fracture to heal; which never happened due to lots of other factors: age, diabetics, multiple myeloma, etc.

Towards end of 2013, her multiple myeloma was in complete remission. We were told from the beginning that she is not a candidate for transplant due to lots of elements and mainly age.

She was put on a maintenance dose of Velcade 1.3 mg/m2 fortnightly + dexamethasone for almost a year (until February 2015). Despite the low dose she was given, she was able to achieve CR.

She became immobile, although she was very active before the fracture. Doctors after second surgery requested her not to walk or put any weight on it. Her mobility deteriorated, and she started getting pains in her legs and feet. We were told that is a side effect of the Velcade.

We decided to take her again to Singapore in April 2015 for another revision surgery; hip joint replacement which was the last resort.

The procedure went OK. However, she suffered a lot of post surgery problems. She was well managed but it took her around a month in the hospital till she was discharged. Just few days after returning back to the apartment in Singapore after discharge and before going back home (luckily) she made a wrong movement while trying to sit on the WC which caused the hip artificial ball to get dislocated!!

She was admitted again to hospital ... doctor managed to return the hip into its location externally without the need of going into another surgery. She stayed there around 2 weeks before getting discharged. She was in a very bad psychological state; so we did. Fortunately, they got her myeloma checked once again before leaving Singapore and her results were excellent:

FBC was normal, Hb was 11.8 g/dL

There was no monoclonal band detected and the immunoglobulin levels were normal (only IgM was below normal levels) . Her liver and renal functions were normal.

Her oncologist confirmed that she does not require any treatment at that time (although I have asked if a maintenance is required; he said no, only monitoring).

3 weeks ago, she has done the required routine tests. The results were as followed:

Unfortunately, as you can see, M-protein is 15.9 g/L (1.59 g/dL).

We did free light chain test. Results showed that both kappa and lambda are high. Hence, ratio is within the normal range. Doctor didn't comment much on that; although I have read some­where in this forum that when both are high then it is not an indication for multiple myeloma!

Finally, doctor has performed a bone marrow test last week for her. She will see him this week to discuss the results.

Please give me your advice on the total situation, and about the recent results. Is there any indication from those results that myeloma could be active again?

Thank you.

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KMZ
Who do you know with myeloma?: Mother
When were you/they diagnosed?: June 2013
Age at diagnosis: 76

Re: Is my mother's multiple myeloma active again?

by MMFeb16,15 on Mon Nov 30, 2015 9:13 am

Please consult your hematologist. I am not a physician, but based on what I am going through and your mother's blood test report, it is clear to me that your mom has multiple myeloma.

When I was declared to have active multiple myeloma, my M spike was 3.9 g/dl (39 g/L). After five cycles of Revlimid plus dex, it came down to 1.5 g/dl. Your Mom has 1.59 g/dl. Your mom also shows monoclonal in immunofixation electrophoresis.

I wish your Mom the best.

MMFeb16,15
Who do you know with myeloma?: Self
When were you/they diagnosed?: February 16, 2015
Age at diagnosis: 66

Re: Is my mother's multiple myeloma active again?

by Multibilly on Mon Nov 30, 2015 9:20 am

HI KMZ,

Well, it would appear that her multiple myeloma is active again, given the recent M-spike of 1.59 g/dL. But her doctors really need to make this determination and should have the final say on interpreting any lab results.

The interpretation of a high kappa + high lambda + normal k/l ratio that shows up at the end of the lab report is a pretty standard interpretation of these specific kinds of FLC results. So, it would probably make sense to do further follow up on whether she has a polyclonal increase in her immunoglobulins that could be due to an autoimmune disease or infection. Renal (kidney) impairment is also another possible explanation and should be checked.

Regarding renal impairment, did they also measure her serum creatinine level? Was a number also provided for her eGFR (estimated glomerular filtration rate)? These numbers may provide additional clues as to whether she is suffering from any sort of renal impairment. But the fact that she has an elevated urea level and an elevated potassium level may also suggest some sort of renal impairment that deserves additional follow up.

Again, I'm not a doc, so please follow up with yours.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Is my mother's multiple myeloma active again?

by KMZ on Mon Nov 30, 2015 11:05 am

Dears Multibilly and Feb16,15,

Thank you so much for your prompt responses and explanations.

Last work on this will be based on the bone marrow results coming on Wednesday. I was trying to gather information in order to expect what is coming.

I am a bit worried now for her kidneys. Not sure if that's one side effect of the amount of painkillers she taken in the last two years.

If it was confirmed that myeloma is active again, what is the approach? Does she repeat treatment with Velcade? Or something else has to be tried out, as some people say repeating same medication doesn't work?

In cases similar to my mom, if transplant is not an option, what usually happens? Does the patient continue on chemo for life?

KMZ
Who do you know with myeloma?: Mother
When were you/they diagnosed?: June 2013
Age at diagnosis: 76

Re: Is my mother's multiple myeloma active again?

by BeatMyeloma on Mon Nov 30, 2015 2:52 pm

Hi KMZ,

You're asking the million dollar question! :) Your doctor (is your mother seeing a myeloma specialist?) is going to have the best idea of what to do. He/she may have her do a regimen that contains Velcade, perhaps tweaked with a different drug added in. Or they might go in a different direction entirely! Myeloma is a heterogenous disease, so I'm sure they will be looking closely at things like chromosomal abnormalities, past responses, etc.

Your doctor also might want to consider clinical trials, which could be a great option and a chance to get the latest drugs before they are FDA approved.

Are you going to the doctor with your mother? Remember to ask them if there are any trials that she might be a good candidate for.

Keep us posted!

BeatMyeloma
Name: BeatMyeloma
Who do you know with myeloma?: My mother
When were you/they diagnosed?: Jan. 2008
Age at diagnosis: 54

Re: Is my mother's multiple myeloma active again?

by KMZ on Mon Nov 30, 2015 4:28 pm

Dear BeatMyeloma,

Thank you so much for your help and response. I can see that you too are going through some hard time with your mother. It's really a hard feeling when you see them deteriorating without being able to do much.

My mom's doctor here is normal hematologist. I am in touch also with her doctor in Singapore, who has given her the initial therapy. I always refer to him for a second opinion. With the current situation, he has requested the bone marrow biopsy and PET scan. The doctor here said, let's start with the bone marrow biopsy and see the results. If we just do the PET scan, and found out that there are some lesions, what would we do? I couldn't see anything. I told him you are the doctor!!

My mom's response to Velcade + dex was very quick. I am not sure if it is gonna be the same this time.

Unfortunately, we live in a part of the world where it is very difficult (if not impossible) to be part of these trials.

Let's wait and see what happens on Wednesday. I will keep you updated.

God bless us all, our mothers, beloved ones.

Regards,

KMZ
Who do you know with myeloma?: Mother
When were you/they diagnosed?: June 2013
Age at diagnosis: 76

Re: Is my mother's multiple myeloma active again?

by KMZ on Wed Dec 02, 2015 11:03 am

Greetings,

Today was my mother's appointment with the oncologist to get the results of the bone marrow biopsy done two weeks ago.

For those who haven't read my previous post, my mother has myeloma since 2013. She got some treatment for a year then stopped. she has been under monitoring since then.

Latest blood work done showed M-spike of 15.9 g/L (1.59 g/dL). However, kappa and lambda free light chain were both high at: 33.3 and 40.8 mg/l respectively. Hence kappa / lambda ratio is normal 0.816. Doctor said that we need to perform a bone marrow to understand if myeloma is really active or not.

Results came today for the bone marrow. The report says:

Bone marrow aspirate is particulated with hypocellular to cellular trials and particles. Mega­karyo­cytes are present

Erythropoiesis is active.

Myelopoiesis is active with maturation.

Around 4% plasma cells are noted

According to the doctor that is considered as a good result indicating remission. However, she cannot justify the M-spike in the blood test. Hence, she would do further tests and do some more.

Is that result really good? Has anyone been in this situation (M-spike and bone marrow is OK)?

Let me know.

Thank you.

KMZ
Who do you know with myeloma?: Mother
When were you/they diagnosed?: June 2013
Age at diagnosis: 76

Re: Is my mother's multiple myeloma active again?

by Ellen Harris on Wed Dec 02, 2015 11:26 am

Although this appears to be good result, bone marrow biopsies are dependent upon the sample taken, and myeloma is notoriously "patchy," so if the doctor hits a spot with no or few myeloma cells, the results can indicate no or low level disease. If taken from a different spot, there can be more myeloma cells, and thus a different result can be obtained. However, it is never bad to have a good biopsy result.

If your Mom has an M-spike, however, more testing should be done. Although her M-spike is not high, I would think a PET/Ct would be indicated.

Good luck, and please follow up with us and let us know what happens.

Ellen Harris

Re: Is my mother's multiple myeloma active again?

by KMZ on Sun Dec 13, 2015 7:20 am

The below reply came from my mother's oncologist abroad:
Yes, there is definite myeloma activity. But doesn't seem bad. She will need to change her treatment. It is not "urgent"" and we can take some time to discuss through properly. There are some new medications available which may be more suitable for her‎. However, these are still in clinical trials at moment.

Any chance of coming over for a more detailed discussion?

And here is our reply to him:
Thank you so much doctor. It may be very difficult to travel to Singapore at this time, nevertheless will discuss with the family and will get back to you. Just to give us an idea, how soon do you think we should resume treatment? Her doctor here is looking at going back to Velcade by first week in Jan 2016, subject to further blood tests he plan to do prior to that.
Please share your views with us. We have our utmost faith in God then in you.

Travelling back to him in Singapore is extremely difficult. It's about 12 hours flight from our country including transit, while she is a wheelchair bond.

Can anyone suggest anything based on the current situation? My mother and the family are getting worried!

KMZ
Who do you know with myeloma?: Mother
When were you/they diagnosed?: June 2013
Age at diagnosis: 76

Re: Is my mother's multiple myeloma active again?

by Little Monkey on Sun Dec 13, 2015 10:27 am

KMZ, what country are you in?

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

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