[k8_298]

Smoldering multiple myeloma with possible amyloidosis

by k8_298 on Wed Aug 26, 2015 4:44 pm

Hi,

I am hoping to hear about someone else’s experience with smoldering multiple myeloma and amyloidosis.

My Dad was diagnosed with smoldering multiple myeloma 22 years ago, He is now turning 70 and I am concerned he may be presenting with signs of amyloidosis. He visits a hematologist annually every November to check his multiple myeloma levels and he has told me that there has been no change over the course of the 22 years.

I started to notice small amounts of bruising around his eyes over a year ago and it has become more frequent in the past few months. The bruising comes and goes and at the moment he has what looks like a stye on his bottom eye lid. I have only just recently started to investigate why he may have the bruising and I came across amyloidosis.

He suffered a heart attack at the beginning of the year and was told that he was very lucky that his heart didn’t sustain too much damage to the heart during the attack. The cardiac specialists in the hospital did know about the multiple myeloma diagnosis, but nothing was discussed with my Dad about amyloidosis. I am wondering if the heart disease and multiple myeloma could be related.

Dad also suffers with terrible lower back pain which he describes the pain like pulling a muscle in his back. The pain can last for days at a time then will dissipate. He has never had any fractures of the back or any other bones. We have a GP appointment which he has asked me to attend next week to discuss the bruising around his eyes.

I would love to hear from anyone who has multiple myeloma and has any characteristics of amyloidosis such as bruising around the eyes. If so, I would like to know if it is possible to have localized primary amyloidosis with smoldering multiple myeloma.

Thanks in advance

[Multibilly]

Re: Smoldering multiple myeloma with possible amyloidosis

by Multibilly on Wed Aug 26, 2015 6:06 pm

k8,

I don't have amyloidosis and I'm not a doc, but as I understand it, amyloidosis can occur with any stage of multiple myeloma or in the absence of myeloma. I'm sure others on this forum with amyloidosis will jump in.

You can only diagnose amyloidosis through a tissue biopsy (abdominal fat pad, kidney, etc). It doesn't seem like a big ask to request an amyloidosis biopsy given the eye bruising, cardiac issues, and back pain and the fact that amyloidosis can sometimes develop alongside a diag­nosis of any stage of multiple myeloma.

While amyloidosis can cause back pain, has the doc ruled out that the smoldering multiple mye­loma is not the cause? Specifically, has he had a PET/CT or an MRI of his lower back done to confirm that there are no lytic lesions that may have occurred as a result of his smoldering mye­loma? (These imaging tests should be done periodically anyway with any smoldering myeloma patient.) Is his calcium level normal (this may rise if there is bone damage associated with multiple myeloma)?

Lastly, is he under the care of a myeloma specialist (not just an onc who sees some myeloma patients)? Seeing a myeloma specialist makes all the difference in the world. Multiple myeloma specialists are also on top of amyloidosis and should be able to quickly make a determination if amyloidosis is in play.

[eclipsefarm]

Re: Smoldering multiple myeloma with possible amyloidosis

by eclipsefarm on Wed Aug 26, 2015 6:08 pm

Hi,

I was diagnosed with multiple myeloma and amyloidosis in 2010. My primary symptoms were amyloid symptoms – bruising around the eyes and yellow skin coloration on some areas of my body. I'm wondering if his back pain could be related to multiple myeloma?

I wish both of you the best.

D

[k8_298]

Re: Smoldering multiple myeloma with possible amyloidosis

by k8_298 on Thu Aug 27, 2015 10:48 pm

Thanks so much for your response Multibilly and eclipsefarm. My Dad sees a hematologist once a year and has told me that because the multiple myeloma is smoldering, he does not see an oncologist. The unfortunate thing is that my Dad doesn’t like to talk about his condition, hence why I’m trying to get some information through this website. He is allowing me to go to the GP with him this week, so this is a big step for him, and I am now hoping that he will allow me to be more involved now that he is showing a few other symptoms.

Multibilly, thanks so much for the information about getting an MRI on his back. I will suggest this to my Dad and the GP.

Eclipsefarm, how old were you when you got your diagnosis and did you have any other organ involvement when you had the bruising in the eye area? I’ve also noticed that my Dad will occasionally have a dark red/black spot on his lip along with strange lumpy looking nodules on the bottom inside of his mouth in the corner of his lips. Both the bruising in the eye area and spot on the lip come and go and I am wondering if the spot could also be another amyloidosis.

Thank you both again for your responses, I really appreciate it.

[NotADoc]

Re: Smoldering multiple myeloma with possible amyloidosis

by NotADoc on Sat Aug 29, 2015 8:29 am

As my moniker explains, I am not a doctor, but I have had smoldering myeloma for 5 years. The difference between me and your father is that my IgG levels were declining, so I had blood tests every 4-6 months to check it out. Earlier this year, I had swollen feet (edema) and it was clear that there was something going on with my kidneys so I went to specialist and the subject of amyloidosis came up. We checked and it was positive.

I am now undergoing the whole routine and so far my reaction has been positive and en­cour­ag­ing since we caught it very early.

I regret to tell you that I believe that your NONDOC diagnosis seems spot on. From every symp­tom you describe, it seems clear to me from the literature I have read that your dad does indeed have amyloidosis. I won’t go into detail, but the back pain, the eyes etc. all point to this disease. My strong suggestion is to run to the nearest specialist lab to get the specialized amyloidosis testing that can only be done in a few places. This involves staining with Congo Red and special microscopes that I won’t go into here. It is a very specialized test.

There is no indication of your location, but Mayo Clinic does most of the amyloidosis testing in the U.S., even for NYU Cancer Center, otherwise the Royal Free Hospital for about $6,000, does a full day treatment with a SAP Scan which can show the exact location of the disease in the body. They were quite efficient and it is the specialized center for Europe for that disease.

You need to know that all the literature indicates that one’s survival rate having this disease is highly dependent on the extent of the cardiac involvement of the amyloids. If your dad already had an attack he is most likely in the later stages and there may not be much that can be done other than an immediate stem cell transplant..

I AM NOT A DOCTOR and this is not medical advice – I have studied this subject in detail for the last few months, for obvious reasons, and have read many of the papers on it. You need to get your dad to stop his denial and go ASAP to a specialist clinic that can do the unique amy­loidosis testing so he knows his situation.

You are a wonderful daughter and he is very lucky for that. Use your influence on this.

[MnM]

Re: Smoldering multiple myeloma with possible amyloidosis

by MnM on Sat Aug 29, 2015 12:41 pm

I also have the distinguish label of smoldering myeloma, since 2003, with an additional notoriety of "high risk" in 2013. I watched my M-spike creep up over the years. I was enrolled in a study to start treatment for smoldering myeloma but, for a reason unknown my M-spike took a nose dive which I then was ineligible for the study.

My cardiologist is the one who is very concerned with me developing amyloidosis. Every year he performs a sonogram test to determine if my heart has enlarged. Since I also have the bruising around the eyes and an enlarge tongue, I guessed this and some heart issues raised a red flag. He is satisfied with these test but, strongly encourages continuing diligence on having the multiple myeloma checked constantly. Which I'm still unsure what the "checking" or "testing" should be done. I get so confused with some of the varying recommendations given on this site.

I could be wrong but, it was my understanding the red stain performed on a bone marrow sample sometimes gave false negatives.

Unfortunately, my oncologist left the area to become a member in a research hospital in a different state about a year and a half ago. I was devastated since I had a terrible time with a previous oncologist and I thought this doctor and his team were fantastic. His patient care, repoire and knowledge in multiple myeloma was what I needed. I do have my numbers checked every 6 months (blood and urine) but, I know that I need to find a new multiple myeloma specialist. I have tried but, I'm not able to get an appointment since the scheduler says I must have a BMP and a CT scan result within the last 6 months. Mine are 3 years old. I think I'm also afraid of the day I'm told that my case has become active. I can go out of state; follow my previous doctor...

Sorry, I have gone off track. I believe the cardiologist can do some baseline test to determine the size of the heart then follow up with yearly testing.
Best,
Mary

[Multibilly]

Re: Smoldering multiple myeloma with possible amyloidosis

by Multibilly on Sat Aug 29, 2015 5:54 pm

Mary,

I have always read that the electron microscopic inspection of a Congo-red stained tissue sample is stil the "gold standard" for diagnosing amyloidosis. The biopsy sample can come from an abdominal fat pad biopsy or other tissues and doesn't require a bone marrow aspirate for the test (which greatly simplifies and reduces the cost of getting a sample). This is also stated in the article below, but you can also just google on "amyloidosis gold standard".

http://www.bloodjournal.org/content/120/16/3206?sso-checked=true

"...The gold standard for diagnosis of amyloid is the Congo red stain. All forms of amyloid exhibit affinity for Congo red and give off an apple-green birefringence under polarized light. It is one of the characteristics that distinguish amyloid from other fibrils".

This article talks about the potential drawbacks to the congo-red stain biopsy approach and why electron microscopic inspection should be used in the tissue analysis. It also includes a video on what's involved in the procedure.

http://www.jove.com/video/1747/performing-and-processing-fna-of-anterior-fat-pad-for-amyloid

"....The most frequently utilized method for amyloid identification in tissue remains the characteristic apple-green birefringence pattern seen when Congo red stained sections are visualized under a polarized light microscope. When fat pad aspiration is performed, Congo red stains can be done on either direct smeared slides or cell block preparations of the aspirated adipose tissue. However, patients in early stages of amyloidosis have scant amyloid deposits, which greatly reduces the sensitivity of Congo red stained cell block sections. Ultrastructural evaluation of fat pad aspirates by electron microscopy has better reproducibility and improved sensitivity. Therefore, it is recommended to submit all fat pad aspirates for both preparation of a cell block and for performing electron microscopy."

"

[jlb]

Re: Smoldering multiple myeloma with possible amyloidosis

by jlb on Sat Aug 29, 2015 10:31 pm

I have amyloidosis and multiple myeloma. Ask for the test so you know. For me Velcade and dex beat them both back but not before it got my kidneys and my heart. Still on Velcade and kidneys are better and heart damage isn't terrible so I am lucky. But the longer it goes the more trouble you're in.

[Tracy J]

Re: Smoldering multiple myeloma with possible amyloidosis

by Tracy J on Sun Aug 30, 2015 12:56 pm

I have both AL amyloidosis and multiple myeloma. Otherwise unexplained bruising around the eyes is VERY indicative of amyloidosis, which can also attack the heart, kidneys, gut, and lungs. The damage to these organs by deposition of amyloid fibrils is relentless, progressive, and not always reversible, so it is important to diagnose it as early as possible.

The way to diagnose it is indeed with a biopsy sample, that must be subjected to Congo red stain. What do you biopsy? There are many choices, and it depends on what organ is being affected. If the symptoms are mostly kidney symptoms, then you'd get a kidney biopsy. If the symptoms are mostly heart, then you'd get a heart biopsy (yes, that's a thing). Otherwise, bone marrow biopsy usually shows amyloid fibrils if they are there, but not always. Abdominal fat biopsy usually shows amyloid fibrils if they are there, but not always (about 80% of the time). So you can see that when it comes right down to it, diagnosing AL amyloidosis is not straightforward, and not easy.

This sort of stuff is way beyond the expertise of your average primary physician. It is even beyond most hematologists/ oncologists. As important as it is to get a myeloma specialist, it's even MORE important to get an amyloidosis specialist.

Boston Medical Center and Mayo clinics in Rochester, MN are the two places I hear about the most with regard to amyloidosis. I went to Boston Medical Center for my treatment (autologous stem cell transplant) and they were superb. They are like a big family there, and they actually cooperate with each other. When I call the clinic with a question or scheduling conflict, Natasha answers the phone, and she always remembers me. She also recognizes me by sight. When I walk in for my appointment, she says, "Hi Tracy!" Same with the doctors that have seen me.

The doctors there are from all specialties that might have a role in caring for a patient with amyloidosis - so they have hematologists, blood bank doctors, cardiologists, pulmonologists, nephrologists, gastroenterologists, and others - all right there in the clinic, and all focused on amyloidosis. It really is world class.

Good luck. I know it must feel like you are in the weeds now, but there is help out there.

[Rshapo7]

Re: Smoldering multiple myeloma with possible amyloidosis

by Rshapo7 on Mon Aug 31, 2015 3:07 am

First check if there were any previous biopsies, including any from colonoscopies. Stomach fat is 75% predictive! Bone marrow 50%. Check blood for free light chains.