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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Multiple myeloma in lymph nodes?

by Retired813 on Thu Nov 21, 2013 3:59 am

In late August I found a huge swollen node under my arm. Had a mammogram done and then had a biopsy done to make sure it wasn't breast cancer. Came back as a plasmacytoma tumor and a ct scan shows I have several more ... around 8 lymph nodes are affected. My oncologist started me on Velcade but said it would take quite awhile before it started helping so now I'm going through radiation. Its been 9 treatments so far and I'm not sure I can tell any difference in the huge one under my arm.

In 2010 I had radiation in my rt humerous bone, had an 8" long tumor there. The radiation caused the bone to be an empty shell and I eventually had that bone cut out and replaced with a rod.
My radiologist said in the 30 yrs he's been doing radiation treatments he's never had a patient with multiple myeloma in the lymph nodes and my oncologist pretty much said the same thing. I am trying to find info about multiple myeloma in lymph nodes but haven't found much. If anyone here has any links to info, I'd appreciate it very much.
God grant me the serenity to accept the things I cannot change.

Retired813
Name: Joyce
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2010
Age at diagnosis: 55

Re: Multiple myeloma in lymph nodes?

by indymike on Thu Nov 21, 2013 11:39 am

Hi Retired 813. I read your post with great interest. I recently had a PET and although the bones and marrow looked very good there were "hot spots" under both armpits where the lymph nodes are. The lymph nodes are apparently enlarged and showing hypermetabolic activity. They are not enlarged to the extent that I can feel them however.

My oncologist who is a myeloma specialist has ordered a biopsy of te area which will take place this Monday (Nov 25th)

When the results become available I will share the information.

indymike

Re: Multiple myeloma in lymph nodes?

by Dr. Jason Valent on Thu Nov 21, 2013 12:57 pm

It is certainly possible to have myeloma in the lymph nodes. But you may also want to have your pathology reviewed for a second opinion just to make sure that this is not a lymphoma that looks a bit like myeloma.
Dr. Jason Valent
Cleveland Clinic

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. Jason Valent
Name: Jason Valent, M.D.
Beacon Medical Advisor

Re: Multiple myeloma in lymph nodes?

by Wayne K on Thu Nov 21, 2013 1:19 pm

I'm no doctor, but my oncologist checks my lymph nodes at very visit.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70

Re: Multiple myeloma in lymph nodes?

by JimNY on Thu Nov 21, 2013 1:29 pm

Retired813 - If you have not had your case reviewed by a myeloma specialist at a major cancer center, I think you should ... for a couple of reasons.

First, as Dr. Valent suggested, what you've described is relatively unusual. Maybe it's myeloma in the lymph nodes. Maybe it's something else. This probably isn't something a standard local oncologist is typically going to be good at figuring out.

Second, if the myeloma is in the lymph nodes, then I think it is what would be called extramedullary myeloma, and that's usually a very aggressive form of myeloma. So it's not clear to me that Velcade is the only drug you should be being treated with.

I would think that, instead, you should be treated with a three drug combination like Velcade, Cytoxan, and dexamethasone or even Velcade, Revlimid, and dexamethasone.

Bottom line to me is that you should make an appointment with a myeloma specialist who can help you really figure out what is going on and, if necessary, adjust your treatment.

JimNY

Re: Multiple myeloma in lymph nodes?

by Retired813 on Thu Nov 21, 2013 8:33 pm

Thank you for all your replies. My oncologist is going to be putting me on chemo again. I tried Rev/dex and had horrible side effects and the zometa infusion caused me to have hypocalcemia. I ended up with a heart attack/heart failure and respiratory infection, spent 4 days in icu. All the dr's think it was due to the Revlimid. So that one is out. After my 3 wks of radiation I will be going back to my oncologist for chemo but she has to figure out what can be used on me due to the problems I had with the rev/dex.

Oh, I was already told I have the extremedullary (sp) multiple myeloma.
God grant me the serenity to accept the things I cannot change.

Retired813
Name: Joyce
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2010
Age at diagnosis: 55

Re: Multiple myeloma in lymph nodes?

by indymike on Wed Dec 04, 2013 3:34 pm

After three agonizing weeks waiting to hear if the activity the PET scan discovered involved myeloma or possibly even lymphoma I was relieved to be told it was inflammation. I also had a bone marrow biopsy while I was still out under the general anesthesia for the node bx. it confirmed the free light test that there is a relapse. I start Revlimid in the next few days. Not excited about it but very grateful it works so successfully on so many patients and that the biopsy didn't uncover extramedullary disease.

indymike

Re: Multiple myeloma in lymph nodes?

by mahshid_milani on Thu Apr 10, 2014 12:07 pm

Hi, I'm very sorry, Retired813, about everything you have gone through. My mother has been diagnosed with myeloma and refused to have chemo as we have done a lot of research about the drugs. They are poison and I hope you do some research about it.

We started my mum on MMS1 [Miracle Mineral Supplement] a month ago and her blood tests have all improved. She is also on 1000 mg vitamin B17 (amygdalin kills cancer cells), multivitamin liquid, fish oil, 5000 IU vitamin D, organic black seed oil (kills myeloma cells) and 100% organic diet. Our bodies recover much better when we take things from nature. A very interesting book called "A World Without Cancer" by Edward Griffin.

mahshid_milani

Re: Multiple myeloma in lymph nodes?

by Multibilly on Thu Apr 10, 2014 5:35 pm

Regarding:

"...We started my mum on MMS1 [Miracle Mineral Supplement] a month ago and her blood tests have all improved. She is also on 1000 mg vitamin B17 (amygdalin kills cancer cells), multivitamin liquid, fish oil, 5000 IU vitamin D, organic black seed oil (kills myeloma cells) and 100% organic diet...."

When you say her "blood tests improved", just how much did her M-Spike, affected immunogloblulin and free light levels actually improve from the previous test to the most recent test?

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


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