[moonscape]

Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Sun Dec 27, 2015 9:56 pm

It's wonderful to find this forum, and comforting to think it will be here during my journey: to learn, connect, give and get support. This is all so new that that right now I don't understand most of your posts (various chemos, tests, etc), so will need a little time to catch up!

My story:

In September I started having a pain at my left knee that put me on a cane. Late October MRI showed tibia mass and masses in femur. I had diagnosed myself with knee tendon bursitis – oh how I wish!

November 9 I saw an osteo tumor surgeon at Stanford who admitted me and did surgery the next night. He removed the tumor that had broken out of my tibia, put in bone cement and titanium plates. Biopsy indicated plasmacytoma. I was very fortunate not to have crushed my leg.

Since then I've had bone marrow and bone biopsies, PET, whole body x-rays, plenty of blood work - and most everything comes back okay. My Stanford oncologist / hematologist says the bloodwork that's not good likely can be attributed to the plasmacytoma and surgery, and was talking of radiation of my left leg. But I'm having increasing pain in my right fibula (as my surgical left leg heals, my right becomes the worse one) which now keeps me on a walker or forearm crutch, and vague pain in my left wrist (I'm right-handed) and am not at all convinced I don't have another lesion (multiple myeloma.) Next week I am getting contrast MRIs of those. Have an appointment with my rheumatologist also, because if the pain in my right fibula isn't related, then I want to know what it is before I begin any sort of treatment for the plasmacytoma.

My CRAB looks good – calcium, renal function, slight anemia, but nothing alarming, with lesions being the question.

I've had 2 blood works for light chain - one 2 weeks after surgery, one 4 weeks after surgery: My kappa free light chain (range 0.3-2.0 mg/dl) went from 2.3 to 1.9, lambda free light chain (range 0.6-2.6 mg/dl) from 36.6 to 16.8 - and kappa / lambda ratio 0.1 for both.

IgA, serum = 442 (range 69-309)
WBC = in range
No active lesions indicate malignancy on PET (biggest deal was a kidney stone!)
Plasma cells <5%
M-spike = < 0.1 g/dl

All other blood work is good, bone marrow and bone biopsies (hip) good, PET scan did not indicate metastasis. But, I have this increasing fibula pain that began after the pain started from the plasmacytoma, and x-ray by surgeon before surgery showed activity that he said looked like classic lymphoma, so I am not trusting that I don't have multiple myeloma.

Do most multiple myeloma patients get lesions in their spine or ribs in the beginning? Those areas so far are completely clear for me. My major problems are my legs. Is this common or uncommon? The x-rays did show a couple spots on my skull, and some other lucencies in my limbs, but nothing else to support multiple myeloma.

Not sure what questions to ask but welcome any feedback. I have so much to learn, but feel so fortunate to be learning of this at an early stage. It would be wonderful to only need radiation on my leg, but if my right leg pain is from a lesion, I assume that would mean chemo?

Going into this, I thought: "I know I'll have many decisions to make. If only I could make them with the benefit of hindsight!" So I want to learn as much as I can to make the best choices possible.

Thanks for being here and reading this. I'm very grateful to have found you!

[Grizlump]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Grizlump on Mon Dec 28, 2015 12:12 pm

In response to Moonscape and the initial onset of this disease; I started out with severe pain in one of my upper ribs on the left side and it turned out to be a plasmacytoma. I had 25 radiation treatments and that seemed to clear things up for me without surgical intervention. This all started back in late 2010/ early 2011. After 3 years of monitoring my blood numbers and requiring no further treatment, the myeloma became active in the summer of 2014 when my M-spke shot up to over 3.5. I never knew I was sick until the doctor told me. I struggled through 3 rounds of Revlimid with Velcade and Dex which effectively destroyed my digestive track from one end to the other. Talk about the cure being worse than the ailment!!, except this was no cure. I got off the Revlimid right away and now I am getting a Velcade injection every 2 weeks as a maint. dose since the blood numbers have improved greatly. At 69 I have decided against the stem cell transplant and hope I can squeeze out a little more time feeling as good as I do now.

I have not experienced the crippling effects Moonscape mentioned and I believe it is because of early detection and the fact that the cancer first showed up in a rib. That was like being out in the country some where and other than the pain, it had no effect on my mobility. Hooray for percocet!!!!

Don't loose heart even though this can be a devastating disease. The odds are your symptoms can be lessened with proper treatment and you will be able to get on with your life if you are willing to make some compromises and seek good medical help.

I know this thing seldom ends well but for the immediate future, I am going to try to get what enjoyment I can out of the time I am still able to function and not worry about stacking up a pile of months or years. What the heck? I have already lived twice as long as Jesus did.

When first diagnosed and starting treatment, I sat around one evening and thought back over my life and all the things I had done that were hurtful to other people and of all the times I was not as kind to others as I should have been. After a long sleepless night I came to the conclusion that most of them had it coming and have since put all such thoughts out of my mind.

Good luck, Moonscape.

Charlie in Illinois (grouchy German)

[Little Monkey]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Little Monkey on Mon Dec 28, 2015 1:10 pm

Welcome to the forum Moonscape.

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Mon Dec 28, 2015 9:44 pm

Thanks Charlie. In fact, I've not lost heart at all. I can't say the last two months, in spite of the roller-coaster and everything that has happened, have been a bad experience. Obviously I wish I didn't have cancer, but I've met the most remarkable people, gotten extraordinary care, and am looking at life far more philosophically, and feeling its richness more acutely.

I also have macular degeneration, get regular eye injections, and can tell you that the thought of losing my functional vision has been a lot more terrifying than cancer (though admittedly, I'm a cancer newbie!)

I told a friend, I used to think the way I wanted to go out was to suddenly die in my sleep. Bam! One day I'm here, another not. But I don't think that anymore. I've had reflections as you did, but they were quite positive in the sense that it sharpened what is really important, and I felt so much BS falling away. Good stuff, really. Sometimes people show us the worst of themselves, but I have seen only the best of the human spirit the last 2 months, and am a better person because of it.

Very glad you're in a feeling-well period, and here's hoping it continues further than the brain can imagine! I'm with you, re quality vs quantity, and intend to do some serious life squeezing!

Moon

[NStewart]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by NStewart on Mon Dec 28, 2015 10:53 pm

Moonscape-
You'll learn that there really isn't a "normal" of anything with myeloma. A lot of people do have spine and rib damage when diagnosed, but not everyone. The way my myeloma was found to have progressed from smoldering to active was because my left arm broke where lesions had developed. Scans done at that time showed that lesions had developed throughout my body since they were done the year previously. When I relapsed after a 3 year response following a stem cell transplant, my left fibula was extremely painful. Scans done at that time showed a lesion in both of my fibulae, but the one on the left was symptomatic. I had 6 sessions of radiation for the left lesion. I also had restarted treatment by that time.

It's good that scans are going to be done for you again. It sounds like you might have something developing in your right leg. Hopefully you'll get on track soon and will respond well to whatever treatment is decided upon to address the problems that you're having so far.

All the best,
Nancy in Phila

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Tue Dec 29, 2015 1:16 am

Nancy, when you say you had 'also restarted treatment' at the time you had the right fibula radiated, do you mean chemo?

It's startling how quickly lesions develop, and certainly highlights the importance of constant monitoring.

Forgive the dumb questions, but this is all so new.

The first oncologist/hematologist said if there was a lesion in my right leg also, that they would not radiate both but start chemo. I got the impression it was one or the other.

My second oncologist/hematologist (both at Stanford, I had just requested a change) spoke of radiation, and wanted me to get on the schedule for end Jan/early Feb, saying if the contrast MRI indicated a different protocol we could cancel it. Well, I didn't hear from them, and sent a message asking, and got a response from the nurse coordinator that I could discuss it with my doc at my Jan 14 appointment. That is a month after my last appointment, which pushes radiation further out if it's indicated.

Being ignorant is a terrible thing. I don't know if this time gap (the plasmacytoma was surgically removed 11/10 - but I don't know if completely, what margins, etc), and if radiation ends up late Feb now, that seems a long time from point of tumor disturbance - potentially 3.5 to 4 months. Or am I concerned unnecessarily?

I'm seeing my tumor surgeon next week and will raise the issue with him as well.

[NStewart]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by NStewart on Tue Dec 29, 2015 2:02 pm

Moonscape,

Yes, I had restarted taking chemo after a 3 year break following my stem cell transplant. I had developed more bone lesions because I had relapsed. I've been taking Revlimid and dexamethasone for 3 years since this relapse and am doing well. If you are developing bone lesions, then starting treatment with one of the many induction regimens and bisphosphonate infusions are likely to be recommended. The bisphosphonates, Aredia and Zometa, are to strengthen you bones and protect them from the damage that the bone lesions cause. The radiation kills the myeloma cells in the bone lesion and helps to resolve the pain.

The time gap for starting the radiation depends on how big the lesion is and how likely you might end up with a fracture from the lesion. The lesions in my fibulae were found the beginning of December, 2012, and I began radiation the middle of January 2013. But, since I started my chemo again the beginning of December 2012, the myeloma already was being treated and I had responded quickly. So some of the pain from the lesion on the left was already beginning to diminish.

If you haven't done so already I would suggest that you find a myeloma specialist in your region. A myeloma specialist treats only, or mostly only, people with myeloma and does research into myeloma. They most often are located at university-affiliated research centers. If you have to travel some to go to one for a 2nd opinion, it is worth it. The specialists usually are willing to consult with and coordinate care with your local oncologist so that you don't have to travel to see the specialist as frequently as you do the local oncologist. I'm fortunate in that I live a mile from one of the major myeloma centers so don't have to travel to see a specialist and he is my only oncologist.

Keep asking your questions. We all started in your place at one time not knowing anything about myeloma. It's a steep learning curve, but it is doable.

Nancy in Phila

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Sat Jan 09, 2016 2:14 am

I've now had more MRIs (contrast and not), and had a follow-up appointment with my surgeon. He viewed the MRIs, as well as new x-rays of my forearm and right fibula where I was complaining of pain, and saw on my forearm a lesion that had doubled since early November, and two bone holes. He said that should confirm the multiple myeloma without putting me through a forearm biopsy (I hope so!). The bone and bone marrow biopsy at my hip had been negative.

Next week I have a new patient appointment with an oncologist/hematologist in my community, referred by my Stanford hematologist. I live just under an hour from Palo Alto, but this will make it more convenient for treatment. Also will see my hematologist at Stanford later in the week, and assume I'll finally learn what treatment is recommended. I am anxious to get started, and I don't like cancer having a party in my body without fighting back! My surgery was in early November, but then there were holidays and the big conference that I think created delays.

Nancy, about your recommendation to see a myeloma specialist at a teaching hospital: I am seeing a hematologist at Stanford who does also see lymphoma and leukemia patients, but has published in the multiple myeloma field and has a great interest in multiple myeloma. I am not certain how to evaluate this, or at what point it would be advisable to get another opinion at MD Anderson for example.

Right now, I feel I need to get started with some treatment, and guess my question is: how critical is the first step treatment? My numbers are mostly very good, and had I not complained about my fibula pain and wrist tenderness, it looked like I was dealing with only the plasmacytoma. So, I have only the bone lesions of CRAB, and it seems my spine and ribs are thankfully clear.

Is there a most common practice chemo for multiple myeloma that is caught early like mine? Or am I not even asking the right questions?

My learning curve is so steep! I feel like I'm running hard to catch up – will get there, but so wish this wasn't all so very foreign to me!

[Cheryl G]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Cheryl G on Sat Jan 09, 2016 12:30 pm

Hello Moonscape,

I'm sorry to hear that your diagnosis is most likely symptomatic multiple myeloma.

I must say, though, that it doesn't sound like a very simple diagnosis. You don't have the lab results typical of a symptomatic myeloma diagnosis; your M-spike is minimal and your free light chain levels are just slightly out of whack. You also apparently don't have clear signs of anemia, kidney damage, or elevated serum calcium levels (right?).

On top of that, you had a basically clear bone marrow biopsy, and nothing showed up on a PET scan.

BUT, you've got bone lesions. More than one. And those, combined with lots of little signs elsewhere, such as the fact that you DO have an M-spike, and you DO have free light chain levels that are not quite normal, suggests multiple myeloma is the correct diagnosis.

How hard do you think it would be to have your lab and imaging results reviewed by the myeloma specialists at UCSF, just up the road from Stanford? There is a good group of myeloma specialists at UCSF, and it might be worth having their eyes look over your test results to see if they agree that the symptomatic multiple myeloma diagnosis is correct.

I would suggest discussing such a second opinion with your Stanford doctor. He or she might actually be open to it, given that your diagnosis isn't necessarily straightforward.

If the diagnosis of symptomatic multiple myeloma is confirmed, you most likely will be started on the Revlimid, Velcade, and dexamethasone three-drug treatment regimen (RVD). It is increasingly a standard initial treatment for newly diagnosed myeloma in the U.S.

Another possibility would be Velcade, Cytoxan, and dexamethasone (CyBorD), but it is not quite as commonly used. See this poll that was done last summer here in the forum for a sense of how common different treatment regimens are:

https://myelomabeacon.org/forum/weekly-poll-initial-myeloma-therapy-usa-t5529.html

Good luck, and let us know if you have more questions. It's also worth getting familiar with the forum's search functionality (it's quirky), and you'll also want to know about this useful posting:

https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Sat Jan 09, 2016 6:21 pm

Cheryl, thanks so much for the links. I'm reading and trying to absorb ...

Thanks for the feedback on what you see in my case. It's puzzling that my tests are fundamentally quite good considering my multiple lesions and fibula bone pain. I'm not as puzzled that the bone marrow and bone biopsy came back negative, as I guess that can happen due to the mottled nature - but the other tests are more confusing. Ha - I say this as a total neophyte who basically doesn't know what the heck she's talking about!

Very good idea about a UCSF 2nd opinion. Do multiple myeloma specialists offer these without seeing the patient? For UCSF it doesn't matter as I'm close enough, but if yes, then would it be more advantageous to get one from MD Anderson or Dana Farber or ... ? I'm not knowledgeable enough about the best centers (or more so specific specialists) to ask for this. Would my Stanford oncologist be the best person to ask her judgement on who to ask for this, or better for me to know already who I want to get an opinion from?

My other question is: since the lesion in my forearm doubled in size from 11/12 to now - is that fairly common or does it indicate more aggressiveness? I do see lesions can appear and grow rather quickly, so am not alarmed by the doubling, just inquiring.

Many thanks.