[Cheryl G]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Cheryl G on Mon Jan 11, 2016 7:08 pm

Hi Moonscape,

To me, the key issue in your case right now is what the right diagnosis is. The lesions, and the fact that they seem to be growing, definitely suggest a multiple myeloma diagnosis. But there are enough things that are just slightly "off" that I think it would be good to have a myeloma specialist look over your test and imaging results.

But I'm not a doctor, and maybe the diagnosis is basically clear to someone who is.

So what I would suggest is that you meet with your Stanford doctor again and ask her to explain to you how certain she is about your diagnosis. You can say that some things seem a bit odd to you, and that's making you wonder if perhaps having another pair of eyes look at your file might be helpful.

Maybe the Stanford doctor is convinced that the diagnosis is correct, and maybe she'll be able to convince you. In that case, getting a second opinion isn't that important right now.

Another possibility is that the Stanford doctor also is not 100 percent convinced of the diagnosis. In that case, she might even help arrange to have a myeloma specialist elsewhere (UCSF or elsewise) look at your results, with or without an in-person consultation.

I guess what I'm saying is that, at this stage, I'd try working with your current doctor, rather than around or against her.

Now, if it is going to take a long time to get a meeting with the Stanford doctor to discuss these things, then go ahead and make an appointment with a myeloma specialist at UCSF (Dr. Wolf or Dr. Martin are the senior myeloma specialists there, and you probably want their experience in your case), and arrange to have your file sent to them.

Finally, if you haven't already come across it, this article outlines the criteria doctors use to diagnose someone with multiple myeloma.

https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/

It probably would be a good idea to have read the article before any future doctor's appointment to discuss your diagnosis:

Good luck!

[Multibilly]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Multibilly on Mon Jan 11, 2016 8:01 pm

I agree with Cheryl's recommendations. In addition to things be "sligthly off" wrt to a multiple myeloma diagnosis and your test results, lesions in the forearm due to multiple myeloma are relatively rare. See:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868823/

"...Forearm lesions and pathological fractures are relatively rare in multiple myeloma. The commonest sited of fracture are the spine (55%-70% of patients) especially in the lower thoracic or lumbar vertebral bodies. Other common sites of fracture include the femur, pelvis, ribs, and humerus. Fractures result from direct myelomatous involvement of the bone and also can result from the generalized bone loss that is a hallmark of myeloma"

The docs that Cheryl recommended are top notch multiple myeloma specialists.

[Cheryl G]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Cheryl G on Mon Jan 11, 2016 9:14 pm

Multibilly makes an important point about the lesions in your forearm. I hadn't really given the location of the lesions much thought. The forearm isn't the typical place you hear about people having lesions or fractures at diagnosis. It does happen, but you hear a lot more about lesions elsewhere.

You did mention, though, that a (potential?) lesion also was found in your fibula. That's worth keeping in mind.

You want to make sure your diagnosis is correct. With a slight M-spike and elevated lambda free light chains, there are indications that you have some sort of monoclonal gammopathy. But it could be just MGUS or smoldering multiple myeloma, which do not require treatment. If the lesions are due to the monoclonal gammopathy, then they would indicate you have symptomatic multiple myeloma, requiring treatment. The key, though, is that the lesions have to be due to the monoclonal gammopathy. The mere presence of lesions is not enough for a symptomatic multiple myeloma diagnosis.

Good luck!

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Mon Jan 11, 2016 11:11 pm

Thanks to you both for your input.

I meet with my Stanford hematologist Thursday and will raise all these issues. From the limited (but cramming!) reading I've done, I see how my case is not common.

The problem with my right fibula is that it's becoming a disabling pain. It began a few weeks after I got the first pain just below my left knee, where the plasmacytoma had broken out from my tibia. I was favoring it, and then started getting twinges in my right fibula. It began as tenderness when I crossed my legs in bed, then progressed to where I needed a cane for that leg also. I can lumber minimally in the house without a cane, but use two forearm crutches for anything beyond that.

x-ray result from last week said:

"Lytic lesion with cortical disruption noted in the proximal right fibula. There are also vague lucencies in the proximal tibia. These lesions are better appreciated on MRI of the right foreleg dated January 5, 2016. Findings are consistent with malignancy."

and the MRI report says (among other things):

1. Innumerable enhancing lesions within the proximal right tibia, proximal to distal fibula, bilateral distal femora, and distal left tibia, compatible with multiple myeloma versus extensive metastatic disease.

2. One of the dominant lesions in the proximal fibula exhibits aggressive features with an extracortical exophytic component and is at risk for pathologic fracture.

[Cheryl G]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Cheryl G on Tue Jan 12, 2016 8:35 pm

Hello again Moonscape,

I went back and re-read your earlier posts and also your latest update. From those postings, particularly the imaging results you've shared, it's clear that something is going on in your arm and leg bones.

It's also clear that the radiologists think that myeloma is the most likely cause of what's going on.

Still, I think it's worth having an earnest discussion with your Stanford doctor as to how certain she is that a multiple myeloma diagnosis is justified, and whether a second opinion might be helpful. I think that, regardless of what is decided during the discussion, it will be useful for both of you.

Please update us on how things go with the appointment, and let us know if you have further questions.

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Sat Jan 16, 2016 12:00 am

Had a productive, informative meeting with my Stanford hematologist. I definitely have multiple myeloma, which I was expecting. Had read the diagnostic criteria, and it seems my plasma­cytoma and lesions met them. I did ask my doc if she has other cases that present like mine, and she said yes - that while it's not common, it's also not unique. She said she sees the less common cases also since she has so many multiple myeloma patients.

I'll be starting treatment with Revlimid, Velcade, and dexamethasone (RVD) next week, administered by my local hematologist.

I had a lot of questions about side effects (am diabetic, and have fibromyalgia), how my re­sponse would be measured (M-spike and light chain) given my good numbers, her thoughts on stem cell transplantation, maintenance ... and what I liked so much was that in every answer she gave, quality of life was definitely incorporated. That is probably true with most on­col­ogists, but I particularly liked her approach and philosophy. Will start on standard dose RVD, then adjust based on side effects, response, etc Thankfully, I record appointments and can go back and listen to the specifics again.

I left feeling very confident and grateful to be under her care. She's an excellent com­muni­cator, listens well, and is very caring.

I've done pretty well through the tumult of the last months (diagnosis <3 months ago, and have had a whirlwind of surgery, skilled nursing, holidays, tests upon tests, vertigo!) but now that it's time for treatment to start, I'm suddenly more apprehensive. So often fear of the unknown (will side effects be dreadful, will my emotional state betray me, how will I cope with this new life, etc) is worse than dealing with the reality. Will trust (and hope) that will be true as I move forward.

Am going to a Northern California Blood Cancer Conference next weekend in San Francisco, and am looking forward to hearing Dr. Jeff Wolf in the multiple myeloma breakout session. Ah, just realized I better ask for my chemo to start the following week to be safe!

Thanks very much for all the input and benefit of your impressions and experience. This is a wonderful group. I know I'll have many more questions going forward, and hope once I learn more I'll be able to contribute more.

[Cheryl G]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by Cheryl G on Sat Jan 16, 2016 7:32 am

Thank you for the update, Moonscape.

I was so hoping that your news would be different. I am sorry that it wasn't. I am glad, though, that you are comfortable with your oncologist. She does seem to be providing you with the sort of information and feedback you need, and her treatment recommendation is in line with what most U.S. physicians (and myeloma specialists) would probably recommend for you these days.

Do let us know any questions you have going forward. Although I am sad that you have joined this exclusive club, I feel that you will be a valuable member.

[JimNY]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by JimNY on Sun Jan 17, 2016 9:57 am

Welcome to the forum, Moonscape. I also am sorry to hear about your diagnosis, but I appreciate how you've described your experience so far and the steps that led to your diagnosis. I hope your treatment goes well, with a great response and only limited side effects.

[NStewart]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by NStewart on Mon Jan 18, 2016 3:43 pm

I'm glad that you've now got a definite diagnosis of myeloma, not that it's fun to get, but at least you know. It's also good that you have an oncologist who you respect, like, and answers your questions. The treatment that you'll be starting on is quite common and people tend to respond well to it.

One of the things that I would suggest that you do is look for a support group in your area specifically for people with myeloma. Your oncologist may be able to put you in touch with one. Support groups are particularly helpful in dealing with the emotional aspect of starting treatment. And, if it's anything like the one I attend, you will learn a lot about the various medications, treat­ment philosophies, and all kinds of things related to living well with myeloma.

All the best for the start of your treatment and your response,
Nancy in Phila

[moonscape]

Re: Plasmacytoma, possible multiple myeloma diagnosis

by moonscape on Mon Jan 18, 2016 11:37 pm

Thanks all. Although I preferred life three months ago before this adventure began, I'm ready (if apprehensive about side effects) to get on with treatment.

Nancy - I actually was going to attend a support group (somewhat) in my area this past Saturday, the weather and a rugged night's non-sleep derailed that. They meet monthly, rotating among 4 hospitals, one closest to me is fine at 45 minutes away, the others are 1.5 hours so I'll see Saturday by Saturday if I'm up for that much travel time. I'm sure it would be worth it.

I asked my local oncologist how many myeloma patients they have in their practice, and she said about 10. That's not many, but when I see her this week I'll ask if they get together perchance, or if she'd ask the others if they're interested. It would be nice to have something closer, even if we met only occasionally.