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Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 06, 2016 7:18 am

Thank you so much, everyone who has posted. Because I don't have a diagnosis, I haven't really told many people about this, and it's incredibly reassuring to be able to discuss my concerns with people who know exactly what I'm talking about.

Tracy, Nancy(s), Karen - yeah, the waiting part is horrible, thanks for commiserating. I was thinking to myself that I'd actually feel better when I got a diagnosis even if it is myeloma, just because at least I'll know. I'm one of those people who feels better the more they know, which is why I'm trying to learn as much as I can ahead of time. This forum is the best general resource I've found online, and believe me, I've been looking.

The internal medicine doctor who has been ordering all my tests has cut me loose, so to speak, and won't be seeing me again. I went to see my family doctor (who is great) yesterday because I wanted to know the results of the skeletal survey and most recent blood tests. I knew I had 'suspicious fractures'; my doctor read the report that was attached to the survey and told me that I had five 'lucent lesions that are consistent with myeloma', all on my rib cage. He also said my kappa/lambda ratio was 'a titch out of whack', and said that if I DO have myeloma at least it looks like we're catching it early.

I see the oncologist/haematologist at an outpatient clinic in Welland next week, although he won't be doing the bone marrow biopsy then, my GP says. I say the sooner the better, but it's not my decision.

KarenaD, I didn't know that the Juravinski Centre treated myeloma patients. I'm much closer to Hamilton than Toronto. I'm still trying to understand how Ontario handles this stuff (thanks tons for that info, Little Monkey, that's good to know); do I ask the oncologist/haematologist for a referral, or will I just be sent wherever they have the resources? I still feel like the Princess Margaret is the best centre for myeloma, but I can't drive or even travel much by myself, as I have a degenerative corneal disease (keratoconus) and very low vision - Hamilton would be a lot easier for my husband.

It's been over three months since I fractured the rib and over two months since they started trying to figure out why. Should I be concerned about the amount of time this is taking? Also, with an eye to seeking treatment outside of my own health care system here in Niagara, do you think I should request copies of all my test info to date?

Again, thank you, all of you who are helping me or others.

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by KarenaD on Fri May 06, 2016 11:36 am

Hi Robin,

Cancer Care Ontario currently funds six centres to perform stem cell transplants: University Health Network (Princess Margaret), Kingston General Hospital, London Health Sciences Centre, The Ottawa Hospital, Health Sciences North, and Hamilton Health Sciences Corporation (Juravinski). Juravinski Hospital has a dedicated hematology ward, and when I was having my autologous stem cell transplant there, a number of other patients were undergoing both autologous and allogeneic stem cell transplants at the same time.

Juravinski has 11 hematologist-oncologists on staff and a dedicated stem cell transplant team. Clinical trials are also run out of Juravinski. Due to the relative rarity of the disease, I believe that none of the Juravinski hematologist-oncologists treat just myeloma (they also treat leukemia and lymphoma patients). I think that Princess Margaret is the only place in Ontario with a few dedicated myeloma hematologist-oncologists.

Living in Guelph, my day-to-day treatments are handled by a hematologist-oncologist in Kitchener (who sees about 2 myeloma patients a day) – overseen by the team at Juravinski. As a myeloma patient (especially in the first 6 months after diagnosis), there are A LOT of appointments, and from a logistical standpoint, I could not make the necessary treks in to Toronto. It was a tough decision, but because I don’t have a complicated, high-risk case I made the decision to be treated in Kitchener and Hamilton. The Juravinski team is up to speed on developments in myeloma treatments, and when in doubt on difficult cases, they confer with colleagues in Toronto and elsewhere. So far, I haven’t regretted my decision and both of my hematologists-oncologists (in Kitchener and in Hamilton) spend a lot of time with me at each appointment explaining the intricacies of the disease and treatments, and they never rush me through the myriad of questions that I amass for each appointment.

Regarding your question about requesting records of tests taken to date, I think that is a very good idea.

Were your kidney / creatinine numbers normal? If that number was out of whack, I’d be concerned, and although you don't seem to have damage to weight bearing bones like the femur (which could cause major problems on fracture), you must be in some pain with your fractured ribs. The sooner you get into treatment if it is myeloma, the sooner you will feel better, and I’d be inclined to start putting the pressure on for earlier appointments. As you know, our healthcare system isn’t perfect, and an informed and persistent (but polite) patient usually gets better treatment than the one that sits back and passively waits for things to happen.

Hope this helps,
Karen

KarenaD
Name: Karen
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 4, 2015
Age at diagnosis: 54

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 06, 2016 4:09 pm

Karen, wow, thanks - that's very helpful. I understand the Juravinski/Princess Margaret thing a lot better now.

My creatinine is 42 umol/L, which LifeLabs has flagged as low - I don't know what that indicates, as everything I've read pertains to high creatinine. I don't even know if the test was done on blood or urine. My eGFR was 114 (with normal reported as greater or equal to 90 ml/min/173 m2). I haven't done any urine test other than the usual LifeLabs 'here, pee in this vial and then put it in that fridge by the door'. I do have one test result that says 'protein urine <^0.05 g/L but again, I don't know what that means.

I have yet to speak with anyone who can provide me with concrete answers, and am hoping the onc/haem doc will be a little more helpful.

So frustrating to have been told - over the phone, no less - that I might have myeloma or metastatic cancer, and then have to wait this long for diagnosis. I am fully aware of how hard everyone in the health care system works, and how overworked they are, but I do have to say, I appear to be the only person who feels any sense of urgency about this! Well, the husband too, he's getting pretty freaked out.

The ribs do hurt, but it's a weird sort of prickly, needling pain. I haven't been able to sleep lying down since February. I can't take NSAIDS (give me rapid irregular heartbeat, shakes, diarrhea), I can't take codeine (I'm one of the 20% who lack the enzyme to process it properly and it doesn't work at all), and although one doctor has prescribed Percocet, I don't like to take it because of the potential for kidney disease and besides, it makes me really fuzzy. Not good fuzzy, bad fuzzy.

Blah! I'm usually so good at researching stuff but all this has my head spinning like that girl in the Exorcist. It's a gorgeous day here and probably is in Guelph, too - thank you again for taking the time to help me wrap my head around this... stuff. (Normally I swear like a bag of sailors.)

Thanks again, Karen, here's hoping you have a lovely weekend.

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by Little Monkey on Fri May 06, 2016 11:54 pm

To add to what Karen said, London Health Sciences Centre also has a myeloma clinic, the three haematologists working out of the myeloma clinic. I do believe the three haematologists at the myeloma clinic at LHSC also deal with other extremely rare blood disorders.

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

Re: Best bring a cup of tea, this is going to be long

by Nancy Shamanna on Sat May 07, 2016 9:06 am

Robin Rosemary, I am sorry to hear that you are in pain, and hope that you get your appointments a.s.a.p.! I also went thru something similar to this at my dx, having many 'lucent lesions' and also wedge compression fractures of some vertebrae. The sooner one can get onto treatments, if it is determined to be myeloma, the better!

A myeloma patient will find over time that there are many in Canada who are working towards better treatments and outcomes. We have good health care, but IMO, what we are lagging in is getting the latest drugs available to us, outside of clinical trials. That is a work in progress. Currently, myeloma drugs available here are bortezomib, Revlimid, Pomalyst, and thalidomide. We would like to get Kyprolis, Darzalex and more. It all takes time I guess.

Every province has a slightly different take on health care. The Ontario system is not exactly the same as what we have in Alberta, so it's great that Karena and Little Monkey have been able to be so specific about how to approach the Ontarian system!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Thu May 12, 2016 2:13 pm

I had my first appointment with an oncologist/haematologist yesterday, and I know about as much as I did before the appointment. It was at a cancer clinic - not a brick-and-mortar clinic, but at the local hospital, where once a week an oncologist travels out from the central hospital of our health care system and sees patients for a day.

First his nurse read the four-page form I'd filled out beforehand, and then the doctor came in and did a brief exam. Then he sat down across from my husband and me, and said, "So I guess you've been told you have some kind of bone cancer."

"Not really," I said, "I've been told I might have myeloma, I've been told I might have metastatic cancer, I've been told I might have benign bone cysts, but nobody's told me anything for sure."

The doctor said that, in his opinion, I had 'some form of bone cancer'. I asked if that included myeloma and he held up a self-important finger and said not to interrupt him.

Then he said that as I had permeative lucent lesions on multiple bones throughout my skeleton - at that point I interrupted again, disobedient patient that I am, and said that as far as I knew, I only had lesions on my ribs. He disagreed. I disagreed with him. He sighed heavily and opened my chart and read for a while, and then said, "I guess I'll have to rephrase that. You have permeative lucent lesions ON YOUR RIBS" and then he continued on, said that we would need to do a bone marrow biopsy (BMB) at some point in the future.

I asked if the BMB would be conclusive, and he said that would depend. He said there are occasionally false negatives and false positives. He also said that if I had plasmacytomas, that the BMB might not reveal those and that I would then need to have a bone biopsy done of the actual lesions/fracture sites. I asked when I could get the BMB done, and he said we would book it next visit. I asked if he could do it right then and there, and to my surprise, he went and talked to his staff, and then he said yes, they could do it right now.

Holy cow, people, from what I've read here I didn't think it'd be that bad. He had me lie on my stomach, then he located the site he wanted and cleaned it and put on the sterile drape. Then he injected the lidocaine, lots and lots, and although it wasn't exactly pleasant it wasn't awful. I'm heavily tattooed so I'm familiar with needles and know how to breathe through discomfort.

Then he did the incision, which I could feel only as a tug. Then he put in the... trocar, is it? and started twisting it against the bone. Now THAT hurt. What's more, it just went on and on and on - I had my head turned to one side and could see both the nurse's face, and the wall clock - it was just shy of ten minutes for him to get the thing into my hip, and the nurse started to look horrified at around four or five minutes. He kept saying how dense my bones were, I almost felt guilty!

Anyway, he finally got the bone sample he wanted but he said he was unable to obtain a sample of marrow, he said it was 'too dry' and his needle wasn't long enough. He said that hopefully there would be enough marrow in the bone sample for the lab to culture whatever they needed.

I asked how long for results, and he said we should have partial results in a week, but that it could take up to three weeks depending on what tests the lab did. He said I was to come back next week to the cancer clinic and we'd discuss the results then.

He put a stitch in the incision and said I could take an aspirin when I got home, if I needed it, but that most of his patients were fine without any painkiller. I am a bit of a stoic and usually pride myself on my pain tolerance, but the only way an aspirin would have helped with this pain was if I first dropped it in forty ounces of vodka.

After about an hour I could really feel it and it felt for all the world like someone had broken a baseball bat across my hip - I couldn't walk up or down stairs, couldn't bend the leg, I mean it HURT. It's much better today, and the incision looks fine, but I can see it's going to be a beauty of a bruise.

So, is that normal? Am I really such a wimp, or did my BMB hurt more because he had to work so hard at getting the sample? I did ask initially for the same sedative I'd had for a colonoscopy, and he said he never used sedatives, so I figured I'd be good. Tell you what, if he didn't get a good enough sample, I am not inclined to let this man near me with anything sharp, ever again.

And speaking to that - when I go to the clinic next week, is it too soon to ask for a referral to Princess Margaret? I may not have a diagnosis by then, but if it is myeloma, I want to be referred there ASAP and get the ball rolling. If it isn't - well, can't they figure it out there, from further testing, and direct me to the proper place?

Thanks to all of you who read, as always, and special thanks to those who answer. I know you're all dealing with your own situations and yet find the time to speak with me - it is hugely appreciated, I assure you. I wish I had something to contribute in return.

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Thu May 12, 2016 3:22 pm

I just accessed my latest lab report online and it says my calcium is 2.40 mmol/L, with normal range being between 2.15 and 2.60. Free light chains test still pending.

Am I being a total idiot for hoping this means I don't have myeloma? Isn't calcium a big indicator?

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by Nancy Shamanna on Thu May 12, 2016 3:41 pm

Hi Robin Rosemary,

I remember getting my first BMB, and that was awful too! It hurt a lot! I also just had lidocaine. The medical staff were very nice about it, but the pain was awful. I am not mad keen on getting BMBs, but I had them before and after the stem cell transplant too, but those were with sedation.

I just wondered in your postings if you have had the blood tests done for the serum free light chains and also the SPEP test done for the myeloma markers, the immunoglobins?

When I get monthly blood tests done (which are to do with the fact that I am taking treatments), the tests routinely include a complete blood count. WBC, RBC, HGB, HCT, MCV, MCHC, RDW, Platelets, Neutrophils, Lymphocytes, monocytes, eosinophils, basophils and immature Granulocytes. Also in Chemistry, are the sodium, potassium, chloride, CO2, Anion gap, creatinine, eGFR, Calcium, total protein, albumin, bilirubin, Alt, Alk Phos., LDH, albumin, Beta globulin 2, Protein SPE, ALPHA-1 globulin, Alpha-2 globulin, Beta Globulin, Gamma globulin, IGA, IGG, IGM , Kappa free, Lambda Free, and the kappa/lambda ratio. I always think that I am being well monitored with the blood tests.

I was tentatively diagnosed initially on blood tests, and then had the BMB and skeletal X-ray survey to confirm those results. The BMB results are also used to determine chromosomal profiling. Patients can be put into differing 'risk' categories from those results.

Hope that helps!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Best bring a cup of tea, this is going to be long

by Multibilly on Thu May 12, 2016 4:04 pm

Hi Robin,

A high calcium level (hypercalcemia) is just one of several indicators that may or may not signal that you have symptomatic multiple myeloma. But while your normal calcium level won't confirm if you have multiple myeloma or not, it's good that you have a normal calcium level.

Building on Nancy's nice post above, the most important lab tests to first understand in your situation are the following:

Serum Protein Electrophoresis
Serum Immunofixation*
Serum Free Light Chain Assay
Quantitative Immuonglobulins (IgG, IgA, IgM)

* From one of your earlier posts, it sounds like you had this test done earlier. That was the test that told you "discrete underlying band of IgG type kappa detected". Was a new serum immunofixation performed this time around?

Do you have any of the above lab reports?

Then you would next look at your hemoglobin, serum creatinine and calcium levels to see if any of these are out of range.

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

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 13, 2016 7:28 am

I can access my lab info online, but don't see the specific wording that I see in your post, Multibilly, or other posts on this site. I assume it's because I haven't had some of these tests yet, but maybe it's because the Canadian wording is different? Sorry, I'm still clueless about a lot of this although I'm trying to get it.

I have one test that refers to serum proteins.

Protein Electrophoresis

NOTE: Densitometer scan available, by regular mail only, upon request.

Total Protein - 75 g/L
Albumin - 50 g/L
Alpha 1 Globulin - 2 g/L
Alpha 2 Globulin - 8 g/L
Beta Globulin - 8 g/L

Please note: Because the patient's monoclonal band is masked by the migration of a normal protein fraction, future follow-up investigations should include immunofixation (IF) analysis.

Gamma Globulin - 8 g/L

Immunofixation:

Discrete underlying band of IgG, type kappa, is detected. Further investigation with quantitation of immunoglobulins is suggested.

I don't see any reference to 'serum immunofixation' in the five lab reports that I can access.

There is a test called 'serum proteins' that says this

IgG - 10.14 g/L
IgA - 0.47 g/L
IgM - 1.19 g/L

Immunofixation:
Discrete underlying band of IgG, type kappa, is detected.

I don't have anything called a Serum Free Light Chains Assay; I have this test that refers to free light chains, and the same test has been ordered again with results still pending.

Free Light Chains

Free Kappa - 11.4 mg/L
Free Lambda - 6.7 mg/L
Kappa/Lambda Ratio - HI 1.70

I don't see anything called Quantitative Immunoglobulins. Only reference that sounds close is

Beta 2 Microglobulin.

Beta-2-Microglobulin - 115.0 nmol/L

Based on this, and what folks here have said, I seem to be short a couple of tests - or is SPEP the same as serum protein electrophoresis?

I'd appreciate any advice about what tests I should ask the doctor to order. And of course I'd really appreciate any interpretation of the test results above.

I know it can take months, or more, to get a diagnosis, but I'm frustrated and frightened and want to talk to a doctor who is able to give me some direction. I know I'm being unreasonable and that they don't have all the information they need. I guess I just wish they'd order the necessary tests and get the info so I can find out what the heck is going on.

Thanks, as always. And happy Friday the 13th!

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

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