[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Sun Sep 21, 2014 2:11 pm

Thanks so much.

Just back from another visit, and she has declined since yesterday. She's not as loopy (no codeine last night), but she obviously feels dreadful, can't eat AT ALL, and is struggling to drink anything, is in pain, and so, so, miserable. She's frustrated, exhausted, weak and scared.

I did manage to get a copy of the most recent bloodwork the nurse had access to. I'd definitely welcome help "interpreting" these results so I can understand better what's going on, and what I need to ask her doctors.

If something isn't listed, it's because it's well within normal ranges, but here are the ones outside normal, or near, the margins:

Chloride 104 (high normal)
Anion Gap 15 (max-normal)
Bun NH 26 (max-normal)
Creatinine NH 1.12 (high)
Calcium 11.3 (high)

WBC - 3.0 (low)
RBC- 3.36 (low)
HCT 34.2 (low)
MCV (101.8 (High)
MCH 33 (high)
Platelets 156 (low normal)
Neutro absolute 1.4 (low)
Mono % 16.5 (high)

Prealbumin 10.7 (low)

"Low plt and low IPF suggests a possible bone marrow production ... Clinical evaluation recommended "

(Duh - In a patient with diagnosed myeloma that's supposed to be a surprise?!)

So ... What do I need to be asking her doctors at this point? Thanks in advance for the assistance!

[Beacon Staff]

Re: 82 year old mother just diagnosed, is struggling

by Beacon Staff on Sun Sep 21, 2014 4:36 pm

Sorry to hear that your mother's condition has declines some, Advodaughter.

Has your mother had any serum protein electrophoresis (SPEP), immunofixation electrophoresis (IFE), or free light chain (Freelite) testing done and, if so, could you share those results (with units, please)?

Also, has she had a bone marrow biopsy and, if so, what was the plasma cell percentage that was reported from that test? (The bone marrow biopsy also might give information on any chromosomal abnormalities present in your mother's myeloma cells, but that's not quite as critical right now. Plus, that information is hard for anyone other than a myeloma specialist to interpret!)

The results of the tests that we just mentioned would give a clearer picture of your mother's myeloma. As it stands, the tests you've shared indicate that your mother's kidneys are showing some signs of impairment, and she has somewhat elevated levels of calcium in her blood.

However, based on what we've seen reported by other myeloma patients here in the forum -- and, remember, we're not physicians -- these results do not suggest that excessive damage has occurred to either her kidneys or her bones. This would be consistent with her having been diagnosed initially with smoldering myeloma just a couple of months ago.

As we said, though, it would be helpful to have the other results we've mentioned to get a better picture of her myeloma.

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Sun Sep 21, 2014 5:59 pm

Again, thank you SO much. Really, I can't say it often enough. <3

Yes, she had a bone marrow biopsy which was when she was diagnosed as "smoldering". Some indication of disease, but at that time (end July), they believed it to be inactive. I don't have the stats/results on that (although will ask if they can provide for me).

At the moment, this is the only bloodwork info I could get. The RN at the rehab center just pulled up the most recent batch in her file, and this is what there was! Your info is EXACTLY what I need to know. I've learned over the years that with many, many, doctors, until you ask the question in "their" language, you can't get answers. I used to work as a temp secretary in a hospital when I was in college, so I kinda clued into the lingo, although this particular condition wasn't one that ever crossed my desk, so I'm starting from scratch .... as well as it being 25 years later!

The rehab center wants me to call their on-call doctor tomorrow morning, although I'm thinking I should probably just cut to the chase and call the oncology department. If I don't start getting some reasonable answers soon – even if they're not the answers I want to hear, I want INFORMATION and not blah, blah – I may be shopping for another oncologist for her.

Fortunately, we are in a town with multiple highly-regarded medical schools and hospitals, so there will be no shortage of qualified people to check out if need be.

But, as always, this has to go by stages. Tomorrow, phone calls, more questions, and then see what we get.

[Toni]

Re: 82 year old mother just diagnosed, is struggling

by Toni on Sun Sep 21, 2014 8:08 pm

Advodaughter - Very glad to hear you are beginning to get some real information! I hope for you and your mother that she will be relieved of her pain and discomfort and you will be able to get the answers you need to help her. Big hugs! This is hard.

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Mon Sep 22, 2014 7:19 pm

INFO!! M-spike 4500. IgA (not IgM) on September 11. Enlighten me what this means?

Have finally spoken to all her doctors. At this point, nobody's quite sure exactly what's going on, but AT LAST they're all talking to each other. Her oncologist and the on-call doctor at the rehab center have plans to talk directly, so we may be able to figure out what happens next.

One possibility is it's a UTI which is causing the current acute confusion / discomfort. Another is whether or not the myeloma is simply highly active / aggressive and causing more trouble.

So, they have to talk and figure out whether or not she needs to start myeloma treatment even before she's feeling better, on the grounds of getting it under control a bit may help her feel better, or whether they still need to build her up before starting treatment. It seems like he is considering a Revlimid / dex regimen for her.

The other alternative is that this thing is running riot and we jump to palliative care. But they need more info (more bloods / chems have been ordered), and then we will hopefully know what we're up against. Whoosh.

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Wed Sep 24, 2014 10:46 am

Anybody on that m-spike info? We have a "Care Plan Meeting" for her tomorrow - I'm not even sure what that means, atlhough presumably it's deciding whether she stays in rehab, goes back to hospital, or goes home. Maybe it means they've clarified the diagnosis (staging?). Dunno. As always, just trying to get enough information to understand what we're told.

[NStewart]

Re: 82 year old mother just diagnosed, is struggling

by NStewart on Wed Sep 24, 2014 1:50 pm

Advodaughter-

Unfortunately an M-spike of 4500 doesn't mean a whole lot without the units of measurement. That could be the IgA total in the immunoglobulin test that gives the numbers for the IgG, IgM and IgA.

The M-spike number may be given below the total immunoglubulin numbers and will have a written evaluation along with it. This will be in the results of the SPEP. It is usually noted as a number like 3.1 g/dl or 31 g/l in the kappa, or lambda, range with, or without, paraparesis noted.

Anyway, this is a high number for the IgA. If they don't recommend starting treatment ASAP, then they need to give you a really good rationale for not treating. If they suspect a UTI, then they should be doing a urinalysis and starting her on treatment for that, too. They are not mutually exclusive.

I still suggest that you enlist the help of a myeloma specialist. This is an oncologist who treats only people with myeloma, not one who has as one of their specialties myeloma. Has your mother had an MRI or PET/CT of the areas where she is complaining of pain to see if she has any bone lesions or fractures? This should be done if it hasn't been. Skeletal x-rays may not be good enough to show any damage..

Good luck tomorrow and keep us up with what is decided for your mother.

Nancy in Phila

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Wed Sep 24, 2014 11:50 pm

Thanks. At this point, I'm not even sure how I'd go about moving her to another doctor - she likes the one she's working with, and I suspect may be reluctant to change. It's just hard to tell whether they're just taking a more lax approach as she's elderly and not in great condition, and her prognosis is therefore poor no matter what, or if she's just getting caught "between the cracks".

On a plus note, I called today and she was a million times better than she's been since she first went into the hospital. She's still on codeine so a bit loopy, but her voice sounded strong and normal, she was laughing (appropriately) at things that were said, she was energized, and sounded like herself for the first time in two weeks.

I couldn't get much information out of her regarding what had been done (change of pain meds? antibiotics?), but want to check in with the nurses / doctors tomorrow and see if there was a change in regimen, or she has simply perked up a bit. And no, I don't think it was euphoria - she'd finally had a bowel movement, claimed that her appetite was back and she had eaten two big meals, and was just generally more "normal".

[Dr. Ken Shain]

Re: 82 year old mother just diagnosed, is struggling

by Dr. Ken Shain on Thu Sep 25, 2014 10:19 am

Very difficult situation to be in for sure. Obviously, without being there or knowing the details of the case, it is hard to make any definitive recommendations.

That being said, being 82 and having myeloma does not mean that there are not therapies that will work at controlling disease and be tolerable.

Depending on your mother's presentation, you may need to wait for her to get out of the hos­pi­tal (due to infection, general weakness, etc.). However, if the reason she is in the hospital is the result of progression of her smoldering myeloma to active myeloma, not much will get better unless she is treated, especially if she is having issues with her kidneys or high cal­ci­um. The anemia can be supported with transfusions or erythroid stimulating agents, but if it is related to the myeloma, myeloma treatment will still be important. It is always advisable to see a myeloma specialist, if possible.

Whether now or after rehab:

1. Treatment with Velcade (bortezomib) and low-dose dexamethasone (for her age and diabetes) is reasonable, especially if new onset of kidney insufficiency is noted.
2. Revlimid (lenalidomide) and low-dose dex (or even Revlimid as a single agent) is also reasonable. In fact, if she is classified as standard risk by molecular studies, I would suggest simply single-agent Revlimid.

If her doctors are hesitant to start those medications, even pulse dosing dex for a short period of time might be a start while she is in the hospital (or rehab).

In some circumstances, patients remain too frail even for those therapies. In those settings, it is important that everyone be open and honest with each other so that appropriate, albeit difficult, decisions can be made (in my opinion).

However, I would remain hopeful at this point.

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Thu Sep 25, 2014 4:59 pm

Dr Ken, thank you SO much for commenting.

So, the reason she was so much better yesterday is they FINALLY gave her some dexa­metha­sone! I had a hunch that something had changed for that kind of drastic improvement, but she didn't know, and it was only at her care plan meeting today I managed to talk to her doctor and find out exactly where we're up to. It's been a productive day, even though I'm very frustrated by "the system".

Her oncologist and the on-call doctor at the facility are now talking and have a plan worked out, pretty much echoing everything you say above. The glitch is doing it in such a way that it is covered by insurance - the delay appears to be an administrative problem rather than medical one, which is where I'm getting frustrated. I understand that she is an in-patient due to the fall, but everything that's preventing her from GETTING BETTER seems to be myeloma related. Therefore, doesn't it make sense to treat the cause instead of the symptoms?! OY.

However, some progress. The added value of dex is the increase in appetite - she's had three full meals for the first time in WEEKS, so even if that's often a negative side-effect, in her case, it's a good one. The plan is I believe to add some Revlimid as well as some bisphosphonates to address bone loss. This seems consistent with what I've been reading, so I'll hold the thought that they're on top of it at last and will appropriately be ensuring she gets the treatment she needs.

I think they're envisaging another 10-14 days in rehab, and then home, which presents a whole different set of problems (old house with lots of stairs), but just taking each crisis as it comes up to meet me!!

Thanks again for your comments. Very reassuring to hear that the treatment being suggested is consistent with your own take on the situation.