[Advodaughter]

82 year old mother just diagnosed, is struggling

by Advodaughter on Sat Sep 13, 2014 11:26 pm

My mom was diagnosed in July with smoldering myeloma following a bone-marrow biopsy (suspicions were raised by protein markers during a routine blood test).

She was complaining of back / rib pain then, yet nobody really seemed to think much of it. Scroll forward 5 weeks when she went in for a routine health check and discovered she'd lost 22 lbs [10 kg] since the biopsy. More tests ordered, but no treatment. She was having terrible back / hip pain, so was put in for an MRI and was awaiting results.

Last week, she got dizzy and fell - wound up in the hospital. No broken bones, but a bunch of bumps and bruises. They have said they will start treating the multiple myeloma as it appears to be active, but not until they have her blood sugar and anemia under control; they're even talking about waiting until after she does some rehab (to build her up after the fall) before starting any chemo to address the multiple myeloma.

She's very loopy (even when not on codeine painkillers), sleeping almost round the clock, is having a lot of trouble eating, in a lot of (generalized) pain and is thoroughly miserable. So far, she's had a transfusion, but it didn't seem to help her feel any better. Frankly, every day she's been in the hospital she has been less coherent, drowsier, more fatigued, complained of more discomfort, and looked worse.

I asked the nurse practitioner point blank if we were looking at a terminal diagnosis / palliative- care-only situation, but they keep stressing they will put her on chemo and slow this thing down. I'm struggling to understand why it was a diagnosis of smoldering in July - when she was already complaining of back pain - since it is obviously pretty active now! Is this kind of progression typical?

She's getting increasingly confused with medical information. I have health POA, so I can talk to everybody, but I just need to know what to ask so I can try to ensure she gets what she needs. What should I be trying to find out about to help her most?

Thanks in advance - I'm an only child and also having to deal with my extremely freaked out 83 year old dad, so appreciate guidance and support. Thank you!

[sandy57]

Re: 82 year old mother just diagnosed, is struggling

by sandy57 on Sun Sep 14, 2014 8:58 am

Hi Advodaughter,

Your story sounds very similar to mine and my heart goes out to you.

My mother was diagnosed with stage III multiple myeloma in March of this year. She also had anemia and my mother is also a diabetic. She had horrible back, leg and rib pain, the doctors told us a year ago that she had sciatica and 2 bulging discs. Mom took a fall in early March and broke her pelvis and several ribs and from there everything went downhill. Mom did do 3 chemo treatments but they were too much for her and made her very weak. We decided to stop the treatments so she could get stronger but that never happened. My mother lost her battle to multiple myeloma on August 3, four months from diagnosis.

Please keep reading posts from this site, everyone is so helpful. Even though I can't really give you much advice, I just wanted to let your know that my heart and prayers go out to you. NEVER give up hope! I wish the best for you and your mother.

[mikeb]

Re: 82 year old mother just diagnosed, is struggling

by mikeb on Sun Sep 14, 2014 11:53 am

Hi Advodaughter,

I'm very sorry to hear about your mother's situation. It sounds pretty scary.

I have one big question for you - is your mother being treated by a physician who specializes in treating multiple myeloma, or by someone who is more of a generalist, like a hematologist / oncologist? I strongly recommend that you get your mother checked out by a myeloma specialist ASAP.

I am not a physician, but based on my understanding, it seems like your mother should have started chemo already. Waiting until they get the anemia under control to start chemo is problematic, since multiple myeloma itself can cause anemia. So treating the myeloma should help with the anemia, not the other way around.

Good luck!

Hi Sandy57,

Please accept my condolences on the loss of your mother. Your story sounds very difficult too.

Mike

[Carol of Eden]

Re: 82 year old mother just diagnosed, is struggling

by Carol of Eden on Sun Sep 14, 2014 12:27 pm

Advodaughter, I agree with MikeB. Your mom needs a myeloma specialist if she does not yet have one, and if that is not possible in the short term, her general oncologist should absolutely be consulting with a multiple myeloma specialist. You might ask them how many myeloma patients they treat per year.

Is it possible that her confusion is due to hypercalcemia? That is, too much calcium in the blood. They should have tested her blood calcium. It is a common effect when myeloma causes de-calcification of the bone which leads to fractures. I have heard that treatment with Zometa (bone strengthener) can help reduce blood calcium, and it is a standard treatment for multiple myeloma to protect the bone (but not to stop the proliferation of the malignant plasma cells).

It is very concerning that they are not starting treatment right away and her condition is getting worse. I have heard that dexamethasone ("dex"), which is a standard part of treatment, can elevate blood sugar, and that could be a reason for their delay, but I think I have heard of patients being given the other drugs without the dex at least to start with. I would ask them about this.

Maybe the transfusions are to treat the anemia. I hope they are monitoring her kidneys carefully because, with no treatment, they could become affected.

I am so sorry for what you and your Mom and Dad are going thru. I hope it gets turned around fast.

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Sun Sep 14, 2014 3:44 pm

Hi -

Thanks for the responses! With luck, today I was there when one of the doctors was there and was able to talk to him myself. This was actually one of the junior doctors, but working with the hematalogical oncologist who is handling her case. My understanding is that multiple myeloma is one of his specialties.

As I understand it, when she came in following the fall, she was dehydrated and anemic in addition to bumped and bruised. They didn't want to start chemo before she'd recovered some strength to be able to cope with it. They are trying to get her OUT of the hospital and into rehab asap, as much to try and avoid infection risk as anything else. As soon as she has built up a little more strength, they will start chemo. He made it sound like they're looking at next week some time.

He seemed to think that, when diagnosed with smoldering, she was 100% asymptomatic. However, she is now considered symptomatic as there are bone lesions. I told him that she was complaining of bone pain even before her biopsy, and was able to give him the rundown on certain things that I think she may be forgetting to tell him. I also asked about hyper­cal­cemia (I've been doing my homework!), and was told that while it was slightly elevated, it wasn't much. At least now I'm in direct contact with people (I only got the POA done on Thurs­day) I can actually try to keep track of things a bit.

I asked point blank if they had staged her, and was told no.

She was actually a bit brighter today. It seems she had decided NOT to take the codeine painkillers overnight, so wasn't as sleepy and incoherent as she had been yesterday. Doctor said she had actually responded well to the transfusion and her counts were very much better, so that's one good thing.

I'm not naive enough to think that this thing is magically going to go away, but I do want as much information as I can, and to help her be as comfortable as possible. She's still so miserable. The nurses wanted her to eat, so I decided to sit and help her, and she was, shall we say, less than pleasant about it. She's always been a non-compliant patient, so nothing new there, but dang it's hard when I'm trying to do the right thing for her and it results in a hail of (frustration- and pain-generated)abuse!

PS - Yes the transfusions were to address the anaemia, and kidney function is being monitored. Kidney proteins / enzymes were what originally alerted them in July to look for multiple myeloma at all.

[NStewart]

Re: 82 year old mother just diagnosed, is struggling

by NStewart on Tue Sep 16, 2014 1:16 pm

You've gotten some very good advice from the others who have posted so far and you obviously have used that information well. I also would suggest that you ask for copies of the bloodwork that has been done and are doing and copies of the biopsy and scan results that have been done. It's important to keep track of all of those things.

The transfusion will help the anemia for the short term, but treatment of the myeloma is key to bringing the anemia under control. Bisphosphonate infusions of either Zometa or Aredia are also key in helping to prevent more bone damage. Both treatment of the myeloma and the infusions for the bones will also help to improve the pain level.

Yes, your mother's diabetes should be under control and then very closely monitored because dexamethasone will probably be part of her treatment regimen when they start it. The dex helps to potentiate the action of whatever drugs they decide on using to treat the myeloma. Ask the doctor what treatment regimen he plans on starting your mother on. I would think that getting her started on treatment should precede starting rehabilitation because of the bone problems she has.

You sound like you are doing the best you can and that is important. Keep up the good work! All the best to your mother, father and you,
Nancy in Phila

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Thu Sep 18, 2014 8:57 pm

Thanks.

She's been moved to rehab, and seems to be doing a little better. The therapy regimen there has actually been GREAT for her - she fights it a bit (she has always been an extremely sedentary person - has hated walking / exercise since she got a car in her 30's, and never looked back!), but even she admitted she got some relief and felt better after the sessions.

She's getting bored, which I take as a good sign, and even getting herself from bed to chair -- before the nurses want her doing it on her own. In fact, as I mentioned up thread, she is the LEAST compliant patient ever, and doesn't follow directions if she doesn't think she "needs" to!

She's still complaining of pain in/around the right hand ribs, although even that seems to have reduced somewhat in the past week. I'll need to touch in with her doctors again soon, but have been waiting for the dust to settle a bit.

My father was doing ok, but completely lost it on Tuesday, and screamed at me most of the day. He does not have dementia - that we know about - just kind of lost it under the pressure ... displaced his emotions onto inconsequential banalities, and I apparently was the lightning rod excepted to handle it all. OUCH.

Deep breath, regroups, and back in the medical saddle as soon as I can.

At least we're seeing some improvement. She's not "well", but she's a whole lot better than in the hospital last week. I'll probably try to call the oncologist(s) on Monday and see when they plan to start treatment.

[Ian]

Re: 82 year old mother just diagnosed, is struggling

by Ian on Fri Sep 19, 2014 1:07 am

Glad to hear that your mother seems to be doing better, Advodaughter.

I'm assuming from what you've written before that your mother has not yet started treatment for her multiple myeloma. That's probably okay, since her diagnosis was still smoldering myeloma as recently as July. It would be surprising, I think, for her disease to have advanced to a life threatening stage so quickly.

In the time that you have before she starts treatment, it probably would be helpful if you could arrange to speak to the physicians who will deciding on the initial treatment to give to your mother. Because of her advanced age and general health, her physicians probably should give her therapy that is not as intensive, and as likely to cause substantial side effects, than they might give to a younger, healthier myeloma patient.

If the physicians who are deciding on her myeloma treatment are myeloma specialists, then they are probably more than aware of what I just said. But someone who is not as up on the latest research about myeloma might be "stuck in his ways" (or her ways), and tempted to treat your mother exactly as he (she) would treat any other myeloma patient.

There is a lot of work being done right now by myeloma researchers focused on improving the treatment of older, less healthy myeloma patients. Researchers are more and more advocating that such patients get "milder" treatment than most other patients might receive. Again, someone who is up on these things would know all of this. But a general hematologist-oncologist, who may not see many myeloma patients on a regular basis, may not know this.

I hope your mother's health continues to improve. Please keep us updated on how she is doing, and don't hesitate to ask any questions that come up, either here or in a new forum thread.

Good luck!

[Advodaughter]

Re: 82 year old mother just diagnosed, is struggling

by Advodaughter on Sat Sep 20, 2014 9:44 pm

Thanks, Ian.

Is there anywhere I can read about elder-appropriate treatments? I reckon the more I know, the better I can frame the questions and get the answers I need. I do feel we need a plan for treatment at this point so, as mentioned, will be calling and trying to get some answers this week.

Visited and poor thing was having a very bad day today. She had codeine painkillers overnight, which we're learning makes her loopy for about 36 hours. She's incoherent for quite a while after the dose.

I'm still trying to discern what's bothering her so I can pass it on to the doctors, but it's hard. We can see she's not eating, that she's very drowsy, that she's losing words (or using the wrong ones), but she still feels like she's being pretty coherent and gets so frustrated when people aren't really understanding what she means. It's hard to tell how much of this is the pain drugs and how much is any disease complications.

She also keeps saying "my bones hurt", but we can't tell if that's just the turn of phrase - which she has used for years - or if it's LITERALLY what she means. Obviously, with this disease, that's a significant point, but she gets upset if I try to get her to clarify. Sigh.

This is hard, so just trying to take each day as it comes ...

[Beacon Staff]

Re: 82 year old mother just diagnosed, is struggling

by Beacon Staff on Sat Sep 20, 2014 10:10 pm

Hi Advodaughter,

You can find some discussion and references related to treatments for older patients, and those with other health problems, in this forum thread:

"Prognosis with pre-existing health problems?", Beacon forum thread started Sep 4, 2014

Also, see the myeloma section of this article,

"Individualizing Treatment Decisions for Older Adults with Hematologic Malignancies," 2013 ASCO Education Book

and if you want to keep reading, perhaps this article as well

Palumbo et al, "Personalized therapy in multiple myeloma according to patient age and vulnerability: a report of the European Myeloma Network (EMN)," Blood, October 27, 2011.

Note that, if you're in the U.S. or Canada, it is not as common as in Europe for newly diagnosed patients to be treated with regimens that include melphalan.

We suspect the main question the doctors will have to decide is whether your mother should be treated with a three-drug regimen, such as Revlimid-Velcade-dex (RVD, VRD) or cyclophosphamide-Velcade-dex (CyBorD, VCD), or a two-drug regimen such as Velcade-dex or Revlimid-dex.

Have you ever been told what your mother's "M-spike" (myeloma protein, M-protein, monoclonal protein, or paraprotein) is, based on recent tests? If you have, or if you have it on paper, what was it? (If you have the units from the test, that would be good as well.)

We doubt this is relevant because your mother was first diagnosed with smoldering myeloma not long ago. Thus, her M-spike is probably not that high. However, it can be the case in some newly diagnosed myeloma patients who have very high M-spikes that the high levels of monoclonal protein in their blood cause it to be viscous. This "hyperviscosity" can cause the patients to be confused.

Again, we doubt this is the case in your mother, but it would be easier to rule out of if you knew her M-spike. The units of the M-spike would be either g/dL (typical in the U.S.) or g/L (more typical elsewhere).

Hope this helps a bit. Please keep us posted on how you and your mother are doing. Good luck!