[mrozdav]

Re: Any elderly multiple myeloma patients here?

by mrozdav on Sun Apr 12, 2015 3:34 pm

Marie: I am from Washington, D.C. I have been treated by a myeloma specialist at Johns Hopkins. I also have an oncologist here in DC. I can give you more information if you are interested.

If your mother has to have a bone marrow biopsy, I highly recommend that it be done with "conscious sedation." Even at Johns Hopkins they try to do it without, but if you firmly insist, they will offer it to you. For me it has made a big difference.

[mariec]

Re: Any elderly multiple myeloma patients here?

by mariec on Sun Apr 12, 2015 8:20 pm

Thank you so much mrozdav and Multibilly for your responses. As I am working to navigate all of this and stay strong and sane for my mom, I can't tell you how comforting that is.

I don't know if it is appropriate to respond to both at once, and I promise to catch up on all of the rules, so please pardon if my dual response is a faux pas.

mrozdav,

I would very much appreciate your sharing with me who at Hopkins you work with, and also, if you are willing, your DC oncologist. We are not happy with my mom's (mostly lack of re­spon­siveness, seeming intolerance of questions/seeking understanding of thinking, bedside man­ner of a brick, etc). We are braced for bone marrow biopsy as next step, and, if that is the case, I would like to be ready to ask for that to be done by someone else.

Thanks also for the tip on conscious sedation. I think that would be very helpful for my mom. If you have any additional suggestions as to how to get agreement to that, I would appreciate it. If preferable to communicate 1:1, let me know the best way to reach you. Otherwise, if you are comfortable posting, that is great, too.

Multibilly,

Thanks very much for your response as well, and for sharing the prior posting information re: FLC via 24-hour urine sample notwithstanding detection of FLC in serum. Thanks also for your encouraging and kind words. Soothes the soul. And you are so right about focusing on the things to be grateful for such as we're looking into this now in advance of any broken bones. I keep fuming that as long as my mom has had rheumatoid arthritis, neuropathy, and similar problems that no one thought to test for M-proteins. Instead, though, I need to focus on the fact that at least this rheum thought to do so.

I will report back with additional information once I have it. We are trying to remain calm in the interim, but I must admit that my head is spinning and nerves are jangled. All of the things that had seemed so important just a few days ago really don't matter anymore to me. Getting my mom the best care possible is my priority. We lost my dad to sudden cardiac arrest 6 years ago, and she has been living with me and my spouse since. I am so very grateful that we made the decision to move her in with us!

[mrozdav]

Re: Any elderly multiple myeloma patients here?

by mrozdav on Sun Apr 12, 2015 10:20 pm

Marie: My specialist at Hopkins is Dr. Carol Ann Huff. My oncologist in Washington is Dr. Patricia Conrad Rizzo. The two doctors work closely together and it was Dr. Rizzo who sent me to Dr. Huff once it looked as if I was progressing from smoldering myeloma to actual myeloma.

My induction treatment all took place at Hopkins where I also participated in a clinical trial. At this point, following Dr. Huff's recommendation, I have decided against a stem cell transplant, but am continuing treatment for the next two months with the addition of a weekly Velcade injection at the office of Dr. Rizzo. I will be returning to Dr. Huff in early June to discuss maintenance therapy.

Dr. Rizzo's practice does not have the capability to perform bone marrow biopsies with conscious sedation. At Hopkins, however, they do, but you must request it.

I would be happy to try to answer any other questions you may have.

[mariec]

Re: Any elderly multiple myeloma patients here?

by mariec on Mon Apr 13, 2015 4:00 pm

As promised, I am writing with update on my mom's PET/CT scan. We received really great news today. Doc just called me to say that PET/CT scan was negative. I've not yet seen a copy of it, but have requested. I've also learned that the level of Bence Jones protein detected in her 24-hour urine test was 41 mg/24 hour.

Local hem/onc advised that my mom come back for new lab work in June, and then perhaps every 3 months for the rest of this year. She also advised against a bone marrow biopsy at this time. I am a little confused about that, though, as I believe that it is fairly common practice when someone presents with the level of serum M-protein that my mom's blood test currently shows: app. 2.1 g/dL.

I am going to register as an official member here, and stay close to the expertise of this group so that I can better learn. Knowledge is power, and this is all very complicated.

Thank you, and God bless.

[mrozdav]

Re: Any elderly multiple myeloma patients here?

by mrozdav on Fri Apr 17, 2015 7:41 am

Mariec:

Here are answers to some questions you may have:

1. I, too, am on Medicare and Blue Cross / Blue Shield, but from the State of New Jersey, so the secondary coverage may be a little different. So far, just about everything has been covered regarding my treatments, BC/BS refuses to pay some very minor test bills because it claims that Hopkins is double billing, but this issue is being handled, is very minor, but annoy­ing on principle.
    
2. I do not know of the doctor you mention at Hopkins. I would contact Dr. Huff's office directly. Given the information that you have provided about your mother, I think that a myeloma special­ist needs to be consulted. My own treatment started when my M-spike was at 2.1 g/dL (21 g/L). I was actually in excellent health with no bone lesions or organ damage. Every patient is different, however, and a specialist in whom you have utter confidence is a necessity.
    
3. While there may be reasons for not doing a bone marrow biopsy, my own thinking is that my doctors would recommend it at this stage for your mother, given her test results. I held back on a biopsy until I was into the smoldering stage, but have had several more since my first. I think the biopsy is important for initial diagnosis and prognosis. Your mother will probably learn whether she exhibits certain mutations, which may impact treatment decisions. Myeloma is "patchy", so one can never be sure whether the biopsy results reflect the true state of affairs.

[Babzoid]

Re: Any elderly multiple myeloma patients here?

by Babzoid on Sat Aug 01, 2015 4:57 pm

My father (84 years old) was diagnosed with multiple myeloma earlier this year. He had gone to emergency one evening in February because the severe pain in his chest, which he had been suffering with for weeks, just got too much for him. X-rays were taken and he was told they were clear and he was sent home.

In May we visited the oncologist (who was treating a blood clot in his leg) and my dad complained to him about the pain he was still having in his chest / back area. The oncologist brought up the previous chest x-ray and noticed that there were 4 broken ribs!! Whoever read the chest x-ray in February missed seeing the broken ribs. This prompted the oncologist to do a bone marrow biopsy and we were then advised that my dad had Stage III multiple myeloma.

He was started on a series of dexamethasone (10 pills, 4 days on, 4 days off). This landed him in the hospital with a blood infection, a glucose reading of over 39, and complications with the blood clot. He was in the hospital for 11 days while they stabilized him. From the hospital, I took him directly to a retirement home, as it was obvious that he could no longer remain living in and looking after a house.

He now walks (mostly) with the aid of a walker. He has lost quite a lot of weight but still seems to have a reasonable appetite and looks forward to his (provided) meals. He takes 8 Percosets a day to deal with the pain in his back / shoulder area (which can't be good for the kidneys or liver). He still drives (locally) and is still sharp and with it. He enjoys reading and watching baseball, but doesn't do anything even slightly strenuous. He is frequently fatigued, but some days are better than others. Every morning he shaves, showers and dresses well. He has some days where he says he is "down and depressed" and "just doesn't feel like doing anything". He has been a VERY heavy (mostly beer) drinker since he was 15, but now says he doesn't really feel like drinking (although he will have one or two if someone else is having one). He is a heavy smoker (still), he is diabetic, and he has had problems with blood clots in his legs for the past 16 months, for which he takes Warfarin (Coumadin).

At the moment he is not taking any treatment other than the pain killers. We have an appointment with the cancer centre in mid-August for more blood tests to see "the state of affairs". I know they are going to be pushing for chemotherapy. I don't know if, at my dad's age and level of weakness, whether the chemo and/or other treatments will lengthen his life a bit, but lower his quality of living. I don't want to advise him to not do the treatments, but at the same time I don't want to see him suffer the indignities of the side effects of the chemo and drugs. He lives alone (in an apartment in an independent living retirement home), so if the chemo / drugs cause side effects such as vomiting, weakness, etc., in the night, there will be no one there to help him.

We live in Canada, so all the drugs are covered by our provincial health plan. My mom and brother have passed on, so it is just me, my husband and my dad left to deal with this. He says he is tired and just wants to "call it a day". Sometimes I think we are a lot kinder to animals when they are ill than we are to our fellow man.

[Little Monkey]

Re: Any elderly multiple myeloma patients here?

by Little Monkey on Sun Aug 02, 2015 8:58 am

It ticks me off when an ER doctor misses four broken ribs on an X-Ray; although I do understand that some hairline fractures aren't really visible on an X-ray.

[Nancy Shamanna]

Re: Any elderly multiple myeloma patients here?

by Nancy Shamanna on Sun Aug 02, 2015 10:10 am

Hi Babzoid,

I am sorry to hear of all of the health problems that you father is suffering from. If he could not manage on his own at an independent living unit in a retirement home, could he be moved to an assisted living home? There the staff could keep an eye on him.

I hope that he could find some treatment that would help with the myeloma, such as the oral pill Revlimid, or Velcade, which can be given at the cancer centre by subcutaneous injection. Uncontrolled myeloma could cause him a lot more pain and suffering.

Best wishes to all of you.

[Ginaseah]

Re: Any elderly multiple myeloma patients here?

by Ginaseah on Sun Aug 02, 2015 9:45 pm

My father was first diagnosed with smoldering multiple myeloma in 2003 at the age of 78. At that time I went to a local support group and told them what my father's numbers were and they said that his numbers were so low that he would probably die of something else before his myeloma progressed.

Well, my dad is now 90 and has been recently diagnosed with stage II and has just started taking a low dose combination of dexamethasone and Revlimid. My dad has a couple of comorbidities as well, high blood pressure and stage III kidney disease, and uses a walker.

I am trying to take things one day at a time. So far he has no side effects from the chemo drugs, but we are in early days.

My dad is also experiencing a loss of appetite. The nutritionist at the cancer center suggested he drink milk at every meal and have snacks of peanut butter and crackers and Boost in between meals. This seems to be helping and his appetite is improving.

It may seem strange but one of my biggest concerns is that my dad will develop diarrhea from the drugs and fall when trying to get to the bathroom.

I feel grateful to all of you here. I have been reading posts for a while and got lots of good information even before I registered.

[wvjim]

Re: Any elderly multiple myeloma patients here?

by wvjim on Mon Aug 17, 2015 9:56 pm

I'm a 71-year old male just diagnosed in June 2015. I have a lesion on 8th rib and have had three treatments of Velcade and Decadron. Starting 2nd round tomorrow and they are adding Revlimid (14 days on and 14 off). I'm wondering about side effects of Revlimid. I am tired a lot and weak in the legs sometimes.

My first post, so will let you know about treatment.