[sandy57]

Mother diagnosed a month ago & is very ill

by sandy57 on Tue May 06, 2014 9:24 am

My mother, who is 78 years old, was diagnosed with stage 3 multiple myeloma a month ago. For over a year, my mother was having terrible back problems, swollen legs and sciatica pain. The doctors all said to go to physical therapy. My mother was in a nursing home rehab for 3 months, and her legs got stronger, but she got to the point where she could no longer walk. She is afraid of falling. My mother also is a diabetic. She had blood work and it did show high protein levels, but her doctor thought that her kidney's were failing because of the diabetes.

I should let you all know that my mother hates going to the doctor. Everytime me or my father mentioned going back to the doctor because she was getting worse, she argued and wouldn't go. My parents house is on a hill and with lots of stairs, so to get my mother out of the house is a major feat. A few times we called the fire dept and they helped. I should mention that I live 14 hours away. I am flying up every other week. My work is being very understanding.

In the last year my mother has had 2 MRI's, the one last June showed no lesions, just a bulging disc. The MRI that she got a month and half ago showed lesions everywhere. My mother was getting out of bed and fainted, she fell and broke her ribs, pelvis, sacrum and some vertebre. Since her diagnosis, she has been in and out of the hospital. She is so weak and now has pneumonia. She now has lung issues. She has only had 3 chemo treatments of Velcade and a steroid. She is having panic attacks, which put her in ICU. I don't know what to do. She doesn't want to get out of bed, she is so weak. The doctors want her back in a PT rehab. She is so afraid of dying.

I find it hard to believe how this could have gone undiagnosed. All the symptoms were there. How could her primary care physician not see these symptoms? How do I get my mother up and moving? My mother was raised a strong Catholic. She is in denial. Her anxiety is being treated with Ativan and the hospital just recently put her on Lexapro also. She is so scared.

I have been reading the posts on this forum for a month now and decided to post. I think I just needed to vent. I want her to get better, her oncologist says that she could get a few years, but I don't know. Her health is declining. Thank you for listening to me.

[Eric Hofacket]

Re: Mother diagnosed a month ago & is very ill

by Eric Hofacket on Tue May 06, 2014 2:40 pm

Try not to be too hard on your primary care physician for not have seen the symptoms of multiple myeloma. In the last several years of reading the Beacon, stories like yours are not that unusual. Myeloma seems to be a tough thing to spot for those doctors outside of the field of oncology / hematology. Often myeloma seems to be accidently discovered while investigating something else. Back and rib pain and being tired are just not enough to raise the flag of myeloma.

Doctors see lots and lots of patients that have sore backs and are feeling tired, rarely is the cause myeloma though. I have had a few doctors tell me in urgent care they have never had a patient with myeloma before. I have heard numerous accounts of finding bone lesions on an X-ray or MRI, as in the case of your mother, being the first indication of myeloma to a medical provider. Abnormal blood lab results, often done for surgery as was my case, is another common first indication of something being amiss that leads to a myeloma diagnosis.

I feel big progress would be made in myeloma treatment and patient quality of life if a way could be found for doctors outside of the field of oncology / hematology to more easily identify it early in the disease stages, before significant bone and kidney damage is done.

[sandy57]

Re: Mother diagnosed a month ago & is very ill

by sandy57 on Tue May 06, 2014 6:49 pm

Thank you Eric for the reply! Guess I'm just venting. It's all so overwhelming.

[MattSchtick]

Re: Mother diagnosed a month ago & is very ill

by MattSchtick on Tue May 06, 2014 8:00 pm

Sandy you don't need to thank us for listening, that is easy, its you and your Mother who have the difficult tasks as you seem to be fighting battles on a dozen different fronts and I'm sure I speak for all of this community when I send my hopes and best wishes to you and all your family.

I can certainly empathize with the stress of being several hours travelling time from where you are needed (I live in Australia and mother in England) and also with stubborn parent syndrome and the worry of getting up and down many flights of stairs (especially in winter), but somehow with the help of others and the wonders of Skype and the internet we manage somehow.

Feel free to vent all you like Sandy. We all feel a need for that occasionally, I guess that is one of the functions of this website, and hopefully people with more experience and medical knowledge than I have can answer specific issues for you.

Keep us posted on progress and stay strong.

[cindylouise]

Re: Mother diagnosed a month ago & is very ill

by cindylouise on Tue May 06, 2014 9:25 pm

Sandy, this is a great place to air your concerns and frustrations.

I work in a skilled care unit in a nursing home, so I wanted to first address that concern. That may be the best thing for your mother at this time.It is a lot easier for someone outside the immediate picture to get your mom up and moving.

As her daughter your first concern is her comfort, her feelings, and even your own feelings. In a rehab setting, they will care about your mom's feelings and her pain. But they can treat her for those things, and then get her moving. And it doesn't always have to take a long time.

I actually had to have my own husband there because I couldn't work and get him up and moving after open heart surgery (just before his myeloma diagnosis). In two weeks time he was a different person.

The second thing I think you should know is that Lexapro is a great anti depressant, and one that works well if your mom is getting up there in years. And that can do a lot to help with the denial, and the getting moving.

I wish you all the best and hope there is improvement in her near future.

[sandy57]

Re: Mother diagnosed a month ago & is very ill

by sandy57 on Sun Aug 17, 2014 7:56 pm

UPDATE: Just wanted to update people on this forum. Sadly, my mother passed away on August 3, 2014, just months after her stage III diagnosis. Cause of death, hypoxemic respiratory failure, pneumonia, acute renal failure and multiple myeloma.

She had stopped chemo for a few months to try and get stronger, but that never happened. She was doing pretty good and had a positive outlook on being able to leave rehab and go home. She never walked again. Her PT was doing well.

The week before she passed she ended up in the hospital again with pneumonia and never recovered. She went into a "deep sleep" for 4 days and passed away at 3:30 am.

Thank you to everyone on these forums. I will continue to read everyone's post. Wishing others the best of luck.

[Toni]

Re: Mother diagnosed a month ago & is very ill

by Toni on Sun Aug 17, 2014 9:35 pm

Sandy - I am so very sorry to hear of your mother's passing. I hope you can take some comfort in knowing that many of us here can understand to some degree what you have gone through.