Hi Everyone,
I have written a couple of times about my mom having multiple myeloma. Quick synopsis - She is 75, was diagnosed in February, and started treatment of Velcade and dex. Has been through 5 rounds. She has not responded how they had hoped. Her numbers moved slightly, although it has improved some.
They decided to cease Velcade and go with radiation. My mom also has RA and some other health issues. The choice to switch to radiation was made as the doctor wanted a decent shot at remission or a very good response, and questioned her ability to tolerate more chemo. She begins radiation today.
My mom has fallen into a very, very deep depression. It has been a terrible year, with both my parents having major illnesses. My dad had a heart attack about 2 weeks ago and is in rehab and improving. She seems to have gotten to a place that she is nearly incapacitated with depression. I would say it is worse than the cancer is at this point. No energy, listless, confused, no appetite, constant panic attacks.
She says that all her life has become is an endless doctor appointment. I don't think she is afraid of the radiation, at least she has said that she is not. I got her to go to the doctor yesterday and he upped her anti depressant and gave her Xanax (alprazolam) plus a referral to a psychiatrist.
While she is prone to depression, is this a possible side effect of Velcade / dex?
Obviously the situation with both her and my Dad is very depressing - he had a major stroke a year ago but improved beyond what we thought he would. Life has really changed for them overnight. I am thinking about calling her oncologist today and talking with him about it (I am her health surrogate).
If others have dealt with this aspect of the illness, any advice would be greatly appreciated. Thank you.
Forums
Re: Dealing with depression - any suggestions?
I think it is likely your mom's overall situation. As we grow older, I believe we look at life differently, and a multitude of events that take a sizable chunk out of life is probably more meaningful when one is older.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Dealing with depression - any suggestions?
Wayne takes the cat -bird seat,..and is spot on. He has the age and life experience to directly point out a cherished viewpoint.
My comments are more directed at you..... Caregiver ?
First, avoid depression in yourself --at all costs. Stay healthy.
second, Treat depression (including getting prof help) once you recognize it in yourself.
third, Your mom is describing what it's like to have multiple myeloma / cancer--which means: your (her) life is no longer your (her) own. Yes, often the first 2 years with this disease--countless MD appts / Procedures / Surgery /Treatments ruled my life. That is "Normal". It's a nasty disease.
fourth, don't tell your Mom how to feel...Dad either. They need to go thru what they are going thru. Family members telling them to "Buck-up" and "stamping their feet" in frustration helps no one. You really have a poor idea of what they are going thru. They are not children. Let Dr Freud do his thing. Let the meds work.
fifth, Its their health. Monitor, report, and assist--but It's their Health. It's a boundary for them.
My MD brother ( at Diagnosis) insisted that I close my Office, retire, go on disability, etc and prepare to be dead in less than 5 years. He is a wonderful Internist and a neat guy--but he's missed it on this one...my Oncologist says I may live 10 years +.
Other family members were worse....or just complete idiots--about my Health. I had to tell them to just go away...and don't come back. You quickly resent people who turn everything into ...this is all about me and the impending rejection / abandonment by my parent / brother/ uncle, rather than appreciate the patient's perspective. Help is one thing--but taking over and being controlling is a crock. IT IS NOT ABOUT YOU--FAMILY MEMBER.
sixth, treatment is varied and tough. Radiation kicked my butt --after I finished it (it's cumulative). Velcade (induction) was hard on me--Peripheral neuropathy just sucks! Neupogen is a crap experience. Aphoresis is surreal. Surgeries are Spiritual and tough.
seventh, I am a single Parent. In retrospect, I feel blessed to have gone thru what I did (Surgery, Radiation, Chemo, stem cell collection, more Surgery, more Chemo, etc) WITHOUT someone Nagging at me constantly. I was free to focus on MY treatment and MY recovery. My kids were wonderful. My friends were perfect. My Providers attentive. I had lots of appropriate help. Messed up family members stayed away (for the most part) I personally was magnificent--albeit, I spent a lot of nights staring at the ceiling and Muttering " What the F*** am I gonna do now?". A lot of fear. ( It's been two years plus since I could even grade my own work in this process)
eighth, you don't realize things until later--like how well I came thru the past 2 years ! Your post made me focus on my own journey--and how it is hard to describe to family members and "Well-People"--whatever the H*** that term means...
Serendipity definitely counts. I came thru a LOT..and did it without unnecessary rancor and problems. This is important as cancer (even with good results) leaves you with a sense of a "living in a New Normal". There are things I can no longer do--but there are many things I still can do--if I adopt a "New Normal" mindset. This is probably the greatest thing I feel I have accomplished. Your folks will hopefully grasp this...and prosper. Let them do this. Acceptance is just harder for some folks.
Ninth, this an opportunity to get close to your folks --WITHOUT SMOTHERING THEM. It is a rare Privilege to connect so closely with another human being. It is highly spiritual.
Tenth, Dignity Counts. Try and respect that and to practice that in all your affairs.
Good luck.
My comments are more directed at you..... Caregiver ?
First, avoid depression in yourself --at all costs. Stay healthy.
second, Treat depression (including getting prof help) once you recognize it in yourself.
third, Your mom is describing what it's like to have multiple myeloma / cancer--which means: your (her) life is no longer your (her) own. Yes, often the first 2 years with this disease--countless MD appts / Procedures / Surgery /Treatments ruled my life. That is "Normal". It's a nasty disease.
fourth, don't tell your Mom how to feel...Dad either. They need to go thru what they are going thru. Family members telling them to "Buck-up" and "stamping their feet" in frustration helps no one. You really have a poor idea of what they are going thru. They are not children. Let Dr Freud do his thing. Let the meds work.
fifth, Its their health. Monitor, report, and assist--but It's their Health. It's a boundary for them.
My MD brother ( at Diagnosis) insisted that I close my Office, retire, go on disability, etc and prepare to be dead in less than 5 years. He is a wonderful Internist and a neat guy--but he's missed it on this one...my Oncologist says I may live 10 years +.
Other family members were worse....or just complete idiots--about my Health. I had to tell them to just go away...and don't come back. You quickly resent people who turn everything into ...this is all about me and the impending rejection / abandonment by my parent / brother/ uncle, rather than appreciate the patient's perspective. Help is one thing--but taking over and being controlling is a crock. IT IS NOT ABOUT YOU--FAMILY MEMBER.
sixth, treatment is varied and tough. Radiation kicked my butt --after I finished it (it's cumulative). Velcade (induction) was hard on me--Peripheral neuropathy just sucks! Neupogen is a crap experience. Aphoresis is surreal. Surgeries are Spiritual and tough.
seventh, I am a single Parent. In retrospect, I feel blessed to have gone thru what I did (Surgery, Radiation, Chemo, stem cell collection, more Surgery, more Chemo, etc) WITHOUT someone Nagging at me constantly. I was free to focus on MY treatment and MY recovery. My kids were wonderful. My friends were perfect. My Providers attentive. I had lots of appropriate help. Messed up family members stayed away (for the most part) I personally was magnificent--albeit, I spent a lot of nights staring at the ceiling and Muttering " What the F*** am I gonna do now?". A lot of fear. ( It's been two years plus since I could even grade my own work in this process)
eighth, you don't realize things until later--like how well I came thru the past 2 years ! Your post made me focus on my own journey--and how it is hard to describe to family members and "Well-People"--whatever the H*** that term means...
Serendipity definitely counts. I came thru a LOT..and did it without unnecessary rancor and problems. This is important as cancer (even with good results) leaves you with a sense of a "living in a New Normal". There are things I can no longer do--but there are many things I still can do--if I adopt a "New Normal" mindset. This is probably the greatest thing I feel I have accomplished. Your folks will hopefully grasp this...and prosper. Let them do this. Acceptance is just harder for some folks.
Ninth, this an opportunity to get close to your folks --WITHOUT SMOTHERING THEM. It is a rare Privilege to connect so closely with another human being. It is highly spiritual.
Tenth, Dignity Counts. Try and respect that and to practice that in all your affairs.
Good luck.
-
Rneb
Re: Dealing with depression - any suggestions?
Lots of really good things said here.
I saw both sets of my grandparents go through similar circumstances with a variety of health problems that was leading to deteriorating quality of life at a similar age. They saw many of their close friends die and they felt alone and being the last one left. 75 is a pretty good long life.
A question that maybe needs to be resolved is does your mother have the spirit to fight for the possibility of a decent remission, or is she resolved at this point to let nature run its course. Maybe once she decides that with herself she will find some comfort and peace.
I saw both sets of my grandparents go through similar circumstances with a variety of health problems that was leading to deteriorating quality of life at a similar age. They saw many of their close friends die and they felt alone and being the last one left. 75 is a pretty good long life.
A question that maybe needs to be resolved is does your mother have the spirit to fight for the possibility of a decent remission, or is she resolved at this point to let nature run its course. Maybe once she decides that with herself she will find some comfort and peace.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Dealing with depression - any suggestions?
Thank you all. Rneb you make some good points. No one is smothering my parents -- not me or my siblings. No one thinks this is "about them", or meddles in my parents choices.
I think my dad not being there has sunk my mom deeper than she already was. She is clearly in need of more than just "letting her decide" what to do. She can no longer decide, she is barely eating or drinking, sounds confused, is forgetful, is depressed and is in bad shape.
I did contact her doctor today and I am glad that I did. She has agreed to see him tomorrow. He fears dehydration and malnourishment and she has a history of anemia and low potassium. She is so weak on Velcade / dex that going to the bathroom exhausts her. He and the oncologist will recommend whether to continue with radiation or perhaps give her a break from treatment and let her mind and body rest.
She went to her first radiation today and freaked out so badly that the treatment was halted. She just told my sister this evening that she has such bad diarrhea that she can't stop going to the point that she can't control it. She has told no one about this -- not her oncologist or her GP that she saw yesterday. We will address that tomorrow.
If my mom doesn't want to do treatment, or if she wants to do something alternative because she thinks it will work, I will support whatever she decides. If she chooses to go forward with radiation, all the support in the world. Maybe she doesn't really want to do treatment. I have thought maybe she doesn't, and she is doing it because she thinks she has to. I hope her doctor will be able to figure that out.
I thank you for all you wrote. It's very comforting to read all your stories.
I think my dad not being there has sunk my mom deeper than she already was. She is clearly in need of more than just "letting her decide" what to do. She can no longer decide, she is barely eating or drinking, sounds confused, is forgetful, is depressed and is in bad shape.
I did contact her doctor today and I am glad that I did. She has agreed to see him tomorrow. He fears dehydration and malnourishment and she has a history of anemia and low potassium. She is so weak on Velcade / dex that going to the bathroom exhausts her. He and the oncologist will recommend whether to continue with radiation or perhaps give her a break from treatment and let her mind and body rest.
She went to her first radiation today and freaked out so badly that the treatment was halted. She just told my sister this evening that she has such bad diarrhea that she can't stop going to the point that she can't control it. She has told no one about this -- not her oncologist or her GP that she saw yesterday. We will address that tomorrow.
If my mom doesn't want to do treatment, or if she wants to do something alternative because she thinks it will work, I will support whatever she decides. If she chooses to go forward with radiation, all the support in the world. Maybe she doesn't really want to do treatment. I have thought maybe she doesn't, and she is doing it because she thinks she has to. I hope her doctor will be able to figure that out.
I thank you for all you wrote. It's very comforting to read all your stories.
Re: Dealing with depression - any suggestions?
I'm sorry your Mom seems to be having difficulties. Linear Accelerators are scary things.
No decision by her, .....is a decision. For now.
Perhaps the allowance of a tincture of time for the meds to act, to help her "right herself"...?
Take care of yourself.
Good Luck.
No decision by her, .....is a decision. For now.
Perhaps the allowance of a tincture of time for the meds to act, to help her "right herself"...?
Take care of yourself.
Good Luck.
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Rneb
Re: Dealing with depression - any suggestions?
Kbev, good luck with your Mom. It sounds like a difficult situation. In answer to your direct question, I don't think that Velcade itself has been linked to depression. In your Mom's case, it's probably the recent events cascading down on her. But I'm not an MD, so this is my opinion only.
Thanks for your long post here, Rneb. You made a lot of really good points. One that really resonates with me is the importance of us patients stepping back to assess where we are (in a holistic sense) now and then, and patting ourselves on the back for doing what we've needed to do.
Thanks for your long post here, Rneb. You made a lot of really good points. One that really resonates with me is the importance of us patients stepping back to assess where we are (in a holistic sense) now and then, and patting ourselves on the back for doing what we've needed to do.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Dealing with depression - any suggestions?
My father was diagnosed with multiple myeloma 4 months ago and it is already stage 3 B.
The first month went okayish, but the second was very bad. He suffered with anxiety disorder, confusion, behavioral complications, loss of appetite. Everything seemed to be going wrong.
And he is only 57.
As a caregiver, I can only tell you to tell her how good the medicines are, and she will be better. Make her think about things she would do after all this treatment gets over, and hide things which have to be hidden form her.
My dad is much better now. He eats well and doesn't think much about what will happen. It all came due to the confidence he has in the medicines and the doctor. And, mind you, I'm from India. You don't find so many myeloma specialists here.
Tell her stories of survival and how people do live with myeloma. It might help.
The first month went okayish, but the second was very bad. He suffered with anxiety disorder, confusion, behavioral complications, loss of appetite. Everything seemed to be going wrong.
And he is only 57.
As a caregiver, I can only tell you to tell her how good the medicines are, and she will be better. Make her think about things she would do after all this treatment gets over, and hide things which have to be hidden form her.
My dad is much better now. He eats well and doesn't think much about what will happen. It all came due to the confidence he has in the medicines and the doctor. And, mind you, I'm from India. You don't find so many myeloma specialists here.
Tell her stories of survival and how people do live with myeloma. It might help.
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shax
Re: Dealing with depression - any suggestions?
The doctor appointment went well and he has upped her anxiety meds and depression meds. She will continue with radiation. She says she doesn't want to stop and have to do it again. The doctor said she really shouldn't stop because he doesn't want her bones to become fragile and she has a lesion on her spine he is concerned about.
She has just kind of been zoned out the past two days. She has been complaining about some really bad pain in her back lately, specifically this week. My sister just texted me and said my mom urinated on herself at dinner and didn't even know it. My sister says it could be a side effect of external beam radiation (after 4?) or spinal cord compression? We will call her doctor tomorrow.
I hate this disease. It just strips every bit of dignity from a person. I hate it so much.
She has just kind of been zoned out the past two days. She has been complaining about some really bad pain in her back lately, specifically this week. My sister just texted me and said my mom urinated on herself at dinner and didn't even know it. My sister says it could be a side effect of external beam radiation (after 4?) or spinal cord compression? We will call her doctor tomorrow.
I hate this disease. It just strips every bit of dignity from a person. I hate it so much.
Re: Dealing with depression - any suggestions?
"I hate this disease. It just strips every bit of dignity from a person. I hate it so much."
Yep, it sure does...
Take care of yourself. Sleep ....is the Order of the Day, for you.
Good Luck.
Yep, it sure does...
Take care of yourself. Sleep ....is the Order of the Day, for you.
Good Luck.
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Rneb
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