[MaddzMom]

Re: Life expectancy once treatment ends?

by MaddzMom on Sun Oct 19, 2014 12:15 am

sandy57 wrote:

Sorry to hear about your mother. My mother passed away from multiple myeloma on August 3. She had stage III and had lesions on all her bones. She did some treat­ments, but it made her too weak. She decided to stop the chemo to get stronger. Even though she got stronger, she never got well enough to continue the treat­ments.

The oncologist talked to us about "quality of life" . My mother never got to go home, she was in a rehab. The oncologist told us that the multiple myeloma was sec­ond­ary and it would be other things that would finally kill her. He was right. Mom died from pneumonia, respiratory failure and kidney failure all due from the cancer ...

Oh I forget to mention, mom was 79 and lived about 3 months after the diagnosis."

My mother is going thru this now, she was diagnosed in early August, is having dialysis, the myeloma treatments have been stopped, she has already had pneumonia, UTI and extreme confusion, delusions and hallucinations, we have gotten her placed in a rehab and have just went from 'years to fight and survive to months, at most.

She is 73.

Thank you for sharing this post, I have been reading as much as I can to prepare for this, it is all just so much sooner than we thought....

[Dr. Peter Voorhees]

Re: Life expectancy once treatment ends?

by Dr. Peter Voorhees on Sun Oct 19, 2014 11:37 am

Dear OhioGirl,

Life expectancy is a bit hard for us to answer in the context of this forum. The answer would be impacted by the physical state your mother was in at the time the decision was made to enter hospice, the seriousness of the other medical conditions, lab results going into hospice (sodium and potassium levels, kidney function, etc), and the level of myeloma control at the current time.

If her myeloma was under good control and has not shown any signs of progression over the last few months, and her other medical conditions are not causing other significant health issues, she may do OK for longer than expected. If the myeloma was rapidly advancing recently, it may run its course more quickly.

I think your oncologist is in a better position to provide an estimate of time. If it has been a while since her myeloma status has been checked, and understanding the pace of the disease will help your mom and the rest of your family prepare better, it would not be unreasonable to take a look at her labs to see where things stand currently. This could help answer your question.

While the low dose dexamethasone will help with energy and pain, it likely will have no sig­nif­i­cant impact on the myeloma at that dose.

Best wishes to you and your family.

Kind regards,

Pete V.

[WorriedinOregon]

Re: Life expectancy once treatment ends?

by WorriedinOregon on Mon Oct 20, 2014 11:47 pm

My mother was diagnosed with myeloma in June 2009 at the age of 61. She has sought various treatments in various states but in June was taken off of treatment and advised to get hospice. Treatments were not working and her doctors felt her disease was resistant to treatment. While my stats on her disease are based on conversations with her (and she has really been in denial since diagnosis) I don't have a lot to go on as far as life expectancy. In June the cancer cells were 90%. I don't know about her potassium, but I do know she has high levels of calcium in her blood.

In September we moved her into our home, and she has almost daily hospice visits for a wide variety of needs. When she got here we were doubtful she would make it to Halloween, though it is her wish to make it to Thanksgiving. She eats a small meal per day and only drinks maybe a quart of liquid, mostly to take her morphine tablets. But in the last week or so she has improved greatly, with almost no breakthrough pain. She is awake most of the day and while she sometimes struggles to get out what she wants to say she is quite alert. Now I'm thinking she will be with us much longer than expected.

We are so happy that she is doing well, but it really plays with my emotions. I feel my life has been taken over with her needs and her disease, with my husband and children taking a backseat. (I have elementary school aged children). I wouldn't change this, but I have employment opportunities coming up that will take me out of the home. I don't want to send her to adult foster care, but she cannot be home alone for more than an hour or so. I can barely plan a grocery store run these days. Watching my mother slowly die is the most excruciating thing I've ever done. Every morning I open her bedroom door hoping she is still breathing.

Since she isn't under actual treatment, I don't know how her levels are doing, so I feel in the dark about what her body is up to. Is this rallying normal? She only gets out of bed for the bathroom so she is basically bedridden and watches TV all day. But we do have conversations and even talk about what is going to happen. She is scared and maybe this is rubbing off on me.

Sorry for the ramble, I guess I just needed to talk.

[Nancy Shamanna]

Re: Life expectancy once treatment ends?

by Nancy Shamanna on Tue Oct 21, 2014 8:37 am

Dear Worried,

Welcome to the forum and it's OK to vent! It sounds like you are having a very difficult time with caring for your Mom. At least you have the hospice visits to help and you do have your young family to care for too!

I was in a similar situation 25 years ago. My mother-in-law moved from India to stay with us, after my father-in-law passed away there. We had high hopes that she would be part of our family, but what we did not initially realize, and what got diagnosed too late, was that she had stomach cancer. Her last year was with us at home and she did pass away in hospital at the end. She was also in great pain and took morphine, which eventually depressed her nervous system to the point of her passing away.

In some ways it was my worst year, with two children aged 5 and 2, a 'rescue puppy' who was quite untrained, and then Gowri being very ill. People did rally around us, though, and sometimes we would get a break from it all, especially when my sister-in-law came to stay for a while. At least we could care for her at home, since she would have been totally lost in a care centre.

That being said though, I hope that you can get your mother to see a specialist, in case there is more they can do for her myeloma. Many of the chemotherapies are not that difficult to manage, can be in oral type and taken at home, without having to go to a cancer 'infusion' centre.

Hope that helps and best wishes to you and your family.

[OhioGirl]

Re: Life expectancy once treatment ends?

by OhioGirl on Tue Dec 30, 2014 11:47 pm

I just stumbled back upon this old post of mine and thought I would give an update. My mother is still alive, and I admit to being surprised by this. The doctors gave her 3 months when she stopped treatment in August, but obviously they were wrong. I can't help but think that her 1.5 rounds of chemo and radiation helped enough to buy her some more time.

That being said, I do think she is starting to head back downhill. Her pain levels have increased enough that this week they finally switched her from just Tylenol (acetaminophen / paracetamol) 3 times per day to oxycodone 3 times per day. She is continuing to lose weight (down about 40 lbs [18 kg] from a year ago) and has lost significant height. Since she is in hospice, we don't do bloodwork, so we really don't know how things are progressing, but my instinct says that her sodium levels are also dropping more, as her dementia has increased noticeably in the past month. However, she also has a UTI, so that could be having an effect.

She was just here with me in Pittsburgh for a week over Christmas and she spent almost the entire week in bed, getting up to go to the bathroom and eat in her room. She came down for Christmas morning but spent the entire time resting on the couch. She really didn't have a conversation with me the entire week, despite my attempts to engage her. She just isn't "there" anymore, which is so very sad.

On the upside, she doesn't seem to realize she is dying (and, more amusingly, she no longer freaks out when I dare to drive the speed limit of 70 mph on the turnpike!). Silver linings.

I'll do my best to come back and update in the coming months.

[mikeb]

Re: Life expectancy once treatment ends?

by mikeb on Wed Dec 31, 2014 10:53 am

Hi OhioGirl,

Thanks for the update. This must be a very rough time for you and your family. I'm glad that you got to spend time with your mother over Christmas, but it's too bad that she wasn't more "there."

Hang in there. We're thinking of you and wishing the best for you, your mother, and your family.

Mike

[Nancy Shamanna]

Re: Life expectancy once treatment ends?

by Nancy Shamanna on Wed Dec 31, 2014 11:02 am

Ohio Girl, I am sorry that your mother is going through all of this distress. It sounds good that she is being taken care of in a hospice though. Wishing you all the best as you move into the New Year also, and I am sure that your mother really appreciates all of the support you are giving to her.

[antelope1225]

Re: Life expectancy once treatment ends?

by antelope1225 on Thu Jan 01, 2015 2:09 pm

Dear WorriedinOregon.

I don't know if you are still trying to care for your mother in your home. I really hope for you and your family's sake that she is in hospice or a nursing home.

I know that might sound harsh - and I am sure she would rather be in your home, but, whew, I could not do it. My story might be completely unusual, but here it is:

My mother's health went downhill for years (she doesn't have multiple myeloma, she just has all sorts of other problems). I really think the 4 years of intensely knocking myself out to help my parents (after 30 years of being only daughter in town and gradually doing more and more for them) is part of why I got multiple myeloma. I worked full time, have 3 married young adult children and 5 grandchildren, and I was going up there EVERY day.

Once my daughter called when I was on my way up there and she said, "why are you going?" I said, "because they want me to" She said, "my kids want a lot of things they do not get".

I started trying to step back more and set more boundaries on my time. It was SO stressful and my mother finally went into a nursing home in 2011. I was diagnosed stage 3 multiple myeloma in spring 2012. My parents did not acknowledge my cancer for about a year. I was told NOT to tell my mother I even had cancer! I think it was because they wanted me to continue to care for them. When I got out of SCT, my Dad was continually urging me to go to nursing home to see my Mom. I went to see her about 3 months after my SCT and got 5 months of C. diff.

I am grateful for the cancer and C. diff because it has finally allowed me to set some firm boundaries with my parents! I go see my mother every week, but sit outside her window and talk to her on the cell phone. I still do a lot for my Dad, too, but I now I don't even try to meet his expectations.

So, do not think you have to be a martyr. You do not want to neglect your children, husband, and self in caring for your mother. I would not want my children to do it!

Cathy

[Annie103]

Re: Life expectancy once treatment ends?

by Annie103 on Sun Jun 21, 2015 8:46 pm

I'm new to this forum, Iv'e been reading and searching for several months about my mother's prognosis with her multiple myeloma.

Here is our story:
Mom is 73 years old. She has had multiple myeloma for 13 years. She had a SCT about 10 years ago and many chemo treatments over the years. Thalidomide, Velcade, Revlimid along with a kyphoplasty (sp) surgery to support her vertebrae and other bone strengthening therapies. She has had pneumonia many times but through all of this she has done very well and has lived alone.

In December (2014) her oncologist noticed an increase in her light chains and recommended treatments with Velcade again. The treatments hit her hard and she lost 35 pounds over the next two months and was in and out of the hospital 3 times in a period of two months having blood transfusions twice. The second transfusion did nothing to improve her status.

After a few days the doctor recommended she go in to a nursing home to regain strength. He has since stopped her treatments because she just was not able to tolerate them. She went to the nursing home in March of 2015 and remains there today (June 2015).

She has had 4 chronic UTI's and has not gained much in the way of strength. (She still can't go home alone.) She takes morphine and Percocet along with other pills and would be too overwhelmed t keep them straight although she did in the past.

My question is: when will this end? She wants to go home, but she can't do it herself. I can't stay with her, I work, have a family and have no other siblings or relatives that can help. Her oncologist doesn't think she will ever get strong enough to have chemo treatments again but has not told her that. Will she get strong enough? Is this nearing the end?

The nursing home people don't seem to know much about myeloma patients and are of little help. The oncologist also has not given me any idea of what to expect in the months or years (??) to come. She rarely leaves her chair and is often confused although not hugely.