[blessthischick]

Life choices

by blessthischick on Tue Mar 18, 2014 5:57 pm

Hello guys

Wouldn't it be great to be told exact dates for progression? lol

My genetics are dire and so I feel my days before progression are precious for me. Is there anyone else on here who has dire genetics and is mgus/smoldering? What are your thoughts on continuing to work? I am seriously considering retiring. I don't feel I want to spend one more day in the stressful environment I work in, I want quality because it looks like I wont have quantity. Would love to hear anyone's thoughts on this.

Kay, trying to get my ducks in a row!

[Lizzie]

Re: Life choices

by Lizzie on Tue Mar 18, 2014 8:04 pm

Hi there! I've seen a few of your posts and wanted to send you some words of encouragement. I understand your concern about the cytogenetics; ironically, I have the same. There are, however, numerous opinions on the importance of 1q21 and t14;16 with respect to prognosis. Some models would classify you as "intermediate risk" .. see link below to latest discussion regarding risk ...

https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/#comments

I currently know of another woman who was SMM, has 4 out of 5 high-risk cytogenetics, and she achieved CR in a clinical trial for high risk SMM. She is doing great right now. Her goal is to remain in CR until more novel agents come out.

It seems the overall understanding of this disease is still evolving and new therapies are currently being investigated and will only increase the arsenal of products. Currently the 2 most concerning FISH results are 17p and p53; however, people are surviving longer even with those abnormalities. I just think it is a little too early for you to begin a "countdown". Investigate options and remain positive (which, as you know, is critical).

I'm so sorry that all of us are here ... it's terrible. I do think, though, that we need to remain realistically optimistic about options that are available to us. I hope this helps just a bit!

[Anonymous]

Re: Life choices

by Anonymous on Tue Mar 18, 2014 10:20 pm

Living with myeloma is like having a huge monkey on your back.

I'm in the "honeymoon" period of first remission after treatment, and to be honest I would actually not mind if my multiple myeloma would show some signs. Being told constantly that it always relapses, and then constantly waiting for it to show up, is very draining. On one hand I want to plan long term, on the other I'm waiting for multiple myeloma to come back. I don't know -- it sounds kind of crazy, but maybe other patients know what I'm talking about.

Every three months I get blood work and see the doctor and they say, you're still in remission, so then I get three more months until the next appointment, then all the stress waiting and wondering if this is going to be the month they tell me it's back.

[Glen with MM]

Re: Life choices

by Glen with MM on Wed Mar 19, 2014 12:43 am

Dear anonymous,

I understand what you mean by the waiting game and when will the other shoe fall again. I was diagnosed five years ago. Went through various chemo and had total stage V renal failure. I was 57 and think my two grown kids, my partner, and especially my love for a merciful God got me through the past 5 years.

I was on dialysis for 2 years and my kidneys got to 15 percent function and got off the machine. Yesterday I found out my myeloma has climbed again and it appears I am in store for chemo again and possibly my second bone marrow transplant. I did have an auto bone marrow transplant about two years in and it stopped the myeloma in it's tracks -- the transplant really worked well for me and good doctors and all the above mentioned has given me 5 years since I was told I had CANCER!

I put in in all caps because whatever anyone may tell you, it is a big deal and takes all of your energy, determination and faith that can be thrown at the monster within us.

I am sad, upset, mad, discouraged and yes... wait ... very hopeful. Why hopeful? Because I did it before and I can do whatever it takes again and so can you. I do not know your arsenal of weapons to fight this cancer but I can tell you mine briefly.

First, I believe in a loving and merciful God who heard my prayers and my thanking him for my healing at the same time I asked for his mercy. I do not believe we should ask God for his favor unless we believe he will answer and hear our prayers. I am only talking of me -- we are all different, but it helps me so much that I am not really afraid to die. I feel if I would die that I would be with Christ. So that takes the sting out of dying for me. But I love life too and think that is why we are all here -- to give meaning and love to others and have a good life.

I have two grandsons and want to see them grow and my son is getting married to a beautiful woman and I want to live to see him have babies. I have two doctors who in the past 5 years have taken the time to KNOW me. They know me as Glen, not a chart number or just a face. I thank God for them every night and my confidence in them and their abilities and attitudes is unstoppable! You must have doctors that you believe in and that they know what you want from them. I made it clear in the beginning to my doctors that I was going to beat this cancer. I was strong and determined and ready to fight . If they did not feel the same way , I did not want them on my team!

I may have rambled a it too much. If I have, forgive me. My eyes are full of tears as I think of your anxiety and fear. I do not mean this to be a sermon, but, for me and my tears, God has been and will always be my rock. I pray for us all in our journeys and ask a loving God for his mercy.

Love in Christ, Glen.

[NStewart]

Re: Life choices

by NStewart on Wed Mar 19, 2014 1:18 pm

One of the things that I have finally been able to do after 6 years since diagnosis, induction therapy, transplant, CR for 35 months, relapse and now treatment for 15 months is to make plans for the future. During the first 5 1/2 years I didn't feel like I could plan anything more than a month in advance because of what might happen with my myeloma.

A few months ago I began making long range plans for 2014 and felt really liberated. Do I still worry about possibly having problems with my myeloma? Yes! But, whatever happens will happen whether I stay home all of the time and worry or go out in the world and experience all that it has to offer. I decided to spread my wings again and live a full life.

One thing I did last year was to retire from my job. I loved what I did, but the environment that I was working in was toxic to my spirit. Everyone in my immediate work area was miserable and vocalized it often. I found myself getting caught up in it and knew that it wasn't a healthy place for me to be. So, fortunately, I was old enough to retire. If you can do it I highly recommend it.

Nancy in Phila

[barbara1200]

Re: Life choices

by barbara1200 on Tue Mar 25, 2014 9:29 pm

I have worked into my 70's but only part time but my day at work was long -- over 8 hours. I loved my job, but I was getting really tired by the end of the day.

After I was diagnosed with multiple myeloma, I decided to retire. It seems to me that it is counterproductive to go through treatment to get well & then work to the point of exhaustion each day. If it's possible for you to retire, I would highly recommend it. You can rest when you need it & as you progress, if you're better, you may be able to get a part time job that you enjoy and can only work a few hours a week.

[SusanMary]

Re: Life choices

by SusanMary on Thu May 01, 2014 1:51 am

Living with myeloma is like having a huge monkey on your back.

I'm in the "honeymoon" period of first remission after treatment, and to be honest I would actually not mind if my multiple myeloma would show some signs. Being told constantly that it always relapses, and then constantly waiting for it to show up, is very draining. On one hand I want to plan long term, on the other I'm waiting for multiple myeloma to come back. I don't know -- it sounds kind of crazy, but maybe other patients know what I'm talking about.

Every three months I get blood work and see the doctor and they say, you're still in remission, so then I get three more months until the next appointment, then all the stress waiting and wondering if this is going to be the month they tell me it's back.

Anonymous, I understand exactly what you are saying. I have had multiple myeloma for 18 years, my first CR being 8 1/2 years. I have always said I deal better with being relapsed than with being in remission, as when in remission I am always waiting for it to return.

A couple of years ago, I realised that having this attitude to my disease has caused me to waste a lot of time. Time I have spent avoiding life and being paralysed with fear. Not any more. I just decided that it was time to start having a life and to stop worrying about all of this (it's taken an awful long time for me to get to this point!).

Currently I am taking part in a clinical trial and have not yet achieved CR again. I have been on chemo of one sort or another since February 2013 and that was a tough year. But I know many people who have never been in CR and they live their life to the full. I have decided to do the same within the limits of my treatment.

It's all in how you look at it.

[KimT]

Re: Life choices

by KimT on Thu May 01, 2014 2:32 am

Anonymous, I get that too. I so understand what you are saying. I have amyloidosis and smoldering myeloma. I have not yet achieved CR. We are working on it. But I know that once I do, if I do, I will always just be waiting for it to come back. I will always be one test away from bad news.

And yet, I think I can live my life like this. I choose not to worry too much. I don't want to waste the time I have being miserable, so I try to lead a normal life. I have set goals on how I want the rest of my life to be like and how I want to be remembered. Yet I am hopeful.

I run a business that is not easy to walk away from, but I do plan to slow down on working. I spend a lot of time with friends and stay active. I used to joke that I would never retire. I'm 54 and now I'm afraid that will be true. But I am going to live every moment to the fullest.

[gardengirl]

Re: Life choices

by gardengirl on Thu May 22, 2014 2:54 pm

Who says you won't have quantity? With regards to leaving your stressful job, I feel that we have been given the opportunity for a reality check. Many, many, many people do not realize how precious life is. They go about their days on autopilot, and before they know it, years of unhappiness have passed.

It is time to live, live NOW, and if that means retiring from a job you don't like and doing what you want ... go for it! This is YOUR life. You have one chance at it ... make it the very best ever!!!

[mso]

Re: Life choices

by mso on Thu May 29, 2014 8:55 pm

I've been inCR for 19 months and live everyday doing what I like. I was very fortunate that I could retire early as I love to travel, hike and ride bicycles and that is exactly what I'm doing. For me physical activity is a big part of my life so I'm trying to get all those epic hikes and rides I put off done as I don't know when theMM will return. I don't spend time thinking about it and I do make plans. Life took on a new prespective when I was diagnosed. Keep moving is my philosophy and maybe it won't catch me

Life is short do it NOW!