Hi,
I really have had a difficult time joining this group, although I have been visiting the page very often.
The story: I was tired, I had night sweats. I was working, caring for a 87 year old mother, running a household – aren't we all "tired"?
I had a full annual physical in September, all was good. I went to the doctor in December, muscle pain in chest, pulled muscle. I returned in March with rib pain, had a blood test and MRI. BAM! I was diagnosed March 2016, stage III, high-risk multiple myeloma.
I completed 10 radiation visits on my spine for a lesion, which was pressing on my spinal cord. In addition, April - December I was aggressively treated with Velcade, dex, and Revlimid plus Zometa 14 days on, 14 off. (I do not remember how many rounds of the 14 days of Revlimid were administered). I am about to begin the Revlimid 21 days on, 7 days off " maintenance program".
I am in remission, but do not have Tp53, which I've been told is high risk for relapse. Last, I am waiting on a call to begin discussing transplant, which frightens me terribly!
2016, one tough year. Finalized a long pending divorce, lost my best fiend, my Mum, and found out this monster has invaded my body.
The "coming out ... sort of" statement is because I have chosen to keep this issue in my life private. I shared this diagnosis only with family and my best girlfriends. I didn't want to share such an ugly thing out in the community. I was worried about my job, my kids, the chatter, the sadness. The "awe" how are you when I walked into a room.
Is this odd? Here I am sharing my story to you!
This site has provided me more information than my oncology office! It helped me prepare my questions. The site assures me I am not alone in this battle.
Thank you. Mmmmmwa!
Forums
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Coming out ... sort of
Hopeful, I can't speak for all patients, but the feelings you describe wanting to keep the diagnosis "secret" is exactly how I felt early on as well. As time went by and I became more used to what was happening, I felt less afraid to share. Ultimately it will be your choice on how to deal with it and who you want to tell. In time, the treatments may make this more difficult, but for now you have that luxury.
I also certainly understand your fear of the transplant. I had mine in July 2016 and posted about my experience here in the forum in the thread "Mark's stem cell transplant adventure". Many others have posted their experiences as well. I think you might get some comfort reading these stories here. We all have different experiences, some harder than others, but I think as you get a more concrete and realistic idea about what a transplant looks like, it can be a bit less scary.
Good luck with your journey and welcome to the forums.
I also certainly understand your fear of the transplant. I had mine in July 2016 and posted about my experience here in the forum in the thread "Mark's stem cell transplant adventure". Many others have posted their experiences as well. I think you might get some comfort reading these stories here. We all have different experiences, some harder than others, but I think as you get a more concrete and realistic idea about what a transplant looks like, it can be a bit less scary.
Good luck with your journey and welcome to the forums.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Coming out ... sort of
Welcome to the forum, Hopeful1. As everyone here always says in these situations: "Sorry you have to be here, but you've found a really helpful and knowledgeable community."
I have been reading and posting here in the forum for many years. I can only second your statement about how much you can learn from what is posted here (and from what is published elsewhere at the Beacon). People don't believe it when I say it, but I learn something new about multiple myeloma almost every time I come here, and that's just about every day of every week.
Best wishes,
Cheryl
I have been reading and posting here in the forum for many years. I can only second your statement about how much you can learn from what is posted here (and from what is published elsewhere at the Beacon). People don't believe it when I say it, but I learn something new about multiple myeloma almost every time I come here, and that's just about every day of every week.
Best wishes,
Cheryl
Re: Coming out ... sort of
Thank you Cheryl. I already find comfort in reading the wealth of info on this site.
Mark, thank you! I did follow your brave journey with the transplant. Are you on maintenance therapy now? So glad you are doing well.
I begin Revlimid, 21 on, 7 off, 25 mg today.
I am just beginning to understand my treatment. I have just read enough to ask questions I do not find my doctor to be very informative if I do not ask. Great response April 2016 to December, Velcade, Revlimid, Zometa, and dex, then 5 weeks no treatment. 24-hour urine just sent off, and my kappa light is 11 (as of Monday) Doc just suggested I see specialists to discuss and begin test for transplant.
I am missing a TP53 gene which suppresses the tumors, which I believe makes me high risk. I was diagnosed at stage 3.
Trying hard to be brave and positive. Thanking all in advance for any suggestions, experiences and advice. I envy those with spouses and significant others to run things off or to count on to research; I have a wonderful support system of the dearest of friends, but no one educating themselves to aid in these large decisions. Single, 3 children in their 20's. Not sure my children understand the seriousness, not sure I want them to (at this time ... back to that not sharing all the ugly details!). Bad enough I have to worry and fight this. Must I drag my tribe thru this too?
Happy Friday. HUG
Mark, thank you! I did follow your brave journey with the transplant. Are you on maintenance therapy now? So glad you are doing well.
I begin Revlimid, 21 on, 7 off, 25 mg today.
I am just beginning to understand my treatment. I have just read enough to ask questions I do not find my doctor to be very informative if I do not ask. Great response April 2016 to December, Velcade, Revlimid, Zometa, and dex, then 5 weeks no treatment. 24-hour urine just sent off, and my kappa light is 11 (as of Monday) Doc just suggested I see specialists to discuss and begin test for transplant.
I am missing a TP53 gene which suppresses the tumors, which I believe makes me high risk. I was diagnosed at stage 3.
Trying hard to be brave and positive. Thanking all in advance for any suggestions, experiences and advice. I envy those with spouses and significant others to run things off or to count on to research; I have a wonderful support system of the dearest of friends, but no one educating themselves to aid in these large decisions. Single, 3 children in their 20's. Not sure my children understand the seriousness, not sure I want them to (at this time ... back to that not sharing all the ugly details!). Bad enough I have to worry and fight this. Must I drag my tribe thru this too?
Happy Friday. HUG
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Coming out ... sort of
Hopeful, I've been on maintenance since September, receiving a "half dose" of my initial treatment of Kyprolis, Pomalyst, and dexamethasone (KPD). It is working well so far and I will likely stay on this for some time. I have "high-risk" multiple myeloma and we are following an aggressive treatment course.
You will share your condition when you are ready, but you may be surprised at the support you will get from your kids and friends when they learn about the disease and what you are working through. Good luck, that support is what gets me through some tough days.
You will share your condition when you are ready, but you may be surprised at the support you will get from your kids and friends when they learn about the disease and what you are working through. Good luck, that support is what gets me through some tough days.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Coming out ... sort of
Thank you, Mark, for the positive words. I know you will continue to do well. Very appreciative of your support. Still on the fence.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Coming out ... sort of
Hopeful-
How much you reveal of your diagnosis to others other than your family and maybe your closest friends varies depending on your situation. I didn't tell anyone other than family and closest friends and my supervisor at work and a couple of my colleagues until I went for transplant. Then only a few more people learned of my diagnosis. I have since told others as it became necessary. I'm not closed about it. If someone asks me directly about what is going on with me, then I tell them.
If you haven't been treated by a multiple myeloma specialist, please get one on your treatment team. They are up to date on all of the latest drugs and clinical trials. This is very important as multiple myeloma is a long-haul disease for most of us. The specialist will work with your local oncologist if that is who is treating you now.
I had a stem cell transplant in 2010. It wasn't fun, but it wasn't as horrible as I thought it was going to be. In fact, it was kind of a non-event. Do your research and make your decision wisely.
All the best to you in 2017,
Nancy in Phila
How much you reveal of your diagnosis to others other than your family and maybe your closest friends varies depending on your situation. I didn't tell anyone other than family and closest friends and my supervisor at work and a couple of my colleagues until I went for transplant. Then only a few more people learned of my diagnosis. I have since told others as it became necessary. I'm not closed about it. If someone asks me directly about what is going on with me, then I tell them.
If you haven't been treated by a multiple myeloma specialist, please get one on your treatment team. They are up to date on all of the latest drugs and clinical trials. This is very important as multiple myeloma is a long-haul disease for most of us. The specialist will work with your local oncologist if that is who is treating you now.
I had a stem cell transplant in 2010. It wasn't fun, but it wasn't as horrible as I thought it was going to be. In fact, it was kind of a non-event. Do your research and make your decision wisely.
All the best to you in 2017,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Coming out ... sort of
Hi Nancy,
Thank you for your advice and support. I am waiting on an appointment with a myeloma specialist now. I am told I am in a chemical-induced remission. Thank you for the support of my (at this time) keeping the illness within my small trusted circle. I understand I may need to share more at some point, but for now, I am very comfortable keeping myeloma private.
I have learned more about multiple myeloma here than any other site. The members here share real experience and share in layman's terms, making it much easier for me to wrap my head around the details of long term care of the decease, quality of life and overall survival.
I was not provided a doctor,s name, but have been referred to Virginia Commonwealth University, which I was told has a couple of myeloma specialists. Waiting for a call to schedule an appointment.
Today I began the 21/7 Revlimid, dex each Saturday regimen. One day at a time. Blessings.
Thank you for your advice and support. I am waiting on an appointment with a myeloma specialist now. I am told I am in a chemical-induced remission. Thank you for the support of my (at this time) keeping the illness within my small trusted circle. I understand I may need to share more at some point, but for now, I am very comfortable keeping myeloma private.
I have learned more about multiple myeloma here than any other site. The members here share real experience and share in layman's terms, making it much easier for me to wrap my head around the details of long term care of the decease, quality of life and overall survival.
I was not provided a doctor,s name, but have been referred to Virginia Commonwealth University, which I was told has a couple of myeloma specialists. Waiting for a call to schedule an appointment.
Today I began the 21/7 Revlimid, dex each Saturday regimen. One day at a time. Blessings.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Coming out ... sort of
I think sharing is an individual issue. I spent some time getting used to it all, then shared. The outpouring I received was overwhelming, I received over 500 cards in three months during my transplant.
I wish you well In your journey.
I wish you well In your journey.
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Anonymous
Re: Coming out ... sort of
It was brave of you to tell us your story. I also had been through a lot of stress caring for my elderly mother, who was living at home alone and having numerous trips to hospital. Now I have had the heartbreak of putting her in a nursing home. Also working and babysitting.
I thought I would then have peace, but I found out I have smoldering myeloma and am high risk to go on to active.
I understand how you feel. One blow after another. Reach out, people care.
All the best,
Carol.
I thought I would then have peace, but I found out I have smoldering myeloma and am high risk to go on to active.
I understand how you feel. One blow after another. Reach out, people care.
All the best,
Carol.
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cazzamac - Name: cazzamac
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016.
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