My story is a long one. I was working in Qatar when I first exhibited symptoms of this disease. My jaw started to swell, and the dentists there thought it was an infection. I flew home back to the U.S. for a family funeral, and it swelled more. The ER doc performed a cat scan, and said it was either an infection or cancer and put me on a 10 day course of antibiotics. He told me to follow up with a CAT scan 2 weeks later.
I returned to the Middle East, and after seeing or being denied care by 5 different doctors, the last looked at my follow up scans and said he'd never seen anything like it before. I had what looked like holes in my jawbone, and my husband at the time and I were initially just glad that someone was trying to help. The next day I came to my senses, and flew to the UK to find a specialist. My insurance covered me there.
The docs in the UK were amazing. The oral maxillofacial surgeon I began with in April 2014 looked at the scans and right away said the tumor in my jaw looked like a plasmacytoma. He sent me in for labs, and a biopsy, and referred me to an multiple myeloma specialist. My husband started to lose his mind, and my mom flew to the UK for the final diagnosis. I'm so glad she did. We found out that I had five lesions, and the discovery sent me into a tailspin. My husband, whose temper was occasionally unbearable, became even more erratic, angry and demanding. Dealing with this disease and his emotional abuse was too much. I think he was incapable of facing the prospect of a wife with a terminal illness.
Luckily, I have an awesome family. I stayed in the UK, and while I started tests, and surgeries, I negotiated treatment and insurance options with my less than cooperative company. After a couple months of that, I flew back to the U.S. and was able to get Obamacare. I started the RVD regimen (6 rounds) with Zometa infusion at MD Anderson, and then transferred to U of PA for a stem cell transplant. I grappled with the idea of the transplant. But, in December, I went ahead with it. I have two children, not little anymore, and they depend on me. I need to stick around for them.
Before the transplant, I went from something like 67% plasma cells (I think I have that right) in my blood to remission. But since the transplant, I have struggled with neuropathy, high blood pressure, chemo brain, dizziness, blurry vision, anxiety and GI issues. I started working as an engineer again in April 2015, and my level of concentration and my skill sets have suffered. I'm not sure I'll be able to do this, as I feel good some days and bad most days. My confidence and determination has suffered, and I want them back. I want to be positive and say I can beat this, or at least have a quality life for as long as I can. The realization of my now-defunct marriage, the loss of my hair (so vain, I know) and the change to my freedom from worry over my health has taken quite a toll. I read these forums for information and inspiration. I hope to conquer this.
Forums
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: About Me
Hello, JinMingDao, and welcome to the forum.
The story of your diagnosis plays out like a mystery novel. I got more and more involved as I kept reading.
It would be an understatement to say that you've been through a lot. I'm incredibly impressed by the strength and fortitude that you've shown through it all. It's clear that you have a strong will -- you wouldn't be where you are right now without it -- and I'm certain that will help you tremendously in the years ahead.
The issues you've mentioned about concentration and "chemo brain" are, unfortunately, all too common. At this stage, it will be helpful to work with your doctor to find out what sort of treatment will strike the best balance between helping you in your fight against myeloma, and allowing you to live the sort of life you want to live.
And, yes, you'll find a lot of inspiration and useful here in the forum -- including the posting you just made earlier today.
Best wishes to you,
Cheryl
The story of your diagnosis plays out like a mystery novel. I got more and more involved as I kept reading.
It would be an understatement to say that you've been through a lot. I'm incredibly impressed by the strength and fortitude that you've shown through it all. It's clear that you have a strong will -- you wouldn't be where you are right now without it -- and I'm certain that will help you tremendously in the years ahead.
The issues you've mentioned about concentration and "chemo brain" are, unfortunately, all too common. At this stage, it will be helpful to work with your doctor to find out what sort of treatment will strike the best balance between helping you in your fight against myeloma, and allowing you to live the sort of life you want to live.
And, yes, you'll find a lot of inspiration and useful here in the forum -- including the posting you just made earlier today.
Best wishes to you,
Cheryl
Re: About Me
Thank you, Cheryl G, for your kind words of encouragement. I'm taking your advice to heart, and will try to focus on working with my docs to have the best life I can moving forward. I think the loss of my acumen may be temporary, and it's nice to know I can still write 
. You've made me glad I finally reached out on here. Best wishes to you and yours as well.
. You've made me glad I finally reached out on here. Best wishes to you and yours as well.-
JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: About Me
Sorry to hear that your experience with this disease has resulted in you having to deal with it single handed. My spouse has been very supportive and I can only imagine your worries about income and future plans now that you are single.
I was diagnosed 2 1/2 years ago and have had a stem cell transplant (SCT) that gave me a 1 1/2 year remission. Since then, I have had to restart on a chemo regimen. I too suffer from chemo brain. But I have the luxury of being on long term disability. I worked as an RN. My philosophy is, "no one has died of being stupid, but they have been responsible for other people's deaths", so going back to work at this time is not an option.
Is there a position of less responsibility that you could take on that would provide you with an income and the mental stimulation, where you could use your already existing knowledge and skill set, but at the same time be overseen by someone else?
As for the missing hair, wear makeup, even if you didn't before. And watch out – I ended up with twice as thick hair than I had before, and curly to boot.
.
I was diagnosed 2 1/2 years ago and have had a stem cell transplant (SCT) that gave me a 1 1/2 year remission. Since then, I have had to restart on a chemo regimen. I too suffer from chemo brain. But I have the luxury of being on long term disability. I worked as an RN. My philosophy is, "no one has died of being stupid, but they have been responsible for other people's deaths", so going back to work at this time is not an option.
Is there a position of less responsibility that you could take on that would provide you with an income and the mental stimulation, where you could use your already existing knowledge and skill set, but at the same time be overseen by someone else?
As for the missing hair, wear makeup, even if you didn't before. And watch out – I ended up with twice as thick hair than I had before, and curly to boot.
.
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deb b
Re: About Me
My goodness, what a journey! But I can see that you are a remarkably strong woman. I am so sorry you have had so many difficulties along the way.
My husband has had most of the same side effects that you mentioned after his stem cell transplant which was done in June of 2012. His most bothersome side effects are neuropathy in his legs and hands and of course, dealing with chemo brain. I never know when we get up in the morning if he will be clear headed or if chemo brain will present.
I am sorry to hear that you are having more bad days than good. I pray that you soon will see the good days start outnumbering the bad days. This has happened to my husband and even though he has relapsed, he seems quite content with his status. He was recently put on Pomalyst and is doing quite well. When that no longer works, perhaps one of the new drugs coming sown the pipeline will work for him.
We will be praying for you.
Sue and Earl
My husband has had most of the same side effects that you mentioned after his stem cell transplant which was done in June of 2012. His most bothersome side effects are neuropathy in his legs and hands and of course, dealing with chemo brain. I never know when we get up in the morning if he will be clear headed or if chemo brain will present.
I am sorry to hear that you are having more bad days than good. I pray that you soon will see the good days start outnumbering the bad days. This has happened to my husband and even though he has relapsed, he seems quite content with his status. He was recently put on Pomalyst and is doing quite well. When that no longer works, perhaps one of the new drugs coming sown the pipeline will work for him.
We will be praying for you.
Sue and Earl
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suearl - Name: Earl
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 79
Re: About Me
Sue, I am so glad that Pomalyst is working for your husband. I pray that his levels stay low and his side effects minimize. His residual effects from the SCT do seem to be similar to my own. I am striving to be more positive, but I am not there yet. Still working on it with my doctors' help. They are wonderful, and that is definitely a positive . Thank you for your kind words.
Deb, thank you for your kind words as well. At the moment, I am not sure I can go back to engineering, as a large part is complex problem-solving. It's difficult for me to explain my anxiety about making a mistake in design or on-site that could hurt someone. I understand what you're saying about a lesser role, and I'll have to think on that – that may be a solution. On a lighter note, my hair is back, and thicker, just like yours! Grateful that it came back, and I make sure I have earrings on. I will start to recognize myself in the mirror soon!
God bless you both, and stay well!
. Thank you for your kind words. Deb, thank you for your kind words as well. At the moment, I am not sure I can go back to engineering, as a large part is complex problem-solving. It's difficult for me to explain my anxiety about making a mistake in design or on-site that could hurt someone. I understand what you're saying about a lesser role, and I'll have to think on that – that may be a solution. On a lighter note, my hair is back, and thicker, just like yours! Grateful that it came back, and I make sure I have earrings on
. I will start to recognize myself in the mirror soon!God bless you both, and stay well!
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: About Me
It has been a while since I posted here. I got caught up in managing chemotherapy and staying positive, while I manage the financial, familial, and social issues I am sure we all share.
Medically, things are looking up. The multiple myeloma specialist switched me from the CyBorD regimen to Cytoxan, Kyprolis, and dexamethasone due to neuropathy concerns. I am happy to say that the numbness and pain have abated in my limbs and feet, and I am TOTALLY OFF gabapentin. Yea!
The steroids are a real issue for me. They take me high and low energy-wise, and I still combat GI issues. But, based on the fact that the fatigue is lessening over time, I think they are a necessary evil. My cancer-created HBP is lessening, and I think that is a result of cooking more at home, even when I don't feel 100%, trying to calm my mind, and taking the prescribed meds. God is good.
The family is my great support! While I try to do most myself, they check in all the time and step in when I need them to. I am blessed.
Tuesday was a bad day at the hospital, though. Since I have to get an IV for the Kyprolis infusion, and my veins collapse and twist and turn, it has historically been a challenge to get a working IV. I have chemo Tuesday and Wednesday every week for three weeks and have a week off, which I relish. This past Tuesday I went in for vitals and the IV, and I got the technician who has been getting better at doing the IVs since the first time when I was left sore and bruised. He was having a busy day, and after half an hour of hitting my arms, and three needles, I couldn't take any more pain. I said I needed to go to the bathroom, had a good cry, and then asked the waiting nurse if I could come in Wednesday and Thursday instead. She called the doc who said yes, and I left with my son, who drove.
I returned Wednesday with my mom, who was there for moral support and ready to step in if I needed a voice. It was strange. The technician I got was nervous, had two volunteers watching who never said a word, and got the IV in within five minutes and on the first try. Granted I drank twice as much water as the day before (3 large glasses versus 1.5 large glasses), but except for the uncomfortable 'elephant in the room feeling' it was fine. Until she mistook my mom's thank you as criticism (unreal), and we went back to my infusion cubicle.
I have never had so much attention. I lost count of how many nurses (and one doc, who I never talked to before) came to ask what happened. It went from comforting to bewildering to funny. I have to go back today for chemo and a bone marrow MRI. I hope they've all calmed down, so I can more easily focus on me and staying positive and calm. The bone marrow MRI is a challenge. Wish me luck! Godspeed all.
Medically, things are looking up. The multiple myeloma specialist switched me from the CyBorD regimen to Cytoxan, Kyprolis, and dexamethasone due to neuropathy concerns. I am happy to say that the numbness and pain have abated in my limbs and feet, and I am TOTALLY OFF gabapentin. Yea!
The steroids are a real issue for me. They take me high and low energy-wise, and I still combat GI issues. But, based on the fact that the fatigue is lessening over time, I think they are a necessary evil. My cancer-created HBP is lessening, and I think that is a result of cooking more at home, even when I don't feel 100%, trying to calm my mind, and taking the prescribed meds. God is good.
The family is my great support! While I try to do most myself, they check in all the time and step in when I need them to. I am blessed.
Tuesday was a bad day at the hospital, though. Since I have to get an IV for the Kyprolis infusion, and my veins collapse and twist and turn, it has historically been a challenge to get a working IV. I have chemo Tuesday and Wednesday every week for three weeks and have a week off, which I relish. This past Tuesday I went in for vitals and the IV, and I got the technician who has been getting better at doing the IVs since the first time when I was left sore and bruised. He was having a busy day, and after half an hour of hitting my arms, and three needles, I couldn't take any more pain. I said I needed to go to the bathroom, had a good cry, and then asked the waiting nurse if I could come in Wednesday and Thursday instead. She called the doc who said yes, and I left with my son, who drove.
I returned Wednesday with my mom, who was there for moral support and ready to step in if I needed a voice. It was strange. The technician I got was nervous, had two volunteers watching who never said a word, and got the IV in within five minutes and on the first try. Granted I drank twice as much water as the day before (3 large glasses versus 1.5 large glasses), but except for the uncomfortable 'elephant in the room feeling' it was fine. Until she mistook my mom's thank you as criticism (unreal), and we went back to my infusion cubicle.
I have never had so much attention. I lost count of how many nurses (and one doc, who I never talked to before) came to ask what happened. It went from comforting to bewildering to funny. I have to go back today for chemo and a bone marrow MRI. I hope they've all calmed down, so I can more easily focus on me and staying positive and calm. The bone marrow MRI is a challenge. Wish me luck! Godspeed all.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: About Me
It is good to hear from you. You seem to maintain a very positive attitude which is always welcome when myeloma is in ones life.
I too am on Kyprolis but as a maintenance so my infusions are twice a week every other week.
I will be having a PowerPort inserted under my skin, which needs to be done surgically (outpatient), but once it is in, the number of sticks will be minimal. If possible, you should look into this, as it may help the anxiety and stress from just finding a vein to start the infusion. Nothing worse then having bruises all over your arms.
I wish you much success in your treatment.
Rhonda
I too am on Kyprolis but as a maintenance so my infusions are twice a week every other week.
I will be having a PowerPort inserted under my skin, which needs to be done surgically (outpatient), but once it is in, the number of sticks will be minimal. If possible, you should look into this, as it may help the anxiety and stress from just finding a vein to start the infusion. Nothing worse then having bruises all over your arms.
I wish you much success in your treatment.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: About Me
Hello! I had six months of carfilzomib (Krypolis), Revlimid and dex. Two things:
When I learned I would need twice weekly IVs, I immediately asked for a port. I had it placed the next week. I've had it for a year now, and haven't had a regular IV placed or a vein blood draw for a year! It's all been done through the port. It's great, and I love it. At first, it was super sore. It took about two weeks to heal. Now, accessing the port is a tiny pinch, much better than an IV placement, and then... nothing. Plus my hands and arms are free to do things during infusions, like knit or type.
Krypolis can cause heart and lung damage (as can many chemotherapy agents), and my oncologist wonders if that's happening much more frequently than reported in the published data. So don't ignore symptoms of chest pain or shortness of breath. Fortunately, it seems to be reversible once you stop taking it, for the most part.
Good luck!
When I learned I would need twice weekly IVs, I immediately asked for a port. I had it placed the next week. I've had it for a year now, and haven't had a regular IV placed or a vein blood draw for a year! It's all been done through the port. It's great, and I love it. At first, it was super sore. It took about two weeks to heal. Now, accessing the port is a tiny pinch, much better than an IV placement, and then... nothing. Plus my hands and arms are free to do things during infusions, like knit or type.
Krypolis can cause heart and lung damage (as can many chemotherapy agents), and my oncologist wonders if that's happening much more frequently than reported in the published data. So don't ignore symptoms of chest pain or shortness of breath. Fortunately, it seems to be reversible once you stop taking it, for the most part.
Good luck!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: About Me
Hello Tracy and Rhonda! Thank you for your kind words of encouragement! They mean a lot, especially on those post-steroid nights. Tracy, thank you for the heads up on the Kyprolis side effects. I will certainly keep an eye on its effectiveness and impact on my body.
One question: I had a port with the failed stem cell transplant. How do you handle the shower taking and the possibility of infection? Are you simply covering it with plastic? I am hoping that next week we find that the marrow MRI reveals abatement of the cancer cells, but if not, I want the port, I think. I am truly fed up with the pain, and it seems the lesser of two evils.
God bless you both, and I hope you enjoy your coming spring!,
K
One question: I had a port with the failed stem cell transplant. How do you handle the shower taking and the possibility of infection? Are you simply covering it with plastic? I am hoping that next week we find that the marrow MRI reveals abatement of the cancer cells, but if not, I want the port, I think. I am truly fed up with the pain, and it seems the lesser of two evils.
God bless you both, and I hope you enjoy your coming spring!,
K
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
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