My name is Dave and I was diagnosed with multiple myeloma on October 4th, 2016. To says I was shocked is an understatement.
I am 39 years old and in the best shape of my life. Even better than 20 years ago when I joined the Marine Corps. I have a wonderful wife and beautiful 5 year old boy. As a nurse, I already had myself diagnosed with a "tweaked" hip from all of my running and went to my orthopedic doctor to get it checked out. That's where the lesion on my hip was seen, and the follow-up MRI showed a second one on the other hip.
I'm still processing how this could happen, but I have made it my goal now to kick this disease in the butt and be around for a long long time.
Currently I am in my second cycle of treatment with Revlimid 25 mg, Velcade, and dexamethasone 20 mg. My one major side effect has been an overwhelming fatigue, and for someone who is so active, this is a hard pill to swallow. I am scheduled to meet with a myeloma specialist at Emory Winship Cancer Center at the end of the month to plan out my transplant. I have a lot of questions about it and don't want to research the wrong things.
I just started reading many of the posts here in the forum and it has given me hope and determination to fight as hard as possible.
Thank you all for your support!
Dave
Forums
Re: Dave, 39 years old and starting my journey
Dave-
I'm sorry you have reason to come here but am glad you are leveraging the Beacon. I honestly don't know what I would have done without it.
My 48-year old husband is the patient. Sounds like your induction treatments were the same. He, too, had a stem cell transplant in FL. You will find there are a variety of experiences with transplant. My husband's was pretty good, in terms of the transplant experience. Not much vomiting or incidences.
He is not high risk, was Stage III. He has had a very good partial responsen (VGPR). I think the transplant deepened his response. We are year past it and hoping he has a long remission.
There are so many good things happening in the world of treatments. I am very optimistic.
I'm sorry you have reason to come here but am glad you are leveraging the Beacon. I honestly don't know what I would have done without it.
My 48-year old husband is the patient. Sounds like your induction treatments were the same. He, too, had a stem cell transplant in FL. You will find there are a variety of experiences with transplant. My husband's was pretty good, in terms of the transplant experience. Not much vomiting or incidences.
He is not high risk, was Stage III. He has had a very good partial responsen (VGPR). I think the transplant deepened his response. We are year past it and hoping he has a long remission.
There are so many good things happening in the world of treatments. I am very optimistic.
Re: Dave, 39 years old and starting my journey
Irankin,
Thank you for shedding some light on some things.
I got some great news today, mid second cycle. My response has been great so far! My lambda free light chains went from 485 to 48 in a cycle and a half. I'll take that as good news.
We are planning on 6 total cycles and then an autologous stem cell transplant. I am ready to keep pushing forward despite the side effects! I am a hyper person who can't sit still for long, so the extreme fatigue has been harder than I thought
I want to do everything, but my body won't let me. It's a hard pill to swallow, but I know the end result will hopefully be remission. That makes whatever I feel worth it.
I'll be using this forum for support and to give support as well. I can't wait to get to know everyone here!
Dave
Thank you for shedding some light on some things.
I got some great news today, mid second cycle. My response has been great so far! My lambda free light chains went from 485 to 48 in a cycle and a half. I'll take that as good news.
We are planning on 6 total cycles and then an autologous stem cell transplant. I am ready to keep pushing forward despite the side effects! I am a hyper person who can't sit still for long, so the extreme fatigue has been harder than I thought
I want to do everything, but my body won't let me. It's a hard pill to swallow, but I know the end result will hopefully be remission. That makes whatever I feel worth it. I'll be using this forum for support and to give support as well. I can't wait to get to know everyone here!
Dave
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RNdave - Name: Dave F
- When were you/they diagnosed?: 10/2016
- Age at diagnosis: 39
Re: Dave, 39 years old and starting my journey
Hello Dave
Sorry to hear your news. I know exactly that feeling you're going through. I have two young daughters. It all takes time to get your head around the disease as it's very unique and everyone's myeloma is different.
Once you get through the treatment and get through the stem cell transplant, which I'm due to go through soon, then hopefully we can put it behind us for a long while. Also, there are lots of new treatments out there if and when needed.
All the best Dave. Keep us updated on how you're doing.
Regards,
Dean
Sorry to hear your news. I know exactly that feeling you're going through. I have two young daughters. It all takes time to get your head around the disease as it's very unique and everyone's myeloma is different.
Once you get through the treatment and get through the stem cell transplant, which I'm due to go through soon, then hopefully we can put it behind us for a long while. Also, there are lots of new treatments out there if and when needed.
All the best Dave. Keep us updated on how you're doing.
Regards,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dave, 39 years old and starting my journey
Hello Dave,
I am sorry for your news last month and I know how you feel. I was in the same situation as you are in now. My first two induction cycles caused me the same fatigue you are referencing. After the second cycle, my body started to adjust and my energy increased and I was able to do more and more during the cycles. Most of the side effects I had (and a number othere have) are related to the dexamethasone and the dex crash that happens after you take the dex.
One of the most important items to remember, especially with you being very active like I did before learning we had myeloma and started our therapy, is that try as much as you can to stay active, Walk, or get some exercise everyday, even if it is taking a small walk. The walk and exercise will provide large benefits as you head into your stem cell transplant. The more active you are before the stem cell transplant the more your body will be ready for it. I know sometimes this is not easy, but it is very important.
Best wishes as you go through your therapy!
I am sorry for your news last month and I know how you feel. I was in the same situation as you are in now. My first two induction cycles caused me the same fatigue you are referencing. After the second cycle, my body started to adjust and my energy increased and I was able to do more and more during the cycles. Most of the side effects I had (and a number othere have) are related to the dexamethasone and the dex crash that happens after you take the dex.
One of the most important items to remember, especially with you being very active like I did before learning we had myeloma and started our therapy, is that try as much as you can to stay active, Walk, or get some exercise everyday, even if it is taking a small walk. The walk and exercise will provide large benefits as you head into your stem cell transplant. The more active you are before the stem cell transplant the more your body will be ready for it. I know sometimes this is not easy, but it is very important.
Best wishes as you go through your therapy!
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Dave, 39 years old and starting my journey
Dave, you are right, this forum is a Godsend. Like you, I had had some hip pain which I blew off as muscle injury from playing soccer and never got it imaged. In May, my femur came completely unattached right below the trochanter – the multiple myeloma had eaten right through it. I was diagnosed in the hospital. I did the same induction regimen that you are doing. Like you, I wasn't prepared for the level of fatigue. I thought I would be able to continue working full time, but couldn't (and I sit on my butt at a desk all day). You will get about a 6 week reprieve between your induction therapy and your transplant, which will give you a glimpse back into your normal life.
I am in the middle of my stem cell transplant right now. I got my high-dose melphalan yesterday and get my stem cells back tomorrow. I waffled a little bit about whether to do the transplant now or put it off till relapse. A little pep talk by Mark11 on this forum convinced me to go ahead with the transplant. Sounds like you are young and otherwise healthy, those are great indicators. As you get closer to transplant, read the transplant threads by ACLinkBoca, Dogmom, and Mark Pouley. I have started my own transplant journal on here as well. I know that reading the transplant experiences of the others had me much more prepared for what to expect than a bunch of pamphlets from the Mayo Clinic!
Best of luck, brother, you'll be in our prayers as well.
I am in the middle of my stem cell transplant right now. I got my high-dose melphalan yesterday and get my stem cells back tomorrow. I waffled a little bit about whether to do the transplant now or put it off till relapse. A little pep talk by Mark11 on this forum convinced me to go ahead with the transplant. Sounds like you are young and otherwise healthy, those are great indicators. As you get closer to transplant, read the transplant threads by ACLinkBoca, Dogmom, and Mark Pouley. I have started my own transplant journal on here as well. I know that reading the transplant experiences of the others had me much more prepared for what to expect than a bunch of pamphlets from the Mayo Clinic!
Best of luck, brother, you'll be in our prayers as well.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Dave, 39 years old and starting my journey
I'm sorry to hear of your diagnosis, but I wanted to give you some hope that your great physical fitness, as well as your positive attitude, may aid you in this journey. My husband was also extremely athletic and strong his whole life, and that has really helped him persevere through various treatments. He can't work out like he used to, but he still makes a point of staying as active as he can, and it usually makes him feel better both mentally and physically.
We have a young child too, and they have a way of keeping a person on their toes! Of course there have been times when he was fatigued and anemic and very frustrated because, like you, he wants to be on the go, but he always pulled out the other side and got active again. It also makes the transplant doctors happy when someone arrives in a strong state ready to go.
Best of luck!
We have a young child too, and they have a way of keeping a person on their toes! Of course there have been times when he was fatigued and anemic and very frustrated because, like you, he wants to be on the go, but he always pulled out the other side and got active again. It also makes the transplant doctors happy when someone arrives in a strong state ready to go.
Best of luck!
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Dave, 39 years old and starting my journey
Hi Davem,
You are young and active, so getting a multiple myeloma diagnosis has to be a major shock to the system. I was a lot older than you when I was diagnosed in January 2015.
My oncologist and I are working on the assumption that I will not do a stem cell transplant, but we will see. I may be aged out. I just wanted to share my own experiences with Revlimid. The drug is usually very successful, but for me at that dose the side effects were too much to bear. I didn't enjoy the major edema, but it was the stomach issues and the extraordinary fatigue the did me in as well as shortness of breath and coughing.
My doctor and I agreed that the results were too troubling, not to mention the effect on my quality of life. Now I'm on daratumumab (Darzalex) and it is working well for me. Note that I also had Velcade and dex by themselves prior to the Revlimid and they worked well for more than a year. You will be able to get through the fatigue and the other symptoms for sure if they get you in a position to have a successful stem cell transplant.
All good wishes coming your way. I do believe that each of us has the ability to reach some accommodation with multiple myeloma for a long time. The best would be a complete remission, for sure, but my treatments and the level of attention paid to me by my fine physician, have kept me in the same posture as he found me – only anemia as my CRAB symptom, and a rapidly dropping lambda free light chain number, a close to normal IgA number, and a normal beta 2 number.
I wish you complete success and lots of time to have a good life with your family.
Babara
You are young and active, so getting a multiple myeloma diagnosis has to be a major shock to the system. I was a lot older than you when I was diagnosed in January 2015.
My oncologist and I are working on the assumption that I will not do a stem cell transplant, but we will see. I may be aged out. I just wanted to share my own experiences with Revlimid. The drug is usually very successful, but for me at that dose the side effects were too much to bear. I didn't enjoy the major edema, but it was the stomach issues and the extraordinary fatigue the did me in as well as shortness of breath and coughing.
My doctor and I agreed that the results were too troubling, not to mention the effect on my quality of life. Now I'm on daratumumab (Darzalex) and it is working well for me. Note that I also had Velcade and dex by themselves prior to the Revlimid and they worked well for more than a year. You will be able to get through the fatigue and the other symptoms for sure if they get you in a position to have a successful stem cell transplant.
All good wishes coming your way. I do believe that each of us has the ability to reach some accommodation with multiple myeloma for a long time. The best would be a complete remission, for sure, but my treatments and the level of attention paid to me by my fine physician, have kept me in the same posture as he found me – only anemia as my CRAB symptom, and a rapidly dropping lambda free light chain number, a close to normal IgA number, and a normal beta 2 number.
I wish you complete success and lots of time to have a good life with your family.
Babara
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barbaramh - Name: Barbara Hoffman
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 1/5/2015
- Age at diagnosis: 75
Re: Dave, 39 years old and starting my journey
Dave,
Hello from another young myeloma patient (at least, on behalf of my husband, who is 43 and was diagnosed in February – also completely unexpectedly and out of the blue when shoulder pain turned out to be a large plasmacytoma on a rib bone). I am happy to report that he achieved a stringent complete response (sCR) after 4 months of Kyprolis, Revlimid, and dexamethasone (KRD) earlier this year and then underwent a stem cell transplant inpatient in August. Now he still at sCR and certified minimal residual disease (MRD) negative, to boot!
Deep fatigue was his main issue, as he was still working pretty much full time, and we also have very young children. Most nights consisted of him resting through dinner, bath and bedtime for the kids, then dinner for him, then back to bed. But that's what it takes to get through it. I am hopeful that your response to induction will continue to be fantastic and you won't even need the full six months.
Probably like you, we exhaustively researched the question of early autologous stem cell transplant versus waiting. His specialist said he would be supportive of either route, and didn't pressure us, but basically, it came down to the fact that while we could roll the dice on the perchance and promise of curative drugs 10-15 years away, the present time was optimal to take an aggressive step that almost all major studies show would get him a longer remission and potentially longer overall survival.
We are concerned that he won't even see our children make it to high school; let alone marry, have grandchildren, etc. He is young, in good health otherwise, with excellent insurance presently that would cover virtually all the major costs of the transplant, and his employer was very supportive of his taking whatever time he needed. Too many of those factors will be out of our control 5 or 10 years down the road.
My husband's transplant was on August 1st and he started back part-time on Day 45, then full time on Day 60. The transplant wasn't a walk in the park; another poster here likened it to a bad week in Vegas, which was right!). He had the standard GI issues, nausea, loss of appetite, and discomfort for about 10 days. But by Day 16 or so he was on his way to recovery.
Now, after a full day of work, he says he has more energy than pre-cancer, and he jokes that his jeans fit much better. Everyone remarks that they cannot believe how fantastic he looks and he doesn't have anything like the wiped-out fatigue that he experience during induction therapy.
So, hang in there – it is only temporary and you are doing the best thing for you and your family.
Hello from another young myeloma patient (at least, on behalf of my husband, who is 43 and was diagnosed in February – also completely unexpectedly and out of the blue when shoulder pain turned out to be a large plasmacytoma on a rib bone). I am happy to report that he achieved a stringent complete response (sCR) after 4 months of Kyprolis, Revlimid, and dexamethasone (KRD) earlier this year and then underwent a stem cell transplant inpatient in August. Now he still at sCR and certified minimal residual disease (MRD) negative, to boot!
Deep fatigue was his main issue, as he was still working pretty much full time, and we also have very young children. Most nights consisted of him resting through dinner, bath and bedtime for the kids, then dinner for him, then back to bed. But that's what it takes to get through it. I am hopeful that your response to induction will continue to be fantastic and you won't even need the full six months.
Probably like you, we exhaustively researched the question of early autologous stem cell transplant versus waiting. His specialist said he would be supportive of either route, and didn't pressure us, but basically, it came down to the fact that while we could roll the dice on the perchance and promise of curative drugs 10-15 years away, the present time was optimal to take an aggressive step that almost all major studies show would get him a longer remission and potentially longer overall survival.
We are concerned that he won't even see our children make it to high school; let alone marry, have grandchildren, etc. He is young, in good health otherwise, with excellent insurance presently that would cover virtually all the major costs of the transplant, and his employer was very supportive of his taking whatever time he needed. Too many of those factors will be out of our control 5 or 10 years down the road.
My husband's transplant was on August 1st and he started back part-time on Day 45, then full time on Day 60. The transplant wasn't a walk in the park; another poster here likened it to a bad week in Vegas, which was right!). He had the standard GI issues, nausea, loss of appetite, and discomfort for about 10 days. But by Day 16 or so he was on his way to recovery.
Now, after a full day of work, he says he has more energy than pre-cancer, and he jokes that his jeans fit much better. Everyone remarks that they cannot believe how fantastic he looks and he doesn't have anything like the wiped-out fatigue that he experience during induction therapy.
So, hang in there – it is only temporary and you are doing the best thing for you and your family.
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Dave, 39 years old and starting my journey
Hi Dave,
I'm sorry to hear of your diagnosis, it is indeed a difficult time for you. From the shock of diagnosis and coming to terms with the ramifications, to getting your head around all the medical jargon, it is a challenge to say the least.
My own experience is not dissimilar to yours, although I was considerably older than you at diagnosis (52) in March of last year. I was very active and relatively fit at the time and as a result my symptoms of recurrent infections and back pain were initially misdiagnosed by my GP.
A regimen of cyclophosphamide, Velcade, and dexamethasone (CyborD) and then of Velcade (bortezomib), thalidomide, and dexamethasone reduced my paraprotein level from 73 g/l (7.3 g/dl) at diagnosis to 13 g/l (1.3 g/dl) prior to an autologous stem cell transplant in September 2015. The transplant was successful in reducing the paraprotein level to 3 g/l (0.3 g/dl) and now 14 months on I am considered to be in a very good partial remission (VGPR) with paraprotein level less than 1 g/l (0.1 g/dl) and feeling less fatigued and stronger.
I wish you well for your transplant as it is a daunting prospect and will take some time to recover from, but in my experience a very worthwhile process.
Brendan
I'm sorry to hear of your diagnosis, it is indeed a difficult time for you. From the shock of diagnosis and coming to terms with the ramifications, to getting your head around all the medical jargon, it is a challenge to say the least.
My own experience is not dissimilar to yours, although I was considerably older than you at diagnosis (52) in March of last year. I was very active and relatively fit at the time and as a result my symptoms of recurrent infections and back pain were initially misdiagnosed by my GP.
A regimen of cyclophosphamide, Velcade, and dexamethasone (CyborD) and then of Velcade (bortezomib), thalidomide, and dexamethasone reduced my paraprotein level from 73 g/l (7.3 g/dl) at diagnosis to 13 g/l (1.3 g/dl) prior to an autologous stem cell transplant in September 2015. The transplant was successful in reducing the paraprotein level to 3 g/l (0.3 g/dl) and now 14 months on I am considered to be in a very good partial remission (VGPR) with paraprotein level less than 1 g/l (0.1 g/dl) and feeling less fatigued and stronger.
I wish you well for your transplant as it is a daunting prospect and will take some time to recover from, but in my experience a very worthwhile process.
Brendan
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Brendan
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