Good day from sunny Tampa.
My story seems typical, you do not know what you have until it jumps ups and bites you in the ___ (insert body part here). For me it was the T8 vertebrae. In 2013, I began experiencing back pain that would not go away. Since I was only 58 (born in 1955) at the time and still very active in soccer and golf, I attributed it to not stretching. For the bulk of 2013 and first six months of 2013, I tried yoga, stretching , solon patches, acupuncture, and massages to relieve the pain, alas to no avail.
One might say, why not go see a doctor? I did, and each time I was given muscle relaxants or some other useless information. So I lived with the ever increasing pain until it prevented me from doing anything other than lying face down in bed. At that time, I went to the emergency room and was informed that my pain was caused by the absence of my T8 vertebrae. Why it decided to leave was a mystery, but a bit of kyphoplasty (which was ineffective), then the insertion of metal spacer, two rods, and eight screws, my pain went away. In the meantime the news we were all waiting to hear, "You have CANCER", even better it is rare and so far no cure has been found. Oh by the by, let's give it a fancy name, MULTIPLE MYELOMA.
The rest of 2013 was spent learning to walk again. Start the Revlimid, Velcade, and dexamethasone (RVD) regimen, and radiation. Thru six RVD cycles, radiation, and Zometa, we get to the best part of it all. The autologous transplant. So I end 2013 harvesting bone marrow, and start the new year getting them back. The litany of drugs from the transplant were many, but the best was melphalan. A few weeks in isolation and sickness and six more weeks out of work, and I was back, at least in the office.
Since then, other being in constant pain from the back surgery, I am back trying to live a normal life. I started refereeing soccer once again and doing something on the golf course that resembles golf. So after a year since my new birthday, I seem to catch every cold around, sometimes even a fever, and now I worry about every ache and pain. Could it be back? Complicating it all is the numbers are not in line with what the doctors want to see. My transplant specialist wants to do another transplant, and the drug doctor says more drugs. Living a year drug-free has been nice, but I fear it is about to end
I keep smiling and living, since that is all I can do. I hope to be here for my newly born grandchildren until they graduate from college, but that is a pipe dream. But goals are a nice thing to have. Thank you for your time.
Jimmy V says 'Never give up"
Forums
9 posts
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Jfosntampa - Name: John Foster
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 58
Re: My myeloma story - John from Tampa
Welcome to the forum John!
Glad to see you finally got diagnosed. I unfortunately read of too many stories on this forum where folks suffer for quite some time before they get a correct diagnosis.
Glad to see you finally got diagnosed. I unfortunately read of too many stories on this forum where folks suffer for quite some time before they get a correct diagnosis.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My myeloma story - John from Tampa
I'm sorry that you have to find yourself here, John, but you've found a very supportive and knowledgeable community here. Welcome!
If you have questions we can help you with, don't hesitate to ask. Also, don't hesitate to share any tips or experiences you have that may be helpful to others. There is no rule against newcomers sharing their "lessons learned"!
If you have questions we can help you with, don't hesitate to ask. Also, don't hesitate to share any tips or experiences you have that may be helpful to others. There is no rule against newcomers sharing their "lessons learned"!
Re: My myeloma story - John from Tampa
John, sorry that you have found yourself here, but you are most welcome and should find this a very supportive space. I am glad to see that you have not lost your sense of humor – it's a valuable asset on your myeloma journey.
Cathy
Cathy
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: My myeloma story - John from Tampa
Welcome to the Beacon, John. As you have probably read, your lengthy time to diagnosis is not unusual. My husband broke a rib opening a bottle of wine and the doctors gave it no regard. It was not until he could not walk up our front steps that the emergency room personnel determined that something serious was wrong.
I believe my husband owes his life to the ER nurse, Dennis, who ran lots of tests and then sent him from our small town in southern New Mexico up to the Presbyterian Hospital three hours away in Albuquerque. Even they could not give us a definitive diagnosis - we ended up spending nearly a year at MD Anderson in Houston, where he went through induction chemotherapy with Revlimid, panobinostat, Velcade and dexamethasone.
Later he had radiation therapy to eliminate two plasmacytomas on his spine, and then he went through his stem cell transplant. He is 7 months post transplant and doing well. He is now on Revlimid, Empliciti (elotuzumab) and dexamethasone for his maintenance chemotherapy. Why? His myeloma is extremely rare and he had extramedullary involvement of the stomach (also rare).
The myeloma journey is a tough one, but there are lots of people out there willing to help, to share their own stories, and to give encouragement to one another. I do not know where we would be without the Beacon. Through their contributors and resources, many of our questions have been answered.
You mentioned that you have experienced some illnesses. We have become quite germophobic. We wear masks on the plane and in crowded public places. We use disinfectant wipes on the plane, in restaurants, and in public waiting rooms. We do not know for sure, but we cannot help believe this has kept the common cold and the flu at bay.
Again, welcome to the Beacon.
I believe my husband owes his life to the ER nurse, Dennis, who ran lots of tests and then sent him from our small town in southern New Mexico up to the Presbyterian Hospital three hours away in Albuquerque. Even they could not give us a definitive diagnosis - we ended up spending nearly a year at MD Anderson in Houston, where he went through induction chemotherapy with Revlimid, panobinostat, Velcade and dexamethasone.
Later he had radiation therapy to eliminate two plasmacytomas on his spine, and then he went through his stem cell transplant. He is 7 months post transplant and doing well. He is now on Revlimid, Empliciti (elotuzumab) and dexamethasone for his maintenance chemotherapy. Why? His myeloma is extremely rare and he had extramedullary involvement of the stomach (also rare).
The myeloma journey is a tough one, but there are lots of people out there willing to help, to share their own stories, and to give encouragement to one another. I do not know where we would be without the Beacon. Through their contributors and resources, many of our questions have been answered.
You mentioned that you have experienced some illnesses. We have become quite germophobic. We wear masks on the plane and in crowded public places. We use disinfectant wipes on the plane, in restaurants, and in public waiting rooms. We do not know for sure, but we cannot help believe this has kept the common cold and the flu at bay.
Again, welcome to the Beacon.
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: My myeloma story - John from Tampa
Thanks for sharing your journey. We have only recently found the Beacon. It has been great to have other input from people who understand the journey. It certainly has changed our lives. Suddenly my husband went from being a well man, working hard, to being dependent on drugs. Without them, he would not live very long at all.
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Dideoh - Name: Dianne
- Who do you know with myeloma?: my spouse
- When were you/they diagnosed?: july 2015
- Age at diagnosis: 63
Re: My myeloma story - John from Tampa
John,
Glad you have gotten answers for your pain, but sorry it had to be multiple myeloma. I read your story with interest because we are the same age and I too live near Tampa. I also dream of seeing my grandchildren graduating from college. I have a question about your treatment. Are you going to Moffitt?
Debi
Glad you have gotten answers for your pain, but sorry it had to be multiple myeloma. I read your story with interest because we are the same age and I too live near Tampa. I also dream of seeing my grandchildren graduating from college. I have a question about your treatment. Are you going to Moffitt?
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: My myeloma story - John from Tampa
Thank you all that have replied, and your kind thoughts. It has been a long journey, that I hope keeps on going. Yes I am going to Moffitt, but I will tell you that some of my best advice came from a blunt talking oncologist that has left private practice to go work for an hospital.
Dr. B. asked me what I was hoping for after a "failed" transplant. The disease was not put to sleep and continuing an aggressive treatment plan posed the same threat as the disease. Until myeloma takes over your life, remember, one can die from the cure just as easily as the disease. So over the past year and a half, I have been chemo free but not myeloma free.
My decision came after a lot of soul searching and weighing the information and opinion of the Moffitt doctors and Dr. B. I am happy that I choose this path, I will take "normalcy" as long as I can.
I did mention a "failed transplant", it was not a failure as much as not quite as successful as Moffitt would have liked. Ever increasing levels of IgG , kappa light chains, and other markers going south. But to me a failure would of been death, and since I am writing this, it is not a failure.
Dr. B. asked me what I was hoping for after a "failed" transplant. The disease was not put to sleep and continuing an aggressive treatment plan posed the same threat as the disease. Until myeloma takes over your life, remember, one can die from the cure just as easily as the disease. So over the past year and a half, I have been chemo free but not myeloma free.
My decision came after a lot of soul searching and weighing the information and opinion of the Moffitt doctors and Dr. B. I am happy that I choose this path, I will take "normalcy" as long as I can.
I did mention a "failed transplant", it was not a failure as much as not quite as successful as Moffitt would have liked. Ever increasing levels of IgG , kappa light chains, and other markers going south. But to me a failure would of been death, and since I am writing this, it is not a failure.
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Jfosntampa - Name: John Foster
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 58
Re: My myeloma story - John from Tampa
Hello John,
You may well be on top of all of the latest news better than myself, however, I thought I would chime in with a point or two.
I just happened to ask at my wife's most recent appointment how daratumumab (Darzalex) and elotuzumab (Empliciti) were doing (they are off trial now, but only 3 or 4 months). I heard from one of the doctors that daratumumab is being used much more heavily than elotuzumab. In almost any case that they use it, it seems to get at least a decent response, and in some cases a "remarkable" response (this doctor did not tend to use that word frequently).
In your case, you advise that you are still fairly active and in decent shape. I understand that the patients who are still in decent shape tolerate it well (less so for the frail patients in poor shape). Right now it's a long infusion, but eventually it goes down to only once per month. Maybe it's worth a look in your case.
I've also heard that Keytruda (pembrolizumab) is another monoclonal antibody that some doctors are very high on.
Good luck.
You may well be on top of all of the latest news better than myself, however, I thought I would chime in with a point or two.
I just happened to ask at my wife's most recent appointment how daratumumab (Darzalex) and elotuzumab (Empliciti) were doing (they are off trial now, but only 3 or 4 months). I heard from one of the doctors that daratumumab is being used much more heavily than elotuzumab. In almost any case that they use it, it seems to get at least a decent response, and in some cases a "remarkable" response (this doctor did not tend to use that word frequently).
In your case, you advise that you are still fairly active and in decent shape. I understand that the patients who are still in decent shape tolerate it well (less so for the frail patients in poor shape). Right now it's a long infusion, but eventually it goes down to only once per month. Maybe it's worth a look in your case.
I've also heard that Keytruda (pembrolizumab) is another monoclonal antibody that some doctors are very high on.
Good luck.
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JPC - Name: JPC
9 posts
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