Can someone answer a few questions for me regarding the development of muliple (many, many and growing) soft tissue plasmacytomas on my husband's upper body. They are covering his upper torso, arms and now face and neck. He said many are painful and some itch. He is on VCD 3 weeks on, one week off cycles right now. He has had over the past 8 years 2 stem cell transplants, multiple surgeries to remove infected and collapsed bones...arm, hip, spine. He has undergone several rounds of radiation on his spine to relieve compression but these new "bumps" have me baffled. The VCD doesn't seem to be touching it. Lately, he has become very short of breath and spent 5 days hospitalized while they ran a barrage of tests. They found no definitive reason for the shortness and sent him home with oxygen and an inhaler. These help a little but he still periodically becomes very short. I think it is the plasmacytomas pressing on his lungs but nothing showed up in any of the scans.
Does the development of these soft tissue plasmacytomas indicate his disease is rapidly progressing? There are way too many to incise or radiate at this point.
Thank you for any help offered.
Eva
Forums
-
diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Multiple plasmacytomas in the skin
Hello Eva ... and welcome to the Beacon's discussion forum.
We're very sorry to hear about the issues your husband is having with soft tissue plasmacytomas. As you probably know, these are often called "extramedullary" manifestations of your husband's myeloma. Thus, you'll also here them described as "extramedullary disease" or "extramedullary myeloma."
I think many of your questions about what is happening with your husband are addressed in this article that was recently published here at The Beacon:
https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/
Please be sure to check out the reader comments accompanying the article,since there is some helpful discussion there as well.
Good luck!
The Myeloma Beacon Team
We're very sorry to hear about the issues your husband is having with soft tissue plasmacytomas. As you probably know, these are often called "extramedullary" manifestations of your husband's myeloma. Thus, you'll also here them described as "extramedullary disease" or "extramedullary myeloma."
I think many of your questions about what is happening with your husband are addressed in this article that was recently published here at The Beacon:
https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/
Please be sure to check out the reader comments accompanying the article,since there is some helpful discussion there as well.
Good luck!
The Myeloma Beacon Team
Re: Multiple plasmacytomas in the skin
Thank you...the article is pretty much what I have been searching the web for. I want to know if it is indicative of a more agressive disease. The article does indicate this is so. I want to know if it should be treated. The artcle really leaves it up to various indicators. Since my husband's disease is so wide-spread across his torso, limbs, neck and face I don't believe radiation or surgery would be in order. He has already undergone 2 stem cell transplants so that treatment is also not a possibility as there is no indication that additional transplants would be of any added benefit. Therefore, additional drug therapies must be the only treatment available to him. I didn't get from the article what his survival chances might be in view of the fact that he has developed this extramedullary disease after relapse indicating a more agressive development of his overall multiple myeloma diseasse. This is a question I desperately want answered.
Warmest regards,
Eva
Warmest regards,
Eva
-
diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Multiple plasmacytomas in the skin
I am sorry to hear that your husband is suffering from such a significant presentation of extramedullary disease.
As you have already stated, and researched, this is a sign of aggressive disease. You are also correct in stating that surgery and radiation are unlikely to be of much benefit unless there are specific lesions that are causing symptoms. Those can be focally radiated.
The answer is systemic chemotherapy. You said your husband is receiving CVD. It does not appear, based on your comments, to be being very successful at this time. To this end, it may be important to change to an alternate therapy.
Without knowing your husband's treatment history, I don;t know what might be best. However, there may be other choices for systemic therapy. Revlimid therapy, additional Velcade-based combinations, Treanda (bendamustine) is another potential base chemotherapy.
It may also make sense to be referred to a center of excellence to be seen by a myeloma specialist. There may be clinical trials available that you and your husband may be eligible to enroll in. These therapies may include "next generation" IMIDs or proteosome inhibitors, like pomalidomide or carfilzomib.
I hope that this helps and please keep us updated on your progress.
As you have already stated, and researched, this is a sign of aggressive disease. You are also correct in stating that surgery and radiation are unlikely to be of much benefit unless there are specific lesions that are causing symptoms. Those can be focally radiated.
The answer is systemic chemotherapy. You said your husband is receiving CVD. It does not appear, based on your comments, to be being very successful at this time. To this end, it may be important to change to an alternate therapy.
Without knowing your husband's treatment history, I don;t know what might be best. However, there may be other choices for systemic therapy. Revlimid therapy, additional Velcade-based combinations, Treanda (bendamustine) is another potential base chemotherapy.
It may also make sense to be referred to a center of excellence to be seen by a myeloma specialist. There may be clinical trials available that you and your husband may be eligible to enroll in. These therapies may include "next generation" IMIDs or proteosome inhibitors, like pomalidomide or carfilzomib.
I hope that this helps and please keep us updated on your progress.
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Multiple plasmacytomas in the skin
Thank you Dr. Shain:
I understand the treatment options better today after having met with his clinic yesterday but I still ask the questions:
I didn't get from the article what his survival chances might be in view of the fact that he has developed this extramedullary disease after relapse indicating a more agressive development of his overall multiple myeloma diseasse. This is a question I desperately want answered.
We are patients of a premier center and I trust we will get the best available treatments at Emory Winship under the direction of Dr. Lionel Sagar. They have suggested admission to the Emory University Hospital next Tuesday to begin a regimine of chemo and possibly follow it up with a third stem cell transplant.
I still didn't get what the chances, percentages, are. What are his odds?
Thank you,
Eva
I understand the treatment options better today after having met with his clinic yesterday but I still ask the questions:
I didn't get from the article what his survival chances might be in view of the fact that he has developed this extramedullary disease after relapse indicating a more agressive development of his overall multiple myeloma diseasse. This is a question I desperately want answered.
We are patients of a premier center and I trust we will get the best available treatments at Emory Winship under the direction of Dr. Lionel Sagar. They have suggested admission to the Emory University Hospital next Tuesday to begin a regimine of chemo and possibly follow it up with a third stem cell transplant.
I still didn't get what the chances, percentages, are. What are his odds?
Thank you,
Eva
-
diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Multiple plasmacytomas in the skin
First, I am glad to hear that your husband is being treated by Dr Lonial, he is an excellent myeloma physician. I am guessing that your husband is being admitted for an infusional therapy (CVAD, DCEP, VTD-PACE or a trial at Emory). Unfortunately, I cannot answer odds and percentages any better than Dr. Lonial, because this situation rare and not studied in trials that allow us to give odds on populations of patients receiving treatment x or y.
As I stated previously, the numerous extremedullary sites of disease are concerning and suggest that your husbands disease is going to be difficult to control for long periods of time. You are in situation where Dr. Lonial wants to get a response to see if a thrid transplant might be possible. But the first step is to be admitted and recieve therapy. Then we can assess response by a reduction in the lesions. Unfortunately, sometimes we cannot give odds or percentages.
I try and tell my patients that having myeloma is a balance of hope and reality. HOPE: We have an excellent number of therapies and can control disease for large number of people for a long time. Reality: however, myeloma remains a mortal disease. I think that your should hold on to HOPE, but the reality is that your husbands disease has reached a point that it is going to be difficult to control. Our HOPE is that your husbands's disease remains sensitive to therapy. Our HOPE is that we can control this for some time. Reality, however, is not always what we hope and only time will answer that question.
Hope and reality. Let us see how Dr. Lonial's therapy works taking one cycle, one day at time.
We are hoping that your husband does well.
As I stated previously, the numerous extremedullary sites of disease are concerning and suggest that your husbands disease is going to be difficult to control for long periods of time. You are in situation where Dr. Lonial wants to get a response to see if a thrid transplant might be possible. But the first step is to be admitted and recieve therapy. Then we can assess response by a reduction in the lesions. Unfortunately, sometimes we cannot give odds or percentages.
I try and tell my patients that having myeloma is a balance of hope and reality. HOPE: We have an excellent number of therapies and can control disease for large number of people for a long time. Reality: however, myeloma remains a mortal disease. I think that your should hold on to HOPE, but the reality is that your husbands disease has reached a point that it is going to be difficult to control. Our HOPE is that your husbands's disease remains sensitive to therapy. Our HOPE is that we can control this for some time. Reality, however, is not always what we hope and only time will answer that question.
Hope and reality. Let us see how Dr. Lonial's therapy works taking one cycle, one day at time.
We are hoping that your husband does well.
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Multiple plasmacytomas in the skin
Dear Eva,
my partner in summer had the same problems with lots of extramedullary plasmocytomas. Also at his breast, head, around his left eye, he saw everything double.
Our doctors could not give much hope, but then he got the chance to take part in the pomalidomide trial - and after ONE WEEK, really only one week, all of the plasmocytomas were completely gone.
Since then he takes the pomalidomide and except of some infections, he is doing really well. His life is so, that you can call it one.
Maybe it would be also a possibility for your husband to get into such a pomalidomide trial.
Wish you the very best
Caro
my partner in summer had the same problems with lots of extramedullary plasmocytomas. Also at his breast, head, around his left eye, he saw everything double.
Our doctors could not give much hope, but then he got the chance to take part in the pomalidomide trial - and after ONE WEEK, really only one week, all of the plasmocytomas were completely gone.
Since then he takes the pomalidomide and except of some infections, he is doing really well. His life is so, that you can call it one.
Maybe it would be also a possibility for your husband to get into such a pomalidomide trial.
Wish you the very best
Caro
-
Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Multiple plasmacytomas in the skin
Dear Caro:
That is good news about your partner. I'm not sure I want anything else to work at this point...I hate to say but my husband has been through so much! He looks horrible and is in pain all the time. His doctors did discuss putting him in the pomalidomide trial but decided his disease appeared to be so agressive they didn't want to risk the 3 week de-tox to get all the chemo drugs out of his system. They wanted to start him on a new process immediately. He has the "bumps" all over his upper body--torso, arms, head and face! They are absolutely everwhere. Some are quite large and most are very painful. Several have turned deep purple and they say that is because they have become "vascular"....I admitted him to Emory yesterday and they immediately started him on 4 cycles of a chemo mixture. He will be on the IV 22 hours on, 2 hours off then start the next cycle of 22 on, 2 off...through 4 cycles. The drugs are a cytoxin type drug, a Velcade type drug and a couple others thrown in for good measure.
I'm curious about one statement in your reply. You said " His life is so, that you can call it one." Do you also, as I do, feel his quality of life has deteriorated to the point that it isn't much of a life left at all?
Again, thank you for your words and the encouragement. There really doesn't seem to be much information about the extramudulliary disease out there.
Warmest regards,
Eva
That is good news about your partner. I'm not sure I want anything else to work at this point...I hate to say but my husband has been through so much! He looks horrible and is in pain all the time. His doctors did discuss putting him in the pomalidomide trial but decided his disease appeared to be so agressive they didn't want to risk the 3 week de-tox to get all the chemo drugs out of his system. They wanted to start him on a new process immediately. He has the "bumps" all over his upper body--torso, arms, head and face! They are absolutely everwhere. Some are quite large and most are very painful. Several have turned deep purple and they say that is because they have become "vascular"....I admitted him to Emory yesterday and they immediately started him on 4 cycles of a chemo mixture. He will be on the IV 22 hours on, 2 hours off then start the next cycle of 22 on, 2 off...through 4 cycles. The drugs are a cytoxin type drug, a Velcade type drug and a couple others thrown in for good measure.
I'm curious about one statement in your reply. You said " His life is so, that you can call it one." Do you also, as I do, feel his quality of life has deteriorated to the point that it isn't much of a life left at all?
Again, thank you for your words and the encouragement. There really doesn't seem to be much information about the extramudulliary disease out there.
Warmest regards,
Eva
-
diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Multiple plasmacytomas in the skin
The update:
Gary was treated at Emory with the chemo infusion discussed earlier in this thread. It consisted of 4 rounds....22 hours each round with 2 hour breaks in between. After just the first 2 rounds he suffered acute kidney failure (apparently permanent). The treatment was stopped to allow the kidney function to begin again but when it didn't after about 4 days the treatment was continued. The damage was already done. It has been extremely rough on him and he has now spent 50 days in the hospital. We plan to bring him home on Thursday the 12th. He is working very hard with his physical therapist to regain his strength and to be able to walk again. He lost about 60 lbs and is very very weak. About 40 days past the treatment the "extramedullary" bumps are returning and visible under the skin. We are trying now to get a follow up clinic visit with Dr. Loniel. Gary was transferred from Emory to Morgan Memorial close to our home about 3 weeks post treatment and hasn't seen his oncologist since his transfer.
I really need to know the prognosis of this disease as he has fought such a hard battle and been a warrior through it all.
Thanks for any thoughts you all might have on the subject.
Warm regards,
Eva
Gary was treated at Emory with the chemo infusion discussed earlier in this thread. It consisted of 4 rounds....22 hours each round with 2 hour breaks in between. After just the first 2 rounds he suffered acute kidney failure (apparently permanent). The treatment was stopped to allow the kidney function to begin again but when it didn't after about 4 days the treatment was continued. The damage was already done. It has been extremely rough on him and he has now spent 50 days in the hospital. We plan to bring him home on Thursday the 12th. He is working very hard with his physical therapist to regain his strength and to be able to walk again. He lost about 60 lbs and is very very weak. About 40 days past the treatment the "extramedullary" bumps are returning and visible under the skin. We are trying now to get a follow up clinic visit with Dr. Loniel. Gary was transferred from Emory to Morgan Memorial close to our home about 3 weeks post treatment and hasn't seen his oncologist since his transfer.
I really need to know the prognosis of this disease as he has fought such a hard battle and been a warrior through it all.
Thanks for any thoughts you all might have on the subject.
Warm regards,
Eva
-
diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Multiple plasmacytomas in the skin
I read the following words at my husband's funeral Saturday January 28th, 2012:
Gary and I have been married 12 years and it has been a tumultuous relationship! We’ve had extreme highs and extreme lows.
To start, I owned a small farm west of Boise, Idaho where I raised some pretty nice Quarter horses and Paints along with Beefmaster cows. I lived in a dumpy little box house. When Gary and I met and married he undertook the project of completely remodeling the house. He drew up the plans and did much of the work, all the finish work, himself. He made it beautiful!! He did all natural wood interior doors, a custom fireplace mantel with inlaid tile accents, a walk in master closet of all pine that was nothing short of stunning! This was one of those “highs”….I could never have dreamed of owning such a beautiful home. We were just in the process of planning the lawn and landscaping when he got the transfer to Georgia!
May beautiful daughter was just starting her second year of college and wanted to continue there. Her grandparents and friends were all in Idaho and she chose to stay. I had to sell my newly remodeled castle and leave my daughter behind in Idaho. This was one of the first extreme lows….I grieved my losses.
Gary purchased us a beautiful home on a stunning property in Jackson, GA…about 20 acres of unfenced hay ground. He set to work immediately building me a 3 rail white fence around the property, a loafing shed for my horses, which I insisted on taking to GA, and a stable complete with stalls and sliding doors! It was fabulous!! He planted trees and flowers around the property and life was good.
Gary no sooner completed the barn, just barely 2 years in GA, when he developed an excruciatingly painful backache. He tried his local chiropractor and his general practitioner with pain meds and muscle relaxers. We thought it was from all the heavy lifting during the barn raising. He finally found Emory Spine Clinic on the internet and made an appointment. Dr. Heller found he had a collapsed, fractured T-2 vertebrae. They put him in the hospital, did surgery to remove the bone and begin testing to find out why. They discovered Multiple Myeloma. Extreme low. We went into shock and mourning. We read everything we could on the disease since we had never heard of it. The more we learned the worse it got. It is an ugly, ugly disease with no cure and a relatively short life expectancy.
Gary, always being the practical one, decided we must get rid of the horses and sell the property to downsize considerably. He couldn’t take care of the acres of lawn and pastures and we needed to conserve money. We don’t know what the future holds at this point. I went into the grieving process like no one you can imagine. My horses? My home with the beautiful new barn? How can this be? Gary sick? I couldn’t stop crying for about a year I think!! I still cry when I think of my horses…my babies, my loves.
We moved to a nice home in McDonough, small lot and quiet friendly neighborhood. Gary underwent his stem cell transpants..2 of them over a course of time. We met some wonderful people through this horrible disease…not the least of is the staff at Winship Cancer Clinic…Dr. Sagar Lonial, Charise, Melanie and all the nurses, doctors and PA’s that have cared for Gary and given him 5 extra years, but also others that are suffering with the disease. Not long after his diagnosis and while Gary was grieving and suffering debilitating depression, we met Mr. Robert Whatley, a sitting judge and attorney in LaGrange. He was the same age and stage of diagnosis as Gary. They took to each other immediately. Robert had a zest for life that rubbed off on anyone he met. It was all good for him and it was contagious. He brought Gary up out of his funk and they together faced their disease, their transplants and their treatment. We fell in love with Robert and his wife Carol. We tried to get together often for dinners and outings, we visited each other in the hospital, etc. This was another high.
Robert helped Gary to help others suffering from the disease and through this effort we met Randy Dixon who lived right there in Stockbridge close to us. Randy owned a bank and the first time we met him and his lovely wife Sallie, we fell in love with them! We met at a little restaurant behind the bank in McDonough for lunch and talked until supper like old friends that we had known forever. The 3 men became the 3 musketeers and fought their battles strongly and bravely. We would pick up Randy and Sallie and meet Robert and Carol ½ way in Peachtree City for plays, dinners, talks and good times just as often as we could. The last time we were all together was right close to Christmas one year. Robert wasn’t feeling well so Dixons’ and us traveled to LaGrange to pop in on him. We spent a joyful afternoon laughing, remembering good times, taking pictures and enjoying each other. Randy fell ill on the drive home and passed away a few days later. He died right at the promised 30 months from diagnosis. Robert and Gary vowed to fight on in his honor. We lost Robert about a year and a half later. Gary now had to carry the mantle on his own but was so honored to do so!! He was fighting now not only for his life but also in memory of his friends. He wanted to show them and everyone that this disease would not win!
Gary managed to get a bit of a remission and some better life quality for a spell. We built our lovely home in Madison when his company moved their facilities there. We moved into Camelot with the best neighbors anyone could ever hope to find!! We have so enjoyed the camaraderie and fellowship we share with these people.
I’ve gotten to do things, had opportunities I never could have imagined once I married Gary. He took me traveling around this great country, introduced me to foods and wines (he loved to cook and loved to eat and loved to visit restaurants he’d heard about) and wild adventures. I got to fly a glider over the Arizona deserts, feed an alligator in the Florida everglades, swim with dolphins in Jamaica, climb the Roman wall in the Mosal Valley of Germany and even dine with Sir Paul McCartney in Quebec city…well, at least in the same small restaurant at the same time he dined there! We lived an adventurous and exciting life for 12 years. We also spent a lot of time in the hospital and clinics. Sometimes it seemed all consuming.
During the progression of the disease I watched Gary get cut apart time after time. He had a dozen or so bad skin cancers develop due to the drugs used. He had huge gapping wounds cut across his back, arms and face to remove them. He had part of his spine removed, his left arm and right hip and femur, his eyes developed cataracts…no part of his body was left unscathed. Yet he endured it and kept going back saying to Dr. Lonial and his staff “what have you got for me now? What is the next course of treatment?” He signed on for drug trials, was one of the first few to endure a second stem cell transplant in this country and lived longer than the average patient was living at the time of his diagnosis.
We’ve had extreme highs and we’ve had extreme lows. We’ve had cancer. Now we don’t.
Thank you all so much for being his friend, for coming here to honor his life and to show your love.
I want to give a very special thank you to Melanie Bryan. She was with me every step of the way…not just the last days of Gary’s life but every day praying and cooking and just being the best friend anyone could have. Melanie was with me helping to administer his drugs, keep him comfortable and to support me while he passed. Gwen Turner was with me too and I thank you two from the bottom of my heart. I am so honored you were there to share his passing with me. I also thank Lynette and her Calvary of volunteers who lined up to take Gary to dialysis, cook for him and just drop by to keep him company. There are too many to thank…unless I were to just read the Madison Lakes directory…I hope you all know how much I appreciate you.
I’ll read a few words sent to me by one of Gary’s nurses at Winship:
I loved him – we all did. All patients are special, but Gary was “the bomb-diggity”, and I think he would appreciate that term. He was so warm and funny. When there was something he didn’t like, he let you know in no uncertain terms, not at all in a mean way – just matter of fact. And he was always right! And that’s a good thing for a patient to do. We knew we can trust him to let us know what’s going on, and we could fix whatever we needed to.
We miss him so much, even though we didn’t see him as often as we’d like in the last few months. There is no joy here at Winship. He will forever be in our hearts.
Gary and I have been married 12 years and it has been a tumultuous relationship! We’ve had extreme highs and extreme lows.
To start, I owned a small farm west of Boise, Idaho where I raised some pretty nice Quarter horses and Paints along with Beefmaster cows. I lived in a dumpy little box house. When Gary and I met and married he undertook the project of completely remodeling the house. He drew up the plans and did much of the work, all the finish work, himself. He made it beautiful!! He did all natural wood interior doors, a custom fireplace mantel with inlaid tile accents, a walk in master closet of all pine that was nothing short of stunning! This was one of those “highs”….I could never have dreamed of owning such a beautiful home. We were just in the process of planning the lawn and landscaping when he got the transfer to Georgia!
May beautiful daughter was just starting her second year of college and wanted to continue there. Her grandparents and friends were all in Idaho and she chose to stay. I had to sell my newly remodeled castle and leave my daughter behind in Idaho. This was one of the first extreme lows….I grieved my losses.
Gary purchased us a beautiful home on a stunning property in Jackson, GA…about 20 acres of unfenced hay ground. He set to work immediately building me a 3 rail white fence around the property, a loafing shed for my horses, which I insisted on taking to GA, and a stable complete with stalls and sliding doors! It was fabulous!! He planted trees and flowers around the property and life was good.
Gary no sooner completed the barn, just barely 2 years in GA, when he developed an excruciatingly painful backache. He tried his local chiropractor and his general practitioner with pain meds and muscle relaxers. We thought it was from all the heavy lifting during the barn raising. He finally found Emory Spine Clinic on the internet and made an appointment. Dr. Heller found he had a collapsed, fractured T-2 vertebrae. They put him in the hospital, did surgery to remove the bone and begin testing to find out why. They discovered Multiple Myeloma. Extreme low. We went into shock and mourning. We read everything we could on the disease since we had never heard of it. The more we learned the worse it got. It is an ugly, ugly disease with no cure and a relatively short life expectancy.
Gary, always being the practical one, decided we must get rid of the horses and sell the property to downsize considerably. He couldn’t take care of the acres of lawn and pastures and we needed to conserve money. We don’t know what the future holds at this point. I went into the grieving process like no one you can imagine. My horses? My home with the beautiful new barn? How can this be? Gary sick? I couldn’t stop crying for about a year I think!! I still cry when I think of my horses…my babies, my loves.
We moved to a nice home in McDonough, small lot and quiet friendly neighborhood. Gary underwent his stem cell transpants..2 of them over a course of time. We met some wonderful people through this horrible disease…not the least of is the staff at Winship Cancer Clinic…Dr. Sagar Lonial, Charise, Melanie and all the nurses, doctors and PA’s that have cared for Gary and given him 5 extra years, but also others that are suffering with the disease. Not long after his diagnosis and while Gary was grieving and suffering debilitating depression, we met Mr. Robert Whatley, a sitting judge and attorney in LaGrange. He was the same age and stage of diagnosis as Gary. They took to each other immediately. Robert had a zest for life that rubbed off on anyone he met. It was all good for him and it was contagious. He brought Gary up out of his funk and they together faced their disease, their transplants and their treatment. We fell in love with Robert and his wife Carol. We tried to get together often for dinners and outings, we visited each other in the hospital, etc. This was another high.
Robert helped Gary to help others suffering from the disease and through this effort we met Randy Dixon who lived right there in Stockbridge close to us. Randy owned a bank and the first time we met him and his lovely wife Sallie, we fell in love with them! We met at a little restaurant behind the bank in McDonough for lunch and talked until supper like old friends that we had known forever. The 3 men became the 3 musketeers and fought their battles strongly and bravely. We would pick up Randy and Sallie and meet Robert and Carol ½ way in Peachtree City for plays, dinners, talks and good times just as often as we could. The last time we were all together was right close to Christmas one year. Robert wasn’t feeling well so Dixons’ and us traveled to LaGrange to pop in on him. We spent a joyful afternoon laughing, remembering good times, taking pictures and enjoying each other. Randy fell ill on the drive home and passed away a few days later. He died right at the promised 30 months from diagnosis. Robert and Gary vowed to fight on in his honor. We lost Robert about a year and a half later. Gary now had to carry the mantle on his own but was so honored to do so!! He was fighting now not only for his life but also in memory of his friends. He wanted to show them and everyone that this disease would not win!
Gary managed to get a bit of a remission and some better life quality for a spell. We built our lovely home in Madison when his company moved their facilities there. We moved into Camelot with the best neighbors anyone could ever hope to find!! We have so enjoyed the camaraderie and fellowship we share with these people.
I’ve gotten to do things, had opportunities I never could have imagined once I married Gary. He took me traveling around this great country, introduced me to foods and wines (he loved to cook and loved to eat and loved to visit restaurants he’d heard about) and wild adventures. I got to fly a glider over the Arizona deserts, feed an alligator in the Florida everglades, swim with dolphins in Jamaica, climb the Roman wall in the Mosal Valley of Germany and even dine with Sir Paul McCartney in Quebec city…well, at least in the same small restaurant at the same time he dined there! We lived an adventurous and exciting life for 12 years. We also spent a lot of time in the hospital and clinics. Sometimes it seemed all consuming.
During the progression of the disease I watched Gary get cut apart time after time. He had a dozen or so bad skin cancers develop due to the drugs used. He had huge gapping wounds cut across his back, arms and face to remove them. He had part of his spine removed, his left arm and right hip and femur, his eyes developed cataracts…no part of his body was left unscathed. Yet he endured it and kept going back saying to Dr. Lonial and his staff “what have you got for me now? What is the next course of treatment?” He signed on for drug trials, was one of the first few to endure a second stem cell transplant in this country and lived longer than the average patient was living at the time of his diagnosis.
We’ve had extreme highs and we’ve had extreme lows. We’ve had cancer. Now we don’t.
Thank you all so much for being his friend, for coming here to honor his life and to show your love.
I want to give a very special thank you to Melanie Bryan. She was with me every step of the way…not just the last days of Gary’s life but every day praying and cooking and just being the best friend anyone could have. Melanie was with me helping to administer his drugs, keep him comfortable and to support me while he passed. Gwen Turner was with me too and I thank you two from the bottom of my heart. I am so honored you were there to share his passing with me. I also thank Lynette and her Calvary of volunteers who lined up to take Gary to dialysis, cook for him and just drop by to keep him company. There are too many to thank…unless I were to just read the Madison Lakes directory…I hope you all know how much I appreciate you.
I’ll read a few words sent to me by one of Gary’s nurses at Winship:
I loved him – we all did. All patients are special, but Gary was “the bomb-diggity”, and I think he would appreciate that term. He was so warm and funny. When there was something he didn’t like, he let you know in no uncertain terms, not at all in a mean way – just matter of fact. And he was always right! And that’s a good thing for a patient to do. We knew we can trust him to let us know what’s going on, and we could fix whatever we needed to.
We miss him so much, even though we didn’t see him as often as we’d like in the last few months. There is no joy here at Winship. He will forever be in our hearts.
-
diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
12 posts
• Page 1 of 2 • 1, 2