Thomas Goode survived multiple myeloma | doxil | plasmacytoma | engraftment | vorinostat | velcade

https://youtu.be/ago7ms-p2jI

DESCRIPTION

It wasn’t easy, but Thomas Goode managed to survive Stage III multiple myeloma, a rare form of blood cancer that originates in bone marrow.  When he first experienced pain in his left shoulder, it was misdiagnosed as bursitis.  Then he underwent a stem cell transplant no less than three times, with his oldest brother donating the bone marrow for the final two procedures.  Thomas has achieved Minimal Residual Disease status and says his physical health is roughly 70 percent of what it was, pre-diagnosis.

In 2005, Thomas Goode was leading an active lifestyle.  It included bicycle riding and working out.  But when he was on vacation with his family, he went to the gym and suddenly experienced acute pain in his left shoulder.  He went to his family doctor who said Thomas had bursitis and prescribed pain pills.  Thomas was skeptical of this diagnosis because it came because no scans were performed.

He sought a second opinion and went to his orthopedic surgeon.  The doctor called for an MRI and it revealed a tumor near his shoulder and said it was the source of Thomas’ pain.  He had the tumor biopsied and it showed a plasmacytoma, cancer that progress to become multiple myeloma.  Thomas underwent six weeks of radiation treatment.  The pain went away, but it returned. 

Thomas’ multiple myeloma specialist suggested a stem cell transplant, an option Thomas accepted.  It began with induction therapy, backed by doxil, vincristine and dexamethasone, aimed at bringing his white blood cell down to a number that would allow for a stem cell transplant.  However, the procedure didn’t work.  The specialist recommended a second stem cell transplant.  Thomas learned his oldest brother was a perfect for a bone marrow transplant. 

The second stem cell transplant included compath, fludarabine and melphalan.  It also didn’t work, so a third one was performed with velcade, doxil and vorinostat.   Thomas followed this with eight days of radiation.

His care team proclaimed Thomas is Minimal Residual Disease-negative. 

Thomas Goode says his health is about 70 percent of what it was before his diagnosis.  He can still work out but acknowledges he will always have some level of back pain.

By way of advice, he would tell anyone diagnosed with multiple myeloma that the disease is not a death sentence.  He says that’s because there are more treatment options and better treatment options than when he was diagnosed.

TRANSCRIPT

Thomas Goode

Bruce Morton: Greetings, this is the Cancer Interviews podcast, and I am your host, prostate cancer survivor Bruce Morton.  Multiple myeloma is a rare blood cancer originating in bone marrow.  Our guest on this episode has survived a Stage III diagnosis of multiple myeloma and is here to share an inspiring story.  He is Thomas Goode of Durham, North Carolina, and Thomas, welcome to Cancer Interviews.

Thomas Goode: Thank you, Bruce, for having me.  I am happy to be here.

BM: It is our custom to learn a little something about our guests before we discuss cancer, so if you would, Thomas, briefly tell us a bit about where you are from, what you have done for work and what you like to do for fun.

TG: I was born in Virginia.  I am the youngest of eleven children, seven of them biological.  I went into the United State Navy as an electronics technician.  I did four years of active duty and when I got out, I started working in the prison system as a guard; but I also stayed in the military reserves, and I did another ten years in the military reserves while I was a prison guard.  Some of my hobbies include exercising, riding my bicycle and hangin’ out with my friends and my family.

BM: For all of us who have been on a cancer journey, there was that time when something about our health didn’t seem right and that ultimately led to a cancer journey.  For Thomas, when did you first notice something wrong and what was it?

TG: I noticed something was wrong when I was on vacation with my family in 2005.  We was at the beach and I was at the gym, and I felt some excruciating pain in my left shoulder.  I have never felt that pain before, so even when I raised my arm, the pain was just excruciating.  Another guy was there and looked me in the face and asked how long I had had that pain because he saw the grimace when I lifted.  The pain subsided and I was able to enjoy the rest of the vacation with my family.

BM: Did you seek medical attention right away?

TG: When I got back home, I was playing basketball in my yard and the pain came back and it was excruciating once again.  So, I went to my family doctor.  They did a movement of my body.  They moved my arms up and down, side to side, and asked if it was painful.  I said yes.  He said it was probably bursitis in my shoulder and sent me on my way. 

BM: That doesn’t sound like cancer.  That sounds like a misdiagnosis.  Did you know that you were misdiagnosed?

TG: This was definitely a misdiagnosis.  With the pain that I had, I thought he would do some type of imaging, but he didn’t do that, no x-rays, no MRIs.  The only thing he did was give me some pain medicine and said if the pain came back, he would do something different.

BM: So, I am guessing you sought a second opinion.

TG: Yes.  From there, I went to my orthopedic surgeon.  I had seen him before because I had a torn meniscus and he fixed that for me, but he was also a neck and back specialist as well.  I went to him knowing that the protocol in his office is to include an MRI.  He did that and within a few weeks, the results came back and he told me he had a tumor in that area.

BM: And what happened after that?

TG: He biopsied that tumor and sent it to pathology.  When it came back, he called me into his office and said I have a plasmacytoma in the area, and I asked for an explanation.  He said it is a cancerous tumor that is isolated in one area and that is wat is causing your pain.  He said when it progresses, it turns into multiple myeloma.  He said there was nothing else he could do, so he sent me to an oncologist.  Once I got to the oncologist, he ran some tests, he saw what he was going through from there and sent me to a radiation specialist because radiation can be done in that area to get rid of the tumor, and then I can go back to my normal life.  So, I did six weeks of radiation and after the six weeks, everything seemed better. 

BM: But you were told you had cancer.  How did you handle this awful news?

TG: Well, when I heard the word “cancer,” I wondered if I was going to die.  Then, after going home and thinking about it and reading up on it and finding out multiple myeloma is a non-curable disease, then it exacerbated the thought that I was going to pass away, making it worse.  I didn’t know what to do, I didn’t know what to expect.  I was married, I had a young kid in the house.  It was tough to fathom all the things I was thinking about, knowing that this could be my demise.  I could perish from this because myeloma was not as prominent as it is today.

BM: By the way, we hope you will find time to like and subscribe to our channel.  And if you click on the bell icon, you will be notified anytime we post an interview.  We also want to remind you that on Cancer Interviews, we are not distributors of medical advice.  If you or a loved one seek medical advice, please contact a licensed health care professional.

Now, Thomas, I want to go back to the intro for our interview in which I noted multiple myeloma is a rare type of blood cancer.  That said, did you have a difficult time finding a competent care team?

TG: Bruce, I am happy that I am in the area that I live in.  I was happy to have a great oncologist.  Even after him, I got in line with the great myeloma specialist that is our area as well.  I am grateful for my treatment team.  I didn’t have any problems finding a specialist or the medical team that I needed to progress in my myeloma journey. 

BM: That is great to hear.  Now you had mentioned radiation, but where treatment is concerned, did you have options?

TG: At the beginning of my journey, I did not have a lot of treatment options, so even after I did the first six weeks of radiation and we were in approximately 2006 with the radiation treatment, at the end of 2006, I started feeling pain once again.  This time the pain surfaced in my lower back.  I didn’t feel it in my ribs, but I knew after I was tested that I had problems in my ribs, too.  So, I went back to that orthopedic specialist and he called for x-rays and an MRI, and found I had tumors in my lower back and my ribs as well.  I did more radiation treatment after that.  Then the oncologist gave me an option to get my plasma cells down.  Then we went to the specialist because they had treatment options for me as well, including a stem cell transplant.

BM: And did you go ahead with the stem cell transplant?

TG: I did.  I had three medicines during my induction therapy.  They were doxil, vincristine and dexamethasone.  Those brought down my plasma cell numbers to a reasonable number so I could go to the stem cell transplant.  I went in for the stem cell transplant on July 17, 2007, my exact transplant date.  My white blood cells were wiped out.  They went to zero, then they started boosting the white cells back up.  That’s engraftment.  Unfortunately, a few weeks later, they noticed that the plasma cells were too high and the stem cell transplant didn’t work.  Then they said they would check the registry to see if I had family members on the bone marrow registry to see if any family members are a perfect match so that they may be a donor.  My seven biological siblings were tested.  My oldest brother was the only perfect match, so he and I went through a stem cell transplant, the second for me, and that was an allogeneic transplant with him as my donor.  So, to go back to your question, stem cell transplants and induction therapy and radiation were the treatment options that I had. 

BM: And when you go back and look at your treatment regimen in total, what would you say was the toughest part?

TG: The toughest part was after the second stem cell transplant I did reach a good remission.  I like the word ‘response,’ instead of the words remission, and I did make a complete response for about two years.  Unfortunately, the pain came back again, this time it was in my upper back.  I reached out to my doctor again and asked if I could get a PET scan and she asked why.  I said because I feel something different, so she said yes.  She did the PET scan, and the results came back that I had another tumor in that area, where I felt the pain and she said my brother needed to be brought back for a third stem cell transplant because at that time, that was the only treatment option for multiple myeloma.  So, I did a third stem cell transplant, with my brother as the donor for a second time.  This time we went through different medications.  They were velcade, doxil and vorinostat.  That was for the second transplant.  For the first one it, was compath, fludarabine and melphalan.  So, those first three drugs helped me get that deep remission or deep response, then the next three drugs helped me get rid of that tumor in my lower back, that and the radiation.  However, after that I did eight days of radiation, eight days of total body radiation, that’s twice a day for four days.  Then I got my brother’s stem cells back and I was in the hospital to receive them.

BM: So, even now, in terms of the here and now, would you say you are in full response mode?

TG: I do feel responsible saying I am in a really good place.  That’s MRD-negative, which is minimal residual disease-negative. 

BM: Let’s your health prior to your diagnosis, 100 percent.  From a physical perspective, these days, how close is your health to 100 percent? 

TG: I would never say 100 percent because after every treatment option, I reset.  I would call it my new normal.  I don’t go back to before my days before my diagnosis.  I go back to when I started feeling back, when I felt back and when I started feeling better.  Even with my new normal, I feel 70 percent.  I feel like I always have some back pain because when I had all that radiation I had scar tissue in that area and one of the things that I advocate now is that when doctors provide radiation treatment for patients that they should also provide physical therapy for them as well because physical therapy can clear up the area so that the scar tissue isn’t as bad over time. 

BM: You have mentioned the various types of treatment you have undergone, but it occurs to me that there is no way you can get to this place without your brother.  Just how much of a hero is he to you?

TG: My brother is my hero.  When I was diagnosed, he was the first family member that I called.  It was around Thanksgiving, I told him and I asked him to not tell anybody because I did not want to ruin their holiday, so I told him I was diagnosed with this cancer.  Then when the family had to be tested, he told the rest of them there is no need for them to be tested because he would be the one to donate.  From there, he was ecstatic.  He said if he had to do it again, he would and he did do it again.  Within that process, after my stem cell transplant, I had one year of response, and I relapsed once again and I went on velcade.  Then I was on revilimid for seven years.  So, my brother said he did what he had to do and he would do it anytime that I need him.

BM: Thomas, we are going to wrap up now, and we are going close the way we usually do, with this question: If you were to run into someone freshly diagnosed with multiple myeloma, that person might have lots of questions for you and you might have lots of answers, but if there is anything you wanted to make sure the person you were talking to would remember as your conversation concluded, what would that be?

TG: What I would tell a newly-dignosed patient about multiple myeloma is, first of all, it is not a death sentence.  I say that because you will hear that multiple myeloma is not curable.  Second, I would tell them there are so many treatment options available now compared to when I was diagnosed.  And then I would tell them to learn their particular type of myeloma because your treatment options can be targeted for your particular type of myeloma.  Finally, I would tell them to live their life to the fullest.  Cherish every day as if it is your last and enjoy every time you have with friends and family. 

BM: Wonderful.  Thomas Goode, Durham, North Carolina.  Thank you very much for an inspiring story and major kudos to your brother for his role in this inspiring story.  Thomas Goode, thanks so much for being with us on Cancer Interviews.

TG: Thank you, Bruce, for having me.

BM: And we want to remind you as we always do when we wrap up, that if you or a loved one are on a cancer journey or if you think there is the possibility of a cancer diagnosis, there are individuals like Thomas, and his brother, that can make that cancer experience a little bit easier.  So, until next time, we’ll see you on down the road.

Additional Resources:

Thomas' Support Group: Triangle Area Myeloma Support Group

SHOW NOTES

Thomas Goode Rough Draft

TITLE: Thomas Goode, Multiple Myeloma Survivor – Durham, North Carolina, USA

It wasn’t easy, but Thomas Goode managed to survive Stage III multiple myeloma, a rare form of blood cancer that originates in bone marrow.  When he first experienced pain in his left shoulder in 2005, it was misdiagnosed as bursitis.  Then he underwent a stem cell transplant no less than three times, with his oldest brother donating the bone marrow for the final two procedures.  Thomas has achieved Minimal Residual Disease status and says his physical health is roughly 70 percent of what it was, pre-diagnosis.

Time Stamps:

01:49 Thomas’ journey began when he felt sharp pain in his left shoulder.

03:30 The pain was originally misdiagnosed as bursitis, but a second opinion revealed a tumor in his shoulder.

06:03 Reaction to diagnosis.

09:48 After six weeks of radiation treatment, pain returned to his lower back.

10:41 Thomas decided to seek a stem cell transplant.

13:13 Reveals the toughest part of his treatment regimen.

14:18 Did a third stem cell transplant.

16:09 Thomas is asked how close his health is to 100 percent.

21:11 Advise for others.

KEYWORDS (tags):

multiple myeloma

doxil

plasmacytoma

induction therapy

vincristine

dexamethasone

engraftment

vorinostat

allogeneic stem cell transplant

velcade

compath

fludarabine

melphalan

revlimid

minimal residual disease