Victor Phiri survived Stage 3b multiple myeloma | bortezomib | radiation therapy

DESCRIPTION

Victor Phiri continues to work as a pharmacist after twice surviving Stage 3B multiple myeloma, a cancer of bone marrow plasma.  In 2018, Victor began to experience pain in his lower back.  He was given the pain relief medication bortezomib, which provided no help.  He declined an MRI, but the pain worsened, and Victor was wheelchair-bound.  Victor was brought to a hospital, underwent a series of tests and multiple myeloma was indicated.  This is a disease often diagnosed in people older than 60 years of age, but at the time Victor was 32.  He was then put on a regimen of targeted chemotherapy.

In his hometown of Lusaka, Zambia, prior to his diagnosis, Victor Phiri was in good health, and liked to play basketball.  One day in 2018, when coming home from the gym, he began to feel severe pain in his back.  The pain became more acute, and Victor couldn’t move.  He went in for a medical checkup, was given some pain medication, took it and the pain went away. However, the pain returned, Victor was given bortezomib, and the pain stayed.  His lower extremities were partially paralyzed, which confined him to a wheelchair.  A doctor insisted on some tests whose results were processed outside Zambia.  When they came back, that’s when Victor learned he had cancer.

Victor Phiri went on a regimen of targeted chemotherapy.  He had the usual side effects of nausea, vomiting, pain in his lower limbs and lack of appetite; what he didn’t expect was a loss of his eyesight.  Victor became quite depressed and said he was crying every day.  He went on to say members of his church provided a great deal of moral support and fiscal support.  When they learned that targeted chemotherapy was very expensive, they raised enough money to pay for the procedure.

Meanwhile, his eyesight decreased.  He lost the use of his left eye and vision in his right eye is not good.  But in 2020, Victor went into remission.  He couldn’t play basketball, but returned to the gym to exercise.  Just when it seemed like things were going well, Victor experienced pain in his left humerus bone, and medication would not bring relief.  A medical checkup revealed the bone was almost completely “eaten up.”  This meant the multiple myeloma had returned and Victor needed to go on radiation therapy, which helped with the pain in his arm. 

Victor Phiri does have not full range of motion in his left arm, and has limited sight in one eye, but he is grateful to be able to continue his life’s work as a pharmacist.

By way of advice, Victor, who has been through a lot, says to remain positive and take care of yourself, because you are the best asset you have.

TRANSCRIPT

Bruce Morton: Greetings and thanks for joining us on the @CancerInterviews podcast.  I’m your host, Bruce Morton.  Multiple myeloma is a cancer of bone marrow plasma cells affecting the places bone marrow is active in an adult.  On this episode, we will hear from a man on a journey with multiple myeloma.  He is Victor Phiri of Lusaka, Zambia.  So, let’s get to it, and Victor, welcome to Cancer Interviews.

Victor Phiri: I am delighted to be here, thank you very much, Mr. Bruce

BM: Victor, you are the first guest we have had from Zambia, which is in South Central Africa.  For those of us who don’t know a lot about your homeland, fill us in, tell us more.

VP: Okay.  Zambia is one of the most beautiful countries in the world.  One of the most important things that I look forward to every day is the aspect of peace that we enjoy here in Zambia.  The other thing is the tourism and the nature of the people of Zambia, who are nice to each other.  We have diverse languages, but our primary language is English.

BM: I know that in Ethiopia, there are like 270 languages.  How many are there in Zambia?

VP: We have 52 languages.

BM: And how many can you speak?

VP: I can speak about four.

BM: Well, that’s four more than I can speak.  Now, I just want to learn a little bit more about you, Victor, exclusive of your involvement with cancer.  What do you do for a living and when time allows, what do you do for fun?

VP: Before cancer, I used to play basketball.  For fun, I would play basketball, a lot of it; but now I cannot play basketball due to a lot of things relating to my diagnosis.  By profession, I am a pharmacist.  During my free time, I am mostly home with family, but I spend much of my time at the hospital.

BM: You answered this question in part because you talked about being on the basketball court, but prior to your diagnosis, what was your health like?

VP: Very well and physically fit.  I enjoyed basketball a lot and would go to the gym.  That was before, and then when I was diagnosed with cancer, because of the treatment, so things actually changed.  One of them was my eyes.  So, one eye is completely off, so I cannot play basketball anymore.

BM: You mentioned the problem with your eye, but you also mentioned you were in good health prior to your diagnosis.  At what point did you notice something wrong, that something was not normal?

VP: In 2018, there was one day I was coming home from work.  After work, I went to the gym.  When I left the gym going home, I felt this pain in my back, my lower back and after I got home, I couldn’t move.  The whole time I was just lying down in pain.  That night was horrible, but the following day, I was able to move, I was even able to go to work.  So, I went to work, but the whole time, I was sick and that was the beginning of my multiple myeloma journey.  I was constantly on pain relief medication.

BM: Against that backdrop, did you seek medical attention right away?

VP: No.  I took a bit of some time and after I went for a medical checkup, they did an x-ray and said I was okay, and put me on pain relief medication.  After some time, I felt better.  I got better and continued with my life.  Then on October 10, 2018, that’s when I had this serious lower back pain that I couldn’t handle.  So, from there I was rushed to the hospital.  When I went to the hospital, I was down for some time.  The doctors looked at me and gave me a pain relief medication which was bortezomib.  They asked me if I could come back to the hospital the following day.  When I went the following day, I was again in severe pain, and they had to admit me.  So, when I was admitted, I stayed for four or five days, relieved because I felt better, but one of the doctors was inquisitive.  I said I should undergo an MRI.  They ran a couple of tests, then he said there was something that doesn’t sit well with me, the presentation of your results, which is why he thought I needed an MRI.  I went home and because I was feeling better, I decided not to do an MRI.  But the next day when I went back to the hospital, I was wheelchair-bound, which meant that my lower extremities were partly paralyzed.  The doctor knew my problem was quite serious.  He asked if I did an MRI and I said I didn’t.  He pushed for a couple of tests whose results were processed outside Zambia.  After a week the results came back, and they were indicative of multiple myeloma.

BM: So, that’s when you got your diagnosis.

VP:  Yes.  I was seen by a general doctor and an orthopedic doctor.  The orthopedist was very shocked, saying I was too young to be diagnosed with multiple myeloma.  He said this is a cancer diagnosed in people in their 60s, and here I was, 32 years old.  That was the beginning of my journey.  A couple of doctors came through and said I should be moved to the cancer center.

BM: Did you feel confident that there were the resources that you needed to address your situation?

VP: Honestly, by then, I understood what cancer was.  I was almost finishing my pharmaceutical school.  I was in my final year.  So, I knew there was no way out, and I went into depression.  It was very devastating. 

BM: By way of treatment, Victor, did you have options?

VP: I did.  I will say this.  I was one of the most fortunate people to be treated by one of the best doctors.  That was 2018.  I was lying down on that bed.  I came in with a friend from my church.  She said to the doctor to give me the best treatment and the church will pay for it.  So, I knew that when it comes to chemotherapy treatment, because of my background, I knew that there was the targeted chemotherapy, which is very expensive.  He said he could he put me on the targeted chemotherapy, but it is quite expensive.  She said give him the best treatment and we’ll take care of it.

BM: So, by going that route, you did not have to go through chemotherapy?

VP: It was chemotherapy, but it was targeted chemotherapy, so it meant it was going to have a number of side effects.  Yes, I had side effects, but they wouldn’t be compared to the traditional chemotherapy type of treatment.

BM: Okay, so what were your side effects?

VP: My side effects were the usual.  The nausea, vomiting and I started losing my sight.  That was pretty gradual, but when you were talking about the nausea and vomiting, that was quite excessive, also sweat in the night, pain in the lower limbs and lack of appetite as well.  I lost a lot of weight. 

BM: You mentioned the depression piece in all of this.  How was your ability to cope with this?

VP: Mr. Bruce, when we talk about depression, we are talking about the moment I received my diagnosis.  I remember the moment I was told, “You have cancer.”  For me, coming from the medical community, I had a great deal of understanding of cancer, and I knew this was a death trap and there was no way I was going to come out of it.  I sank into depression and did not want anybody near me.  I was crying every day.  I constantly used to ask myself a question, “Why me?  I am just trying to be the best guy that I can in terms of health care.”  But fortunately, I had the best support team.  I am the most fortunate person ever.  I always tell myself that every day because inasmuch as I was so negative toward everybody, people kept coming through and taking good care of me.

BM: By way of support, would you say it was family and friends who provided support,or did it come from another source?

VP: First and foremost, I had the holistic type of support from all aspects of life, but the most prominent was the faith, my church.  My church came through.  They were actually the ones that bought the medicine for me.  We actually got the drugs from India and brought into Zambia and that took about two weeks.  So, the church played a very important role when it comes to my treatment because it ensured I was given the best treatment.  Then when we narrow it down to my family, family support was constantly there for me, and to a larger extent, I used to feel for them more than they felt for me, largely because they were always there to encourage me and take care of me, and they kept telling me that I would get better.  One thing I know for sure is that there was no way I was going to come out of that death trap which I firmly believed I was in.

BM: Would you say your faith still plays a role in your cancer journey?

VP: Very critical, very critical.  Because the people at my church gave me hope and allowed me to give myself to God and believe.  When I realize that chemotherapy, radiation therapy, these were just going to suppress my cancer, but buy more time, but one of the things I needed was that I needed a cure, and the only way I could get cure is from God.  I am a strong believer because I am here because of Him, and I ask of Him, if you save me, I will tell everybody that it was you and here I am, and that’s what happened.

BM: Next question for you, Victor, is your talking about how your vision has suffered during this time and you talked about how the doctor who made the diagnosis was surprised that it was multiple myeloma.  Your decreasing vision, was that something you expected, was that something you were told to expect that, or did that come as a surprise as well?

VP: When you check in terms of multiple myeloma, those are rare cancers and you look at the regimen of the drugs I was on, it was a very rare case, most unfortunate incidents.  To stay positive, it was tough, but I wanted to be positive.  So, what happened during the whole journey of treatment, I just noticed that my eyes started getting glassy and my vision blurred.  With time, I became myopic and could only see objects that are close by.  Then it got worse on my left eye, so with my left eye, they tried to do what they could, and I remember on December 26, 2020, that’s when I had my eye operation where the retina was completely detached and to put it back in place, but until now, my left eye is completely gone.  I am just using one eye, which is my right eye, and it is not in a very good state.

BM: Victor, you had mentioned how your decreased vision ended your activity on the basketball floor, but by trade, you are a pharmacist.  How is your work as a pharmacist affected by having only one good eye?

VP: I am.  One of the things that I told myself was I have to stay positive.  Just to take you back a little bit, when I was diagnosed and started my treatment, it meant I had to stop school, and I was only six months from graduating.  I started treatment on November 29, 2018.  By the time it was June 20, 2019, I had gone into total remission.

BM: That’s outstanding.  We talked about the eye and the pain in your lower back.  Multiple myeloma can also affect blood, kidney function and one’s immune system.  For you, were any of those areas affected?

VP: If I take you back again, prior to my diagnosis, my hemoglobin was low as five, so a clear indication this type of cancer had already crippled me and when they did the diagnostic workup, in the staging, it was Stage 3B, which simply means very close to a full blown-up disease.  Doctors were constantly shocked when they saw me standing and my HB was as low as five. 

BM: On Cancer Interviews, we don’t provide medical advice, and I am not asking you to promote any specific brand; but you are a pharmacist, and knowing what you know, can you say there are medications out there that can effectively treat multiple myeloma?

VP: Yes, they can.  One of the most important things we need to understand is that I have always told people that the gold standard of whatever treatment you seek whenever you are not feeling well, do a complete body checkup.  Any condition, when it is caught at the right time, the prognosis in terms of outcome, it has a better chance of being positive.  That’s why when I am not feeling well, I have a thorough checkup done of my body before I start taking any type of medication.  When we talk about treatment of cancer, patience also plays a very important role.  What we must understand is the whole holistic approach in terms of clinical care, but the patient plays an important role.  That’s because in pharmacy we operate on two principles.  The first one is maximizing the effectiveness of the drug.  The second one is compliance.  So, when it comes to compliance, the patient should comply for us to get the desired results.  Referring back to your question, the pharmaceutical industry is basically trying to research and see which treatments would be the best.  With regards to drugs, there are a lot of newer drugs that have been developed and I have faith in all of them.

BM: You had mentioned going into remission, Victor, but there is more to your cancer journey, yes?

VP: Yes.  As mentioned on June 20, 2019, I went into remission.  So, when I went into remission, after about two or three months, I returned to school.  When I went back to class, my eyes were doing pretty bad.  I told myself the fact that I have life, I shouldn’t compete with anybody.  I retained information more.  I struggled to read, I know that, but I made sure that when I people read stuff for me, I would not forget.  I made sure I used every available resource for me to get the best outcome in whatever I do.  I have been in remission for the past two years, so I was quite fortunate.  I went into total remission, which meant that I had been off medication for two years.

BM: That said, are you optimistic about your journey that it will continue to trend in a good way?

VP: I am very optimistic.  At the same time, I am aware of anything that might avail itself in my direction in terms of uncertainty with cancer.  Cancer can come back at any time and you must be aware of that.  That’s the only way you can fight it.  If you live in denial, you cannot fight it.  When I went into remission in 2020, I became very active.  I would go to the gym, and get fit.  Unfortunately, I started having pain in my left humerus bone, and medication would not give me relief.  That’s when I did a medical checkup, only to realize my humerus bone was almost eaten up.  That’s the bone near my left bicep and tricep, and it was almost eaten up to completion.  The doctors said this was an indication that the multiple myeloma was back, and that a regimen of radiotherapy was needed.  I started radiation therapy on my arm, which helped with pain.  On the positive side, my arm is doing better because I was in severe pain the whole time.  I have undergone a couple of tests, and like you say, multiple myeloma attacks internal organs like the kidney, liver and heart, because it is a blood cancer.  The blood going to kidney, liver and heart is not proper blood, which leads to multiple conditions, but when we checked, we saw my kidney, my heart and my liver are doing pretty much okay and the calcium level is still fine, I will be undergoing more tests.  Right now, I can say I am being seen by a specialist in multiple myeloma that we have at the university teaching hospital.

BM: As the arm is now, what can you do and what can you not do with that arm?

VP: I cannot physically do all the things I used to do with that arm.  I can’t flex it, I can’t push forward, I can’t push back.  All the time I need help when I am dressing up.

BM: Would you say with this being your second go-round with multiple myeloma, are you mentally better prepared to deal with it?

VP: Yes, I am.  One of the strengths it has given me is the aspect of being alert, that and being optimistic and at the same time being aware of the opportunity that is ahead of me.  This means I am quite aggressive on a lot of things, aggressive on my diet, aggressive on my mental health, because I think that is very important.  I remember when the doctor sat down and looked at me and said the cancer is back.  It was devastating.  When they told me, they said they knew I was a health care professional, you understand science very well, and asked me how it felt to know the cancer is back.  I said it is okay, I’m okay with it; but when I went back home, I saw my loved ones and I had to break that news to them because they kept asking if they should come to the hospital, but I said I can get the news on my own.  So, I was the one to break it to them.  It was a very touching moment.

BM: And how did your family take it?

VP: It strained them a lot, more than me.  One of the things I have come to learn is the caregivers may take such news worse than the patient because they care so much.

BM: Victor, we are going to wrap up now, and we always end our interviews from the same place.  Imagine if you encountered someone who has just been diagnosed with multiple myeloma.  If you had a message for them and there was one point you wanted to make, one that would stand out over all others, what would it be?

VP: Diagnosis is not the end of your life.  One of the most important things every human being needs to understand is your will to live should be greater than your adversity.  Your will to live should be greater your adversity.  A motivational speaker once said when it comes to tragedy or adversity, it’s whether you are in one, getting into one or there is one that awaits you.  So, you might be complaining about multiple myeloma, and the next guy might be gasping for air, so if you going through the most devastating aspect of your life, you need to stay focused because the mind plays a very important role in everything that you might be going through.  So, you have to stay positive, and you have to take extra care of yourself because you are the greatest asset you have.

BM: Victor Phiri, thanks so much for sharing your story and thanks so much for sharing some pearls of wisdom, which I hope for viewers and listeners will be both information and inspirational because have been on the receiving end of some inspiration and I think you are passing that along to others as well.  So, Victor, thanks very much for being with us.

VP: I was delighted to be here.  Thank you very much.

BM: That’s going to wrap it up for this edition of Cancer Interviews.  As always, we want you to know that you are not alone.  There are people like Victor who bring a message of inspiration to you or a loved one or a loved one or anyone on a cancer journey.  So, until next time, we’ll see you on down the road.

Website: www.cancerinterviews.com

SHOW NOTES

TITLE:  Victor Phiri, Multiple Myeloma Survivor – Lusaka, Zambia

Multiple myeloma is a rare form of cancer affecting the places where bone marrow is active in an adult.  A diagnosis of Stage 3B multiple myeloma cost Victor Phiri the use of his left eye and reduced the field of vision in his right eye.  After he went into remission, osteolytic lesions were discovered in his left humerus bone, which limits the function of his arm.  Thanks to his faith and the support of friends and family, Victor maintains a positive attitude and continues to work as a pharmacist in Lusaka, Zambia.

Additional Resources:

Cancer Interviews: https://www.cancerinterviews.com

Time Stamps:

03:15 Victor experienced extreme pain in his lower back.

04:37 Pain left, but then came back, leaving him wheelchair bound.

06:13 Subsequent test revealed he had multiple myeloma.

10:20 After his diagnosis, Victor became quite depressed.

14:09 Lost the use of his left eye and vision in his right eye was impaired.

17:21 Drugs can combat multiple myeloma.

21:08 Victor began to feel pain in his left humerus bone, meaning multiple myeloma had returned.

24:05 How multiple myeloma has affected the use of his left arm.

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