I am a 76 year old woman who was diagnosed with multiple myeloma in January 2015 because my primary care doctor should really be called Dr. OCD. I am very lucky that he is so completely thorough.
I had to do a pre-op before some orthopedic surgery and after the blood work came back he called me. Most physicians only look at the pre-op for the scheduled surgery. He saw that I was anemic, so instead he looked at 4 years worth of pre-ops. What he said was, "Every time you have blood drawn, you are a little more anemic. We should look into this". Looking into it led to a possible diagnosis of MGUS but in reality a little more exploration and a bone marrow biopsy proved that it was multiple myeloma. I had then and still have none of the visible symptoms.
I was referred to a wonderful oncologist in the same large medical practice. I should also say that I'm within the Johns Hopkins Medical System orbit, so I have great faith in my physicians and treatment options. From January 2015 to April 2015 I was not treated at all. When further blood tests showed that my lambda light chains were, in the oncologist's words, "Crazy High," we started treatment with Velcade and dex.
I go for treatment once a week for 3 weeks and then have 1 week off. I have been on this same treatment for a year and it was working well until last month, reducing the lambda light chains by 70%. Now they are rising and we are going to add Revlimid as soon as I can get enrolled in their program.
After a year of treatment, my multiple myeloma is fighting back. I have found this pretty depressing but have great faith in my doctor, not the least because he treats me as a person and takes the time to explain everything I need to know in detail. I am a data driven decision maker and knowing more helps me feel at least a little bit in control of my life.
I am happy to have found The Myeloma Beacon. I am generally an optimist, but I confess that this week has thrown me for a loop. I expect to regain my psychic balance eventually and am grateful for all of the support available here.
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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: About my multiple myeloma journey so far
Barbaramh:
Evidently, multiple myeloma can be a series of ups and downs. I am sorry you are experiencing a down. I hope you have found a multiple myeloma support group near you?
My husband is the patient. I go to the support group, not him. I have found it invaluable and I can talk to someone in between doctor appointments about my questions. (Plus, resources like the Myeloma Beacon are amazing. The forums have helped me so much.)
I hope the Revlimid will have a long lasting effect on you. Please keep us posted.
Evidently, multiple myeloma can be a series of ups and downs. I am sorry you are experiencing a down. I hope you have found a multiple myeloma support group near you?
My husband is the patient. I go to the support group, not him. I have found it invaluable and I can talk to someone in between doctor appointments about my questions. (Plus, resources like the Myeloma Beacon are amazing. The forums have helped me so much.)
I hope the Revlimid will have a long lasting effect on you. Please keep us posted.
Re: About my multiple myeloma journey so far
I now have more to add about my journey with multiple myeloma. When I last posted, I was going to add Revlimid at 25 mg to my current treatment plan of Velcade and dex 3 weeks out of 4. I have just finished my first go at Revlimid at day 20 and saw the doctor today. My side effects from Revlimid were pretty awful but short of the worst, no blood clots.
Last week, week 3, was the week from hell. I had every stomach upset possible, diarrhea and constipation, lightheadedness, edema that was so bad that my ankles totally disappeared from view, fatigue, tremors, coughing, bronchitis; I think that was most of them. I saw the oncologist today and we agreed that the Revlimid at 25 mg was just too much. The first 2 weeks were totally without any side effects, but they all backed up on week 3. I now have a Medrol pack, and back on HCTZ to help me urinate some of the extra fluid out of my system. We are going to take a Revlimid holiday for the month of June and may start again in July at 10 mg. Blood was drawn today to test the kappa and lambda light chains this week to see if Revlimid actually did some good. If so, we go to Plan B. If not, we have to think of something else.
Today was one of my regular Velcade and dex days. I have blood drawn each day that I go for treatment and can get to see the CBC immediately. Today it showed that my red blood count dropped low enough to need Procrit, which I also started today.
I know that I am very lucky to have a fantastic oncologist who sees "Barbara" when I come in and not the disease. The infusion lab is only down the hall and the chemo nurses have been there each at least for more than a decade. Every patient gets a hug coming in and a hug going out. I feel cared for by my physicians (oncologist is part of the medical practice I've gone to for years) and know that I am always given enough time to share my thoughts and concerns.
My lambda light chains were at 22,000 when I was first diagnosed in January 2015. The doctor said that was "crazy high" but at the time I knew almost nothing about multiple myeloma. Now I realize how crazy that number was. On Velcade and dex, they were forced down to 5,000 before the myeloma fought back. I actually hope that the Revlimid did some good so we can continue later this summer with a lower dose.
Thanks for allowing me to share this next phase of my journey. I am a 76-year old woman who just retired from my latest position as a lobbyist in the state capital in Maryland. Prior to that, I was an elected State Senator for nearly 20 years. I have a lot of things I want to do in my retirement and hope that I get the chance to do them.
Last week, week 3, was the week from hell. I had every stomach upset possible, diarrhea and constipation, lightheadedness, edema that was so bad that my ankles totally disappeared from view, fatigue, tremors, coughing, bronchitis; I think that was most of them. I saw the oncologist today and we agreed that the Revlimid at 25 mg was just too much. The first 2 weeks were totally without any side effects, but they all backed up on week 3. I now have a Medrol pack, and back on HCTZ to help me urinate some of the extra fluid out of my system. We are going to take a Revlimid holiday for the month of June and may start again in July at 10 mg. Blood was drawn today to test the kappa and lambda light chains this week to see if Revlimid actually did some good. If so, we go to Plan B. If not, we have to think of something else.
Today was one of my regular Velcade and dex days. I have blood drawn each day that I go for treatment and can get to see the CBC immediately. Today it showed that my red blood count dropped low enough to need Procrit, which I also started today.
I know that I am very lucky to have a fantastic oncologist who sees "Barbara" when I come in and not the disease. The infusion lab is only down the hall and the chemo nurses have been there each at least for more than a decade. Every patient gets a hug coming in and a hug going out. I feel cared for by my physicians (oncologist is part of the medical practice I've gone to for years) and know that I am always given enough time to share my thoughts and concerns.
My lambda light chains were at 22,000 when I was first diagnosed in January 2015. The doctor said that was "crazy high" but at the time I knew almost nothing about multiple myeloma. Now I realize how crazy that number was. On Velcade and dex, they were forced down to 5,000 before the myeloma fought back. I actually hope that the Revlimid did some good so we can continue later this summer with a lower dose.
Thanks for allowing me to share this next phase of my journey. I am a 76-year old woman who just retired from my latest position as a lobbyist in the state capital in Maryland. Prior to that, I was an elected State Senator for nearly 20 years. I have a lot of things I want to do in my retirement and hope that I get the chance to do them.
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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: About my multiple myeloma journey so far
Hallo Barbara,
I want to add just a little information to your Revlimid journey. When diagnosed in 2010, I received 10 mg Revlimid, but even that was too much. It was reduced to 7.5 mg. and I have been taking it ever since. I have never been in complete remission (or had a stem cell transplant), but it has done a magnificent job of holding the multiple myeloma at bay.
I hope it does the same for you.
Annette
I want to add just a little information to your Revlimid journey. When diagnosed in 2010, I received 10 mg Revlimid, but even that was too much. It was reduced to 7.5 mg. and I have been taking it ever since. I have never been in complete remission (or had a stem cell transplant), but it has done a magnificent job of holding the multiple myeloma at bay.
I hope it does the same for you.
Annette
Re: About my multiple myeloma journey so far
Thanks for that feedback. Although the side effects at 25 mg were horrble, I really responded to the drug well. My IgA dropped by 50% to 0.06 and my lambda light chains dropped from 10,000 to 4900. When I started a year ago they were 22,000.
My oncologist and I have agreed to take a June holiday and then either start Revlimid back again in July at 10 mg or try one of the 3rd generation drugs of the same class. We were both pleased that I responded so well but know that we need to find a tolerable dose.
Still feeling punk but it's all getting better slowly. Thanks again for the readers and the input.
Barbara
My oncologist and I have agreed to take a June holiday and then either start Revlimid back again in July at 10 mg or try one of the 3rd generation drugs of the same class. We were both pleased that I responded so well but know that we need to find a tolerable dose.
Still feeling punk but it's all getting better slowly. Thanks again for the readers and the input.
Barbara
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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: About my multiple myeloma journey so far
A little more good news to go with what my wonderful oncologist called my "poisoning". I'm feeling much better, so we may start on 10 mg in the middle of June. My body totally responded to the Revlimid. My lambda light chains were at 10,000 on Day 1 and by Day 20 they were 4900. My IgA was 1.2 when I started and on Day 20 it was 0.063.
Obviously when we find a dose that I can tolerate, we will stay on the Revlimid. I'm probably not a transplant candidate and would prefer not to go that route anyway, so if Revlimid along with the dex and Velcade keep working, I will keep taking them as long as the side effects are manageable. I have had no side effects at all for a year on dex and Velcade, so that is the basis of the therapy at this point.
I hope everyone gets to find a treatment that works for their form of multiple myeloma AND that everyone finds a specialist / oncologist with whom they have good rapport and who selects the most appropriate treatment for them.
Good luck to all.
Barbara
Obviously when we find a dose that I can tolerate, we will stay on the Revlimid. I'm probably not a transplant candidate and would prefer not to go that route anyway, so if Revlimid along with the dex and Velcade keep working, I will keep taking them as long as the side effects are manageable. I have had no side effects at all for a year on dex and Velcade, so that is the basis of the therapy at this point.
I hope everyone gets to find a treatment that works for their form of multiple myeloma AND that everyone finds a specialist / oncologist with whom they have good rapport and who selects the most appropriate treatment for them.
Good luck to all.
Barbara
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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: About my multiple myeloma journey so far
Another update:
A few weeks ago I felt very weak and strange. My multiple myeloma was behaving just fine, but I was obviously not getting enough oxygen. I fell at home and broke a rib and also began hallucinating.
Thankfully, my oncologist had me taken by ambulance to Hopkins Hospital. I was diagnosed with pneumocystis pneumonia, also known as PCP. It is a fungus-based pneumonia and pretty deadly. My doctor said it is more common in patients with lymphoma and I'm the first with multiple myeloma he has seen.
I was in the hospital for 2 weeks and the first 5 days I was dying. I knew it, and no one refuted my claim. Thanks to the oncologists and other medical personnel there, they refused to give up on me, even when my blood sodium level was weird and my need for oxygen extreme. After 2 weeks there I came home for a week and then got bad nosebleeds, probably from the drying effect on the nasal passages of so much oxygen.
My red blood count is in the basement, but weekly shots of Procrit are helping. We are going to try to resume the Darzalex (daratumumab) on Wednesday.
So all of the time I was worried about multiple myeloma and it wasn't the multiple myeloma that had me dangerously ill, but the pneumonia. The lesson for me was to pay attention to all symptoms and not make assumptions at all.
I have been assured that I will make a good recovery back to where I was before with my energy back. In the meantime, I'm grateful to be alive and especially grateful for my second chance.
Barbara
A few weeks ago I felt very weak and strange. My multiple myeloma was behaving just fine, but I was obviously not getting enough oxygen. I fell at home and broke a rib and also began hallucinating.
Thankfully, my oncologist had me taken by ambulance to Hopkins Hospital. I was diagnosed with pneumocystis pneumonia, also known as PCP. It is a fungus-based pneumonia and pretty deadly. My doctor said it is more common in patients with lymphoma and I'm the first with multiple myeloma he has seen.
I was in the hospital for 2 weeks and the first 5 days I was dying. I knew it, and no one refuted my claim. Thanks to the oncologists and other medical personnel there, they refused to give up on me, even when my blood sodium level was weird and my need for oxygen extreme. After 2 weeks there I came home for a week and then got bad nosebleeds, probably from the drying effect on the nasal passages of so much oxygen.
My red blood count is in the basement, but weekly shots of Procrit are helping. We are going to try to resume the Darzalex (daratumumab) on Wednesday.
So all of the time I was worried about multiple myeloma and it wasn't the multiple myeloma that had me dangerously ill, but the pneumonia. The lesson for me was to pay attention to all symptoms and not make assumptions at all.
I have been assured that I will make a good recovery back to where I was before with my energy back. In the meantime, I'm grateful to be alive and especially grateful for my second chance.
Barbara
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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: About my multiple myeloma journey so far
Barbara,
So glad your experience has ended well. Thanks for reminding all of us how important it is to report every single change and symptom going on. It is too easy to make assumptions.
Wishing you continued improvement!
So glad your experience has ended well. Thanks for reminding all of us how important it is to report every single change and symptom going on. It is too easy to make assumptions.
Wishing you continued improvement!
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Hummingbird
Re: About my multiple myeloma journey so far
Barbara,
Thanks for the update. Glad you survived the PCP!
Thanks for the update. Glad you survived the PCP!
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
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