Greetings from the Mayo Clinic in Rochester Minnesota USA, where I am on Day 7 post transplant. I hope anyone searching for these topics -- nonsecretory multiple myeloma, plasmacytoma, femoral implant surgery, mutation T(11,14), pleural effusion, thoracentesis, CyBorD chemo with minimal side effects, high dose melphalan, autologous stem cell transplant (SCT) as an outpatient, Mayo Clinic -- will find this post and my user name. I will get right to it, though that may require a few separate posts.
User name - I am male and my first name is Dana. The neighbor kids were polite and called me Mister Dana, my wife Miss Lois, etc.
Medical history - Great health. Normal anatomy except horseshoe kidney birth defect. I build up kidney stones that do not descend. First real surgery of my life was at age 65, a PNL to pull stones through my back.
Symptoms - In August 2013 I hurt my back at waist level pushing on something in the garden. Assuming a pulled muscle, I put up with it, although the pain was very bad upon getting out of bed each morning. In November I "reinjured" it and went to the doctor. By then I had other strange sensations to describe. Scans showed a compression fracture of L2 vertebra. Looked like multiple myeloma to my doctor but I had no M-spike in my blood proteins. Is it multiple myeloma or metastatic cancer? A whole body CT scan found no primary tumors, but did spot a number of problems, including a growth on the outside of my lower spine. It was biopsied, turned out to be plasma cells, so in a few days I went from "pulled muscle" to "nonsecretory multiple myeloma".
All this happened in the few days before and after Thanksgiving holiday. We thought we a day off but a phone call from my doctor changed all that.
[to be continued].
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Nonsecretory multiple myeloma & other novel things
Surgery - Thursday Dec 5th my doc called. The radiologists said the lytic bone lesion in my right femur was dangerous and I could fracture my leg at any time. If that happened I would be a pathetic mess.
The next day I visited an orthopedic surgeon, and on Monday Dec 9th I had surgery to drive an "intramedullary nail" (metal bar) down the inside of my marrow chamber from the neck of the femur almost to the knee. A crossmember anchors it to the head of the femur at the top; bone screws at the bottom.
Due to the surgery and my vertebral fracture, I remained at North Memorial Hospital until Friday the 13th, when I shuffled home with a walker and pain pills.
If you have to be in a hospital, the joint replacement floor is a good place. If you ever have work done on your leg, be prepared for several months of ridiculous swelling, even if the surgery went fine.
The next day I visited an orthopedic surgeon, and on Monday Dec 9th I had surgery to drive an "intramedullary nail" (metal bar) down the inside of my marrow chamber from the neck of the femur almost to the knee. A crossmember anchors it to the head of the femur at the top; bone screws at the bottom.
Due to the surgery and my vertebral fracture, I remained at North Memorial Hospital until Friday the 13th, when I shuffled home with a walker and pain pills.
If you have to be in a hospital, the joint replacement floor is a good place. If you ever have work done on your leg, be prepared for several months of ridiculous swelling, even if the surgery went fine.
Last edited by Mister Dana on Fri Jul 18, 2014 1:16 pm, edited 1 time in total.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Nonsecretory multiple myeloma & other novel things
Pathology - The cancer cells from my plasmacytoma and those scraped out of my leg would be found to agree, except the bone lesion contained some that were especially big and rapidly dividing. I can't imagine how bad things would be if I had a fracture before I got the surgery
Oncology - The following Monday, days short of my 67th birthday, I met my new oncologist, Dr T. She is a very proactive, positive and caring doctor. I had a PET/CT scan that showed multiple myeloma spread through my spine, ribs, and a few spots on my pelvis. It also showed that the pleural effusion in my left chest had grown alarmingly since the first CT scan. So, when I finished my first bone marrow biopsy, I went to a different room for my first thoracentesis procedure to drain fluid out via a big needle in my back. I've had BMB three times now and never thought it was any big deal. The thora is a different story, but I won't go into that unless someone wants me to.
Pleural effusion mystery - PE is when fluid builds up between the inner and outer membranes around the lung. No cause for my problem was seen on my PET scan, but it has to be due to some unseen plasma cell issue in my chest. The fluid they sucked out of me was clear of any cancer cells or infection. So that is the mystery - benign pleural effusion. I had four thoracentesis procedures in two months, and there is still some fluid low in my left chest.
Cytogenetics - My BMB sample went to pathology, then out for cytogenetic analysis via the FISH method. They found the mutation called translocation(11,14), which is not the worst to have. But I also had some crazy mutations in some of the multiple myeloma cells that demoted me to a poorer prognosis. Dr T called the Mayo Clinic for their advice, and that guided my plan of chemotherapy.
My next topic will be one that most of us know about: months of "induction" chemotherapy
Oncology - The following Monday, days short of my 67th birthday, I met my new oncologist, Dr T. She is a very proactive, positive and caring doctor. I had a PET/CT scan that showed multiple myeloma spread through my spine, ribs, and a few spots on my pelvis. It also showed that the pleural effusion in my left chest had grown alarmingly since the first CT scan. So, when I finished my first bone marrow biopsy, I went to a different room for my first thoracentesis procedure to drain fluid out via a big needle in my back. I've had BMB three times now and never thought it was any big deal. The thora is a different story, but I won't go into that unless someone wants me to.
Pleural effusion mystery - PE is when fluid builds up between the inner and outer membranes around the lung. No cause for my problem was seen on my PET scan, but it has to be due to some unseen plasma cell issue in my chest. The fluid they sucked out of me was clear of any cancer cells or infection. So that is the mystery - benign pleural effusion. I had four thoracentesis procedures in two months, and there is still some fluid low in my left chest.
Cytogenetics - My BMB sample went to pathology, then out for cytogenetic analysis via the FISH method. They found the mutation called translocation(11,14), which is not the worst to have. But I also had some crazy mutations in some of the multiple myeloma cells that demoted me to a poorer prognosis. Dr T called the Mayo Clinic for their advice, and that guided my plan of chemotherapy.
My next topic will be one that most of us know about: months of "induction" chemotherapy
Last edited by Mister Dana on Fri Jul 18, 2014 1:17 pm, edited 1 time in total.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Nonsecretory multiple myeloma & other novel things
Mister Dana - I am only MGUS and just now trying to learn about all this, but it sounds like you have learned and experienced a lot in a short time, unfortunately. Thank you for introducing yourself. Please keep sharing.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Nonsecretory multiple myeloma & other novel things
Welcome to the forum, Mister Dana, and thank you for sharing so much information about your particular "myeloma story." What you've written -- and will write -- should be helpful to many others here in the forum.
Re: Nonsecretory multiple myeloma & other novel things
This post will complete the first chapter in my story ..
Staging - I was stage 3 on the SD scale based on bone damage alone. But my beta-2 microgobulin was normal, meaning that I was not yet badly overrun with malignant plasma cells, hence stage 1 on the ISS scale. So my official diagnosis is: "Stage 1 Nonsecretory lambda light chain multiple myeloma with intermediate risk cytogenetics".
Chemotherapy - Dr T consulted with Mayo Clinic and treated me as they would: weekly "CyBorD": oral cyclophosphamide and dexamethasone, and an IV "push" of Velcade (bortezomib). This started mid-January. My back seemed to heal itself. By April first, my plasma cell count was back to normal with no sign of the malignant DNA in my follow-up marrow biopsy. PET scan showed no active bone lesions and some of the old ones were starting to heal. (I had also been taking Zometa bone infusions monthly.)
Chemo side effects - The day after chemo, the dex made me very energetic, gave me a night of insomnia. Something made that diarrhea day, so I got a lot done but only near home! When that wore off, I noticed other things: swollen ankles, trouble reading fine print, and shortness of breath. This was all pretty mild. My blood counts remained at the low end of normal, and it was safe for me to live life normally: shopping, seeing friends and family, going to restaurants, etc. Except for a limp from a post-surgery case of myositis ossificans, I looked normal, too. I realize I was lucky, and a lot of folks have a hard time with their induction chemo.
Now it is on to Chapter Two, stem cell transplant as an outpatient of all things. I may need to post that in one of the other forums. Just look for "Mister Dana" ...
Staging - I was stage 3 on the SD scale based on bone damage alone. But my beta-2 microgobulin was normal, meaning that I was not yet badly overrun with malignant plasma cells, hence stage 1 on the ISS scale. So my official diagnosis is: "Stage 1 Nonsecretory lambda light chain multiple myeloma with intermediate risk cytogenetics".
Chemotherapy - Dr T consulted with Mayo Clinic and treated me as they would: weekly "CyBorD": oral cyclophosphamide and dexamethasone, and an IV "push" of Velcade (bortezomib). This started mid-January. My back seemed to heal itself. By April first, my plasma cell count was back to normal with no sign of the malignant DNA in my follow-up marrow biopsy. PET scan showed no active bone lesions and some of the old ones were starting to heal. (I had also been taking Zometa bone infusions monthly.)
Chemo side effects - The day after chemo, the dex made me very energetic, gave me a night of insomnia. Something made that diarrhea day, so I got a lot done but only near home! When that wore off, I noticed other things: swollen ankles, trouble reading fine print, and shortness of breath. This was all pretty mild. My blood counts remained at the low end of normal, and it was safe for me to live life normally: shopping, seeing friends and family, going to restaurants, etc. Except for a limp from a post-surgery case of myositis ossificans, I looked normal, too. I realize I was lucky, and a lot of folks have a hard time with their induction chemo.
Now it is on to Chapter Two, stem cell transplant as an outpatient of all things. I may need to post that in one of the other forums. Just look for "Mister Dana" ...
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Nonsecretory multiple myeloma & other novel things
Hi Mister Dana,
I see you haven't posted in a couple of days and that you're currently doing a stem cell transplant. I just wanted to say that I hope you're doing okay and I appreciate the information you've posted about your diagnosis and treatment so far.
Good luck!
I see you haven't posted in a couple of days and that you're currently doing a stem cell transplant. I just wanted to say that I hope you're doing okay and I appreciate the information you've posted about your diagnosis and treatment so far.
Good luck!
Re: Nonsecretory multiple myeloma & other novel things
I am registered, I am logged in, I am trying to correct a misspelling in my own post, and the forum won't let me do that. What I meant to say is that I got the limp from myositis ossificans, which is a calcium deposit in the thigh muscle right where the surgery took place.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Nonsecretory multiple myeloma & other novel things
Hi Mister Dana,
If you're a registered forum member, you can edit forum postings that you make for about a day or two after they're originally made. After that, only forum administrators can edit the postings.
We've changed the reference to "myositis" in your earlier posting so that it now reads "myositis ossificans."
Hope all is going well with your transplant. Thanks again for sharing with everyone the information you've provided about your diagnosis and treatment.
If you're a registered forum member, you can edit forum postings that you make for about a day or two after they're originally made. After that, only forum administrators can edit the postings.
We've changed the reference to "myositis" in your earlier posting so that it now reads "myositis ossificans."
Hope all is going well with your transplant. Thanks again for sharing with everyone the information you've provided about your diagnosis and treatment.
Re: Nonsecretory multiple myeloma & other novel things
This is the end of Chapter One. Chapter Two is my transplant diary, written while I was at Mayo Clinic. It is called "Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)" and is found at this link:
https://myelomabeacon.org/forum/mister-dana-transplant-mayo-clinic-outpatient-t3698.html
https://myelomabeacon.org/forum/mister-dana-transplant-mayo-clinic-outpatient-t3698.html
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
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