Hello, this is my first post and it comes at a time I am very nervous. I found out in March, 12 days before my wedding I had multiple myeloma. After years of back pain I finally got a read on a MRI that said I had a large tumor on my spine. After much debate and seeing 5 Dr.s who told me I did not have multiple myeloma, my oncologist believed I had had it and a Bone Marrow Biopsy confirmed (I still have a phone message from my Neuro Surgeon in Charlotte saying "don't worry you DEFINATELY do not have Multiple Myeloma") Nobody in Charlotte would touch the tumor so I had that surgery and reconstruction done at Duke after radiation. Started chemo in July with Rev/Dex/Val combo. I had absolute no side effects accept getting tired a couple of nights. I had a Bone Marrow Biopsy last week and go back to Duke for the results and to set up Stem Cell Nov 1. My initial BMB showed less then 20% myeloma cells and I have no other issues....I am very healthy to the degree I literally have not had a fever since the 80's and have NEVER missed a day of work in my life for being sick.
Now I find out if there are any other factors that could impede my recovery and what comes next. It seems like this never stops. I guess my concerns include:
- Should I get a second opinion. I found an oncologist I trust and the multiple myeloma specialist at Duke has a stellar reputation and I have done exactly what they have told me to do without questions.
- Should I consider pushing for a donor transplant. I have a brother who looks, acts and talks like me. He is healthy and willing. I am healthy and considering the option only because it could be a long term cure...so I have heard?? I know there is a long recovery time and huge risks but if I were not married I would do it. My wife does not want me to take the risk but I see it as a way of getting back some control of my life!!
I am just scared and overwhelmed....waiting for my numbers and to see what is next. I am glad I found this website because the information has been accurate and reassuring at times.
I'll let you know how it goes .... PEACE!
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9 posts
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Hugh Duncan - Name: Hugh Duncan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 19, 2012
- Age at diagnosis: 52
Re: Chemo over now stem cell...donor or not??
Hi Hugh-
I am sorry that you had such a runaround before you finally got a firm answer. But seeking out second opinions is so important when it comes to this disease. So, yes, even though you have a top notch oncologist, what would it hurt to discuss your case with another one? We actually sought out three different oncologists - two of which were myeloma experts.
In regards to an auto v. allo, you will find mixed reactions here. There are those who feel strongly one way or another, but it really is up to you, your wife, and your doctor. After all, it is your body, your health. That said, my husband went the allo route, never had any auto. He completed eight cycles of the Rev/Dex/Vel, then took six weeks off, then had the allo. His sister was a perfect match. An allo is not for every person. His recovery has been difficult, long, and obviously is still ongoing. We are hopeful, but it is tough.
Talk with your oncologist, get a second opinion. Weigh out your options. If you decide to go the allo route, hopefully you find a match. Good luck. Keep us posted.
I am sorry that you had such a runaround before you finally got a firm answer. But seeking out second opinions is so important when it comes to this disease. So, yes, even though you have a top notch oncologist, what would it hurt to discuss your case with another one? We actually sought out three different oncologists - two of which were myeloma experts.
In regards to an auto v. allo, you will find mixed reactions here. There are those who feel strongly one way or another, but it really is up to you, your wife, and your doctor. After all, it is your body, your health. That said, my husband went the allo route, never had any auto. He completed eight cycles of the Rev/Dex/Vel, then took six weeks off, then had the allo. His sister was a perfect match. An allo is not for every person. His recovery has been difficult, long, and obviously is still ongoing. We are hopeful, but it is tough.
Talk with your oncologist, get a second opinion. Weigh out your options. If you decide to go the allo route, hopefully you find a match. Good luck. Keep us posted.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: Chemo over now stem cell...donor or not??
Hi Hugh,
It's great that you're connected with a doctor that you like and trust. There are lots of myeloma variations and it sounds as if your variation is somewhat similar to the myeloma that I was diagnosed with in 2008. I also had a large plasmacytoma which was decreased in size by chemo and then radiated. My counts were relatively low. My brother turned out to be a perfect match for me and I ultimately chose the auto-mini-allo route. You might want to ask your brother to have his blood tested so that you know whether or not he is a match. My brother did this soon after my diagnosis and knowing that this was a possibility was reassuring , even though we didn't ultimately decide until much later.
I have been in remission since my allo and I do not have chronic graft vs host disease.
I feel very blessed but, of course, do not know how I would be doing had I made other choices.
There are more and more drugs and many are predicting that myeloma will become a chronic disease that can be well managed. I think that the hope for a cure with a mini allo has diminished some since I was diagnosed but, of course, that is what we all hope for.
Good luck with your treatment and with the agonizing decisions that are a part of this process.
I'm realizing more and more that with myeloma there is no "right decision"-only a lot of options.
Fortunately, the options are significantly better than they were only a decade or so ago.
Let us know what you decide!
Karen
It's great that you're connected with a doctor that you like and trust. There are lots of myeloma variations and it sounds as if your variation is somewhat similar to the myeloma that I was diagnosed with in 2008. I also had a large plasmacytoma which was decreased in size by chemo and then radiated. My counts were relatively low. My brother turned out to be a perfect match for me and I ultimately chose the auto-mini-allo route. You might want to ask your brother to have his blood tested so that you know whether or not he is a match. My brother did this soon after my diagnosis and knowing that this was a possibility was reassuring , even though we didn't ultimately decide until much later.
I have been in remission since my allo and I do not have chronic graft vs host disease.
I feel very blessed but, of course, do not know how I would be doing had I made other choices.
There are more and more drugs and many are predicting that myeloma will become a chronic disease that can be well managed. I think that the hope for a cure with a mini allo has diminished some since I was diagnosed but, of course, that is what we all hope for.
Good luck with your treatment and with the agonizing decisions that are a part of this process.
I'm realizing more and more that with myeloma there is no "right decision"-only a lot of options.
Fortunately, the options are significantly better than they were only a decade or so ago.
Let us know what you decide!
Karen
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kck
Re: Chemo over now stem cell...donor or not??
Hi Hugh, It is really hard deciding what treatment to have, all of them have their negatives and positives. It is the unknown that is scary. It would be much easier if we knew what side effects we would be getting and whether we will go into remission once trying a treatment. Unfortunately multiple myeloma is so varied and individuals responses to treatment are so varied it is difficult to predict. I have had treatment with various chemicals (Velcade, Dex, Thalidomide) an auto (July 2010 nearly killed me & it didn't work) and a mini-allo (April 2011 am in remission but have GVHD). I will be on medication for the rest of my life, some of them are dealing with issues arising from the auto, some to deal with peripheral neuropathy from the chemo and some are to help with GVHD - I am happy to take them. The most important thing for my family and myself is that I am still alive and kicking (cant kick quite as high as I used to though). The familys decision for me to have the mini-allo was simple because there was no other option and the benefits far outweighed the risks. Getting a second opinion from another myeloma specialist cant hurt. All the best for you and your wife. Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Chemo over now stem cell...donor or not??
Hi Hugh! Congratulations on your wedding! EJ and I just got married, too. On March 31 -- A year and a half after his multiple myeloma diagnosis and less than a year after his SCT. EJ did the auto route for his SCT. I'm not sure allo was even an option for someone like him who does not have any risk factors. He is now 16 months post SCT, and except for his monthly zometa, drug free. He was back to work in 8 weeks, and is now swimming and playing vollyball reguarly. As we've progressed in our journey with multiple myeloma, one thing I've come to appreciate are options. No matter what route you take, there will always be consequenses. We have just been trying to minimize those consequenses to give EJ the best life he can have. An allo is still an option for the future, but right now, I'm appreciative of the quality of life we have together. I just hope and pray that we can keep him well until science catches up. Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Chemo over now stem cell...donor or not??
Hi, I was diagnosed jan 2011. We live in Alaska so we researched for the best multiple myeloma doc and clinic. We decided on the Seattle Cancer Care Alliance and dr. Bensinger. My first treatment was many rounds of chemo and radiation followed by a auto stem cell tp. All was fine and I was on Revlimid for maintenance and zometta for bone strength. I'm like you very healthy no one can believe I have cancer. I am 44. Unfortunately in less than a year small traces were found in my marrow. Luckily at the time dr. Bensinger was heading up a new study that includes a radioactive antibody isotope, mild chemo called fludarabine, full body radiation and allo transplant. None of my sibs matched so they found me a 10 out of 10 match from Germany. In fact I am typing this in my university of Washington bed waiting for my cells. This is very exciting. I am the first person in the world to receive it with multiple myeloma. They have been curing leukemia patients for a few years with it. It is the first time I've been told possible cure. From what I understand this is the only place in the world doing it. This is where bone marrow transplants all started. They have a noble peace prize hear in this field. This treatment may not be for you but I would get your second opinion here. Good luck.
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aleutiansurf - Name: Matt
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 1/12/11
- Age at diagnosis: 42
Re: Chemo over now stem cell...donor or not??
Hi Hugh, Congratulations on your marriage. Dont agonize too much over the decisions that you will make regarding your treatment (although you probably will). Find out what are the options available and what are the risks and benefits of each of these. No treatment is going to be risk free. The decisions we make would be so much easier if we knew what the consequences would be. Unfortunately there are so many different forms of multiple myeloma and different ways patients respond to the different treatments it is hard to say for sure what will happen. The doctors will usually say "this could happen". A second opinion from another myeloma specialist couldn't hurt. In my case the chemotherapy agents didn't work well (vincristine, adriomycin, dexamethasone, thalidomide, cyclophosphamide, Velcade - and they have given me peripheral neuropathy), the auto SCT -June 2010 didn't work (melphalan - nearly killed me) but the mini-allo SCT (April 2011) did. This mini-allo was performed with fludarabine and low intensity total body irradiation (because of my reaction to melphalan) and the doctors were unsure of whether I would even accept the donor cells. I am now in remission but have chronic GVHD. I will be on medication for the rest of my life, some for the neuropathy, some due to the auto and some for the GVHD. I dont mind. The important thing for my family and myself is that I am still alive and kicking (I cant kick quite as high as I used to though). My familys decision for me to have the allo basically came down to the available options, allo or nothing, and the benefits of the allo far outweighed the risks. Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Chemo over now stem cell...donor or not??
Hello Hugh! My husband was diagnosed on January 1 2012, had his first auto STC in June and completed the second of his tandem at the end of September. We live in WNC and our oncologist referred us to a myeloma doc in Greenville, SC at St Francis hospital. We met with him and decided that we trusted him so we didn't pursue a second opinion. His nurse navigator has been a blessing to us as she interprets the lab/biopsy results and provides up with all kinds of tips to keep life as normal as possible. One of the things she shared with us early on was to focus on the trees and not the forest. It is easy to get overwhelmed with everything that may be ahead for us. So we try and focus on just "the next step". We had a complete response after the first transplant and will find out the results of the second one in mid December. At that point, we will start maintenance therapy. For now, he is recovering and doing his best to stay infection free. Good luck with your journey! Follow your instincts and go with a doctor (and staff) that you trust! Laura
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rav4fan - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 1/1/2012
- Age at diagnosis: 56
Re: Chemo over now stem cell...donor or not??
Hello Hugh! First you should be with a myeloma specialist, a physcian who treats LOTS of myleoma. Myeloma is a rare cancer, comprising only 1% of all cancers..so finding an MD who treats many myeloma patients is very key. It sounds like you have done that. I am going to give an outlier opinion. Please take it with a grain of salt. Each person with myeloma has to make very personal decisions about what to do. You have to weigh quality of life (QOL) vs. therapies that are recommended. Only you can decide whether the proposed/recommended therapy gives you the QOL you are seeking. Have you thought about QOL? Having said that. What reasons has your doctor given you for High Dose Chemotherapy (HDT) ? That is the choice you are making. SCT is not therapy. Know that. Ask your M/D. why should you submit to HDT which is very toxic and has very long lasting toxic effects. HDT is the choice you are making therapeutically. SCT in myeloma is NOT therapeutic. So, ask your doctor, what is the objective for enduring HDT that is being proposed as therapy? Lethal toxic doses of chemotherapy is not the best choice, today.. A SCT is what they do AFTER they have given you lethal toxic "therapeutic' doses to rescue you. Are you aware that is the choice you are making? You are opting for highly toxic/lethal chemotherapeutic doses if you do not take those you have no need to be rescued with a SCT. yes, you read that right . If you do not agree to highly toxic/lethal doses of chemo...you do need a SCT. The SCT is not therapy. It is what they do AFTER they give you toxic chemotherapy, to save you. IOW's it is how they manage the severe life-threatening/toxic and lethal therapeutic doses of the chemo that proceeds the SCT. If you do not take those toxic doses you will not need a SCT. SCT is not therapeutic. Right now, you have other therapeutic choices of drugs that do not necessitate a SCT. Know and understand your choices. What you choose is higlhy personal...know the choices and chooose wisely.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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