Pat's Place: Why Should A Myeloma Patient Get A Second Opinion?
I find myself frequently advising multiple myeloma patients to “get a second opinion from a myeloma specialist before making a major therapy decision.”
You might ask, “Why should I bother to get a second opinion?”
My response is: why not get a second opinion from a myeloma specialist?
But I hear plenty of reasons and excuses.
“There isn't a major cancer center near me.”
“I like and trust my doctor, so why not just do what he or she says?”
“My insurance won't pay for a second opinion out of my area.” I hear that one a lot.
I realize not everyone can afford or is physically able to travel to a major cancer center if there isn’t one nearby. I'm not trying to force anything on anyone. But there are lots of options for getting a second opinion, some of which don’t have to cost anything at all.
So I thought it might be helpful to further explain in this column why I think it’s so important to get a second opinion from a myeloma specialist.
First, let me define “myeloma specialist.” In a perfect world, this doctor only sees myeloma patients, period.
And yes, specialists like this do exist. The Mayo Clinic in Rochester, Minnesota, currently has over 20 hematologists who do nothing but treat myeloma and amyloidosis, a related condition. Physicians at the myeloma institute of the University of Arkansas for Medical Sciences do the same. And there are other departments scattered around the country with myeloma specialists.
These docs not only stay on top of the very latest ways of treating myeloma, they are the ones conducting the research. They not only attend the most important myeloma-related conferences, the American Society of Hematology and American Society for Clinical Oncology meetings, every year, but they are the ones regularly giving talks and poster presentations at these meetings.
A fellow myeloma patient recently said in response to that, “What if my doctor doesn't have time to travel to conventions or to do research? That doesn't make him a bad specialist!”
Maybe not, but he’s not going to be up on the latest ways of treating myeloma if he’s not attending these conferences where the latest approaches are being presented.
In an ideal case, every myeloma patient would get a second opinion from one of these very top experts, but if your hematologist or medical oncologist sees anywhere between 15 and 20 myeloma patients at a time, I would say they qualify as a specialist – if and only if they can show you research examples and share personal case studies to back up their recommendations.
If your local doctor isn't willing to work with one or more specialists – or answer your specific questions about how, when, and why to proceed with a given therapy – it is time to find another doctor!
The idea is to gain insight from a true specialist. Seeing only a local oncologist is fine as long as you have a textbook case of myeloma and nothing goes wrong, but myeloma is rarely that simple.
I know of dozens of examples where things are so complicated that even myeloma specialists cannot agree about what to treat with and when.
One obvious situation deals with when smoldering (asymptomatic) myeloma patients should start treatment. Common practice is not to treat until the person develops symptoms and progresses to myeloma. But ongoing research suggests that certain patients who are at particularly high risk of progressing might benefit from early treatment.
I am currently preparing to live another common example myself. What type of maintenance medication(s) should I use once my Revlimid (lenalidomide)-Velcade (bortezomib)-dexamethasone (Decadron) treatment is successfully completed in a month or two?
My medical oncologist doesn't agree with my myeloma specialist. So I need more information.
I have also heard of plenty of patients whose local oncologists clearly don’t know how to treat myeloma.
One patient I know said their local oncologist never suggested any options. Instead, he insisted that a newly diagnosed myeloma patient should get an allogeneic (donor) stem cell transplant. Really? Donor transplants are almost never given to newly diagnosed patients. They are typically saved as a last resort or for patients with unusual circumstances. Shocking!
This is an extreme example. But I have heard a number of similar stories where obvious options were never discussed.
For instance, no mention of Revlimid, Velcade, or both. Or insisting patients get unsedated bone marrow biopsies instead of sedated ones – then shaming them into the procedure because that clinic isn't set up to do sedated biopsies. (I hear that one a lot!)
But more often, the examples are more subtle. No mention of the latest combination therapies. Prescribing the older thalidomide (Thalomid) instead of Revlimid with no explanation. Never a hint that there might be a clinical trial available that fits a patient's needs. (I hear this one the most often.)
Really? Can’t you see why a patient needs to be informed and to seek an opinion from one of the top experts in the field?
Maybe this is a topic for a whole other column, but I firmly believe that you shouldn’t put your life completely in the hands of your doctors. I believe in educating yourself so that you can voice your opinion too about what treatment regimen may be best for you.
I realize that this requires a lot of work and a commitment to keep up with therapy options.
But it is so much easier than it used to be! Tune in to The Myeloma Beacon on a regular basis. Read patient blogs once in a while. It can be as easy as setting up a news alert for articles that mention multiple myeloma – and then reviewing the material from time to time.
Yes, this can require that you spend an hour or so each week to keep up with the latest news and research and to take some time out of your schedule to seek a second opinion at a few key junctures in the course of your disease. But isn't that a small price to pay for something that could add months or years to your or your loved one’s life?
I guess saying I feel strongly about this is an understatement! But I care about my myeloma friends. I only want the best for us. After all, it won't be long until there will be even more treatment options. And an oncologist who doesn't see enough myeloma patients could easily become bogged down and recommend an outdated therapy.
Now you know why it’s so important to get a second opinion from a myeloma specialist. For tips on how to get a second opinion, see one of my Beacon columns that I wrote this summer.
Best of luck to all of us! Until next month, feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Thank you Pat,
I hope every newly diagnosed patient hears your message. My wife, diagnosed in 2003, had a transplant at the local (state) medical univ. on advice from her Onco that she could go to Arkansas or Mayo or JH but they all do the same thing and she would probably be more comfortable staying relatively close to home.
In Dec 2003 she went through the collection process and they collected 6mm cells and put her right into a gruelling transplant procedure, confined to an environmentally secure room for 3 weeks with the worst of all the typical side effects.
About 24 months later, things began to heat up again and we took off on a two day journey to Arkansas. My wife is doing well, but over the past 5 years she has had 4 attempts to collect Stem Cells and has managed to collect enough for 1 transplant. Just last month she prepped for 4 weeks and could not get counts to the necessary level to collect. So we will be starting a new regimen next week.
Things would have been different, had we just travelled to get that second opinion, because "they all may do the same thing" but they certainly don't do it the SAME WAY!
We are indeed blessed to have ended up in a place withoutstanding Docs, nurses, techs, and procedures. By all means --get that second opinion as early as possible.
Thanks again Pat for posting this very important advice. Blessings and good health to all the MM community!
Pat,thanks for another great column. I couldn't agree more. I made doctor change back in August 2011 after about 8 months or so with my original doc who made the dx I thought he was a specialist but over time realized he treated more breast cancer and other forms than myeloma or blood related cancers. And he was old school. Here's what we are going to do and didn't want to discuss or provide options. Fortunately I live in a large city with other very good options and true specialists. My new doc spends a lot of time with me on every visit and is willing to discuss options. Given the complexity and ever changing landscape of this disease having a good specialist and getting more than one opinion couldn't be more crucial.
Hey Pat,
My biopsy only shows 3to 5% involvement. I have no M-spike and have completed the radiation for the myeloma mass in my upper sternum. The free lite test showed my kappa light chains at 5.85 and my ratio at 5.05. My Lambda light chains were normal, but, of couse my ratio was high because of the Kappa numbers. All of my blood work seems to be in the normal range (although on the low side of normal). I am meeting with the specialists shortly but I wonder why I would need to do anything else other than the radiation since my involvement appears to be so low. I have been going to Duke since 2005 and also have a local oncologist. If they both were to offer me a clinical trial which one would you lean towards assuming all other criteria are the same. I have been told that medicare does not pay for drug company trials. Of course Durham NC is about 21/2 hours from Charlotte.
Any thoughts before I meet with the Doc pros?
Thanks for your thoughts,
Bruce Chastine
Hi Pat...I am happy with my medical care to date, but have done a lot of networking and learning on the topic of MM. Just by reading and talking online and in person to other patients, have been able to find out what the wide range of treatments are. Being treated in a cancer centre that includes a bone marrow transplant unit has meant that there are quite a few knowledgeable doctors on staff, and have been treated by several of them by now, in a team approach. I agree that it is the best to have doctors who have the experience of treating myeloma patients.....there is so much to know just about MM, amyloidosis and related conditions. Going forward, should be able to have more intelligent conversations with the specialists! Reading the Beacon has been very helpful in that regard.
Since we've received several inquiries about where to go for a second opinion, we thought it might be helpful to point out that the Beacon has a directory of major U.S. cancer centers:
http://www.myelomabeacon.com/resources/treatment-centers/
As usual, great article with a lot of great points. I agree that a patient should get at least 2 opinions, if at all possible. The problem I think we have as patients is that the large specialty Myeloma Institutions (at least here in the US) do not discuss all treatment options with their patients, just the ones that in their opinion is optimal. You have mentioned previously that a "Total Therapy" type of approach was never discussed with you when you were diagnosed at Mayo. I am sure the benefits of a Mayo type of approach are not discussed with newly diagnosed Auto eligible patients that go to UAMS for a consult either.
Patients are fortunate in 2012 to have sites like the Beacon and your blog, but some patients may go to a top notch, specialty Institution like Mayo or UAMS and not realize other approaches are even available. It is difficult, expensive, etc for some patients to even go to one specialty Instiution for a consult. Even if they can get to one, they are most likely just hearing a treatment plan that is based on that Doctors/Institutions opinions. The large specialty Institutions certainly have advantages over other Institutions, but their unwillingness to discuss all therapy options with patients because they interpret data a certain way, have an opinion on what good quality of life, etc is, is not optimal for patients either.
I think the key -- reflected by Mark's comments -- is to know what questions to ask. I recently shifted care from a one-size-fits-all, sloppy, melodramatic oncologist to an M.D., Ph.D. oncologist at a large cancer center, and I like him. I like him because he looks at the details of my case, understands the nuances of the disease, and has comprehensive knowledge of current and future treatments. And while he recommended 4 cycles VRD followed by an immediate ASCT, upon further questioning he acknowledged the limitations and risks of such an approach and completely agreed that there are many other options - including low toxity regimens -- and he also said that I do not need to rush into treatment or an SCT. He also is very thorough in his diagnostics and testing -- which it what we all need for this individualized, variable disease.
Hi, Pat:
An excellent article. The other link in the determination of an appropriate treatment is the personal thought process that puts together various opinions across a broad spectrums of medical philosophies. For instance, as Mark pointed out, with enough research on the Internet and through fellow patient postings on websites such as the Beacon, a patient or caregiver would know in general that UAMS is on the aggresive side and other treatment centers, such as Mayo, are on the conservative end or somewhere in between. Those different opinions do not automatically reconcile with themselves to settle down on a treatment of choice. I would wish there is some guideline that will help a patient or caregiver, with personal prefereces as inputs, to arrive at his or her personal decision. The reality is these guidelines would not be available from the major treatment centers because of their firmly held views of what is the most optimal treatment for their patients.
Ben
I want to thank everyone who is commenting for taking the time to share with us. I learn so much from our readers! Since I am on the road on the way to speak to a support group in South Carolina, I can only respond en-mass to your comments until later this evening. But I did want to directly try and answer Bruce's question about his plasmacytoma. Remember that I'm not a physician, Bruce! But assuming your tumor is isolated, I believe your assessment is correct. Treat with radiation, then wait and watch. If your docs want to do more, THAT IS A PRIME EXAMPLE OF WHEN TO GET A SECOND OPINION! Doesn't mean that further treatment isn't a good way to go. But your docs need to provide you with a pretty good reason why. Make sense? Dan and Mark make great points about needing to know what questions to ask. That is probably my number one goal: To help patients speed up the learning curve in time to ask those questions while it can still make a difference. Good luck to all and thanks for reading! Pat
Pat, your column is always spot on. Great advice. My personal experience involved being referred to Moffitt by a local Hema/Onc who had told me left untreated I could probably last 3 years. But Moffitt diagnosed me as SMM IgG Kappa and said no treatment was recommended when I saw them. They gave the general impression that a lot more than 3 years could be expected. I emailed my blood, SPEP, UPEP, skeletal survey and BMB labs to a contact at CTCA who agreed with Moffitt that no treatment was indicated (no charge for this consultation). I had expected them to offer alternative Tx plans to hold off the disease but I was told they only offer those to help patients survive the chemo or other treatments like radiation. So on my way through Boston last summer I stopped in at Dana Farber for a formal second opinion that my insurance covered. The MM specialist I spoke with congratulated me on seeking a second opinion. I was diagnosed there as MGUS, and given advice to not even enroll in any clinical trials because there was no disease progression and I was low risk for progression. I was told that in the future if I wanted to participate in a trial at DFCI it would be necessary to move to the Boston area from FL. Not a requirement if I stay at Moffitt. All of my decisions were made easier the further I delved into the alternatives.
As I went from facility to facility I became more knowlegable and more willing to challenge diagnostic or treatment options. My primary care doc now is hesitant to order xrays and knows I refuse MRIs with contrast. I understand more about what I read and am well-versed in the current treatment offerings and trials. When you read the blogs here at the Beacon and elsewhere you hear some horror stories. Getting a second opinion helps you to NOT be one of them.
Safe travels Pat.
Hi Pat
Thank You for another great article. You are so right and I have a very good specialist. I am currently SMM and have also seen Dr Landgren. Unfortunately I live too far to participate in an actual treatment trial at NIH. But I am currently taking part in their Natural Peogression study. If and when I do have treatment I may see another specialist at Univ of Chgo. Before I do. Simply because my current specialist is also a Transplant Dr. And insists that a transplant is the way to go. Again I really like, trust and respect him but I am also reading that Dr Landgren and others are starting to challenge that theory. So before I start I might want to see a Dr. That does not personally do transplants. Hopefully not any time soon.
Good luck to al of my Myeloma Siblings
Art
Thanks, guys! I like Moffitt a lot, Kent. Not the biggest and far from perfect. But it has a real family feel to it. Sort of the best of both worlds.
Pat, I agree that all patients should get a second opinion as they should with all serious medical conditions if time and access permit it. Patients have to be aware that their choice of centre and specialist may be biased towards one approach over another based on their experience. The 20 myeloma specialists at the Mayo Clinic will not all agree on the same approach in each individual patient and as you know a great many disagree with Dr. Barlogie's approach in Arkansas. Therefore, there is the need for patients to educate themselves to be able to question their doctors as to why they recommend one treatment over others as options exist at every stage of this disease.
As for yourself, I assume that you have reached a complete remission with RVD as you mention stopping it soon and considering maintenance. The present thought for relapsed disease is if a combination is beneficial but not CR then one carries on with it indefinitely as long as it is working. I am sure that all your readers are thrilled for you and will encourage them to continue the fight .
Hey, Jim-
I haven't heard from you in a while. How are YOU doing? I have not reached CR yet. 0.1 last month after third, 6 week RVD cycle. We are hoping I will be able to again reach CR after two more cycles. You are right about these docs not always being able to agree. No consensus on maintenance at all. If a patient isn't able to reach CR and does continue, I'm guessing the RVD dose would be reduced substantially, right? I don't think I could take full dose RVD indefinitely. I already glow in the dark I'm so full of very, very expensive chemicals!
Hello Pat; thank you for another very useful column. Two or three opinions regarding management of specific MM cases are definitely worthwhile, as all previous commentators agree. I believe it is also useful to understand the specific bias of any specialist one chooses to see. The opinions I received regarding stem cell transplants after initial induction novel agent chemotherapy ranged from transplants being discouraged in general; single or tandem autologous transplants being encouraged; to mini allogeneic combined with autologous transplants being suggested (due to high risk factors). All four opinions reflected the bias of the specialists based on the type of research they personally perform!
In my case I was able to do my own research, and decide on the treatment that best suited me. I am now day 32 after a single autologous stem cell transplant without any complications. I am grateful for the support of the team at the institution I chose, who themselves encouraged me to seek other opinions. Without seeking several consultations and analyzing the opinions I received, I could not have embraced my chosen treatment wholeheartedly. That to me was a big factor leading to my successful procedure. Your own book on stem cell transplants came in quite useful as well; thank you for publishing it!
Therefore I encourage all MM patients to seek out therapeutic options that they themselves can embrace, and trust the team they choose to perform it. Then you can truly believe that it will help keep the disease at bay, which is itself an important variable in the therapeutic success. I agree with you Pat: feel good and keep smiling! Jan
Veterans under care by the VA are allowed to ask for a second opinion, although many aren't aware of this. Granted, the vet will be sent to another VA doctor, but often there will be differences of opinion regarding treatment that can open productive dialog.
Pat's point is well taken, and when it comes to cancer a second opinion ought to be a default part of the diagnosis and treatment strategy plan. Great column, Pat!
While Mayo may have 20 MM specialists. I found getting a consult with one in less than 6 weeks was impossible. I was diagnosed on 2 Sept. Began calling for consults on 12 Sept. Mayo said I could not be seen until the middle of November at the earliest by a MM specialist. I was able to schedule a a consult only with the nephrologist who treats MM patients but was not a board certified hematologist/oncologist. I was unimpressed with the consult.
Thank you for contributing, doctor! Very interesting. Bob, always great to learn about how the VA works. And Suzie, sorry your consult was disappointing. But at least you tried! And if we don't get the service or help we think we need, KEEP TRYING!
Suzierose makes a good point. I was first diagnosed by my kidney doctor in IA who called Mayo and got me an appointment with MM doc in less than ten days. That is the point. You need a doctor to make that appointment if you want to get in quickly. If you see a doctor that won't do that for you, you go to the bottom of the list. Basically your local doctor has screwed you out of a time appropriate consult.
The more I learn about MM, (had auto/four years ago, still sCR with no chemo/drugs since transplant), the more I am learning that the doctor needs to understand your specifics of MM and treat accordingly. Every person is unique in the treatment they need.
Hi Pat,
This is my first time on this site. My mother was diagnosed with MM by a local heme/onc less than two weeks ago. I am writing to ask what you know about a physician she is scheduled to see for the first time this Friday at 8AM. His name is Guido Tricot. He just came to the U of Iowa a month or so ago evidently. He originally hails from Belgium but has spent significant time at U of Arkansas and more recently in Utah. What, if anything, can you share with me about him? May be the bigger question is your opinion on transplant. Not necessarily IF to do it, but WHEN in considering the (hopefully)many years my mother has ahead. Please share your thoughts as I try to get my arms around this. Thx in advance!
Jason,
Sorry to hear about your Mother. Dr. Tricot is a well known Myeloma specialist. Here is a link to a video series on Youtube. It is a good video series for a newly diagnosed patients. It gets into his thoughts on Myeloma therapy. He is a proponent of upfront Tandem Auto transplants for patients that are healthy enough for the procedure. I have never met him but I have read patients blogs and posts in forums and they all give him great reviews.
http://www.youtube.com/watch?v=Kdng2LhuFaU&feature=related
Here is a link to an outstanding piece he wrote in 2007. It is about testing techniques - not many patients that have had Myeloma for some time would be that familiar with what he is discussing. It is important for patients to understand what the tests mean and what the current definition of CR actually means in Myeloma.
http://www.clinicaladvances.com/article_pdfs/ho-article-200702-tricot.pdf
Hope that helps.
Mark
Dear Pat
Thank you for the useful article.
My doctor wonted me to get an allogeneic (donor) stem cell transplant shortly after i was diagnosed to have high risk MM.
And also the doctor never told me about clinical trial available that might fit my needs.
When i got a second opinion i learned that i should not get the trasplant and i also got the information about a clinical trial that might fit my needs.
It is recommended to get a second opinion .sometimes it save our life.
Thank you
ITZHAK
Thanks for helping Jason, Mark. Much appreciated. And how great is it to hear from Itzhak, all the way from Isreal?
Hi JC,
The appointment was made by the local hem/onc. They were incredulous to learn it was with the nephrologist. I found the entire process, using them as a referral, unsatisfactory. I called the local hem/onc back and noted that the MD was not MM specialist but a nephrologist that treats MM patients. They were unable to move the consult also to a more recent date. So heading to top of list based on your local hem/onc is not necessarily so. Guess you could also say, Mayo is in that much demand or that the local hem/onc simply do not have that type clout given how 'premiere' Mayo is.
I only went to the Mayo consult because it was still at the premiere, for over 50 years MM institution in the country I made my core objective to learn about harvesting and storing stem cells for future transplant, which Mayo is one of the few places that will store stem cells inperpetuity. I also made it a key point to learn why a nephrologist was being scheduled with appointments for MM consults.
What I learned is that the MM specialists at Mayo allowed this nephrologist to treat MM patients to lighten their load of patients due to their heavy travel schedule of conferences and meetings as experts. IOW's the nephrologist has 'on the job training' having never been board certified in hem/onc. Thus, I was unimpressed. Now, had there been significant kidney issues I may have felt differently, but the only CRAB symptom I had was the B . The nephrologist also told me I was high risk based on TP53 and that I should not worry about ONJ from biphosphonates, as the chances from death from biphosphates causing a secondary malignancy were lower than my expiring first from MM. THAT's when I inquired about HIS background, I had previously read about.
My local hem/onc's were shocked to learn that I was high risk based on Mayo's nephrologist. I was shocked to learn that neither them nor him knew the latest ASH or ASCO data. Soooooo, I skeedaddled up out there as fast as a could. I took it as a message from GOD....thank goodness, I had contacted NIH on Sept 9th as I knew at that point what the new innovative therapies were for the newly diagnosed.
My primary feeling after leaving Mayo, was how could I trust a nephrologist who only has to learn one friggin organ and his on the job training...vs. a hematologist/oncologist where the board certification encompasses a huge area of blood dyscrasias PLUS innumberable cancers....how in the world could that be comparable, no matter what his on the job clinical training was. The difference alone in the scope of knowledge is simply vast. Or perhaps I should say, my true second consult from Mayo was with Rajkumar, via webcast during his pressenations at ASH and ASCO in 2010.
So, my real point is second consults are definitely something everyone wants to do. But also do some homework and always always always be your own patient advocate. Even if an institution has a premiere reputation know the background of the individual you get scheduled with as well.
Overall, great advice PAT!!
Thanks for taking the time to share your disappointing experience, Suzie. Yes, once again, knowledge is power. Requesting a specific Mayo Clinic doc may have helped. That assumes you would know which one to request! My wife made phone calls and follow-up to people in order to get in quickly. Ended up speaking with Dr. Kyle himself from his home! I was at Mayo five days later. Now, this type of thing wouldn't be difficult for me now... I know a number of these doctors. But at the time, I knew no one. No one! But a friend at work knew someone who knew Dr. Kyle... Should we need to do this type of thing? NO! Is it fair? NO! Welcome to the world of cancer care! Want exceptional care? Sometimes you need to dig a little and work at it. Another way to proceed would have been to "work" local doctors to get them to make some calls... And Suzie, what a great point about the webcast questions! A perfect example of an affordable, (free!) way to get some reassurance. There are phone and webcasts about myeloma therapies practically every week which allow questions...
Second, third, and... I have often recommended that in the consultation process patients need apples to oranges consultations. If they are looking for a no transplant vs transplant vs tandem then they should go to places that take that point of view and compare each of the presentations. Many of my newly diagnosed post focus on what they do if there is relapse. Teasing out their expertise and game plan, professional arrogance and yes, whether they attend conferences. If they don't have time to keep up with the latest data on myeloma except through a journal, then they really don't have time to treat us. Journal articles often have a limited word count, graphics, etc. The conferences provide a full presentation of the findings in the research with a Q&A. Do they pick up the phone and have a conversation with another doctor who is a specialist? These are all things I want to know. Are they an island or part of a team? In the end, what I recommend or suggest is all I can do. Each patient/caregiver has to migrate through their own personal situation as best they can.
With an incurable cancer, an incompetent physician can readily deliver a sloppy diagnosis or prescribe over-aggressive treatment with no fear of liability.
I also find myself annoyed by various web videos of MM specialists -- including Guido Tricot -- who readily tout tandem transplants: Sure, if I was an infectious disease specialist, I could recommend amputation for treating a leg wound -- but it would certainly not be in the best interest of most patients.
Be VERY careful when hearing a physician's justification for a procedure. Don't be a cell biology experiment -- without good reason.
"but it would certainly not be in the best interest of most patients."
I think the comment should be directed towards treatments on both ends of the spectrum - overly timid leading to resistance and overly aggressive leading to severe side effects. Both treatments have their places. The problems arise when they are applied incorrectly.
But I do agree that we cannot overstate the importance of careful questioning when presented with justifications for proposed treatment procedures.
Hi Pat,
Thanks for a great article. Points well taken. Hope you are doing well and wishing you the best on your future. Sue say "Hi" . Take care of yourself. Oh when are you coming back to MN?
Take care ... Regards
Mike
Mark- thanks for the information. I will certainly take a look at it!
Lori-
Your comment reminds me that very little info exists for patients about treatment philosophies from center to center. Unless you are deeply involved with all of this like you or me, how would a newly diagnosed patient or caregiver know? All facility websites look and sound the same. Check it out! All we can do is keep writing, baby!
Right on target, Pat! Even after my daignosis at a major MM center, I sought second and third opinions. I was uninitiated to the MM world and I wanted to make sure that I was making a decision that was in my best interest, as much as I could determine it, anyway. I felt that I was on solid ground by deciding to stay at my diagnosing treatment center, and I plunged in with both feet. Like you, my VRD maintenance treatment ends in several months and I am trying to figure out what the next step will be. Stay strong and keep up the fantastic work!
Thanks, Sean!
Hello Pat,
My wife was diagnosed with smoldering MM in October 2010 and went a year without treatment before recently being classified as stage II and receiving 4 cycles of VRD. She has just completed harvesting and was being scheduled for a SCT in May. After a lot of soul searching she has decided to put off the SCT because she feels she doesn't want to go through something that will make her sick when she feels fine, I think she's afraid and I don't blame her. My wife is a glass is half full person but was miserable even going through harvesting, she just can't get her mind around having a SCT.
We have enjoyed following your story, read every chapter and would like to know if you had to it over would you have had a SCT right away or would have still waited. From what I have read only about 50% of people with MM choose to have a SCT but I have read very little of their stories. The medical industry seems very focused on SCT, yet the results seem to be inconclusive.
We wish you the best.
I understand why your wife might be afraid, John. I was. Did she harvest? Pre-harvesting made it a lot easier for me when the time came to transplant. One less procedure to endure back-to-back--and stem cells were probably in better shape.
New studies show waiting until first relapse does not hurt chances for success. Did waiting contribute to my "failed" SCT? Who knows? But I feel good about my decision. Good luck!
I'm new to MM, ISS Stage 2 and in my third round of RVD induction therapy. I got a 2nd and 3rd opinion at mdAnderson and Moffitt. In researching results of clinical trials, I noticed that most treatments were on specific days like 1, 4, 8, 11 for Velcade etc, but all my treatments for Velcade and Dexamythesome are 7 days apart. In addition, my Revlimid treatments were changed from 21 days to 5 days on and 2 days off because of low CBC.
It appears I've already reached plateau for IgG, free kappa light chains, and M-spike. Not good! I'm wondering if there are any articles that compare timing of treatments, particularly for RVD. I have an appointment at Moffitt in 2 weeks to discuss SCT. My bones are riddled with lesions, which I know doesn't bode well for long remission. Moffitt wants me to explore Allogeneic vs Autologous. My concern would be complications that might not make me eligible for potential treatment breakthroughs in the future. Any comments are appreciated.
Debbie-
Way to early to be so pessimistic, girl! I have a friend who had an auto SCT with 20% plasma cells in her bone marrow. Odds didn't look good for success. She just celebrated four years of full remission! Good luck!
This is good stuff....On April 23 i was in a session of physical therapy for overuse of muscle/muscle pull - self diagnosed and "confirmed" by an orthopedic doc with x rays. I thought I would die on the table as I could not lie down..and had not been able to for several weeks...could not get appointment with orthopedic for 3 more days to get MRI so I went to the ER and begged for MRI. finally got one...2 lesions were discovered and by the next morning was face to face with my hematologist (for anemia) who would soon be my oncologist..he told me then he suspected MM. I have just completed my second cycle of treatments...RVD....and Zometa...2 more to go. will have kyphoplasty for the two spots on my spine in a couple of days. All that to say..this can be a shocking diagnosis....but God is good. So many things have prepared me for this diagnosis and treatment. This site is a new discovery for me and it is terrific...I may order your book this week....interesting thing is I am an associate pastor at a church in Nashville. there were 9 of us on staff when I came 24 years ago. I am the third of the nine to be diagnosed with MM!! That seems like incredible odds!! Does anyone know of other situations where such huge percentage of persons at one place, one family, one anything that have contracted the disease? Unbelievable but no legitimate connection or cause that would be predictable...
Keep up the good work and good recovery....
Sounds a lot like my early myeloma days. I was in pretty bad shape - and in shock over diagnosis, too. I even wrote a book about it. You have a great attitude! Good luck!
HI Rus!!
you write:
"in Nashville. there were 9 of us on staff when I came 24 years ago. I am the third of the nine to be diagnosed with MM!! That seems like incredible odds!"
Wow, those are incredible odds. Sounds like it might be a great study for a researcher to look into. What are the demographics of the church as relates to the MM patient population, in terms of age/race that is similiar to those who typically comprise MM patients, do you know?
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