Pat’s Place: Refractory To Revlimid & Velcade - What’s Next?
Earlier this month, I admitted something that wasn’t easy for me: I’m refractory to both Revlimid and Velcade.
So what’s the big deal? There are plenty of other drugs I haven’t tried.
True, my outlook isn’t as dire as it would have been three or four years ago. I recall attending a presentation at the American Society of Hematology’s 2011 annual meeting in San Diego. Pomalyst and Kyprolis weren’t approved yet by the U.S. Food and Drug Administration. But a panel of international myeloma experts, including the IMF’s Dr. Brian Durie, French hematologist Dr. Philippe Moreau, and M.D Anderson’s Dr. Robert Orlowski, was very hopeful.
The panel agreed that the median life expectancy for a patient who had become refractory to Revlimid and Velcade was eight months.
Eight months! That event changed my life forever. Ever since, I have been dreading the day that I would become refractory to Revlimid and Velcade.
The hopeful part? Those statistics the experts quoted included all myeloma patients, young and old, and with and without comorbidities. They were also prepared pre-Pomalyst and Kyprolis. Still, they got my attention!
The doctors excitedly shared how patients refractory to Revlimid (lenalidomide) and Velcade (bortezomib) had close to a 50 percent chance of responding to one or the other drug. I took that to mean that one of them was likely to work for me.
They also quoted statistics from early studies that showed Pomalyst (pomalidomide; Imnovid) plus dexamethasone (Decadron), or Kyprolis (carfilzomib) plus dex, worked for between 10 and 13 months in patients refractory to Revlimid and Velcade. That’s an eternity in oncology terms! But not if you’re a patient!
I understand that some think I’m a bit too pessimistic and dark. I’ll accept that. But do the math: 13 months plus 8 months is less than two years.
Do you understand now why I have been hung up on the two-year thing for so long? If someone is talking about something more than two years away, I immediately zone out. I’m not interested!
Do I hope to, and expect to, live longer than two years? Heck yes! Those overall survival data I quoted above are medians. This means half of patients in my situation will live longer than 21 months. But it also means half will die sooner.
Now that I’ve scared the bejesus out of you, here are a few things to remember:
- A positive attitude is important. But being realistic doesn’t measurably shorten your life. Sometimes I think that many of us feel it’s bad karma to think realistic or negative thoughts. Not so! There are even studies proving it. What can hurt us is being in denial to the point that we don’t get to the emergency room soon enough if we’re sick, don’t report serious side effects to our doctors, or put off important therapy discussions because we’re afraid of what the doctor may tell us.
- The immunotherapy cavalry is on the way! However, the question remains: will a large enough selection be available for me and my fellow salvage therapy patients before it’s too late?
- We aren’t statistics! I’ve got a shot to live for a lot longer than 21 months. But it will take some luck.
- Allogeneic (donor) stem cell transplants are making a myeloma comeback. They are safer, graft-versus-host disease is being minimized, and there is even a chance of a ten-year or longer remission. Dare I say cure?
Twenty-one months seem like a long time if my quality of life is pretty good.
What concerns me is why discussing topics like this are taboo? Since when is admitting reality a negative? Shouldn’t we be facing our challenges head on and battling like heck — unless we’re tired and don’t want to. Blaming a patient for not being positive enough – or not fighting hard enough – is a pet peeve of mine. It isn’t fair.
To me, being there to support others in the myeloma community is what makes life worth living. I wouldn’t trade a minute of my crazy life with cancer! The friends I’ve made, finding a purpose for living, discovering a love for writing.
Multiple myeloma sucks! But I’ve learned so much about myself and others. We’re a lot tougher than I ever dreamed people could be.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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Pat, I always look forward to your columns as you hit so many of my thoughts.
Here's to hanging tough, being totally realistic (even if our loved ones don't want to know), and embracing life to the fullest!
I understand ... non MM people do not want to hear that just because you are CR this month, it could change drastically at a moment's notice. I always say I am always 30 days or less away from a transplant if my numbers change. I'm a very positive person, but I am also realistic. I even have people tell me they don't think I have MM anymore. Taboo to talk realistically about your health? We will listen and understand. Just keep on talking, Pat, we're here for you!
Thank you, Pat, for your downright honesty. It is refreshing in a world that denies and hides its head in the sand and looks on with horror when I speak in honest words. I wish you luck in your search for a treatment that works for you.
I am at that point. I had a call from my clinical trial coordinator yesterday. 'The Myeloma is progressing,' she said, 'Bence Jones protein has risen to 0.3', not a high number I know, but up from the last reading nevertheless. Where to now? I am on Pomalyst and dex (since December last year), have gone the full course with Revlimid and Velcade (3 times with Velcade). What is left for me?
I have been called in to see my haematologist on Thursday (in 2 days). What is she going to say? Will she take me off the trial? I do not know.
I am remaining positive, but my husband is suffering. How do I help him?
Reading The Beacon is good for me, I feel I am amongst my family. We are all in the same boat. Keep positive Pat.
Thanks all for not minding my candor. It helps me to write about it -- glad if it helps you, too!
My husband had multiple myeloma. He fought for 14 1/2 years. He passed away on May 22nd from a plasmacytoma that was between his duodenum and liver. They did several procedures on him because of bleeding. Several branches of the duodenum were embolized, but eventually there was nothing more that could be done. We didn't know plasmacytoma tumors could happen. The myeloma gets smart and comes out of the bone to cause these plasmacytomas. These are very bloody tumors and grow quickly.
I'm leaving this comment because I'm not sure if patients are aware of them. The liver enzymes were high and that led to tests that showed the tumor. My husband was 53 years old. We lived our lives and he worked full time. He had 3 BMT's, was on different treatments, and did very well until January. He was such a fighter, never complained, always upbeat and smiling.
Thank You,
Ellie Vanderpool
Pat - Yours was the first column I read on The Beacon shortly after I was diagnosed two and a half years ago. While we appear to be at opposite ends of the spectrum in the treatment of our disease, I have benefited immensely from your insight, candor, and willingness to say those things that many shy away from. Warriors like you deserve to find that treatment that results in lasting remission. Best of luck in that search!
Thanks Pat for a realistic yet somehow upbeat column. You are so good at looking at all of the treatment issues, and I have learned a lot from reading your work. It has always bothered me that survivals are often measured in months, not years, but I guess it is what it is sometimes. Hoping for many more years for all of us actually!
Hello Pat, My Mom has had multiple myeloma now since 2006. When she was diagnosed, they told her she had 4 years. Here it is 2014 and at our last visit, they said that we are out of options and Mom only has a month left. Her multiple myeloma has came back very aggressively and she's not responding to the chemo. Just a few months ago they told us, "The good thing is, we still have a lot of options." Boy do we feel cheated!
We have tried a few other chemo drips and shots, but nothing! Now she is on Pomalyst and they said we have a 5% chance it will work. 5%! Well, we are holding on to that 5% and praying to the Lord for a miracle every day! Mom is such a strong fighter! The strongest women I have ever met! My heart cries everyday for her. If you have any suggestions it would be so gratefully appreciated.
My prayers are with you and your family! May the good Lord allow us to have a cure for this horrible disease!
God Bless!
Terry Schumacher
Good luck to your mother, Terry. I understand how hard it is to watch her go through this. You don't know how much I appreciate your making the commitment to share her story. Truth is, what she's going through isn't that unusual; most simply never hear--or don't want to hear about it.
And thanks, Steve and Nancy. It means the world to me, knowing I can help and have regular readers and friends like you!
Finally, Ellie. It's never easy to lose one we love, even if they lived longer than anyone could have hoped. 14 hard years. Myeloma or not, I can tell your husband was a lucky guy to have you by his side!
Hi Pat,
Great article. Being realistic doesn't mean you are a pessimist or an optimist. A realist just has a good handle of what can be achieved and/or expected. There are risks associated whether a person is a pessimist or an optimist and they are not realistic about a given circumstance.
You hit the nail on the head with your comment,
"What can hurt us is being in denial to the point that we don’t get to the emergency room soon enough if we’re sick, don’t report serious side effects to our doctors, or put off important therapy discussions because we’re afraid of what the doctor may tell us."
And a pessimist may give up because they may think, Why bother there's nothing they (the doctors) can do?
I am a practical person, maybe a realistic optimist :). When you are told "There are no more treatments" it is absolutely gut wrenching. As would be the realisation of treatment options running out. But people sticking their head in the sand, or their fingers in their ears, is not going to help. Preparing for the day you are told "there is no more treatment" is not being pessimistic.
At my last myeloma clinic I asked the consultant, Why did my allo work so well? She looked at my arms that still bear the brunt of GVHD. "Worked well?" she said. I replied "Yes, because if I hadn't had the allo, I would be dead". Her final answer: "We don't know" (I'm hoping I will still be around when they finally work it out).
We then had a chat about allos. One of the points that did come up with regards to the small number of patients who had died after their allo was that some patients do not "embrace the transplant life". Embrace transplant life meaning that they didn't take the necessary precautions associated with someone on immunosuppressants. These patients basically died from infections.
Regardless of whether we have had an allo or not we need to be realistic about the risk/consequences of infection. Is that being pessimistic? - nah, I don't think so, I think it is part of my survival strategy.
I am hoping to still be reading your columns in 3 years time.
All the best,
Libby
Wish you years of happiness
Efra
Israel
While my courageous mom was "fighting" her battle, the statistics showed so many conflicting things. At the start, we were so encouraged at the "success" stories of 10+ years. At the end of month 15, about 3 weeks before she died, her one complaint (and we never heard another) was that in some ways it gives false hope. That said, it was her personal journey and everyone experiences something different.
Our hopes make us reach out for any good news. But sometimes, in this "fight", we forget to breathe and say "what if?" What if I only have 15 months? Would I spend it all being sick? Worried? Exhausted from almost living at the infusion clinic? "What if?" Do we remember to celebrate our last bit of time together? Do we sacrifice the moments of calm and normalcy?
It is all so incredibly hard and, yes, taboo. But for many it is a real part of what living with MM means. "What if?"
Pat,
As always, you inspire and impress me with your honesty. thanks for all you do. Be well!!
What a great article, you seem to have struck a cord with a lot of us mm people. Look forward to your next article.
Pat, thanks so much for your honesty. Your columns, and those of Steve Mohr and others, do so much to help me, relatively new to this world, understand the possibilities hidden within the ranges (10+ years or 15 months/3 weeks, as Kirsten discovered in her mom's case). I am a stage 3, "good risk" patient, but having rejected Revlimid on day 15 ("Paul, your skin organ is failing, and we either take you off or you're dead"), [now on Cytoxan, Velcade, and Dex (I call it dexa-dexa-dexachloriphine)], with an M-spike of 0.5 drifting down ever so slowly from the original 5.1, doing well except for insomnia, anemia, and fatigue, and now know I am one bad Velcade shot away from falling into a population whose drug options are fewer, even if only because there is less time for new ones. I was due for SCT, then off because numbers were falling, then due again because not dropping to CR, but with no date set.
I am applauded for a good sense of humor about this situation, but I find myself "lapsing" into sharing with family and friends the reality of uncertainty, and it is hard on them. I am a writer, and I just this morning updated my writing schedule of future articles, books, reviews, and blog entries, underway and planned. Its a legacy I am energized by MM to continue creating, while wondering who am I kidding.
I like that, Libby! "Realistic optimist." That's me!
Kirsten, so sorry about your mother's difficult struggle. Your mother's lament shares a concern of mine; unfair and/or unreal expectations built on an unrealistic focus on the positive by family, friends and even groups like the IMF. To be fair, there is no right or wrong here: we all want to be hopeful and hope we're the statistical exceptions to the rule. I would simply like to see more balance; stories like those of your mom not swept under the rug because they aren't what we want to hear. Thanks so much for sharing that!
Pat, thank you for this article! I am grateful you wrote about the taboo topic of death and end of life statistics and how they apply on a personal level.
It is so easy to skip the issue. "Can't you talk about something more pleasant?" "Oh, let's not have all this gloomy talk!" We (a sweeping generalization of "We") like to think all cancers are curable. So let's not talk about the ones that aren't.
Keep writing and keep enjoying every minute of what you have! Reading your column was a great way to start my day!
Paul, sorry to hear that Revlimid is off the table for you. Maybe your body will react differently to pomalidomide when the time comes?
And April, appreciate the support! I was concerned about writing another "downer" column. Glad it resonated! Already working on next month's: it will be more upbeat, promise!
Pat -- I challenge you to a bet (not a duel).
I bet $10 to a $100 that you are still posting in this forum on July 29, 2016. If you aren't, I send your wife $100. If you are, you send me $10.
Regards, Stan
I was going to sign off with "you feel lucky"? But then decided the meaning of that was too confusing - ha.
As the mother of a 35 year old multiple myeloma patient, I was hoping after her stem cell transplant, and because she was in complete remission, that she would be one of those lucky people that had 15 years or more with no complications. Unrealistic. Over the last 2 years of her dealing with fatigue, side effects of Revlimid, infusion centers, etc, I have become more realistic. Not pessimistic, just realistic.
The hardest part is seeing her peers moving on with marriage, children and just being able to do things that 35 year olds do. She wants some normalcy, so she drags herself to work and events. Sometimes I do get pessimistic when I see her suffering and now it appears the numbers are rising again, so there will be a new game plan. Although there are many new drugs and plans of attack, they are not a cure.
Pat, I agree with you. I try to be realistic about my husband's myleoma, but I am still very hopeful. I so look forward to reading your articles. Thank you for the time and energy you put into sharing and supporting others.
Pat-
I've always enjoyed reading your columns.
I keep a list of sayings at my desk, to help me with the occassional time. A couple of them:
- Participate willingly and joyfully in the passing sorrows of the world (Buddhist saying)
- Ain't nobody gonna bring me down (Stevie Wonder)
This post of yours reminded me of another good one:
- Nurture strength of spirit, to shield you in sudden misfortune (Max Ehrmann, Desiderata)
I agree with you that to acknowledge the 'dark' aspects of this disease is not necessarily a bad thing. You're a good example to me as someone who has continued to strengthen his spirit.
Pat,
Your column was so true. Something that helps me personally deal with mm is this prayer: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Thank you, Pat. You help so much sharing your story and for the reminder - the spirit is strong!
Sylvia B.
Pat, thanks for another powerful, well-written, and thought-provoking column.
Last week in a Beacon forum posting, I shared recent good news about how well my treatment has been going. I'm happy about that. And I'm happy about Steve's good news after his SCT. But at the same time, I can't help but feel sad for you with your dual Revlimid and Velcade refractory news, for SusanMary, Terry, Terry J, and Paul for their (or their loved one's) recent discouraging treatment news, and for Ellie and Kristen for their losses.
Your column and the comments here are sober reminders to me that we're all on the same roller coaster train, just in different cars that might be going up or down at a given moment in this wild ride.
Here's hoping that your roller coaster car starts heading uphill soon, Pat. And same for SusanMary, Terry, Terry J, and Paul.
Hi Pat,
If anyone judges a column by how many great comments it generates, this one is one of your best. The statistic you discussed early in the piece is what I call the "universal statistic" for myeloma patients. It does not matter if you did no transplant, multiple transplants, etc. If you have active disease and are not responding to IMIDs and proteasome inhibitors, the doctors do not have a great answer for us at this time. Hopefully that will change in the very near future but there is nothing wrong with bringing up that reality.
I have been on vacation for a couple of weeks. I did not get a chance to tell you how great it is to hear that you are responding to POM. All positive vibes being sent your way that the response continues for a long time.
Mark
Thank you Pat, and all you commenters. After being diagnosed in Oct 2010, I learned last summer, with a M-spike of 1.6, that I too was refractory to Revlimid and Velcade, AND Pomalyst. But then the clouds lifted, and I made it into the daratumumab trial (high dose group). Within a couple of months, my M-spike went to 0.1 and has remained there. My plasma cells percentage went from 47% to less than 5%. So, I didn't get a "complete response", but I am in the "Very Good Partial Response" group, for which I am very grateful. I had labs, treatment, and another bone marrow biopsy yesterday, and am hopeful of course that the numbers are still good. Naturally, I think the new monoclonal antibodies are very promising, and I encourage you all to check them out.
Welcome to Amelia Island. Hope you will consider joining our Jacksonville myeloma support group. Our group is evolving and would benefit from your input. Would welcome your leadership.
Dianna Chiles, co-leader, Jacksonville Multiple Myeloma Support Group.
I'm overwhelmed by your responses. What pleases me most is that readers feel comfortable enough to share their experiences as patients, caregivers, sons and daughters... And Stan, I'll take that bet; where do I send the $10?
Pat--Some time ago one of your columns was about addressing the elephant in the room. I was a bit disheartened by it, but I must say, your most recent columns have articulated in a more palatable way what we must face in dealing with this disease.
In light of the passing of Arnie Goodman, I just want to say as I replied to him on one of his columns: Pat, you are a beacon. Keep going. We are all behind you in fighting the good fight.
Hi Pat:
When I started to read the Beacon I made a point to read every single one of your columns from the archive and your blog. I have learned a lot and I do not think you are pessimistic or dark. Quite the opposite; you have given me hope with many of your writings on how to navigate life with this monster inside me.
I try to be practical and not to worry too much or panic, even if my particular myeloma happens to be quite stubborn and slow in responding to therapy. But I focus on the fact that I have no symptoms and, except from becoming a Tasmanian devil on dex days, I have no side effects either.
This last column is yet another realistic and thought provoking one and I thank you for it, as I do for all the others!
Cassy
Pat, Thank you for being so open and honest and realistic with where you are physically and emotionally with your MM. It helps me get my mind straight about my husband's MM and my attitude about it.
I am sorry to hear about your being refractory and you will be in my prayers, as you often are (and your wife as well).
Thank you for all you do for all of us who read your column and look to the Beacon for support, info and hope.
Kathy in Wisconsin.
Your kind words and support mean so much today; the day we mourn the loss of Arnie Goodman. I must admit I'm feeling a bit lost and vulnerable ...
Pat,
Your articles are a great source of strength to all of us.
My dad was diagnosed with MM in 2010 and after one stem cell transplant and a relatively short period of remission his MM is back. He is now refractory to Velcade and Revlimid. Since he lives in India, Kyprolis and pomalidomide are not yet available. He is going to meet his doctor tomorrow to discuss further options. It is not looking too good for him right now.
Thank you for all you do for your readers and I am sure you will be posting MM updates for a very long time to come.
Vijay in Dallas,TX
So sorry! Maybe get him to the States so he could participate in a clinical trial involving one or both of those drugs?
Hi Pat
Thanks so much for your column and for your comments about realistic thinking. Many of my loving friends have difficulty accepting my situation and probable prognosis. I too have recently become refractory to Velcade as well as Revlimid. I'm hoping to be accepted in a clinical trial for a monoclonal antibody, which may buy me some more time. Meanwhile I'm reminded (thank you Paul) not to "over share" about the reality of uncertainty with friends & family.
It's so good to have a forum where we can be open. Good luck to you,
Bonnie
I know! "But you don't look sick ..." "Your color is good ..." I think even my wife gets lulled into a false sense of complacency. The way I was hobbling down the beach tonight snapped her back to reality; I was really hurting!
Pat,
I agree with your column. You are being realistic. We all have to face reality of our situations. It is not like any other cancer. Even the doctors can't agree on the best treatment for us. How am I suppose to make the best choice?
When I attend the various seminars and listen to the specialists I get disheartened. They are all excited to show what they consider positive statistics, but you look on the bottom of the graphs and the timelines are always in months. Months not years. I don't think the specialist realize how this affects some patients.
Thank you for your dedication and your informative columns. I look forward to reading them.
Take care,
Jenny
Thank you Pat for your wonderful and informative columns. I was diagnosed in 2009 and also go up and down emotionally with the statistics that are shared with us. You and the other columnists all give me such hope and inspiration and I don't feel so alone in this when I read about your journey.
Thanks for sharing, Marianne! Sounds like you're doing OK. Good!
Pat, you mention that you may have avascular necrosis of the hip causing problems and a previous replacement. One issue that I have not seen mentioned with myeloma is the fact that several articles have shown that statins significantly reduce the incidence of osteonecrosis in patients on long term steroids.
Relapsed, recurrent myeloma patients if responding to a new combination continue on continually until no longer responsive and then go on a different chemo combination including dexamethasone. Overall survival is better with continuous use over stopping after 8 -9 months and then restarting when needed.
As a result, the patient could be on steroids continually for a significant period of time. Should these patients be considered for statin use early on, as prolonging life but allowing the quality of life to worsen doesn't make sense to me?
Perhaps one of the Beacon specialists could comment on the use of statins to prevent steroid induced osteonecrosis.
I'm not familiar with that, Jim. I'll poke around some and see what I can find out, too. Thanks!
Thanks for your comment, bond007, and for your reply Pat.
We've posted some information in the Beacon forum on the issue of steroid use and avascular necrosis / osteonecrosis and the possibility that statins may reduce the chances of long-term steroid use causing avascular necrosis.
The posting includes some questions for our forum participants that should give a sense of how often these issues are discussed with myeloma patients, and we'll also see if we can get one of the Beacon's Medical Advisors to comment on the issue.
Note that there are also some potentially useful references included in the forum posting.
Pat, I too don't think you are "a bit too pessimistic and dark," and reading your column carefully, you don't really think so either. You are just accepting that "some think" you are. Realistic optimism does seem to me to be the way to go, although not always an easy road.
Realistic optimism means embracing reality joyfully, no matter what reality may throw at you. One's disease is not "good" or "bad", it is just life and if you are basically optimistic about life, you just take the condition of your disease as a given, and decide on the best course of action.
Do I claim to have achieved such serenity? No, but I'm working on it!
Well said, Victor! A goal we all should strive to achieve.
Pat,
I hope that the pomolidimide treatment is working well for you and that your lesions are under control.
Here are six recent publications that might be of interest:
1)"Remission of disseminated cancer after systemic oncolytic virotherapy," Mayo Clinic Proceedings, 13 May 2014.
Use of a genetically-engineered measles virus to complete eliminate wide spread tumors in a patient with advanced MM.
2) "The Drug Vehicle and Solvent N-Methylpyrrolidone Is an Immunomodulator and Antimyeloma Compound," Cell Reports, 8 April 2014.
N-methyl-2-pyrroldione (NMP).
NMP, a solvent, can stimulate the immune system and kill MM cells. "This reprogramming reawakens thousands of genes that have been silenced in the cancer cells, immediately stopping the myeloma cells from growing, while activating the immune system to respond to the cancer." (Peter MacCallum Cancer Center researchers).
3)"Genetic Modification of T Cells Redirected towards CS1 Enhances Eradication of Myeloma Cells, Clinical Cancer Research, 27 March 2014.
Genetically modified T-cells target CS1 and kill MM cells. Use of genetic engineering to equip T cells with a Chimeric Antigen Receptors (CAR) to target CS1, expressed in MM cells. (Ohio State University research).
4)"Circumvention of Mcl-1-Dependent Drug Resistance by Simultaneous Chk1 and MEK1/2 Inhibition in Human Multiple Myeloma Cells," PLOS ONE, 4 March 2014.
Use two-drug regimen of Chk1 and MEK1/2 inhibitors to circumvent Mcl-1 up-regulation and ensuing resistance to proteasome inhibitors (VCU researchers et. al.).
5) "A novel small molecule inhibitor of deubiquitylating enzyme USP14 and UCHL5 induces apoptosis in multiple myeloma and overcomes bortezomib resistance," Blood, 30 Jan 2014.
VLX1570 –USP14/UCHL5 inhibitor (Dana-Farber Cancer Institute Research).
6) “Engineered T-Cells Expressing An HLA-Restricted Affinity-Enhanced TCR in Advanced Multiple Myeloma Patients Post Auto-SCT Engraft and Are Associated with Encouraging Post Auto-SCT Responses,” ASH 2013 Annual Meeting, 9 December 2013.
Engineered T Cells with affinity enhanced TCR (Teams from University of Maryland, University of Pennsylvania, et. al.)
In addition, here are some nearly "Ready-for-Prime-Time" treatments that you might already have seen:
I. Monoclonal Antibodies
1) Elotuzumab
2) Daratumumab – Phase III trials for relapsed MM (breakthrough designated by FDA!)
3) SAR 650984 - for relapsed and refractory MM (larger studies later this year)
II. Histone Deacetylase Inhibitors
1) Panobinostat
2) ACY-1215
III. Kinesin Spindle Protein Inhibitor
1) Filanesib (ARRY520)
Let me know if this helps.
Mark
Outstanding review, Mark! A reader emailed me earlier today, thankful for options. That's a lot of them. But I must say, I hear from patients regularly that try "outside the box" T cell type trials. None have ever helped. I'm afraid in the near term, good old fashioned novel therapies (some of the new ones count, including immunotherapies, although I don't know anyone that has helped as far along as I am, either) are the ticket. Need fourth leg to the treatment stool...
Pat,
You're more than welcome!
The publications that I mentioned seem to be promising and only two used a CAR (chimeric antigen receptor) approach. The others are likely to be the next generation alternatives after the monoclonal antibodies, HDAC inhibitors, and Kinesin protein inhibitors.
The paper that intrigues me the most is the one on the use of MEK1 and CHK1/2 inhibitors inasmuch as that dual treatment (i) circumvents resistance to bortezomib and (ii) is benign to healthy stromal cells. I have not heard that the VCU researchers have received pharma sponsorship yet for a clinical trial.
As for the near term, Elotuzamab, Daratumumab, and panobinostat are fairly close to approval I believe/hope! So, these are approaches that you can look forward to pursuing sometime soon to complement your successful/positive response to carfilzomib and pomolidimide.
Mark
P.S. The first-cited publication reported the use of an engineered measles virus to successfully treat two salvage patients - they were out of treatment options from my understanding. Both responded positively and one is still in a remission state as of the date of the report! So, there is truly more than just hope.
I understand that Mayo Clinic has a waiting list a mile long for that one! Apparently it takes so many doses (millions) in order for the new therapy to work that the labs involved have needed months just to produce enough doses for a few more patients. Sort of thing we never factor in.
My husband was diagnosed in August 2011 with Stage IIIA IGA MM over 80% marrow involved. Went through 3 months dex, 3 1/2 months Velcade infusions with dex until his neuropathy got to bad, then 3 months Revlimid and dex until he was in CR. In June 2012 did a stem cell capture and was able to get enough cells for 3 transplants. He had his first transplant July 18, 2012 and had a very good response except his platelet level never recovered completely and 97 was his new norm. He relapsed in June 2013 and it was aggressive stage IIIA again but marrow less than 30% involved in a very short time.
Since his relapse he has had regular platelet and blood transfusions, sometimes up to 3 platelet transfusions in a week, which was so different from the initial treatment since he only had one platelet transfusion in the BMT unit after the transplant. The Revlimid / dex worked at lowering the protein from when he started in mid August 2013 until November. In December his numbers stared to creep up and by early February 2014 Revlimid stopped working and his numbers were increasing aggressively. He was able to get on Pomalyst and after 3 months it was determined that this treatment was not working either and during this time he suffered from hyper-viscosity and had to have a plasma exchange to help with the bleeds behind his eyes and in his nasal passages. He got an infection and needed antibiotics to assist in clearing up the sinus infection.
In June he was again Stage IIIA and they moved him to CyborD treatment and it is working - 3 rounds completed and his numbers are very low! All good and he will be finished his 4th early September and a planned 2nd transplant in October.
This has been quite a roller coaster for our family as my husband is only 45. He hasn't been able to work since mid March because of the complications, extreme nausea, fatigue and constant need for blood products and a white blood count only between < 1 -2. I am hoping that after the stem cell transplant his CBC numbers will start to normalize - is this just wishful thinking or a viable possibility?
Reading your column over the 2 plus years has been helpful but there always seems to be more questions than answers with this awful disease, which makes me feel helpless at times.
Sorry for the long comment, I guess I am just venting my frustration at how this disease changes and not knowing the true outcome of a 2nd ASCT. Is it the best decision - how long after the transplant with Velcade maintenance before it becomes refractory to that and then what?
Having said all this Pat - you have been an inspiration to many that have this awful disease and to their caregivers. I have only posted one other time - in which you responded quickly and I thought - Wow this guy really cares about everyone.
My very best to you and yours and I have my fingers and toes crossed for a favourable outcome for you.
Never apologize for sharing your family's story, Sondra. Not sure it helps, but so many are similarly affected by multiple myeloma. It isn't just the patient. And most face complications and the type of ups-and-downs that you describe. Best of luck and let us know how things are going from time to time, OK?
Thanks Pat - I will try. We are a very private family and me opening up so publicly after almost three years was libertating as well as scary. I feel deeply for you and all the others going through this. There are always more questions than answers, but also a lot of new research and hope. I won't lie, I have been close to the breaking point as a caregiver and still can't even grasp what my husband, you, and other patients are going through. Your strength is amazing and a true testament of who you are. I wish that no one had to deal with any of this - but alas it is what it is.
Take care and I truly hope all goes well for you in this next chapter of your journey.
Good luck, Sondra!