Pat’s Place: When The End Isn’t The End
Before I get started, I want to share good news about my ongoing myeloma therapy.
If you recall, after a recent relapse, my doctors and I had decided to try adding Revlimid (lenalidomide) to my doublet of Velcade (bortezomib) and dexamethasone (Decadron) one last time, hoping it might still work. Although it has only been two months, the combination does seem to be helping; my M-spike has dropped from 0.5 g/dL down to 0.4 g/dL, or 20 percent.
But enough about me!
I recently heard from a fellow myeloma patient with good news.
Seemingly out of treatment options, his doctors had admitted that there wasn’t anything more they could do for him. He got the dreaded ‘go home and get your affairs in order’ talk.
Unwilling to accept his untimely end, my friend sought out a doctor that might be willing to think outside the box. The good news? He found one – and the therapy they tried is working!
Was it a new, top secret drug without a name? Or a cutting-edge clinical trial? Nope. His new medical team suggested adding a drug that has been around for decades, Treanda (bendamustine), to a failing combination of Kyprolis (carfilzomib), Pomalyst (pomalidomide), cyclophosphamide (Cytoxan) and dexamethasone.
Who could have predicted that a drug rarely used for myeloma could make such a difference, especially when two of the other drugs are new and were only approved by the U.S. Food and Drug Administration recently? How exciting! And the even better news? It turns out that the unlikely combination has now been working for almost a year. An example of how tweaking therapies just a bit can pay off big time!
A few weeks ago, The Beacon ran an article about extramedullary disease (myeloma tumors that occur outside bone in soft tissue). Apparently, these are more difficult to treat because immunomodulatory drugs (thalidomide [Thalomid], Revlimid and Pomalyst) and proteasome inhibitors (Velcade and Kyprolis) work best in the bone marrow. Patients running out of treatment options – or facing unusual cases like extramedullary disease – should strongly consider getting a second opinion from an experienced myeloma specialist, preferably one of the best in the field.
Why? Because once we get past the Velcade and/or Revlimid stage, a medical oncologist or hematologist just won’t do. At this point, we need the advice and guidance of someone who works with hundreds of myeloma patients each year.
My friend’s doctors had prescribed the standard of care: Revlimid-Velcade-dexamethasone induction, a stem cell transplant, and Revlimid maintenance. And after he relapsed? Kyprolis and Pomalyst. All of these drugs are FDA-approved for the treatment of multiple myeloma. His new doctors tried adding another drug (Treanda) -- one that is approved to treat myeloma in certain European countries and is FDA-approved to treat certain types of leukemia and lymphoma, but not myeloma. By tweaking his therapy a bit and trying something a little outside of the box, my friend’s new doctors were able to help save his life.
By the time we relapse for a second or third time, treating myeloma becomes more art than science. I picture several witches standing over a large, black, steaming cauldron, mixing a number of ingredients together in a mysterious brew. It takes a deft and experienced myeloma specialist to learn from past experimentation, mixing and matching treatment options until they find something that works.
I understand that, at some point, many of us will run out of options. Sometimes after a long fight, we may not have the strength to battle on. But even when things seem dire – if you’re up for it – I encourage you to seek advice from outside your health care team. A new pair of expert eyes may see a new angle that works.
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 .
Hi Pat, It is fantastic that your friends new regimen is working. I think you are spot on - fresh eyes viewing the problem from a different angle can make a huge difference.
Excellent column as usual Pat! Team spirit lives on and this story is truth that perseverance is invaluable as we forge ahead in battling the beast.
Congratulations on the seventh anniversary of your MM diagnosis Pat! You are still going strong. I believe it is always good to keep surfing the wave, staying one step ahead of the next recurrence. There are many outside the box options to keep the MM tiger in the cage. For me, genomic analysis has led to BRAF and now MEK inhibitor therapy, with amazing results. It is all about finding the right key for the keyhole. And who knows what other therapies are just beyond the horizon? Be they monoclonal antibodies or innovative immunologic approaches, they hold the promise of a cure for MM one day. More radiation or cytotoxic chemo will not be the answer, and allo transplants are a huge gamble. So continue surfing ahead of the wave! Jan
How exciting you were able to match up your genetic profile with the right meds, Jan! Evidence that in a few special cases it works. Good for you! And Libby, Vickie, pleased I can help!
Thank you for a great article. You have brightened my day, and I have learned something important. Will keep this in the back pocket of my brain for use at my relapse time.
Sweet!
Good advice there.
Hi, Pat.
I have suffered from MM about as long as you and came up with some issues with Revlimid maintenance treatment. About 3 years ago when I noticed that Revlimid + dexamethasone was unable to reduce my IgG low enough, we added a month's treatment with Velcade. It didn't have any immediate effect, but once I had resumed my Revlimid maintenance the next month there was a dramatic 8-point improvement in my IgG to the normal range. Since then, I have boosted my Revlimid maintenance yearly in a similar fashion. I don't mix the two but use them serially.
I used Velcade quite a lot prior to my stem-cell transplant 6 years ago, so it is not a new medicine for me. It seems to me that Velcade weakens the bad cells to the extent that Revlimid can again deal with them. In your case it seems to be the opposite case between these two drugs. Anyway, interesting to hear of your experiences.
I'm not familiar with mixing and matching Rev and Velcade therapy intentionally that way, Steve. But I agree there may be some logic to it. Just another example of how doctors mixing and matching myeloma therapy can be as much an art as a science. All that matters: it's working for you!
Full SPEP ( utilizing Kappa,Lambda and their ratio) is a much more sensitive measurement of active MM.
M Spike (alone) is kinda ...."rough". However, having a southward drifting M level is re-assuring.
Don (Myeloma Hope) posts his numbers monthly in the exact same Table fashion---including Kappa-Lambda-Ratios, etc ----much easier to see the long-term progression / change in MM measurables and effect of medications.
Revlimid is a nice drug. Now, if they could do something about the Price.!
Zowie !
I visit Don's site from time to time. Yes, very impressive the way he lists and tracks his numbers. All that shows up on report from my local oncologist is spike number. Guess I could request more detailed info. I'll look into it...
How I love this article. My sister is fighting EMD that wasn't treated properly and has now spread even more. She has also gotten the, "go home and enjoy whatever time you have left to live". She felt defeated and weak, especially after a 5 day brutal vd pace regimen. But in 4 days I could see a difference and I'm praying she can recover so we can go see a specialist. I don't know how my sisters struggle will end, but I'm glad it doesn't necessarily have to be the end of the road.
Best of luck to you both! I'm praying that your sister recovers and all is well.
Hi Pat,
I am pleased to hear that your new therapy is helping.
Following up on your comments about bendamustine (Treanda), I thought it might be useful to highlight the recent Phase II clinical trial carried out by Myeloma UK. The trial investigated bendamustine in combination with thalidomide and dexamethasone in a heavily pretreated group of patients with relapsed or refractory myeloma. Results were encouraging. The study established a dose that was well tolerated and produced a PR or better in almost half of this patient group.
Barry
Thanks for the comment, Barry. For those interested in learning more about the study Barry mentioned, an abstract presented at ASH provides some of the details. Here is a link to it:
http://www.myelomabeacon.com/resources/mtgs/ash2013/abs/286/
Thanks for your update and your good news. I also hope that someone has reported this news of the new addition and it's effectiveness to someone so that news can be shared in the MM community. All new therapies should be known to everyone to spread the good news!
We're all doing our best, Randy!
Hi Pat, I am a newly diagnosed MM patient, 49 yo. I am about to start induction treatment and was offered the standard of care RVD or CyBorD, and also a clinical trial with Kyprolis a t Weill Cornell MM clinic in NYC.
Any words of advice, I feel overwhelmed about having to make such a decision! Any thoughts or opinions would be so welcome! What do you think is the best hospital/doctors for MM in New York?
Many thanks
Hi Pat,
Is there any chance of getting more info on the patient that was given Treanda. My wife's last labs showed an increase in the m-spike and she is on the same drugs that he is. I wanted to mention this to her doctor to see if he would consider adding it.
I've been following your writing for 2 years and it has been extremely helpful. Thanks for all you do.
Thank you, Pat, for your article. I'm glad your numbers are better. I think it's good for me as an mm patient to remember that there are options. Thank you for your encouragement and thanks to all the respondents, too. I hope to "keep on keeping on."
Adrian, hard to make a mistake this early. Any of those options are withing standard treatment guidelines. Only other possibility to consider would be going to Arkansas and undergoing rigorous Total Therapy. It works best before a patient starts therapy of any kind. They put up some pretty good numbers (stats) down there. Staying in New York? Sounds like you are in good hands; your clinic has a great reputation!
Terry, I believe I have already gotten you that information, correct? By the way, heard from him today and his results last month were even better than the first! Quite a relief for a guy who's therapy wasn't working well.
Sounds like you are doing well, Sylvia! For most of us there are options. Here's hoping yours go on and on and on... Stay well!
Pat,
I didn't see a reply (probably something I did) but I asked her doctor and he said he couldn't add Treanda to Pom, Car, cytoxan and dex that she was on but could do Treanda and Car. Would like to know what his combination was.
Thanks again and stay well.
Sure. Here's an excerpt from an email I received from him over the weekend:
I also wanted to pass along my update, my test results from my second cycle came in and my numbers are much improved. We track protein in my 24 hour urine and the % that is paraprotein. I saw a 50% drop in that number, so it seems to be pretty effective. With Treanda I get Velcade, dex and Revlimid.
I have been smoldering for about 3 years and with the latest MRI I have advanced to MM. I have some decisions to make. The doc says I can join a trial that gives me the same treatment as no trial. I would like to do the trial, so I could feel like I'm doing something to combat the disease, but the effort, time, and travel needed is a little much. I feel selfish just taking treatment and not joining the trial. Doing the treatment alone is overwhelming. Everyone on this site seems so together and positive. I am neither, mostly I'm a mess. I was always the one who takes care of everyone, and now I'm not doing well thinking my life as I know it is over. Someone please tell me they have a normal life.
Yes! I think you can have a somewhat normal life, especially the first span of one, two, three or more years while initial therapy is working best. It gets better (for most) -- honest! And don't feel selfish. But patients are needed for basic trials like your doctor suggested. Still, you need to do what's best for Kathy!
Kathy:
I'm sorry you progressed into active MM. That causes one to contemplate many, many things. Uggh. I remember it well.
But,...define "normal"..! LOL!
Yes, MM can cause many things to change. Goals, methods, and energy levels, mostly. The first year of Treatment was a bitch for me. I went thru it alone, as a single parent.
I was a flaming mess when I awoke from surgery on May 12, 2012. ("You have MM and you have maybe 4 years to live..)
Pat is correct. Take care of you. As best you can.
Once I got past Scans, tests, Surgery, Scans, Radiation, Scans, Induction, Scans and tests,tests, tests,...and Stem cell harvest, ( I delayed transplant) things have calmed down quite a bit.
The recent Hip replacement was a cake walk, after all the above.
( Side effect of radiation for a "Suspected" plasmacytoma)
I'm back to work full time. I work 20 hrs a week less than I did in 2009. ( 60/40).
I feel pretty good most days.
I pace myself. I am more realistic in formulating goals/ aspirations.
I sleep more. I take better care of my health and diet.
Today--Observing Controlling people and their "important" agendas can be very amusing.
I have also learned to ignore the "Gee, You look okay, so you must not be that bad", comments. (It's a battle --all inside of us..)
I have accepted that it is hard to explain to Non-Myelomers that some days... I just feel like SH8T. (Usually tied to certain meds, only)
I have learned to care less about stuff I cannot control. I have learned that Denise is one helluva phlebotomist; My Oncologist knows his stuff; The RN's are pretty good. (at my Treatment Ctr)
I still have trouble asking /accepting help--but I'm getting better.
I have accepted that I probably won't collect on my Soc-Sec (old age) but, I hope I won't collect Soc-Sec (Disability) either. ( Yes, that does sound weird !)
I have learned to say "No" more often--because no matter "how willing" I might be...the physical "oomph" is just sometimes not there...as it once was. I can still help out--I just get tired, sooner.
I am still very much alive, can do most things, and will be alive next week / next month / next year. Beyond then, I don't plan so much. Yet, I still hope--so does everyone here.
It's actually a blessing to know that you or I might pass soon--you get to focus on things that really matter, ..ie. Writing your own obituary, seeing friends you really want to see, spending quality time with loved ones, letting others fend for themselves, etc. You get to Focus on your stuff...Like Pat and others say.
In short, your perspective changes--but in a positive way. It's very like someone put the merry go round into ..."fast, when you were used to slow." But it will slow down for you, once you get thru initial treatment(s).
You are very much alive, still. It will just take time for you deal with the changes and the "work arounds", required.
But like all of us, you will do it just fine. Remember: There are no style points given...LOL!
Example: It is hard to feel dignified and "together", when you have both ends emptying at once...and someone says, ...."oh, are you ill?".
It happens, but not very often. Some people just cruise thru their treatments, whistling. You just have to laugh...
Read much, Kvetch often, shed some tears, get angry, and move into acceptance. A new "Normal" awaits you .
Good luck.
R
PS--my "M Spike" just moved to 0.1 after being 0.2 for a year. (With NO change in meds). My Full SPEP is beautiful. Lambda, Kappa, Ratios, too! Beta 2 and albumin are great. RBC/WBC are good, too!
Jeez--I find I am scared of moving to "Complete response /Remission"--ie. will I lose that ? When ? What do I do, then ? etc.
The whole idea is to get the myeloma to zero...yet, I'm fretting about it!--Am I completely nuts ..or what ??
--Yeah, I'm REAL Normal..LOL!
Just another "New Normal" for me to deal with...too !
Welcome aboard, Kathy. Hope something in all these columns helps you.
Get new Myeloma Beacon articles by email.