Thursday, April 7, 2016

Pomalyst and Darzalex

Darzalex (daratumumab) is a potent myeloma treatment by itself, but even more so when combined with Pomalyst (pomalidomide), and that is what my Dr WG wants me to have now.  I couldn't agree more.  Two studies that have benefited other people have failed for me, one after the other, and my IgG and M-Spike have increased.  Far worse, my most recent PET/CT shows five lesions in my bones including three scary ones in the spine, so it's time to bring out the big guns.

I've been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-recent study to wear off, and Tuesday I received my first infusion of Darzalex.  That was an experience.  I have been SO lucky - more than 12 years with myeloma without any infusions EVER.  That ended last December, with the last study, because one of the two study drugs was an infusion, but Darzalex is in a class by itself.  This is NOT a complaint, because we myelomiacs do whatever is required to stay alive and running marathons (or whatever) and we don't whine about it, right?  This is just a report.

According to the manufacturer's Darzalex Dosage and Administration instructions, there is the possibility of an infusion reaction of some kind.  For this reason the infusion rate starts out low and builds up.  If any reaction occurs, the infusion rate drops back to the beginning.  Furthermore, the very first infusion is a special case - the infusion rate is very low indeed - and if the instructions are followed correctly it cannot take less than 6 1/2 hours.  With a reaction, it could obviously take longer.  A few weeks ago in Virginia Beach we attended a support group meeting where I spoke with two people for whom it took most of the day.  Then I spoke to a friend from our own support group who breezed right through it - didn't recall that it took 6 1/2 hours.

In addition to infusion time, some amount of time is required to prepare for the infusion.  Since I don't have a port of any kind the nurse had to find a good vein (I have lots) and set up the temporary port.  Then I was given oral Tylenol and Benadryl, followed by an infusion of prednisone (the pre-meds), all to reduce the likelihood of a reaction, and there was a little waiting for the Mayo Clinic pharmacy.  When the Darzalex infusion arrived, the drug itself (I think three 400-mg vials) was already mixed with a liter of saline, that bag covered by a semi-transparent shroud intended to keep light away from the mix.

At first my "vitals" were taken every 15 minutes, really just blood pressure and heart rate I think, not even temperature or pulse oxygen, but of course they always asked how I felt.  The 15 minute intervals became 30 as time went by, I had no infusion reaction at all, and I suppose the Darzalex itself took about 7 hours total, maybe a little more because the infusion pump stopped and beeped every time they needed to take vitals.  Added to other delays I was in the chair for almost nine hours.  I dozed a little (the Benadryl) but mostly talked to my sweeties and amused myself with the computer.  Easily the most physically relaxing day I've had in years.

My advice: Go with the flow, get an early morning appointment with nothing else on the day's calendar, and plan on a nice, long, but easy day. Bring stuff to do - computer, smartphone, Kindle, books, magazines, friends to talk with, even watch TV or sleep.  My sweeties brought me food now and then during the day, and even a Starbucks.

Mayo Clinic knows how to do infusions!  The nurse who started me out (Andy) very carefully wrote out the start times for each medication on a whiteboard, and a chart of the specific settings for the infusion pump for each hour of the Darzalex infusion.  All of the nurses referred back to that chart as the day went on and shifts changed.  I wish I had taken a picture of the whiteboard.

Unfortunately for us Mayo isn't next door, it's about a 200-mile round trip, but we have an infusion center within a short walk of our house.  Darzalex infusions are weekly for the first eight weeks, then every other week for a while, and although I have appointments for three more infusions at Mayo I also have an appointment with a local provider to see if the infusions can be moved next door.  Mayo would, of course, continue to be my primary source for overall management of the myeloma.

We know that after seven wonderful years on Pomalyst my myeloma finally progressed, as we knew that it would eventually. A PET/CT revealed a hot spot appearing in one vertebra.  According to my doctors, that is probably a sub-clone of the original myeloma, somewhat immune to Pomalyst.  I was then taking Pomalyst as a single agent, and according to one doctor it's possible that the new clone could have been managed for a while by the simple addition of DEX to the regimen, but now after the failed studies it appears that we need both DEX and a third drug to manage the clone or clones.  Dr WG suggested that if this regimen gets my numbers down nicely, and the hot spots disappear, then perhaps Darzalex could be my next seven-year treatment.  Wouldn't that be something?  82 years old, getting monthly infusions, and maybe even still running a marathon now and then.  Dream big!


  1. Well written and informative, Don. Thank you. I'm a 13 year myelomiac and, in line with your 'Code', refuse to complain about anything because even the harshest treatments result in more time to enjoy the blessings of life.

    Dana Farber's regimens have had extended term success on my disease. Since an sct in 2012 I've been on a daily 10mg Rev, but due to lowered neutrophils we just reduced to 5mg. Every other 30 day blood draw appointment I have a 20 minute Zometa infusion. And that's it. I know this will change, things will become more complex, but, that's life in the big city.

    Waiting for the streets to be clear of ice & snow, here in Boston, and then will remount my faithful old Lemond road bike to begin training like rides. Less distance these days but I like being out there and I credit you with the inspirational fuel to overcome laziness.

    Bless you, Brother and thanks,


    1. Thanks Frank,
      I'm so glad that you have been able to live a good life since 2012. And the bike is a wonderful way to stay active.
      Bless you too, Don

    2. Just diagnosed smoldering multiple myeloma . Hospital wanted to start me on Revlimid but went to the va hospital they said no need would do blood work every 3 months. Going to myeloma specialist at NC MEDICAL CHAPEL HILL NC THURSDAY that multiple-myeloma foundation advised me to go. Any suggestions thanks age 72 male

    3. I believe you said that you are just smoldering, which means that you have no symptoms. I have heard of studies being done to find out whether there is any advantage to treatment at this stage, but I do not know if the studies produced a definite result. NC Chapel Hill will tell you!

      You do need to know if your myeloma is "high risk" because, if so, three-month intervals may be too long.

      You are seeking advice from multiple sources and taking charge of your diagnosis and treatment. Good for you!! That's how to stay alive.

      I was diagnosed almost 13 years ago, now 75, no transplant. Still have that arrow in my quiver.


  2. Thanks for this very informative experience with Darzalex. I'm glad you had no reactions. I'm 11 years out from diagnosis and feel, like you, very fortunate. My weekly Velcade shots are not so bad and my drive is just under an hour one way.
    I'm still not sure what will happen when we stop the course after cycle 6. My doctor is definately of the mind less is more.
    I am curious though, why would your doctor add the Pomalyst ,if that had stopped working for you?
    Best to you from California!!

    1. Hi again Christine,
      That's a really good question. My view is that the Pomalyst is still controlling the original myeloma clone, keeping IgG and M-spike level. Therefore, what I need is something to control the sub-clone (or clones), and that can be something else. Maybe Darzalex could even do it all, but this approach has a higher probability of success. There are other agents, but my docs think that Darzalex holds the most promise, and if it doesn't work we'll try something else.
      Take care, Don

  3. Thanks Don. I believe Darzalex is in my future. I appreciate you detailing the experience of the lengthy infusion. Best wishes for continued success in fighting MM. I hope these drugs allow you to run more marathons. :)

    1. Hi John, thanks. Indeed I hope so too. In fact I just finished one yesterday (Saturday) four days after the infusion, so things are still looking good. Don

    2. Wondering if you had stem cell therapy

    3. Not yet - I'm saving it for last :-)

  4. I just finished my 5th week of treatment. My first week I did experience the chills, but they got them under control. I was then sent to the local hospital for a blood transfusion since my counts were so low. I thought I had my routine figured out for feeling foggy headed, but this past week things changed, so it is a matter of rolling with the tide. Overall my oncologist is pleased with the results and my counts have really improved. I was diagnosed June 2015, SCT December 2015, Revilimid April 2016, but relapsed several months ago, thus now trying this treatment.

  5. I usually don't comment on forums, but thought I would add in my 2 cents worth. My wife was diagnosed with MM in 2007. After she received treatment for a spinal lesion at the local hospital, we researched what we could about MM on the internet. At the urging of her family physician and her attending oncologist, we decided to get treatment at the Myeloma Institute, UAMS (University of Arkansas Medical Services). For us, that’s a 9 hour drive.
    Her treatment began with an autologous stem cell harvest and two transplants. They also harvested enough stem cells to retreat patients in the event of relapses. The support at the Institute has been phenomenal. They don’t believe a patient should suffer through chemo treatments before, during, or afterwards.
    We’ve been going to UAMS for 10 years now. It’s not uncommon to meet patients there who have been going longer than we have. The Institute is also well known in international circles; you meet patients from many countries.
    Her MM has been stubborn, refusing to go into remission (smoldering). Her MM is the kappa light chain variety. She has progressed through varying dosages of Thalidomide, Revlimid, and Kyprolis. Her newest regiment of drugs include a combination of Darzalex and Promalyst.
    We all know that currently there is no cure for MM. We also know that there is no cure for life. We’re born, and then we die. She may outlive me and our children. I’ve always been told it’s not how long you live, it’s how you live. When people ask of her, I tell them she is doing fine, and she is. Occasionally she gets a little down (what I call a pity party), but I don’t let her stay that way long. Mostly, she is a fighter, and tougher than I am. My job is to keep her healthy and happy. In return she completes me.