Arnie’s Rebounding World: My Answer Came Too Soon
In the column I wrote two months ago, I relayed how I was doing 100 days after my allogeneic (donor) stem cell transplant.
I struck a pretty optimistic note. I felt that the transplant itself had gone really well and that the big question that was still out there was whether it would work to control my multiple myeloma for a meaningful amount of time.
Unfortunately, I may have gotten my answer sooner than I expected.
I was really hoping 2013 was going to be a better year healthwise than 2012. I started out the new year looking forward to a period of time where I didn’t have to be a full-time myeloma patient.
It was not to be.
It started with a toothache, of all things. The dentist and endodontist were sure all I needed was a root canal. I guess if all you have is a hammer, all the world looks like a nail.
After the root canal, the pain was unchanged and started to get worse. My cheek and face were hurting and even seemed to be swelling. I was an Ear, Nose, and Throat doctor for God’s sake; I should know how to approach this.
My Moffitt doctors ordered a CT scan of my sinuses. The test showed a maxillary sinus that was completely filled, but with what? Infection, especially a fungal infection, due to my suppressed immune system seemed to be the most likely scenario.
I also developed two small nodules under the skin of my upper arm. A needle biopsy was initially suspicious for fungus but then negative.
Within a day, I was on my way to sinus surgery to drain and biopsy the maxillary sinus. All of this was way too close to home. I had performed hundreds of these surgeries myself.
Afterwards, the surgeon said everything looked pretty good. The preliminary results showed no bacteria, no fungus, and no tumor.
All of that seemed like good news, but my symptoms were getting worse. My cheek was getting more swollen and painful, and the skin over my cheek was getting numb.
As a patient, I was hoping since the results were negative that it would just take some time to heal. As a doctor, I knew something was not right.
It took almost two weeks for my answer to come.
During my regular visit to Moffit for my Kyprolis (carfilzomib) infusion, the nurse said, “The doctor doesn’t want you to leave today until you talk to him.”
Hum, this is not good. Here it comes.
Within five minutes, my doctor was in the room looking grim.
The final biopsies from the sinus showed multiple myeloma.
I had what is called extramedullary disease: multiple myeloma that is outside of the blood and bone marrow, anywhere in the soft tissues or even organs of the body.
I have come to learn that this is not unusual. When a donor transplant fails, it is apparently commonly due to extramedullary disease, which is in areas that are harder to reach by the immune system.
The short-term plan was to start radiation therapy to the sinus and cheek and to stop all of my immunosuppressive therapy. We wanted to fire up some graft-versus-host disease (GVHD) to gain some of the positive benefits of the graft-versus-tumor effect that would hopefully accompany it.
The good news is that multiple myeloma cells are very sensitive to radiation therapy. The radiation has gone well. My pain and swelling are gone. Compared to everything else I have done so far, radiation treatments are a walk in the park.
So, chances are pretty good that we can get rid of the myeloma in the sinus with the radiation.
The nodules on my arm seem to be getting smaller and are very tiny now. They are presumably myeloma as well, but we are unsure and are watching them closely.
The question now is: what do we do next, and how does this bode long-term?
Almost all of the drugs used in multiple myeloma will have some impact on the immune system after a donor stem cell transplant. It is a delicate balancing act to try to have just enough GVHD to gain the benefits of the graft-versus-tumor effect without being miserable from the side effects of GVHD.
Velcade (bortezomib) and Kyprolis will suppress the immune system and therefore tamp down GVHD and likewise probably graft-versus-tumor effects.
Revlimid (lenalidomide) is known to ramp up the immune system and to exacerbate GVHD, which may have a beneficial effect on graft-versus-tumor effects.
As far as I can tell, Pomalyst (pomalidomide) has not been tested yet in the post-donor stem cell transplant setting.
So what should we do?
One option is to do nothing. Everyone has told me that the best potential long-term ally is my new immune system from the transplant. Doing nothing would allow the new immune system to do its thing, hopefully generating some graft-versus-tumor effect.
All of the myeloma drugs remain options on the table, but probably not without risk.
We may also consider a donor lymphocyte infusion, an infusion of white blood cells from my donor, if GVHD stays quiet for 60 days once I am off my immunosuppressive therapies. The problem is that donor lymphocyte infusions are probably not as effective against extramedullary disease, so no one has seemed to jump on this option.
As for the new long-term prognosis, definitely not as good as it was looking a couple of months ago, but we’ll see.
For the time being, I’m back into full-time fight mode a lot sooner than I thought I would be.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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Dear Arnie,
Really sorry to hear that you are having to "fight" again after all that you have been through.
This is a set back for you and your family but your extended Myeloma family are channelling all our energy to help you to get through this bump in the Myeloma road.
Keep fighting we are with you all the way.
Arnie, I appreciate so much your keeping us posted on what you're experiencing, even when things start to get a little tough. I'm sure you have a ton of other things on your mind right now, so I'm particularly grateful for the time you've taken to share with all of us what you're experiencing and the options you're considering.
I wish I had some creative suggestions for options that you should consider, but it seems like you and your doctors already have thought of most of them. I do recall the research you mentioned about Revlimid being beneficial after allo transplants, so I was glad to hear that you and your doctors are considering that option. I'm sure you're also aware of the research that shows that Pomalyst can be quite effective against extramedullary disease. There was a caregiver from Germany who posted in the forum how her partner had a really, really bad case of extramedullary disease, and Pomalyst basically wiped it out.
I truly hope that the recent turn of events is just a temporary setback. Nothing would make me happier a year from now than to find myself reading a column from you where you discuss not knowing what to do with all your extra free time, given that you no longer have to worry as much about myeloma.
Dear Arnie, with your really knowledgeable doctors, and your own research into myeloma, I hope that you can work your way around this setback. We are sending warm wishes you way!
Dear Arnie,
You are incredibly strong, and I know you'll find a way thru this with your team of doctors. It is very hard to have setbacks, but you've got things to do yet!
Best to you and your family....hang in there!
Yes...Arnie...thank you for taking the time to keep us up with your progress. It's a testament to your strength that you can do so.
I looked up that Beacon article regarding Pomalyst and extramedullary disease just in case you hadn't the opportunity to do so. Here's a link to it:
http://www.myelomabeacon.com/news/2011/04/01/pomalidomide-may-be-effective-in-myeloma-patients-who-develop-extramedullary-disease/
Lotsa of folks here rooting hard for you Arnie!
Best,
Steve
Dear Arnie,
I was sorry to read about the difficulties you're having, and I wish you the very best in your struggle against MM. You will be in my thoughts and prayers.
Lin
Dr. Goodman,
I have enjoyed reading your articles since discovering The Beacon.
I am sorry to hear that your MM has progressed to Extramedullary. My husband Tom's MM progressed to Extramedullary 4 months after his initial diagnosis.
I will include you and your family in my prayers tonight.
Michelle
Courage and strength, Arnie... it's a set-back, but you have the will and knowledge to fight smart.
Dear Arnie - - I thank you for sharing your story. If anyone can go through this - successfully and with flying colours. I know you can. I am keeping you in my prayers for a complete remission of myeloma.
You are my hero!
Your story has touched all who have read it. I am personally sending up a prayer for you. You are an inspiration to many and a trail blazer for those who have not had to deal whit all of the things that you have had to deal with. Your story has really touched my heart very deeply as I travel down this road behind you.
Hello Arnie, I too send my best wishes for dealing with your MM challenge, which is formidable. You sure deserve a break! At least the sinus pain and swelling have subsided for you. I'm sure you will consider Pomalyst as part of your treatment, now that it is approved and available. A monoclonal antibody like elotuzumab may make it more targeted and effective, but it is difficult to get outside of a clinical trial. Balancing just enough GVHD to give you a therapeutic advantage certainly makes sense.
So your journey continues, sooner than expected. Thank you for keeping us abreast of your status. The entire Beacon community is standing by you with good thoughts and prayers!
Dear Arnie, I´m sending my very best wishes to you from Sweden. And many thanks for sharing your story!
Ever since my diagnosis in 2010 I´ve often thought of a song with the following line; "Life is a roller coaster, you´ve just got to ride it." We MM patients often have a very scary one to ride!
I´m five months from my allo and will recieve DLI next week since my kappa/lamda ratio still is outside of the normal range. No GVHD this far........
Just one more thing I have to share...
The song line I more often think about is actually "Don´t worry, be happy".
And that is a challenge for someone like me that belongs to the 30% of the population that suffers from anxiety disorders! :))
Thanks everyone for your thoughts and wishes. Pomalyst is certainly an option to consider however the effect on GVH after allo transplant has not been studied and could be a big issue. Asa anxious to here how your DLI goes. That could be an option as well. Finishing radiation today and will see what my labs look like next week. Thanks everyone
Our thoughts are with you, Dr. Goodman, as you fight against myeloma.
Hey, Arnie! Nothing there you didn't suspect was coming when we talked a while back. I want Arnie's readers to know what a myeloma warrior Arnie is! The guy is even more incredible when you meet and speak to him in person. Knowledgeable, personable and approachable. And he fights so hard! I'm convinced most others would have succumbed to his aggressive form of multiple myeloma long before now. So glad the radiation worked for you--and the pain is gone! 2013 is going to be a good year for you, my friend!
Hi Arnie,
Sorry to hear about the latest development, hopefully it will turn out to be a minor setback. Prior to my transplant my allo specialist told me about one of his patients that had extramedullary mm & once they had "zapped" it the patient was in remission (prior to zapping the patients bm was clear but blood counts were showing a level of paraprotein). His extramedullary mm had taken off out of the bone like rats abandoning a sinking ship. I am hoping this will be same for you. Keep strong!
Dear Arnie, i wait for your column, they are very powerful emotionally as if you are negotiating and bargaining with death and also incredibly informative, honestly better than my wife doctors. i have responded to your column before, i am a caregiver and my wife will be going through allogeneic transplant soon.
All the best, i feel your strength and courage in facing your MYELOMA.
Raad
Thanks Pat and Libby. Definitely hoping for a better 2013. Libby I think you hit the nail on the head. I hope that this is the only site of extramedulary disease and that radiation will take care of it. Will see soon enough if my m spike comes back down. Raad happy to talk
Hi Arnie,
I have been reading your articles and wish you the best. It seems that you and I had our transplants at about the same time. I had a haplo allo preformed on me at Johns Hopkins on July 3, 2012. Other than GVH I have been fairly healthy since the transplant. I wish you the best and hope you have a speedy recovery from your issues. As you know allo's are a completely diferent bird that auto's. Good luck.
Arnold,
I can't thank you enough for your factual accounting of your situation. You have great bedside manner--even in a forum.
I think about you and your situation often. We are all pulling for you.
Take care, Stann
Arnie, I had to write a little message to wish you well and to let you know that I too am recovering from multiple myeloma in my sinus cavity, at the base of the skull and pressing on the brain. It started just over a year ago, while I was undergoing spinal surgery where titanium rods were placed in my weakening spine, and I began having severe temple pain, followed by sinus infection. Antibiotics only took the edge off the problem, and I was left with numbness and pain. Over the next 4 months I experienced extreme pain in my head. Around the same time my femur broke through disease. I then had a 3 hour biopsy on the sinus which revealed myeloma. At this time a ct scan picked up many large tumors throughout my body. It was decided that I needed to start chemo again. Since I responded so well in the past to Velcade, that's what I began along with radiation to my sinus. It's been almost a year, just finished 9 cycles of Velcade, and my latest MRI done in Dec., showed remarkable tumor shrinkage everywhere in my body, with just a tiny bit of tissue left in the sinus. The nerve along my eye and nose, is almost back to normal with just a bit of numbness left, and I can almost open my mouth normally again. Long term therapy for me will be a velcade maintenance program which I soon will begin. I've had mm for 11 years, and sad that I've reached this stage in my disease, but on the other hand, happy that Velcade works for me. I wish you every success in your treatment as well. Best of luck!!
Arnie, I am catching up on my column reading and have read this one over 2 or 3 times and sent it on to friends as well. You lay out the hard reality of your situation in understandable, and honest terms, which makes for powerful reading. I hope 2013 offers you some clear paths for treatment and some good results.
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