Pat’s Place: The Switch
Living with multiple myeloma isn’t easy for a number of reasons. Besides having cancer and dealing with the uncertainty around it, there are hours spent in waiting rooms, along with countless blood draws, tests, and chemotherapy side effects.
But for me, the most difficult part of our new normal is “the switch.”
One minute everything seems fine. Then without warning, someone or something “flips the switch.” Suddenly we’re in pain, battling an infection, hospitalized, or standing nose-to-nose with our own mortality. And it happens all the time.
Let’s stick with the analogy that there are a series of light switches controlling much of our lives since being diagnosed with myeloma. Like lighting in our home, there are different types of switches, and different kinds of lighting.
First, there’s the mood lighting controlled by a sophisticated dimmer switch. For instance, sometimes I’m sore or feel a sharp cramp or twinge of pain—a subtle reminder that I have bone marrow cancer. I may have trouble sleeping because the dexamethasone (Decadron) I’m taking is keeping me up. Or it can be the sharp poke I feel as my oncology nurse starts an IV. By taking pain medication or adjusting the time of day when I take my dexamethasone, I can reach over and dim the light, but I can’t control the on/off part of the switch.
Then every month or so come the flood lights. Light so bright it blinds you. Stunned, you reach for the dimmer switch. But that switch doesn’t control this type of bright, piercing light. Instead, the switch is operated by your oncologist or myeloma specialist when they deliver the big news about your disease to you.
It happened to me again during my latest appointment with my myeloma specialist.
“Pat, your M-spike is back,” she said. “A measurable 0.2 this month.”
FLASH!!! I sat there, blinded and confused.
“But doctor!” I stammered, “10 weeks ago I was in remission, and my M-spike was zero. You said last month’s bone marrow biopsy didn‘t find any myeloma cells…”
See how that works? FLASH!!! Your life has changed in an instant.
Even though the news may not always be bad or may even be good sometimes, you feel the heat and glare of the lights for hours, days, or even weeks before your appointment because you worry about what the results will be.
One minute everything is OK. The next it’s not. Everyone experiences this type of thing from time to time. But this type of on-again, off-again switch of the lights becomes a permanent reality for a myeloma survivor.
Allow me to mix my analogies. Like soap opera fans watching actors lying in each other’s arms, pledging their eternal love and reminding the audience how perfect their lives are, an experienced myeloma survivor knows what’s coming.
FLASH!! An outraged husband hits the light switch and washes away the cheating couple’s euphoria with a flood of light.
Yesterday was a good day. Tomorrow may be OK, too. But when we were diagnosed, someone flipped a switch for the first time. And our lives will never be the same.
For those concerned about my latest results, don’t worry yet. We won’t know how big of a deal the M-spike is for another few months.
The concern, of course, is the short duration of this latest remission. The hope is that it is an anomaly and doesn't signify an exponential shortening of the time between relapses.
In a proactive move, my myeloma specialist decided to change my treatment protocol from maintenance doses of Revlimid (lenalidomide) and Velcade (bortezomib) back to full-dose Revlimid-Velcade-dexamethasone. She suggested starting dexamethasone again and increasing the frequency of my subcutaneous Velcade from four weeks on and four weeks off back to four weeks on and two weeks off.
She will re-test later this 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 .
Dear Pat,
Thank you for sharing. I look forward to your columns.
Good luck.
Lin
Pat,
I really enjoyed this column. The metaphors are so appropriate. Thanks! Cheryl
Well said, Pat.
Sorry to hear about the return of M... it's the bad news we all live waiting for
Thanks, all! And Debbie, try and remember that more often than not, this is just another "bump in the road." (I'm big with the metaphors, aren't I?) Just wish we all weren't so "bumpy!" Hopefully a change in one of the drugs in his therapy - and/or increasing doses or frequency - will yank things around. Dr. Berenson just told me he has had good luck treating OMJ. Consider a second opinion if things don't seem to stabilize...
Hi Pat. What appropriate timing as I read this latest column. We went to our oncologist today and found out my husband's M spike went from .7 and holding with a velcade maintenance plan to 1.4. We are disheartened, to say the least. Our doctor wants us to try the Revlimid approach, but the cost will drive us into the poor house and Dave (my husband) developed a blood clot from it! Our insurance barely pays anything, and the grants only cover so much. He is talking a 21 day cycle (3 weeks on, 1 week off). I don't know what we are going to do. How do YOU deal with the cost of Revlimid? And, please tell us this is not the end of the road already. He had a stem cell transplant in March of this year, and received a very good partial response, and we were feeling pretty good about things. Oh, that is, until he went to the dentist last week and realized he probably also has osteonecrosis - zometa has been stopped. I hate this disease. You are a positive guy, I read your columns all the time. Send some of that "positivity" our way, would you?
God bless.
Dear Pat
Once more, reading your article make me feel as if i wrote it. It is so important that you keep on telling our story to other patients and their families. I am also taking Revlamid for 18 months and for two months i am taking dexamethasone. I can not take Velcade because of the neuropathy it caused me. Since I have taking the dexamethasone it is also keeping me up. Every month when i do the blood test i feel like the my MM is coming again. I do not have anything good to say about my life since three years ago. Beside my 4 wonderful grandchildren. Please keep on writing your column.
Pat, you write what we all know we will have to eventually deal with in this life time of MM. Keep writing your articles, your books and sharing your thoughts and we will keep praying for a cure.
Debbie,
I don't know if you already have this information, but in case you do not I want to share it with you and others. I believe Celgene offers assistance for any Revlimid costs above $100/month depending on your income. I believe the assistance is for income below 100K. Also, Patient Advocate Foundation and LLS offer copay assistance up to 10K each to those whose income is less than 80K. I hope this helps.
Pat,
I appreciate all of your columns. Thank you. I hope your RVD regimen puts M down to 0 quickly!
I am in my 3rd month of RVD maintenance therapy after tandem transplants. I was diagnosed Nov. 2011 when I was 43. Today is my weekly Velcade shot day and my weekly 20 mg. Dex day (thus the late-night post). I am on a 21 day cycle with Revlimid, too.
I am definitely an inexperienced myeloma survivor. I am really hoping and praying for a progression-free survival. I do know the anxiety of facing the labs & doctors, fearing that things may change from remission (or as some say, complete response). I try to just thank those scary thoughts for sharing and let them quickly pass through my mind. I am thankful to be so much better than I was through my treatment and before I was diagnosed. I am so sorry you had to recently be blinded and stunned by more myeloma news. I remember that feeling oh so well 11/10/11. Your posts have encouraged me, though, and have given me hope this last year. I have learned so much and appreciate your wisdom, attitude and honesty.
Again, thank you for sharing. I wish you all the best. Now, If my head hits the pillow and doesn't quickly shut off, I'll be taking a Lorazepam to try to sleep. I get to waken early to take 10 year old daughter to school!
Thank you Kathy and Beth!
Itzhak, I understand. I really do!
I totally agree, FLASH.....your life is changed forever. ...
Sometimes it good coping other days ,not!
Thanks Pat.
Hang in there!
Yep. Just when you think you have it all figured out...
Good to hear from you, George! I appreciate your thoughts. And yes, my doc may be overreacting a bit. But adding 20 mg dex and adding two weeks of Velcade to a six week cycle (four weeks on and two weeks off) wasn't much of a change. Dosing of Rev and Velcade stayed the same. I would like to take a break from Revlimid to give my bone marrow a chance to recover. Time to lobby Dr. Alsina!
Hey Pat, good to hear from you even though the news is not perfect. I wouldn't worry to much about your slight M-Spike. It could stay like that for years to come. Insofar as your previous bone marrow biopsy, the doctors have told me that myeloma cells can hide and mass in different areas of the bones. One month your biopsy could be clean and the next month it could show some myeloma cells and then the next month it could be clean again, because of the testing of different areas. Based on your article, I think, for what it's worth, you are in good shape and the only thing to watch for is that M-Spike rising.
Thanks for your articles and God Bless...:]]
Hey Pat,
Following your survival as MM patient is very informative as it illustrates the vicissitudes of the disease.
I was curious, have you tried Krypolis?
I am getting the sense that the real breaking news is going to be Jakubowiak's trial where he has kept patients on therapy for 12 months. I have often wondered why therapy has been limited to 6-8 cycles as it truly has not given longevity or made significant gains in PFS. I suspect, toxicity was one limiting factor. However, the newer agents have far less toxicity and it is likely that a longer therapy is going to be the key to keeping MM at bay.
It was quite interesting to learn how long Sean has been in consolidation, as well. He went through the induction and tandems then was in a year long consolidation. I beleive this is going to be the biggest turning point for MM and Jakubowiak's data will likely demonstrate that PFS is extended without the use of HDT.
I know you likely are headed to Atlanta for ASH....looking forward to hearing your updates and that your your latest therapy option, to use your analogy, knocks the lights out again.
I am at ASH right now, Suzie! We are trying to stick-with what's working for as long as we can. Will try Kyprolis and Actimid (pomalidomide) eventually, I'm sure.
Pat,
Your protocal makes sense to me. Stay with what works until a relapse then try something different. I have been on VRD (now just VD) for over 3 years and seems to be working. I am glad that new drugs are finnally coming on line so that if I relapse there is something else to turn to. I will be intereseted in what comes out of ASH. Sounds like a lot of new drugs in trials.
Ron
I was just wondering, we have seen a blog from someone who is using curcumin and she says it is working wonders. Has anyone else used this or heard of it?
Hi Ron. Yes, your review is correct except for one thing. Keeping the "Ride the horse until it drops" theory in mind, if a drug combo starts slipping--and you aren't taking full doses or max frequency--maybe try that first? Exactly what my doc suggested and I have gone back to four weeks on and two weeks of Velcade and added 20 mg dex back into the mix.
Debbie, maybe someone from the Beacon staff can help with a specific column about curcumin. But a lot of curcumin info available. One of the only supplements with a proven anti-cancer track record. Also anti-inflammatory. Lots of patients take it, with or without permission from their doctors. Check with your doc and see what he or she says. If no opinion or problem using it, most patients take between 2 and 8 gm daily.
Hi Pat,
Sorry to hear that you had to experience another one of those glaring lights on moments. They truly suck. But we pick ourselves up and keep on going as you are doing.
One of my favourite songs since embarking on my myeloma journey is "Tubthumping" by Chumbawamba. 80% of the lyrics are
"I get knocked, down but I get up again
You're never gonna keep me down". It is great to hear my family singing it with me - all out of tune of course!
Take care & hopefully your M-spike will go back down.
I remember that song! Now I can't get the tune out of my head. Thanks (I think?)Libby!
Pat
as a care giver I read your column mostly to see what my wife will be expecting in coming months. 60 days ago she had her autologous stem cell transplantation-first m protein (6 weeks after) was 0.80. So she is back on Revlimid and exploring the new medication Kyprolis. Her Dr decided to abandon the 2nd stem cell based on MRI.
I was wondering if any of the readers have any experience with Kyprolis , if so can you describe the side effects and general thought?
Regards
Hello Freidoon,
You can find all the Beacon's articles about Kyprolis here:
http://www.myelomabeacon.com/tag/kyprolis/
Many of those articles have comments about the experiences Beacon readers have had while being treated with Kyprolis.
There also is discussion of the topic in the Beacon's discussion forum. See, for example, the discussion threads that come up with the search of the forum discussions shown here: http://bit.ly/UYQ87Q
Good luck!
So glad you are doing well! I love the "eating a few platelets for desert." line. Keep smiling!
pat
I am at present time in clincal trial that is using genetically engineered T-cells. it is being conducted thru the unversity of MD. and the university of PA. i had my 2nd transplant jan. 2012. it is a targeted therapy where myoloma cells are hunted down and destroyed just like in pac-man game. I know that to make light of this stuff is crazy but it is my way of coping. I wear a hat purchase by my guys at work that on the front says nano t-cell and on the back "pac-man"
implant
Iam not taking any maint. drugs since the transplant . i still have some myoloma cells but seems to be doing the job. the only problem i am having is my platelet count is at 30 and won't go up or down. I told my ocon. that the t-cells are eating my myoloma and taking a few platelets for desert. tell all your readers to take heart and try to be positive. my original prognois was five years and now i am at ten and counting. i know its hard but we all can do it if we stick together and fight any way can to win.
marty
Marty
my onc is at U OF P and has been bringing up the T cell pac man approach.is there anyway i can contact you
God Bless
Al
This T-cell therapy has been successful in 9 CLL patients (leukemia) at the U Penn (Dr. Carl June) at Abramson Cancer Center.
No question immunotherapy (a very broad term) is the future - if nothing else to help soften-up myeloma cells so more traditional therapies will work better...
to alpass
i go jan 6 2013 for my restageing.please call my cell phone after jan 15 and i will let you know how things are working out.
my cell phone is 301 717 8089. if i don't answer let your number and i will contact you.
marty
I'm not always that organized, but I will make a note of that, Marty. Good luck and thanks!
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