Pat’s Place: What a Wonderful Word – Remission!
Monday was a big day for me.
After undergoing 36 consecutive weeks of Revlimid, Velcade, and dexamethasone therapy since my stem cell transplant, I was hoping that Monday would be the day I could officially begin my easier-to-tolerate maintenance regimen.
Combination therapy with Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron), known as RVD, had been tough for me to take over the last few months. My platelet and white blood cell counts had been low and continued to edge down. I was sore and out-of-sorts. My body was screaming for a break!
Things have been difficult since my autologous stem cell transplant one year ago.
I had used RVD as induction therapy prior to my transplant. But it hadn’t bothered me as much as it does now, post-transplant.
Since my transplant didn’t reduce my M-spike (monoclonal protein level) – it actually went-up instead of dropping – my doctors had no choice but to try RVD again.
The good news is that RVD is working! My M-spike has dropped like a stone. And after nine long, difficult months, it almost went away.
I have been wanting to cut back my doses and to drop the dexamethasone. But my myeloma specialist, Dr. Melissa Alsina, and my medical oncologist, Dr. Vikas Malhotra, both agreed that in order to do that, my myeloma needs to be stable for at least three months.
Monday was the big day! Would my myeloma remain stable, hovering around the 0.1 mark? Or would it start inching back up?
I hadn’t seen Dr. Alsina for three long months, so I was anxious to learn just where I stood. We started discussing why my bone and muscle pain might be a bit worse lately, and why my peripheral neuropathy symptoms (pain, tingling, and loss of sensation in the extremities) had continued to progress.
Ten minutes into our meeting, Dr. Alsina looked down at my chart and said softly, “I see you are in remission.”
Remission? Really?
“Your M-spike is gone. Let’s talk about what we should do for maintenance.”
Gone? Dr. Alsina had buried the lead!
Labs run by both Dr. Alsina and Dr. Malhotra no longer showed any evidence of active multiple myeloma. My M-spike read “zero” in both lab reports.
I noticed that Dr. Alsina used the word “remission,” not complete response (CR). In order to confirm that I was indeed in CR, I would need a bone marrow biopsy that showed “no myeloma cells present,” along with fewer than 5 percent plasma cells.
“But whether you are in CR or not, it won’t change my maintenance therapy recommendation for you,” she said.
Since I have very hard bones, my bone marrow biopsies are always sedated, so undergoing a bone marrow biopsy is a big deal.
I agreed. “I like that about you, doctor. You don’t order unnecessary tests.”
So what will by maintenance therapy be?
Currently, I am taking 10 mg of Revlimid for three weeks, followed by one week off. Then Velcade once a week for four weeks, followed by two weeks off. Finally, 40 mg of dexamethasone every Wednesday.
Dr. Alsina's recommendation doesn't change things up much. Revlimid therapy stays the same, although if my platelets and white blood cell counts continue to drop, she may order the dose reduced to 5 mg. My Velcade schedule is a bit better: once a week for four weeks, then four weeks off instead of two.
But best of all, no dex! Which makes sense, because studies I have read imply that dexamethasone becomes less effective over extended periods of time.
So that’s it! I hadn’t entered our meeting hoping for or focusing on my prospects for achieving remission. It had all been about being able to stop my toxic RVD therapy.
But after hearing that magic word – Remission – I found myself smiling inside and out.
I know remission is only temporary. And that I will need maintenance therapy to help me stay there as long as possible. But for now, no worries!
For a long-suffering multiple myeloma patient, it doesn’t get much better than this.
For all of you who have yet to hear the words, “You’re in remission,” may you experience this hopeful feeling very soon.
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 .
Wow. Way to go Pat! Good job!
It truly is a wonderful word - what great news!
Pat! GR8 news! I'm so happy for you. You have made my day.
After reading this I will be smiling all day! I am sure no DEX will equal better QOL.
Fantastic news Pat! My father is on partial remission and your story is one of the first ones we read about when he was diagnosed with MM.
Very happy for you
Congratulations and God bless! I am on a similar maintenance regimen (although I take Velcade every other week), and find the treatment much more tolerable without the Dex - Hope you find the same.
Praise God for this wonderful VICTORY!! I may not post much anymore, but I always rejoice with everyone's good news and emphathize when the news is not as good. My own sweet mother continues to do very well on velcade/dex.
Pat, you will remain in my thoughts and prayers for a VERY lengthy remission!! =)
Best wishes Pat...I am so happy for you that your health is now back on an 'even keel'. You do so much to help others through your column and thru your really professional blog..you have a lot of friends cheering for you!
I'm smiling and crying. We are so happy for you and your wife. Nine months on all that stuff! Oh my!
Wow Pat. What a roller coaster you and Patti have been on for the last year. Congratulations to you and the medical professionals. We'll continue to pray for you and Patti and wish you a long, pain-free remission. Keep writing (and smiling)!
Congratulations & so happy for you & Patti! I meet with transplant dr. end of august to go over sct results and decide on maintenance!
Congratulations Pat, and bless God for success. Though we know ,as you said it may be only temporary, I choose to call them "Bumps in the Road". Will also be praying for you for CR. Someone has to be the first for Cure. I believe it is closer than we think.
Praise God! Don't know you personally but happy for you or anybody that gets remission. Enjoy life, you've been through alot.
How kind, everyone! I'm in L.A. for a support group meeting tonight (I will be celebrating with 30 or 40 new friends!) But I can't wait to get home and share all of your comments with Pattie. I'm sure we will have a good cry together!
WooHoo!! What great news, particularly after the dissapointment with the SCT.
I am so happy for you. May your remission be unending. I understand you will see our friend, Andy, when you are at the LA support group.
Awesome news, Pat, and may it last for an eternity!
Pat,
This is grat news! Here is hoping that the break on the velcade will reduce you neuropathy. I know that has been a struggle. The break from the Dex is the best news. That is the one drug that kicks a lot of our buts.
Ron
Wow, Pat....that is AMAZING news! When I think back over the past 12 months or so and everything you've gone through while still pushing hard to do what you do for the MM patient/caregiver community this news is already making the "smoke get in my eyes" as some old song used to say. Yeah....you be kickin' em and taking names!
Best, S.
Congratulations Pat! If this was an Olympic event, you would earn gold as the star MM patient. Enjoy a long PFS with great QOL, as our logo says. How about a visit to Oregon? No drought or extreme heat here! I share your gratefulness for enjoying life to the fullest.
Wow Pat,
That is just the best news any of us can hear!
Enjoy and. Relax!
Hope you have a great celebration with Pattie!
Christina
That's great news, Pat! So glad to hear it...
Hooray Pat Killingsworth!
Congratulations, Pat!!! I, too, enjoy Revlimid without the Dex. =)
Over 20 congratulatory comments! I'm speechless--and as you have probably already guessed, that doesn't happen very often! I'm truly blessed to have so many dear friends! Hope to meet you all some day...
Having heard the words complete remission myself, a month ago, I know how you are feeling! I try not to think about the future of my MM. I live one day at a time and make the most of each one, even if it is staying in my PJ's all day. No guilt here! Glad you got to hear those words! Best to you and Pattie.
Way to go Pat! I regularly follow your column and know you have been through a lot! This is wonderful news. I hope it is lengthy and I will meditate it through! I too, have been on RVD for over a year and last week reached remission. Early on lost the m-spike, so bone marrow biopsy was the only way to really know how things were going. Had one a few weeks ago, along with a ton of blood work...myeloma cancerous plasma cells at .01!!! AND my cyto genetics of 13q deletion translocation...had disappeared!?! Disappeared! WOW. I started at 95% cancerous cells in my bone marrow, and now it's .01. I am so incredibly grateful to the Myeloma community for all their research and work!! But I do not have CR, just like you...only remission...and still on rev for maintinance, but tapering off DEX...yea!!! and I had to stop Velcade a few months back due to severe pain in my right hand neuropathy.
Well, may we fly as long as we can...look forward to your next column...
Jan
dx 1/2011
Congrats on your good news, Barbara! You too, Jan! Everyone's support and kind words mean so much to me!
My sincere congratulations.
Also thanks to everyone at the Myeloma Beacon for your insightful articles.
Gil Alderson
Thanks, Gil! Glad to help...
Pat,
I can't tell you how happy I am for you. I know how you felt when you heard the word "Remission" .......
I heard the same word from my doctor over a year ago and I'm hanging in there still......
You're my Hero, Pat....God Bless You !
John
So glad that you are doing well, too. Way to go John! Hearing from you made my day!
Pat, Great News!
My prayers have been answered. While I count my blessings, smoldering and symptom free, I continue to offer prayers, encouragement and support to those who are dealing with the everyday challenges of active MM. Hang in there...
Fred
Wonderful, Fred! Enjoy!
Hi Pat,
I went for the stem cell transplamt. It did not go to 0 but it went from 300 to 200 and for seven months it has been stable. In one week, I am going to use a injection calls Valcade.
I am pray for you to have compleate healing. And for me , I know that for God all thing are posible.
Thank you for helping us with your corage.
May the Lord bless you with his grace and healing.
Thanks so much, Rosura! Make sure you ask for the sub-q form of Velcade, where--like you said--you get an injection and not an infusion (IV). Good luck!
So happy for you, Pat! We all dream for a similar result. Bless you for sharing your journey so thoughtfully and well.
Lydia-
It was difficult getting here--and I'm guessing that it will be difficult to hold-it. But thanks! We are all just doing everything we can to stay alive, right?