Big Sis In Burgundy: R Is For Remission

First, I must thank all of you for your interest in my first column, “My Sister Has What?!?!?” I was surprised and humbled to receive the news that it was one of the Beacon’s top columns for 2011.
However, the very best news of the last seven days was the news of my sister Deana’s remission.
So many friends on the multiple myeloma journey have said that you’ll never forget the day you were told you were in remission. I doubt we ever will – January 25, 2012.
Just nine weeks after Deana’s stem cell transplant and nine months after her initial diagnosis, we have this demon where we want it. I truly feel that my birthday gift was delivered a week early – I could not think of anything I desired more.
The battle is far from over, though. As we all know, our efforts must continue until a cure is found.
While my other sister Darrie and I were whooping it up at the news of remission and Deana’s husband Chris had a look of relief on his face, Deana remained a bit skeptical.
Deana read the report indicating a low level presence of myeloma and felt a bit discouraged. We quickly reminded her that since there is no cure at present, there will always be a low level presence in her blood – but a low level is what we want…and need.
Deana’s oncologist Dr. Agha recommended maintenance therapy, which Deana had not been in support of when it had been previously discussed. She wants to be done with this and definitely does not want to take any more pills.
As Dr. Agha laid out his reasoning for this recommendation, Deana was either swayed or knew that we’d pressure her to at least give it a try.
The maintenance therapy will be 10 mg of Revlimid (lenalidomide), three weeks on, one week off. She’ll also take dexamethasone (Decadron), which we assured her is going to make her really buff.
We are set to see Dr. Agha again on March 7.
In the six weeks until our next appointment, I plan to research this particular maintenance therapy extensively. Dr. Agha seemed surprised at my lack of questions on Wednesday, but I had decided to adopt the wait-and-see approach. It didn’t seem sensible to prepare a litany of questions for outcomes and next steps that were unknown.
Fortunately, there’s a teleconference on Thursday, February 2, to review the key findings of December’s American Society of Hematology (ASH) meeting. It is my understanding that Revlimid maintenance was discussed in detail at ASH, so I am really looking forward to learning more. (In depth summaries and analyses of the ASH proceedings can also be found in the Beacon’s ASH coverage.)
In the meantime, now that Deana has no restrictions whatsoever, I enrolled us in a pasta making class at an adorable Italian bistro inPittsburgh’s Strip District for the evening of March 6. We are going to have fun from here on out.
We continue to be so grateful for the many organizations we are now part of, whether in person or online.
Deana is enjoying her guided relaxation classes and support group meetings at Gilda’s Club, where she has also obtained some terrific books, including “The Yoga of Relationships.” She says this book has helped her gain some wonderful perspective.
I am thankful for the new friends I have made through the Atlanta Area Multiple Myeloma Support Group and regret that my schedule is not allowing me to participate as actively as I’d like.
There’s also the great work being done by both the International Myeloma Foundation and the Multiple Myeloma Research Foundation. Again, I wish that I were able to contribute more to the outstanding activities of both groups, whose efforts to date most certainly are a factor in Deana’s progress.
I am also so grateful for The Myeloma Beacon and the community it provides. The thoughts of my fellow columnists, reader responses to columns, and the information about the medical side of multiple myeloma have been tremendously helpful.
As a child, I loved all of the alphabet books that attributed a word to each letter, so I couldn’t resist titling this article “R Is For Remission.” If you or your loved one is not to this point yet, I hold good thoughts and send energy your way with the hope that you too will soon get the news you desire.
Deborah Dietzler is a columnist at The Myeloma Beacon. Her sister Deana has multiple myeloma.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Tell your sister not to worry about the maintenance therapy. This is the regiment I was put on when I was diagnosed with MM in May 2009. I was on it till Feb 2010 when a bone marrow biopsy should that I was cancer free. The dex does make you a bit jittery but I did lose a lot of weight, which I needed. I have been off the Rev/Dex since Feb 2010 and according to my Free Light Chain Assay I am still cancer free, but just to be sure I am goign to talk my oncologist into doing another biopsy to verify it. If that shows any sign of the cancer then I will ask to get back on the Rev/Dex to see if we can knock it out again.
That is awesome news! i am so happy for you and your family to have achieved such good results, and hope they stay that way too!
Since Jan. 25 was Robert Burns day, I found one of his more cheerful stanzas to share with you...
'Of a' the airts the wind can blaw,
I dearly like the west,
For there the bonnie lassie lives,
The lassie I lo'e best:
There's wild woods grow, and rivers row,
And mony a hill between;
But day and night my fancy's flight
Is ever wi' my Jean.'
Thanks, Deborah. My husband is scheduled for his 100th day post-SCT visit next week. What an encouraging post!
Thank you for the articles I find on the Beacon. My diagnosis was last Friday. The doctor recommended initial treatment with Velcade, under the skin which was recently approved by the FDA, Dexamethasone, and Zometa. I am supposed to receive a call from his office when he gets approval. I am 69 years old. I have 8 children and their spouses, 15 grandchildren. I have been reading about alternative approaches which include curcumin, juicing, raw foods. I have faith in God and had thought in the past that if I were ever to contact something more serious (I've had hepatitis c for about 40 years without treatment) that I would trust God to heal me through natural means. I have been following several blogs the past 7 weeks and i'm glad they were there. It gave me an idea as to what may be in my future. Thank you for the opportunity to post.
Congrats on the remission.
I see the recommendation is that your sis go on maintenance therapy. Do you know what the rational is for this? I posted on the forum a few days ago,
http://myelomabeacon.com/forum/post-asct-treatments-yes-or-no-t847.html
asking about this issue, and remain curious as to the logic ... I am not scheduled for maintenance even tho I too am in partial response remission.
Yay Remission!
Yes yes remission. Congrats, that is awesome news. I just had my "new birthday" 1 year check up. All is good. I am still in remission. I am not on any maintenance therapy. But that is me. One other not to think about, I have to have all new immunization shots again. Even the ones we had as kids. Since my immune system is "new" I guess that makes sense. I have to have them over the next couple of years.
Good luck to you
"Life isn't waiting for the storm to pass, it is learning to dance in the rain"
Such fantastic news! You made my day!
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