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A Patient's Blog: Figuring Out a Maintenance Strategy

In my last post, I wrote a bit about my background and set the stage for an important patient goal I feel very strongly about.
Since many multiple myeloma patients are living up to a decade or more, I believe that it is vitally important to work with your healthcare team in creating a long-term treatment plan.

To review, most doctors don't feel comfortable doing this. They like to take things one step at a time and deal with whatever happens next later. In my view, this can be a big, big mistake. Because while taking things one day or one treatment at a time can help ease a patient's anxiety, it doesn't allow your doctors to plan today's treatments to complement those that a patient may need in the future.

My case is a perfect example of this.  Let me share it with you.

More and more myeloma patients are choosing to delay their auto stem cell transplants until first relapse--or later. That's the path I chose over four years ago.

I still feel that I made the right decision by waiting. But after undergoing my first autologous SCT last July, I am discovering a few factors that my doctors and I never considered back in 2007.

We harvested enough stem cells for three possible transplants.  Revlimid worked like magic for me.  It took me less than a year for Revlimid and dexamethasone to bring me to a complete response (CR) that lasted over three years.

Wonderful!  It wasn't always easy.  My peripheral neuropathy (PN) slowly worsened.  And my neutrophil (ANC) counts dropped to very low levels and stayed there.  But hard to complain about three years of CR!

But--and there is a but--no one anticipated what I would do after I eventually underwent a SCT.

Unfortunately, my transplant didn't go as planned.  My M-spike actually jumped significantly at the three-month mark.  My transplant had made things worse!

But it wasn't a total loss.  My RVD therapy (Revlimid, Velcade and dex) worked quite well after the fact as a consolidation therapy.  As I write this today, one lab shows that I have no M-spike.  Another lab shows a 0.1.  Good.  Very good!

But now it is time to figure out my maintenance strategy.  Trouble is, Revlimid is the only drug with a proven maintenance track record.  And although my transplant may, in fact, re-set my myeloma's susceptibility to Revlimid, it can't be counted on as my primary maintenance agent.

So I will use Velcade, right?  But as of now, no one has any published data about when and how often to use it. (Editor's note: Dr. Heinz Ludwig and other members of the IMF's International Myeloma Working Group referred to Velcade maintenance in this article published in the journal "Blood" on Jan. 23, 2012.) And the company can't say.

I look forward to hearing answers to questions about Velcade maintenance during the June 13, 2012 IMWG Teleconference Series presentation "Making Sense of Treatment." Dr. Brian Durie says that Velcade maintenance will be one of the topics debated at this inaugural event by a discussion panel that includes him, Dr. Antonio Palumbo, Dr. Paul Richardson and Dr. Jes�s San-Miguel.

Had my original specialist anticipated the maintenance quandary I find myself in today, maybe I would have started on Velcade and dex, or RVD for induction and Velcade for maintenance after I achieved CR. 

So, that leaves my myeloma specialist and medical oncologist--and me of course, being an informed and actively involved patient--to put our heads together to help come-up with a maintenance plan.

Remember how I said doctors don't like to plan ahead?  One way to help get them to participate is to be working with more than one doctor--strength in numbers, maybe?
In an upcoming post, I will share their thoughts--and the plan that we have set together.

Feel good and keep smiling!



I was diagnosed with MGUS in 2011...went with the "wait and see" plan until my M-1 spike reached 4.8 six months ago...I have been on 25 MG Revlimid and 40 MG Dexamethasone...but this past month I've been off both because I had sinusitis, thrush in my mouth and throat, bronchial spasms, and a rash from my neck down. The problem is I don't know which medication caused the rash...the meds prescribed to treat the sinus infection and coughing or the Revlimid and Dexametasone. I go back to the oncologist next week to see if I can start back on Rev and Dex...I'm hoping I can because it has helped so much. Anyone else have a reaction to Rev and Dex?

I just had my asct in September after being diagnosed and battling mm for about 15 months.
They got me down to less than 5% though I had to have a plasmacytoma treated in July of 2013. I am starting on velcade and zometa and hoping for a good maintenance so I can work a few more years and try to stay productive.

Hi, I am just in my second cycle for MM and doing very well. I am looking for end of life info trying to plan out if a nursing home will be in the picture toward the end. Should I plan my funds for an extended stay or just a short hospice?

How old were you when diagnosed with MM? I am 78 & diagnosed 4months ago.Currently doing well on Rev, dex, Zometa. What are my chances of getting a auto transplant?

Bob Adamski

Merry Christmas.

Now to the 12 month post Multiple Myeloma stem cell transplant test results for December 5th, 2012.

All test results are excellent with all important measurements indicating how successful the transplant was in controlling the blood plasma cell cancer as thumbs up!!!!

The transplant has re-booted my immune system and reset the production of the abnormal blood plasma cells.

The production of the abnormal plasma cells and the related broken antibodies has been lowered significantly, however the disease with never be fully eliminated, just controlled as best as possible.

My M-Protein antibody measurement is pegged at a very low 0.5 and the bone marrow biopsy shows a very low 5% detection of the abnormal plasma cell antibodies within the marrow of the bones.

Ah, very good news.

I'm currently on 2.5 mg per day Revlimid maintenance as part of a 3 year nation wide study.

Be free to contact me if you have further questions about my condition.

Doctors have just given me my first set of childhood immunization vaccines one year after the transplant with more to come one year later in 2014.

So, enjoy the holiday season!!!!

Was good to hear from everyone. I was diagnosed in 2003 when a plazma cytoma (tumor) was found in my upper right chest ,between my rib and lungs growing off my rib bones and which destroyed part of them. Had radiation and it destroyed the tumor. I found I did have myeloma--indicator is my Kappa/lambda lightchain. I was on Dex and ? In 2004 I had my stem cells collected for 2 trans, but I chose not to have the first trans.until jan 2005. in the mean time I was on prednisone 50 mg a day. didn't like the side effects but it kept me in remission. My 2005 transplant was a success. chose not to have maint. drugs, except for zometa, and the remission lasted for 5+ years. I didnt take zometa after 2004. In 2010 I was seeing a return and this time it attacked my spine,so in 2011 I had radiation to my vertibre neck#1 and 2 and some in my chest. My neck feels very weak. I had my sec. transplant in Nov. in Seattle. It was an easy trans. part in do to their research how to ease the trama to the mouth and digestive system. I am now on the maint. drug Valcade-- a shot every two weeks and zometa once a month which I feel does alot of good. I found I couldn't take Remlavid cuz i'm allergic. So that is my story. I wish everyone blessings of good remissions and improving health. When I read my history I became depressed but that reminds us that we take one day at a time, and try to make the best decisions that we can. Just heard there is a new drug on the market Onyx's Kyprolis (carfilzomib) that might bring new hope to some. Judy

I was diagnosed 10/11, stage 3-4 MM, 2 1/2" hole in my right hip bone, compression fracture T4-5,stress fracture left femur and tumor on my liver. I thought I needed lower back surgery L45,S1. Did 8 months of Val/Dex/and added 200mg Thalidomide in month 3. Also Zometa. By May 2012 in was in CR. Had stem cells harvested and stored by SCCA in Seattle. I am now on Rev for maintenance. Started with 10 mg. Too much fatigue, sweating (not sure where that's from but it's worse since I started Rev) and depression. Going to 5 mg Rev this week, 28 days, no break. I pray that God will leat me enjoy CR for a few years at least! Good luck and God's grace to all of you!

There are so many factors in choosing a treatment--mainly because we are individuals and we can respond differently to the same drug and/or different dosages that someone else is taking. My induction therapy included Velcade/Thalidomide/Dex. I had four rounds of this and was declared a complete responder. My maintenance was Thalidomide/Dex for a few months, then was switched to Revlimid. I asked to be taken off the steroids, with which my doctor was in agreement (yea!). I have been on Revlimid and baby aspirin (and a few supplements) since October of 2008. I have not had a SCT as of yet. My sister, who is a radiologist and who specializes in breast imaging (and deals with a lot of breast cancer), does not want me to go off the maintenance, as she believes the myeloma could come back worse or as a whole different animal and not respond to the drugs at all. The reason she gives is that cancer is like a virus and mutates, which is why it can become resistant to drugs. Agree or disagree, that is her take on it and at this point, my doctor doesn't want me to stop taking it either. Unfortunately, it's a catch 22, because I often think about the secondary cancer chance, but it is what it is and this is where I am. I trust the Lord and have to leave it in His hands.

I was diagnosed with mm a year and 3/4 ago. Treated with Velcadem Malthalon, and steroids. Zometa for almost a year.
My mp was at 8000. I had two compression fractures in my back and 8 broken ribs. Wore a body cast for several months. First go around with sc collection was a bust. Couldn't give enough because I was given malthalon along with the velcade initially. Doctor said I would not be here had he not done that. I was in the worst stage you could have. Low and behold,my numbers turned around. mp went down to 3-4! No M spike for about 8 months now. Had a second sc collection a few months ago and was able to give enough for 2 sct. Nueropathy in feet not so good because of the revlemid, but gabapentin helps that. I find I am tired and have alot of back pain, but living through it. I sell real estate and have been busier in the last 2 years than my whole career. Even in a body cast! :):) TOTALLY BY THE GRACE OF GOD! And by the way, both of my Oncolog. agree:One said, short of a miracle, we don't know what to tell you! This is not SHORT of a miracle. I am one!

I feel very lucky that my hematologist was planning long-term from the day of my diagnosis, which occurred during emergency surgery for what was thought to be a minor condition. I was in no condition to absorb the implications or evaluate options, but he chose a treatment path that led to ASCT and then maintenance.

I received Velcade, Doxil and dex as frontline therapy, starting in November, 2010. The response was great and I had a CR after three rounds. ASCT followed in March, 2011, with Melphalan. Subsequently I've been on Revlimid, which has been a bit of a struggle. I think my doc thinks I'm a wuss, but frequent diarrhea has been an issue, even at 5 mg for 21 days and 7 off. I'm thinking of cutting it to 14 on, 7 off and trying a higher dose. So far, though, no one knows what is most effective, and the most consistent advice I get is to just keep taking it any way I can.

I work also, although I've never gone back full time. I was 63 at diagnosis and in pretty good shape otherwise, although I do have a history of DVT and colitis.

I also get Zometa monthly at least until 2 years. This also has strong anti-cancer properties, so I feel like I've had the best of everything and been very fortunate to respond well.

Hello again Pat,
In reading many patient stories of diagnosis and treatments, along with talking to my hemotologist/oncologist, we know MM affects everyone differently. The more I read, I see the treatments are similar from patient to patient only in different sequence. I started with Velcade once a week on the way home from work backed up with dex. The dex was horrible and eventually I refused to take it and still won't. I stopped responding to Velcade and was switched to 25mgs of Revlimid daily until the protein levels were low enough for my tandem ASCT. (working full time up until transplant). I believe age and baseline health has everything to do with sucessful treatment both before and after transplant. I was 54 when diagnosed during my annual physical, active and in good physical condition, and what I thought was good health. They found my hemoglobin at 7.3, the myeloma protiens were in excess of 8300mgs and fast approaching kidney failure.
The year before all of my labs were normal. Although I still have NP in my feet from Velcade, my current maintenance program is 10mgs of Revlimid every other day,no dex. I am in a deep remission still working full time and keeping physically active. For the younger patient, please stay as physically active as possible, within reason of course.

I was diagnosed in October, 2000 with MM and had previously had MGUS for 2 or 3 years. I had a similar problem with dexamethasone and had to stop taking it. Dr. Berenson in Los Angeles recommended that I switch to one of the other steroids (there are 5, I think). So, I have been taking Medrol instead and it's worked fine for me without those annoying side effects. The sterpids ar of slighly diffefrent strength, so you can't just switch mg for mg. It will probably be a slightly larger dose to get the same effect.

When I mention this, and although many complain of problems with Dex (neuropathy, etc) I haven't heard of anyone else whose treatment has been managed this way.
Possibly you could contact the IMF or attend one of their educational meetings to get inforfmation on when this might be appropriate.

Good Luck,




Hi Pat: interesting observation on the larger picture planning.
As a case in point, I've completed the 1st 3 month rvd cycle with a VG response.
Next week the discussion will be sct now wait till maintenance isn't working or avoid sct all together and keep working on different drug therapy ( less likely).

My understanding is that it is not currently known whether sct right after rvd vs waiting till remission secedes changes the overall longevity ... Which is THE goal!

In all cases I'm certain the discussion will be about the nearer term benefits and less about a 10 yr best practice view.

Thank you for the ins

Pat ... My story is somewhat similar. I was diagnosed with MM (IgG Lambda)in Nov '06 and proceded with the Velcade/Dex and spot radiation induction treatment, then switched to Thalidomide/DexMeth. At the time I was given 5-6 years. I was not responding satisfactorily to this treatment so in Jan '08 I had an ASCT with High Dose Melphalin at Thompson Cancer Survival in Knoxville, TN. In June '08 I was transferred to UAMS under the care of Dr Barlogie and have been in CR for a year now. He recently said "I will not die from MM" (not sure how he reached that conclusion). Here is my subsequent maintenance history:

Jun '08 - Continued Thalidomide/DexMeth plus Aredia
Mar '09 - Stopped Dex/Meth due to severe PN and weight gain
Jun '09 - Stopped Thalidomide, began Revlimid and Velcade
June '10 - Stopped Velcade, increased Rev to 10 mg/day, continued Aredia

A/O Mar '12 I remain in CR and on 10 mg of Revlimid nightly. Doing well but at 69 years old I wonder how long Ocare will cover the $400 a pill Revlimid? .... Just saying.

Hello Pat,
I have followed your blog on the Myeloma Beacon. My husband had Velcade/Doxil/Dexamethasone for his induction chemo, had tandem transplants, consolidation with Thalidomide/Dex, and started maintenance with Revlimid/Velcade/Dex. He is now on just Velcade/Dex, and his PN has gotten much better. He achieved and has been in CR since his second transplant, with 0 M protein, for the last 2 years. He still battles with a very low WBC and Platelets, but when he gets a break from chemo, before undergoing testing every 6 months, his counts recover well. We cannot wait for him to be done with maintenance, which is expected to be for 3 years total. I have to admit though, we also are a bit anxious about not leaving any soldiers on the front lines, in case the enemy was to pop up.
I pray you make the best decision for your treatment, and wish you all the best in maintaining remission!

I went thru the Valcade in low dose. My levels went up and down but slowly were going up. (bad) So, since they figured I was handling the low dose fine that they would go heavier dose. I got so sick, throwing up for 12 hours straight after my second treatment that week. Ended up in the hospital for 4 days in Feb. of this year.

So, we went on the chemo pills. I took those without any problems, so I thought. Unfortunately it lowered my white cells so low that I got a blood infection. One of the worst staph infections you could have, deadly. Ended up in the hospital for 10 days at the end of April into May. So now we are on Steriods for now and more than likely Rev later this year.

I have been fortunate. Diagniosed in Nov. 2003, with a Single Autologous Cell transplant in mid 2005. My body wouldn't give up the cells. I was okay until late 2010 but it reared it's ugly head again. As we knew it would.

So, I'm sure it's going to be a fight from here on out.
They wanted to do another Autologous, but I moved from CA to Missouri and I don't have a support staff here for after treatment. Nor can I afford to pay for one.

Well, I hope everyone is doing well. Take care, Have fun, Keep smiling.


For Don,
I don't know where you are in Missouri, but if in the Kansas City area, please look up our Kansas City Multiple Myeloma Family Support Group or email me at pattycake@kc.surewest.net.
Pat N.

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