Mohr’s Myeloma Musings: Shelf Life
In my last column, I wrote about the decision-making process that led me to move forward with a stem cell transplant. I am now just three weeks away from my stem cell transplant, and I am going to share my preparatory experiences for this next stage in my battle with multiple myeloma.
But before doing that, I would like to share a personal reflection.
I have found that during all the stages of my battle with myeloma – from an initial diagnosis of monoclonal gammopathy of undetermined significance (MGUS) that was quickly changed to multiple myeloma, through watchful waiting, initial treatment, and now a stem cell transplant – I fell into a state of being comfortable with my condition at each stage of my disease.
How do I explain becoming comfortable with progressing through the stages of a disease that is incurable?
I can't. But the fact remains that, at each stage of the progression, I became surprisingly accepting of my condition.
And each state of that complacency always ended up getting shattered by a reality check.
Each one of those reality checks indicates one thing: multiple myeloma is slowly but surely taking control of my life, and the tools we are using to wage this battle have a limited shelf life.
The latest reality check began early one morning two weeks ago when my schedule of pre-tests and consultations for the stem cell transplant arrived by email: two full days of tests and consultations. Later that day, a two hundred-page binder from the James Cancer Center arrived in the mail, giving detailed instructions on how to deal with every aspect of the stem cell procedure.
I remember half-jokingly saying to my wife that evening "I think this stem cell transplant might be a pretty big deal," knowing full well that it is a huge deal.
Our first day of appointments/consultations started early in the morning last Thursday with a financial counselor. She quickly informed us that everything went smoothly with the insurance company's pre-authorization procedure.
By Friday afternoon, I had undergone the following tests: a vein check with the Apheresis Department, workup labs, an EKG, a bone marrow biopsy, an echocardiogram, an arterial blood gas test, a pulmonary function test, and a myeloma skeletal survey.
These tests revealed that I am in good health (apart for having an incurable disease!), which did not surprise me.
Interestingly, the bone marrow biopsy was labeled as "Nurse Practitioner Procedure with Immediate Care Center" on the appointment calendar. We thought that this would be a consultation session that would discuss various procedures involving the nurse practitioner. Little did we know that the "Nurse Practitioner Procedure" was a code word for the bone marrow biopsy!
My blood pressure, which had just been checked at the previous test stop at 125/75, suddenly leapt to 157/95 when taken by the nurse in the Immediate Care Center. I was surprised about that reading because both of my previous bone narrow biopsies had been only minimally painful experiences.
However, my fears were unwarranted as I almost fell asleep during the procedure. At no time did I feel that sharp, radiating pain that one experiences as the sample is withdrawn. The nurse practitioner informed me that this was due to the fact that she was very generous in using local anesthetic lidocaine in numbing the entire area. I can only hope she is on duty when my next bone marrow biopsy is scheduled!
The pulmonary volume test was without question the most unusual test I have ever experienced. Blowing into a device in an enclosed capsule with the respiratory therapist yelling at me "Blow, blow, push, push" was not only unusual, but every bit as demanding physically as the dreaded bone marrow biopsy
In addition to the consultation with the financial counselor, we met with the bone marrow transplant coordinator, had an educational session with one of the nurses who worked on the transplant wing, met with a counselor, and had a final consultation with my oncologist.
During that final consultation, the oncologist told me that my myeloma indicators had stopped the steady, six-month decline and had now plateaued in two consecutive test results. As a result, Revlimid (lenalidomide), which I have been taking since last fall, will be replaced by a new agent if maintenance therapy is pursued post-transplant. What that new drug will be remains to be seen.
This bad news was offset somewhat by the fact that my treatment has been stopped for now and that I will not receive treatment for at least six months after the transplant. This may be overstating things, but seven months without chemo will seem like a new lease on life!
During previous appointments, my oncologist has been adamant about conveying to me that the key to quickening my post-transplant recovery will be for me to be as active as I can during my hospitalization. He really hammered this message home during our final meeting.
I can't express how valuable all these consultations/meetings were for both me and my wife. No matter how much one researches a procedure, the ability to ask questions of those who perform the procedures on a daily basis is far more insightful than what one might read, regardless of the source.
My stem cell transplant is scheduled for June 16. The harvesting of stem cells will take place on June 5 and 6. I am expected to be hospitalized for 16 days. I asked my doctor what the shortest stay was. He replied 11 days. My goal is to be released in 10!
I also asked him what the longest stay was. His response was "You don't want to know!” I quickly moved on to the next question!
Regardless of how long my hospitalization will be, the biggest concern I have now is how long after being released from the hospital it will take for me to return to a normal life.
Interestingly, my doctor informed me that there will be few if any restrictions for me once I’m released. He explained that there is no data that suggests that strictly limiting one's activities once the immune system has sufficiently recovered for a patient to be released from the hospital has any impact on the effectiveness of the transplant or in avoiding complications.
Earlier I used the term "shelf life" in referring to the tools we have at our disposal to battle this disease. The shelf life for watch and wait for me was about 16 months. Revlimid has been taken off the shelf after seven months. It remains to be seen how long I will benefit from a stem cell transplant.
Upon reflection, it seems that proceeding with the transplant was a sound decision in light of the fact that Revlimid is no longer an effective agent for me in achieving remission.
Time will tell, but I am comfortable with where I am heading, and I look forward to sharing my experiences with the stem cell transplant in future columns.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Steve,
My wife and I wish you well with your transplant. My wife had an SCT in February 2012 after an initial treatment of 6 rounds of CTD (cyclophosphamide / thalidomide / dexamethasone) and she is doing great (not on any maintenance therapy), basically nothing we cannot do, so we both have a new lease of life. After Michele was given the OK last week, and told to come back in 5 months, we made the specialists laugh as we had to fit the next appointment in between a couple of holidays. Keep a note of the date you have the transplant, we do, and treat it as an new birthday. Michele is now 27 months old! So from us over on this side of the pond, we wish you all the best, take care, and keep writing!
Steve:
Good article. Wish you well with your transplant. Just wanted to say that we all have an incurable disease, it's called life, just that some of are special and have to deal with multiple myeloma. You were really lucky not feeling the latest bone marrow biopsy. I remember my first and second ones and how much they hurt, but that pain was nothing compared to my third one. I had a doctor who wasn't gentle and I hope I never have to go through that pain again. I'm now 51 months in remission.
I have had 2 SCT in 2010, on no meds now.
Stay active, don't hesitant to tell nurse about any discomfort you may have.
I did get shingles 7 months after my second transplant.
Be ultra careful in mixed company.
I am still very cautious about germs bacteria and crowds of people. Otherwise life is good.
22 million cells collected over 2 days for me, 7 million left in the bank at HMC in NJ.
Good luck, stay strong, stay busy.
Good luck, Mohr-man!
Go get 'em.
Regards,
Thanks for the timely article. I start my harvest tomorrow, wasn't quite ready today. Bones aching. Hospitalization scheduled for 30 days. My study is through the McGill University Health Centre in Montreal Quebec Canada.
Steve,
Good luck to you. I had two stem cell transplants in 2008 and I'm still kicking around. Keep an optimistic attitude, keep active and you'll be fine until they find a cure.
Larry
Hi Steve,
I just completed my 2nd stem cell last week at Hackensack Medical Center in NJ. They prescribe to the Arkansas theory for tandem transplants. Both were done on an outpatient basis. The first time I was in for 14 days (they start counting days after they give you back the stem cells, so really 15 days). The 2nd stem cell transplant I was out on day 11, close to a record. I almost got out on day 10 but my neutrophil count was a little low. I had 1 foot over the wall.
Anyway, one piece of advice, if they allow you to do you stem cell transplant on an outpatient basis, take it. The procedure is they give you on day 1 the chemo to kill the bone marrow and the 2nd day they give you back the stem cells. The next 10 days or so is simply waiting for the stem cells to make new bone marrow. Outpatient is so much better. Hackensack puts you up in an apartment with an aid. You shuttle back and forth to a treatment center where they give you anything that you need. You are not tied to a hospital bed, in an isolation ward, where you cannot sleep or shower regularly. Call the James and take a look at the inpatient facility and see if they offer outpatient.
By the way, I enjoyed you quote from Pat Riley's father. However, I am more a Yogi Berra man, "When you come to a fork in the road, take it".
Best of luck.
My timeline may be atypical, but I had my stem cell transplant last November. I was able to work from home by mid-December and was back at work in January. I just had my 6 month checkup and everything is clean! I don't have to go back until my 1 year anniversary, when I will receive all of my childhood immunizations. It has been pretty much textbook all the way. I realize that everyone is different but, hopefully, you will have the same experience that I have so far.
I am exactly 1 year post transplant. I got out of the hospital in 21 days. I feel great now. The biggest issue for me was nausea during hospitalization and on and off for about 3 months thereafter. I ate about 10 pop tarts during my 21 days. Lost 40 pounds but quickly gained the 40 back ... and 20 more! I am 54 years old and was in very good physical shape prior to diagnosis during November 2012. Your hair will be gone around day 15 or so. It's very strange, hair wise, the parts of your body that lose hair and those that don't. I am a male.
The bottom line - you get better very slowly but steady. The next day you will feel just a little better than the last day. Its very slow, but steady. It really took a good 6 to 8 months to feel 100%. I was back at my desk job 20 days after I got out of the hospital. Takes about 3 months to get ALL of your hair back.
You will be fine! Best of luck.
Steve,
I cannot tell you how much I appreciate your story. I am just starting my 5th round of Revlimid and dexamethasone. All is going well so far. Your story is of great help to me. All the things you speak about is where I will be in the near future. I just spoke with an individual that went to the hospital where I will be going for a bone marrow transplant. He was very detailed and he really cleared up a lot of false information that I had heard.
The first thing that I told my oncologist at our first office visit was that I refuse to be negative. What else can you do? Sit around and bring yourself down? That's not an option. Since I am several months away from a transplant, I have been riding my mountain bike and doing a lot of long walks. I feel if I can build up my strength and cardio it will help during and after the transplant.
I will be following your story all the way. You are so very kind to share your experience. This will help a lot of us that are going to have a transplant in the future.
ALL THE BEST TO YOU!
And God Bless, George
Dave,
Your wife's success story really inspires me. I like your idea of a new birthday, as does my 18 year old son . His comment: "Kinda cool". I hope her success story is long lasting. Good luck!
Steve
Mark, I am sorry to hear your bone marrow biopsies were so traumatic. I have had three biopsies at The James, administered by three different indviduals, and all three were similar to my last experience. It seems as if a "generous" numbing approach is the way to go!
Steve
Steve-
Good luck to you!
I had a successful auto transplant at the University of Michigan hospital, December 2011. I was only 43 at the time. Luckily, I achieved CR after another course of RVD. I think the only thing that is consistent in everyone's transplant stories is inconsistency. I had a curveball or two (shortness of breath caused by Neupogen), but things went swimmingly after that. Before you know it, my energy was back up to pre-transplant levels. Yes, the hair loss and fatigue was not fun when it happened. In the hospital, the thought of possibly needing a second, tandem, transplant was a bit oppressive. Those 16 days got a little long, toting that IV pole around. It was hard to imagine doing another one. But you know what - I'd do it again in a minute if I thought it was the necessary thing. No hesitation.
From one member of our small group to another, please know that you can do this.
steve
Hi Gil, Thanks for your advice. I am sure that one can never be too cautious following a procedure of this magnitude. I hope that my stem cell harvest is as successful as yours! The last directions I received from my oncologist was to value and listen to the nurses as they are the experts who have done the procedures hundreds of times. I intend to do so!
R - Thanks for your words of encouragement!
Terry - Hope tomorrow is better a better harvest day for you. Good luck!
Steve
Good luck Steve, and I hope all goes well with you! When you mentioned the pulmonary function test, I had to chuckle. When I took that, I told the respiratory technician that being a bagpiper, I should have NO problem with the test. Wrong! It was quite a challenge, but I did pass it. (During a general chat, we determined that we knew someone in common, a fellow piper who was also a respiratory tech!) At least the pre tests to the SCT were a check on my general health, which was also reassuring.
Steve, what a terrific column you have written for us! Out of all the numerous posts from various forums describing the "approach to SCT", yours is by far the best one to read. We truly appreciate getting this type of detail, and we feel you have taken us to the front lines with you.
May you have continued success with your impending transplant, and a smooth recovery to boot.
Vickie, wife of Frank with myeloma
Larry, Alan, Rick and Borntorun - I can only hope that my experience is as successful as what yours were. Not sure that I'm quite ready for the tandem approach yet, but I think at some point we all will do whatever we can to buy time. One thing that jumps out at me from everyone who has had a good response to the transplant is their positive attitude and active approach despite being hospitalized. Thanks for the advice and encouragement!
Good luck with your transplant. I am in the role of caregiver for my husband. He was diagnosed in November, 2012 with stage 3 MM. He had kidney failure and his bone marrow was 95-99% blocked with light chains. His myeloma is very unique, only showing up in his lambda light chains -- no M spike at all!
He started with Cytoxan [cyclophosphamide], Velcade and dex. Velcade gave him severe neuropathy so that was eased up on a little. Light chains went from 1235 to 175 in one month. Went from our small city hospital in Burlington, VT to Dana Farber for a second opinion because my husband has an identical twin. When they determined that his twin was truly identical, a syngeneic transplant was put on the table. My husband had some difficulty achieving CR -- light chains went down to 15, so Dana Farber suggested trying Revlimid. Unfortunately this drug did not work at all, so after two-three cycles, he was then given Pomalyst [pomalidomide, Imnovid], Cytoxan and dex. After one complete cycle his light chains were down to 2.
Stem cell transplant was done on 12-12-13. He was hospitalized for 21 days - most severe effect was kidney failure -- nephrologists were brought in and kidneys did recover. Oncologists were touting this as a possible cure. Unfortunately after only four months, his myeloma has returned and, as the doctors, say "with a vengeance". They myeloma has spread to other organs and is in some of his bones. He is in a lot of pain, but they are trying to deal with it with medications and possible radiation. He has now had Kyprolis [carfilzomib] added to his chemo regimen along with Pomalyst and dex. Praying that he can get into remission.
Doctors are discussing a donor transplant but I don't think my husband wants to do this. We will see what the future brings. Everyday I pray for a cure for this disease, but it is refreshing to hear all the positive stories on this site. You will do fine with your transplant. It is very tiring but improvement is daily - GOOD LUCK!!
My daughter had a stem cell transplant in August 2012. She spent 17 days in the hospital. Only about 5 days were bad with nausea & fatigue. Boredom was a problem. She is doing well now. In complete remission & on Revlimid maintenance. Zometa once a month for bones. The first 100 days they really didn't want her around too many people, but after that she went back to work. When she was diagnosed they talked about tandem transplants but she did so well with induction & the first transplant they saved the rest of her harvested cells. Good luck .
Good Luck Steve! I had my transplant at The James in June or 2012. Great folks there. They will take very good care of you!
Ironically, I will be back in the transplant unit very soon, as my wife will be having the procedure as her lymphoma has returned for the third time. Maybe our paths will cross.
I wish you all the best! Stay strong!
Vicki - Thank you for your kind words and I am glad that you got something from my column. I hope that in some small way I can help others deal with this disease like the other great columnists at the MB have helped me over the last two years. Best wishes to Frank in his battles with MM.
Carolyn - Your husbands battles sure put what I have had to deal with to shame. I guiltily confess to taking my caregivers (my wife) efforts for granted. I believe there will be a special place reserved at the Pearly Gates for MM caregivers and it looks like with all you are dealing with you will get prime seating. The fact that through all of what you are working through you can be positive and encouraging to others speaks volumes to your strength of character.
Terri J - Your description of your experiences very closely matches what my oncologist told me to expect. I worry about boredom and am hoping that at least for the first 5 days I can in some manner work from the hospital. I have always been an avid reader and am hoping to be able to get caught up on reading some works I have put off over the past few years.
Steve
Steve,
Good luck with everything. I was out in 17 days, my wife's goal was 10, but I had not bottomed out by then. They harvested just under 20 million cells the first day. Hopefully the veins are good. For me, day 1 checked in, received central line, outpatients before inpatients remember that. Day 2 ice chips 45 mins before chemo, for 6 1/2 hours. I had 23. Stopped by the BMT unit last month talked to my nurse, new record is 26 to 28 (he couldn't remember). The air is filtered in the room, caused post nasal issues for me. Day 3 rest. Day 4 transplant.
I returned home on June 13th, send a message in via my chart in July wanted to see if I could go back to work, started back first week of August.
So some milestones for you, stay positive, stay moving, buzz for a nurse if you start to feel uneasy.
Good luck Steve. I agree 100% with the emphasis on trying to be active during your transplant. And you cannot drink enough water leading up to the transplant and during.
I had my first tandem stem cell transplant in 2009, and I'm in the middle of my second tandem right now. I'll get my chemo Friday and Monday and my stem cells next Tuesday. But I'd caution you about hurrying to get out too soon. My cells have engrafted pretty quickly on all three previous transplants, but I've had issues with minor infections after engraftment that pulled me into the hospital a couple of times. As much as you want to get out of the hospital, give it time so that you don't have to go back in.
Thank you Steve for sharing about the details leading up to your SCT. Hopefully my smoldering husband and I will not be going down that road this year, but I take comfort knowing that if we do, there are fellow patients and caregivers out there who can give us good advice. We'll be rooting for you and your family every step of the way!
Keep strong and keep fighting!
Tabitha
Terri and Scott - Two more success stories to lift my spirits! Scott, it would be neat to meet someone whose acquaintance started on this wonderful forum.
Jack - Whether it be 17 days or more, if I have the same success that so many have shared in reponding to my column, I'll be happy. Also, thanks for the summary of a typical schedule.
Glenn - Thanks for the advice and especially your words of caution as they are appropriate for me. In other minor medical procedures, my competitiveness sometimes got the best of me as I tend to treat everything as an athletic contest and ended up creating problems that were avoidable.
Tabitha - Welcome to the Myeloma Beacon. I really enjoyed your first article and look forward to reading more.
Steve - Thanks for a great, comprehensive column. I, too, am a caregiver for my husband. His transplant was late January 2014 at Mayo on an outpatient basis. Their program is outpatient based; if necessary, they will move to inpatient status. I agree outpatient days are better than inpatient. He just completed his 100 day check up and is doing well. Opted for quarterly observation, no maintenance chemo, very slight traces of myeloma still in system.
The stem cell transplant experience is, like most of myeloma, unique to each individual. I am including a few things from our experience that may be helpful.
When you get the melphalan, load up with popsicles and eat them continuously to keep your mouth mucus membranes as cold as possible. It will definitely help to lessen the chance of mouth sores. Since you like a challenge, the number to beat in one hour is 19.
Keep an eye on changes in your skin condition around day 7-12. That could be drug allergies or an early warning sign of abnormal response to your stem cells kicking back into gear. If you see them, go in for an immediate check.
Wait to leave until you're sure you are up to it. Relapses can and do happen swiftly. Your body will let you know. Once you leave: rinse and repeat.
Eating can be a real challenge - nausea, mouth sores, or massive fatigue all contribute. Sauces help to slide food down; scandi shakes are better than Boost or its comparables.
Go get 'em! We are all pulling for you and yours.
Good luck Steve ... I had tandem ASCTs. Out in 10 the first one and out in 8 days the second one I prepared my mind and body for both. Consisting of reflection, self thoughts, talking to my husband, family and friends. Exercising the body by walking everyday and strength training. Perhaps I'm just stubborn ... that this "thing" isn't going to beat me.
Good luck Steve - I hope all goes well.
Best of luck! I have a feeling my mom might be in your exact shoes 6-12 months from now at the James! I'll be praying for you!
Good luck, Steve! I'll be thinking about you and hoping things go well for you. As you mentioned, keeping as active as possible is a key factor in SCT recovery. My doctors hammered that point home to me, and I think it helped. Also, one other piece of advice -- don't focus too much on getting out of the hospital as quickly as possible. Much more important is what you're able to do at +30 days, +90 days, etc. If you need to be in the hospital longer in order to get in recovered so that you can do more later, it's worth the tradeoff.
Steve:
You go in soon for your ASCT. Probably won't have a chance to "kibbutz" with you for 120 days or so...So.
Good luck. Be good to yourself. This treatment has both a mental and Physical component. Take your time getting "back" (whatever that will be).
You are ready.
Regards,
Hi Steve,
I am wishing you all the best! I know things will go great for you. I just had my new birthday May 9th. I got out May 23rd, so it was the 16 days that my doctor had told me. I believe I would have gotten out sooner but my catheter got 2 infections in it. A gram+ and gram-. Great nurse noticing I wasn't doing as well had a test run & they found this and pulled the catheter out.
The nurses and doctors at the James are fantastic. My advice: listen to what they say because they know their job. Eat the ice -- I didn't have any mouth sores. Everything went smoothly. I kept asking them what day will I start to fell bad. I used the treadmill and bike a lot. Danny & I walked the hospital and my favorite was going outside for some fresh air.
Don't get me wrong, my strength went down when my WBC dropped to 0.2 & 0.1 and with the infections I didn't walk much, but still tried to do some every day and stay out of bed when I could. I think this was a good choice on my part. I am feeling good I just need to build my strength back up. I had my week check up and am doing great. I don't need to go back till the middle of July.
My doctor originally told me 6 months before any other treatment. When I seen the nurse practitioner last week she said they will start Revlimid next month. They found that this is the best treatment. So I guess next month when I see the doctor I will find out if I go back on it or wait the 6 months. Like I said, it seemed a lot easier than what I thought it would be & I am sure you will do great.
Sherry
Steve thinking of you hope you only needed to do 1 day to harvest your stem cells, like Sherri you'll do fine, like in said if you need anything during your stay look for Joe he knows where everything is at, hope Kyle is assigned to you great nurse, we bonded like in about 2 days super young man, Katlin is one of the other nurses, we looked forward to having her assign to us when Kyle wasn't available, I teased him about that. lol
Also hope you get a chance to have Barb as one of your PCA's great lady !
Stay positive, get up everyday walk outside as much as possible, construction is done in front of the main hospital nice area to just sit and take in the view. Eat, if it's only a cracker eat, we're all in this together so we need to help each person.
I wish you the best with SCT! You have a great attitude and my money says that you do really well! You have gotten a lot of terrific advice from others here who have gone through the process. I was diagnosed in April, currently on RVD [Revlimid, Velcade, dexamethasone], responding well according to my doctor, and the SCT is on the radar, although not scheduled yet. I am encouraged by the comments made and realize how important is is for us to have this forum to discuss things and compare notes. The Beacon has become an invaluable source of information and support ... I check it several times per day.
Please keep us posted on your progress through the SCT process!