ME vs. MM: Two-Year Cancerversary
The end of this month marks my second anniversary since being diagnosed with multiple myeloma. It's also the end of my induction therapy - a two-year clinical trial with Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone, commonly referred to as CRD, for newly diagnosed patients.
What a long, strange trip it's been - one I'll reflect on briefly for those who aren't familiar with it, then I'll pass along a few tidbits I picked up along the way, and finish with what's next.
By far, the first two to three months after being diagnosed have been the toughest of this journey. For that matter, those first two to three months were probably the toughest of my life (much worse than getting through my teen years, which I previously thought was the worst part of my life). Nothing had ever prepared me for being told I had a terminal disease.
Dealing with the emotional, psychological, and physical impact was quite overwhelming, not to mention just trying to figure out what multiple myeloma was and decide on a treatment within a matter of a few days, or at most weeks.
After being less than impressed with the first doctor I met with, I was fortunate to be referred to Dr. Jakubowiak, a leading multiple myeloma researcher, and get accepted into the CRD trial. This turned out to be a godsend for me. It allowed me to forgo a stem cell transplant, which I was not in favor of at all, and opt for a treatment that proved very effective against my cancer with minimal side effects.
I started treatment in March of 2011 and reached a partial response within one month, a very good partial response after two months, and finally a complete response after 10 months. Since then, it's basically been the monotony of traveling back and forth to the University of Michigan every other week for treatment (thank you whoever invented audio books).
Some of the low points from the past two years:
- Never quite feeling well. Seems I'm always either queasy, constipated, or tired.
- Dexamethasone. Every time I take it, it seems to mess me up either physically or mentally. Read my earlier column on Agent D if you'd like to know more about it.
- Intravenous infusions. Early in my treatment, the IVs were tearing up my arms to the point I ended up having a port implanted in my chest for infusions.
- Bone marrow biopsies. I have had three of these over the course of my treatment, and every one of them was painful. Given a choice, I imagine everyone would vote to never have another one.
- A leaky port. During one of my bone marrow biopsies, my port began leaking and completely soaked the front of my shirt and a good portion of the sheet I was laying on.
- Stem cell collection. It took three days to collect a sufficient number of stem cells, after which my wife said she had never seen me so worn out.
- Having a suppressed immune system. Since my diagnosis, I have had numerous colds, several of which resulted in sinus infections that required antibiotics and even delayed treatment at times.
- Driving to Ann Arbor for treatment (approximately 15,000 miles over two years).
Some of the high points from the past two years:
- The wonderful, caring people at the cancer center.
- Feeling well enough to continue working and exercising.
- Being told I could start playing hockey again.
- Reaching a complete response - my wife and I shed several tears of joy hearing this.
- Reevaluating what's important in my life, simplifying my life, appreciating life in general.
- Building a relationship with my father-in-law and his partner (who I stay with overnight when getting treatment in Ann Arbor).
Best pieces of advice I received:
- Do at least one fun activity each week.
- Set aside a short period of time each day for cancer, and leave the rest of the day cancer-free.
The first has been fairly easy to accomplish throughout my treatment period, whereas the second is admittedly easier said than done. There are days when I get treatment or am writing my column that will require more time, but in general I try to limit my cancer time to 15 to 30 minutes a day. When I am able to do so, my psychological state tends to be much better.
Best pieces of advice I might pass along to others:
- Find a good doctor who specializes in multiple myeloma. I believe this is instrumental to getting the best possible care, and I have seen countless comments here and elsewhere echoing the same sentiments.
- Establish and maintain a healthy lifestyle, thereby improving your body's ability to fight this disease. This should be coordinated with your doctor and done within the limits of what you can handle. Some examples of excellent, low-impact exercises are walking, biking, and swimming. Most cancer centers will also provide nutritional recommendations for cancer patients.
- Don't eat your favorite foods after chemo; several are no longer my favorite foods. Also, determine what your "safe" foods are – that is, foods that don't upset your digestive system. Strangely enough, mine have turned out to be peanut butter and jelly sandwiches and breaded boxed shrimp.
- Find activities that help take your mind off having cancer. These activities will end up being very therapeutic for you. Mine have become biking, walks with my wife, and going out to dinner.
So now that I'm finishing my induction therapy, what's next?
The big question I'm facing is whether to continue with some sort of maintenance therapy. My doctor has indicated that most of the patients that have been in the CRD trial have opted for maintenance with a lower dose of Revlimid (no Kyprolis or dexamethasone).
On the plus side, studies have shown that Revlimid maintenance can significantly extend a patient's progression-free survival, and in the case of newly diagnosed patients having undergone treatment with novel agents, it may even improve overall survival.
On the down side, I'm concerned about the long-term toxic effects of all the poison I've already pumped into my body, let alone pumping more in for maintenance. There are also concerns regarding secondary cancers with Revlimid, though that appears to be more of a concern with patients who have undergone a stem cell transplant. I'm also concerned whether long-term use of Revlimid could cause me to build up a Revlimid resistance and limit the options I would have for my next line of treatment should I relapse.
Mostly though, I think I would just like to be drug-free for a while.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Myeloma On The High Plains: Living With Cancer
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
- Living For Lamingtons: Learning About Depression In Unexpected Ways
- Myeloma, Party Of Two: Little Traumas
Great article Kevin, I enjoy Pat K's and your columns, very informative..I'm a smoldering MM patient at the NIH in Bethesda MD. and Mayo clinic in Scottsdale AZ..No treatment yet in 3 yrs. but my IGA numbers are increasing so I'm not sure what this year holds..I appreciate the info.. I agree about not feeling comfortable with your first physician, I had a similar experience..For all MM sufferers use the internet, as I found Ola Landgren of the NCI and Keith Stewart of Mayo, and they had totally different opinions than my first doctor..The two aforementioned doctors are among the best in myeloma field.. I was blessed, so do the research it pays..As the saying goes deal with the head of the horse, as we all know what comes out the other end..
Great article,Kevin!
And congratulations on getting a CR. for what it's worth, my doctor, not a MM specialist, thinks going off revlimid is a good idea , so the body has a chance to be drug free for a while.
BTW, how far do you drive to see your specialist. I'm trying to determine, how far to drive to see a specialist, when the time comes for a second opinion. Here, in northern ca, I only know Stanford but that's 3 hours away. Plus, I don't know if they see patients or if its just the transplant unit....
Best to you and your family, so glad you're in a good place.
Christina
Great points, Kevin. My CRD protocol is different from yours (8 months aggressive CRD, then up to two years low dose Revlimid), so I am going to do the low dose maintenance phase as recommended. I started maintenance on 12/18/12 and I feel normal again without the full CRD. It is also nice to have clean marrow and full blood counts again....just hope it lasts and lasts!
Thanks Kevin, for the really good column about your treatments in the last two years. Hope you continue to do really well! It must be quite difficult to be at a 'cross roads' like this where you are making decisions about your treatments once again. Speaking just solely from my own experience, which of course was different from yours, after 22 months of treatments, I have now been off the chemo drugs for 21 months! wHO knows, I may have to go back onto 'maintenance' again, but have really enjoyed the time away from meds. That's the trouble with myeloma...you can never really say that you won't relapse, or worse. On the other hand, some people do marvellously well and don't seem to need any kind of chemo drugs for years. If only one had a 'crystal ball' to look into!
Kevin
Thanks for the encouraging article. I admire your mental strength to be able to endure the treatments for 2 years. I had about one year of every week treatments. At times it was more mentally taxing than physical. Thanks for the example of endurance.
Ralph,
Sorry to hear you IgA is climbing. Sounds like you're doing the necessary research though. I also agree that the internet can be a great source, you just need to get the point where you can discern between the good info and the useless stuff.
Christina,
I'm currently leaning towards going drug free - I plan to write about my decision a bit more in my column next month. Ann Arbor is 130 miles from my home. It's mostly highway, so I have a two hour drive each way. My treatment spans two days, but as I mention in my column I'm fortunate to have relatives in Ann Arbor so I can stay overnight. Otherwise I'd be driving back and forth twice as much, or paying for a hotel.
terryl1,
Given the schedule for your study, I wouldn't expect the two years on Revlimid to be as big a concern. In my case, I've already been on it for two years, and the maintenance could go on indefinitely.
Nancy,
Even though you weren't on the same treatment as me, postings like yours of people that have remained in remission for sustained periods while drug-free are helping me with my decision. Hope you remain in remission for a long time to come.
Eric,
I found that up until this last cycle, I've just plodded along in what I call "work mode" - it's something that needs to be done, you set a pace, and you just keep going (that's how I get through the larger tasks on my to-do list around the house). Now that I know I'm finishing up this month, I am anxious to get done and the trip and treatment are much more bothersome.
Hey Kevin, great advice and insights. I am 1 year post ASCT and have been on 10mg Revlimid for 6 months. I really enjoyed the 6 months after ASCT when I was on nothing, but all the literature shows that Revlimid, as maintenance, after ASCT doubles PFS and OS, so I insisted that they put me on it. Of course, the fatigue, appetite and bowel issues make me feel bad, but I am opting for the best PFC and OS. Hope I'm right, otherwise the lesser QOL would be for nothing. God Bless and keep your columns coming.
Great column, Kevin! I also just had my two year cancerversary. I had 8 rounds of RVD and have been on maintenance Rev 15 mg. for about 16 months...with complete response. Yes, I'm tired, but the side effects are minimal and I have not had a BMT either and hope not to have one for a long time. That's why I continue the Rev bc I don't want to have a BMT! It's all an individual choice. I love your highs, lows and recommendations....great column for those new to the MM world!
George Jurak said:
"Revlimid, as maintenance, after ASCT doubles PFS and OS"... really? Doubles?
For Christina, University of Ca. Davis has a myeloma program.. It may be closer than Stanford..
Another excellent column, Kevin. Thanks!
George - What you mentioned about Revlimid and maintenance therapy is only partly correct. As Mark pointed out already in the forum, there have been three key trials looking at the impact of Revlimid maintenance therapy on progression free survival and overall survival. The latest results of those trials are summarized in a detailed article here at the MB:
http://www.myelomabeacon.com/news/2012/05/11/revlimid-lenalidomide-maintenance-therapy-studies-clarify-benefits-and-risks/
Here is the article's summary:
"All three trials found that Revlimid maintenance therapy significantly delays the progression of multiple myeloma. In younger newly diagnosed myeloma patients who had undergone a stem cell transplant, for example, Revlimid maintenance therapy nearly doubled the time to relapse."
"Only one of the three trials, however, found that Revlimid maintenance therapy improved the overall survival of patients. In the other two trials, patients who were on Revlimid maintenance therapy typically lived no longer than those who took the placebo."
"In addition, all three trials revealed that the patients taking Revlimid were significantly more likely to experience a second cancer than those who took a placebo."
Thanks Ralph,
Is there someone you recommend. ?..?
I'd appreciate any info..
Someone before, mentioned UCDAVIS as Not a place to go?
Not sure of her reasoning...
Kevin,
If you decide to go "drug free" it will be intersting to see how your CBC and immunoglobulins respond. In theory the RB and WB counts as well as the Immunoglobulins should increase and thus your incidents with sinus infections should drop.
I am not sure how much low level Revlimid (5 or 10 mg) would impact these levels taken by itself.
Ron
Christina, My husband was diagnosed in Dec. of 2010 and went on to have a SCT in May of 2011.Thank God in CR. He is not on maintenance drugs, getting Zometa once a month. We saw a MM specialist at Sutter Sacramento Dr. Michael Carroll. We were very pleased with Dr. Carroll.
Cecilia
@Snip. Go to yahoo and in the search bar type, "Revlimid after ASCT" and then read the articles. Plenty to choose from. Good Luck.
Thanks,Cecilia,
I had my transplant at Sutter, absolutely great people. My hem/onc is across the street at RAS Sacramento clinic for hematology and medical oncology. My doctor was part if Sutter way back, and then they broke off and went to RAS.
So, is dr Carroll an MM specialist or a hem/ onc?
I will check into it, thanks so much... If your husband ever wants to talk , let me know.
@Snip. "All three trials found that Revlimid maintenance therapy significantly delays the progression of multiple myeloma. In younger newly diagnosed myeloma patients who had undergone a stem cell transplant, for example, Revlimid maintenance therapy nearly doubled the time to relapse". Taken from an article from the Myeloma Beacon.
George, Snip,
I'm with Snip on this one. The data I found showed that Revlimid significantly extended the progression free response, but only effected overall survival in one of the three trials, and did not double it. Also, looking at the data a bit closer, the three studies showed they extended PFS around a year and a half, give or take a couple months depending on the study. I think that's a better way of stating it than saying it doubled PFS (2 months vs. 4 months would have also been doubling it, but the extra 2 months wouldn't such a big deal). I wouldn't knock 18 months though, since that is a significant time.
Ricardo,
The three studies you reference are the same data I was referring to. The statement regarding secondary cancers and also just the quality of life staying on Revlimid work into the decision too. I just got back from treatment for this week, and also met with my doctor to discuss this information and a couple other concerns regarding other long term effects of Revlimid. The discussion proved interesting and I will be writing about it more in my column next month.
Ron,
My expectations, and those of my doctor, are that my blood counts will improve. As a side note, my doctor did indicate that my counts have remained surprisingly good and steady throughout my treatment. Evidently this is not the case for most patients in the trial. As I indicated to Ricardo, I do have some more information from my appointment this week regarding the long term impact of low dose Revlimid maintenance and will discuss it in my next column.
My experiences, age and drug regime almost mirror what's covered in this opinion piece.
Added to the depressive cancer diagnosis, I have not been able to work since July 2011.
This has added to the issues faced in the fight here in Australia.
A return to work seems unlikely as the damage done by 'MM in 2010/11 is dramatic.
Off trial in April 2013, I,ll be awaiting what happens next.
Kevin, bone marrow biopsies can be awful or painless. My first doctor was not good, frequently hitting a nerve and leaving a big bandage over a sore spot. My next oncologist gave me a mild sedative and did a skilled job. The best experience was during my stem cell transplant at MDAnderson, where they put me all the way under anesthesia and I woke up not feeling any pain or discomfort at all!
Kevin and Snip, I recommend you watch this presentation :
http://programs.rmei.com/llsmyeloma612vl1/presentation/player.html
Kevin J,
Thank you very much for sharing your experiences with MM. I have a question though and I hope you don't mind my asking. Are you a high risk MM patient? The reason I ask is because my father-in-law has High Risk MM and has for 3 years in March 2013, but he went the Stem Cell Transplant route and is currently in Little Rock, AR at the Myeloma Institute at UAMS, where he received his third and final Stem Cell Transplant, but we just learned that the SCT didn't work and his MM numbers continue to rise, and his platelets continue to drop. They did a "boost" of Stem Cells yesterday, but without the chemo (his body can no longer tolerate the chemo) and if this "boost" does not stimulate the bone marrow, then we are out of options. My father in law was Blessed to receive 18 months of Remission following his first two Stem Cell Transplants at UAMS, so we are so grateful for that time. We will know withing the week, if the "boost" worked or not, so we're all quite anxious and have been praying. I am just curious why you chose to not go the Stem Cell Transplant route and if you were able to forgo the SCT's because you were not considered High Risk, or what your deciding factors were. My father in law was diagnosed in the final stage and is also considered High Risk. Thanks.
Alex,
I was fortunate that the only symptom I showed was anemia, so I have been able to continue working throughout my treatment (though admittedly it's been difficult at times). Sorry you have been affected much worse. Were you also on a CRD trial, or something else? What level of response did you attain and are you on any type of maintenance?
Patrick,
From the posts I've read throughout this site, sedated or anesthetized are the way to go. My first two BMBs were non-sedated and painful. The third was sedated, but that's when my chest port sprung a leak and the sedating drug ended up on the bed sheet.
George,
Interesting presentation, particularly some of the historical data and the information on a variety of different drugs. With respect to Revlimid, most of the information reflects what's being quoted from the studies, and I agree there is a significant (on the order of 17-21 months) improvement in PFS with Revlimid maintenance. Given my current response with CRD, my lack of negative genetic markers, etc. I'd like to think I might have at least 6-10 years PFS in front of me. My dilemma is whether it's worth going on Revlimid maintenance for an addition year and a half vs. the side effects, toxicities, risk of secondary cancer, etc. it may pose.
Lauren,
I am so sorry to hear that your father-in-law is not doing well and your options are running out. With so much positive news being reported in the battle against MM, we all need to remember that there are still a lot of patients out there that are not benefiting significantly from the advancements being made. In my case, I am very low risk. If you were to review the factors that contribute to poorer prognosis, I have none of them. I chose to forgo SCT at this time because I wanted to keep working, I had an active lifestyle that had not yet been impacted to much by the disease, and I saw the SCT as being a debilitating treatment. By fate, luck of the draw, divine intervention, or whatever, I was able to get into the CRD trial, and I could not have asked for more, except perhaps a cure.
There were several postings in this comment thread about Revlimid and cramps. Since that could become an extended discussion in and of itself, they have been moved to a separate forum thread on the topic. Here is a link to the forum discussion:
http://www.myelomabeacon.com/forum/revlimid-and-cramps-t1598.html
Best wishes to everyone for an excellent rest-of-the-weekend!
I agreed to take part in a revlamid trial here in Australia. It concludes soon after 2 years.......I read other people's rev stories and match many of the issues they face....rib cramps, fatigue and bone pain.
Once my trial finishes, it looks like we watch to see when the MM numbers rise and go to plan B.
What that is, I,m not sure yet.
I could work but can't offer my employer any consistency, one day good followed by 3 not so good....I am in the golf industry and am not much fun when feeling crappy or bone pain ties me up.
Insurance will keep me going for a few more months but after that???????
Hey Kevin, Good article and review of your last 2 years. I was also diagnosed at the same time, 2 years ago at the end of this month! I did dex, Velcade and Rev, and reached remission in July of 2012. Only problem is I could only maintain it for a couple of months, even staying on low dose Rev! I relapsed in late fall, and after many imaging tests and consultations and BMB, I will be starting new treatment next week of carfilzomib, dex and then add in cytoxin...probably about 3 cylces to get my numbers back down, then harvest stem cells, and all oncologists I have, including Dr. Bensinger at Seattle Cancer Care Alliance / Fred Hutchinson Cancer Research Center agree I should have an SCT at that time, saying that it is the best option for a lengthy remission or even possible "cure"??? Yes, that was written down? Go figure, not sure of all of that? I had hoped to not have to have one, like last year, but...? One odd thing, both of my BMB in July and November last year show that all of my mutations -- cytogenetics FISH panel etc. -- all of my mutations are GONE! I had del Q13, and it is now gone! No mutations, so I have great expectations for the coming treatment! Have decided I may have more life to live!!! Jan
Hi Kevin,
Very much enjoyed your article...you've aptly described the "roller coaster" that is MM.
I too am just a few days past my official and irrefutable three year "cancerversary". I'm also at the "decision crossroads", having finished RVD induction therapy about two and a half months ago.... currently trying to decide whether to go with low dose Revlimd...or not?
However, I don't know about you but I REALLY don't like questions posed in such a binary, way i.e., "either this choice or that choice, but no others". So, I've rephrased the question of maintenance therapy to, "When do I want to begin therapy with low dose Revlimid?"
Like you, I'm cytogenetically a standard risk and have achieved a CR. So I feel I can "wait and watch" for awhile and choose to begin therapy anytime I'd like down the road. My MM specialist has a tendency to want to go the "wait and watch" route if the markers continue to remain positive (and he spent the last 16 years practicing at UAMS MIRT!) So that's what I'm planning on doing...watching and waiting. I really tend to doubt that waiting 3-6 months ( or even longer if numbers remain good ),and then beginning maintenance therapy will negatively effect PFS to any significant extent.
So my advice...enjoy a 3 or 6 month "drug holiday" and then revisit the issue, if you want to, at those future crossroads. It seems to me that it really doesn't have to be a "now or never" proposition...we've got time yet to decide, me thinks.
Best,
Steve
P.S.- Have you tried taking a couple of Ativan before your BMB? Or maybe a Percocet as well? That seems to take care of it for me ... and I've had 9 BMBs over the last 36 months.
Jan,
Sorry you were unable to remain in remission from RVD, particularly when the data I've come across shows a median PFS of about 6-7 years for it. I hope the carfilzomib and SCT work. It's particularly interesting that your cytogenetics changed, hopefully that bodes well for you.
Steve,
After writing my column, I had my next appointment and my doctor proposed something similar to what you mention – consider 2-3 months on low dose Revlimid maintenance and see how QOL differs from my CRD treatment, then consider 2-3 months with no drugs and see what that's like (or do it in the reverse order), then make a decision for the long haul. More input to consider in making my decision.
Hi Kevin,
I enjoy reading your articles and the discussions from other MM patients, keep them coming. At the end of April it will be 2 years since my allo transplant and I think a family celebration will be in order. I do try and celebrate life everyday - somedays it is easier than others.
All the best,
Libby
LibbyC,
My wife and I have also been considering how to celebrate the end of my treatment and will probably have a small celebration with immediate family. I have a friend that had a tumor the size of a grapefruit that its completely gone after treatment and he held a large "no mo' chemo" party. It was a nice celebration and I thought about something similar, but whereas there's a good change he's cured, I'm only in sCR and am not ready for a large celebration - I'll hold off on that until I'm cured, or at least reach a more significant milestone. Enjoy your celebration.
I am a newly diagnosed reader, I am going through all this information with mild panic. It is difficult to read what appears to be an important sentence that includes indecipherable acronyms. if you want to be informative to us newbies on the road, please spell it all out. That way I can research the terms I don't understand. Thanks, all.
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