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Wednesday, October 24, 2012

Maintenance Cycle 3 Start

Monday was DFCI day, which began the third cycle of my long-term Revlimid maintenance therapy.  My blood test results were generally good, especially as my anemia seems to be getting slightly better.  The results of the 24-hour urine test were also good, as there is still no apparent M-Spike and no monoclonal protein detected.  Yay!  So far, so good.

By the way, having to collect 24 hours of urine every month before my DFCI visit is a bit of a pain.  I have had to do this more than once while traveling (just think about trying to take a liter of urine through an airport security check).  Then I have to carry the bottle into DFCI disguised in a brown paper bag like a wino on a street corner.  Nobody is fooled, however.  I can't wait to get rid of it at the first opportunity when I get my blood draw.  If I want to grab something to eat before my appointment, I have to lug my unpleasant package through the cafeteria.  That's not a lot of fun either.  But I digress.

On the down side, my white blood cell count (WBC) was a low 2.3 and my neutrophil count was a marginal 1.08.  If my neutrophils fall below 1.0, I will have to take a Neupogen injection to build them back up again.  This is a normal side effect of the Revlimid that I take every day.  Even at 10 mg/day, my counts are marginal, so I expect I will have more problems when I go up to 15 mg/day, which is scheduled for next month.  Furthermore, as we enter flu, cold, and pneumonia season, the last thing I want is to have my immune system suppressed so I won't be able to fight this stuff off.  Nurse Mary McKenney confirmed that Dr. Richardson would probably want to try keeping me at 15 mg/day, using Neupogen shots as necessary to keep my nuetrophils up.  I hate that idea!  I have not met with Dr. Richardson for several months now, but I requested that I meet with him next month to discuss how to proceed with this maintenance protocol going forward.

While I was there, I ran across Tom, the MM patient who had his stem cells collected the same time I did, and his partner, Ellen.  I've written about him before (see my May 1, 2012 post) , and we've kept in touch over the intervening months.  He has had a much tougher time than I had.  His ASCT was much more difficult than mine, and he had a stroke, along with numerous infections, blood transfusions, and setbacks along the way.  He is now undergoing radiation to shrink tumors in his sacrum and hip.  He wasn't feeling well from the effects of the radiation, so we didn't spend much time together. It was good to see him, however, and I hope the best for him in his therapy.  I will continue to keep in touch with him.

Today I worked with Linda from WEGO Health Network ( setting up my computer to do video teleconferencing for my upcoming panel discussion.  I have a nice new Logitech webcam that she sent me (even though I probably didn't need it).  It took a lot longer than it should have, but she finally got me set up on Adobe Connect.  The plan is to record the teleconference some time next week (Tuesday or Wednesday).  As I understand it, there may be a panel of three of us discussing some MM topic of interest.  I'm not quite sure what that topic will be yet, but I have made some suggestions, and Linda will send me an email with several choices (hopefully sometime before we go online).  Here are some topics that we might discuss:

1. introduction/Experience with MM
2. Dealing with the mental part of myeloma, living a normal life while dealing with everything that comes with the disease
3. Early vs. Delayed stem cell transplant
4. Pros and cons of long term maintenance therapy
5. level of response effect on prognosis
6. advice for those dealing with MM after first diagnosed

Their editors will polish up the clips and create a conversational video to post on their website.  This should be a lot of fun!

Friday, October 19, 2012


As I have pointed out in my recent posts, I have been thinking about what direction I should take with my blog, now that I have reached what I hope is a stable state of remission for some period of time.  So I was pleasantly surprised to receive a very timely email the other day from Linda, who is a production assistant for an online health website,  This appears to be an enterprise which emphasizes various social media outlets to disseminate information on a variety of health issues.

Linda said they are in the process of building an online video service to provide advice and information on various health topics.  She had come across my blog while researching Multiple Myeloma and thinks that I would be a good addition to their MM channel.  I immediately jumped at the opportunity.  I spoke with her today, and sometime over the next week or so, I plan to  participate in a video panel discussion on one of the MM topics that interest me using a webcam on my computer.  Their editors will polish up the clips to create a conversational style video to be featured on their TV channel.  Here is a link to their TV channel with some videos, one of which addresses MM:

This looks like an interesting opportunity to reach a larger audience with some of the issues that I have been struggling with since my diagnosis.  I don't know how this will turn out, but I am looking forward to participating in this endeavor.  I hope I can make some positive contributions.  I will keep you informed.

One of the topics that has concerned me for some time is the question of using Revlimid for long-term maintenance therapy.  I have already delineated some of the potential drawbacks, including various side effects, secondary cancer risk, and the potential for MM to become immune to it.  Now, it appears that there is another risk.

In today's blog by Pat Killington (see the link on the bottom right of this page), he has been having problems with his Revlimid maintenance therapy.  There is a suspicion (hopefully unfounded) that he may have contracted myelodysplastic syndrome (MDS), in which the stem cells in the bone marrow stop producing healthy blood cells.  Many of these patients also progress to acute myelogenous leukemia (AML).   Both of these diseases are quite commonly acquired by patients with MM.  The disturbing thing is that there is some evidence that Revlimid might be an enabler of contracting MDS.  I certainly hope that this is not the case, especially in Pat's case, but this seems to be just one more thing to worry about.  I plan to do a lot more research on this.  This is another discussion I plan to have with Dr. Richardson.

Monday, October 15, 2012

Keep On Blogging

After my last post, I have received several comments encouraging me to keep updating my blog and keep people informed of my progress.  It's very gratifying for me to hear from people I don't know saying that they find my blog informative and/or interesting.  That gives me renewed energy to keep steady on this course for the time being.

The stories that I hear from other MM patients are very poignant.  Some are too young to have to endure this disease.  Others have been fighting it for years, only to have it rear its ugly head again.  Even those of us who have achieved remission for the time being are just waiting for the Sword of Damocles to fall and the inevitable relapse to occur.  None of us is very far removed from the next blood test which may tell us that the disease is back.  And for those who have relapsed, they are searching for new ways to halt the spread of this pernicious disease.

For those of us who have achieved CR or better after initial chemotherapy and perhaps a stem cell transplant as well, the question of how to proceed with maintenance therapy becomes an issue.  I am participating in a clinical trial in which I am scheduled to receive Revlimid maintenance therapy for the next three years.  Dr. Richardson is a staunch believer in this approach.  However, there are many oncologists and patients who dispute this treatment method.

Revlimid does have some serious potential side effects, one of which is the risk of blood clots, or deep vein thrombosis (DVT), which can result in pulmonary embolisms.   That is why I am taking aspirin daily.  It is also known that Revlimid increases the risk of developing secondary cancers, as if MM isn't bad enough.  One of the biggest concerns, however, is that continued use of Revlimid over a long period may cause one to become refractory, rendering it ineffective once relapse occurs.  What then?  There are also other side effects of Revlimid, such as lowered white blood cell counts, low neutrophils, and low platelets, which increase the risk of infections, especially as flu season commences (I did get my flu shot last week).

I go back into DFCI next Monday for my monthly blood test and Zometa infusion.  After this next month of 10mg/day of Revlimid, Dr. Richardson plans to up the dose to 15 mg.  I have every intention of continuing with this clinical trial of Revlimid maintenance, especially since I have the high-risk t(4;14) chromosome abnormality, which seems to respond to Revlimid.  However, I plan to carefully monitor the dosage amounts.  So far, I seem to be tolerating 10 mg pretty well, but I'm nervous about upping the dose to 15 mg.  Nurse Mary McKenney said that Dr. Richardson likes to keep it at 15 mg even if the white blood cell and neutrophil counts drop by injecting Neupogen to boost them back up.  I don't like that idea.  I'd rather reduce the dose so I don't have to artificially increase my neutrophil count.  I have a feeling that Dr. Richardson and I may be heading for a heart-to-heart talk one of these days soon.   Want to take any bets as to who will win?

Wednesday, October 10, 2012

What's Next?

It's been over a week since I've updated this blog.  One reason is that I spent the last long "guys" weekend up at the family farm in Champlain, New York, on the Canadian border relaxing and playing golf with my son, Jeff, and good buddy, Bobby.  The fall foliage was on full display, and we barbecued steaks, chickens, and veggies on the grill. Afterwards, as night fell, we sat around the roaring fire pit looking at the stars, smoking cigars, sipping wine or beer, and just talking.  (Don't tell Dr. Richardson about the cigars.)  It doesn't get much better than that.  Sadly, we had to close the place up for the winter, so we won't be back until next spring.  Sigh.  These are the times that memories are made of.  When one's time may be limited, one collects and treasures whatever memories one can.

I have been struggling a little bit lately about how to proceed with this blog.  As of now, I seem to have reached a plateau in my response to therapy, and with any luck, I may stay in my current state of IR remission for some time.  If that is the case, I may not have much exciting new news to report on my progress or lack thereof in the near future. (I really hope it stays that way!)

I really enjoy writing this blog.  It is a cathartic outlet for me, and I enjoy telling the stories of my progress and that of others whom I encounter.  I also enjoy delving into the MM research and commenting on what I think are important discoveries or conflicts on how to approach treatment options.  I also know that when I start to get too technical, I turn some people off, so I try to insert some humorous asides to keep my readers from falling asleep.

I also treasure those other MM patients that I have met through this blog, and I am following their situations with hope and concern.  I want to learn from their experiences as well as share my journey with them.  I don't want to lose those connections.

Where to I go from here?  I would like to find a way to keep updating this blog at least once or twice a week, as I have been for many months now.  But my own MM story is getting a little stale at that pace.   I could make it a little bit more research oriented, but I don't want it to get too dry and boring.  Besides, there are other blogs (such as Pat Killingsworth's) and news feeds ( such as the Myeloma Beacon) that keep up with the latest and greatest news reports.  I could opine on what I think are the best options out there, but I'm not a doctor, so what gives me the right to have an opinion?  As a patient, however, I may have a valid opinion on some matters that doctors might not appreciate.

There are some issues that I would like to continue to pursue, such as the effects of long-term maintenance therapy with Revlimid, how to decide if and when to do a stem cell transplant, and how best to deal with high-risk cytogenics, such as my t(4;14) translocation, among others.  One of my strengths is that I have a technical bent, and I think I know how to wade through a lot of the bullshit gobbledegook out there to cull some of the more relevant facts.  However, I don't see how to continue posting on these subjects at the same rate that I have been up until now.

I solicit inputs from you, my readers.  What would you like me to continue writing about?  If you want me to just shut up, let me know that too.  I would like to keep this blog to be informative, helpful, and entertaining.  The last thing I would want is for this to be like a Facebook page (to which I do not belong) describing the minutia of my incredibly boring life.

You may respond online to this blog or email me directly with your suggestion.  In the meantime, I will continue to plod along this same path, hopefully with something interesting or informative to share.


Monday, October 1, 2012

Biopsy Followup

In my penultimate post, I reported on the results of my recent bone marrow biopsy, which included Multiparameter Flow Cytometry (MFC) results.  The MFC test can determine whether there are any measurable MM cells in the bone marrow.  The test is much more accurate than the standard blood serum immunofixation test.  If no MM cells are detected by MFC, it indicates that there is no more than one myeloma plasma cell for every ten thousand normal cells. A negative MFC result is called an Immunophenotypic Response (IR).  Say that fast 6 times.  I know that sounds like a big word, but it has only half as many syllables as supercalifragilisticexpialidocious.

I was pretty excited to find that I have now achieved IR, which is a deeper response level than CR or sCR.  Of course, it's obvious that the better the response level I achieve, the better prognosis I am likely to have.  The question, however, is how much better?

Investigators have been analyzing this question, and there are several important published results.  One particularly relevant 2008 study by Bruno Paiva et al tracked MM patients who had an initial induction therapy using novel agents followed by autologous stem cell transplant (ASCT):  Their conclusion was that "Multiparameter flow cytometric remission is the most relevant prognostic factor for multiple myeloma patients who undergo autologous stem cell transplantation".  

The results were dramatic.  Those that did not achieve IR had a median Progression Free Survival (PFS) of 37 months, while the IR group had a PFS of 71 months!  Furthermore, the median Overall Survival (OS) was 89 months for the non-IR patients, but still had not been reached after 10 years for the those who had achieved IR. (That means that more than half of them were still alive after 10 years.)

All of this sounds very encouraging for me, but there is a fly in the ointment or turd in the punch bowl (take your pick).  This same researcher also published a subsequent paper that analyzed the effect of both IR and high-risk cytogenic abnormalities on Progression Free Survival after stem cell transplants:
 One of the high-risk cytogenic abnormalities included was my t(4;14) translocation.  These results were not so encouraging.  They showed that even for those who achieved IR after transplant, high-risk patients were likely to relapse much sooner than normal-risk patients (2-3 years vs. 6 years).  The recommendations from this study were that high-risk patients should consider consolidation therapy following transplant.

Well, that's just what I did, and I am planning to continue maintenance therapy as well, which I hope will mitigate the high-risk effect of my t(4;14) translocation.  The known fact that Revlimid seems to contain the risk of the t(4;14) abnormality gives me some hope that I might still achieve a prognosis similar to those with a normal risk.  It remains to be seen.

In any case, I have decided to spend less time analyzing this and more time enjoying my life in remission.  (I can already hear the collective sigh of relief from my readers.)  So tomorrow, I'm going to go play golf.  Fore!