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Friday, June 21, 2013

Belated Update

There hasn't been a lot of exciting developments lately, so I have been a bit lax in updating my posts.  I did go to the Farber last week and got some more good news about my continuing remission.  My numbers all looked good.  There was a time when that would be an occasion for celebrating, but things have been dormant for so long that I've almost come to expect it.  I really need to remind myself that every month of normal results is a gift, especially with this disease.  Except for tiring easily, I'm feeling great!  I have minimal side effects from the daily Revlimid dose and monthly Zometa infusion, so I have nothing to complain about.

One piece of good news is that I don't have to provide a 24-hour urine sample every month any more. Whoopeedoo!  The clinical trial protocol that I am on only requests urine samples every 3 to 4 months.  Guess which one of these options I'm going to choose.  I still have to take a few immunization shots to restore my immune system to normal.  Last week I got a Hepatitis shot.  In September, I will get another battery of shots (5 or 6), but after that, I should be OK.  I still have to take the Zometa bisphonate shots every month until next March, but after that, they will reduce it to once every 3 months.  Then, if I am still in remission, I can go off all medications, including Revlimid, by August 2015.  That would be nice.

There was a recent article in the June issue of Clinical Oncology, which I subscribe to, which showed that "Minimal residual disease (MRD) assessed by multiparameter flow cytometry (MFC) is a strong tool for predicting treatment (particularly ASCT) outcomes in patients with multiple myeloma."
  J. Clin. Oncol. 2013 Jun 03;[EPub Ahead of Print], AC Rawstron, JA Child, RM de Tute, FE Davies, WM Gregory, SE Bell, AJ Szubert, N Navarro-Coy, MT Drayson, S Feyler, FM Ross, G Cook, GH Jackson, GJ Morgan, RG Owen. 

That's good news for me, of course, since I had no MRD in my MFC after my ASCT.  However, there have been lots of recent news about good results for newly-diagnosed MM patients who received the new therapies and didn't receive stem cell transplants (ASCT).  Those who achieved Complete Response (CR) or better did just as well by postponing until first remission as those who did an early transplant.  The one issue that concerns me is what about those who are high-risk with adverse cytogenetics like me?  Most of the other clinical results that I read about don't distinguish high-risk versus low-risk results.  However, this article dealt with that issue, "This predictive value was seen in patients achieving conventional CR as well as patients with favorable and adverse cytogenetics."  That was encouragingI would like to see more research on how those of us with adverse cytogenetics respond to various courses of treatment.

In the meantime, I think Dr. Richardson's approach of hitting it as hard as you can up front may be especially helpful for those of us with high-risk MM, where abnormal genetic mutations are likely to occur at a higher rate than those with low-risk disease.  I would like to see more research differentiating between low-risk and high-risk MM.  Anyway, I found this article comforting.

Last year at this time I was recovering from my ASCT.  For the first time in 20 years, I had to drop out of the annual Block Island Race Week sailing regatta.  This year, however, I'm doing great, so we are doing it again!  I leave tomorrow for the week.  Most of the crew are alumni of either The Coast Guard Academy or MIT or both.  Except for my son, Jeff, and another crew member's son, Chris, I am the youngest of the 10-man crew.  The rest are in their late 70's, but they are a skilled and wily bunch, so I think we have a good chance against the other young whippersnappers with whom we will be competing.  We have chartered a 48-foot Swan, Dreamcatcher.  We've chartered it before and it is a great boat.  We will be competing in the non-spinnaker class with about 7 other yachts.  It should be exciting.  For anyone who wants to follow our progress, here is a link to the Storm Trysail website,

While I'm gone for the week, Gretchen will be on her own.  She has now survived 4 months after her surgery without any seizures, thank goodness.  Her neurologist told her not to drive for 6 months, but that has been a huge burden for us both.  Recently, she has started driving on her own for short trips, which I think is fine.  Here's the deal:  her neurologist told her there is a 20% chance of a seizure in the 1st 6 months after a craniotomy, but the probability decreases exponentially after the operation.  I tried to figure out the odds, but it seemed too hard. But Ken, a high school friend of mine, a Penn State graduate, sent me a solution.  Either he is smarter than I am or Penn State has a better math curriculum than MIT, whatever, but he showed me that after 4 months, the probability of a seizure had dropped to about 4%.  (Thanks, Ken.)  At this point, I think the risk of Gretchen's driving are now minimal, so I think it's OK for her to drive herself wherever while I'm gone.  It still would be a good idea for her to stay off main highways for a while, just in case.

Monday, June 10, 2013

More on Lyme

I'm going to apologize in advance to my readers.  My blog has been the subject of numerous spam messages over the past few months.  Up until now, I have chosen to simply ignore them and delete them individually when I get them, but it is starting to be a real pain in the you know what.  I usually get several spam comments a day, so I have decided to add a word verification feature to require matching a word pattern manually in order to post a comment.  This will prevent the automated spam generators from infiltrating my blog site with anonymous comments.  I'm sorry for the additional inconvenience this will cause for you to post a comment, but I really want to stop the spammers from taking advantage of me.   I hope this won't discourage anyone from responding to any of my posts.

My last post on ticks and Lyme Disease triggered more than the usual amount of feedback.  Several comments were from those who went through some of the same symptoms, pains, hurdles, delays, and denials from the medical establishment that I did before they were able to get any meaningful treatment.  I think it is a disgrace and a tragedy that the Infectious Disease Society of America (IDSA) has cowed practitioners into denial on this.  As I see it, a doctor who refuses to take the simple step to either prevent or cure a patient with a tick bite of Lyme Disease by prescribing a simple regimen of antibiotics is in violation of his Hippocratic oath, part of which reads:  "I will prevent disease whenever I can, for prevention is preferable to cure."!  Hippocrates must be turning in his grave.  Come on now!

I also got some input from a couple of people with MM who had previously suffered Lyme Disease and felt that there might be a connection.  Regular readers of my blog will know that I have spent a fair amount of effort trying to find a link between Lyme and MM.  Based on CDC incidence reports of Lyme Disease and MM by region and state over the past decade or so, I tried to build a case that exposure to Lyme increased the chances of contracting MM.  I couldn't find any definitive correlation in the data that I examined, much less a causal effect.  Here is a link to my last post on this subject:  Go West Young Man.  However, I still have my suspicions based on my circumstantial evidence that an unusually high number of the MM patients I have met also had Lyme Disease at some point.  I don't think this case is closed, and I may return to this subject again some time in the future.

Sunday, June 2, 2013

Tick Talk

Okay, I usually only post about once a week or so lately, but I have a bee in my bonnet now, so here goes another one.

There was a very long article in the Sunday Boston Globe today on Lyme Disease.  Here is the link to the article:  Drawing the Line in the Lyme Disease Battle.  I have to say that this really got my dander up!  I am one of the ostracized Lyme Disease sufferers that the medical community has totally disregarded to this day.  I spent an entire summer several years ago suffering numerous debilitating symptoms, such as anemia, joint pains, severe headaches, shooting pains, double vision, fatigue, blotchy rashes, two cases of Bell's Palsy (one on each side of my face), and peripheral neuropathy, just to mention a few.  I spent most of the summer in bed sleeping, wondering what was wrong with me.

After my first case of Bell's Palsy, I had blood tests done for Lyme Disease, but as usually happens, the test came back negative (several parts of the test were positive, but the strict criterion for a positive diagnosis is very high).  These tests are set up by the Infectious Disease Society of America (IDSA) with such a high threshold to prevent false positives that the the probability of a false negative is very high.  Therefore, many people who may actually have Lyme Disease won't get a positive reading on this test.  That was the case with me.

My PCP was a traditionalist, so he looked for everything else that could possibly be wrong except Lyme Disease.  Along the way, I was diagnosed with a urinary tract infection (UTI) which I didn't have.  Soon after I developed a rash all over my body which he said was allergy to the sulfa drug I took for the UTI.  What a joke!  After my stem cell transplant last year, I took a full year of the sulfa drug Bactrim every day.  So much for that diagnosis!  Then I was told I had fibromyalgia rheumatica.  I kept telling him that I thought I had Lyme Disease, but he told me one time to "get my head out of that hole".  I had done a lot of research on this subject, and his dogmatic rejection of the possibility that I might have Lyme Disease was incomprehensible to me.

That's when I wised up.  I searched out a reputable Lyme literate naturopathic doctor in New Hampshire, Dr. Margrit Mikulis.  What a godsend she was!  She immediately diagnosed me with Lyme Disease and prescribed a double dose of doxycycline for about 4 months.  After the first few weeks, I felt much better, and after a couple of months, all my symptoms disappeared.  Thank you so much, Dr. Mikulis!  I don't know where I'd be without you.

What the fuck!  I just don't get this shit.  It's really not that hard.  The ISDA has paralyzed the medical community to prevent diagnosing and treating Lyme Disease in the most cost-effective and efficient way possible.  Here is the real deal.  Any person who goes to a doctor with a tick bite should immediately be given a two week prescription of docycycline, no questions asked!  I mean, come on folks.  Doxycycline is cheap and has minimal side effects.  Teenagers are often given doxycycline for a year or more to control acne, so what's the problem with a two week prescription to either cure or prevent Lyme Disease.  I don't get it!

My daughter's boyfriend, Ryan, grew up in Nantucket, a hot bed of Lyme Disease.  Anyone in Nantucket who goes to a doctor with a tick byte automatically gets a prophylactic dose of doxycycline, no questions asked.  This is how it should be everywhere.  The downside of letting this pernicious disease invade the body and cause all of the symptoms I suffered and many more is terrible.  Why risk it?  If you get it early enough, the cure is simple and painless.  After it gets a hold of you, however, it is a lot tougher to get rid of.

After this episode, my PCP retired (thank you) and I now have a new PCP, Dr. Guidi.  He is much more in tune with reality than my former doc.  After my first bout with Lyme Disease, I got it again.  This time, I had a huge rash which made it easy for him to diagnose (see picture).  He didn't hesitate to give me a two week prescription for doxycycline, and that worked fine.  I recovered problem.

Let's fast forward to two weeks ago.  I was in the shower when I noticed a bump on my inner thigh.  I scraped at it with my finger nail and finally realized it was a nymph tick.  Shit!  I got most of it off, but there was still a little bit left in.  I  called Dr. Guidi and went to see him later that day.  The jaws of the tick were still embedded, so he used tweezers to get them out.  He wanted to know what I wanted to do.  I said I wanted a full two week dose of doxycycline, which he gave me without hesitation.  However, after one week, I had no fever or any other symptoms, so I stopped taking it.  So far, I feel fine.

As a postscript to all of this, my battle with Lyme Disease may have been beneficial after all.  Because I kept going to the doctor for my ailments, I had numerous blood tests.  Along the way, Dr. Guidi noticed than my protein levels seemed abnormally high.  That's when he referred me to a specialist, and that led to my diagnosis with Multiple Myeloma.  Maybe a lot of the symptoms that I had ascribed to Lyme Disease all along may actually have been due to MM.  I will never know.  However, I was fortunate to have been diagnosed with MM before serious damage had a chance to  affect my bones or kidneys.  Perhaps that is why I have been fortunate to have achieved such a good response to the therapy so far.

So what can I say?  Here's to Lyme Disease?  I don't know.  As Gretchen likes to say, "Everything happens for a reason".  Well, I don't know about that, but if it weren't for my travails battling Lyme Disease for a couple of years, I may not have stumbled on the real threat to my life in time.  Who's to say?

Saturday, June 1, 2013

Random Thoughts

Usually I have a theme to address when I update my blog, but today I don't.  I just thought I'd ramble on about what's in my head today.

It has been a beautiful summer-type day--the kind I like.  I have to admit, however, that when the temperature got to 93 degrees, even I thought it was hot.  We haven't put our air conditioners in yet, so we cooled off by fans until evening came along.  But I love this time of year.  The forsythia and lilacs have just passed, but the rhodondendrons and wild roses are in full bloom.  The grass is green, and the lawn looks like a golf course.  That's my pride and joy.  Ever since I fired the landscaper and starting taking care of it myself, it looks awesome!  I love riding around on my John Deere and mowing the lawn.  There is something Zen-like in the experience.  I have no worries or concerns.  I just want to make the lawn look good.

We just planted all the window boxes on the deck, along with other herbs and tomatoes.  It looks great.  I was sitting out on the deck this evening watching the sunset and enjoying the surroundings, when I realized what a gift today has been.  Before MM, I don't think I ever totally realized how wonderful every day on this earth can be.  But today I did.  Life is beautiful.

We have our house up for sale, as we really need to downsize to a smaller place.  We can't consider a condo, though.  What would I do without a lawn and garden to take care of?

Pat Killingsworth has posted a few updates to his website recently that have been very uplifting and inspirational.  He has suggested that if he can survive until 2020, which will be 11 years from his diagnosis, he would like to celebrate, along with other long-term survivors, for a social weekend at an island in the Caribbean.  I think it's a great idea, so I responded to his blog.  After my response, he thought maybe we could move this up to next year.  Here is his response on his blog:  Tropical get together.  I think this would be really fun.  I hope we can make it happen.

 The annual ASCO conference is now ongoing in Chicago.  The most exciting news in anti-cancer therapy these days is the success of immunotherapies using monoclonal antibodies.  There are a lot of exciting developments with a number of cancers, but the Multiple Myeloma community is focused mostly on elotuzumab and daratumumab, both of which have shown great promise in initial clinical trials.  As the conference proceeds, I will update with any important information for us MM patients.