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Wednesday, October 26, 2011

Cycle 4 Day 1

Yesterday was our day to meet with the medical team.  Over the weekend, the problem with my left foot had gotten worse, so I called Dr. Paba-Prada on Monday.  She said the symptoms sounded like gout, but suggested I see my primary care physician.  So I did that on Monday, and the Dr. covering for him said that it looked to her like gout.  I was quite relieved that it wasn't related to the MM, but it still hurt.  Monday night was no better, so I hobbled painfully into our appointment on Tuesday.  Dr. Paba-Prada and Kathy Colson both thought of gout, but were a bit unsure because of some swelling of my whole foot.  They wanted to see what Dr. Richardson thought.

When Richardson came in, it took him about a minute to make the following conclusions:  it is not gout, but it is cellulitis, a dangerous bacterial infection!  If not treated immediately, cellulitis can lead to such complications as blood poisoning, meningitis, or deep vein thrombosis (DVT), to name a few.  Richardson was particularly concerned about this last one, since I am already subject to the risk of DVT complications from the Revlimid.

The decision was made to interrupt my MM therapy for a week to deal with this issue.  I received an IV antibiotic infusion at DFCI and am now on a prescription of Dicloxacillin for the next 10 days.  I also have to use iodine, antifungal ointment, and foot powder to heal the original cracked skin between my toes, the source of the infection.

In addition to delaying my MM treatment, I had to put off my planned tooth extraction today until the cellulitis has healed.  They gave me a heads up that my Cycle 3 protein results might be affected by this, so I shouldn't expect my M Spike to drop significantly this month.  Darn!  The results should be available later this week or by Monday, so we'll see.

We are really glad we had our appointment with Richardson yesterday and were able to deal with this issue.  Today, the foot is definitely better, so the antibiotic is working.  All in all, this is just a small bump in the road.

Sunday, October 23, 2011

Foot and Mouth Disease

I'll start with the mouth.  Thursday, I had my upper right canine tooth extracted and a new temporary 4-tooth bridge/crown combo inserted.  The tooth was badly decayed, so he had to drill out some bone in order to get to it.  Despite that, the procedure went easier than I expected, and I was out of there in less than two hours.  It seems to be healing well without pain.  I go back next week to start on the other tooth that has to go.  Then I have to wait for both of them to heal before starting on the bisphosphonate.

Now for the foot.  For the last couple of days, I have had a lot of pain in my left foot and big toe.  I'm not quite sure what this is, but I'm hobbling around like a cripple (or crip if I wanted to be politically incorrect, which, of course, I don't).  I'm hoping it's not related to the MM.  I don't recall hitting or banging it recently.  One possibility is that it could be an attack of gout.  I have had some similar pain in my toe on occasion in the past, and it went away by itself after a few days.  We have our monthly appointment with Dr. Richardson on Tuesday, so I might just mention this to him then.  In the mean time, I wanted to finish power washing the roof, but since I can barely walk, perhaps I'll put that off for a while.

I was saddened to read the latest entries in Pat Killingsworth's blog:  Not only has his MM returned a scant 3 months after his stem cell transplant, but he has now just been diagnosed with melanoma as well!  When it rains, it pours.  Fortunately, it's a Stage 0 in situ tumor, which means it won't metastasize if treated soon.  This is the same thing that I had a few years ago, and I'm fine.  Pat is going on a regimen of Velcade/Rev/dex to try to stem the recurring myeloma.  I found that there is a Phase I clinical trial with MLN 9708 for patients with relapsed MM available at his cancer center, but apparently, he doesn't qualify at this time.  Poor guy has had so many decisions to make and a tough road ahead.  I admire his continued grit and humor through all that he has been through.  He is an inspiration to me.

On a more upbeat note, I found a link to a You Tube video on Pat's blog by Dr. Kenneth Anderson, Director of the Lipper Multiple Myeloma Center at DFCI.  Dr. Richardson referred to Anderson as his mentor at the recent patient symposium we attended:

You can understand why I feel I'm in good hands with this crew.

Tuesday, October 18, 2011

Writing Workshop

Today before my last Cycle 3 treatment, I attended a brown-bag lunch writing workshop on creative nonfiction, which is using literary craft in presenting nonfiction to make your material more interesting and more accessible.  There were about seven of us, and what an eclectic bunch!  From a tech writer who is struggling to write a personal journal, to an obituary writer who wants to get more creative, to a film documentary maker who blogs on politics and humanity and can't figure out why all his blogs are always the same length, we're as different as can be.  This is the first in a series of six monthly workshops, where we we will be asked to write for and critique each other.

I found it quite interesting.  I feel as if I learned a few things.  We were each given 5 minutes to write on one of several topics.  Then the leader asked each of us to read our best sentence aloud.  J.J., the documentarist,wrote, "Julian arrived at the locked gate at dusk, a hammer in one hand and a flashlight in the other."  Now there is vivid detail that conjures up quite an image.  I don't know if this is really creative nonfiction.  If so, I want to know what happened with Julian.

Our assignment for next month is to read other major blogs, such as Salon, Huffington Post, Daily Beast, etc. to find a style we would like to emulate, i.e., to find our voice.  We are also to bring 10 copies of something we have written (one page max) to share with the others.  I think I'm going to like this.

Oh yes, I also had a blood draw and some medication today.  the blood work came back fine.  Since this begins the last week of the cycle, I only got the dexamethasone today.  I had my last dose of MLN9708 last week and my last daily dose of Revlimid yesterday.  This week I will recover before beginning Cycle 4 next week.

I'm a little concerned about my vitals today.  My blood pressure has been lower than normal for the last couple of months.  I have been on blood pressure medication for what seems like forever, and I have consistently measured in the high end of normal range, say about 135-140/85-90, for many years.  For the last month or so, I have been at around 124/72, which is a good thing.  However, today I was 98/62!  Holy crap, that's almost comatose.  What's that all about?  I noticed today that if I stand up suddenly or move too quickly, I feel a bit lightheaded for a few seconds.  I mentioned this to my nurse, Heather, and she suggested that I may not be hydrating properly.  I told her that I have been used to hydrating with my favorite malt-based beverage.  Now that I've cut back, I must not be drinking enough healthy stuff.  I need at least 2 liters a day of water, juice, etc. to take up the slack.  There may be another explanation for this, however.  Before going into DFCI today, I spent 2 hours climbing around on the roof of the annex spraying an anti-mildew concoction and then rinsing it off  with a power washer.  I barely had time to change and rush into Boston for my seminar.  Maybe I overdid it just a tad.

Another issue is that I keep losing weight.  I've lost about 6-7 pounds over the last couple of months.  So today when I got home, I decided I had to eat.  I had some delicious leftover mini pork roast that I made for myself over the weekend while Gretchen was checking out potential future home sites in Appalachia following my dental work.  After eating that, I was still a little hungry, so I decided to go out to eat.  Gretchen wasn't hungry, so I went out myself.  I had a choice...emulate the Red Sox pitchers and go for bucket of fried chicken, or dig into a big juicy steak.  After pondering this at length, I chose the latter, so I went to the Grog in Newburyport and had a delicious 12 oz. Sirloin steak with mashed potatoes and spinach.  I can't believe I ate the whole thing.  On the way home, my only regret was that I didn't get a dessert, like a piece of chocolate cake or a creme brulee.  I have a sneaking suspicion that the dex may have had something to do with my suddenly resurgent appetite.

Thursday, October 13, 2011

Dental Woes

I just came back from the dentist, and my fears have been realized.  I'm going to lose my upper right eye tooth (#6).  It was too badly eaten away to be saved by root canal without extensive dental surgery, which I should avoid because of my pending bisphosphonate treatments.  Unfortunately, it served as one of the supports for a 3-tooth bridge, so now I will have to extend to a 4-tooth bridge to span the gap of the (soon to be) missing tooth.  There was a time when I'd have given my eye teeth to get something I really wanted.  I should have.  Now it's going to cost me $6,175 just to get rid of one!  Boy, dental insurance sure would be nice.  I now have a temporary bridge to hold me over until my extraction appointment next week.

This still doesn't deal with my lower right tooth #28, which appears to have developed an abscess since having a root canal done in 2005.  According to my endodontist, the root may have cracked.  The unknown here is whether this is something that needs to be dealt with soon or whether it might stay this way for a long time.  That one supports a bridge as well, including a cantilever that extends toward the back.  If I lose that tooth (including the cantilever), I will have no molars left on that side of my mouth, making chewing a bit difficult.  I can't get a new bridge there, because there is nothing left on that side to support one.  It was previously determined that my jaw bone is too narrow for an implant, and besides, I don't have time for that because of my impending bisphosphonate therapy.  I would probably have to have a removable denture fitted for that space.  I have a decision to make here.  Do I let it go and hope for the best, or have it taken out and move to Appalachia?  Help me here.

All in all, these are small worries in the grand scheme of things.  I just have to deal with them and move on.

Wednesday, October 12, 2011

Dex Effect

OK, here it is, 5:00 am, and I've been awake since 2:00 after my dose of dexamethasone yesterday.  (I'll dispense with the Tarzan yell video this time.)  There's not a lot else to do around here at this hour, so I thought I'd add to my blog.

In my last post, I was complaining about the wait times at DFCI.  However, there is a silver lining to that.  The Dana Farber Blum Patient and Family Resource Center is an excellent place to relax and learn while waiting.  They have a lending library with books, brochures, videos, and CDs, along with several computer stations.  There is a private room which can be reserved for relaxing, meetings, or teleconferencing.  They even have a 1000 piece jigsaw puzzle that you can work on in your spare time.  They also sponsor numerous talks and seminars.  Next week, I will attend a writing workshop there entitled, "Writing Your Story:  From Blog to Memoir", led by Amy Boesky, a professor of literature and creative non fiction at Boston College.  I'm doing this for your sake, my loyal readers.  I hope to find out how to make make my blog more interesting and appealing.  We'll see.  You will all be the final judge of that.

 A great benefit of the computer access is that I can log onto, which is a medical online resource available to clinicians and patients, accessible without a subscription from the DFCI computers.  I am finding this to be a great help in doing research on MM.  Normally, when I Google a medical topic from my home computer, I get a shitload of useless information.  For example, if I make a query about a blood test, half of the articles that come up describe what to do to prepare for the test and what the test will feel like (as if I don't know), without any information about why the test is being given or what the results mean.  It's a real pain to weed through all that crap.  How refreshing it is to use UpToDate to get real clinical information!  This is how I was finally able to satisfy myself yesterday about the M Spike issue I reported on in my last post. (I may not have satisfied you, but I satisfied myself, so I'm going to let it go.)

I mentioned Pat Killingsworth's blog in a previous post (Sept. 25).  He wrote a book on his experience with MM, Living With Multiple Myeloma, which Gretchen ordered.  We both read it and found it quite informative.  The Blum Resource Center doesn't have much literature specific to MM, so I ordered another copy and donated the first one to to their library yesterday.  Hopefully, other MM patients at DFCI may find it to be helpful.

I visited Pat's blog today and I found out his bad news:
After 4 years of remission, Pat underwent an autologous stem cell transplant (ASCT) in July, and he just had his 3-month followup.  Unfortunately, his MM is back already and he has developed more bone lesions.  He now has to go back on consolidation therapy to try to beat it back down.  Bummer!

Over the next couple of months, I will be doing extensive research on my own options for ASCT.  At this point, I am quite leery about jumping into this option too quickly, considering all the associated risks, pain, suffering, expense, and uncertain prognosis, especially at my age.  So far, Dr. Richardson and I seem to be on the same page with this.  I intend to inform myself fully on this issue, so that I may have an intelligent dialogue with Dr. Richardson when the time is ripe.

Tomorrow, I see the dentist to start my major dental work.  When this is all done, people may think I'm from Appalachia with my two remaining teeth.  Actually, being from Western Pennsylvania, I kind of fit the bill, so that won't be so far off the mark.

Now it's almost 7:00 am.  It's starting to get light out, so I have a choice to either start one of my projects or try to go back to sleep.  I'm not sure which one yet, so I'll let you know in a future post. ;-)

Tuesday, October 11, 2011

More on M Spike and IgA levels

Well, we now appear to have an embarrassment of riches, going from no email notifications to sending out three full posts at a time.  I'm still working on this.  My objective is to simply notify the email followers that a new post has been added, so they can go to the blog website to read it.  I'll fiddle with the settings tonight and see how it works out tomorrow.  Stay tuned.

Today was my infusion day at DFCI.  All went well.  The blood test results looked pretty good, although the anemia numbers (RBC, HGB, HCT) got a little worse compared to last week.  I'm getting kind of used to this weekly trip into Boston.  Since my appointments are usually in the afternoon, the trip in is a breeze, but I do have to fight rush hour traffic coming back home.  Most of my time at the clinic is spent just waiting.  First I get a blood draw.  Then I have to wait about two hours for the results to come back.  Then I can take the MLN 9708 drug, along with my Revlimid that I bring from home, and then I have to wait another hour before getting the dexamethasone.  My nurse, Heather, and I both think it's kind of ridiculous for me to just sit there and wait that last hour.  Why can't they just give me the dex up front and trust me to take it on time?  After all, they trust me with the Rev.  Heather and I are conspiring to find a way around this.  Besides, that would help me to miss the Boston rush hour traffic on the way home.

I've done a little more research on interpreting the M Spike from the Serum Protein Electrophoresis Test (SPEP) and the total immunoglobulin type and level from the Serum Immunofixation test.  The SPEP test is a simple screening procedure that identifies the presence of a likely monoclonal protein and gives an approximate estimate of the magnitude of the M Spike.  To validate that the spike is indeed monoclonal, the immunofixation test is then performed using monospecific antibodies.  Immunofixation is more sensitive than SPEP, and also determines the specific heavy chain and light chain components of the monoclonal protein (IgA Kappa in my case).  However, unlike SPEP, immunofixation doesn't estimate the size of the M protein, as it includes the level of polyconal protein as well.

I have argued previously that subtracting the M Spike level from the total immunoglobulin level theoretically should give an estimate of the normal polyclonal immunoglobulin level.  However, both tests are subject to errors of different types, so that this comparison is not done in practice.  Besides, such an estimate of the polyclonal protein level is not particularly useful.  What is important is: Is there an M Spike, and what kind is it?

The bottom line is that once the presence of the monoclonal protein has been established via immunofixation, this test doesn't need to be performed again during treatment unless needed to document a Complete Response (CR) to therapy.  Patients can be followed using only the M Spike level from the SPEP test.  If the M Spike disappears, a negative imunofixation result validates that there is no detectable monoclonal protein.  That, coupled with a bone marrow test showing less than 5% plasma in the marrow, is sufficient to validate a CR.  Of course, this is what I am hoping for from my therapy over the next few cycles.

I think this horse died a while ago and I am continuing to beat it, so I will refrain from boring you any further on this topic.  I can already hear your sighs of relief.

Monday, October 10, 2011

Problem with email notifications

For some reason, people are no longer receiving email updates from Feedburner when I create new posts to my blog.  I'm not sure why this is, but I've been trying to fiddle around with my Google Feedburner settings to correct the problem.  It would help if I had a clue about how to do this.  Most of the stuff on their website is Greek to me.  Anyway, if you bookmark my blogspot website www://, you can check it out and see that I haven't been slacking off and I have been updating the blog at reasonable intervals.

Of course, since the email feed isn't working, you will have no way of knowing about this post, so you won't be able to read this message unless you follow the suggestion above that you can't read about.  Hmmm.  Now there's a conundrum.  If my blundering attempts to fix the email feed problem don't work, I may have to manually email everybody every time I update the blog.  I hope it doesn't come to that.

If anyone has any suggestions on how to fix this, I would appreciate it.

Monday, October 3, 2011

Cycle 2 Test Results

To review, in July, I was diagnosed with Multiple Myeloma based on the following criteria:
  • Monoclonal IgA Kappa level > 3000 mg/dL:   (3180)
  • Bone marrow biopsy plasma cells > 10%:   (62%)
  • International Staging System (ISS) Level 1 (B2-M < 3.5 mg/dL, albumin >= 3.5 mg/dL):  (3.3, 3.5)
Fortunately, I had no organ or tissue impairments (no bone lesions, normal calcium levels, and normal kidney function).  My only symptoms were osteopenia of my lower spine (from MRI) and moderate anemia.  Even  the osteopenia was not deemed severe and was within normal bounds for someone my age.

As you know, after the first infusion cycle in August, the results were excellent, showing about 80% reduction in the M Spike and IgA levels.

Last Tuesday, 9/27/11, I had blood drawn and turned in my 24-hour urine sample to get my protein levels checked after the second infusion cycle.  The lab tests for both the blood serum and urine include Protein Electrophoresis and Immunofixation, which provide a measure of the M Spike and determine the IgA, IgG and IgM immunoglobulin levels.  A serum free light chain test was also performed to determine the Kappa and Lambda light chain levels and ratio.  I have been anxiously awaiting the results all week, and I finally got  the final numbers today.

The bottom line is that things are still going great!  This past month showed another significant decline in the gamma M Spike and IgA levels.  The following table shows how the major results have progressed since August 1.

Test Name Reference Range 8/1/11 8/30/11 9/27/11

Gamma M Spike 0 g/dL 1.96 0.41 0.13
IgA 70-400 mg/dL 3180 659 148
IgG 700-1600 mg/dL 246 248 292
IgM 40-230 mg/dL <5 9 15
Kappa/Lambda ratio 0.26-1.65 578 26.7 4.5
24hr urine total protein <102 mg/24 hr 392 60 38
Albumin 3.7-5.3 g/dL 3.5 3.8 3.7
Beta2-microglobulin <2.7 mg/L 3.3 1.9 1.8
Red Blood Cell Count 4.2-5.6 M/mcL 3.4 3.7 3.9
Hemoglobin 13.2-16.7 g/dL 11 11.3 11.7
Calcium 8.8-10.5 mg/dL 9 8.8 9
Blood Urea Nitrogen 9-25 mg/dL 12 14 13
Creatinine 0.7-1.3 mg/dL 0.9 0.9 0.8 

As you can see, the M spike is down 93% so far, and the IgA level is down 95% into the normal range!  The Kappa/Lambda ratio is down 99% to a nearly normal level.  The urine protein is also down 90% and is well within the normal range.  Also, beta2-microglobulin and albumin are back to normal levels.  All this is good, implying that I have already achieved a Very Good Partial Response (VGPR) according to the criteria I showed in my last post.

I am still anemic, but those numbers (RBC and Hemoglobin) are improving.  The other numbers show that my calcium and kidney functions remain fine.  I am thrilled!  I realize that there is still a ways to go here.  My IgG and IgM numbers are still below normal and the M Spike hasn't gone away yet.  However, these are very encouraging results.  I don't want to get too far ahead of myself here, but I am very hopeful of achieving a Complete Response (CR) after a few more infusion cycles.  That would be totally awesome!  At the risk of repeating myself, I feel like I'm a really lucky guy.

Now I'm going to share something that I wasn't sure I was going to blog about.  However, since this blog is about my journey, I should probably share most of the relevant events that occur along the way, however embarrassing, humiliating, or downright stupid they might be.  Now I'm sure there are a few of those among you who think that I'm a pretty smart guy who has my shit together.  Well, for those of you in that camp, I'm about to disabuse you of that notion.

Last week, the unthinkable happened.  While we were at DFCI for my first infusion on Cycle 3 of the protocol, I had brought my empty vial of Revlimid with me.  (Don't ask me why...Gretchen did, but I had no valid answer.)  Anyway, after picking up my new prescription and taking my first capsule, I decided to finally throw away the old empty vial in the trash bin on our way out.

The next day, Gretchen left for a few days to visit her friend, Marilyn, in New York. I forgot to take my Revlimid at the normal time of 5:00, but I suddenly remembered it as I went to bed about 11:00.  I went to get the prescription out of my valise, and you guessed it...the vial was empty!  I had thrown away the full bottle of Revlimid and brought home my old empty prescription.  I suppose you can imagine my state of mind at that point. In addition to feeling I richly deserved a "Hi, I'm Stupid" stamp on my forehead, I thought about the implications of tossing a $3,300 bottle of pills down the poop chute.  Did I think Blue Cross would be understanding about this?  NOT.  Oh yes, and missing too many doses and maybe getting thrown off the clinical trial, get the picture.  The stupidity, the embarrassment, the humiliation, Oh Shit!

You know, there is an interesting thing about getting diagnosed with an incurable fatal disease.  It changes one's perspective on life.  There was a time when something like this would have devastated me for days.  However, as upset as I was, I figured that, "This too shall pass".  In the grand scheme of things, the money doesn't matter, and somehow, things would work out.  Someday, I would look back on this moment and chuckle...ha ha ha.  It was too late to do anything about it then anyway, so I went back to bed and actually fell right to sleep.  I'm glad Gretchen wasn't home to share the agony of this.  I think she would have been more upset than I was.

The next day, I started working the phones early.  Thank God for Dana Farber and Kathy Colson.  When she heard the news, she went right to work.  By the end of the day, she and her team had a new Revlimid prescription all ready for me to pick up the next morning.  Not only that, but Celgene was going to charge me $300 to replace the prescription (still better than $3300), but Kathy talked them down to $20!  I couldn't believe it!  Have I mentioned before that I think I'm one lucky person?  I didn't deserve to step in shit and come out smelling like a rose, but it happened. 

Now you know that I'm just a normal stumbling idiot, trying to muddle my way through, just like the average schlemiel.  By the way, I don't think I'll ever take an empty bottle of medicine back to Dana Farber, ever again!