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Saturday, March 31, 2012

Penultimate Day

This morning, I awaited my blood test results with particular interest.  My  ANC of 26 from yesterday didn't look very promising.  All morning, I huddled over my laptop looking for the results.  The first result to come around 9:30 was the WBC, which jumped considerably from 0.2 to 1.13.  That was encouraging, but I still needed big improvements in the neutrophis% and the bands% to complete the formula in the last post. It turned into somewhat of an agonizing wait, since the rest of the results were listed as pending for hour after hour.  Finally at about 1:15, I checked the Patient Gateway, and the results were finally posted.  The neutrophils% was 64% and the bands% was 6%.  Plugging those into the magic formula computed an ANC of 791, way above the 500 minimum!  That means I'm going home tomorrow, at least two days early.  I am psyched!

It's interesting that when we first got this room, my nurse, Rebecca, said this has been a lucky room.  The last 3 or 4 patients in this room all went home 2 days earlier than planned!  There must be some kind of Voodoo going on here.  On the other hand, she said that one of the other rooms in this pod has quite the opposite history, and she thinks some kind of exorcism might be needed for that one.  I'm sure glad I got this room instead.

Unfortunately, my hematocrit count, which was hovering up and down near the blood-transfusion threshold of 24, finally decided to come in at exactly 24 today, so I had to get a pint of blood.  Rats.  I was hoping to avoid that, but most transplant patients need at least one transfusion of platelets and blood.

It would be too easy to say that my hemorrhoids are a pain in the ass, so I won't.  Other than that, I'm feeling really good today.  I feel like I have more energy and no other aches or pains.  I'm trying to eat a little more, but most of the food choices still don't appeal to me.  I hope that improves when I get home.  On the bright side, I ordered dinner tonight of a hotdog on a butter-toasted bun with ketchup and relish, fritos, a raisin cookie and a root beer., and I ate it all.  I also downed a yogurt an hour earlier.

My weight has really gone down while I've been here.  The most dramatic example of that came today after my shower, when the nurse went into the bathroom and found my wedding ring on the shower floor!  I already lost my MIT class ring that way, so I had better get this re-sized soon.  In the mean time, I'm wearing it on my middle finger, which is just big enough to hold it.

Tomorrow at this time, I'll be home.  I can't wait!

By the way, I found the penny!

Friday, March 30, 2012

Homeward Bound

The last couple of days have been eventful, and I have been remiss by not keeping up with this blog.  My annoying back itch finally went away, only to be replaced by rather painful hemorrhoids.  I'll spare you the details.  I'm not sure which is worse.  However, with these being the only complaints I have, I know how lucky I mouth sores, no bone pain, no nausea.  I haven't been at all hungry and haven't eaten much, but nobody seems too concerned about that, even though I have lost another 5 pounds.  Their big concern is that I stay hydrated, so I have been trying to drink about 2 liters of liquids a day.

My platelet count has continued to plummet, as you can see by this chart.  By this morning, it had dropped to 13.  Anticipating that it would surely be below 10 by tomorrow, they gave me a platelet transfusion this afternoon.  My hematocrit numbers keep hovering just above the threshold level of 24, so I'm hoping that continues so as to avoid having to have a blood transfusion as well.
The big question now is when can I go home?  I was encouraged when the possibility was mentioned that I might get out this weekend!  It all depends on my numbers, specifically, my Absolute Neutrophil Count (ANC).  This number has to be over 500 for two days in a row before I can go home.  The ANC is computed by a formula related to my WBC:
ANC = WBC(#/ul)*[neutrophils(%) + bands(%)]

My WBC has steadily risen over the past two days, albeit slowly, as the following chart shows:

Using the above formula, my ANC is only 26 today, far short of the target of 500!  It therefore appears unlikely that it will increase to over 500 by tomorrow.  I'm starting to resign myself to probably being here until Monday, but I'll be really upset if it takes any longer than that.  I WANT TO GO HOME!

I have been overwhelmed with the number of visitors I have been getting almost every day.  That has really helped to keep my spirits up and has made the time pass quickly.  Thank you all so much!

By the  way, nobody has found the penny yet!

Wednesday, March 28, 2012

ASCT Day +8

Last night I got a good night's sleep, and I also spent a lot of time this morning napping.  I just felt like being a slug today.

My back itching (probably folliculitis) has finally started to get better. Today I didn't need a pill, and a couple of applications of Benadryl ointment seemed to do the trick.

My counts came back pretty good today.  My WBC stayed steady at 0.07, which might mean the worst is over.  The nurses expect it to start going up again, possibly by tomorrow.  The hematocrit actually went up from 24.9 to 25.4, so I am hopeful that I won't need a blood transfusion.  My platelets dropped from 93 to 57, still well above the threshold of 10 that would necessitate a platelate transfusion.

The attending physician who saw me today said I was doing A+ so far.  That's good news, especially since I still have no mouth sores and I don't feel sick, aside from an occasional bout of nausea, which usually fades quickly.

I've been getting daily shots of Neupogen to help stimulate stem cell growth.  I came across a medical article from the Mayo Clinic which said that the Neupogen didn't help and actually caused more side effects.  Now the Mayo Clinic doesn't use Neupogen on post-transplant patients.  I emailed a copy of the article to Dr. Richardson, asking his views.  His rather succinct response was "suggest you need it and will be coming by to see you."  I guess that settles that.

I am now looking forward to going home.  I am nominally scheduled to go home next Tuesday (Day +14), but I have high hopes of getting out of here as early as Sunday (Day +12).  That will all depend on how quickly my WBC goes up so that my absolute netrophil count (ANC) is high enough.

When Gloria and Bernie were here, they gave me a game called Find It, which is a clear plastic cylinder filled with plastic pellets, within which are hidden about 50 objects.  It's quite addictive to try identifying all the objects by shaking and rolling the cylinder until an object comes into view.  One of the objects is a penny, and whoever finds it gets a bonus for reading the date on the penny.  So far, Jeff, Holly, Gretchen, and I have all been working diligently to find all the objects, but none of us has yet found the penny.

I almost hate to admit this, but while I was dozing off this afternoon, I dreamed that I found the penny.  What a pitiful life I must lead to dream of finding a penny.  Why not the Lottery, for cripes sake?

Tuesday, March 27, 2012

Transplant Update

I'm starting to notice the side effects of the Melphalan a bit more today.  My back is still bothering me, despite several applications of Benadryl ointment.  I took another anti-itching pill this evening, and I think it's starting to work.  Jeff suggested an ice pack, so the nurse brought me one, and that seemed to help.  It feels OK now.

I was also pretty tired today.  I guess that's no surprise, since my WBC count has dropped to 0.07, a 99% decrease from it's value 8 days ago!  Gulp!  I sure hope those new stem cells get to work generating new white blood cells soon.  My platelets have also dropped from a high of 308 to 93, which was expected.

Aside from staving off occasional diarrhea, my only other problem is I'm just not hungry.  I haven't been nauseous, but the thought of food still doesn't excite me.  I tried to eat a buffalo chicken sandwich tonight, but after 2 bites, I shitcanned it.

On the bright side, I still have no mouth sores, and I'm not in any pain.  My left leg was bothering me some yesterday, but I had the pleasure of getting a Reiki treatment last night from our friend, Denise.  It seemed to work, since the pain is gone!  Thanks, Denise!  Also, my hematocrit is hanging in at 24.9, still above the blood transfusion level of 24.  I hope that stays up there.  The doctors and nurses all say that I am doing better than most patients so far.  Let's hope that continues.

I really appreciate the time and effort many of you have taken to come visit me.  I really enjoy the company.  I may be entering a few days of not feeling in top form, but I'm always glad to have visitors.

Monday, March 26, 2012

ASCT Day +6

It has been almost a week since my transplant, and I am still feeling pretty good.  Yesterday, my other OCRM (Old College Roommate), Bernie, and his wife, Gloria, drove up from Connecticut to visit me.  It was very nice to see them.  It was a full visitation day, as Bobby, Gretchen, Holly, and Jeff were also here.  Great!  Holly has brought in some pieces of flair to brighten up my room.

Yesterday, my back was itching badly and even the Benadryl ointment didn't help.  My nurse, Rebecca, got me a pill (I forget the name of it), and that really helped.  I didn't need any more ointment yesterday, and it still feels pretty good today after only one dose.  This morning the redness has faded some, so it seems to be getting better.

I started receiving daily injections of Neupogen yesterday at half the dose I took before my stem cell collection.  This lower dose should cause less bone pain, but I should be OK, since I didn't experience any before.  The Neupogen should stimulate the growth of white blood cells.  Sure enough, my WBC numbers actually went up today!  Here is a graph showing my WBC since last Sunday:

I was told that this uptick is probably temporary, and it will likely go down further before it rebounds permanently.

My hematocrit increased slightly today, so I can hopefully avoid a blood transfusion.  Also, my platelets are finally dropping, down to about half of where they were a few days ago.  This is expected.

I felt a little on the verge of nausea earlier today, so they gave me a new pill, Zydis.  This drug is often used as an anti-psychotic, so I should get a double benefit.  ;-)

So far, I have only faced minor issues since coming to BWH.  Dr. Paba Prada dropped by today, and she thinks I am doing very well.  I'm pretty optimistic that I may get through this hospital stay without any serious difficulties.  So far, so good.

Saturday, March 24, 2012

Medicine Cabinet

While here at BWH, I have been constantly inspired by the breathtaking view from my room.  The labyrinthian array of interconnected ducts, pipes and walkways is a constant source of wonder.  It makes me think of the mining complex on Mars in the movie, "Total Recall".  If one looks closely to the left of the giant chimney, one can espy a small patch of greenery in the distance, proof that I am in fact still on the  planet earth.

In my idle moments, I have time to reflect on all the medications I am taking here.  I'm sure this would be a fascinating topic for you, so let me enlighten you.

My morning starts off with a panoply of pills.  These include:
  • lisinopril - blood pressure
  • amlodipine - blood pressure
  • simvastatin - cholesterol
  • omeprazole - reflux
  • actigall - liver
  • folic acid - anemia
  • levaquin - antibiotic
  • acyclovir - antiviral
  • vitamin B12
  • vitamin D
  • vitamin E
  • multivitamins
  • calcium
Depending on how I feel, I may take either compazine or Ativan to prevent nausea, Imodium for diarrhea, or potassium if my count is low. A few of these pills I also take in the afternoon and evening.  I also take a couple of mouthwashes, as well as powdered glutamine that I mix with water or juice, all of which are to promote mouth health and prevent mouth sores from the melphalan.  So far, I haven't gotten any mouth sores, so I have my fingers crossed that I will escape the worst of that.

Friday, March 23, 2012

ASCT Day +3

I'm still feeling good, although my back has been very itchy, and I am fighting off some diarrhea.  The nurse gave my some Benadryl cream for the former and imodium for the latter, which helps.   I don't have much appetite, but I'm trying to eat whenever I can to keep from losing any more weight.  I expect I won't eat too much over the next week, so I'm trying to store some reserve.
Nancy, the harpist

Earlier today, I suddenly heard harp music in my room.  (No, I didn't think I'd just been transported to the Great Beyond.)  At first I wondered if it were being piped in, but I saw no speakers.  Then a nurse came in and asked me, "Did you know that there is harpist playing outside your door?"  No I didn't.  A few minutes later, Gretchen walked in, and asked me if I had met her new friend.

It turns out that Gretchen met Nancy the harpist yesterday playing in the hospital lobby.  She stopped to talk to her (surprise!) and told her about my stay here.  Nancy then told Gretchen that she would come play for me today, and she did.  It was hauntingly lovely, as I sat at my door enraptured by the dulcet tones of the Irish harp for the next 15 to 20 minutes.  It was truly a memorable gift.  Thank you, Nancy!  Thank you, Gretchen!

By the way, one of the nurses told me that Nancy sometimes plays on this floor, and her favorite piece to play is "Stairway to Heaven", probably not the ideal choice for a cancer ward!

Holly arrived from San Francisco today and will stay until next Friday.  It was so great to see her!  She brought me some delicious Ghirardelli chocolates.  Yum!  Thank you, Holly.  Holly has also decided that my room needs some brightening up, so she plans to add pictures and other symbols of good cheer while she is here.

Wednesday, March 21, 2012

Bad Hair Day

Gretchen and me with Mohawk
Jeff pointed out that it was auspicious for me to get my stem cells on the first day of Spring, the season of rebirth and renewal.  Happy Spring, everyone!  I hope you are all enjoying the wonderful weather that I can't.  Grumble, grumble.

Well, the inevitable finally started to happen.  This morning, I noticed my hair starting to fall out, so I took the plunge and had my nurse, Kristina, shave it off.  Yuck. At first, I told her to give me a Mohawk, just to see how it looked.  As you can see, the result is not very impressive.
 I finally told Kristina to take it all off (my hair that is).  Fortunately, I had Gretchen bring in one of my hats to cover my now-shiny dome.  However, here is how I look completely shorn. My only consolation is that I know it will grow back sometime fairly soon (a few months at most).  Sigh!

Other than that, I'm still doing fine.  I had a slight bout of nausea today, but it went away in a few minutes.  I'm still on anti-nausea drugs, which have been working really well.

They have posted a chart in my room so I can track my numbers daily.  The important ones are my White Blood Cell (WBC) count, my hematocrit, and my platelets.  My WBC is at 2.5 and has already started to plummet, which is expected.  It will go down to almost zero before the stem cells engraft.  My hematocrit is already a little low (28) because of my anemia.  If it drops below 24, I will need to get a blood transfusion.  The platelets will take the longest to drop (about a week I think).  It's now at about 308, and If that number drops below 10, I will need a platelet transfusion.  This is all normal and expected.

Now I just have to wait for my stem cells to take over and rebuild my immune system from scratch, hopefully without any trace of the MM.

Tuesday, March 20, 2012

Stem Cells Infused

Yesterday, I got my second melphalan treatment.  It was a bit scary knowing that the chemo was totally destroying all my body's defenses.  Surprisingly, I still felt fine, probably due to the anti-nausea meds I was given.

Today was a whirlwind of activity.  I had more visits than I can count from nurses, aides, attending physicians, interns, teaching assistants, physical therapists, dentists, nutritionists, and volunteers, to name a few.  I am certainly getting an intensive level of care here.  It's really great, but I have to admit it can get annoying to have a continuing procession of staff visitors hovering over me.  There are times I want to be able to just lock the door.

Apparently I passed the test of not being allergic to sulfa drugs.  Yay!  I was on bactrim for almost 3 days with no visible reaction.  That's good to know.

Today was the big day to get my stem cells back.  They started at around 12:30.  The whole process was somewhat anticlimactic, as it only took about half an hour to inject them into my Hickman port.  They also gave me benadryl, tylenol, and ativan, so I was pretty sleepy all afternoon.  However, I'm feeling fine now, still with no signs of nausea.  Today is the first day of my new life with a new immune system, so Happy Birthday to me!

The stem cells came in two bags, one with 3.2 million/kg and the other with 2.2 million/kg.  So it appears that Dr. Richardson decided to give me more than half of what was collected, leaving about 4.5 million/kg in reserve for a possible future transplant, unlikely as that may be.  I'm comfortable with that.

I'll try to update this blog regularly over the next couple of weeks, depending on how I feel.

Sunday, March 18, 2012

So It Begins

Yesterday I checked into Brigham and Women's Hospital (BWH) to undergo my autologous stem cell transplant (ASCT) process.  The room is spacious, and the staff is efficient and friendly.  Gretchen, Jeff, and Brian all came with me to make sure I got settled in OK. My first night was uneventful.

An interesting side note.  I have been telling everyone that I may be allergic to sulfa drugs.  This is because a few years ago, I was given a sulfa antibiotic to combat what the doctor thought was a urinary tract infection (UTI, for those in the know).  I developed a rash a few days later, so the doctor said it was the sulfa drug.  However, I was never totally convinced of this, because I was later diagnosed with Lyme Disease, which also can cause rashes as well as some of the symptoms attributed to the UTI.  I therefore remain unsure about both the UTI and the sulfa allergy.  In any case, the staff here started me on Bactrim last night as a prophylactic antibiotic.  This morning, the attending physician, Dr. Shipp, asked me whether I was really allergic to sulfa.  I said I wasn't sure, so the decision was made to keep giving me Bactrim (a sulfa drug) and see how I react.  I find it a bit odd that they would go about it this way.  I think it was a pretty rash decision, but so far so good.  It would be good to find out that I can tolerate sulfa drugs, because they are the antibiotic class of choice for many complications I may encounter in the future with my MM.

Today at noon, I was due to receive my first dose of melphalan to kill off my bone marrow.  They started me on fluids to hydrate me around 10:00.  When 12:00 came and went and the Governor didn't call with a pardon, they began the infusion.  It took about a half hour.  I chewed on ice chips and popsicles before, during and after the infusion to minimize the chance of developing painful mouth sores from the chemo.

So far, I still feel fine.  However, the effects of the melphalan should kick within 24 to 48 hours, so the moment of truth is nearly at hand.  Here is a list of possible melphalan side effects from Wikipedia:

Common side effects include:
Less common side effects include:
I don't particularly care for the last two on this list.

Anyway, tomorrow, I get my second and last infusion of melphalan.  Then on Tuesday, I will get half of my collected stem cells re-infused.  After that, the rest of the time here will be spent recovering.

Friday, March 16, 2012

Successful Harvest!

I called DFCI this morning to find out the results of yesterday's stem cell harvest, and  Kathy (covering for Muriel) told me that they collected 1.2 million yesterday, bringing my total to 9.87 million!  She said that this should be enough to use half of them for my pending transplant, saving the rest for a possible future transplant.  Good news!  I decided to verify this by emailing Dr. Richardson.  He agreed that there were enough and he would be happy to store half if I prefer.  I responded that I do prefer that, and he agreed.

After telling him that, I thought I really should look into this further.  I did a little research and found an article addressing how many stem cells are needed for transplant:  Here is the relevant quote:

"In order to proceed with a Stem Cell transplant enough stem cells must be collected. The collection is measured in millions of stem cells per kilogram of the patients weight. It is always quoted that way and never as the total number of stem cells collected. This is because patient size makes a huge difference in the total number needed. In general the requirements are:
  • Minimum required to perform a transplant: 2 million per kilogram
  • Optimum preferred: 5 million per kilogram
  • Bonus collection: 10 million per kilogram
Research shows while 2 million is sufficient, the patient will recover faster, and with a lower probability of grade 3 or 4 neutropenia if 5 million are collected. Research also shows that collecting 10 million does not really offer any recovery benefit over 5 million, but from the patients point of view, it does give an enormous psychological boost.  There has been some recent evidence however that shows collecting more than 5 million may reduce the risk of later infections."

Based on this, I am very comfortable with using half of the stem cells now, keeping the rest in reserve just in case.  There doesn't seem to be any convincing evidence that using them all now would provide enough benefit to outweigh the advantage of having a backup for the future.

Reflecting on the events of the last few days, I can't help but be thankful again for my continued good fortune.  The stem cell collection was successful (even though it took three days), and I have been assigned to the most advantageous arm of the transplant clinical trial.  On the eve of my going into the hospital for the transplant, I couldn't have asked for things to have turned out better.

I am so grateful for the caring and support I have received from so many of you.  On Monday, our good friend, Janice, who is a Reiki master, treated me to a wonderful Reiki session.  It was my first time, and it felt great!  Thank you, Janice.  I can't help but think that one reason things have turned out so well for me so far and that I have maintained such good spirits and upbeat attitude is all of the positive energy I have been receiving from so many caring people, whether it has been in the form of prayer,  Reiki, or heart-felt good wishes.  It all seems to add up to good vibrations.

I will try to keep up with this blog while going through this process, although I might not feel like it much of the time.


Thursday, March 15, 2012

Day 3!

It's feast or famine on this blog.  I went all last week without a post, and here is the third one in three days.  Well guess what?  Believe it or not, I'm back at DFCI for a third day of stem cell harvesting.  Rats!  It's a long story, so bear with me here.

I didn't get a call from Muriel last night because she couldn't get through to my cell phone (I have to call ATT about's happened before) and I also gave her the wrong number for Gretchen's cell.  If she called the house phone, we may not have heard it if it was late and we were in bed. 

So this morning, she called and asked why I wasn't at DFCI!  I took some umbrage at that, and asked why should I be?  She explained that they only collected 2.2 million stem cells yesterday, bringing my total to 8.6 million, still short of the target.  My CD-34 blood test count (measure of available stem cells) was really low yesterday, so they had assumed they wouldn't collect enough.  Furthermore, she thought I had been told by the nurse yesterday that I would have come in today.  I told her that nobody told me that.  Oh well...breakdown in communications.   At that point, I told Muriel that I didn't really feel like coming in again, and that 8.6 million stem cells seemed like a lot to me.  I said I was going to call Dr. Richardson before going anywhere.  (In my frustration, my Irish temper was starting to show.)  She asked me if I wanted her to call him and I said, "No, I want to talk to him myself."

I then paged Dr. Richardson.  When he called me back, he had been forewarned by Muriel.  I give the guy a lot of credit.  Not only is he a great doctor, but he has great people skills.  He started the conversation by saying, "I know why you called, Bill, but first, I have great news!"  He then told me that the selection has been made for the random arms of the stem cell transplant clinical trial, and that I have been selected to have a single transplant, followed by RVD consolidation therapy and then Revlimid maintenance therapy.  He said that he thinks this is absolutely the best of the three arms of the trial.  That is good news indeed!  That is exactly what I was hoping for. 

Now I ask you - how pissed off could I be after hearing good news like that?  We then talked about the shortfall in stem cell collection.  In his view, 8.6 million are not enough stem cells for two transplants. He likes to do a minimum of 5 million for a single transplant!   He told me that based on my age, the chances are that I will only be able to get one, so I have the option of stopping the collection now.  In that case, he would re-infuse all of my 8.6 million cells next week.  If I did choose to come back in and get the count above ten million, he would then give me half of them next week and save the rest for a possible future transplant.  My choice.  Well, when he put it that way, the decision was a no brainer, so here I am, hooked up to the apheresis machine once again.  I am still marveling at the way Dr. Richardson was able to get me back in here and have me actually feeling good about it.

Today may not get me there though.  The CD-34 count is a rough indicator of the expected number of cells they may be able to collect on that day.  On Tuesday, my CD-34 count was 64, and they collected 6.4 million.  Yesterday, it was 21, and they collected 2.2 million.  Today, the CD-34 count is only 9!  I need 1.4 million more cells collected.  This could be close!  I have been informed that today is my last day here, regardless of how many stem cells they collect.  Since my CD-34 count is dropping so fast, they might not be able get enough tomorrow anyway if they don't get enough today.  So this is it.  They will go with what they get.

Wednesday, March 14, 2012

Harvest Day 2

Yup, I was back at DFCI today for Day 2 of stem cell collection.  Yesterday, they collected 6.4 million stem cells, which is already enough for 3 transplants, but I guess they're greedy and want the full 10 million.  So be it.  The guy next to me, Tom, was also here yesterday, but they only collected 4.2 million stem cells from him, so I guess my Neupogen shots must have worked after all.

Usually when I check in, I just use my DFCI ID card, but here they also ask for a picture ID.  I was a bit puzzled by this, but I guess they want to make damn sure that they are collecting stem cells from the same patient they are going to give them back to.  Otherwise, it could be pretty ugly.  On second thought, how could anyone let that happen?

Here is a picture of the apheresis machine that was circulating my blood and collecting my stem cells.  It is quite an engineering marvel, consisting of electronics, pumps, centrifuges, and lots of plumbing.  My stem cells that were being collected are in the bag in the upper right.

Today they got started earlier, because they didn't have to wait for all the blood tests to come back.  I managed to leave DFCI by 2:00, thereby beating the rush hour traffic home.

I found out that I needed to get the full 10 million stem cells collected today, or Dr. Richardson would make me come back again tomorrow!  That sure would suck.  My blood test numbers were lower today, meaning that they wouldn't be able to collect as many as they did yesterday.  I have been on pins and needles since I got home waiting for the phone call as to whether I met the target.  It's almost 9:00 now and I haven't heard anything, so I assume I'm safe.  If not, I'll update this post to let you know.  Maybe I'll just turn off all my phones and go to bed.

Here is a brief summary of my clinical history to date.  After being diagnosed with ISS Stage 1 MM at DFCI, I embarked on a clinical trial with MLN9708 to replace the VRD regimen.   I received the MTD dose of 5.8 mg based on my BSA.  Despite my high-risk t(4;14) status from FISH, I quickly achieved VGPR and then CR based on SPEP results without any PN side effects.  I am about to receive an ASCT at BWH, hopefully avoiding TRM.  Absence of MRD in followup tests  would mean a good prognosis for extended PFS and OS.

If you understood anything from the previous paragraph, you obviously have been spending far too much time reading my blog.  Sorry for the TLAs, but I couldn't help myself.  ;-)

Tuesday, March 13, 2012

Stem Cell Harvest

Sorry for not blogging for the past week.  I don't have a good excuse, because despite all prognostications to the contrary, I have been feeling great!  Not only did I escape the nausea, but I also avoided any other bad effects from the Cytoxan.  I heard from several nurses than patients' reactions vary considerably, with some even having to be hospitalized!  As an additional plus, I experienced none of the bone pain I was supposed to get from the Neupogen injections.  None!  It almost made me wonder whether we were injecting it into the right place.  I am grateful for each extra day that I feel good, especially knowing that they are about to end for a while.

Yesterday, we had to go into BWH to have a Hickman catheter installed.  This line runs directly through the superior vena cava to the right atrium of my heart and exits from my upper chest.  I was a little nervous about procedure ahead of time, but it was actually quite smooth.  I had some general anesthetic, but was awake the whole time.  They used lidocane to numb the incision areas.  the whole procedure took a couple of hours.  I will have this catheter with me from now until just before leaving the hospital after the ASCT.  Now that I have the Hickman, I won't need any more needle sticks to install an IV port.  Having the catheter is also handy for stem cell collection.

Speaking of that, today was stem cell collection day.  Jeff was kind enough to come in to DFCI to keep me company, giving Gretchen a much-needed break.  It was a long day (7:00 to 4:00), but the time passed quickly, with Jeff and I doing nerdy stuff working on developing some computer programs for automating the scheduling of golf tournaments (like our recent outing in OIB, NC).  I told Gretchen that it was too bad she wasn't there, as our technical discussions would have kept her on the edge of her seat.

I was hooked up to the apheresis apparatus for about five and a half hours.  They actually processed four volumes of blood from my body (13.4 liters), which was cycled back after extracting the stem cells.  For some reason, Dr. Richardson wants to collect ten million stem cells from me, which is the maximum amount they try to collect.  The clinical trial I have enrolled in only requires 4 million stem cells, which is enough for 2 transplants.  Unfortunately, it looks like I will have to go back again tomorrow to complete the process. They wouldn't know if they had enough collected today until later this evening, so Muriel said to plan to be there again at 7:00 tomorrow morning unless she called me by late tonight to tell me to stay home.  Well, it's late, and she hasn't called, so guess where I'll be tomorrow.

Tuesday, March 6, 2012

Molecular Tests for MM

Since coming back from DFCI on Friday with a boat load of medicines, I spent the weekend mostly sleeping.  I couldn't figure out why I was so tired, but I thought perhaps the Ativan pills might be the culprit.  I started skipping some doses and found I had more energy, without experiencing any nausea.  I have been fortunate that I haven't been nauseous at all since getting the Cytoxan on Friday.  Today I am feeling more energetic.  I thought I was supposed to start feeling crappy this week from the Cytoxan, but so far I'm feeling pretty good.  I'll keep my fingers crossed.

Starting on Sunday, Gretchen has been doing her Florence Nightingale routine by stabbing, I mean injecting my stomach with two doses of Neupogen to stimulate stem cell growth.  She's really good at it, so it's no big deal.  We have to continue this every day until I go in for my stem cell harvest on March 13.

I am now onto a new research project.  Now that I have achieved a Complete Response (CR) to my treatment protocol (for which I am very grateful), I am curious about how to further classify my response in order to better understand my prospects for a long-term remission.  Since the blood and urine tests now show no evidence of the MM, the next level of testing is to look at the molecular level.
Increasingly sensitive analytic techniques are now available to define more stringent degrees of CR or elimination of minimal residual disease (MRD), including multiparameter flow cytometry and polymerase chain reaction (PCR).  Demonstrating eradication of MRD by these techniques has already been shown to predict for improved outcomes.

I asked Dr. Richardson last Friday about the PCR approach, and he said they don't use that method at DFCI, but rather rely on flow cytometry.  Flow cytometry is accurate to one part in ten thousand (one-hundredth of one percent), so that even very low levels of residual MM cells can be detected this way. This technique is particularly useful in prognosis after stem cell transplants.  Patients without MRD three months after the SCT have a much better long-term prognosis than those where MRD is detectable.

Without trying to get too technical about flow cytometry, the bone marrow biopsy aspirate samples are treated with several types of antigen molecules, denoted by their cell differential (CD) designations.  For MM, the cell-marker molecules CD19, CD38, CD45, CD56, and CD138 are often used.  These molecules will either adhere to healthy cells (positive) and not adhere to MM plasma cells (negative) or vice versa.  The treated bone marrow aspirate is then passed through the flow cytometer, which illuminates the flow with a laser, and the light-scattering characteristics are measured.  The resulting scatter diagrams can determine if there is any MRD.  MM cells will test positive for CD38 and CD56 and negative for CD19 and CD138.

I know that this analysis is useful for prognosis after ASCT, but I'm curious about what it might mean for me now.  My recent bone marrow biopsy pathology report had the following comments:  "Flow cytometric analysis of this bone marrow aspirate reveals a small population of plasma cells (positive for CD38 and CD56; negative for CD138 and CD19) that shows cytoplasmic kappa light chain excess."  The report concludes with the note: "Definitive features of involvement by a plasma cell neoplasm are not seen in the biopsy specimen, while the flow and aspirate findings raise the possibility of minimal persistent involvement."

OK, so I guess I may still have a little trace of MM left in my system.  My question is whether or not these trace cells will contaminate my stem cell collection, which might affect the efficacy of my ASCT.  I don't know why I'm asking you. I should be asking this of Dr. Richardson, but he's not here right now.  Anyway, it's probably useless to speculate.

By the way, I'm still not nauseous, although I suspect most of you are after having read the foregoing.

Friday, March 2, 2012

Cytoxan Day at DFCI

Today is a long, boring day at DFCI, so I decided to kill time by updating this blog  We were up at 5:00 to be here for our first appointment at 7:00 for a blood draw.  The rest of the day has been devoted to the long drawn-out process of infusing the Cytoxan, along with other ancillary drugs.  If we're lucky, we should get out by 5:00, just at the peak of the rush hour going home.

We also met with Drs. Richardson and Paba-Prada.  They are both very happy with my progress, and I have achieved at least CR and possibly sCR, depending on the flow cytometry results from my bone marrow biopsy, which aren't back yet.  I got the pathology reports from my most recent tests, and it's all good.  The bone marrow biopsy showed minimal plasma levels (1% or less).  The bone chip biopsy showed no evidence of the MM, and the marrow biopsy conclusion was that there is only a "possibility of minimal persistent involvement".   The urine immunofixation result was "No monoclonal protein detected", an improvement over the past couple of months, which was "Can't rule out small monoclonal protein".  Hurray!  The bone scan X-rays showed no change from my first scan last July, which is good.  I really couldn't have asked for a better set of results!  Dr. Richardson confirmed that this is the best possible situation to be in going into the stem cell transplant.

The reason for the long stay today is that they are giving me three separate infusions of Mesna, at three hour intervals, to prevent bladder inflammation (called hemmorrhagic cystitis) from the Cytoxan.  In addition, I got an IV dose of Benadryl to prevent sinus congestion, along with oral doses of Adivan, Zofran, and Emend, all to control nausea.  It must be working, 'cause I ain't nauseous yet.  Oh yes, and they also threw in an IV dose of the bisphosphonate Zometa while I am here.  I'm glad I'm writing this all down, because it's getting hard to remember what drugs I am taking when.

There seems to be a consensus among the staff that I will probably feel OK for the next day or so, and then I might not feel too well for the rest of the week. Heather said that the side effects of the Cytoxan are worse than those for the melphalan, which I will get in the hospital.  We'll see.  I also got a prescription for Oxycodone for the anticipated bone pain from the Neupogen injections.  I hope I don't need that. 

Thursday, March 1, 2012

Hat Update

In my first hat blog, I think I gave short shrift to my Russian Ushanka hat.  Now that we are getting our first real snow storm of the winter, I think it is appropriate to display this splendid head covering in its true element.

By the time this kind of weather comes around again, I should have my hair back.  However, if I manage to get over the Patriots' Super Bowl loss, perhaps I can wear this at one of the frigid games at Foxboro Stadium next December or (hopefully) January.

I seem to have opened Pandora's Box with my hat blog.  One of my old long-time friends, Gloria, who is married to one of my college roommates, Bernie, just sent me a hand-knitted hat.  Here is a picture of me sporting my newest addition.  Bernie also included another hat which, to be kind, would best be saved for Halloween.  Thanks Bern and Glor!

I now have enough hats that even if I wear a different one every day, my hair probably will have grown back before I get through them all.  I think I'm all set with this hat business.

Well the time is now at hand.  Tomorrow, I go in to start my stem cell mobilization treatment, which is done on an outpatient basis.  I will get an IV infusion of the chemotherapy drug, Cytoxan (cyclophosphomide).  This chemo has the dual purpose of killing residual myeloma cells as well as stimulating stem cell growth.  On Saturday I begin a 10-day cycle of the oral antibiotic, Levaquin.  Then on Sunday, I begin nine daily injections of Neupogen, which is a (very expensive!) granulocyte-colony stimulating factor (G-CSF).  The Neupogen will cause my bone marrow to over-produce stem cells to help force them into the blood stream so they can be collected.  Gretchen or I will be giving these injections into my stomach at home (belly shots?).  I hope we learn how to do these injections tomorrow.  I have to admit I'm a little nervous about all of this.

I've been told that I probably won't feel too perky next week after the Cytoxan.  I'm thinking of getting my hair cut short in preparation for shaving it off in the next couple of weeks.  So the fun begins!