PET Scan Looks Good

Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine.  Last Wednesday’s PET scan showed that all five lesions are significantly decreased, and most are gone.  One isn’t even mentioned.

This is excellent news.  We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn’t guarantee freedom from bone damage.  With these PET results, we can be pretty sure that no damage is occurring.  As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra – looked like about BB size – damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.

So what is this potent regimen?  Please note: I am not a doctor.  This is working for me, but might not for you.  I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab).  At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart.  According to the Darzalex prescribing document, these monthly infusions continue “until disease progression.”

PET Radiology Report

I’m all for that.  Notice, though, the presumption of disease progression,  Myeloma always figures out a way.  So now that the myeloma is stable, the hope is that the period of stability will last a long time.  Happily, neither medication brings serious side effects with it.

With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion.  I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly.  He voiced the scenario that I have feared from the outset – a broken vertebra would most likely put an end to my running lifestyle.  As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further.  DEX is no fun, but 8 is better than 12.

Overall the news is good, and life is great.  Before long we’ll be off to Philly, to run the 100th marathon with myeloma.

All Good News

Friday, August 19, 2016:

Wednesday I brought a Mayo Clinic blood draw “kit” to the local clinic, where they drew the blood and shipped it overnight back to Mayo.  Last evening the results showed up on Mayo’s patient portal, and I’m happy!

Since early April my treatment regimen has been 2 mg of Pomalyst every day, with infusions of Darzalex every week and then every other week, currently with 12 mg of dexamethasone (DEX) on the weeks between Darzalex infusions.  During that time my IgG and M-Spike dropped about 20% per month until a month ago, then leveled off.

Wednesday’s results confirmed that IgG and M-Spike are stable, at least for now.  IgG was 515 mg/dL two months ago, 544 last month, and 506 on Wednesday.  M-Spike followed a similar pattern and was 0.5 g/dL on wednesday.  These numbers are as low as they have ever been since my diagnosis 13 years ago, and just a third of their values of last April.  The chemo regimen is doing a great job for me.

Where to from here?  Could we cut the Pomalyst or the DEX?  It’s nice to think about, but mostly I’m just happy to be stable for now and content to wait another month.  I suppose another PET scan is indicated, to be sure that the lesions in my vertebrae have faded back (as I think they have), but I can wait for that too.  I haven’t heard from Dr WG at Mayo yet – perhaps he will have a different idea.

I also had a heart disease scare in the last marathon, but a recent stress test was normal, actually better than normal, so I think the angina-like symptoms were caused by acid reflux.  Also, because my most recent colonoscopy was ten years in the past, the doc ordered one of those and that too was negative.  I feel thoroughly checked out and ready to run a few more marathons!

Thursday Budget stuff

IMG_0009Before June budget stuff here’s a picture of Donner Lake.IMG_0014And here’s another. It’s very warm here in Northern California with not a lot of change over the next week. Tomorrow and Saturday are even hotter. So we will need to put in our window air conditioners. This will raise our electric bill but it’s too hot not too use them.

Yesterday’s doctor visit was quite good. We decided not to do a maintenance of every 2 weeks for now. Also, I won’t see him for 2 months but will get monthly labs to see what’s going on.  I’m sure this is a gamble but I think if I have the chance to be drug-free for a short while it will be worth it. I still have 3 Velcade shots so not till July. I’m feeling positive about my decision though. My numbers have never increased radically and hopefully this  will stay the same so future relapse will show it self early on.

Onward to the budget. June is still starting out at a deficit so I will need to transfer a little money to cover a few things. But overall our June budget should show that we need $700 less due to a few things.  I’m hoping the numbers even out by B’s first paycheck of the month. Electric has gone down, but we’re on the balance pay program so it’s balanced based on the year so it’s still at $200. But that should drop once it gets recalibrated.

Also, school money won’t be going out and a few other things will drop too. July will even be better when the Harp refi takes effect ( I hope).  this was of course, a tough decision but with the increased % by October under the previous modification we really don’t have a choice. After much thinking and discussion, the way I have come to see this: we don’t want to move, we will never pay off the mortgage in retirement, so we need to look at getting the mortgage to be an amount that is like a ‘rent’. This refi will do that so I’m pleased with that. When one of us goes to the great beyond then that other person can decide to sell or stay. Unfortunately with my diagnosis, I can’t get life insurance, but many years ago B had me get life insurance ( a small amount ) thru his work. But it would be enough to help. One thing I am concerned about and maybe someone knows the answer to this.. Is when B retires from this company would my life insurance policy just stop? Or would we be able to keep it and keep paying on it?? does anyone know the answer to this?

Well, dinner is crockpot Thursday chicken. Since I’m on dex today, that’s a good thing as I don’t feel much like cooking.

Speaking of cooking, I’m reading the new Ruth Reichel’s book,My Kitchen year  it is so great. I’d highly recommend it.  Of course, I don’t think she would consider crockpot chicken, but then again she’s not on dexamethasone.

Yellow Roses

Wednesday, May 25, 2016:

My sweeties and I bought a nice bouquet of yellow roses to celebrate my latest treatment results.  In the last four weeks on Pomalyst (pomalidomide)(POM) and Darzalex (daratumumab)(DARA) my IgG has dropped 20% from 807 to 644 mg/dL, and M-spike 25% from 0.8 to 0.6 g/dL.  These numbers are the lowest that I have seen in my 13 years with myeloma.

Not all of that progress comes in the last four weeks, of course.  Here is a chronology of treatments and results since January, 2016:

  • Wed Feb 17 First Zometa infusion, serious reaction to something, likely the Zometa (not relevant to these results).  Still on two-MAB trial. 
  • Wed Mar 9 Last trial-drug infusion, then next day PET shows myeloma progression, stop trial and start POM immediately, 2 mg daily & 40 mg dexamethasone (DEX) weekly. 
  • Thu Mar 24 Myeloma markers tested after 2 weeks on POM/DEX & trial drug, which has a half life of about four weeks.  Numbers down, see chart. 
  • Tue Apr 05 After 4 weeks on POM/DEX & trial drug, M-spike down but can’t continue trial drug, start DARA next day. 
  • Mon Apr 25 After 3 weeks of POM/DEX & DARA plus fading trial drug, markers down significantly. 
  • Wed May 25 After 7 weeks of POM/DEX & DARA, IgG and M-spike down to all-time lows.

Currently all of the immunoglobulins that we measure, IgG, IgA, and IgM, are below the bottom of their respective reference ranges and lower than I have ever seen any of them.  Implications?  For sure, my immune system is weaker than normal, but I don’t know if it is actually weaker than it was before the POM/DARA regimen began.  I wish that IgA and IgM weren’t so low, but perhaps that is the price to be paid for now, because the myeloma tumor burden has been reduced significantly – has to be.

That’s the very good part.  I try to visualize the inside of my bones, dark red tubes with those little Y-shaped IgG Kappa immunoglobulins floating around hunting for the errant plasma cells and taking them out one by one.  Yee-ha!  Take that.

Somehow the POM plays an important part in this scenario too.  I haven’t figured out how to visualize that, but for now it’s enough to imagine that the POM weakens the cancer cells by reducing their fuel supply, or makes them easier to find, or recruits other parts of the immune system to help,
or whatever it is that POM does so well.

What’s next?  One more weekly infusion of DARA, and then, as long as the regimen continues to work, every two weeks until September, and every four weeks thereafter “until disease progression,” according to the Darzalex prescribing guide.  The worst-case result would be progression of the disease within weeks, and the best result would be a complete response, where immunoglobulin levels actually return to normal and the myeloma cannot be detected except by extraordinary measurement methods.  The most likely result is in between.  Time will tell, and patience is demanded even if patience is in short supply.

Technical thoughts:

For myeloma geeks: Darzalex is a monoclonal antibody which attacks the myeloma cells directly, just as my own antibodies and other immune defenses can attack them, but more effectively.  It is an immunoglobulin of type IgG Kappa, whereas my monoclonal myeloma cells are type IgG Lambda.  How do the measurements of IgG and M-spike distinguish between these two monoclonal antibodies, when I had received an infusion of Darzalex just the day before the test?  In each infusion I receive a 1200-mg dose of monoclonal antibodies.  When that is diluted by about 5 liters (50 dL) of blood (typical for a human body), it comes to 1200/50 = 24 mg/dL, which is a small value compared with the 644 mg/dL of my own (good and bad) IgG.  Check my math please.

However, since the Darzalex has an estimated half life of 18 days and I am getting weekly infusions, my blood contains more than just the most-recent dose, so maybe the correct amount is two or three times as high, perhaps 50 to 75 mg/dL.  That’s a guess – the actual math is well above my pay grade.  Even so, the concentration of treatment antibodies is only about 10% of the reported value of IgG, 644 mg/dL.  Dr WG suggested that the technician who reads the M-spike could separate the myeloma from the treatment, but I don’t know if that works for the quantitative measurement of IgG.  More to learn.

Personal thoughts:

Ms Wood Duck on our patio

Two grandchildren are visiting this weekend.  One is learning about birds, and watched a mother wood duck go into our new wood duck house to lay an egg.  The other is sitting in Grandma’s lap, helping her read books to him, or getting help from Grandpa’s in solving puzzles.  Precious moments all around.  When I was diagnosed the common wisdom was 3 to 5 years and out, but here we are 13 years later enjoying grandchildren who weren’t even born then.  I feel so lucky that novel medicines like Pomalyst and Darzalex have kept me alive to get to know them, and for them to know their grandpa.

JustKeepWalking Update

We are close!!!!   11 more days till we reach the 3-year mark of WALKING INTENTIONALLY EVERY SINGLE DAY!  That’s 1,095 days if my math is correct. Today was quite cool and windy with rain on the way. We walk in the rain and wind and snow(rarely). We are lucky to have a park with a walking trail 1/2 mile from our house. That probably makes a big difference. I think if I had to walk by the side of the road( at least around here with crazy drivers, I wouldn’t have lasted.  Also, for any of you thinking of starting a JKW project a word of advice.  Get up, put on your sweats and PUT ON YOUR WALKING SHOES!  I think that makes a huge difference psychologically. I wear New Balance Country Walkers. Very supportive and I have inserts.  I’m thinking of trying North faces walking /trail shoe but I’m usually reluctant to try something when I have something that’s working so well. Part of the reason I thought of North Face was, 3 years ago I bought my jacket that I wear every day walking. It’s not expensive $99, if I remember. But the zipper broke . I was gong to order a new one and then I thought about North Faces lifetime guarantee. So I e-chatted with the rep and he said send it in. I did and 2 weeks later my jacket was returned with a new zipper. I was very impressed and give a big shout out for North face. They didn’t even need the receipt which I would have long gotten rid of.

Also, just do what you can. With the steroids ,I’m on my muscle never really build ups since steroids reduce muscle mass. But Just think if I wasn’t walking, so I do what I can.

I’m looking forward to finishing the Velcade and going off Dex hopefully sometime in July. Of course, if my numbers are good. And of course, at some point ,I’ll be back on but in the interim it will great.

 

So, Lace up those walking shoes, and Just Keep Walking!!!

country walkers by New Balance

Better DEX Experience

Three weeks ago I whined mightily about taking DEX.  The worst problem was acid reflux the second night after taking it, but there were other issues too.  I’m happy to say that I have had better experiences since then.

Acid reflux:

Lots of good people offered great suggestions regarding the heartburn (acid reflux).  This formula has worked for three weeks in a row.  After the worst heartburn of my life, now zero heartburn:

  • I take the 40 mg of DEX with food at the Sunday evening meal, and the reflux happens (happened) Monday night.
  • No food at all in the last few hours before going to bed Monday night.  I figure two hours may be the minimum, although I have not tried less than three.
  • No beer or other alcohol at all Monday.
  • No chocolate after noon Monday.
  • No coffee after noon Monday.
  • Take a Zantac with dinner Monday night, but no other time.
  • Take calcium citrate 250 mg twice daily every day.  No other calcium works the same.
  • Drink some extra water if there is even a hint of a symptom after dinner Monday night.
Other:
        
The sleeplessness on Monday and Tuesday nights has improved too – I guess my rickety old body is getting accustomed to the DEX once again.  I’m still hyper on Monday and grumpy on Tuesday and Wednesday, but getting better.
     
It’s not like I haven’t taken this stuff before!  My Mayo doc is hoping to get me down to 20 mg and reduce it from there if the new regimen does the trick,  More about the new regimen in the next post.  

Whining About DEX

Dexamethasone (DEX) is a part of many myeloma regimens – my doctor says “everything works better with DEX.”  I’ve taken it before, and not liked it then, but this most recent experience is something new indeed.

Sunday night I took the “usual” 40 mg dose, ten little 4 mg tablets, at bedtime.  In the past this has worked OK for me because the DEX doesn’t interfere with my sleep that first night.  And it didn’t interfere Sunday night, I slept well.  Monday, then, was “DEX day,” full of energy, as if 200% caffeinated all day.  I got a lot done, including an energetic 4-mile walk/run.

Trouble started at bedtime Monday night.  Never in my life have I had such heartburn – was that from the DEX?  I suppose so, I think so.  I slept very little that night, awake because of the DEX and forced to sit up for part of the night to ease the acid reflux.  In the morning my esophagus was still inflamed, warm coffee causing pain when it reached the bottom.

Tuesday became another DEX day, my body once again on full alert.  I tried for a much needed nap, but no dice.  Again I got a lot done, rounding up materials for a wood duck house that we are building for our back yard, and preparing for our upcoming 93rd marathon, but I felt like I was running on empty.  Tuesday night I did finally fall asleep after a couple of restless hours, but awoke again at 4:00 am only to lie there until rising.

Wednesday was strange.  I felt like someone else, I don’t know who.  Not sick, but not OK.  I did finally get an afternoon nap, and Wednesday night I was able to sleep, waking Thursday morning mostly recovered.

I really don’t want to have that experience again, especially the acid reflux, which might actually have caused permanent injury at the bottom of the esophagus.  I know that the doctors believe that the 40 mg dose of DEX is more effective than a lower dose, but I wonder if it is worth the unpleasantness and, indeed, the risk.  I can try to manage the acid reflux by finishing the supper meal at least two hours before bedtime, and skipping my usual one beer and all chocolate.  I will take calcium citrate morning and evening, and perhaps eventually take a prescription remedy if necessary – I don’t have such a prescription yet and don’t know if there really is an effective one.

The current plan is to take the full 40 mg once more this coming Sunday and see how it goes.  Sigh.

In other news I am now taking Pomalyst once again, 2 mg daily.  This can suppress neutrophils, but a CBC on Wednesday showed them at 5.2 k/uL, which is about twice what my neutrophils usually run.  I don’t know why – does DEX help with neutrophils?  A quick Google search suggests that it may indeed help, possibly one of the reasons that “everything works better with DEX.”  Oh well, let’s try one more week.

Adventure In Pain

Lots has happened since my last post, and this is a record of those events.  I have to write it somewhere.  It’s interesting to me, part of the journey, but you’ll be the judge.  It’s mostly whining.

Background for the reader:  Last Wednesday I had an infusion of a study drug and an infusion of Zometa, and also began a week of oral Valtrex in case my back pain might be the prodrome for shingles.  By Friday the pain in my back and abdomen was much more pronounced, continuing into Saturday.  I posted about that here.

Saturday, February 20, 2016:

I have a new respect for people who are obliged to tolerate serious, chronic pain.  It consumes me, clouds my mind, makes focus difficult, and I want to lie down and sleep until it goes away.  But sleep is not always possible either.  I can’t eat, because nothing sounds good and because it would probably come up again anyway.  To other people I must be a total dud, a zombie, no personality at all except as a whiner.

Saturday evening my sweetie took me to the emergency room at a small but very competent local hospital.  Since the pain seemed to be located in the right rear quadrant of my lower abdomen, they did a CT scan there.  They found nothing, sending me home with a prescription for Vicodin (not fillable at that time of Saturday night without a long drive).  Factoid: Vicodin prescriptions can’t be faxed in – you have to bring a paper copy to the pharmacy with the doctor’s actual signature on the actual paper.

Sunday, Feb 21:

I had a bad night with little sleep, but in the morning my right eye was acting strange.  The eyelid drooped, it hurt a little to look to the side, or up, or down, and at first I couldn’t get it to point where the left was pointing.  I was concerned that this might be another symptom of the onset of shingles, this time in the eye, so at 8:00 am we were in Urgent Care.  We saw a very competent NP who basically instructed me to contact the on-call eye doctor and get my butt over there.

I did, and she was wonderful, opening her office for me on Sunday.  After almost an hour and a half of tests she concluded that shingles was a very unlikely cause of my symptoms, though she couldn’t actually diagnose the cause.  If symptoms worsened she wanted me to come in the next day, a normal work day.  If not, then Tuesday to see another eye doctor.

The abdominal pain had not gone away, of course, so she tolerated my mopey zombieness quite well I thought.  That pain made for another miserable day and night, with little sleep of any quality.  Neither naproxen nor acetaminophen helped much, though I didn’t try them together.  I stopped the Valtrex, just in case it was part of the cause.  No help.

Monday, Feb 22:

The right eye seemed a little better in the morning, not normal, but no need for another urgent eye-doc visit.

By 7:00 am I was calling for an appointment with my regular primary doc, who is a good one.  His schedule was full until Thursday, so I got an appointment with a different doc who is an internist but has experience with myeloma patients.  Then I went back to the hospital for an ultrasound of the lower right abdomen.  Like the CT scan Saturday night, the ultrasound found no problems.

The doc was lucky draw!  He quickly sorted out the options, cut through the crap, and diagnosed the pain as (1) A reaction to the Zometa infusion, or (2) Pressure on the spinal cord from the myeloma and associated inflammation.  If he was right the pain wasn’t in the lower abdomen at all, it just felt like it.  Like the ER doctor, he recommended the Vicodin, especially at night.  “You can’t heal if you can’t sleep.”

I went home and thought about inflammation.  What is the most powerful anti-inflammatory I have on hand?  Dexamethasone (DEX) – everyone knows that.  Willing to try almost anything, but not ready for the Vicodin until evening, I took one tiny 4 mg DEX tablet.  That’s not much DEX – in myeloma treatments a normal dose of DEX is ten of those tablets, totaling 40 mg, once per week.  It didn’t help right away, but I went to bed about 2:00 pm and was able to get to sleep.

I awoke three hours later and the pain was gone.  All of it.  That tiny tablet of DEX was MAGIC!  I had a wonderful evening, ate well, had a beer, enjoyed some TV with my sweeties, then slept like a log.  As life should be.

Tuesday, Feb 23:

Fasting blood glucose was 114 and pulse oxygen 98 on waking.  I sometimes measure glucose when on DEX, and this was a different dose.  114 is fine.

The right eye seemed still better, though not best yet.  I saw another ophthalmologist, who concluded that the cause was most likely a temporary loss of blood flow to a nerve bundle that serves the eyelid and the muscles which steer that eye.  The eye itself is fine, not involved.  This happens, he says, and in my case the nerves luckily seem to be recovering, and might actually recover fully.  What caused the loss of blood flow?  He wouldn’t opine, but there sure is lots going on.  I have a followup appointment months from now.

The back and abdominal pains were still gone, and I felt wonderful, full of pep.  We went to the YMCA where I walked three miles at a pretty good pace of about 14 minutes per mile.  This was a very good day!

Toward afternoon the pain began to return in my back.  By bedtime it felt as though a blunt object like a butter knife was pressed hard against my back along the right side of my spine.  Though the abdominal pain did not return, this sharper pain also became a 7 of 10 and made sleep difficult.  I kept trying to find a comfortable position, but position didn’t much matter.  At midnight I took a Vicodin, my first, only to find that it had no perceivable benefit.  At all.  The pain remained.  The bottle says it’s OK to take two, but if one didn’t help at all then I supposed that two would only double the side effects without much benefit.

Therefore, at 2:00 am I gave up on the Vicodin and took another 4 mg tablet of DEX.  Three hours later I felt much better and slept soundly.  Better to treat the inflammation than try to mask the pain, I guess.

Wednesday, Feb 24 (today):

The right eye is better yet.  Waking blood glucose on DEX was 116.

The back pain isn’t entirely gone this time, maybe a 1 or 2 of 10, as it was for a few weeks prior to last Wednesday’s infusions.  Why wasn’t the DEX as magical this time?  Did the inflammation get a little worse in two days, or have my body and the inflammation become accustomed to the DEX?  Anyway I sit down carefully right now, instead of plopping into my chair.

What’s next?

I may be off the study – I don’t know if two little doses of DEX are permissible, especially when it seems that more doses may be necessary.

I’m not sure that I care, though.  In my opinion the myeloma markers should have turned the corner and headed back down within these eleven weeks of the study.  I have calls in to both of my Mayo doctors to discuss this, and to discuss the future regimen if I go off the study.  They are good at calling back – I’m sure I will hear from someone by tonight.  I’ll report back to you.

If you have actually read all of this, you have gone well beyond the call of duty.  You are my hero!  If you didn’t read all of it, I suspect you are in very good company :-)

Be well, be strong.

Come Again?

It’s been almost a year since I’ve written a blog. And it isn’t because I have not wanted to. I could tell you that it is because I’ve been so busy loving my children and husband. Or that I haven’t had time because I’ve been focused on taking care of my home, my family and myself, or any number of reasons that are absolutely true. But, those reasons have not kept me from writing a blog. Just like the apartment bed I’m sleeping in right now, my blog is a placeholder for the scariest, most painful part of my life, and I had no desire to go back there.

But here I am. Both in this godawful bed with 7 air conditioners buzzing right outside my window and writing a blog at four in the morning because I can’t sleep. In Little Rock, Arkansas. Land of wonderful restaurants, beautiful river trails, quirky little galleries and the University of Arkansas Medical Sciences/Myeloma Institute for Research and Therapy. My home away from home. The birthplace of my darkest moments. But also the birthplace of my only hope for survival.

Most everyone knows that I was diagnosed two days after Christmas, 2012, with a cancer called Multiple Myeloma. I had never heard of it, and why would I? Statistically, I wasn’t supposed to get it. But I did, and I went to Little Rock to find my hero, Dr. Bart Barlogie. He had me in remission before my first stem cell transplant, and after my second transplant I was considered MRD Negative. That stands for Minimal Residual Disesase. So, in the most detailed machine, one that looks at over 4-5 million events (cells) they could see no myeloma. And still, today, I am MRD Negative in complete remission. *Sigh of Relief* Or so you would think. Afterall, I’m writing a blog. So it can’t be all good news, right?

Every four months or so I come back to Little Rock for testing. It’s no big thing, just here a few days, lots of scans, blood tests, see the doctor and go home. This week was my first week to meet my new doctor, Dr. Van Rhee. He does all the trials on the Immunotherapy treatments. Very cool stuff. So I was happy and excited to meet him. Plus, mom and I had some burning questions about my genetic profile, kareotype, etc. These were questions we couldn’t get to Barlogie before he moved out to New York.

So, we were sitting in the little exam room and in walks the cutest, sweetest personality, maybe Sweedish, man and introduces himself as Dr. Fritz Van Rhee. He had the SOFTEST hands. Ank kind eyes. I liked him immidiately. He sits at his computer and pulls up what I recognize as my PET scan. Then flips through my chart and starts quickly going front to back to middle, then looking at the screeen, then flipping some more. Then he lands on one of the pages that mom and I wanted to tald to him about. It’s called a Foundatiuon One Report. It looks for mutations in my disease. He starts reading, looking at my PET, then stops and looks at me. Oh Crap. I realize right then that I’ve gotten much too used to good news. It’s time to tighten those facial muscles and engage my core or I might crumble right then.

“Have you seen your PET?” he says. I say no, that it has not shown up on my MyChart (our online system to review records). I glance over to mom and say, “This is why it wasn’t on there.” Dr. VanRhee is looking at his compurter and rotating my 3D body around and around. “You have a mass here.” he says. “No, that’s a lymphnode that I’ve always had, you can check my reports.” I reply. I can feel a nervous giggle working it’s way up my esophogus. “No, your node is here (he points), this mass here (he points…to a mass I’ve never seen before). And there it is. I can see my 17 months of remission explode into a million beautiful lights and fizzle out on the cold linolium floor.

So now comes the serious talk. I will be taken off protocol immidiately. For those of you that didn’t know, I do maintenance chemotherpay daily. I would have continued to do that for 3 years. That has been stopped and I have been given a regimine of Kyprolis, Monday and Tuesday. Dexamethasome, Monday and Tuesday. Revlamid for 3 weeks on, one week off. A double dose of Kyprolis. I don’t have any friends on that regimine. But I don’t say that. Remember, I’m working really hard to crumble because I know what’s going to be said next.

“We are going to biopsy this mass, Stephanie” Dr. Van Rhee says. “We need to know immidiately if there is myeloma there.” But, I’m confused at this point. “Wait a minute, I don’t have any myeloma cells in my marrow and I’m MRD negative. How can there be myeloma cells in the mass?” I say as I think I know the answer, but am probably in a bit of stupor and denial.

“This happens many times in relapse (not that word not that word not that word). You may have become Nonsecretory. You have no M Spike, no diseased marrow, no protein in your urine. You can grow lesions on their own. That is why we image you so much even though you are in remission. Had you not had the PET, we might not have found this until it was too late.”

I go inside my head at this point, and the rest of the visit is just prescriptions, describing my new chemo side effects, questions about home life and working, to which I replied that my homelife was my work. His response to that was “Good”. I can’t help but think of my nonsecretory friends. Many of them are already gone. Enter the stone face panic. I’ve become really good at keeping that in check until I’m someplace private.

The next dreaded thing to do is call Lee. Everyone who knows me knows how much I absolutely adore my husband. He is my best friend, one of only 4 people on this planet whom I am comfortable enough with to walk around without a hat or scarf when I had no hair, and we took our vows seriously. Every last one of them. Which makes this very difficult to tell him.

It was by far the hardest part of my day.

So here I am, now 5 in the morning, waiting for UAMS to call and tell me they were able to find a spot where they could sqeeze me in. If they cannot do it today, mom and I have to drive home and come back in a few days. Ugh.

After I’ve been biopsied, started my new chemo rutine at home and finished my first cycle of Kyprolis I have to go back to UAMS. I was so hoping they would tell me this time that they are confident in my health, that I’ve done great, and that I don’t havve to come back for 6 months! That is what should have happened. Instead I have to come back in 5 weeks.

So, Friends, I’m sorry I haven’t kept up via my blog. I promise to do better. I’ve met several people that have found the doctors at UAMS through this blog, so I believe there is a purpose other than my own. But please pray for me. Please pray that the core biopsy comes back clean for no myeloma. That I am not a nonsecretor, that I’m still in complete remission and am MRD Negative. Please pray for the strength of my family, too. It shreds my heart to know that we may be getting ready for round two.

“29 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:29-31

Sunday walking

We were out about 6:15 and nobody else was there yet, so nice.

Todaywas equal sunrise, sunset. 6:55 sunrise, 6:55 sunset. It’s cloudy today but still warm @ 85. Not too bad.

B leaves on his trip to Maryland tomorrow am at 3am to get his 6 am flight. He’ll be gone till Friday.

This week I go in for my Invisalign set up. I’m glad as I’m sick of this other thing in my mouth. I’m hoping the Invisalign is easier to eat and talk with.

I’m going monday or Tuesday to get a wig. What you say?? Well, since July I’ve lost half my hair due to the steroid I’m on. That’s the best the doctor could come up with. My dex was increased to 20 mg and he’s guessing it’s due to that. But I’m pretty self conscious about it so , my last wig I had when I didn’t have any hair, I gave away last year.  I think I paid @ $125 or so for it . So I’m willing to pay that for something again.

the hair is still coming out and until it stops I think I’m going to need the wig. My hair has been quite long and full. Now it’s wispy and mid length.

Oh, well, it’s always something.

Im mid way in my Pom cycle so, still a bit to go till I can get a blood test. 2 weeks about.  I’m anxious to finish , get the results and plan the next stage. I don’t hold out too much that this cycle is the one.

Not to be pessimistic , it just hasn’t done it in the last 4 cycles so….