Beth’s Blog

My doctor is retiring

We recently learned that our local oncologist is retiring.  He’s 52 years old and has had it with the medical profession, citing increasing difficulties with insurance companies and litigious Americans as a few of the reasons for early retirement.  I’m really going to miss him.  He was probably the best doctor I ever had in my life. He shoots straight from the hip and tells it like it is.

I’ll continue with my quarterly visits to Duke and will see the replacement doctor at this local practice every few months.

No blood was drawn, so it’ll be September before I have any test results to share again. In the mean time, I’ll assume I’m still stable and myeloma will stay in the deeper recesses of my mind.  It’s been a pleasure to have been treatment free for almost a year now. I still have myeloma, but it’s been sitting still.

IgA is pretty stable

This is a chart of my IgA values since before the SCT last summer.  I stopped Velcade and Doxil in July, 2007 and the SCT took place at the end of August. This is quantitative serum IgA in mg/dL. The test on 10/11/2007 was the first one I had after stem cell transplant.

I’ve never once regretted having the SCT, and only wish I had done it earlier. In my case, nothing was keeping the mm under control for very long. The SCT has allowed me to be off treatment for 10 months now, which is a long time for me.

Duke allows me to look at my lab results online, and I’ve been waiting to see what my m-spikes are (I have two).  So far, they’ve stayed under 0.5 g/dL when added together.  That’s so much better than the 3.4 g/dL they were back in 2003.

The reference range at Duke’s lab for IgA is 46 - 287.

Some lab values

I got the results of the tests done Monday at Duke. The full report was faxed to my office, and I haven’t seen it yet, but here’s what I have so far.

M-Spikes (I have two m-spikes)

Last month: 0.19 and 0.12 g/dL (Total is 0.31 g/dL)
This month: 0.16 and 0.22 g/dL (Total is 0.38 g/dL)

Immunoglobulin Profile

Last month: IgA 374 mg/dL Reference: 46-287
This month: IgA 465 mg/dL Reference: 46-287 (up 91)
Last month: IgG 709 mg/dL Reference: 588-1573
This month: IgG 603 mg/dL Reference: 588-1573 (down 106)

I have July and August here. Needless to say, I was fervently hoping for a drop in the IgA and an increase in the IgG.  The one good thing is that the IgG is still in the normal range, where it has never been since I learned I had MM.  It was usually below 300 mg/dL.

Can someone give me a good explanation about why I have two m-spikes? I’ve asked doctors about a zillion times, and I have either forgotten what they told me or didn’t understand it well enough to even remember.

Hair Update

I thought I’d give a visual progress report of my hair growth.  Here’s a picture I took today.  You can compare it to one I took on October 13, 2007.

Kind of weird, huh?  And, not too attractive. My hair started to fall out in September, after I had high dose chemo (melphalan) on August 28th. Some spots still look bald, even though there’s a covering of very fine, nearly invisible hair.

I had a follow up appointment at Duke today.  I won’t have any results until Wednesday afternoon.  Not anything important, anyway.  I didn’t even bother getting a copy of my CBCs. Dr. Long just told me they were completely normal. Throughout my entire MM experience, my CBC’s have hardly ever been anything but normal.

Hickman Catheter

This is a picture of the Hickman catheter that was installed in my chest for the stem cell collection and SCT during the summer. You can see a picture of the insertion site here.  I got the idea of taking a picture from Eric Vogt, who photographed his from tandem SCTs.

You can see a picture of the Neostar triple lumen catheter here. That’s what I had inserted at Wake Forest prior to chemo and stem cell collection.

Test results

I got the results of the tests done last week at Duke. The report states, “Compared to 8/3/07, no significant change in previously characterized IgA lambda components from 0.28 to 0.19 and 0.12 to 0.18 g/dL.” The PA let me know that it’s possible for the m-spike(s) to drop more in the next few months. One good thing is that my IgG is normal for the first time in five years (probably a few more). It was 223 in February, 2003, for example.

Immunoglobulin Profile
IgG 709 mg/dL Reference: 588-1573
IgA 374 mg/dL Reference: 46-287
IgM 29 mg/dL Reference: 57-237
IgE 12 mg/dL Reference: 4-269

One Month Check-up

Tomorrow I’ll have my one month check-up.  It will have been a month since I was released from the Duke SCT Clinic.  I feel pretty well, with no major complaints. I’m filling a jug for them, and will have blood drawn when I get there.  Aside from CBCs, it will probably be at least a few days before I get any results.

Home at last!

I made it home yesterday.  I’m SO glad to be here. I went straight to bed when I got home, and slept for what felt like forever.  I got up at 5:30 this morning, walked the dog and then went back to bed until 10:30.  It felt great to sleep in. It’s nice not to be on anyone else’s schedule.  I found myself feeling bored this afternoon, but that passed.

Thanks to everyone who made this easier for me.  You all know who you are. Thanks especially to Rachel and Monica.

More tomorrow!

Day +14

I’ve just been told I’m going home tomorrow! I feel as well now as I did when I came in here, so I can only imagine that things will get better and better as time goes by. Years of drugs and chemo take their toll. This procedure will give me the best possible chance of having some long drug-free time.

I do feel tired, but that’s because my HGB hasn’t returned to normal yet, and there was that high dose melphalan a couple of weeks ago. I’m sure it takes time just to get over that assault.

When I get home, I’m starting a new life. I’m going to take good care of myself and make it as difficult as possible for the myeloma to come back.

Oh!  I get this catheter out tomorrow!  That alone is worth some celebration.

Day +13

My WBC today was 7.0! My HGB dipped a little to 9.8, and the platelets are at 23. This chemo experience was a lot like Cytoxan, in terms of what it did to my counts, with the exception of the WBC, which got to 400 at its lowest.

Overall, the experience wasn’t as horrific as I imagined. I wouldn’t call it a vacation though.

I met someone here who had an allo transplant, which did not engraft. There was no match for her in the national registry. She had to use her son’s stem cells, which they said didn’t match. There were limited donors because she’s an African American. I wanted to find out if anyone has run a donor drive? I would like to try to help somehow.

Day +12

The only thing I have to report today is that my WBC is 4.7! Can you believe it? As soon as I get the rest of the results, I’ll post them. It was mentioned that I might get to go home earlier than predicted.

I forgot to mention that I had my head shaved on Saturday.  My hair started to fall out some, so my sister went ahead and gave me a buzz cut.  Since then, it’s been falling out like crazy.  I could be bald in a few days.

Labs

My WBC was 1.3 today, which is quite an improvement over yesterday (0.3).  My nurse tells me it wouldn’t be a stretch for it be double that tomorrow.  I could be going home as early as Friday.  I hope I can.

I’m 46 years old, but it bothers me that my parents don’t call every day to see how I am.  In my fantasy, they would call to ask my sister how things went every day.  They would even ask to talk to me. My mom, who lives about an hour away, would come to visit often.  The truth is, if I say nothing, they won’t even know when I’ve returned home.

Day +11

It’s been 11 days since the first day my stem cells were infused. Time seems to be passing by very slowly, which can be torture at times.

I’ve been having some issues at home, which make me wish I was out of here and back home. My dog is going to be boarded Monday, I hope, which will resolve one of the problems I have. My housesitter has been unreliable, and I’ve found out that my dog has been left alone some nights. I also found out that my cat was left shut in a room for at least a day with no way out. It’s too hard to have to worry about getting better and what’s happening (or not happening) at home.

I called my neighbors, and they’ll keep an eye on things for me.

Other than that, I can report that my WBC went up yesterday to 0.3 from 0.2. My platelets were low at 14, and my HGB was 9.6.

Overall, I feel ok. I’m tired, so I just sleep when I need to. The mucositis is getting a little better. Not so much in the lower GI area, but better in mouth and throat.  Oh, except that I hurt my throat this morning on a sharp piece of English muffin.  The English make some dangerous food, so beware.

I’ve had some very strange problems with two of my toes.  They’re extremely black & blue.  I’ll have pictures, of course.

I’ll get my labs soon, I hope, so I can report on today’s results.

Day +9

I had some good news today.  My white count doubled!  It went from 0.1 to 0.2.  Progress is being made.

I need platelets and potassium today, so I’m going to get hooked up and I’ll write more later.

Joyce is in treatment area B, too, but she’s in a room by herself.  I think that’s meant to protect us all from the icky stem cell smell.  My new nickname for her is “stinky.”

Day +8

Things are progressing. I haven’t received my labs yet, but I feel pretty well. I suppose that’s a good sign. I’m hoping my white count is on its way back up. We’ve been working on that during Reiki. The WBC was still 0.1. Oh well, what can I do but wait? Here’s a little audio. SCT Day +8 I’ve had mucositis. This is not fun. It hasn’t been terrible, but is less comfortable. I have some mouth/throat sores and some GI problems. So far, I haven’t had to resort to pain meds.

This is a story about being asked for a stool sample. This is a PG-13 story. I added this on January 4, 2008.  You can hear that I have a cold during the time I recorded this.

Joyce is getting melphalan today.

I’m here in treatment room B, where my friend Joyce is just starting the SCT process.  She recorded a note for you all.

sctday07a.mp3

Day +7

SCT Day +7

Things aren’t as terrible as I’ve been imagining all these years.  That’s not to say that I think it would have been better for me to have the SCT up front.  There’s no way I can know how my awful anxiety would have affected the transplant processs.

I have a bit of mucositis and thrush.  Nothing painful.  Just annoying.

Day +6

HGB: 11.4
WBC: 1.3
PLT: 50

I also tried my my hand at a podcast, just to see how that goes. Most days I don’t really feel like typing. I make too many typos, and I get bored with it too easily. I can’t remember when was the last time I felt so bored and just wanted to sleep, like I do now.

Day +5

It’s day +5.  My WBC is now 1.7. Not much happened today. I got some fluids. My blood pressure was pretty low.

Amy asked how the re-infusion went.  I hated that part. She mentioned that was a prime opportunity for nausea to creep in. I had some Zofran, Ativan and some oxycodone in my IV.  If you even anticipate needing these things, make sure you get them.  Also, ask for a slow infusion.  There’s less discomfort that way.

Day +4

This is day +4. It’s also Kathy’s birthday, so we’re wearing hats. I think I might be the only one wearing a hat.

Here are my lab values for today:

Hgb: 10.7 g/dL (ref range: 12.0 - 15.5)

Plt: 104 (ref range: 150-450)

WBC: 2.8 (ref range: 3.2 - 9.8)

There’s more, but I’ll add that later.

So far, I’ve expererienced mild nausea a few times. We all know how afraid I was of that. In fact, it made me put off the SCT for years. I find that if I just keep eating small snacks, it makes me feel better. I try not to let myself get hungry.

I should be getting out of here for the day. I’ll probably take a quick nap when I get back to the apartment, and then try to catch up on some work.

More soon!

Day +3

This will be day +3. Yesterday wasn’t too terrible. I had a few periods of nausea. A local Reiki practictioner came to the apartment to help me through the second one. It really did help. I ended up asleep, which was good. If you’ve had a stem cell rescue of any kind, I wonder if you experienced the intense discomfort I did when the cells were being infused? I felt pressure/discomfort/pain across my midsection. It was unpleasant. I don’t mean to scare anyone, but if that did happen to you too, you weren’t alone. I have a way to go before I can go home. They expect that I could go as early as day +16. Right now I feel just fine. When I wake up for real, in a couple of hours, I’ll try to find my labs and record them here.

Day +2

This is my first day of simply recovering, after having had stem cells infused for 2 days.  I felt pretty queasy this morning, so I spent a while in the clinic with some IV Zofran and Ativan.  I’m not sure what caused this to happen, since I felt fine on the way to the clinic.  I kind of just wish I could stay home now.  I think schlepping into the clinic causes problems.  There’s nothing that can be done about that though.

I had a good laugh, which really did help me to feel better for a bit.  Now I think I’ll rest for a while.  Then I have to make myself exercise!  They say it can help.

This is day +1

Even though I’m still having more stem cells infused today, it’s still called day +1.  Yesterday was uncomfortable.  I believe it was  a reaction to the preservative, DMSO.  I felt a great deal of pressure and discomfort in my chest while the stem cells were being infused.  Luckily, there are fewer to do today.

I’m keeping up on the ativan and compazine to try to avoid any nausea.  So far, I’ve felt a little queasy, but nothing major.  I’ve been told that after  day 5, I should be past that.

My iPod broke last night, so Todd went and got another one for me.  I have some things to transfer over.

I just saw Dr. Long, who is a great doctor.  I highly recommend him if you’re in the market for a stem cell transplant.

Day 0

This is day 0, the day on which I’ll receive some of my stem cells. I’ll get more tomorrow, too.

They’re getting ready to do it soon, it appears.

Something I had (maybe chemo?) gave me terrible indigestion last night and this morning. I also had a bad headache. I didn’t sleep very well, so I hope to catch a nap while I’m here.

This is a picture of one of the syringes filled with my stem cells. I had such an unpleasant experience with the re-infusion that I hate to even look at this!

Done deed

There’s no turning back now. I had my high dose melphalan today. If they just sent me home right now, I’d probably die from an infection in a matter of days. The chemo is myeloablative.  It kills the bone marrow. My stem cells will be infused over the next 2 days. I don’t fully understand why it’s going to take 2 days, but I’ll find out tomorrow. I’ll have my own special room at the clinic while this is being done. It should be more comfortable than sitting out in the open in a chair. It’s very quiet here, and I’m sensing an opportunity to take nap.