Labs in and other stuff.

My CBC was great. All good there except the hemoglobin was still .5 above normal.  He had wanted me to drink 8 glasses of water a day. I did pretty good but not 8 glasses. Maybe got to 5-6 a day plus tea. I guess hemoglobin has to do with the oxygen in your blood. So he thought maybe I wasn’t hydrating enough.  I’m not worried at only .5 over normal. but I’ll see what he says in June.  In other good news, my kappa light chains still normal but it went up 2 points. So from 12.6 to 14.2.  So here’s that trend of going up. I know I’ll come out of the normal range at some point but for now, it’s still in the normal range even with the 2 point increase.  My Lambda went up too from 10.9 to 11.5 so another increase. And the ratio went up to from 1.16 to 1.23 . In myeloma numbers, the ratio is most important so still an increase. These are all in values of mg/L for those that want that .  I can’t say I’m not a bit disappointed because I am just a little but hey this is month 10 going into month 11 of no drugs andI’m still within normal ranges. Oh, the good news too, was no detectable M-protein. So that’s the great news. the light chain tests though are more sensitive to myeloma cell, so the increase does show a trend. But, for now, I will celebrate LIFE!! I feel good well except for the aches and pains of normal stuff.  My one year of stopping Velcade is June 23. June is never a good emotional month for me as I was officially diagnosed on June 15 of 2005. Funny how we remember some things exactly.  Oh well, I’m grateful for modern medicine and my doctor and park and the ducks and the everything. ( That’s supposed to be funny).

It’s been windy here and we haven’t sat out at dinner even though the temperature is nice. The allergies are kicking in when that wind blows. I’m hoping to BBQ tonight if the wind is gone.

Here’s a picture of Hobbles the duck. yesterday we couldn’t find him at the park but he was back today. Whew…IMG_0700he’s called hobbles because about 2 years ago he got injured somehow and was not using his one leg. Now he uses it but just hobbles. He’s our buddy in the morning.

Labs still normal!!

After I e-messaged my doctor he messaged back that my labs were normal. But I  still wanted a paper copy. So he sent that and I got that on Saturday. So this is month 7 off Velcade and Dex. I feel pretty good.

Kappa light chains 12.7 mg/L

lambda light chains 12.9 mg/L

ratio .98

So, all in all, I am thrilled.

I cancelled the appt to see him this month as I don’t need to and will reschedule for March after the next set of labs.

Last night the chicken adobo was really tasty. The tofu one needed more of the sauce. But I’ll definitely make this again.

Tonight I have homemade mac and cheese and a big salad.

labs look good!

My CBC came in all good. My usual slightly high MCH and something else. I think I vaguely remember my oncologist saying that this was due to the transplant. But I don’t know.

So the exciting news is my Kappa and lambda light chains are still all normal range plus the ratio is normal at 1.01

BUT, and this is a big but, this month’s numbers went up another 1 point from last month. So, last month my kappa light chains were at 11.7 mg/L and this month 12.8 mg/l  so there is a trend here as this happened even the month before that. So, there is movement but at least it’s still all in the normal range. I see my doctor next so we’ll see what he says. Probably don’t worry about it till there’s something to worry about.  The high end of normal is 19.4 so I’d still have a way to go.

So I’m thrilled to be at 6 months and still all normal.

Today, I’m going to the gym and then get cash for gas and food. Then to meet a friend for a coffee.

Last night’s dinner was awful. The couscous ended up mushy, the baked cod was chewy and the spaghetti squash was actually pretty good.

Tonight is crockpot Thursday, but I don’t have anything really planned for it. I could do beans but I don’t think so today. My back up meal is breakfast for dinner.

Update: normal SPEP test. which is serum protein electrophoresis !! The light chain test is more sensitive so with the trending it probably means movement, but for now, I am one happy person. It’s a great way to end the year.

Celebrate!!

Good news. All my labs have come back in the normal range. No abnormal protein on the SPEP test. Hurray… kappa light chains at 10.9   Lambda at 9.3   ratio at 1.17

So kappa went up slightly, lambda went down slightly and the ratio went up slightly.  All still within normal parameters. So next month will be interesting, as it will be 2 months off Velcade.  I’m thrilled to have good results and feel very fortunate. I’ll take whatever I can. Sometime this fall I’ll need Zometa but not right now.

Other good news, the Questran has really been a miracle worker. No GI issues at all.  Normal everything plus there’s no urgent , better get to the restroom.  Honestly, I’m not sure why I waited so long to try this. Since we’re in Tahoe this week and the bathrooms are a walk away, I’m feeling confident I’ll be okay.  So happy with this development.

The other good news is our credit for completing 6 years of the HAMP program has been credited to our account. So we maybe going ahead with the Harp program refi but I haven’t heard back from anyone  yet.  with the interest rate due to go up again( as per the Hamp program) in October, we need this to go thru so our payments can be lower.

I emailed both loan officers and do hope to hear something about it today.

Dinner : I think I’m ordering a pizza . It’s still going to be 103 today so too hot to use the oven. Last night my daughter made a nice tomato ,fresh mozzarella salad with grilled salmon. Quite yummy. Plus I didn’t have to cook.

On another note, I went to the Koffee klatch yesterday. Nice to see everyone. But the library news is 6 hours taken from the Applegate branch. Wow, I certainly wouldn’t have a job anymore. I’m guessing only the manager will be doing those 4 hour shifts. It’s really only a matter time before they close Applegate. Actually, I was pretty shocked since with the other 2 branches closing I thought Applegate would get more hours.  Plus the hours are only going to keep circulation down since it’ll be 10-2. No after school, no working people. That will, of course, eventually support that circulation is so low, we need to close this branch.It’s a shame really to see this happen but it doesn’t surprise me with the current administration. Oh well, I have backed away and feel good about supporting Nevada County libraries. I love libraries and am always grateful  for their existence.

Thursday updates!!!

The exciting news is my kappa light chains went from 1010 to 45 after 4 shots. Velcade is a proteasome (sp??)inhibitor and I must be responding wonderfully.  Pomalyst is an immudualtory(sp??) drug so works differently. I did have great results with Revlimid before Pomalyst for 5 years then it just stopped being effective. To say I’m excited is an understatement. What a drop. So FYI normal high for kappa light chains is 19 so I’m almost there.  the Lamda light chains were in the normal range at 9.2 mg/L … Amazing!!! I can hardly believe it. Overall I feel good. Maybe a little spacey but I can handle that. My labs are absolutely great except with velcade the platelets are affected. So mine have dropped significantly. But the nurse said the do rebound so that’s good news.

Today we drove down to Sacramento for my shot. We left at 8 am and missed most of the heavy traffic, so we made it Mercy Cancer center by 8:45. That is really good. I was in an out in no time and had the oncology nurse that injects slower than the other nurses.(remember the stabber) 🙂 I’m so happy about my numbers that I don’t care how I get the shot.

Then we went to Winco for stuff, then Costco. We were on our way home by 10:30.How’s that for being in time space continuim.  Anyway, I’m starting to feel the dex which I’m now taking in the morning. Pat Killingsworth had a doctor friend of his say taking dex in the morning works with you body better. I have to say since I’ve done this now for the last month, it is better. I don’t get quite as high or the crash doesn’t seem quite as intense. We’ll see how today and tomorrow goes.

The Budget stuff seems challenging. I’ve had 6 no spend days, so thats good. But once again I’m just not putting savings aside except for our automatic 401k. At least we’re doing that. Our expenses, cost of living, is just covered by B’s paychecks. A little frustrating.

Also, I’m sure we’re going to get hit with taxes. We are going to have to do payments , because we just don’t have x amount for taxes ready to use. Since we sold stock last year, thats where the hit will come. But , that paid for the roof, and septic fix, and gravel and who know what  else.

Anyway, off to sleep off some of the dex!

 

Dr. appt day

I’m off to see my oncologist this morning. It’s a later morning appt ( which I don’t like) but today it’ll be fine.

My labs came back with low WBC , low RBC, slightly low neutrophils, so all that adds up to being tired a lot. Plus, the not so good news is my kappa light chains jumped up, so definetly not good. The ratio though is 59% between kappa and Lamba so, still below the 100 mark . But that it’s going up is a concern, plus I seem to be having more aches in my ribs and that right leg. I don’t want an MRI now but if it continues I will need to make sure there aren’t lesions ready to cause a fracture. I called UCSF about the specialist Dr. Wolf. It’s a lot of sending records etc, and too much for me but I will ask my doctor to do it, I think.

I’d like to change my treatment since I don’t feel the revlimid is really helping the KLC , but I’ll see what he says today. I’ll do an update later.

on other fronts, I called to make arrangements for payments on the $2000 co pay, so that’s set up, but more bad news is the doctor who did the bmb will still bill me. So more bills will show up. What a bummer and really how do we handle this.

I’m definetly depressed by it all but what can you do. I guess next time, I’ll suffer thru the office one.

On a happier note, the kitchen is all painted, we moved the pantry shelves, and now I started the primer in the other front area. I can only do so much, so I’m hoping my husband can finish the primer this weekend and then I can start the ‘simply white’ in there. It looks good even the little I did. I think  I’m going to check ikea for stools with backs. I use a wooden one with no back. It’s fine for a while then gets hard to sit at.;

I’m pretty sure I can find something inexpensive at IKEA. It’s so great to paint and clean up areas. I don’t have a lot to declutter, just freshening up.

Well, I’ll update later.

update

it it all went pretty good! We’re going to switch to pomalyst. So I have to fill out the paper and sign.

Hopefully, not much different than revlimid. But hopefully drops those light chains. He still reiterated that we could keep going on rev, and go back to 20 mg dex, and just keep watching. But, I feel it’s time to get at this.

He said fine with Dr. Wolf referral and I said I wait till next month.

Friday stuff, doctor update!

It’s been kinda a weird week. Last weekend I noticed having pain after i urinated.. Hummmm, so Monday off I go to my GP. Sure enough I have a bladder infection. Hummm, how. Well, it’s not pleasant but if you have a lot of diarehea, well, I guess you can put 2 and 2 together. So, today’s my last antibiotic. I don’t think , that I can remember , ever having a bladder infection. Well, live and learn.
So, since I had a low grade fever I didn’t work Tuesday, which means I lose 4 hours. Oh, well, it’s also a hard day as the other branch’s extra person was gone on vacation. It’s always something.

So, we looked at some more cars for my daughter on Wednesday. We eliminated the Impresa subaru. I’d love for her to find an outback, but they are way too expensive and used ones are really hard to find without a million miles on them.
So, I think we’ve narrowed it down to a Honda CRV. It’s a nice small size suv. And it has AWD. We looked at a 2007. I’d like to see if we can find one just a little newer. But , they are hard to find too.

So, doctor visit update. My kappa light chains are the same @ 780, lamda @16 , ratio @ 48. Still high but all other indicators are normal . Well my mprotein went up a bit to .5
He thinks one, I had the infection, two, we reduced my dex dosage and that will certainly have an effect.
I’m okay with it all. He says he does think the revlimid is still working so, I just started the next cycle. Also, I am IgG kappa myeloma. I actually never knew that. Or maybe he never told me. I don’t remember? Any Maybe so.

Anyway, like I said I’m ok with it right now, we’re monitoring every month and any sudden changes would be known pretty quick.
I’m off to the library in a bit. I missed it this week and am anxious to hear what’s new.
It’s cloudy but warm here @ 65-70 no rain.
I may drive my daughters VW to check whether I want to keep it as my car. I so love my van but I also love vws so… I buy it from her and then she’d use that money as part of her down payment.it has had some problems in the past but it has low miles and she just bought tires and did the timing belt which was. $700″bill.
Unless they gave us a great trade in ( unlikely) I’d maybe want to keep it or sell it privately.
Well, that’s it. The JKWP is at 653 continuous days of walking.