It’s been awhile

 Edie  3 Responses »
Jan 112012
 

It seems my cold is finally running it’s course [at least I hope]. On Saturday it was a sore throat, Sunday I was congested and had a constantly runny nose, and yesterday was an extreme headache and a mild cough. Today the cough as progressed a little beyond mild. (I even had to resort to taking 1 Tylenol and some Hall’s throat lozenges to help ameliorate the discomfort.)

But rather than dwell on my problems any more, I thought this would be a good time to update everyone on Edie’s condition, especially since it’s been awhile (just about a year) since I last posted anything about Edie.

Since that time, Edie started on maintenance Velcade (infusions every other week). She had also been taking Biaxin on a regular basis, because her doctor told her it had shown some efficacy in treating Multiple Myeloma, but due to some side effects, she went off it to see if that would help.

About that same time, her free light chains started to rise. Whether that was coincidental, a direct effect of the Biaxin, or the maintenance Velcade, is not for certain, but regardless she restarted the Biaxin. She briefly tried [3] subcutaneous injections of Velcade, thinking that might be better than direct infusions, but did not seem to be getting the desired results, so she returned to weekly infusions of Velcade, and is finally starting to seem some positive results. Let’s just hope the trend continues!

She’s still dealing with neuropathy, and the occasional dizziness, but otherwise isn’t doing too badly. (Not sure I’d be doing as well in her condition, but …….)

On a side note, due to some problems with the Kaiser drug formulary, she has gone off Lyrica, which she has been taking for her neuropathy, and has switched to Nortriptyline. Not sure exactly what the problem is with Lyrica, as the Medicare website indicates it is on the Kaiser formulary, but whatever the case, Nortriptyline is considerably cheaper, and if it’s just as effective, everyone benefits.

Only time will tell.

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 Posted by Marc at 10:07 am  Tagged with:

It’s a delicate balancing act

 Edie  No Responses »
Jan 282011
 

As I posted a couple of days ago, Edie’s latest treatment protocol (Velcade + Decadron) seems to be working. Maybe even better than previously thought.

Not only has Edie’s kidney function improve significantly, but her Freelight Chains have dropped dramatically, from 2600 a week ago to 62 now. That’s still not in the normal range (<19), and her back is still hurting some, but it’s a good indication.

Even the neuropathy doesn’t seemed to have gotten any worse.

Of course neuropathy is still a concern, so the decision now is what to do next? Do another 21 day cycle which includes 4 more infustions, or do maintenance Velcade at a frequency as yet to be determined?

Unfortunately there’s no cookbook for this kind of thing. Everyone is different, and we all can react differently to the same drug(s), so a trial and error approach may be the best path.

Wouldn’t life be so much simpler if we were all the same, [and thought alike]!

In any event, Edie has an appointment with her oncologist on Monday, so we’ll see what she suggests, but at least for now things seem to be looking up for a change.

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 Posted by Marc at 7:00 am  Tagged with:

At least the Velcade is working

 Edie  No Responses »
Jan 192011
 

It seems the second go around of Velcade plus Decadron is doing its job on Edie’s myeloma. After just two treatments, her blood counts are improving, as is her kidney function.

So all would seem well again. Unfortunately that is never the case. As I’ve learned many times in the past, there always has to be some bad that goes along with the good.

If you remember from her first go around, it was the Velcade that caused Edie’s peripheral neuropathy (PN), and now it seems see she is experiencing some additional PN, above and beyond what she already has been experiencing.

Plus last night, after her 3rd round of treatment, was a particularly trying one. She woke up around 12 AM with the shakes, and was not feeling so well. So she took a Lorazepam, and went down stairs to see if she could sleep on the recliner. A few hours later, when I went down stairs to see how she was doing, she seemed to be feeling a lot better.

The only problem now is she can’t seem to stay awake for more than about 5 minutes at a time. I guess that Diazepam does its job as well.

So now the decision is whether to go through with her 4th [and last] treatment in the protocol, which is to treat on days 1, 4, 8 and 11, and then take 10 days off before beginning anew, or just take a few extra days off, and then start fresh again. The latter seems like the logical approach to me, but then I’m not the patient, and Edie does have an appointment with her oncologist on Friday (the scheduled day for her 4th treatment), so the decision can be made then when hopefully she’s feeling even better.

And to think I thought deciding whether to continue working was a trying experience. Certainly that pales in comparison to what Edie is going through right now, and why I don’t like even thinking about what it might be like should I have to begin treatment.

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 Posted by Marc at 3:52 pm  Tagged with: ,

A great dilemma

 Edie, My MCL, Work  4 Responses »
Jan 142011
 

For the past couple of months I seem to be getting more and more fatigued (I know my cycling abilities have sure been lacking), and my spleen has been becoming more bothersome, especially during my long commute to work. It may just be this time of year (which I have never liked), along with the below normal temperatures and above average rain fall making me feel this way, but whatever the case, things are starting to get to me.

Seeing how I was feeling during my last appointment, my oncologist put me on permanent disability. Initially I thought that is what I wanted. No more making that long commute 2 days a week, and no more having to deal with working for a publicly traded company, with all the little idiosyncrasies I never had to deal with before. But the more I thought about it, the more hesitant I became.

There are benefits to working, if for no other reason than it breaks up the monotony of the everyday routine. Then there is the health insurance question.  I’ve grown comfortable dealing with Kaiser and my current oncologist, and going on disability would end that. At least it would end my company paying for it. I could afford to continue paying for the same coverage on my own (through COBRA), but that seems like such a waste, when I don’t have to, since I am eligible for VA care.

So before I did anything I decided to talk to my boss, and see if we could make some other arrangement. There was one possibility with our sister company in Paramount, which would have been perfect, but that position was filled the day I talked to my boss about it. The GM at our sister company indicated there may be some other opportunity for my particular skill set, and that is still going on, but that isn’t quite as easy as it would have been in the past, when we weren’t part of a huge multi-billion dollar publicly traded corporation.

Plus I just discovered Arcturus has disability insurance as well, so collecting that along with CA SDI, and Social Security disability, I could make out like a bandit (making more money not working), for some length of time. Plus I have 6 weeks of vacation accrued which I can collect as well.

So now I’m stuck in that place I didn’t want to be. Even more than this time of year, I hate having to make decisions.

So in the mean time, I’ve turned in my paperwork for disability to my doctors office to send to the state of California, and I’m taking the next two weeks off for vacation, mainly to help Edie, since there is some concern with side effects from one of the drugs she is taking (Denosumab), and also to mull things over some more.

Stay tuned!

Sorry for the duplicate posting

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 Posted by Marc at 7:32 am  Tagged with:

Another miserable day, in more ways than one

 Edie  No Responses »
Dec 282010
 

It’s not bad enough Edie was diagnosed with multiple myeloma 5 years after my diagnosis with lymphoma, has already undergone radiation treatment [twice], several different chemotherapy iterations, and a stem cell transplant (while I have had no treatments or major symptoms), today she’s going for here 2nd blood transfusion in just 3 weeks.

She had to go for the first transfusion about 3 weeks ago, after taking a round of Melphalan, which did a job on her immune system, dropping her hemoglobin and platelets to [I assume] dangerously low levels. (Why else would the doctor order a transfusion?)

Her counts did initially recover after the first transfusion, but unfortunately the results of her latest blood test (yesterday) indicated a drop in hemoglobin back down to 7.5 g/dL, the same level they were just before the first transfusion. Her platelets managed to increase from 27 thou/mcL to 55 thou/mcL, but that’s not much consolation, as that is still pretty freakin’ low, and is more likely related simply to test variation than anything else.

So off she went to her 8 AM appointment with the infusion center for 8 hours of fun and relaxation [NOT!], while I stay at home trying to stay dry. And yes it is raining again!

I know I’ve said before, until you’ve walked in the shoes of another, there’s no way you can ever know how you would respond in any particular situation. I still believe that to be indisputable, but I am pretty sure of one thing, I doubt I would be handling this entire situation as well as Edie. Heck, I’m having enough trouble just dealing with Edie having to go through this ordeal.

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 Posted by Marc at 7:18 pm  Tagged with: ,

Carpe diem!

 Edie, Life  3 Responses »
Nov 132010
 

The month of November is not starting out so good. And I’m not just referring to my normal complaints, i.e. shorter days, colder than expected temperatures (44°F this morning), work, and a myriad of other issues I won’t get into now.

It even goes beyond the fact Edie’s lastest chemo regime (Bendamustine) isn’t working, and she going to be starting on Melphalan and Prednisone as soon as her counts improve.

It all started last Wednesday when I discovered a friend (family almost) went into the hospital for brain surgery because of seizures, which was complicated by the fact an artery was nicked during the surgery. Now she’s in an induced coma, and there does not seem to be any clear indication of her prognosis, or even when they are going to bring her out of the coma.

Then on top of that, Edie’s sister just called to inform us her oldest brother just suffered a massive stroke, and the prognosis doesn’t look good. I was shocked. I just saw Norm when we were back in Ohio last month. We talked a little, and he seemed in good spirits. I even thought he looked pretty good, although a number of people commented just the opposite.

It seems like they’re just dropping like flies around us, and while Norm is getting up there in age, so you could say it’s not unexpected, Stacy is at least 10 years younger than Edie and me, and that just doesn’t seem fair.

Oh well, no one ever said life was fair, but it sure does give new meaning to the expression “seize the day“.

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 Posted by Marc at 2:34 pm  Tagged with: ,
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