Edie | Living with MCL

It’s all clear!

May 252012

Just got back from the Dermatologist to have the stitches removed from my Basal Cell Carcinoma surgery, and all the cancer was removed. That’s certainly good news as I was not looking forward to going through that again.

I’m still not free of all bandaging, like I hoped, as the doctor glued 3 steri-strips over the wound. I’m just supposed to resume my normal routine (shower as if they weren’t there), and eventually they’ll fall off in about a week. At least the steri-strips are flesh colored, so they don’t stand out as much as the other bandages did.

There was even more good news this week, as Edie’s Freelights have stopped their upward trend. It looks like the Vorinostat is doing it’s job on Edie’s myeloma. After only two weeks on the drug, Edie’s Free Lightchains, have fallen about 10%. It’s not a huge number, but at least it’s heading in a better direction.

So with all that, and seemingly continued stability on the MCL front, I’m feeling pretty good about things heading into the Memorial Day weekend. I’m pretty sure something will come along to change all that though.

Through the “Donut Hole”

Edie, Health Care 2 Responses »

Apr 302012

So Edie’s free lights are continuing their upward trend, and her doctor has recommended adding Vorinostat (Zolinza) to the mix (4 – 100 mg tablets per day for two weeks, then off a week). A recently completed clinical trial has shown it to be efficacious when combined with Velcade, and since the Velcade alone hasn’t been doing the trick, this seemed like the logical alternative.

The only problem with Vorinostat is it’s given in pill form. That means it comes under the Medicare Part D Prescription drug plan, and this drug is not cheap. $4,945 for a 14 day supply. Fortunately we were only on the hook for about $2,300, but it could have been a lot worse.

We would have been on the hook for the entire amount, if it weren’t for the Affordable Care Act [AKA ObamaCare], which mandated a 50% discount once you enter the donut hole. In addition, thanks to the Affordable Care Act (ACA), the amount of the discount provided by the manufacturer is also counted towards the Out-of-Pocket cost, and gets Edie to within $300 of the catastrophic coverage portion of Medicare Part D, where the cost of drugs is reduced dramatically.

Fortunately we’re able to afford the $2,000, but I can’t help but think about those who don’t have an extra $2,000 ($4,000 if it weren’t for the ACA) laying around? What do they do? Go without? Yeah, there are programs, but just how poor do you have to be before you qualify?

I never did understand the reasoning behind the “donut hole in the first place? What kind of mind(s) comes up with such a concept? I just hope it’s not the same minds that want to destroy the Affordable Care Act, and along with it many of the inequities it tries to correct in an otherwise dysfunctional health care system often working in a manner irrespective of patient needs.

Isn’t it enough having to endure a debilitating or life threatening disease? Do most people in the US really think it’s moral to make those same people also suffer the indignity and humiliation of financial ruin just because they had the misfortune of getting sick?

Wouldn’t it be nice if everyone in the US thought of health care as a right, rather than a privilege provided only to those that can afford it?

It’s a beautiful day, and………

Edie, Treatments 2 Responses »

Mar 102012

I’m stuck lying around the house with a bad back [again]. (Fortunately there is a golf tournament to occupy me somewhat.) Don’t know what I did to deserve it, but I’ve found that often to be the case.

So since it’s been over a week since I’ve posted anything, I thought I’d take this opportunity to just ‘ramble’ about a few things that come to mind.

Edie is still on Velcade + Dex maintenance therapy. She switched to every other week, because every week was just getting to be too much, and also started subcutaneous injections of the Velcade instead of the standard infusion. While the research seems to indicate there is no difference between subcutaneous injections and infusions, I’m not so confident. Especially now that her counts have started to rise slightly. That of course could be the result of going to every other week therapy rather than every week.

She gets another blood test on Monday, and has an appointment with her oncologist and another Velcade injection on Tuesday, so we’ll know more after that, and possibly make adjustments.

As for me, I’m the same, except for the bad back that is. At least I hope that’s the case. I am still a little concerned about my IGA and IGM numbers being slightly abnormal, but I think I can wait for my next appointment in May to see if there is a trend developing.

I also received an email earlier in the week, from another MCL’r, that I feel the need to comment on. Based on some of the things this person mentioned, I thought they might have been taking some of my rantings about not rushing into treatment, or the cure being worse than the disease, a little too much to heart.

Fortunately reason prevailed, and whether it was my response, or some other factor, she decided to start treatment with Rituxan as a single agent.

While I am certainly an advocate of not rushing into treatment, I am not, nor have I ever advocated against conventional treatments. I have also never been shy about expressing my opposition to so called “alternative treatments” of any kind, as they are nothing more than a scam designed to separate you from your money.

But when the time comes, when symptoms become overwhelming [even before that in most cases], and especially when quality of life issues become a factor, there is no choice. Conventional therapy is the only way. The only thing being, I would try to start with the least toxic treatment first, and then go for the “big guns” as needed.

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.

It’s a delicate balancing act

Edie Comments Off

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.

At least the Velcade is working

Edie 2 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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