Sunday, January 22, 2012

No news is good news

I guess it’s time for a mid-month update. I continue to get my Vectibix every two weeks – my last treatment being last Tuesday. It’s not as tough to take as the old treatment except for the acne-like rash. The rash is pretty pervasive, covering just about everything from the top of my head to my waist. It’s dry and itchy and unsightly but on the whole, not a terrible price to pay to keep living.


Tomorrow, I leave for Florida for the week to visit my father. He is transitioning to an assisted living place after his fall last November. I hope to finish up a number of things related to the move, and have my fingers crossed that he will be able to settle in to the new place. For anyone who has done this with older relatives, I’m sure you know that it’s not easy. Anyway, I look forward to a few days of warmer weather.

In the meantime, we shipped Vicki back off to school and took in a Columbia basketball game when we dropped her off. She had a terrific first semester and is excited to be back. David is finishing up the Winter track season having not run a single race – a high ankle sprain side-lining him for the entire season. He goes to practice and the trainer and PT but not to the meets. Hopefully, he’ll get back out there in the Spring track season.

I hope you Northeasterners enjoyed the first snow yesterday since our snow-tober surprise! I’m not a huge fan of snow generally, but it does look pretty. And speaking of pretty, this post’s photo is of our Christmas Cactus which has been blooming like a manic in the front window! BB

Saturday, December 31, 2011

The Balance of the Year

I see that I haven’t blogged during the entire month of December. Just a sign of how busy it’s been. I’m sure that it has been a whirlwind for most of you as well. On the health front, I am doing fine – I have been doing treatments every two weeks and surviving them just fine. The plan is to continue this regimen for the foreseeable future. Dr. S told me last visit that he has one other patient who had a remarkably positive response like mine, to a drug that is very similar to Vectibix (a drug called Erbitux which he says is to Vectibix what Coke is to Pepsi). When I stopped to think of how many hundreds (thousands maybe?) of patients he has had, it struck me how fortunate I am.

As for the rest of December, I regret to say that I spent a lot of it flying back and forth to Florida because my father has been having a tough time. And when not there, it felt like I spent most of my time on the phone with doctors, social workers and Assisted Living directors trying to sort things out. My brother also made two trips. But, thankfully, between the two of us, we helped him get stabilized and moved into an ALF where, so far, he seems to be doing well. There are still quite a number of things to be resolved, but the train looks like it has gotten back on track.


On a happier note, my lovely daughter is home, having completed her first college semester! So she is 12.5% done with her degree! It’s great to have the four of us all here tripping over each other in the kitchen, stealing each others’ candy and playing with each others’ holiday gifts!

I hope you all had a great holiday and wish you the very best for 2012. May you all find the perfect balance of friends, family, work and play to make it a terrific year!! BB

Wednesday, November 30, 2011

The New Normal (aka Nevermind)

The Friday before Thanksgiving, Rob and I met with the surgeon about the procedure to put a stent in my liver. We had quite a long discussion and she showed us the scans from September and last week. It turns out that Vectibix has been so successful at reducing the tumors that she did not feel that it was advisable to do the procedure (even though it was already scheduled for the Monday before Thanksgiving.) While the “before” shot clearly showed three big, ugly tumors that prevented her from accessing the correct bile duct in September, the “after” shot showed not only remarkable tumor shrinkage but the duct obstruction was almost completely gone. As a result, she felt that she would not be able to find the exact spot to place the stent – and evidently they have to be positioned rather exactly. Further, stents don’t last forever. They can themselves become clogged and require intervention and, on the average, are normally only good for 6 to 9 months. So, after some discussion with Dr. S, we decided to forgo the stent at this time and just monitor the situation. Hopefully, in the future, if we can catch a blockage earlier, I can do a stent then.


This Tuesday, I went in for another round of Vectibix, which went without a hitch. Curiously, my billies only fell from 2.2 to 1.8 mg/dl. In fact, there are a number of liver readings still out of whack but it doesn’t seem like there’s anything to do about it at this time. Maybe I will never make it back to “normal” but I suppose it doesn’t matter as long as I have no complications or turn yellow. As a result, I am declaring this fall’s little crisis over – this is the new normal – and I’m back to doing, you know, whatever it was I was doing before my “yellow” period. I’m going to just go on with life with only half an eye fixed on my blood work. And to prove it, here’s a photo of me waiting at a cafĂ© on 53rd street while they mix my meds!

I hope you all had a great Thanksgiving! I’m sure thankful to have had one – and what a fine meal it was! BB

Thursday, November 17, 2011

Nevermi....well, not quite yet....

Robbie and I saw the onc yesterday and got the results of the CT scan I had last Friday. Dr. S was very upbeat, saying that the scan looks very, very good and that my bilirubin level is now down to 2! I was hoping for a 1 (and an all-clear sign), but 2 sure is better than the 32 from last month. He said that the scan shows an area that is still blocked and that he forwarded the results to the surgeons for evaluation. They now say that the procedure which was technically impossible last month is do-able because the tumor shrinkage that Vectibix has provided gives them room to work. So, Dr. S set up an appointment for me to see the surgeon on Friday.


The goal of the surgery would be to insert a stent into my liver to hold open the bile duct. The procedure is “minimally invasive”, using some kind of needle to insert the stent rather than making a big incision. That’s sounds good. Dr. S did not go over the procedure in detail, however, as the surgeon – actually a doctor of “Interventional Radiology” - will explain it tomorrow. Also, it seems that Dr. S feels that the Vectibix alone might actually get me to an all-clear but, in order to ward off problems in the future, I should have the stent inserted now, while there’s room to get it done. Tomorrow I’ll get the full picture of what it’s all about and – I assume – will set up an appointment sometime soon to have it done. In any event, we are very close to getting clear and very optimistic that this will soon all be behind us.

So, it was all good news yesterday and I polished it off with another dose of the hamster juice. I must say that I like the fact that Vectibix is pretty easy on the digestive system. These last few visits, Rob and I have gone out for dinner in the neighborhood after treatment. We’ve hit the tapas place, a new sushi bar and, last night, Chinese (I can now recommend the Taiwanese Mei Fun at “Ginger” on East 55th). Makes the long day of hanging around the clinic seem more worth it!

Saturday, November 5, 2011

Staying Moist, Getting Clear

We met with the onc last Tuesday for the usual check up and chemo and the good news is that my billies have trailed down a bit more to about 6 mg/dl. A very good sign but still not quite there. I am hoping that the dose I got Tuesday will be enough to push me clear and I will finally be done with this problem. An added benefit of Vectibix, though, is that it’s much milder on the body than the other things I’ve taken. No nausea or digestive issues – just the rash. And I have found that the antibiotics and the moisturizing do a pretty good job of keeping that at bay. I moisturize now more than a Swedish model…it’s part of my daily beauty regiment!!


Anyway, that’s all good and I hope it will all pay off with an “all clear” in two weeks. This past weekend, however, I did have a physical breakdown where my liver pain flared up as bad as it had ever been and I spent most of the day Monday exhausted in bed. I was worried that it was a sign that the Vectibix had stopped working. But Dr. S thinks that I have an “intratumoral bleed” which is to say that somehow I mashed one of the tumors and it’s acting up. He told me that the pain should subside in 3 to 5 days and that I should not curtail my physical activity – I thought perhaps I did it shoveling some snow last weekend or building a fire when we had no power. He said I could have done it then or by sneezing or rolling over in bed or any of a million other ways. So, I should stay the course on trying to push myself physically. And, I think he was right – the pain has dropped off significantly in the last couple of days.

So, we are still on course…just need to be patient (never my strong suit)…and keep eating, moving about and moisturizing! Hope you have all weathered the big October snows (if you got hit). We had a fair amount of tree damage but nothing major and even got our power back after just one day – much luckier than many friends and neighbors who have only come back online in the last day or so. Enjoy the weekend!

Wednesday, October 19, 2011

More Good Progress

Had another dose of Chinese hamster juice on Monday and another blood test.  My billies are down to 9!!.....8 more points and I will be clear!!!  Also, on the positive side of the ledger: I put on 4 pounds last week, my strength is better, my mental clarity has come back, my energy is much better, and my cancer pain has dropped so much that I'm not even taking my oxycodone anymore!  All excellent signs that I am going to get through this.  Not out of the woods yet, but I can see the light coming through the trees!!

So, I'm just gonna stick to my plan of rest, germophobia and eating like a Viking at a Smorgasbord!!  Thanks again to everyone for your good wishes.BB

Thursday, October 13, 2011

All Hail the Chinese Hamster

I have some good news to report. My first dose of Vectibix has produced some excellent results! I am not out of the woods and frankly I have been whip-sawed so many times this past month by things I thought would work and then didn’t, that I am not yet able to say I know that I will get clear. But I am cautiously optimistic that – with another dose scheduled for the 17th and adherence to my other precautions – I may get there in a few weeks.


Here’s how “progress” is measured: My jaundice is the result of tumors pressing on the bile ducts in my liver. The severity of the obstruction is measured by the level of bilirubin in the blood. A normal bilirubin level is between 0 and 1 mg/dl. If it gets elevated, say to a 2 or a 3, a person will likely jaundice and issues arise, most importantly around getting sepses. When I first jaundiced in early September, my billies were at 8 – a level the doctors were very concerned about. My weekly readings since then were 13, 24 and 32. At 32, the doc switched me to the Vectibix and told me to prepare my family for a possible negative outcome.

This Tuesday, I went in for a consultation and blood work. I felt better and had a lot more energy over the weekend and so, I felt like I’d get a good result. To my great joy, my billies have dropped to 12!! Vectibix not only broke my horrific trend line up Jaundice Mountain but has made a major dent in getting me back to a safe landing. Robbie and I are very encouraged by this initial reaction and I hold out hope that it’s not just a one-time thing. So, I am not counting this as a home run yet, but the ball’s trajectory sure looks good!

As an aside, I did a little research into what Vectibix is. It is a monoclonal antibody, which means that it is engineered to only attack cancer cells. Most chemotherapy drugs attack fast growing cells generally, and since the fast growing/replacing cells of the body include hair, skin, digestive tract and the like, they have side effects like hair loss, rashes, mouth sores, nausea, constipation, etc. By comparison, Vectibix is easier on the side effects, other than the rash. Vectibix attacks the “epidermal growth factor receptors” (skin thingamajiggies?) of cancer so I guess that’s what produces the acne-like rash. But it’s not always easy for me to understand some of the medical jargon they put in the fine print – perhaps I can get my friend Ellen with her PhD in Pharmo-smartocology to explain it to me!

Notably, Vectibix is “produced” in – get this – Chinese Hamster ovaries! How they zeroed in on the Chinese Hamster, I will never know. But I suppose that in China – where I have heard that hamster ovaries are traditionally served with warm brie and a glass of chardonnay (I am told they have a succulent, slightly tangy flavor) – the dish must be known for it’s cancer fighting benefits. Of course, I am taking the Amgen-designed, weapons grade derivative which is a lot more concentrated but this blend of traditional and advanced bio-engineering seems to be working. So, all Hail the Chinese Hamster!! If they get me out of this mess, maybe I could get one as a pet – it might be good karma!