Wednesday, May 29, 2013

I finally had a bronchoscope on Friday. The procedure was done in the new U of C Center for Care & Discovery which opened three months ago. We arrived at the new building and proceeded to the 7th floor reception area appropriately named the “Sky Lobby”. OMG – it’s the size of a football field and all glass with a view that overlooks the city. The area is broken into different areas by walls of glass so you feel like you’re in a smaller area but can see the view no matter where you sit. Each area is broken up into sections with chairs, sofas and lamps. They have a Starbucks and believe it or not a Wolfgang Pucks!! You feel like you’re in an upscale hotel complete with a grand piano. Once we checked in with the receptionist we were handed a buzzer like you get at a restaurant. When the buzzer goes off you go back to the receptionist and are assigned a personal escort who brings you down to pre-op. Mark was able to come down while I was checked into my assigned area and they took vitals and hooked up my IV. Once they were ready for me I was on my way to the procedure suite and Mark headed back to the Sky Lobby with his buzzer to wait until it buzzed again for him to be escorted back down to post-op.

Compared to the old procedure suites (notice they no longer call them operating rooms) these are amazing. They are four times bigger and much brighter. There are about six flat screen monitors all around the room to watch the patient and record the procedure.

I really like the doctor who did the procedure. Easy to talk to and understand. I jokingly asked him if he ever had a bronchoscope and he proceeded to tell me that he actually gave himself one to see what it was like so he understood what the patients were talking about when they described it to him. He did say he stopped short and only went up to his vocal cords since he was alone when he did it.

Well as expected the anesthesia they gave me didn’t work too well. The nurse gave it to me and asked if I felt anything. My response was no. She gave me more and asked again if I felt anything and again I said no but added "give me lots of drugs!!!!" They thought that was funny and gave me a little more. Still not much happening but they started. To tell you the truth they had numbed the nasal passage and throat so all I felt was pressure but no pain. It just felt strange. In fact I told the doctor it itched. I was able to watch it on one of the overhead screens when the docs head wasn’t in the way. At one point the nurse mentioned I was trying to see the screen but his head was in the way and he moved and knocked his head into the screen. Seemed funnier then…….

The only uncomfortable part was when they inserted 150ml of water into the lung and he used what looked like a tiny bottle brush to scrape cells from the interior of the lung. They then suctioned it up so they can grow it and check for viral, bacterial or fungal infections. I felt a choking sensation and had to cough which they warned would happen. Unfortunately they were only able to suck up 50ml of fluid and the balance will hang around for about a week before it’s gone. Until then I have coughing/chocking jags every so often.

I was able to talk to the doctor right after the procedure and he said everything looked normal. No masses, fluid, etc. It’s going to take about a week to grow the cells they removed so we won’t know anything until next week.

Post-Op

All and all it wasn’t a bad experience. The U of C team was great and took good care of me. The weekend was spent resting.

Next up is chemo this today which I hope goes smoothly (LOL).

Besides that did I mention that I have another lump on my head where the last lesion was three years ago? If you remember I had radiation which destroyed the cancer and only left evidence of medical treatment. My doctor thinks it may be from the radiation but it seems funny it would just pop up now. Anyway I have a Brain MRI scheduled for June 7th. There’s always something happening…..

Until I have more to report….

Keep on Dancin”

Wednesday, May 8, 2013

Chuckle of the Week........

If you read my posting earlier this week you know that my bronchoscope procedure was canceled due to "not enough workers".  I received a call yesterday afternoon from the hospital that I needed to share with you.  The names have been changed to protect the innocent.

UCMC:  I'm calling to reschedule your colonoscopy.

ME:   aaaaaaaa......What???!!!!

UCMC:  I'm calling to reschedule your colonoscopy procedure that was canceled earlier this week.

ME:  I think you have the wrong end!

UCMC:   (shuffling of papers)  Oh,  ummm   (embarrassed)  I'll have to call you back.....

ME:   Have a nice evening.


Really, I couldn't make this stuff up if I tried.

Keep on Dancin'

Monday, May 6, 2013

The saga continues.....   I just can't believe I'm the only one who encounters issue after issue when dealing with the hospital.  So here's the "rest of the story".......

Pulmonary doctors' office called me to tell me that the appointment I had scheduled for May 8th was "inappropriate".  So thinking she meant that I needed an earlier appointment I said yes and she proceeds to tell me that there were three doctors I could see and she was to give me the earliest appointment that one of them had.  She then tells me that she could schedule me for May 15th.   Wait a minute.... I was trying to move up my "inappropriate" appointment and she proceeds to give me an appointment for a week later.  I think I'm missing something here.  So I mention to the scheduler that the reason to change to appointment was to get one earlier then May 8 and she again tells me that that appointment was "inappropriate".  OK - I had to ask what she meant by "inappropriate" where she informed me that the doctor I currently was scheduled with was not able to perform broncoscopes.  WHOA.....  who said anything about a broncoscope?????    I guess I missed that part.  I again told her I needed an earlier appointment then May 8 because my Oncologist wanted me to see the doctor before my next chemo infusion which was May 8.  Long story short I was scheduled to see the Pulmonary Doctor April 30.

So went to see the specialist last week and I do say I really like him.  Seems practical in his approach (so far).  He explained that he felt doing a broncoscope is far less invasive then a traditional biopsy and scheduled me to have it May 6 (which by the way is today).  He went on to say that he didn't feel by looking at my CT scan that I should stop chemo and he called my Oncologist right away to let he know.  He did share with me that although he would do the scope it (or even a biopsy) would not tell them if the chemo was effecting my lungs.  In his opinion it was not,  but he couldn't be certain (so why am I having it???).   I did mention I went from a bad head/chest cold that was hanging around for several months right into allergy season.  He gave me a nasal spray and I must say that I have seen a big difference in my breathing.  No more stuffy nose.

So fast forward to last Friday afternoon at 4:00PM and I get a call from the hospital.  Seems they have to cancel my procedure scheduled for today due to "not enough workers".  HUH??????  World Class Hospital my @$$!!!!   You have to be kidding me.  So they scheduled me for May 8th - NOT!  There must be something about May 8 because they seem to want me to spend all day at the hospital.   I have chemo Wednesday and there is no way I'm going to get there at 7AM and wait until 2:30 for chemo and finally leave at 6:00PM.  Not going to happen.  So now I wait for them to call me back and let me know when I've been rescheduled.  At this rate by the time they figure it out we will be out of allergy season and everything will be back to normal.

Is it a wonder I get all bent out of shape when dealing with all of this?  I'll keep you informed when I get more news.

Keep on Dancin"

Thursday, April 25, 2013

Wow - it's hard to believe April is almost over.  What a crazy month. 

Sorry for the late update but things have been hectic and I've been out of town.  I had a CT scan on April 9 showing STABLE.  It's funny where before I would have been frustrated with the word stable in regards to anything else; it actually has become a favorite word in my world.  Don't get me wrong, I'd love to hear improved, but stable will work.

Same old BS when going for the CT scan.  You would think that after three years and many, many scans that they would get things right especially at a world class hospital.  But no I still had to argue with the tech who insisted that my orders state I needed to take the oral contrast.  It wouldn't be so bad but I have made a habit of checking the day before to make sure the orders are correct only to walk in at 6:45AM and be told the opposite.  I have to give the tech credit though in this case, after telling him to scan down the order and look at the notes he did come back to me with a printed copy to show me that indeed it said NO ORAL CONTRAST,  Seems the Radiologist can't read.  But lets focus on the results - STABLE.  That's what gets me through.

Wednesday was a doctor appointment and chemo.  After a while you can tell when something is going on and as usual my radar was working.  First saw the Fellow who asked a bunch of questions (why isn't all this in the computer so they stop asking the same questions every three weeks???   It's not like it's been a year since I was last seen).  I got a lecture on my non-healthy eating habits.  You would think she would understand that after working 9+ hours a day I just don't feel like cooking when I get home.  Then the nurse came in and I could usually read her like a book.  I knew something was brewing.  Sure enough my doctor came in and said she couldn't give me any more chemo until I saw a Pulmonary Specialist because my lungs showed having opacities (cloudiness).  I almost hit the roof thinking that I have been sitting and waiting all this time only to be told I wouldn't have a treatment.  Luckily she clarified and said I could have the treatment that day but no more until she  (covered her butt) talked to a Lung Specialist.   So of course the next open appointment with a spcialist is May 8 at 8:00AM (three weeks later).  Problem is that I have chemo that day at 2:30 and there was no way I'm going to be at the hospital at 8AM and wait around until 2:30 for chemo.  I usually don't get out of chemo until 6PM so that's 10 hours of sitting around.  Supposedly they are trying to get the appointment for an earlier date but I have half a mind to start calling on  my own to see if anything is available.  They have over 15 Pulmonary Specialist.  You would think one would be available!   You could see my frustration!  I really believe part of the problem is that most of my doctors patients are on disability and have all the free time in the world.  They forget that those who work really need to be at work and not sitting at a hospital wasting time!   Well, hopefully we can get this resolved in the next few days.

Through all of this I still have managed to keep my blood pressure in check:

Otherwise I feel great except for a slight head cold and cough.   I just can't wait for the warmer weather so I'm not so cold all the time.

I'll try to update you all in a more timely manner.  Until then keep a smile and your face and a positive attitude!

Wearing my waterproof dancin' shoes!

Keep on Dancin"

Tuesday, April 2, 2013

Sorry I have been out of touch for the past several weeks but there really hasn't been much to write about (which I guess is a good thing). 

Chemo last week was pretty typical.   I did get a new nurse who learned a valuable lesson from our time together.  Although I have tried not to interfere with how they insert the IV needle, let's face it after three years I'm pretty much aware of what's going to work and what's not.  So when he laid down the IV kit and I noticed he had a blue (22 gauge) instead of a yellow (24 gauge).  Experience tells me that due to the fact that my veins are small that a yellow works much better then a blue because they are able to advance it into my vein without it breaking through.  So I mentioned to him that I usually have a 24g but it was his call what to use (see I'm getting better at letting them do their jobs).  He decided to use the 22g and proceeded to insert it and advance it right through my vein.  Second try was with a 24g with no problem except now I have a huge black and blue mark where I bled out under the skin.   To his credit when all was said and done he did tell me he should have listened to me since I knew better having gone through this so many times.   Lesson Learned in this scenario is as a patient speak up and be a part of the team instead of a bystander.  As a health care professional listen to your patients as they have valuable information to share.

The only other thing on the horizon is a CT Scan scheduled for April 16.  It will be 12 weeks since my last and I'm feeling a little nervous.  I know how quickly things could change and how imperative it is to catch it quickly.  Fingers crossed for good results.  As I always say when I'm asked how I'm doing "you're only as good as your last CT Scan".  Not being negative but stating a fact.

Otherwise I'm just tired and cold as usual.  I can't seem to shake this head cold and stomach virus that's been going around.

Waiting until I can put on my dancin' flip flops.

Keep on Dancin"

Friday, March 8, 2013

Wednesday was my 19th chemo treatment with the trial drug T DM-1.  Hard to believe it's been a year since I started the trial.  As you may have seen from my last post this drug was finally approved for limited use (whatever that means) by the FDA after many years of testing and fighting.  It's been good to me so far ( but as you all know I'm cautiously optimistic ) and I hope others will benefit from this drug.  It's a good feeling to think that I am a "pioneer" (or guinea pig as I like to say) who's participation in this trial will help those in the future to fight this battle. 

I saw the doctor before my treatment and she advised me that even thought this therapy has been approved, the drug company has chosen me to stay on trial and continue to gather information on my tolerance to it and any side effects as well as results.  This is a good thing since the trial covers the cost of the chemo (rumor is that the cost is close to $10,000 per treatment) and testing (CT Scans, ECHO, etc).  Although I have good insurance I would hate to think I would have to fight with BCBS for them to cover the cost of the treatments.  So I continue my quest to make history....

All and all everything is good.  Just very tired and constantly cold.

Thanks for all your support!

Keep on Dancin'

Friday, February 22, 2013

Breaking News.........

F.D.A. Approves Breast Cancer Drug  
By ANDREW POLLACK


The Food and Drug Administration on Friday approved a new type of drug that combines the widely used breast cancer medicine Herceptin with a powerful toxin to more effectively kill cancer cells while potentially reducing side effects.

The drug, which will be called Kadcyla but was known as T-DM1 during its development, extended the median survival of women with advanced breast cancer by nearly half a year in a clinical trial.

Genentech, which developed the drug, said it would cost about $9,800 a month, or $94,000 for a typical course of treatment. That is about twice the price of Herceptin itself, which is also made by Genentech, but it is similar to the price of some other new cancer drugs. It is approved for patients with HER2-positive breast cancer, about 20 percent of cases.
Kadcyla is one of the first successful examples of a new class of drug that link toxins to proteins known as monoclonal antibodies. The antibodies latch onto tumors and deliver the toxic payload. Because the toxin is not activated until it reaches the tumor, some side effects are avoided.

Such medicines, known as antibody-drug conjugates, are a hot area for cancer drug developers, with around two dozen such drugs in clinical trials. Another antibody-drug conjugate, Adcetris, developed by Seattle Genetics, was approved in 2011 as a treatment for two rare types of lymphoma.

The linker and toxin used in Kadcyla was developed by ImmunoGen, based in Waltham, Mass., which will receive royalties on sales of the drug. This is the first approved product for ImmunoGen, which has been working on antibody-drug conjugates for three decades.

The main clinical trial leading to approval of Kadcyla involved 991 patients with metastatic breast cancer that was worsening despite treatment with Herceptin and a taxane chemotherapy drug, such as paclitaxel. Half the women were given infusions of Kadcyla and the other half took two pills now commonly used for such patients: Tykerb, also known as lapatinib, and Xeloda, also known as capecitabine.

The patients getting Kadcyla lived a median of 30.9 months, compared with 25.1 months for those getting the two pills. The median time before the disease worsened, a measure known as progression-free survival, was 9.6 months for those getting Kadcyla, compared with 6.4 months for those getting the other drugs.

While having greater efficacy, Kadcyla also had fewer side effects. About 43 percent of patients on Kadcyla had serious side effects compared with 59 percent for those getting the two pills.



Still, the label of Kadcyla has a warning saying the drug can cause liver toxicity, heart toxicity and death. It also can cause serious birth defects or fetal death, so women of childbearing age taking the drug are urged to use contraception.

Herceptin, also known as trastuzumab, binds to a protein on the surface of breast cancer cells called HER2. Since Kadcyla incorporates Herceptin, it too is approved only for the roughly 20 percent of breast cancer cases with an overabundance of HER2.

Kadcyla’s approval is for use after a patient has already failed to respond to Herceptin and a taxane. But Roche, the Swiss company that owns Genentech, is already testing it for use as an initial treatment for metastatic cancer. It is also testing it in combination with Perjeta, another of its drugs for HER2-positive breast cancer, which was approved last June.



Roche executives say they hope that Kadcyla, along with Perjeta, will make Herceptin somewhat obsolete by the time it could face competition from cheaper biosimilars, which are similar to generics. Roche says the United States patent on Herceptin expires in 2019.

Herceptin had global sales of 5.9 billion Swiss francs ($6.3 billion at current exchange rates) in 2012. It was the world’s best-selling drug used only for cancer in 2012.

Genentech tried to win approval for T-DM1 in 2010 as a treatment for breast cancer patients who had run out of options, based on a small trial without a control group. But the F.D.A. turned down the application, angering some patients and patient advocates.


Dancin' the Happy Dance - Keep on Dancin"