Sharing my story

Fall is here!

 

 

 

 

 

 

 

 

 

 

Hello –

Hope everyone is well – been meaning to update this blog but something always came up LOL.   My maintenance treatment with the Rituxin was on Oct 24th  and went well.  The Oncologist seemed pleased with all the lab results as well as seeing some more weight loss on my end.  Activity level has increased back to normal with almost daily walks (4 miles) down and around the beach followed by weight training 4-5x/week, some done at home, others at the gym.  Weight loss is down about 25 pounds since my all time high back at the end of last year, but much of that was water weight from the Prednisone (Steroid) that is both a wonder drug and a bloater.  Been eating fairly clean during the week but like everyone fall off the wagon on most weekends.

 

Still have not put up the new website, so I’ll recap here for those who had asked.  The last few months we ended up outfitting the home with a nice gym system – full squat rack with/Smith Machine, Lat Pulldown w/200lb stack as well as about 500 pounds in free weights, gym flooring, and wall mirrors.  The rack/weights came from a nice guy in Magnolia (craigslist) who hardly used it.  The dumbbells were harder to find and more expensive than you would imagine – ended up getting pairs of 10’s through 100’s (in 10 pound increments) at a place in Lynnwood, WA – who matched an online quote.  They are urethane, which last much longer than rubber dumbbells and most importantly do not SMELL.   It’s nice to have all this equipment here and I’ve been using it almost daily in some shape or form.

 

 

 

 

 

 

 

 

 

 

 

 

 

Last weekend Dan and I flew down to Phoenix to watch our dog, Duke, compete at the GDCA – Great Dane Nationals.  It was a real thrill to be at such a big venue and watch our boy compete with the best.   He did very well, handled by our friend and breeder, Kim.   Together they brought home:   Best In Class (15-18 month/dog), Best Junior Dog and Best Bred by Exhibitor.   Exciting and nerve wracking all at the same time.  Here are some pics:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Looking forward to some time off for Thanksgiving weekend with my family.  Take care!

 

Chris 🙂

PS:  Took the profile picture above today while I was driving around.  Hadn’t shaved my goatee off in a long time and figured today was the day 🙂

Andy Whitfield passes at age 39

Hello –

 

I had written about Andy Whitfield several months ago on this blog and was sad to see he had passed away today.    🙁

 

Chris

 

——-

 

 

 

 

 

 

 

 

 

 

 

Andy Whitfield Dead: ‘Spartacus’ Star Dies Of Non-Hodgkin Lymphoma

By ANDREW DALTON   09/11/11 10:30 PM ET   AP

LOS ANGELES — Andy Whitfield, who played the title role in the hit cable series “Spartacus: Blood and Sand,” has died at age 39, according to representatives and family.

Whitfield died Sunday in Sydney, Australia, 18 months after he was diagnosed with non-Hodgkin lymphoma, manager Sam Maydew told the Associated Press.

“On a beautiful sunny Sydney spring morning, surrounded by his family, in the arms of his loving wife, our beautiful young warrior Andy Whitfield lost his 18 month battle with lymphoma cancer,” Whitfield’s wife Vashti said in a statement. “He passed peacefully surrounded by love. Thank you to all his fans whose love and support have help carry him to this point. He will be remembered as the inspiring, courageous and gentle man, father and husband he was.”

Andy Whitfield – who was born in Wales and moved to Australia in 1999 – was a virtual unknown when he was cast as the legendary Thracian slave in “Spartacus,” a role made famous by Kirk Douglas in the 1960 Stanley Kubrick film.

The series proved a breakout hit for the Starz network and made waves with its graphic violence and sexuality.

Whitfield appeared in all 13 episodes of the first season that aired in 2010, and was preparing to shoot the second when he was diagnosed with cancer.

While waiting for Whitfield’s treatment and expected recovery, the network produced a six-part prequel, “Spartacus: Gods of the Arena,” that aired earlier this year with only a brief voiceover from the actor.

But in January after Whitfield’s condition grew worse, the network announced that another Australian actor, Liam McIntyre, would take over the role.

“We are deeply saddened by the loss of our dear friend and colleague, Andy Whitfield,” Starz President and CEO Chris Albrecht said in a statement Sunday night. “We were fortunate to have worked with Andy in `Spartacus’ and came to know that the man who played a champion on-screen was also a champion in his own life.”

Whitfield’s previous credits included appearances on the Australian TV shows “Packed to the Rafters” and “McLeod’s Daughters

Almost Labor Day

Hello!

 

This Summer came and went so quickly – back to school for the kids in a few days.   The last few months have been spent getting caught up on work and doing some traveling and renovations to the home.  Bathroom on the main floor was renovated and a bar was added – looks really nice.  We ended up replacing the windows and door sliders on the deck as well – makes it so easy to open and close.  We did get some ribbing for our urinal we put in the bathroom, but it looks nice and although it doesnt thrill the ladies, the guys love it ha.  The best part we as we added A/C to  house and what a difference that has made.  So much easier to work from home when you are not sweating.  Our home faces west towards the water and once the sun get’s overhead it is relentless.  The new windows/sliders have a light tint that also has aided in keeping the place cool.  

 

Last month we met mom in Denmark and took a Baltic cruise aboard the Norwegian Sun and visited Estonia, Berlin, Helsinki, Stockholm and St Petersberg.  It was the first time we’d been back to Germany in 20 years.  Prior to that we had spent a few days with friends in NY and saw my cousin perform on Broadway (Sister Act) and also Book of Mormon which swept the Tony Awards this year.  Both were very funny.

 

Had a maintenance treatment on Monday which went well.  As usual I arrived early (8am) for blood work and as seen by the doctor at 9:30am.  She seemed pleased with how I’m doing and the numbers that came back from the blood test.  Infusion started at about 10am and I was out cold from the Benadryl Drip (they give this to me before the Rituxin).  When I woke up at 11, my buddy Mike was there and caught me by suprise.  I found a pic he had taken of me with my phone catching flies (mouth open) while I was sleeping..nice work ha.   The IV ended around 2pm and he drove me home – next treatment is Oct 24.  This will go on every 8 weeks for the next 13 months.  Not sure if I had shared this article before, but it looks to be positive.  Rituxin is the biological agent I”ve been getting and the article deals with promising results by participating in the maintenance treatment that I’m currently doing.   Obviously they stress in the article that what I have is an “incurable disease” but hopefully that will change in my lifetime.

 

I have yet to get that other website up and live, but once I do I will share the link. 

 

Take Care!

 

Chris xo

 

————-

ASCO 2009: Prolonged Rituximab Extends Remission in Follicular Lymphoma

Roxanne Nelson

June 16, 2009 (Orlando, Florida) — Rituximab (Rituxan) is widely used in the treatment of follicular lymphoma, and data from clinical trials show that the addition of rituximab to chemotherapy significantly improves outcomes, as previously reported by Medscape Oncology. Now results show that rituximab can have a profound effect on the disease, significantly extending disease remission in individuals with advanced-stage follicular lymphoma.

The long-term results come from a study that was initiated in 1998, published in 2004 (Blood 2004;103:4416-4423), and revisited in a presentation here at the American Society of Clinical Oncology 45th Annual Meeting. Lead author Michele Ghielmini, MD, from the Oncology Institute of Southern Switzerland in Bellinzona, explained that the team followed the surviving patients from this trial to investigate the proportion of long-term responders and the characteristics predicting a long-term response to rituximab.

They found that the benefit from rituximab is durable, said Jonathan Friedberg, MD, chief of hematology at the James P Wilmot Cancer Center, University of Rochester in New York. Follow-up is now 9.4 years, and 25% of those patients are still in remission at 8 years, he noted. In 1 subgroup of patients, nearly half were still in remission after 8 years.

In contemplating these results, Dr. Friedberg urged the audience to “keep in mind that follicular lymphoma is considered to be an incurable disease.”

But perhaps we are now giving some of these patients a chance toward a cure.

Speaking at a Highlights of the Day session, Dr. Friedberg said that this abstract was one of the most interesting of the whole meeting. “How can 4 additional doses given in the year after induction have such a profound effect 8 years later in a disease that is considered to be incurable?” he wondered.

“The rituximab era is only 12 years old and some of the trials have follow-up of only 5 years,” he said. “But perhaps we are now giving some of these patients a chance toward a cure.”

Long-Term Response Rates Evaluated

The original study was conducted in patients with newly diagnosed or refractory/relapsed follicular lymphoma. “The trial was for both chemotherapy-naïve and pretreated patients, and they received what was then the standard schedule for rituximab,” explained Dr. Ghielmini.

Of the 202 patients enrolled in the study, 151 were randomized. The median age of the patients was 57 years, 85% of the cohort had stage III or IV disease, 50% had bone marrow involvement, and two thirds had been previously treated with chemotherapy. All participants received rituximab at the standard dose of 375 mg/m2 weekly for 4 weeks, and were re-evaluated at week 12. Patients who responded to the therapy or who had stable disease were then randomized to either no further treatment, which was standard at that time (observation group; n = 78), or to 4 additional doses of rituximab given at 2-month intervals (extended-rituximab group; n = 73).

At a median follow-up of 8.9 years, among surviving patients who had been followed for at least 5 years, the median event-free survival (time to progression, relapse, second tumor, or death) was 13 months in the observation group and 24 months in the extended-rituximab group (P = .0012).

“I have been asked many times if these patients were really in need of further treatment, and we don’t really know because it was not mandatory in the protocol that patients be symptomatic,” said Dr. Ghielmini. “But two thirds of the patients were relapsing after chemotherapy, so in the majority of cases, these were patients who were in the need of treatment.”

Prolonged Schedule the Only Significant Prognostic Factor

The researchers also looked at prognostic factors that had been found to be significant in previous analyses. In univariate analysis, disease stage was important, especially for those who received the prolonged treatment. Patients with stage III disease did better than those with stage IV disease. The same held true for patients who were chemotherapy-naive and for those with a favorable Fc-receptor phenotype.

But in multivariate analysis at a median follow-up of 9.4 years, the only significant prognostic factor was the extended schedule (hazard ratio, 0.6; P = .007).

In a subanalysis, the researchers looked at the effect of response. “We hypothesized that patients who had stable disease following induction could take advantage of a longer treatment time with rituximab,” explained Dr. Ghielmini. “So we randomized patients with stable disease, but they did not gain very much from the prolonged rituximab treatment.”

Improved Survival in Responders and Chemotherapy-Naïve Patients

Instead, patients who had responded to induction had an important advantage. Among responding patients, the observation group experienced a 1 year remission, whereas those in the extended-rituximab group experienced a remission period of approximately 3 years. At 8 years, 35% of responders were still in remission.

Another subanalysis was conducted with a small group of chemotherapy-naïve patients (n = 38). After 8 years, 45% of these patients remained in remission, and this is the population targeted for the next clinical trial. “This is where we ask: Do they really need chemotherapy in the first line? We plan to offer patients randomization between single-agent rituximab [and] rituximab postchemotherapy,” he said.

The overall survival curve showed a difference between the 2 groups, even though it was not significant. But when the data from this trial were integrated with those from 3 other studies, the meta-analysis showed that there was an increase in overall survival with maintenance rituximab, compared with no maintenance, Dr. Ghielmini noted.

Most of the observed toxicity was acute or subacute, and the incidence of second malignancies was similar in the 2 groups: 12 patients in the observation group and 10 in the extended-rituximab group.

The data from this trial showed that prolonging treatment with rituximab improves outcomes and, on the basis of these results, the researchers hypothesized that extending treatment for an even longer period of time would have an even greater benefit. “We are running a similar trial, but this time we have randomized only the responders,” said Dr. Ghielmini. “They were randomized to 1 year of maintenance therapy vs 5 years of maintenance; so far we have recruited 270 patients.”

However, it is still too early to present any results, he added.

Questions Remain

In a discussion of this paper, Ian W. Flinn, MD, PhD, director of Hematologic Malignancies Research at the Sarah Cannon Research Institute in Nashville, Tennessee, noted that in the 12 years since the introduction of rituximab, it has been shown to improve response rates in low-grade lymphoma when combined with chemotherapy.

“Not only does it improve response rates when added to chemotherapy, it improves progression-free survival and duration of responses,” said Dr. Flinn. “In some series, in some studies, and in some contexts, it has also improved overall survival.”

But like many studies, this paper raises more questions than can be answered from 1 database, he pointed out.

“Is rituximab useful after rituximab and chemotherapy? That question is not answered in the current dataset,” said Dr. Flinn. “The Swiss group is going to go on to see how long rituximab should be given after induction with chemotherapy or with rituximab.”

In addition, the optimal schedule for rituximab remains unknown. “In this study, the drug was given every 2 months for a total of 4 doses; some have used it every 3 months, and others have used 4 doses every 6 months,” he said. “These are still unanswered questions.”

The study was partially supported by Roche. Dr. Ghielmini reports receiving honoraria from Roche. Dr. Flinn reports receiving research support from Genentech. Dr. Friedberg reports acting as an advisor or consultant to Astellas, Eli Lilly, and Genentech, and receiving research funding from Cephalon, Millennium, and Rigel.

American Society of Clinical Oncology (ASCO) 45th Annual Meeting: Abstract 8512. Presented May 30, 2009

I’m Back :)

Hello!

Sorry for the gap in posts – I’ve been busy getting back into my routine and was probably trying to forget all of this LOL.   Maintenance Treatment #2 was this past Monday (June 27) morning  and went well.  My regular nurse Debbie was there but her area was totally full in the infusion suite so I ended up in a nearby area with a different gal.  After the Benadry drip I was out for 4 hours and barely remember any of it ha.   I was out by 2pm and heading back home.  My rebound from this treatment (Rituxin) has been quick and not at all as bad as when they were giving me 5 drugs.   Next treatment is on Aug 29 and will continue on this cycle of every 8 weeks for the next 14 months.  My Hair has come back which is nice.  I think I’ll let it grow out for a bit.  Weight has dropped since I’m off the steroid Prednisone.   Here’s a pic I took a few min ago:

Alot has happened, but rather than talk on this forum (since it’s all unrelated) – Dan has set up a new website which I will write about day to day things, etc.  I’ve been getting tons of spam on this blog which is annoying.   More soon – will send new site/link via an email.  

Take care

Chris xo

PS: This site will remain up and updated after my treatments or any medical updates

ER

Today started out fine in all aspects and ended rather shitty.  Figured this is the best way to fill everyone in without a mass email.   Last night I was having pain in my left forearm and had this gut feeling it was a bloodclot.  I figured if it wasn’t better by today I would call my doctor and get in.   All day today there was this dull ache/pain and a definite area where I could feel a bump (about the size of a marble).  Called in and they told me there was an opening at 2:15 to be seen.   The doctor and I were on the same page and sent me over to the vascular clinic to get an ultrasound.  Sure enough it was superficial clot in the forearm, BUT what they were worried about was a DVT (Deep Vein Thrombosis) in the underarm.  Ughh.  Not good. Over the past 6 years it has been an issue with me:  2 in my left calf, 1 in my wrist and now one in my foram/underarm.  The danger of course is if they dislodge and go to your lungs – where they have the potential to kill you.  In fact it is thought this was what my Aunt Claire died from at age 49.  Only once did one of the clots travel to my lungs (Feb 2008) and at that time they hospitalized me for 2 days and put me on blood thinner for life.    After the diagnosis today they walked  me to the ER where they did a battery of tests and bloodwork and gave me a shot of fast acting blood thinner (Lovenox).  Since I was not having any trouble breathing or otherwise they discharged me after 5 hours with instructions to take Lovenox shots 2x/day for the next 5 days and get my blood tested on Monday to see if it had thinned out.  My INR was 1.3  (thick) where it should be between 2.5 and 3.5 with this condition.  Anyhow, will take it easy over the weekend and hope for the best.    Take Care

Chris

Hello –

It’s been a while since I logged in.  Part of that is due to being busy (good) and another could be I’m trying to not focus too much on talking about the health aspect of my situation all the time.   With that said a quick recap of the week:

Originally the Rituxin treatment was supposed to take place last Friday with the bloodwork due the day before.  Called on Thursday and they moved everything a few days forward.  On Monday I went in at 8:30 am and saw Dr Ahmed (Oncologist).  She was pleased with the bloodwork and it was nice to see her (it had been over a month).  My next stop was the infusion suite.  My regular nurse Debbie was not in that day but despite that I was well cared for.   The first bag is always the benadryl drip which knocks me on my ass. The best way to describe it is if someone gives you a shot to go to sleep.  After about 30 min I could not keep my eyes open and the laptop was closed and I was out.  A few times I woke myself (from snoring!) to see a few other patients staring at me with a smile on their faces. Guess I was putting on a show.  Dan called me about 2 hours into this and woke me enough to answer.  I swear I could not communicate…whatever i was saying felt like I had marbles in my mouth and was totally drunk.  It was about a 5 second phone call ha.   Around this time they gave me the Rituxin which took until after 1pm to empty out.   I probably shouldnt have driven home, but I did and went straight to bed.  Mistake!  I slept till 6pm and then was awake until 4am!    

The treatment schedule was clarified.  Apparently some new studies have come out that indicate participating in the maintenance treatment one every 8 week, vs every 6 months (for 4 weeks in a row) for a total of 18 additional months has proven more successful at keeping  the cancer in remission.   My next session is June 27.

Hope everyone is having a great week!

Chris 🙂

Birthday Fun!

Hello –

The last few weeks has been busy full of appointments and catching up on work.  Continuing to feel better and becoming more active.  There are still about 6 days until my maintenance chemo (Rituxin) begins (April 29th).   I’m hoping since it’s just 1 vs 5 drugs it will not effect me so bad and allow me to bounce back quicker after each treatment.   I will need to go in for bloodwork on the 28th and then figure out the schedule for May.   My understanding was the maintenance is 4 weeks on followed by 8 weeks off, but I’m not absolutely sure, will know more on the 29th.

On another note, we went with my sister Heidi last night to Tulalip Indian Casino about 45 minutes north to celebrate her 44th birthday.  Originally we were going to spend the night at the hotel up there as a group, but her husband Erik had a last minute job (he’s a tugboat captain), so we decided to just go up for a couple of hours.    It was definitely my night – within the hour I had hit the BONUS round on a game called 50 Lions and won  $1267 (see pics below).  This happened because the highest paying character (lion) came up in the first row followed by all diamonds (which are all  WILD)  in rows 2, 3, 4 and 5.  It was the highest payout I could have won for only playing $1.25/spin = 1000 times my bet.  I had to fill out some forms and they put my name on the top of the slot machine – funny stuff.  Since it was over $1200 I will have to pay taxes on it – oh well.  No complaints though  and the best part is I walked home with all of it!

 

Sunday we are going over to Heidi’s for Easter dinner, should be fun!   Have a great week everyone!

Chris 🙂

Still Here :)

Hello –

 

Hope everyone had a great start to their week.  It’s been about 12 days since I’ve written on this blog.  During this time it’s just been nice to get back to a normal schedule and not think (or write) too much about my health situation, but rather just soak up the good news from the doctor.  It’s been about a month since I’ve had chemo and I’m feeling pretty damn good.  Energy levels and exercise have increased while the bloating has slowly left me with the steroids no longer being a part of the equation.  I’ll continue to amp things up as I’m able and of course make sure I get the rest I need.  The good news is I’m sleeping through the night and no longer dealing with the insomnia or sleeping on the couch.  My next doctor appointment is going to be on April 29 where I’ll be given the Rituxin (1 of the chemo drugs) – so that gives me about 18 more days ha.

 

On another note, this evening we went to my sister’s house in Ballard and celebrated my niece’s 9th birthday.  How quickly she has grown up – time has just flown by.   Her dad, Erik,  handled the bbq and Mark (Erik’s dad) and Margie (Mark’s wife) brought over a beautiful cake.  My mom, Uncle Marty and Dan also took part.  We had a great time despite the rainy weather.

 

This coming weekend we’ll be going to a wedding  for our friend Kim.   We’ve known her since 2005 when we purchased Daisy as a pup.  She showed Daisy through her Championships and now is showing Duke.  It should be a blast as her Fiance, Ernie, is just a peach.  He cracks us up and we are really looking forward to the wedding reception.  We are very happy for both of them.

 

Have a great week everyone and thanks again for the sweet emails of encouragement since this journey started.

 

Chris xo

Maintenance Treatment

Jackie, the nurse who works with my oncologist) called me on Monday and gave me my new schedule for maintenance treatment.  Apparently my break from the infusion suite is short lived.  I will need to go back May 1.  This gives me at least one more month, but not the 2 or more months I was hoping for.   At this time I will only be treated with the R portion of the R-CHOP chemo regimen.   The R stands for Rituxan and I put a link below if you are curious what it’s al about.

That’s it for now – take care!
Chris

http://en.wikipedia.org/wiki/Rituxan

Hello!

Today was the day to get the port removed.  The whole experience was kind of a dog and pony show.  Yesterday the nurse had called 3 times to reschedule the time and it was hard to be mad at her given her cheery disposition.  Anyhow, we showed up at 2:50 and was checked in (blood pressure, weight, pulse etc).   From here it just went down hill as I wasn’t called into the procedure room until almost 5pm.  Apparently the gal that was in before me (to have a “quick” procedure) ended up having complications which lasted more than 2 hours before she was free to go.    As a result the doctor that was supposed to work on me had to leav by 4pm and thus a resident and med student where in charge (with 3 doctors supervising).  It was all very crowded in this room that couldnt have been more than 10 x 6 feet.   I’m all about new people learning the ropes, but prefer it to be on other people haha.    They prepped me – just a local (Lidocaine) and then made the incision.  It was in there for 6 months and had encapsulated, which was normal. Fortunately it only lasted about 30 minutes and I was on my way.  Here are some pics of the port after removal.

One thing that surprised me was that it was heart shaped – how appropriate.   As you can see there is a plastic tubing that is about a foot long that comes out of the port.  This tubing was worked beneath my skin and then up and down into my jugular for the delivery of the medication.  After they took the tubing out they had to put some serious pressure on my neck for about 5 min to ensure there would be no bleeding.   Given I’m on anti-coagulants (blood thinners – Warfarin) -it was even more important.

There were about 3 stiches where the tube went in the neck and then about 6 where the port came out.  I’ll be able to take the bandage off tomorrow and shower.  The tape that’s on there will eventually fall off in about a week.  The stitches will dissolve .  It doesnt hurt, just itches a bit.

Look forward to this all healing up and being able to sleep comofortable on my left side and stomach if I feel like it.  🙂

Chris

Tag Cloud