My Crappy Pancreas

March 14, 2011

Who the heck???

Filed under: folfirinox,guest post — marisaandscott @ 7:00 pm

Marisa says:  We have gotten to know some amazing people on this journey and from time to time, hopefully, we can convince some of them to share their own stories with you.  With that, I’d like to bring you our very first guest post.  For those on the same road, it may provide you with a different perspective on treatment or dealing with PC.  If you are interested in sharing your story, send me an e-mail.  And of course, I know you all will share the love.


Erin says:   So apparently Marisa and Scott’s blog is so popular that they invite guest bloggers.  I think I am the first so I’ll give you a short 411.  My name is Erin Buell.  I’m 36 and in June, 2010, I was diagnosed with pancreatic cancer.  It was a shock to me and my family as there isn’t a history of pancreatic cancer in my family and I don’t have any of the risk factors.  But, 8 months later I’m still fighting.  Like many people who have commented on this blog, I found Scott and Marisa while looking for others who were going through what I was going through.  Sadly, PC patients don’t have support groups.  We’re too busy fighting cancer and spending our time with friends and family.  And the sad truth is there isn’t enough people who have survived that long to even have a support group.  Scott and I are probably one of the first people in the United States to get FOLFIRINOX treatment for pancreatic cancer.   We both got this treatment based on a compelling French study presented at the ACS conference in July, 2010.  I have the slides if you’re interested and my email address will be at the bottom in case anyone wants to contact me.

Marisa and Scott have asked me to comment on my experience with FOLFIRINOX and I’m happy to oblige.   It is hard to condense what I’ve gone through in the past 8 months into one blog post so I’m sorry if it seems convoluted or scattered.

Short info: So days 1-3 are a loss and I just lay in bed until pump disconnect.  Days 4-7 I get a neupogen shot to boost white blood cell count.  I highly recommend in the belly if you have any sort of belly fat because the back of the arm burns.  Days 8-14 I just recover and return to normal.  Day 14 I get a blood test to see if I can have chemo again.

Side effects: So, for me, the worst side effect has been nausea.  I am always pumped full of anti-nausea meds and for the 3 days of treatment I sleep and throw up.   About round 4, I started to experience anticipatory nausea which meant that I was getting sick just walking into chemo.  Aaah…good times.  But nausea isn’t cumulative so it goes away.  In November, I experienced neuropathy that has never left. It is in my fingers and feet.  Luckily, I haven’t had it in my mouth or experienced the burning sensation that causes many patients to stop chemo.  I have lost my hair but in patches so I sort of just look like a deranged person.  And some hair grew back but it’s all come in white so now I get asked if my mom is my sister.  AWESOME.   Fatigue.  This is real and the difference between what I can do day 7 versus 14 is quite substantial.  I don’t think I could do a job or run a household on this drug.  I just try to do what I can and just understand that I will be less tired later.  I do experience cold sensitivity but it fades for me as chemo gets further and further.  However, I live in California and so I don’t know snow cold.  That being said…in December and January I was extraordinarily unhappy with the weather and its effect on my appendages.  About 3 weeks ago I went to Hawaii and my neuropathy seemed better and I had no cold sensitivity issues.  I recommend all recovery occur in tropical climates ;)

Other things: So I wanted to mention 3 other things that are not side effects that are listed in the FOLFIRINOX materials but are things that have happened to me and I wish I knew.  First, I have had to delay treatment due to low platelet counts.  Sometimes these breaks have been for a month.  The first time this happened I totally freaked out because I thought it meant that the cancer would immediately grow back.  Turns out..not true.  The chemotherapy is still there and it is active so if you want to do 3 weeks instead of 2..I recommend it.  It just makes chemo nicer and it gives you something to look forward to.  In the infusion center, I’m the first one there and the last to leave and then I take it home.  Do yourself a favor and after 2-3 treatments take an extra week break.   Both Scott and I traveled during treatment.  I went to two weddings and Hawaii.  It was worth it.  Second, about round 8 every time I started to travel I got sick.  So, if you travel I recommend brining Tylenol, a thermometer and antibiotics.  When I was in Hawaii, I got pneumonia.  If I hadn’t had the Levaquin with me I would have had to brave the Waikiki urgent care and let’s be clear, I would have gotten something else.  Instead, I took the antibiotics and felt better within 48 hours; no trip to the hospital required.  And finally, this side effect is a little hard to explain but around round 4, I felt helpless and maybe depressed.  I think the first round you’re excited for the treatment.  The second round there is adjustment to meds, your hair falls out.  And then in the third cycle everything sort of settles and you realize what you’re in for.  So, I know that between the third and fourth round I had my first mental chemo meltdown.  You think…this is it?  And typically you haven’t had your scans yet.  And for me, my CA 19-9 numbers didn’t go down until round 3 so I was feeling more demoralized because I felt that I was 36, unemployed, living with my parents, dying, and chemo wasn’t even working.  Luckily, this was the round though that I went to see my friends from law school and I came back pumped and renewed because for 72 hours the conversation was not about me or cancer.

End Result: So even though I started FOLFIRINOX on July 20, 2010  (my 36th birthday), I had my 13th (and final round) on March 1, 2011.  FOLFIRINOX has sort of worked for me.  I always hoped that the tumor would shrink 40% and I could get that Whipple surgery but it turns out that once you have mets in the liver, doctors don’t think you should have surgery.   While the tumor in my pancreas hasn’t shrunk it is stable and has not grown.  In addition, the tumor in my liver was not detectable in the last scan and the tumors in my lungs are also appear stable.  I was taking drugs stronger than morphine prior to chemo and by round 4, all pain pills were put aside.  My CA 19-9 numbers decreased into double digits at the end of December.  In January, however, they started to go up again and even though I still am not in pain, it is clear that the chemo has probably stopped being as effective as it could be.  In addition, over the past two months my pancreas is not as effective as it used to be and I’m now diabetic.

What next: So…I consulted with oncologist and got a second opinion as well and was presented with three options.  First, do nothing and just wait until the pain returns or a scan shows metastasis.  Second, do another chemotherapy.  Third, try radiation therapy.  So…it appears that Scott and I are again on similar paths.  I am meeting with radiation oncologists over the next couple of weeks to see if a plan can be developed to treat my cancer with radiation.  I think it slightly different from Scott’s plan which is to use radiation to help with pain although that is also the game plan.  I’m not sure how the treatment is different as we will both be sick and nauseous again in the coming weeks.

I want to thank Marisa and Scott for letting me post on their blog.  Please feel free to send me an email with any follow up questions.  My email address is erinkicks.pcancer@gmail.com.

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12 Comments »

  1. I also have been following Scott’s posts and found them so helpful.

    My father-in-law received the bad news about 18 months ago. He had the Whipple and the standard protocol of Chem. Things looked good for a while, but 6 months ago he was told he had 2 lesions in the liver (but only in his liver). His oncologist told him there was nothing more to do, unless he wanted to do another round of Chemo, which she didn’t think it would work. So he came to Dallas for a 2nd opinion. The oncologist had him start the Folfirinox and also had him have an RFA procedure on the lesions in his liver.

    He was only able to have 3 treatments of the Folfirinox. He was already very thin and weak by the time he came to Dallas. I’m sorry to say he died this week. But I wanted to tell you guys that the RFA was really something. It killed the 2 lesions that were treated. It was very noninvasive and was an easy procedure for him.

    Sadly his cancer was really aggressive. More lesions appeared after about 2 months. Who knows what it would have done if he could have continued the Folfirinox. I just wanted to let you know about the procedure. His first oncologist did not tell anything about RFA.

    Praying big for you!

    Comment by rachel — March 14, 2011 @ 8:52 pm | Reply

  2. Erin –

    Thank you for sharing your story. Some of my work has dealt with reviewing Ph2 and Ph3 clinical trials for cancer research. I was just curious, were you referring to the Conroy et al. research? I think I recall reading that abstract stating that the grade 3/4 toxicities were fairly manageable and that there were significantly improved OS and PFS.

    I have been following Scott’s blog and ave been sending my prayers and positive thoughts his way. Now I will send some to you as well.

    Thank you again for sharing and I wish you all the best.

    Jennifer

    Comment by Jennifer Roberts — March 15, 2011 @ 12:16 pm | Reply

  3. Erin,
    My husband and I are friends of Scott and Marisa’s for a very long time. I am so grateful that you and Scott have found each other for some solidarity on your journey. My father was also diagnosed with PC about 8 years ago. And although his battle was short, I feel so thankful to know that there are so many more tools today.

    We will be adding you and your family to our big prayers! Thanks for your generous contribution to the blog.

    –Carla

    Comment by Carla Vernon & Jason Bowles — March 16, 2011 @ 12:14 am | Reply

  4. Thank you so much for having this blog. My dear husband, Jud, was diagnosed with PC in November. He went through a course of Gemzar and then had SBRT at Stanford. We are now back at Stanford, hoping he would now qualify for surgery and just found our today that he has two spots on his liver. We researched for three hours and then we cried for the next two. He talked to his oncologist back in MInneapolis and her suggestion was Folferinox (new to me so I hope I spelled it right!) This still feels so surreal, as Jud has always been healthy and I have been disabled with a pain disorder for the last twelve years. He still looks good. You would not know he has cancer by looking at him.

    Long ramble here…we see an oncologist here tomorrow but I am guessing this is the route we will take. I read this from start to finish and I thank you so much for sharing with us.

    If either of you ever has any energy left, Jud has a Caring Bridge site (type in jud reaney at caring bridge.com). I have a blog…katsuijewelry,blogspot.com. I haven’t made any jewelry in months.

    I, too, have been looking for the support groups…you are so right.

    Thanks so much. This was so refreshing…you even made me smile. I will keep in touch!

    Sue Reaney

    Comment by Susan Reaney — March 16, 2011 @ 11:03 pm | Reply

  5. Hello! I found your blog couple months ago. My husband has been diagnosed with Stage 4 PC in Oct. of last year. He has two more Folifernox treatment left and then we are not sure what the next steps are. His onocologist recommends wait and see but I am not sure we are comfortable that. He has had good progress on this treatment but the side effects are very similar to what you have described here. It was a tough winter for him here in KY and he yes I think you are right it would have been better in Hawaii (but then again what isn’t better in Hawaii, haha). Craig is 33. It is horrible to find there are other 30 somethings struggling with this but at the same time it is nice to have someone to compare stories with since there are not too many in this same boat. merimeejourney.blogspot.com is our blog. Please keep writing on the blog and touch base with fellow ugly pancreases and their spouses.
    thanks for posting.
    michelle merimee

    Comment by Michelle Merimee — March 19, 2011 @ 8:57 pm | Reply

    • Michelle, I looked on your blog. What a wonderful, beautiful family you have! As I’ve told Marisa and Scott, they and their amazing boys have been blessed in this journey, but they are all such a blessing to others, friends and strangers. Clearly you and your husband and children, with your deep faith, courage, and commitment to send the cancer on its way, share that with Scott and Marisa and their young men. I am praying as I write this reply that God will continue to be with you, Craig, and your girls every step of the way, and, as I regularly pray “BIG” for Scott and Marisa, heal and bless you so richly that it will be undeniable to even skeptics that you are highly favored by the Most High. In the meanwhile, may you continue to have gratitude, peace that exceeds all understanding, and gratitude during your journey, despite the challenges. Take care, and thank you for sharing your story, as well.

      Comment by Leslie Overton — March 24, 2011 @ 2:31 pm | Reply

      • While “gratitude” is so important that I probably should have listed it twice (and it’s a good reminder to myself), I meant to say I’m praying for joy for your family, too, even in – especially in – the midst of your trials.

        Comment by Leslie Overton — March 24, 2011 @ 2:33 pm

  6. Marisa and Scott: I came across your blog today as I searched for Folfirinox. Once I started reading the blog I could not stop. My husband David was diagnosed with pancreatic cancer March 14, 2010 at the age of 47. I have often described the past year as a roller coaster.

    As I read your blog I had tears in my eyes. Your story is so much like our story. The feelings you had when you found out, the feeling Scott had when he received his first chemo treatment, and understanding that friends, family, and prayer are what helps us through this storm we are facing.

    I will continue to check your blog for updates and we will definantly be praying BIG for Scott.
    Melissa

    Comment by Melissa — March 20, 2011 @ 6:57 pm | Reply

  7. I am so grateful to have come across this post.
    My father, age 56, was diagnosed with Stage 4 Pancreatic Cancer on Monday.
    My father is not a surgical candidate as there are lesions throughout his liver, as well as a sizable (3.2×3.4) mass in his pancreas (junction of the tall and body).
    We were given our 3, yes 3, options. Nothing – ummm NO! The standard of Gemzar weekly; well tolerated and will buy us a “few more months”. Lastly, Folfirinox…the “aggressive” approach…the big guns which will buy us even a few more months.
    I am a nurse and have been researching for the past few days on these options. I have to say I was a bit overwhelmed by the list of possible side effects with Folfirinox. We have been a bit hesitant on pursuing for the fear of side effect, illness, and hospitalization. We are would like quality of life as well as quantity. However after reading this post, I feel like Folfirinox may be worth the try.
    Thank you,
    Crystal

    Comment by Crystal — March 23, 2011 @ 1:53 pm | Reply

  8. Well, my husband will start Folfirinox on Tuesday (port placed on Monday). We have had a crazy week of chasing clinical trials. At this point, this seemed like the best bet.

    Thanks for your blog. We will check it regularly and keep in touch.

    Sue (and Jud)

    Comment by Susan Reaney — March 24, 2011 @ 9:57 pm | Reply

  9. I am an Oncology Pharmacist and found your blog trying to dig up useful information for our first FolFirinox pt. It is a wonderful resource and I love your willingness to share the ups and downs. I thought it would be fun to share a poem written by one of our patients.

    The Oncology Game
    First they pick a PICC and check the size;
    Then add a measured hose of blue.
    It doesn’t take long (ouch) to realize,
    That the playing field is really, YOU.

    The Medics come and take a while
    To check if you’re alive this day.
    “You’re OK” they say and with a smile
    they tell, “You have 12 rounds to play!”

    Twelve Rounds!! That’s quite a hill to climb!
    In fact, that’s almost half my life.
    But then for me all that restful time,
    A tear I’ll shed for my overworked wife!

    Now the round ain’t Golf, so I don’t go there.
    But to Seven Oaks I plod my way.
    To a well-lit room and a comfy chair
    And to see how well this game I’ll play.

    God bless the pretty Nursing Corp.
    They serve for all it’s worth.
    But why do they keeep asking for
    Your name and date of Birth???

    Ahh, here comes the refreshment tree,
    With goodie bags to the letter.
    However, I’m sure we can all agree
    that we have tasted better!

    Oh well, there goes the beeping sound.
    That signal is clear to me.
    It means I’ve finished another round
    In the Game of Oncology.

    One of the Players

    God Bless

    Comment by Diana — April 1, 2011 @ 12:30 pm | Reply

  10. Our family is keeping Scott and Marisa in our prayers and will lift up all of those brave souls and their families who have contributed to this blog, have responded to it and those we do not know. We are praying BIG for a cure and the strength to continue fighting! Much Peace and Love and Many, Many Blessings to all of you! Melissa and John

    Comment by Melissa and John Starkey — April 5, 2011 @ 2:07 pm | Reply


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