Update on my sister

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  • #54735
    lainy
    Participant

    Andrew, sounds GOOD! My own personal feeling is that acceptance of one’s feelings about their situation is good. I had my own rare cancer 2 years ago and honestly I hardly think about it at all. It is what it is and until they say it has come back why waste time and energy worrying about it. Life is for the living. I sure know what you mean about the odorific flatulence but you have not lived until you have smelled bile!!!! Come to think of it, bile odor could make for good war fare!
    Tell your Sister I am right with her on Bravo Housewives! With some of the comedians on our Board we could do a CC Patient/Caretaker reality show! Enjoy this time now. My thinking is that we all try to remain realistically optimistic!

    #54736
    baroque
    Participant

    A bit of news here. My sister had a PET scan done two weeks ago and her oncologist just informed her that there was no metabolic activity in the affected lymph node. After a bit of coaxing the oncologist went as far as to say there is no detectable cancer in my sister. Doctors must go to law school in addition to med school because they sure are cautious about liability!

    So, as far as modern medicine is concerned, the SBRT did its job and eliminated the recurrent CC and now my sister’s FOLFIRINOX regimen is adjuvant chemo. I should briefly mention that FOLFIRINOX side effects (nausea, fatigue) was much worse than Gemzar/Xeloda until they switched her premeds from Zofran to Aloxi/Emend. I wouldn’t say it’s a piece of cake now, but maybe a piece of pie?

    Cautious optimism is out the window for my sister though as I spent most of the time prior to the PET scan results managing her expectations. She seemed unfazed about the SBRT possibly not working. Is it still the 5th stage of grief if you indefinitely remain in Acceptance?

    Otherwise, there’s nothing much new. She got a snowboarding video game to relieve her snowsport itch. She’s learned to play a zombie shooting game. She’s terrible at it but seems to enjoy it. The other 90% of her time is spent learning about the lives of housewives in Beverly Hills/Atlanta and young adults on the coast of New Jersey. She has acquired one superpower (I know you were all wondering) but I think it’s temporary: horrible, horrible, awful poo/fart smell. I’ll spare the details but suffice to say I thought someone was doing sulfur work on the street when I first smelled it. And if you think rectal odors aren’t a superpower, then I refer you to Paul Reubens’ character in Mystery Men.

    #54752
    gavin
    Moderator

    Hi Andrew,

    Thanks for letting us know how your sister is doing. So glad to hear that the ball is finally rolling with your sisters chemo plan and I wish her every success with that. Please let us know how she gets on with it.

    My best wishes to you and your sister,

    Gavin

    #54751
    lainy
    Participant

    Pam, I can’t stand Nene! Her name should be NONO! I have come to like Kim better since she married Kroy. And she does love her children! I really adore Phaedra, she has a mind of her own. My Gastro guy is a twin to Andy Cohen. I just realized it the other day. By the way, I had my Thyroid biopsy this morning. I just want to say for anyone who may ever have to have one that it was less painless than a blood test! Now I wait a week or 2 for results. I don’t expect any big news.

    #54750
    pamela
    Participant

    Andrew,

    You are a riot! We also love bacon, can be quite snarky at times and love our bad tv. Hope your sister does well on her new chemo.

    Susie- Never be embarrassed about watching the Bachelor. That is one of my favorite shows and I have watched them all since the beginning. I think it shows we are hopeless romantics at heart.

    Lainy- I can’t wait for Courtney to get hers either. She is so evil. There is always one every season. We are huge fans of Bravo. Would never dream of missing a Housewives episode except I am not a fan of Atlanta housewives. I can’t stand Kim and Nene. Haha.

    Take care everyone.
    -Pam

    #54749
    lainy
    Participant

    May I say I watch the Bachelor too!!! Just want to see Courtney get hers! I am also a big Bravo fan!!!

    #54748
    wallsm1
    Participant

    Andrew,

    I always love your posts and the way you tease your sister. I cope with all of this much like the way you guys do. Best of luck to your sister and her treatment. I think I mentioned before that I have a port and I am really glad I got it. I’ve had to adjust my wardrobe so it stays concealed, but it’s not so bad.
    Please keep us posted on how she does. I haven’t received that chemo cocktail, so I can’t really give any advice on side effects.
    And, by the way, I am a terrible skier, but I still enjoy it!! Haven’t done it since I’ve started cancer treatment because I’ve been a little afraid but also because we have not had a good season. I’m thinking of giving it a go next weekend.

    Best wishes!

    Susie

    And I have not had any superhuman powers kick in after radiation either, but I do watch a lot of bad TV. My favorite is The Bachelor. I should be embarrassed, but I’m not, I LOVE it!!

    #54747
    kris00j
    Participant

    Hi Baroque:
    I wish your sister all the luck in the world. If you need cheerleaders, there are some GREAT ones here!!
    Your sister has got to be a strong woman to have gotten this far without a port! I did 1 chemo round and scheduled a port to be put in. They had to move the IV 3x because my vein collapsed and the 2nd one burned so badly. I had track marks for weeks! (I’m a bit of a wimp when it comes to needles… hehe)
    I’m so glad she seems to be getting good treatments, good advice, and she has you on her side!
    Wishes and prayers for continued success.

    Kris

    #54746
    lainy
    Participant

    Hi Baroque, just a note to let you know the cheer leaders are kicking in, putting on our gear, setting up the pom poms and serving bacon! There is a plan and it is now being implemented so let the games begin and here is wishing, hoping and praying for a very successfull season! Reading your post tells me that you are your Sister’s Head Coach and a great one at that! Perhaps you could buy her one of those snow globes and she will then have her own snowfall.

    #54745
    baroque
    Participant

    Well, the ball is finally rolling on my sister’s chemo treatment. It was delayed a week because when we arrived at the infusion clinic, they realized she didn’t had a port. My sister was not a happy camper because she is not a fan of surgery or things being in her body not wrapped in bacon. But there wasn’t much choice and we scheduled the surgery and rescheduled the FOLFIRINOX regimin start for this week.

    She’s scheduled for 14 cycles (1 cycle = 2 weeks) and the regimin is:
    Day 1 – Oxaliplatin, Irinotecan, Leucovorin + 5FU (injection + 48hour pump)
    Day 3 – Disconnect 5FU pump
    Day 4 – Neulasta

    The oncologist said not to be discouraged if she couldn’t finish the regimin as it’s much higher in toxicity than her Gemzar/Xeloda treatment 2 years ago. She does seem to have a higher tolerance for drugs and pain so I’m hoping she makes it all the way through (Doctors, for the second time, commented on the amount of sedation she needed during surgery. Apparently it was alot; enough that they said she needed to tell doctors in the future).

    SBRT was finished at the end of Nov but we won’t know how successful it was until they do a PET scan in Feb. The oncologist said he wanted to give the body some time to heal before scanning. Sadly, she has not developed any powers from the radiation. Unless being super snarky and watching bad television is considered a power.

    She’s only taking comfort in the fact that so far this has been a relatively poor snow season on the west coast (we’re in California). Snowboarding is what she wanted to do leading up to winter and a mediocre snow season means she isn’t missing out on much (she’s terrible at snowboarding but she likes it).

    #54744
    lainy
    Participant

    Andrew, loved your post and you made my day with some chuckles. You are a terriffic writer. Look forward to the next batch! Best wishes for SIS!

    #54743
    baroque
    Participant

    @Lainy Giving my sister powers after a hero named SuperWoman would cause catastrophic big-headedness. Maybe a hero like “ReallyAwesomeButDon’tGetAheadOfYourselfBecauseNoOneLikesEgoManiacs Woman”? ;)


    @PCL1029
    I haven’t asked about PDT yet. Mostly because my readings have me fixated on the Mayo Clinic strategy of radiation, chemo + liver transplant. The Radiation Onc and Hem/Onc both contend there should be no detectable cancer after the SBRT so I’d like to keep some tricks in the bag in the crummy instance of recurrence.


    @Susie
    My sister definitely thought radiation was worse after her first treatment. She just finished her second and it seems like she’s managed some kind of coping technique: Zofran before + Zofran, ginger tea, pot after + 6 hours sleeping. That deals with the worst of it but she hasn’t had any back-to-back days yet. Also, my understanding is that SBRT is easier to tolerate than conventional radiation so she lucked out, I suppose. You know, you’re the 5th person to suggest flying as a power? I heard an NPR story a while back suggesting people that pick flying are more “noble” and people that pick invisibility are more “mischievous”. I’m for invisibility over flight.


    @Pam
    My sister most definitely hates needles but she’s going to go with an IV for as long as possible. I think it’s a psychological thing for her. They offered her a port last time and she declined saying something to the effect of the internal struggle is also an external struggle. I think she meant she couldn’t control how crappy she felt with the chemo in her but she could control the crappiness of the IV. Sounds logical but also insane. Maybe we should be hoping for super rationality instead of super powers.

    @Marion Our Hem/Onc pretty much said the same thing as far as adjuvant therapy. I did ask why 5FU+Oxilplatin+Irinotecan and he said Gemzar/Xeloda were drugs designed to be more targeted for GI cancers (colon, pancreas, etc). Considering they were not effective in eradicating the cancer last time, he wants to use a completely different set of targeted chemo drugs. Articles I’ve read suggest Gemzar and 5FU are similar in terms of effectiveness. Oxilplatin is a platinum based drug in the same group as Cisplatin. And I don’t know much about Irinotecan other than it’s generally used for colorectal cancer. Seems like our Hem/Onc’s strategy is to mishmash chemo drugs from similar types of cancer. I don’t see that as a negative considering CC is such a mysterious bastard.


    @Patty
    Hulk had to be eliminated from a practicality standpoint; she’d be tearing through clothes like crazy. The only sound effect she makes is SNORE. Her logic is that she can’t be in a medically induced coma to bypass the side effects but she can be in a self-induced coma. :p

    #54742
    tiapatty
    Member

    Andrew, that is one smile inducing post, though I am partial to the Hulk. Sounds like your sister is ready to show chemo who is the boss–does she make sound effects? KER-POW, WHAM, SHA-ZAM!

    I am a twin so of course I have Wonder Twin powers, I can turn into any animal, including mythological creatures and animals from other planets.

    Patty

    #54741
    marions
    Moderator

    Andrew……Adjuvant therapy is hotly debated amongst physicians simply because; there is no evidence that proving it to beneficial for this cancer. There are some studies underway however; we are still a long way off from receiving the data. Has your sister’s physician explained to her as to why he is proposing the follow-up treatments with 5FU+Oxilplatin+Irinotecan? That I believe is a good question to ask. What I have learned is that rare cancers are treated often times based on a gut feeling simply because, it might work. Ultimately it will become a personal decision your sister will have to make as there is no proof that it will be effective but, there is hope that it can be just that.
    You are a great warrior for your sibling.
    All my best wishes,
    Marion

    #54740
    pamela
    Participant

    Dear Susie,
    I am so glad you are finished with your radiation. I’m sorry it has been so hard on you. What is next for you? I hope you get a chance to have a little time off of treatments and recoop for awhile. Take care and feel better.

    Love, -Pam

    Andrew,
    Best of luck to your sister on her new treatment. Like Susie said, if your sister hates needles she might consider a port. My daughter has one and is on chemo right now. I’m not much into super powers, but maybe immortality would be nice. No pain or sickness. Take care.

    -Pam

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