March 1, 2009 at 6:30 pm #26205devoncatParticipantLisa wrote:No, I’m just getting the lovely infusion of cell poison once every three weeks.
Ok Lisa, I need to know when you get the cell poison. I get mine on Wednesday…are we poison partners? Sue is my cancer buddy, but I could use a poison partner.
KrisMarch 1, 2009 at 6:21 pm #26204lisaParticipant
No, I’m just getting the lovely infusion of cell poison once every three weeks.
By the way Jeff, you’re still my hero and my inspiration! God bless you and Valerie.March 1, 2009 at 5:41 pm #26203jeffgMember
Hi Lisa… I had the (FOLFOX) treatment. Are they using the Cad pump and sending you home with it already programmed? Wishing you the best girl. I know what you mean by the room temp eating and drinking. Nothing like like a warm glass of water that we are expected to to keep pushing to protect the kidneys.
Jeff G.March 1, 2009 at 4:41 pm #26202lisaParticipant
I get my second dose of oxaliplatin (FOLFOX) this Tuesday and am not looking forward to it. It’s not the sensitivity in the hands that bother me, it’s the fact that I can’t drink or eat anything below room temperature for several days. I just hope this treatment is worth it.March 1, 2009 at 2:20 pm #26201
Hello Marion & Elaine, good morning to you! Yes, Marion- It is true of Dad’s most likely reaction & if it were anyone else, Dad would smile right along with us- he’s still not lost his humor! And Elaine, two of the bros are transplants to your new region, but the third bro is down in Myrtle for a week of golf… but it may turn out to be a few days of pub hopping- given the conditions!
Thanks again for sharing the details of Gary’s story. The hernia connection to the surgery makes sense. I am still confused about what is actually leaking, while it sounds like bile (green/yellow)- it also sounds like it’s being described as a pancreas leak. Dad has a biliary catheter that is used to divert his bile & if it’s capped off, on the external tubing, it goes back into his system, but if the bag is attached it will flow right out into the bag. This tubing was the source of infection that led to Dad going septic in Dec. That’s interesting that bilirubin levels have never been discussed with Gary, though a nurse explained to us that the bilirubin level is indicative of a level of disease of the liver. Dad too is always cold, I don’t think I’d recognize him these days without his heated blanket …. when he gets the chills/shakes, he wraps it right around his head- to try and warm up, also slight stomach upset, extreme fatigue, & almost total loss of appetite.
Regarding your question about the oxaliplatin not working once you resume it, per an article I found online… “Therefore, the present study investigated the use of oxaliplatin discontinuation and reintroduction in a novel stop-and-go strategy, OPTIMOX1.”, from the American Society of Clinical Oncology. The author’s e-mail is there and it may be worth dropping him a line of inquiry…..
Regarding the lack of appetite with chemo…. While Dad is eating like a bird these days, we’ve also found that he has reverted back to earlier years in his request for food/drink. He sent us on a goose chase for butterscotch tasty cakes & Petri sugar cookies with raisins (which they quit making years ago- per Stroehmanns), and a orange juice/lemonade cocktail (which he’s not requested in Mom & Dad’s 40 yrs. together) – but claims to have enjoyed as a child. I ran into a gentleman around Dad’s age in the local grocery & told him of my quest for the tasty cakes & he said that those cakes were always a treat when the boys were younger & were definitely reminiscent of happy go lucky childhood days, the cakes are nostolgic for guys that age- he explained. The prescription appetite stimulants have not done much to stimulate his appetite & his key food group these days consist of ice cream floats & shakes. Another element of nostalgia that we’ve seen in Dad is his desire to purchase 50-70’s music. As he’s home all day now in front of the TV, I can’t believe the impact these infomercials are having on him- he sent me out for nose/ear clippers last week & insisted that I get the one with the little light & mini razor (we all know where he saw this one). If you can imagine, we found it at TJ Max in Vestal!
As an aside Elaine, specific to your old NY territory, we tried to go to dinner at Binghamton’s Kampai last night & the little guy was scared off by the sushi chef at the next table so we left, ended up at McDonalds on the parkway- a far cry from the mouth watering tempura….. FYI, they’ve removed the great playland at the golden arches in Vestal & replaced it with high end, georgous HGTV inspired glass tiles. The new room is a Starbucks replica with high-bar seating, and totally not child-friendly…. they appear to be catering to a new customer base these days.
You guys hang in there too…. many hugs coming your way!
TessMarch 1, 2009 at 12:27 am #26200elainewParticipant
I hope I can help you out by telling you Gary’s circumstances. By the way, it’s a perfectly lousy weekend here – rain, rain and more rain – and a wintry mix expected tomorrow. I hope your brothers are enjoying some inside activities!
As far as the hernias go, we were told from the very beginning that hernia surgery would be in Gary’s future because of the whipple cutting thru all the abdominal muscles. However, noone thought they would be so large. As far as we know there isn’t a connection between the hernias and his leak.
He actually has a leak directly from the pancreas because there is a spot that never healed after surgery (a first for our surgeon). He’s had an external drain now for 14 months. He has had quite a bit of leakage(from time to time) from where the tube enters his body and it is always that green/yellow color you described. For most of a year after surgery, the leakage caused infections which resulted in emergency trips to Duke, CT scans looking for pockets of fluid and replacement of the drain (or occasionally adding a second drain). In the last several months though there have been no abcesses – but still the leakage. Everytime they check the drain now, they swear it’s placed correctly and send us home. The docs analyze the fluid regularly for amylase(an indication of how concentrated the fluid is for pancreatic fluid) and the numbers are always high. So…is a pancreatic leak completely different from a bile duct leak? I would think so – and in that case I guess our experience isn’t giving you the answers you’re looking for. Bilirubin has never been mentioned to us – is that because they don’t see anything on his liver?
Gary was also on Gemzar which he was never able to complete because of all the infections. Then his numbers started to rise , so now he’s on Folfox. He hasn’t had a lot of difficulty with it(3 treatments so far) – the usual fatigue, several days of stomach upset(no vomiting), loss of appetite and some sensitivity to cold. That doesn’t seem to be as severe as others have described – maybe because he avoids the foods and situations that would set him off. He’s always cold though – sometimes wears mittens to bed!
I hope you’re Dad gets some relief soon without having another drain placed. And that the sun begins to shine in the Southern Tier to boost everyone’s spirits!! It sounds like your Dad and my husband are doing their best to confuse the doctors, but at least they get their attention.
Good luck, hang in there (do we have a choice?), and we’ll keep you in our prayers.
ElaineFebruary 28, 2009 at 7:14 pm #26199marionsModerator
Tess…as always, you amaze me with the way you are approaching your Dad’s cancer. Passing out cold over the suggestion of another stent is not what anyone would want for your Dad. I am still laughing over your description of his possible reaction.
Tons of good thoughts coming your way,
MarionFebruary 28, 2009 at 6:42 pm #26198
As always, thanks for your insights Marion. The challenge that we’re up against is that the docs are not doing anything about the bile leak or extreme jaundice, since it doesn’t appear to be causing Dad any discomfort at this point & because they don’t know what to do & can’t explain the catalyst. The oncologist & surgeon (handling the position/changing of the biliary cath) are both adamant that the biliary cath is in place as it should be (i.e. they’re alluded to the fact that this is all they can do- as its’ been an issue for at least 6 weeks, & getting increasingly worse & they’re not doing anything).
I was worried about the excess of bile in his system, but per a recent correspondence with a Prof. of Medicine at UCSF, regarding biliary toxicity, it was suggested that the form of bilirubin that is accumulating in Dad’s circulation and is being excreted in the bile will predominantly be the so-called “direct” or “conjugated bilirubin”, which is not a toxic form of the pigment. The professor indicated that we should not worry about toxicity from the yellow pigment itself, as it is highly unlikely that the bile will cause any internal damage. So I dropped the talks with Mom, to push the docs for more answers, since she wasn’t getting anywhere. I’m afraid Dad might pass out cold if we suggested they insert another drain, as this has been the major source of discomfort for him since day one!
One day at a time…. Please keep him in your thoughts.
TessFebruary 28, 2009 at 6:23 pm #26197marionsModerator
Tess…..I have seen, on this board, at times, that more then one stent was used in order to drain the bile. This is something I would ask about.
Also, symptoms other then scans were taken under consideration with my husband. The scans can only detect anything more then 1cm (the plate itself is that thick) but, what I have learned and seen on this board, the cancer progression is truly only detectable during surgery. The next best thing is the evaluation of symptoms: high tumor markers, high bilirubin, jaundice, and the general well being of the patient. Sorry, I could not be of more help to you.
Hugs coming right back at you,
MarionFebruary 28, 2009 at 5:41 pm #26196
Hello there my neighbor down the road, it’s Tess from your old NY stomping grounds! I wanted to say hello & let you know that you and Gary continue to be in our thoughts. You still feel like a neighbor, in that all 3 of my brothers are together in Myrtle Beach this week!
Those are excellent CA-19 number drops for Gary. Dad’s dropped from 26,000+ to 6,000 & are back up to 9,000+ this week. The docs say that this is one of several diagnostic tools & that while the scans aren’t showing growth of the tumor, the rise in CA-19 numbers & rise in bilirubin level (back up to 16+), are outweighing the positive results from the scan, in terms of the ‘big picture’.
We don’t have any experience with the oxaliplatin, but I do know that the docs have decided this week to change Dad’s chemo from Gemzar to 5FU & that he did have to take time off with the Gemzar for various regions between Nov & Feb. (e.g. infection, blood work readings, etc.).
I have a question for you that I hope you can assist me with. Dad is very jaundice & has high bilirubin levels & continues to leak bile out his pics. The docs can’t explain it, as they say the biliary cath (diverting the bile) is in perfect position. They’ve also said this week that Dad has a hernia. Could there be a connection between the hernias & a bile duct leak? Can you tell me more about the bile duct leak?
Thanks so much.
TessFebruary 28, 2009 at 5:01 pm #26195devoncatParticipant
I am sorry I missed this post. I dont know the answer, but I will possibly see my oncologist on Wednesday and I will try to remember to ask.
KrisFebruary 11, 2009 at 8:16 pm #1995elainewParticipant
My husband, Gary, just received his 3rd dose of FOLFOX today. He has had excellent results from the oxaliplatin. His CA-19 has dropped from 214 before the first treatment to 163 and now to 69. The plan has been for him to finish the 4th treatment and then take time out for surgery to correct his bile duct leak and huge hernias. He has been suffering with these two things for 14 months now (since his Whipple) and they seriously affect his quality of life and weight loss. Today his onc. went over the pros and cons of temporarily discontinuing the chemo and mentioned that sometimes the oxaliplatin doesn’t work once you resume it. Does anyone know anything about that? She also said there just aren’t any long term studies yet to determine if oxaliplatin prolongs life – understandably so with it being new for the treatment of cc. Thanks for any additional information anyone may have.
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