tess

We’re sending our love to you, Aunt Sophie and all the family, Hollie. Your Aunt is lucky to have such a wonderful support system, but I understand the struggles. Many hugs coming your way….

Tess

Hi Katie & happy late birthday! I’m glad you found this crew, make sure to come back & keep us posted on your progress. You have a great spirit & sense of humor! You’ve endured so much for your age & the strength you’ve found to do it has already made you a better person. Keep growing strong & healthy- you’re in our thoughts.

-Tess

Hello Ehebeler, Dad struggled to eat much on Gemzar because it affected his taste buds so strongly- the secret for him was to suck on a lemon wedge before his meals to help with the salty/metallic tastes. Of course this is not a side effect for everyone, just thought I’d pass it on in case it may help your Mom. It seemed to help Dad, along with lemonade & a mouthwash rinse.

Best,
Tess

Hi Rose, I can certainly understand your frustration about having the bile inside. Dad has been extremely jaundice for about 6 weeks, with high bili levels & they simply aren’t doing anything. I too was worried about the excess of bile in his system, but per a recent correspondence (last week) with a Prof. of Medicine at UCSF, regarding biliary toxicity, it was indicated 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.

Even with a biliary cath that they claim is in perfect position & doing its job, Dad is the most yellow he’s ever been & they simply keep saying ‘we don’t know why’. Mom doesn’t want to be the squeaky wheel, & she hasn’t really pushed the issue too hard- insisting the docs know what they’re doing.

The waiting period is so long and hard. Did they give you a prescription for the itching? Its been suggested that SARNA cream is one of best over the counter for the itching. Dad’s itching, for whatever reason, has now subsided.

Per Dad’s experience, once the consult happens, the chemo started very shortly thereafter. But it still feels like forever between meetings.

I’m sorry that you’re in so much discomfort with the pain & itching. I know Dad had to have his pain meds changed because they weren’t working properly. It may be worth calling the office back & voicing your concerns about these conditions.

You’re in our thoughts Rose!

-Tess

Hello Rose, I’m sorry to hear about your pain & life is harder in every way when you can’t sleep to replenish yourself. My Dad has been complaining of the pain in his ab region since before his cc diagnosis… it is in part what sent him to the docs in Nov. It has not gone away in his case, and some days are worse than others. While he fought taking pain pills for awhile, he now finds they give him significant relief (hydrocodone-apap 10-323 … 2 every 4 hours as need be). Heartburn & gas are also key issues for Dad. He has a biliary catheter in place, to divert the bile, instead of the standard stent. His bilirubin levels fluctuate between ~2 & ~18; it’s back up this week, with no explanation- as the doctors claim the cath is doing it’s job. We’ve talked about it many times, and it’s still not really clear if the pain might be coming from the cath, the tumor, the gas, or perhaps the newly diagnosed hernia. Docs simply aren’t sure. He has had the cath changed out a couple times, because he needed a larger one & will eventually receive his radiation via this cath (brachytherpy). Dad takes the Milk of Magnesia for the constipation & Mylanta or Malox for gas/ indigestion – which docs claim to be par for the course.

You know you can always come here to complain, vent, question, or whatever the day calls for!

-Tess

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.

Best,
Tess

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.

Sending hugs….
Tess