March 23, 2017 at 8:19 pm #89936
Tiah….we have seen a change for the better with ascities, but it is rare. I agree though that most patients are treated with diuretics and lessened salt intake with either, internal or external drain.
Of course, internal stents are the preferable choice. Is there a clinical reason for not using it in your Mom’s situation?
On the other hand, dear Tiah, I strongly believe that patient comfort comes first. Is it a bother for your Mom to go for weekly abdominal drains?
Regarding external drains: yes, there is a risk of infection, but the majority of people reporting back on this type of drain reported no problems in this regard.
Again, it’s all about comfort and convenience.
In regards to tissue testing, please know that liquid biopsies are taking on a greater role.
Sending tons of hugs your way,
MarionMarch 23, 2017 at 6:50 pm #89935gavinModerator
Not much that I can add either Tiah but keeping everything crossed for your mum and this. Please let us know how things go. Loads of positive thoughts heading your way.
My best to you and your mum,
GavinMarch 23, 2017 at 3:13 pm #89934darlaParticipant
Hoping for some good news for your mum tomorrow. Update us when you can. Thinking of you.
DarlaMarch 23, 2017 at 12:02 pm #89933
Tiah, I understand your frustration. Even at the end of Teddy’s journey people thought he looked good. Must have been the Sicilian in him! I always say that the only thing we know for sure is that we don’t know enough about this crazy monster. Can you get another opinion at this point just to see what another DOC would say or recommend? Hang in and hang on, we are all with you! I know you will keep us posted.March 23, 2017 at 8:43 am #89932
Thanks Lainy. It’s beyond frustrating because side from the ascites mum is very well. Her chemo nurses even said today she looks well and she says she feels well other than the ascites discomfort. Still no mets. She’s eating/drinking fine and very little pain apart from the occasional localized pain at tumor site. It’s hard to accept we’re running out of options.
Her CA19-9 is still low as always has been, her bilirubin is only slightly elevated (16), so minimal it’s clinically irrelevant. Her GGT is sitting around 800 and her ALP sitting at 400 AST and ALT normal. Kidneys function is excellent despite cisplatin.March 23, 2017 at 7:34 am #89931
Dear Tia, I am so very sorry to read about Mum. I cannot help but know that I am thinking about you both and sending prayers and the best wishes your way.March 23, 2017 at 6:45 am #89930
Rough news. Mum has been experiencing ascites and she’s had 2 parascentesis, one today and one a week ago. She’s due for her next CT scan tomorrow, however her oncologist popped in today while having the fluid drained and said he thinks the ascites is due to the cancer growing. Not the news we want to hear. He also mentioned about a permanent drain so she doesn’t have to return for continuous ones, however he said he will discuss it tomorrow after the scan. I’m not happy about the permanent drain considering infection risk and the fact we haven’t even tried diueretics, low salt diet and fluid restrictions so I will mention this tomorrow.
I think it’s time we get Caris or Foundation One testing. We are really running out of options and I feel we could be getting to a stage where they will want to go to a palliative route if the ascites continues. Has anyone been in a situation like this where ascites resolves? Could it be due to the gem/cis chemotherapy?
Anything else you can think of I should ask the onc tomorrow?February 3, 2017 at 11:05 am #89929middlesister1Moderator
I’m very happy to hear your Mom is having good success with the chemo- best wishes for continued success-
CatherineFebruary 1, 2017 at 4:59 am #89928
tiah….great news on the positive response and happy to see that the side effects are managed well. With your eagle eyes It’s unlikely for anything to be missed. What a great team you are!
Sending tons of good wishes for all things to continue.
MarionFebruary 1, 2017 at 2:14 am #89927
Hi everybody, thought I would just let you know that we are having some positive response to the gemcitabine/cisplatin, with the first scan showing shrinkage and no spreading! We were quite happy to hear. We are still yet to get an opinion from the other surgeon, we will likely see him once mum has ridden out the rest of the gem/cis. So we are not sure where to go next after this chemo.
She seems to be tolerating it okay, main issues are neutropenia and low platelet counts which have caused chemo to be delayed a couple of times. One time I pushed the oncologist for a few days of filgrastim, which was times well as she managed to catch a cold that thankfully didn’t progress into anything worse. She’s also had some mild cellulitis on her face which I caught on early to and ensured it was treated with antibiotics.
Besides that, she’s having some problems with pain in the bowels, which gets worse after chemo. Likely due to mucositis.November 14, 2016 at 9:20 pm #89833
tiah….based on the discussions on this board most people recover from low platelet count and may only skip one or two sessions. We used to hear more about Filgrastim (Neupogen, Zarzio, Nivestim, Ratiograstim) for raising white blood cells and or/ platelet transfusions, but presently we don’t seem to see much of it.
I have high hopes for your Mom not having to skip the next chemo infusion.
MarionNovember 14, 2016 at 3:37 pm #89834debnorcalModerator
Hopefully, the low platelet count is just a minor, temporary setback and your mom will be able to continue the chemo next week.
DebbieNovember 14, 2016 at 1:48 pm #89835
Dear Tiah, so sorry to read about the platelets but the fact that the pain has been helped is really GOOD news. I will keep everything I have (even my eyes) crossed that Mum gets to make the trip to Sydney to see the surgeon. That is what you have strived for all this time and looks like it is more of a possibility now! Good news!November 14, 2016 at 8:15 am #89836
Mum started her Gemcitabine/Cisplatin chemotherapy last week. First week was tolerated well. Some mild nausea, but beside that her energy levels have been okay and no other symptoms so far. She went today to have her second dose as part of cycle 1, however her platelets came back at 50 x 10^9/L (it was at 90 before her first dose of chemo) and they said they had to delay. They will try and do the chemo in a weeks time if her platelets are okay. Her localised liver pain has eased since chemo and her shoulder nerve pain has been near non existent which the oncologist saw as a positive sign.
We finally got all the referrals sorted to see the surgeon in Sydney so hopefully we can go see him soon also.November 1, 2016 at 7:33 pm #89828gavinModerator
I too am sorry to hear this news about your mum and the ablation. I know how frustrated you feel with this news as I came up against this a lot with my dad too. Please do not give up hope though. I am keeping my fingers crossed for you and your mum with the Gem/Cis and also for the referral as well. Please let us know how this goes.
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