November 6, 2015 at 11:55 pm #89855
tiah……I am hoping for the chemotherapy to cause tumor shrinkage, which in turn can cause back pain. Also, Irinotecan, one of the FOLFIRINOX agents, is quite harsh and perhaps may cause your Mom’s unwell feeling.
Agree with the others in regards to the unavoidable anxiety to scan results. Love middlesister’s recommendation of early week scans for end of week results.
Crossing my fingers for good news heading your way.
MarionNovember 6, 2015 at 10:34 am #89854middlesister1Moderator
We are so bad with the scanxiety that we make sure to minimize the time between the scan and the visit for results. Although the fear starts setting in a few weeks before, the worst (especially for Mom), are the days between the scan and visit. One time we had to wait over a weekend and she didn’t like it. Now we try for a scan on wed and results on Friday; next scan is 18th/results 20th.
I hope you get wonderful news on Monday- we’ll be thinking of you.
CatherineNovember 6, 2015 at 7:18 am #89853
Thanks Lainy. It seems she’s starting to worry herself sick, she says she has an absolutely horrible feeling that she is going to get bad news, she has been having some light back pain and she says she just doesn’t feel “right”. Not sure if this is a psychological thing or if there really is something wrong, but I’m trying to reassure her not to worry and that there could be some good news on Monday.November 6, 2015 at 2:54 am #89852
Tiah, sorry to tell you but you are being totally normal! We call the time frame before scan results, ‘scanxiety’. This may sound weird, but I then am weird anyway, I realized along life’s way that for Teddy and Me the more scanxiety I would have the better the report. Go know. As I always say we try to remain realistic optimistic!
Everyone does not get the same symptoms and most often no symptoms in the beginning at all which is why CC is so hard to DX. This has got to be the most quiet little monster until he decides to roar like a lion.
Just a suggestion, over the weekend try to go shopping with Mum for a couple of cute little caps and have a stop for lunch. Something different to do and for a change of pace. If she is tired just go to one store and hat shop and let her sit there why you try them on her. Then a quick bite and back home. It could be good for you both. Hang in and hang on.November 6, 2015 at 1:04 am #89851
Yesterday mum had her first scan (8 weeks) since starting chemo. We are awaiting the results on Monday when we see her ONC before having her next round of chemo.
I must say I am incredibly nervous about it. I’m glad he has decided to do a scan earlier than we initially thought, as we aren’t wasting anymore time on a treatment that may not be working. As for her current state of disease, to this date she still has not had any symptoms related to the disease (other than some skin itching, which was present early in her diagnosis, but the last few weeks there has been none). Considering how large her tumor is, I’m very shocked we haven’t seen any issues with the bile duct and still no jaundice, however we are very very grateful. She has maintained her weight also (up/down 1-2kg – nothing drastic).
As for her chemo, the day she receives it is the worst. The Irinotecan drug she receives causes painful leg cramping, which even occurred after her ONC gave her a 1 hour magnesium infusion prior to receiving the chemo. The leg cramping disappears after 24 hours. The lethargy its the worst she is experiencing, and she also has thinning out of her hair, which is all to be expected.
It’s still very hard to think she even has cancer, because she still lives life as per normal, except for the chemo. I’m absolutely dreading walking in on Monday to be told that the chemo has not done anything and the disease has progressed. We will not give up but I am petrified of seeing her go down this route.October 7, 2015 at 2:18 pm #89850
Tiah, I am so very happy that your Mum is feeling and looking better today. After the culture comes back they will know better what to use to treat her quickly IF this should happen again. It sounds as though you are lucky to have a more aggressive ONC and if Mum can tolerate it well, go for the best option. You will probably see Mum perking up more each day now. Yea! Happiness prevails!October 7, 2015 at 3:44 am #89849
Hi ladies, yes they did a blood culture although no results yet. Her oncologist just came to see her and luckily I was here at the time. He said the bloods are looking good and he wants to keep her in hospital for about 2 more days (she’s been in hospital for 48 hours now). Happy to know she’s on the mend, she’s looking a lot brighter today.
As for FOLFIRINOX treatment, I asked why he selected this and he said gem/via just isn’t effective enough to shrink a tumor for intention of surgery, and is often used as more of a palliative measure or to extend life, whereas FOLFIRINOX has a better response rate and because mum is young, fit and healthy he wanted to hit her hard.October 6, 2015 at 9:53 pm #89848
Oh, Marion, thank you so very much about the cultures, my mind totally forgot! Yes, Tiah a blood culture needs to be done. After about 2 visits to ER they almost met Teddy at the door to take a blood culture! It is the only way to know the type of infection.October 6, 2015 at 9:17 pm #89847
Tia….have they run a blood culture on your Mom?
MarionOctober 6, 2015 at 2:29 pm #89846
Dear Tiah, these infections just seem to go with the territory. My husband had them about every 6 months. Finally the ONC said to me, no need to call just get him to ER when he runs these fevers. Just another bump in the road but I am sure your Mum will feel much better very quickly. Nothing like an IV of antibiotic to bring one back to feeling good. Sending you lots of prayers and good wishes.October 6, 2015 at 2:05 pm #89845
Round 2 of chemo has proven to be very tough. Mum had to go to the ED yesterday as oral antibiotics weren’t cutting it for a respiratory infection and she had 2 days of a mild fever but then had a high grade fever yesterday. IV antibiotics were started immediately, then once stable was transferred to a private hospital under her oncologists care. She’s still receiving antibiotics every 6 hours via her port. Fingers crossed she recovers and she’ll be okay for her next round of chemo in 6 days. I just feel so sad for her at the moment, she had concert tickets and missed the concert tonight because she’s in hospital, but she knows her health is her number one priority.October 1, 2015 at 12:25 pm #89844genevieveParticipant
Thank you Marion
I’m not sure about timing…my lay person’s understanding is that a person needs to be off chemo for a few weeks prior to surgery. But it would take a few weeks to get an appointment anyway so might be worth investigating if your Mum was to consider it.
We are in Canberra and have been happy with the surgeon my husband sees here. Sydney is obviously a lot bigger though and from interstate I would think that Sydney or Melbourne would be the places to go. There have been people from Melbourne on this site but I don’t know who they have seen.
One of my husband’s resections was done in Sydney (because the surgeon here was away for several weeks) and the surgeon there was Dr Charbel Sandroussi. He’s at RPA or has private rooms at RPA medical centre.
GenevieveSeptember 30, 2015 at 3:12 pm #89842
Genevieve….we can always count on you. I am aware that you don’t like communicating much on this site, but you always are here to help and for that I thank you.
MarionSeptember 30, 2015 at 1:08 pm #89841
Hi Genevieve. Yes you are correct, her HPB surgeon we saw through the Royal Adelaide Hospital HPB surgery unit. There is one other major surgical unit in HPB located at Flinders Medical Centre, the states second largest hospital. Getting an opinion at Flinders is something I hadn’t thought about until you have mentioned it. We are very confident in the current surgeon however second opinions can’t hurt. Now that she is into her second round of chemotherapy, and I believe they plan on doing a scan at 8 weeks (4 rounds of chemo), should I suggest seeing a different surgeon now or once the scan has been done?
If there is any HPB surgeons who you could recommend in your state that would also be appreciated, although it seems there isn’t a shortage of them here in Adelaide.September 30, 2015 at 10:56 am #89840genevieveParticipant
I’m in Australia so thought I’d say hello, though I can’t help regarding folfirinox as my husband hasn’t had it. He has had 3 resections for ICC and has had gemcitabine once and xeloda once, both times as adjuvant therapy. I presume your mother is being seen at a major centre in Adelaide. Has she considered getting a second surgical opinion, either locally or interstate?
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