My Mum, 49yo in Australia
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Tiah,
Best wishes to you and Mum- please pass along Happy birthday wishes from us all.
I’m looking forward to hearing positive results. With my Mom, worst side effect from the SIRT was fatigue which did take weeks to go away, but the results were so worth it.
Best wishes,
CatherineDear Tiah, HAPPY birthday to your MUM and what a great Birthday gift she has received. Wishing her a wonderful and a much healthier year!
Tiah,
So glad to hear that the procedure went well and your mom is feeling well and in good spirits. Hope she has a lovely time celebrating her upcoming milestone birthday!
Hi everyone, Mum had her SIR spheres put in today! The doctor is extremely happy with the procedure and is feeling confident for positive results. Currently she has no pain or nausea, however we have been told to anticipate nausea and low appetite in the coming days/weeks. She’s in very good spirits and hopefully will be well enough to have a great time for her birthday next week, the big 5-0!
Will keep you all posted with further updates
tiah…….Your Mom’s inactive tumor is behaving well. I am happy to hear that she is all set to move on to the SIRT treatment and expect to hear of an exceptional response as well.
Hugs,
MarionOOPS, I read this one 2nd but such good news it is! Sending prayers, good vibes and lots of juju. I know you will let us know how Mum gets along and wish her a Happy Mother’s Day.
Hello everyone, time to update you all again.
Since my last update mum has had the first procedure for the SIRT (the mapping/angiogram part) and also a PET scan. The PET scan showed positive results, no new spreading anywhere in the body – still the one localised tumor. It also showed there is still some active disease, and that SIRT will help to kill the active disease and shrink the tumour, which hopefully enough will ultimately lead to surgery to get the damn thing out!
Mums Doctor for the SIRT treatment is positive for good results and seems to think it should all go smoothly. She will have the procedure on the 17th of May, 9 days before her 50th birthday. Today is mothers day, and because she is working today we celebrated it yesterday. I took her for a pampering session at a wonderful day spa which was just what she needed to get her to relax and chill out. She had a wonderful day and as always seeing her smile makes me so happy. It really is the small things in life. She’s been feeling pretty well, and her and Dad have been going out camping and enjoying nature when they can as well, so hopefully when she has the SIRT she can continue living how she is and doesn’t experience too many side effects.
I will keep you all posted once she has the SIRT spheres procedure!
Thanks Lainy and Marion
Mum had another call on Friday from the doctor running the SIRT therapy, and after chatting with the oncologist, feels “90% sure” she should be able to proceed with this treatment. In the next 2 weeks she will receive both an angiogram and the PET scan, to fully detail and understand exactly the mapping of this disease and how we can proceed with SIRT. We are actually very grateful because the SIRT is a trial, and as a result she does not have to pay anything for it, or travel interstate for it either!
Marion, as for the molecular testing, none has been done to date (that we are aware of), and they certainly haven’t raised the concept of using a monoclonal antibody as a treatment yet. I am aware of some trials in Melbourne, Australia, at the Peter MacCallum Cancer Centre (the leading cancer centre in the country). Some particular studies, linked below include molecular targets of PD-1. Molecular testing for mum would definitely be necessary though.
http://www.cancervic.org.au/trials/uppergi/trial.asp?ContentID=nct02660034
http://www.cancervic.org.au/trials/uppergi/trial.asp?ContentID=nct02410512However, if mums tumour is considered inactive, I’m not sure how effective any immunotherapy agents would be based on my understanding of their mechanism of action.
Tiah….congratulations on your graduation. Your Mom must be so very proud of you and so are we.
I don’t recall you mentioning molecular tumor testing and wonder whether it had been mentioned by the physicians? Some patients had some great responses harboring the ID-1 alterations. Being that your Mom is intrahepatic perhaps this could be an option for her.
Hugs,
MarionDear Tiah, this is all part of the “roller coaster ride”. A short stand still may be good for a small break in body and brain. Do something fun or something to take your minds off it a bit. It is wonderful that the DOCs will listen to others. You are very thorough and next time if a new DOC gets involved you might want to call the DOC who is supposed to be sending records to ask if indeed they were sent. A PET is good and should show what exactly is going on. Best of luck and I am so very happy that Mum got to see you Graduate!!! CONGRATULATIONS! One more thing, it is the best news that if SIRT is not for Mum there are more options!
Hey everyone.. Feeling at a bit of a standstill at the moment.
Mum saw the Doctor who is planned to perform the SIRT therapy. Unfortunately, when she saw him, her surgeon had not passed on any scans or results and so the appointment wasn’t helpful. There was a big lack of communication between them. The doctor said he was unsure if SIRT would be useful considering the tumor is ‘dead’ as this would mean it is not vascularised enough for SIRT. A senior doctor and lead in SIRT therapy from the US is visiting Australia next week to provide education on SIRT therapy to doctors, and he plans to discuss mums case with him about whether SIRT will be beneficial.
Mum saw her oncologist yesterday for a check up and port flush, and he said he was disappointed in the lack of communication between her other doctors. He rang the SIRT doctor and spoke to him while mum was there to organise a PET scan, which she will have in the coming weeks. Mum will also have an angiogram to get a greater picture on the mapping out of vessels in the liver and the tumor. The oncologist said there would be other chemotherapy options (he didn’t mention which ones), if SIRT is not appropriate.
We feel a bit drained at this point, as we have been feeling like there is no direction, and each time we are in a position where we feel there is direction then there is a road block. Obviously we are battling with time, as we don’t want the tumour to become active and spread, which the oncologist said is a possibility, as it only takes one live cell to start it off.
I’ll keep you guys posted, I just feel very drained and worried, and my poor mum feels even worse. I was so very grateful as she got to attend my graduation ceremony for university this week, something I thought may never happen when she was first diagnosed. It’s times like these that I treasure family and of course the amazing health care workers that have gotten her to where she is now, even if we are at a bit of a standstill.
Thanks Catherine and Tony. I’m still very confused about the tumor being “dead”. Mum has only had CT scans. It’s frustrating not being able to go to the appointments at the moment, but from my understanding it’s positive regardless. Does it mean the tumor is now benign? Is it just solid dead tissue? I don’t really know.
Hi Tiah,
I had Sirt Sphere treatment in January at Westmead in Sydney.
The team that did it where great, as where the reps from the company who created and delivered the spheres. I didn’t have private insurance that covered it so whilst the hospital stay etc where covered under medicare the actual spheres were not and set me back $10 000.
I had side effects that they have ever seen before and two months later they still remember my face because of it so I’m probably not the best person to talk about that side of it,
On the plus side in there words it “destroyed” my large tumor but didn’t seem to get any of the smaller ones. I remember they inserved the sprees into 2 different areas so I guess it was only a partial success.
I haven’t been able to really talk to my oncologist about it as I saw his registrar last visit and because of the way my CC has progressed they were more focused on where we can go from here.
I definately won’t be going through it ever again but that being said talking to the team beforehand they were saying how successful the procedure is.
Good luck and best wishes
Tony
Tiah,
You brought up a lot of good questions which I don’t know the answers, but will share my Mom’s experience with SIRT. It was supposed to be just a one-day procedure (Feb 2014), but not all of the tumor was killed so we had a second treatment in Nov. 2014. I am also confused if it already is dead, how it would shrink, but maybe someone else would know. At last PET scan,Mom’s tumor did not light up and our IR said the CT also appears to have only necrotic tissue. The tumor is smaller since we started, but some of the dead tissue is still there.
I found a site to explain in a bit more depth the basics of SIRT.
Best wishes,
Catherine
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