tiah
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Hi Nancy,
I’m so sorry to hear about your friends diagnosis. You have asked some great questions and it’s quite amazing that you have done so much research for her. As Marion mentioned, CA 19-9 tumour marker is very commonly used, however some people have very low levels and therefore it may be unuseful. In my mothers case (she is the one with CC), she has always had levels below 20 regardless of her condition.
As your friends cancer has spread the chemotherapy is still going to be your best option for the current time but the SIRT Y-90 spheres could be an option. Unfortunately, it is not easy to come by doctors who perform it or have access to it, and doctors are very unlikely to perform it unless they are familiar with it, so therefore getting a referral to a doctor who does it would be ideal. SIRT is often used in other kinds of cancer (eg. bowel) where there is liver metastasis. My mother was fortunate to have SIRT and has had some positive results, however she is still unable to receive a resection and as a result is still considered incurable. As you are in Canada I’m not sure of the costs associated with SIRT as it may not be covered through the public health care (it isn’t in Australia) however we were fortunate to access it through a trial.
As for the metastasis, the only treatment is really chemotherapy with radiation an option if there is severe pain. Pain management can include a variety of other options including Dexamethasone (oral tablets) and also Denosumab infusions. (At least these are options in Australia, I would assume Canada too)
Best wishes, Tiah.Lynn, thanks so much! I will definitely get in contact with them. Mums renal function is good currently I believe. Fingers crossed!
I forgot to mention, he also said that if any further spreading occurs, mum would then be eligible for the following trial which is currently being conducted at the Royal Adelaide Hospital:
http://www.cancervic.org.au/trials/trial.asp?ContentID=nct02711553
I just don’t like the idea of having a 1/3 chance of receiving placebo, and I know nothing about the other drugs at the moment.
Bad news today. We saw mums oncologist, and he told us that apparently surgery has been off the table for quite some time now since she received SIRT. He said that although there has been reports of surgery after SIRT the risk of complications is far too high. He also said that the portal vein embolization didn’t allow a great enough growth of good liver. All news to us. We were absolutely not informed prior to SIRT that this would mean surgery would never be an option.
Now what the plan is: sit and wait. Basically, she is now to rest and wait 2 months for another scan to see if there are any signs of new disease. He was reluctant to start chemo because there would be nothing to measure against on scans as there are no spots other than the primary tumor. We also discussed pembrolizumab (keytruda) – he said he would be happy to start it if we want, but it’s completely up to us. I guess we are wondering well would it do anything right now if chemo wouldn’t either. He said he’s going to test for some marker to see if it shows she Amy be more likely to respond to the drug. It would cost us $4200AUD every 3 weeks, we are not in a financial situation to really afford this, as prior to mums diagnosis they lost the family business and home.
We’re a bit lost and stumped. Where to now? It sounds like we just have to wait 2 months, and if anything more pops up then opt for keytruda. Also thinking of contacting Peter MacCallum in Melbourne to see if she would be eligible for some trial. I’m not sure about molecular profiling and what exactly is involved, if she has received it or would she need to receive it if she was eligible for a trial.. Any advice would be great
Hi everyone.
Today Mum had her 2 spots burned off. When they did a CT they found a 3rd small spot and were able to successfully burn that off too. I believe they were going to be biopsied first and sent to pathology for testing. She is due to see her oncologist next week. Since she only had a CT 3-4 weeks ago, and another spot had popped up since then I am under the impression we no longer have time to muck around and sit and wait for resection. She is now 3 months and 1 week post SIRT. Does anyone know what the minimum wait time after receiving SIRT you can receive surgery? I have read numerous reports but I am still very unsure. Originally her surgeon wanted to wait 6 months. This brings me to the next point; if she cannot have surgery extremely soon I feel she will need chemotherapy again, which she is definitely feeling well enough for at this stage. Many questions I suppose, and in 1 week we will see the ONC and know what the next step is, as well as the pathology results. I will make sure to ask about molecular testing for the possibility of immunotherapy.
Thanks girls.
Marion, I am hoping it will be sent for molecular testing. The oncologist wants it to be biopsied for the purpose of knowing what chemotherapy mum will need to have in the future (I think for adjuvant chemo after surgery?). I will be definitely finding this out and get her to ask at her next appointment.
Luckily, I will be moving back home for a month for work in 2 weeks time (I’m living a 2 hour drive at the moment) and better yet, I will actually be working at the hospital (although in a different department) that she will be having this procedure. It’s a nice feeling to know I will be close by through this stage.
Hey everyone..
Some not so great news. Mum went in to the hospital today and they found there was 2 lesions when they did an ultrasound, and they are both on the surface of the liver on different sides. As a result, they have postponed and she will be having the lesions biopsied and then ‘burnt off’ in a couple of weeks at the major hospital here in Adelaide.
I feel pretty gutted that it has spread. I’m hoping that they burn this off and there is no spreading to lymph nodes and she will still be able to have resection in a few months time. Luckily the lesions are on the sides where the tumor is and hence the side of the liver to be resected.
I feel awful for mum, she’s exhausted emotionally.
First results from the SIRT spheres are in. There has been some success so far; the portal hypertension and oesophageal varices have now resolved as the tumor is no longer putting pressure on the portal vein. This means her surgeon is now more comfortable with performing surgery! However he said he cannot operate until 6-‘month post SIRT due to the radiation. The SIRT will continue to work in the mean time.
However, while there is all good news, it appears that there is now another spot in the liver, sitting behind the primary tumor. The oncologist was not concerned however the surgeon was and said he wants to have it biopsied and potentially burnt off? I haven’t heard of this being done before. Apparently the spot is superficial in nature. I’m still confused on what that means but from what I understand it sounds like it’s on the surface of the primary tumor. It’s all so confusing, but I suppose we will find out more about it soon.
Hello wonderful CC family. Here is another update, however I will be able to elaborate much more later this week. I feel we are all having a case of scanxiety as mum will be having her first proper scan since receiving SIRT.
I feel I have lost a track of time a little bit, but approximately 1 month since she received SIRT, mum was experiencing severe pain, to the point she could not bear it (and mum has a very high pain tolerance and rarely will take pain relief), and so she was taken to the emergency. After receiving some Fentanyl which eased the pain, they went investigating in the ED for the cause. The pain originated from the liver/right upper abdominal area and radiate outwards. They ruled out any issues with the stomach and also ruled out clots, and she had a chest scan which was clear.
Her CT scan of her abdomen was what left us very confused and worried. Originally we were told that the scan had to wait at least 2 months post-SIRT, as otherwise if a scan is done too early, the scan will show negative results, a “it’ll look worse before it looks better” scenario. Anyway, mum received a PET scan before she received SIRT which showed no spreading of disease; still just the one tumor located in the liver (however, it is extremely large). This PET scan was done at a different hospital to the one where she was in the ED with pain. So when she had the CT done, all they could compare it to was a CT scan from January this year. The results of the scan said “advancement of disease” and apparently 2 new spots in the liver were identified. However, the radiologist was also unaware of the SIRT when the report was written. At this stage we were panicking. Mum was discharged the following day as the pain eased, and she was given pain relief to take home in tablet form.
She called her oncologist the following Monday and spoke to him over the phone, who reviewed the latest scan. He said he is unsure of what the cause of the pain was and said he was not concerned about the scan, as they were comparing it to a much older scan and there’s no issues with the new scan. Which brings us to the point where we are feeling confused and overwhelmed, however we have been trying to remain positive and trust in that the oncologist had no concerns.
She is having a CT this Thursday, at the 2 month mark post-SIRT. Here’s hoping for some positive results. Will keep you all posted.
Hi Nicola,
Sorry it has taken me a few days to get on to reply. Your father is in good hands at the RAH, with regards to management of the liver related issues. My mothers surgeon (although she is yet to have surgery) is based in the hepatology department there.
If you are in the northern suburbs however and require palliative care treatment there is also the option of going to the Lyell McEwen hospital which may be closer to your home, however they likely won’t have as much experience with regards to cholangio specific symptoms, as they don’t have a hepatology department there.
I hope you dad is doing well.
Many wishes,
TiahNicola, it is so nice of you that you are dedicating your time to be with your father in his time of need. I hope that your work will be understanding of the compassionate needs at this time.
As for the palliative care, it is nice to know he will be able to be in the comfort of his own home for as long as possible, surrounded by loved ones. I’m not sure where your doctor is based, and if you are seeing an oncologist or a palliative care specialist, but I am familiar with the hospice (Daw House) at the Repatriation General Hospital, which is a fantastic inpatient palliative care service, which may be an option if things become to difficult to manage at home at some stage. I understand there can be a waiting list for this though. The hospice is remarkably special because of its “non-hospital” atmosphere, and the staff are also incredible there. Family are also welcome at any time and they have wonderful volunteers doing all kinds of work every day.
Is he receiving any medication at the moment to manage symptoms?
-Tiah
Hi Nicola,
My name is Tiah and I’m also from Adelaide. So sorry to hear about your fathers diagnosis but hopefully this community can provide you with some information and support. Unfortunately, at an age of 85 it does make it very difficult to give time frames, as each individual’s body will fight a cancer differently, and the spreading of disease varies in patient to patient. If you don’t mind me asking, where is he receiving palliative care?
As Catherine mentioned above I can’t provide too much personal experience regarding the end of life with CC but hopefully many other members can.
-Tiah
Hi everybody. I thought I would update you all on how mum is progressing post-SIRT.
It’s been a few weeks now, and as expected the side effects did settle in, most notably nausea, lethargy and loss of appetite. We were all very prepared for this. She’s finally starting to feel better however still experiencing some pain/discomfort in the upper abdominal area (near the liver). So far else nothing much to report. She will be having her first scan post-SIRT on July 21, so I will have more news for you all then.
Tiah
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
Hi Lynn,
I’m Tiah and I’m also from Australia. I’m very sorry to hear about your husbands diagnosis and that he is not feeling very well with chemotherapy. My mother (49 years old) was diagnosed with intrahepatic CC in August 2015, and we are based in Adelaide.
Having glomerulosclerosis would definitely complicate things from a chemotherapy point of view because chemotherapy generally can be quite nephrotoxic (toxic to the kidneys), and also the kidneys may not be able to clear out the drugs as well if his kidney function is poorer, and therefore the chemotherapy would need to be given in lower doses or avoiding certain types of chemotherapy drugs which are predominately cleared by the kidneys rather than the liver.
A few things worth investigating are, has he has a biopsy performed on the lymph node to ensure that the cancer has spread there? Or are doctors assuming the spreading due to CT scan results? My mother has abnormal/enlarged looking lymph nodes nearby the liver however multiple biopsies have now shown no spreading to these nodes. Also, have you discussed other methods of treatment other than chemotherapy, such as immunotherapy or radiation? The guide through the system can vary also depending on if you are a public or private patient, however being in Sydney means you are able to access services much easier.
You are welcome to have a look at the thread of my mothers journey that I have posted.
Wishing you all the best,
Tiah
