My Mum, 49yo in Australia
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Dear Tiah, I am so sorry about the walls you are hitting for your Mum. You are such a great advocate and caregiver. When things start to look gray all of a sudden there is a new light and lets hope this Surgeon in Sydney has some new ideas or at least will see Mum. Sending you the best I can over the water! Hang on and hang in you are awesome!
Mum heard from the oncologist today. Apparently she is not able to have ablation and also chemo embolization is not an option for her. I asked her why but she said she was so frustrated at how long it took for her onc to get back to her she barely listened. So gem/cis is going ahead, starting next week.
Feeling to frustrated. I need to push to find the molecular profiling of her tumor, it seems the oncologist isn’t clear on if she has or hasn’t had this done. While we are okay with chemo, inevitably it may control the tumor short term but long term we need to do something, otherwise without intervention it will continue to progress
Mum had a referral written by her GP for a second opinion by a surgeon in Sydney, and got the offices of her team of drs to forward her scans and letters to him. Once he receives them he will have a look and then contact her if he wishes to see her.
Hi Tiah,
I agree that no mets is something to be excited about – Yay!!! I hope the surgeon offer a game plan for treating the tumor. If she does end up on Gem/Cis, there are many here who have been through it and every ones seems to tolerate a bit differently. For Mom, first cycle was the worst. However, after they gave her more fluids and steroids, she did really well. I think her first cycle was also very hard since she was still recovering for the unsuccessful surgery.
I wish you the best,
CatherineHi everyone,
Mum had a follow up CT scan on Monday. Since last checking in Mum has not had any further treatment.
Today she saw her Oncologist, who said that there are no new mets (yay!), however the primary tumour has grown a few mm in size, which wasn’t the best news we wanted to hear given she had SIRT 5 months ago.
Unfortunately I was unable to attend the appointment, but mum asked about if she could have repeated SIRT treatment however her oncologist said she “already had a lifetime of radiation” and it wasn’t appropriate. I found this information conflicting given that there has been studies showing the safety profile of repeated SIRT treatments and there’s even people on these boards who have had repeated treatments also. So I have told mum to ask her oncologist (who will be calling her in the next few days) for a review by the doctor who performed the SIRT.
So the next step, as per the oncologist, is to discuss with the surgeon the possibility of microwave ablation on the primary tumour. I understand the tumour is very large so this will be difficult. The oncologist said if this isn’t possible she will be starting gemcitabine/cisplatin very shortly. I’m upset she has to return to chemo, but the side effect profile will be much better than the FOLFIRNOX she had last year. The irinotecan really took its toll on her.
As for immunotherapy, the trials available to her are apparently not showing any positive results vs chemo alone. Keytruda (Pembrolizumab) is still $$$ expensive and we cannot afford it.
Lynn, thanks so much! I will definitely get in contact with them. Mums renal function is good currently I believe. Fingers crossed!
Tiah
Have you tried the Olivia Newton John Institute in Victoria? They have recently been on the media informing the public of the benefits some patients have had with Keytruda. I contacted them recently via email as they were running clinical trials with Keytruda. My husband was not eligible as his kidney function is low but it might be worthwhile contacting them about your mum’s suitability.
Regards
Lynndeadlift….I assume that Julie is recuperating from her last treatment and may not yet be able to answer your question.
In the meantime, this link may be of help to you:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15170Hugs,
MarionTiah…..as far as I know, a select patient group may be eligible for SIRT adjuvant surgery. Certainly, there was a lack of communication and surgeon should have advised that surgery was unlikely.
This is the proposed trial: https://www.clinicaltrials.gov/show/NCT02711553
and further info:
http://www.lillytrialguide.com/EN/studies/cancer/jsbfMy opposition to CCA controlled trials with placebos is well known among the medical community. Subsequently, I have received my share of criticism from a handful of physicians. Having said that -, from a purely scientific standpoint- there is no clearer efficacy data than that of a placebo vs. established compound. Those patients wanting to contribute to science will not be opposed, but those not truly understanding the purpose of added placebo should question the investigator’s rational of protocol.
I agree with you, contacting the Peter MacCallum Cancer Center is a good next step to take.
Hang in there, dear Tiah, the CCA cancer world is full of surprises and requires due diligence on behalf of the patient and caregivers.
Hugs,
Marion1/3 of placebo AND chemo? So not purely placebo. They don’t typically do placebos for cancer. Besides, if you are testing new chemo, it’s pretty obvious if you get side affects, yup, chemo, if no side affects. nope, placebo.
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
tiah….I believe 3 months post SIRT is the minimum required. Good luck with the upcoming oncology visit, which I hope will bring about the next step of action.
Hugs
MarionHi 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.
tiah….wonderful how things worked out with the new work location, it doesn’t get much better than that.
Appears that a chemosensitivity test will be ordered. Hopefully additional tissue can be used for genetic/molecular testing as well.Hugs,
MarionThanks 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.
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