If one family can be as lucky- SIRT has saved life so far
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Thank you! That is an option, but chemo is out for now. It has been almost 2 months and we are not doing any treatment right now, other than the relief from stents. It’s for sure an extremely difficult decision, and as said very individual and hoping smart decisions are made. We will make a decision from month to month as I feel this condition is going to be month to month, not knowing what will happen from moment to moment. I don’t suggest everyone to not seek chemo, but as of now for our individual case that is the best decision. My hope is to get this condition recognized and have a better understanding, also the most important more data on various treatment options, not just one. An increase in successful clinical trials which are not chemo. Too much to ask?
Positivity, what we liked about the SIRT was for mom although bad fatigue fir a month, easier than chemo. We only had the one ICC tumor without Mets, so it made sense to us (but we’re not doctors) that the radiation would be able to travel where the surgeon couldn’t cut due to bleeding risk. But, doctors did disagree- it was only one IR who said that our goal was to kill the tumor completely- others said it was to shrink it. We’re hoping it’s still dead, but even if it does return, we’ve had over 2 years treatment free. As Marion pointed out the guidelines, i hope many mire the same success. However I would push to have it done as we did, before chemo stops working.
Best wishes, Catherinepositivity……the problem with our cancer as that of other rare cancer is the lack of research conducted. You may consult with 5 different specialists all disagreeing with their individual approaches.
Catherine brings up some important points in that the foundation is tirelessly working on bringing this cancer to he forefront of research, but ultimately, as she said so well, patients must make a decision based on what they have learned through various channels.
The only way to know that is through randomized clinical trials in where one treatment is compared to another treatment. We do not have results of a large scale studies providing us with that answer.
Hence I don’t see any other option then consulting with top leaders in their field and make a decision based on the outcome of the conversations.
Given your Mom’s health status she may be excluded from clinical trials (anemia) but then again this would have to be evaluated by an expert.
I understand the difficulties associated with this cancer. I also understand the burden placed on the patients/caregivers having to make decisions based on not clearly defined standard of treatments.
I hope for others to chime in on this conversation. Those that have walked this road are able to share the most pertinent information with us and the knowledge passed on to others is invaluable for all.
Hugs,
MarionYes, it is intrahepatic. Just curious how effective SIRT is and I suppose it varies from patient to patient. Especially, how it compares to stereotactic radiation and what is the best choice.
Thanks!
positivity…..I assume your Mom ha intraheptic disease. Am I correct? If so, then you may want to take a look at the European Guidelines:
” The new ESMO1 guidelines on biliary cancers2 were published in September 2016 as a supplement to the Annals of Oncology. Their lead author, Professor Juan Valle of the Christie NHS Foundation Trust, University of Manchester, states that SIRT, also known as radioembolisation, “may be considered in patients with inoperable iCCA, usually after first-line chemotherapy.” –
https://interventionalnews.com/new-esmo-biliary-cancer-guidelines-indicate-radioembolization-as-an-option-for-post-chemotherapy-treatment-of-intrahepatic-cholangiocarcinoma/Hello,
My mom was diagnosed almost 2 months ago. She is definitely not operable. One surgeon recommended SIRT, but another oncologist said it won’t work for her localized tumor. He said it’s better to use stereotactic radiation and Xeloda. We decided not to go back to him. My mom is weak from anemia and can’t have such harsh treatment. I was considering SIRT. You had a great experience showing it works. Again, she only has one localized tumor. What else should I consider?Thanks!
Hi Julie,
So glad to see you back
Mom spent past two weeks baking cookies and is now fighting bronchitis-we can deal with that. Hopefully meds will have her better by next week and very happy that her sugar cookies are in my freezer.love and hugs,
CatherineCatherine, Thank you for that really great explanation of your mom’s ICC history and treatment. I’m keeping that in my info file…..you never know when you’ll need it.
Irene…..Good luck to you with the SIRT treatment. We’re all pullling for it to be successful. Please let us know how you are doing.
Merry Christmas to you both…..take time to be grateful….take time to enjoy.
Julie T.
Dear Irene-
Fingers are crossed that your results are just as great as Mom’s.
Best wishes,
CatherineReading your post gave me hope. I had my first SIRT treatment yesterday with another one scheduled in four weeks. Thanks for sharing.
Dear Catherine, You have posted a very good post and I feel it will also give hope to others. Your family is very blessed and I love that you will have a memorable and beautiful Christmas, Thank you for the post and reminders here and there can only be for the best!
Hi all,
The night the surgeon said he couldn’t remove the tumor we thought there was no hope. My heart breaks for so many of our families here on this board, and far too many will not be as fortunate as my family. I know there are the majority of times where no matter how much family members help and love, this crappy disease will win. However, I believe that we can up the number of times when we win.
We have the CC board members fighting for us, but we still need to advocate for our families (and ourselves if a patient)
I noticed at the agenda for the CC conference that Mom’s treatment was not addressed. Please note this will not apply to most (and maybe none) but I need to share in case there is even one patient who could benefit. Many of you may know our story, but I am repeating in hopes that I can find that one.
Mom diagnosed Oct 2013 with one tumor (4 x 6 cm) ICC. No mets
Unsuccessful resection- closed back up w/o removing (Nov 2013)
Chemo (gem/gis)- 3 cycles. Tumor responded well- 20% shrinkage
Fist SIRT Feb 2014. Killed more of tumor.
Sept 2014, still no growth. ONC wanted to watch and wait, but the based on studies I read here, I pushed to attack while we could. Brought in IR again and he agreed to do another SIRT treatment. However, this time around our IR advocated to have xeloda for two weeks before and after treatment. (The xeloda makes the tumor absorb more of the radiation) and I hoped it’s killing any floating cells) ONC was at fist against this approach (do no harm) but IR said this helps to increase how much the tumor absorbs the radiation. ONC finally agreed.
Since this second SIRT treatment (Nov 2014) all CT scans have shown only dead tumor. PET scans show no cancer in body. Last visit the ONC suggested going to 6 months scans and we said no (still on 3-4 month cycle)
We thought the chemo would only buy us 3 months. Instead we are now past 2 years and hoping for much longer. Mom is living life, treatment-free, and we are so blessed that she will have a chemo-free Christmas and New Years. PLEASE if you or loved one has one localized tumor, make sure you are being evaluated by a multi-disciplinary tumor board and ask if SIRT can help. And, if so, try to kill it. Ask about not only having SIRT, but what dose they will give and can they give chemo in conjunction to make it more effective. You can message any of us at anytime by clicking on our names and sending a message; we are here for you.
Catherine
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