September 21, 2018 at 9:36 am #97547positivitySpectator
I understand your panic and frustration as I have been through this journey with my mom and at times overwhelming. Make sure you get breaks and not neglect your health so you can be strong enough to help. It can take you in so many directions, and it is working under pressure, and making quick decisions at times.
Can you contact Medicare and speak to a representative to assist you with the benefits? Surely, they must have an advisor.
I can’t advise on treatment or testing as that is a personal choice. What kind of CC does he have?
You are courageous to help you father and your compassion and will to do everything you can is great. I know it is stressful, but you have to take it step by step taking into consideration his physical and mental state at all times, keeping records of blood tests, scan results, and procedure reports. Most import a strong medical team in which you feel comfortable and have the confidence to communicate with easily.
Always understand the success rates and symptoms of particular treatments, and be prepared for symptom management for this illness as that is always a big concern.September 21, 2018 at 7:27 am #97545lilitmSpectator
You are being an incredible advocate for your dad from afar, learning so much in such a short time.
I do not know from the information you provide here whether or not he has enough tumor tissue slides from his biopsy to be sent for genomic testing. You mention he had to get a 2nd one – do you know how they obtained it? A needle biopsy shouldn’t be too difficult a procedure for him to undergo if needed…
I highly recommend you contact a trial at the NIH that you would be interested in for your dad, and ask them whether his biopsy can be sent to them for genomic testing. We did this for my dad when he was being evaluated for a trial upon diagnosis – we called this trial – even though he did not end up entering it at the time because he was advised to do chemo first, they did the testing – and this is the same trial we are now on: https://clinicaltrials.gov/ct2/show/NCT02821754
Regarding liquid biopsy testing – you might as well do it just in case, but I am not sure it will find as many mutations as tissue testing. Ours did not. We did the liquid biopsy testing with Guardant360, but they only found 1 non-targetable ROS1 mutation, and they did not find the same mutations that appeared on all our other tissue genomic testing with Foundation One, MSKCC, and the NIH: K-ras (q61h) and Smad4. This makes me wary that the liquid biopsy may not find obvious mutations someone has. Also as far as I know, they do not test for the immunotherapy indicators.
I have read that there are simpler ways to test for PD-1/PD-L1 and MSI, perhaps those can be tested separately from any liquid biopsy you do. I would contact your dad’s pathologist in Greece and ask if they can test for these at the hospital lab? Also ask them about sending his blood to the drug sensitivity testing in Greece because might as well?
I’m sorry I don’t know anything about Medicare yet – my dad is still too young for it and even when he has to take social security disability due to his diagnosis, they won’t give you medicare until 2.5 years after diagnosis : (
This is so beyond impossible to cope with but you are making a huge difference to your dad by taking care of all this and looking into cutting edge options for him. Sending you much love, LiliSeptember 21, 2018 at 6:29 am #firstname.lastname@example.orgSpectator
Good morning everyone,
I hope someone can provide me with some advice on this topic. I recently, and thankfully, found out through one of the participants in the discussions that there is genomic testing that can be performed on a patient to potentially find the gene mutation that caused the cancer and then that information can lead to a particular therapy that targets that mutation, through a clinical trial of course. My dad is battling cholangiocarcinoma and wants to go ahead with the test. His original biopsy came out negative, like most do, so he had to undergo another test where his cells proved the cancer. Now since dad is living overseas, would that be considered a cytology? I read through many clinical trials recently and their long lists for approvals, seems that they accept either a histology or cytology report. In addition, 95% of the trials require a particular gene mutation in order to use the targeted drug. So, I’m just trying to find out whether I can call someone directly, perhaps the NIH, perhaps Mayo to find out if his results for the cancer (cellular) are adequate. Dad is too weak to undergo procedure for tissue sampling. And will they accept liquid sampling from the lab instead of tissue? It provides them with the same results regarding gene mutations. Thank you in advance to whoever is available to answer.
On another note, yes I do need a lot of help, I’m doing this alone but I need to give him hope and he so much wants to live, for the year for the 2 years, to make that trip he always wanted to with his grandson. Please God!
I’m working on my father’s Medicare insurance. Since he’s been living abroad he wasn’t eligible for part B and D, but I want to bring him here with me, I’m in Bethesda, MD, take care of him and see what’s available on the clinical side end. I was able to put together paperwork for plan B, but for plan D I am completely lost with the choices provided, especially for a cancer patient. Any advice on this would be immensely helpful.
Thank you for reading my short “novel”. Greatly appreciated.
Wishing you all a great Friday and upcoming weekend.
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