Asking for my sister: appendix adenocarcinoma w/KRAS G12V mutation

[Celestialbeing]

Hi everyone, I am based in the USA. I had papillary thyroid cancer (BRAF V600 E mutation) and a neuroendocrine cancer. I am in the thyroid cancer community here on HU. I am a moderator and facilitator in the ThyCa groups.

I am reaching out here because my sister had a very rare adenocarcinoma of the appendix. Her cancer is mutated with the dreadful KRAS G12V mutation. The cancer was found in the distal portion of the now-removed appendix during what was first thought to be appendicitis. The cancer infiltrated the peritoneum and mesentery, also the right side of colon, and some reproductive organs (they left the uterus so the cancer has somewhere to migrate-obviously it did not go there). One tumor has not been eradicated, instead, it grew (now 1.8cm) plus a few opacities of concern.

There is nothing that I can find that is promising here in the USA for treatment for her. I was hoping to find more info, studies, trials on the other side of the Atlantic Ocean.

I would be grateful to anyone that can provide more info.

[LFFH]

Hi, sorry to hear your story. Have you found an Appendix cancer specialist? That really is key to getting the right help. I would recommend joining the Facebook group ‘PMP Appendix Cancer Support Group’, which has many people from the US that can give you good advice and support . Good luck.

[Celestialbeing in reply to LFFH]

Thank you. I’m checking for my sister. She has a few specialists. Just not much hope for her.

[AngelaPMPS Partner PMPS Volunteer in reply to Celestialbeing]

As LFFH posted, it is essential that your sister finds a specialist. It is good practice to get more than one opinion.

pseudomyxomasurvivor.org/fa...

[Celestialbeing in reply to AngelaPMPS]

Thanks for your reply. She sees a specialist at Fox Chase Cancer Center, also telemed with a specialist at Emory and this week with someone from Pittsburgh. I was wondering if there are advanced treatments in the UK.

[AngelaPMPS Partner PMPS Volunteer in reply to Celestialbeing]

There are three treatments centres for appendix cancer in the UK, in Basingstoke, in Manchester and in Birmingham. They are high volume centres. One of the important factors for cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS/HIPEC, the predominant treatment) is the number of operations performed by the centre. From that perspective, they are certainly ahead of many others from sheer volume. They do not currently offer PIPAC or BromAc.

If your sister's adenocarcinoma isn't mucinous, she may not need HIPEC (likewise PIPAC or BromAc). Please remember I"m a patient and not an expert! We're all individuals an each case is different.

[Celestialbeing in reply to AngelaPMPS]

Thanks very much. Hers is mucinous