Badges (1)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (39)

Wed, Jul 15 7:03am · Non- Small cell lung cancer with PIK3CA H1047R Mutation in Lung Cancer


Anyone here with PIK3CA H1047R mutations? My dad just did a liquid biopsy and this is the new mutation that we got. He has been on Keytruda for 2 years with PDL1 positive and recently diagnosed with LMD.

Suggested treatments that was included in the reports are these and we have not discussed it with doctors yet.


Any advice will help greatly.

Sat, Jul 4 7:14am · Avastin and GI bleeding in Lung Cancer

Has anyone experienced GI bleeding being on Avastin? My dad with Stage IV NCSLC and LMD is on Keytruda and Avastin. Three weeks After full brain radiation he experienced GI bleeding and doctors are saying its due to Avastin. I worry now cause was hoping that Avastin will help with his brain mets but if that is causing bleeding , now what is next?

Thu, Jul 2 12:30pm · Stage IV lung cancer, what treatments work for you? in Lung Cancer

Has anyone added any of these chemo pills to the regiment? Xelota, Temozolomide, Packitaxel.

My dad with NCSLC stage IV, keytruda has been doing a great job but for his recent diagnose LMD (leptomeningeal mets) doctor suggested to take any of these pills. Based on my reading there are good results when its taken by patients with LMD and breast cancer. Was there any study for Lung cancer? Which of these three would work better for NCSLC? Xelota, Temozolomide, Packitaxel.

Mon, Jun 22 10:03am · Hypoglycemia in Lung Cancer

Has anyone experienced hypoglycemia- low blood sugar? My dad who just finished WBR and still on low dose of dexomethasone and started Avastin experiencing hypoglycemia. He is not diabetic and never had issues.

Based in my reading Dexa causes high blood sugar and have no idea what could be the cause of low sugar level in his case.

Doctors recommended to give sweets and of course with his situation I dont want want him to take too much sweets.

Any advice? 🙏🏼

Mon, Jun 15 9:17am · NSCLC with Leptomeningeal mets in Lung Cancer

Thanks you. Yes, my mom is there and other two sisters 😄 so that helps a lot. But i want to help from here as much as possible too, Especially I know that i can find more information here.

Mon, Jun 15 8:06am · NSCLC with Leptomeningeal mets in Lung Cancer

Hi everyone,

Just wanted to give u an update. My dad finished 10 sessions of WBR this week. He is still feel weak and numb on his feet. Hope it will get better. PET results came and looks like everything else looks good. Tumor in lungs shrunk again. Yee. 🙏🏼 So at this point he will continue Keytruda and add Avastin 900 mg every 6 weeks. They did not add anything else. I worry a little bit, yes, Keytruda Has been doing a great job controlling the lungs tumor progression but it still sneaked up to brain in MLD form, so just adding Avastin would help? What are other options realistically in this case? We are planning to do liquid biopsy soon to see if there are any new mutations. Our doctor also agreed To take Silibinin.

Sat, Jun 13 5:44pm · NSCLC with Leptomeningeal mets in Lung Cancer

Thanks for asking. He finished WBR 2 days ago. He feels still weak and hardly walks due to numbness in his feet. He also did PET to check his lungs and other organs and we are waiting for the doctor to tell us the results and based on that will give us a new treatment i guess? For now he will add Avastin to Keytruda. Do u know if this feet numbness is due to WBR or LMD? Will it get better? From my side i am planning to send Fenben and Milk thistle even though doctors did not approve them but I have been readings lots of good results. I hope I am not making any mistake but I really want to help and do more. 🙏🏼

Fri, May 22 2:13pm · NSCLC with Leptomeningeal mets in Lung Cancer

Yes, he did chemo too Carbo, Alimta and Zometa but stopped 6 months ago