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Kate7617


Kate7617

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After CRT with good results, Doc says durvalumab, ok, 5 treatments, very bad side effects. I had to stop treatments. 5 weeks now without treatment, CT scheduled 10/31 follow up with Doc on 11/4. I have PDL 1 negative, so I have a slight chance it may work. 12% chance. Has anyone else had similar problems and done another form of treatment?

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Hi Kate.

Sorry to hear about the side effects. Last year I went through CRT with good results and was then started on Durvalumab in November. Then after only 2 treatments my ASL & ALT Liver Function Test Results shot up and was taken off it for all of December. January new CT indicated continued shrinkage of tumors and no progression. Blood test results returned to normal so I was restarted on Durvalumab. The second time around after the 5 week break, I had far less side effects. Sure they were still there, like the itching, but far less severe. I ended up in August having had 18 total Durvalumab treatments until my latest CT indicated recurrence in one tumor and involvement in a new lymph node. Until then, as a Stage 3A NSCLC patient, my ONC refused to prescribe biomarker testing as Durvalumab was the standard of care program that he follows for that stage.  Just a month ago, I had a biopsy and finally genetic testing and I came back as PDL 1 Negative but with an EML4-ALK+ gene mutation. This basically meant that I wasted a year on Durvalumab with me being both PDL-1 Negative and ALK Positive, with little or no chance of the Durvalumab actually working (according to most studies). Just this week I was started on Alectinib which is a targeted therapy oral "chemo" pill for ALK* NSCLC patients. We'll see how that goes.

I'm not a doctor, but perhaps after the break on Durvalumab, it might be worth trying again. As I said, the side effects were less the second time around for me.  But be sure that they monitor your thyroid panel, as they didn't for me until mid-treatment and then found my TSH about 10 times the upper normal limit. Now I'm also on hormone replacement pills, likely for life, trying to get the TSH level back to normal.

Besides being PDL-1 Negative, you have any identified gene mutations? It's worth checking with the ONC again to verify again as there are several TKIs out there for people with several gene mutations.

All the best - Ron

Edited by RonH
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On 10/19/2019 at 6:59 PM, RonH said:

Hi Kate.

Sorry to hear about the side effects. Last year I went through CRT with good results and was then started on Durvalumab in November. Then after only 2 treatments my ASL & ALT Liver Function Test Results shot up and was taken off it for all of December. January new CT indicated continued shrinkage of tumors and no progression. Blood test results returned to normal so I was restarted on Durvalumab. The second time around after the 5 week break, I had far less side effects. Sure they were still there, like the itching, but far less severe. I ended up in August having had 18 total Durvalumab treatments until my latest CT indicated recurrence in one tumor and involvement in a new lymph node. Until then, as a Stage 3A NSCLC patient, my ONC refused to prescribe biomarker testing as Durvalumab was the standard of care program that he follows for that stage.  Just a month ago, I had a biopsy and finally genetic testing and I came back as PDL 1 Negative but with an EML4-ALK+ gene mutation. This basically meant that I wasted a year on Durvalumab with me being both PDL-1 Negative and ALK Positive, with little or no chance of the Durvalumab actually working (according to most studies). Just this week I was started on Alectinib which is a targeted therapy oral "chemo" pill for ALK* NSCLC patients. We'll see how that goes.

I'm not a doctor, but perhaps after the break on Durvalumab, it might be worth trying again. As I said, the side effects were less the second time around for me.  But be sure that they monitor your thyroid panel, as they didn't for me until mid-treatment and then found my TSH about 10 times the upper normal limit. Now I'm also on hormone replacement pills, likely for life, trying to get the TSH level back to normal.

Besides being PDL-1 Negative, you have any identified gene mutations? It's worth checking with the ONC again to verify again as there are several TKIs out there for people with several gene mutations.

All the best - Ron

Hi Ron, thank you for the information you sent, it is good to know. No I don't take it as medical advice, however I do take it as, been there and done that, and possibly this may be the answer. Thank you. I am going to check with my doc on 11/4 with if I have any gene mutations. I'll tell you this the previous Doc was so angry when asked any questions regarding my treatment, that she actually stormed out of the appointment and left my husband and I shaking our heads as to how in the world would a Doc of cancer do such a thing. Needless to say I have a new Dr, although it is in the same facility, so it kind of gives me the heebeejeebees. My journey with cancer I wouldn't wish on anyone. Although for sure, there are none of us that want this journey, Grateful to have found a support group! Again, thank you, Ron. Kate7617

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