@justanotherpt, It makes sense that you would want to see the full response of the chemo, so waiting to near 3 months may show a better result (but I'm not a doctor). Waiting any longer can be unsettling if the chemo isn't having an impact on the cancer.
What have they recommended for you? Longer than 3 months?
@justanotherpt, It makes sense that you would want to see the full response of the chemo, so waiting to near 3 months may show a better result (but I'm not a doctor). Waiting any longer can be unsettling if the chemo isn't having an impact on the cancer.
What have they recommended for you? Longer than 3 months?
Hi. Thanks for responding. No the order was non-specific - scan by April of '24. My last chemo is in 2 days. I've been waiting for Osi since July after official histology (aggressive features) and EGFR mutation (rare variant) genetic results. So I could schedule it for between 8-12 weeks as per guidelines or prefering to just transfer care to another instituion/oncology team to find out when to get scan, when to start osi, and other issues that have not been addressed by current oncologist.
Thanks again for responding.
I will feel more confident once I get to a place that responds more appropriately.
Hi. Thanks for responding. No the order was non-specific - scan by April of '24. My last chemo is in 2 days. I've been waiting for Osi since July after official histology (aggressive features) and EGFR mutation (rare variant) genetic results. So I could schedule it for between 8-12 weeks as per guidelines or prefering to just transfer care to another instituion/oncology team to find out when to get scan, when to start osi, and other issues that have not been addressed by current oncologist.
Thanks again for responding.
I will feel more confident once I get to a place that responds more appropriately.
@justanotherpt, Many of us have likely experienced something similar. With the increase in specialized medicine, more targeted therapies, etc. treatment has become more complex. I have the ALK mutation, and my local oncologist is very good and I respect him as a general oncologist, but he's not an expert in ALK. After a new nodule was found (which has turned out to be benign, thankfully), I did request a referral to a thoracic oncologist that has other ALK patients. I know I'm fortunate to have access to great care and these experts when I need them.
Find care that you are confident and comfortable with, it makes such a difference.
Thank you for this.
I've a rare EGFR mutation variant with only a few case reports in the lit. But I am transferring oncology care to another team that normal EGFR expertise but also a better approach to involving patients in care decisions s well as compassionate care - they actually note that the latter is in the NCCN guidelines. Crossing fingers.
With appreciation for your reply and good to hear new nodule has been benign.
@justanotherpt, Many of us have likely experienced something similar. With the increase in specialized medicine, more targeted therapies, etc. treatment has become more complex. I have the ALK mutation, and my local oncologist is very good and I respect him as a general oncologist, but he's not an expert in ALK. After a new nodule was found (which has turned out to be benign, thankfully), I did request a referral to a thoracic oncologist that has other ALK patients. I know I'm fortunate to have access to great care and these experts when I need them.
Find care that you are confident and comfortable with, it makes such a difference.
So glad the "new nodule" is benign. I am still waiting to meet the radiation oncologist- get started - then I will be taking Alectinib when I am done with radiation-
My treatment was chemo then a lobectomy (lower left lobe) next radiation.
I think we corresponded and you told me you have been on Alectininib for 3 1/2years.
So glad the "new nodule" is benign. I am still waiting to meet the radiation oncologist- get started - then I will be taking Alectinib when I am done with radiation-
My treatment was chemo then a lobectomy (lower left lobe) next radiation.
I think we corresponded and you told me you have been on Alectininib for 3 1/2years.
Hi April! @aprilradek, The doctors are a little stumped by the new nodule, they all expected it to be cancerous, so they are concerned about a false negative (that the biopsy may just not have grabbed the right cells). We are planning to do a PET in two months to see if it's changing at all and may do another bronchoscopy if it is still suspicious. I'm continuing to take alectinib, hopefully for as long as possible!
Isn't your radiation oncology appointment coming up? I hope you get your questions answered and can start soon!
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I finished my treatments yesterday and my CT scan is in February.
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2 ReactionsThank you - according to guildelines.
(More evidence that my oncologist is doing his own thing.)
@justanotherpt, It makes sense that you would want to see the full response of the chemo, so waiting to near 3 months may show a better result (but I'm not a doctor). Waiting any longer can be unsettling if the chemo isn't having an impact on the cancer.
What have they recommended for you? Longer than 3 months?
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Helpful -
Hug
1 ReactionHi. Thanks for responding. No the order was non-specific - scan by April of '24. My last chemo is in 2 days. I've been waiting for Osi since July after official histology (aggressive features) and EGFR mutation (rare variant) genetic results. So I could schedule it for between 8-12 weeks as per guidelines or prefering to just transfer care to another instituion/oncology team to find out when to get scan, when to start osi, and other issues that have not been addressed by current oncologist.
Thanks again for responding.
I will feel more confident once I get to a place that responds more appropriately.
-
Like -
Helpful -
Hug
1 Reaction@justanotherpt, Many of us have likely experienced something similar. With the increase in specialized medicine, more targeted therapies, etc. treatment has become more complex. I have the ALK mutation, and my local oncologist is very good and I respect him as a general oncologist, but he's not an expert in ALK. After a new nodule was found (which has turned out to be benign, thankfully), I did request a referral to a thoracic oncologist that has other ALK patients. I know I'm fortunate to have access to great care and these experts when I need them.
Find care that you are confident and comfortable with, it makes such a difference.
-
Like -
Helpful -
Hug
2 ReactionsThank you for this.
I've a rare EGFR mutation variant with only a few case reports in the lit. But I am transferring oncology care to another team that normal EGFR expertise but also a better approach to involving patients in care decisions s well as compassionate care - they actually note that the latter is in the NCCN guidelines. Crossing fingers.
With appreciation for your reply and good to hear new nodule has been benign.
So glad the "new nodule" is benign. I am still waiting to meet the radiation oncologist- get started - then I will be taking Alectinib when I am done with radiation-
My treatment was chemo then a lobectomy (lower left lobe) next radiation.
I think we corresponded and you told me you have been on Alectininib for 3 1/2years.
april
Last chemo June 28. CT scan Oct 3. Another scheduled for Jan 11. So about 3 mos apart.
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3 ReactionsThat makes sense - and in accordance with NCCN guidelines.
Hi April! @aprilradek, The doctors are a little stumped by the new nodule, they all expected it to be cancerous, so they are concerned about a false negative (that the biopsy may just not have grabbed the right cells). We are planning to do a PET in two months to see if it's changing at all and may do another bronchoscopy if it is still suspicious. I'm continuing to take alectinib, hopefully for as long as possible!
Isn't your radiation oncology appointment coming up? I hope you get your questions answered and can start soon!
-
Like -
Helpful -
Hug
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