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NSCLC CT scan after Keytruda rounds

NSCLC CT scan after Keytruda rounds

Posted by Deb1313 on Mar 7, 2019 2:22 pm

Hi,
As mentioned in previous posts, my mom has stage 4 NSCLC (squamous) and has been on the immunotherapy drug Keytruda. Today she went for her first CT follow-up scan after about 4 rounds of Keytruda. She is supposed to get the results next week from her doc when she goes for her regular infusion. I cannot be there and sometimes my mom doesn't ask very good or detailed questions.
Does anyone on here have any suggestions as to important questions to ask regarding her lung CT scan? I will tell her to ask tumour size and shrinkage but what else? She had/has a quite large tumour in her rt lung and a smaller one in her left lung and a bit in the lining of the lung as well as lymph node involvement but no other organs.

I can tell you that before she started the Keytruda you could hardly hold a conversation with her because of the amount that she coughed and needed liquid codeine to sleep at night.Now, I have not heard her cough for a month for sure and she has not used the liquid codeine for over a month and I praise God for this daily!!
Please let me know what questions to tell her to ask. I appreciate any help I can get for her.
Take care,

Deb

Re: NSCLC CT scan after Keytruda rounds

Posted by ACH2015 on Mar 7, 2019 2:55 pm

Hi Deb1313‍ 

Many of us will ask similar questions during scheduled consults.

First off, I want to say the information you shared about your mom's positive changes in not requiring pain medication and lack of coughing are very good signs that the KEYTRUDA is doing its job. Wonderful news!

I'm sure the oncologist will share information about the tumor size and comparison to the beginning of the treatment. I'd make sure your mom mentions the news about reduced cough and need for pain meds to sleep as well. The medical team will want to know all news about improvements and side effects. The oncologist will most likely discuss the frequency of treatments and tests moving forward in your mom's care.

Is there any other family members or friends that could attend the consult with your mom? Just to be there to catch what might not be heard or write down answers. its also helpful to obtain the written consult notes from the hospital as well. Some hospitals have electronic free access to patient records through e mail. In Ontario, that includes the (UHN) University Hospital Network, and Sunnybrook Hospital.

The link below is from the Canadian Cancer Society and is a useful publication to sort out information and suggest questions to ask your medical team at consults or anytime during treatments.

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Questions%20to%20ask/32099-1-NO.pdf

I hope this helps, it sounds very positive from what you've said.👍

Keep well and keep in touch.

ACH2015 - Andy.

Re: NSCLC CT scan after Keytruda rounds

Posted by Lianne_adminCCS on Mar 7, 2019 2:55 pm

Hello Deb1313‍ 
No pun intended, but excellent question. I have the same feeling when I can't be with my mom for some of her medical appointments.
I am including a link here:
http://www.cancer.ca/en/cancer-information/cancer-journey/your-healthcare-team/questions-to-ask/?region=bc
On the left you will see an itemized list of questions for different scenarios or stages of treatment. Immunotherapy is one of those listed but there are others that may be helpful for other times, even for the times you go yourself. Hopefully some of them will be relevant and/or prompt you to think of something else that could be a consideration.

How great to hear that your mom is finding relief from the coughing!

Lianne
 

Re: NSCLC CT scan after Keytruda rounds

Posted by Deb1313 on Mar 7, 2019 9:17 pm

Lianne_adminCCS‍ , ACH2015‍ 

Thank you both for your reply!

Deb

Re: NSCLC CT scan after Keytruda rounds

Posted by Fiona on Mar 8, 2019 4:50 am

I’m not great at writing things down fast, so I tape my conversations. This way I can review my questions and answers and it reminds me of questions I forgot to ask. 

Re: NSCLC CT scan after Keytruda rounds

Posted by slf on Mar 8, 2019 4:54 am

Deb1313‍  Just get your mom to ask for a copy of the ct results, and any other test results she would like. My G.P. Is great and gives me copies of anything I ask for. My file is getting bigger and bigger.

Re: NSCLC CT scan after Keytruda rounds

Posted by WestCoastSailor on Mar 8, 2019 2:07 pm

My second set of ears can't make all my appointments either. I had been taping appointments for my wife who couldn't make any of my apppointments and I have just kept up that habit. I make a point of asking each time for permission to record.

I do have one doctor who is uncomfortable with recording but she will do a wonderful summary at the end of our discussion and lets me record that.

Angus