delia1
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Posts:2
Hi,
I’d be very grateful for any advice – my Dad has an EGFR-sensitising mutation, but after 7 weeks his oncologist took him off Tarceva, saying it hadn’t worked. She said his primary lung tumour and bone mets have stayed the same (stable), there have been no new sites, but there has been some growth during the first seven weeks of the drug, in his liver mets.
As he only took the drug for seven weeks, we are worried he’s been taken off the drug too soon. Especially as his oncologist informed us that there are no other treatment options.
Has anybody had ‘stable disease’ that showed a small progression in one area, and their treatment was therefore continued?
Thanks,
Dee
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Reply # - July 1, 2017, 06:36 AM
Hi Delia,
Hi Delia,
Welcome to GRACE. It would be difficult to say much about your Dad's doctor's advice, without more information on how many lines of treatment your Dad has had, and other information about his medical status, all of which information his doctor has at his disposal. For example, if your Dad is tolerating treatment fairly well and this is his first line of therapy, his options would be greater than if he has progressed through multiple treatment regimens. Also, if your dad's situation is more like the latter scenario, then "stable" tends to be viewed as more favorably as a good response to treatment. Under those circumstances, if the progression is minor, the current treatment is often continued.
JimC
Forum moderator
Reply # - July 1, 2017, 12:27 PM
Hi Jim,
Hi Jim,
Thanks very much for your email and advice. Tarceva was my Dad's first line of treatment, he was diagnosed 3 months ago (Exon 21, NSCLC) when he seemed fit and active but had lost his voice. From the CT scan at 7 weeks, his onc says that of the sites he has (several bone mets, liver mets, 2.5 cm lung primary), the liver that has progressed to some degree - from a mark on the original scan that was categorised as a 'possible tumour' 7 weeks ago. The other areas have remained the same/stable.
She took him immediately off Tarceva and offered no further treatment, suggesting we look at hospices. We were very shocked by this as 7 weeks ago, she reassured us that there were multiple treatment possibilities ahead.
One complication that may be influencing her - ten days ago he had a pulmonary embolism, but wasn't admitted to hospital as it wasn't large. Instead he was given blood thinners and is recovering at home. It does feel like he has been written off a few weeks into his first line treatment.
Thanks,
Dee
Reply # - July 1, 2017, 12:56 PM
Sounds like he needs a new
Sounds like he needs a new doctor or at least a second opinion. I answered you on Inspire.
Take care, Judy
Reply # - July 1, 2017, 02:22 PM
Hi Dee,
Hi Dee,
Welcome to Grace. I'm very sorry your dad has stage IV lung cancer. This is a devastating time at best, I can only imagine the worry that your dad isn't getting the best care. Like Judy suggested a 2nd opinion may be in order. If there is good reason for the onc's decision to end treatment a 2nd opinion from a lung cancer specialist at a teaching and or research center should help clear up such a drastic turn around. It's pretty common for people with lung cancer to develop pulmonary embolisms, they are typically treated with blood thinners from then on without much need to change treatment plans.
If the oncologist has made her decision to stop treatment your dad really has no other option than to move to hospice or (if your dad wants to continue anti cancer treatment) find an oncologist. At this juncture it's probably a good idea to seek out a specialist. Even if he has to travel a bit to a large city it's never a bad idea to visit a specialist during transitions in treatment (or oncologists). Afterward he could have treatment and follow up appointments with a local oncologist. This type of relationship is becoming increasingly common in oncology because the vast amount of new and changing information is impossible to stay on top of if you are treating many different types of cancer. These partnerships may need some initial massaging from a patient or caregiver but most every oncologist welcomes additional heads in decision making.
Here is a fav of mine it's about 2nd opinions, http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…
Your dad is lucky to have you looking out for him. Keep us posted.
Janine
Reply # - July 1, 2017, 09:33 PM
Hi Dee,
Hi Dee,
Judy and Janine responded before I could, but I totally agree with their recommendation of a second opinion, preferably at a teaching hospital affiliated with a quality medical school. Although it's possible there are factors that would lead to a recommendation to cease anti-cancer treatment, I think it would be good to follow that advice only after it is confirmed by another lung cancer specialist.
JimC
Forum moderator