CT chemo progression check

[ed7]

My mum just had her CT scan after 6 weeks of carboplatin (2 infusions/every three weeks) chemo/immuno therapy. Shes NSCLC stage IV. Reading from the report it looks as if there is no reaction at all in terms of remission. There is a total of 4 chemo runs scheduled. So two more to go.

Is this expected? Does it take a while (more than 6 weeks) for progress to set in? Or is it a bad sign in terms of the chemo not working? 

Going by experience when does one normally see any differences?

Quite devastating to think of if these horrible past couple of weeks have not helped at all...

[LexieCat]

You have to be careful about using the word "progress" with cancer--like the word "positive" (as in a positive biopsy), it isn't a good thing. "Progression" means the cancer is growing and/or spreading. So we way "improvement" or "response" when we talk about the cancer's being arrested or reduced.

Generally speaking, having the cancer stop growing/spreading is good news. She may have more of a response with the next infusions/scans. I think it's too soon to say it's not doing any good. When someone is truly not benefiting from a treatment, the oncologist usually switches to a different treatment. What did her oncologist say about the scan?

[Judy M2]

Have you spoken with her oncologist yet? What do they think? I had 6x chemo (carboplatin and taxol) plus 30x radiation and then started on a targeted therapy for my particular mutation. After being stable or improving for more than a year, I finally got to NED (No Evidence of Disease) this April. Before that, I saw a lot of "positive treatment response" or stable on my scans. Both of those terms are good. Definitely have her oncologist explain the scan report and their impression of how treatment is going. 

[Tom Galli]

Ed,

Have you had snow yet in Bern?

To reinforce Lexie and Judy, your mom is having what we call a mid-treatment scan. This is an early look at treatment results. While you report no reaction in terms of remission, I think you mean there is no report of tumor shrinkage. But, you didn't mention progression or the formation of new tumors or metastatic locations. One key purpose of this scan is to check on progression and so if progression is not reported, your scan results should be celebrated.

Our vocabulary on treatment results is a little complicated. We use remission, NED, cure, and etcetera often not knowing what these terms mean. Here is something that may acquaint you with our results-focused vocabulary. Let us hope the next scan shows tumor shrinkage and perhaps a big wish for NED.

Stay the course.

Tom

[ed7]

6 hours ago, LexieCat said:

You have to be careful about using the word "progress" with cancer--like the word "positive" (as in a positive biopsy), it isn't a good thing. "Progression" means the cancer is growing and/or spreading. So we way "improvement" or "response" when we talk about the cancer's being arrested or reduced.

Generally speaking, having the cancer stop growing/spreading is good news. She may have more of a response with the next infusions/scans. I think it's too soon to say it's not doing any good. When someone is truly not benefiting from a treatment, the oncologist usually switches to a different treatment. What did her oncologist say about the scan?

Thanks for the hint/info. You are right... I wasn't aware of the delicacy of those words.

Her oncologyst also said that this stagnation is a sign of the therapy working. We're also hoping for more of a response soon. 

Is it common that a response kicks in at a later point?

[LexieCat]

Remember, stopping the cancer from growing is a response--not a big one, but it is a sign that the treatment is affecting the cancer. It's certainly possible to see the cancer reduce in size over time. Also, with immunotherapy, there is something called "pseudo progression"--where it looks like the tumor has grown, but it's actually just inflamed because the immunotherapy is working. 

One thing I've learned the hard way--don't go by the radiology reports; the oncologist's interpretation of the scans is much more reliable. Radiologists report impressions; the oncologist knows the patient's history and treatment and what they hope/expect to see. So the best source of info is the oncologist.

[ed7]

6 hours ago, Judy M2 said:

Have you spoken with her oncologist yet? What do they think? I had 6x chemo (carboplatin and taxol) plus 30x radiation and then started on a targeted therapy for my particular mutation. After being stable or improving for more than a year, I finally got to NED (No Evidence of Disease) this April. Before that, I saw a lot of "positive treatment response" or stable on my scans. Both of those terms are good. Definitely have her oncologist explain the scan report and their impression of how treatment is going. 

Congratulations on reaching NED. That is amazing! Thanks for sharing your experience. That gives me some hope.

How long have you been on the targeted therapy for until you reached NED? 

I was always of the impression that chemo targets all those fast growing cells which tumors are composed of. However, it seems to do so for newly split cells to stop the growth. Do you know why it doesnt manage to do so with the tumor itself?

Yes, we've talked to the oncologyst and they say its too early to evaluate, but that stagnation is a sign of the therapy working.

[ed7]

5 hours ago, Tom Galli said:

Ed,

Have you had snow yet in Bern?

To reinforce Lexie and Judy, your mom is having what we call a mid-treatment scan. This is an early look at treatment results. While you report no reaction in terms of remission, I think you mean there is no report of tumor shrinkage. But, you didn't mention progression or the formation of new tumors or metastatic locations. One key purpose of this scan is to check on progression and so if progression is not reported, your scan results should be celebrated.

Our vocabulary on treatment results is a little complicated. We use remission, NED, cure, and etcetera often not knowing what these terms mean. Here is something that may acquaint you with our results-focused vocabulary. Let us hope the next scan shows tumor shrinkage and perhaps a big wish for NED.

Stay the course.

Tom

Hey Tom

No, no snow yet... Global warming is making snow a rarity down in the cities.

Yes, I was referring to a shrinkage. According to the oncologyst there is no progression. Thanks for clarifying. We're still trying to process the results to be honest. Im glad about everybody's feedback in here which helps us assess more accurately. 

Thanks for the link. I will make sure to read into the vocabulary. 

[ed7]

38 minutes ago, LexieCat said:

Remember, stopping the cancer from growing is a response--not a big one, but it is a sign that the treatment is affecting the cancer. It's certainly possible to see the cancer reduce in size over time. Also, with immunotherapy, there is something called "pseudo progression"--where it looks like the tumor has grown, but it's actually just inflamed because the immunotherapy is working. 

One thing I've learned the hard way--don't go by the radiology reports; the oncologist's interpretation of the scans is much more reliable. Radiologists report impressions; the oncologist knows the patient's history and treatment and what they hope/expect to see. So the best source of info is the oncologist.

Will take that into consideration. Thanks for sharing the info related to the inflamation. Wasn't aware of that. Is there a way to distinguish the inflamation in the Scans? 

Yes, I also read the report today and it was quite damning. Talking to the oncologyst definitely helped understand the situation. 

[LexieCat]

I think inflammation is usually identified by changes in the scans over time. The thing is, even the best oncologists often can't say with certainty what a particular scan shows. They can say, based on what I know about this type of cancer and this patient's diagnosis and course of treatment, this is what I think is going on. 

One of the best pieces of advice I can give someone newly diagnosed (or with a loved one newly diagnosed) is to try to get used to living with uncertainty. Even when it looks like things are going great (or very badly) there are surprises--both good and bad. There are people here who have had to go through several lines of treatment before they get a significant response. Other times, we can be sailing along, thinking we're doing great, and suddenly there's a change and new tumors or metastases. turn up. I try to be positive--my reasoning is that there's no reason not to believe I'll be one of those people who winds up with a durable response with the cancer gone for good. At the same time, I'm well aware that this disease might eventually do me in. My goal is to hang around, with good quality of life, as long as possible. 

[Judy M2]

Thanks, Ed. To answer your question, I started chemo and radiation on December 3, 2019 and ended on January 15, 2020.  I had serious side effects from both and had to have emergency abdominal surgery on Valentines Day 2020. I started the targeted therapy Tagrisso in March 2020 (after allowing some post-surgery recovery time). I slowly improved over the next year and was NED in April 2021.

I believe I am still clearing chemo and radiation from my system. My eyelashes fell out from chemo, grew back and still fall out to this day. Luckily my hair grew back. 

Because of pneumonitis and inflammation from radiation, my first scan in January 2020 was hard for the radiologist to read, but my oncologist was not surprised or concerned. 

I'm not sure I can answer your question about how chemo works on tumors, but all of the treatments I've undergone been effective. At this stage of your mom's treatment, no progression is a good thing! Chemo is cumulative (as is radiation), so regular scans will tell the story. Hang in there!

[ed7]

15 hours ago, LexieCat said:

I think inflammation is usually identified by changes in the scans over time. The thing is, even the best oncologists often can't say with certainty what a particular scan shows. They can say, based on what I know about this type of cancer and this patient's diagnosis and course of treatment, this is what I think is going on. 

One of the best pieces of advice I can give someone newly diagnosed (or with a loved one newly diagnosed) is to try to get used to living with uncertainty. Even when it looks like things are going great (or very badly) there are surprises--both good and bad. There are people here who have had to go through several lines of treatment before they get a significant response. Other times, we can be sailing along, thinking we're doing great, and suddenly there's a change and new tumors or metastases. turn up. I try to be positive--my reasoning is that there's no reason not to believe I'll be one of those people who winds up with a durable response with the cancer gone for good. At the same time, I'm well aware that this disease might eventually do me in. My goal is to hang around, with good quality of life, as long as possible. 

Thanks for the insight into your experience. It will take some time for us to realize this I guess, the shock is still there to be honest. 

The reason we are so focused on a shrinkage is because she's in severe pain. We were told that the tumor might be pressing against some nerves which has left her in constant pain around the rib cage. We're hoping that the remaining infusion will bring relief...

[ed7]

14 hours ago, Judy M2 said:

Thanks, Ed. To answer your question, I started chemo and radiation on December 3, 2019 and ended on January 15, 2020.  I had serious side effects from both and had to have emergency abdominal surgery on Valentines Day 2020. I started the targeted therapy Tagrisso in March 2020 (after allowing some post-surgery recovery time). I slowly improved over the next year and was NED in April 2021.

I believe I am still clearing chemo and radiation from my system. My eyelashes fell out from chemo, grew back and still fall out to this day. Luckily my hair grew back. 

Because of pneumonitis and inflammation from radiation, my first scan in January 2020 was hard for the radiologist to read, but my oncologist was not surprised or concerned. 

I'm not sure I can answer your question about how chemo works on tumors, but all of the treatments I've undergone been effective. At this stage of your mom's treatment, no progression is a good thing! Chemo is cumulative (as is radiation), so regular scans will tell the story. Hang in there!

Awesome results... despite the side effects you're still suffering.

I didnt know that chemo was cumulative. Hope to see more results going forward as her mutation doesnt offer many targeted options. 

[Judy M2]

Thankfully, I have no real side effects now except for my eyelashes, lol. I am almost normal!