Update AlimtaCarboplatin mBAC - BRAF positive - post 1 - 1246337

dutch46
Posts:38

My wife started Carbo-Alimta chemo on March 12. Just before getting her 4th chemo, she did a CT scan. The scan was compared with a baseline PET/CT scan from mid February be cause a more recent scan was compromised due to another bout with pneumonia. We were very relieved and happy to hear and see that there was a marked improvement from the baseline scan.

Initially she was struggling with low oxygen saturation levels, but after an extended treatment with antibiotics saturation levels reached the mid and upper 90s, likely the combined effect of removal of pneumonia remnants and a regressing carcinoma.

Having gone now through four cycles of chemo, she has been rather free from any serious side effects. The last two times she was lackluster for 3 - 4 days, but then got her energy back. They have been very good in managing the usual side effects.

Following each chemo she takes:
- prochlorperazine each night for three nights to prevent nausea. Thereafter, only as needed, and that is rarely the case.
- folic acid daily
- vitamin B12 (a shot every 9 weeks)
- magnesiumoxide supplement daily
- Citrical - vitamin D with calcium - daily

On the day of chemo:
premedication of palonosetron and dexamethasone sod phosphate.

Fast forward

Early June she completed the six cycles of the Alimta-Carboplatin combo. Generally, she tolerated the treatment well but on two occasions her red blood cell count had gotten so low that she required blood transfusions. No problems with that.

Her oxygen saturation levels (98) have now been normal for quite some time now and incidences of shortness of breath have greatly diminished.

A late June CT scan showed further and remarkable improvement. She is now on Alimta only maintenance (one cycle every three weeks), has had two treatments so far and is tolerating that well. Some issue with swelling of the feet but right now a minor issue.

Forums

dutch46
Posts: 38

Update post 2

Has gained some weight as she may be retaining fluids a bit more. Latest blood test showed normal levels for white blood cells and platelets with red blood cells nearing normal levels.
Her strength is coming back allowing her to get more walking and other activities in.
For now the maintenance chemo will go on through Oct with the next CT scan in Sep. 
We are very encouraged by these developments especially considering that for BRAF mBAC there is no known drug and therefore standard chemo was the first line.
We hope this feedback may be of use to others in similar situations.
 
My wife, 65 yrs.
DX Mar 11 NSCLC mBAC
Mar 11 lobectomy left LL & lower UL.
Scans: May 11 clean; July 11 bilateral GGOs; Sep 11 more prominent GGOs;
Dec 11 worsening GGOs w/ few foci more dense consolidation
Jan 12 transformation to classic adenocarcinoma
Feb 12 PET scan further growth, no mets, BRAF positive (V600E) 
Mar 12 started Carbo-Alimta chemo
Apr (25) 12 CT scan showed improvement in comparison to Feb 12 scan
Jun (25) 12 CT scan showed continued and remarkable improvement
Started Alimta only maintenance

catdander
Posts:

Dutch, I know you are very relieved that your wife responded so well to first line treatment.
Thank you for sharing this information with those who are looking for positive feedback from this type of lung cancer. Everyone starting out needs to know that treatment can be very effective in getting back to some normalcy (It's a new normal for sure).
Keep us posted on how she fairs on continuing treatment and how the swelling and fluid retention is handled.

Hopes for a long maintenance period,
Janine

Dr West
Posts: 4735

That's a great update. Good for us to know, but also very good for her and you. That plan of continuation Alimta (pemetrexed) sounds like a strong one, especially since she's generally thriving on it.

I hope we're all treated to many more good reports.

-Dr. West

dutch46
Posts: 38

The latest scan last Wednesday, after four Alimta maintenance cycles, showed a stable condition. What shows as an infiltrate apparently consists of scar tissue and BAC. However, given its presentation it is apparently difficult to differentiate between the two. I assume this will pretty much always the case with BAC but is there a way to determine what is what so that it can be determined whether there is (further) improvement or not? Intuitively I would venture that it could be possible there was further improvement but there is no way to measure or determine that. Do I see this correctly?
She will likely will continue on Alimta maintenance for the foreseeable future. Once she completes the current series of Alimta maintenance, i.e., two more cycles, they will look at it again. She has tolerated the chemo rather well but it surely will have beaten up her body. Could another series of Alimta/Carboplatin chemo result in further improvement or is Alimta maintenance still the way to go?

My wife, 66 yrs.
DX Mar 11 NSCLC mBAC
Mar 11 lobectomy left LL & lower UL.
Scans: May 11 clean; July 11 bilateral GGOs; Sep 11 more prominent GGOs;
Dec 11 worsening GGOs w/ few foci more dense consolidation
Jan 12 transformation to classic adenocarcinoma
Feb 12 PET scan further growth, no mets, BRAF positive (V600E)
Mar 12 started Carbo-Alimta chemo
Apr (25) 12 CT scan showed improvement in comparison to Feb 12 scan
Jun (25) 12 CT scan showed continued and remarkable improvement
Started Alimta only maintenance
Sep (19) 12 CT scan showed stable condition

Dr West
Posts: 4735

The only real way to tell the difference between infection or inflammation and cancer (in this case, BAC) would be to do a biopsy, such as by bronchoscopic biopsy or a CT-guided biopsy.

There is no evidence that treating beyond 4-6 cycles improves patient outcomes, and that generally isn't done. Continuing beyond that point tends to add incremental side effects more than incremental benefit, especially since people can get a hypersensitivity reaction that leads to shortness of breath, low blood pressure, and other problems with ongoing carboplatin.

Here's a discussion specifically about duration of first line therapy for advanced NSCLC:

http://cancergrace.org/lung/2007/01/17/duration-of-chemo-in-advanced-lu…

-Dr. West

catdander
Posts:

Dr. West, thanks for the input. I've found I know so little about cancer in general (after trying to follow breast cancer questions) not to mention medicine in an even larger sence. In turn I understand better I should question what I think I know. BAC clearly fits some those doubts.
To drag this even further off topic, sorry Dutch, new developments are pushing me to dig ever deeper to follow whats going on with squamous nsclc research...the mind boggles.

Yay Grace!

dutch46
Posts: 38

Dr. West, thank you for your feedback addressing both points. With the presence of scattered spots now considered stable it would rather difficult to biopsy each and everyone of these spots rendering such procedure less meaningful. When then tied in with the apparent diminishing returns of doublet treatments over and above the typical 4-6 cycles, knowing whether there is further improvement in her condition would not change the current treatment unless it can be irrefutably determined that there is NED.
So, I presume then that the maintenance program she is on now is the best way forward even on the outside chance of a NED situation, now or in the future. A change in treatment would only be needed if potential new drugs or treatments come to the fore as may be reported for example during future ASCO and ASMO conferences, or once she may not respond anymore to the current maintenance treatment.
In conclusion then she is on the right program right now.
Once again, thank you.

dutch46
Posts: 38

New update - Jan 9, 2013

Last week's scan showed an improvement over the sept-12 scan. No new lesions. Very encouraging. Maintenance treatment with Alimta only will continue every three weeks.Next scan is in April/May. My wife continues to tolerate treatment well. Occasional feelings of nausea. There are the issues of weight gain and edema. Since starting treatment she has gone from just under 140 to 165 and does experience frequent swelling. Generally her condition is much improved though, more stamina, allowing her to do increasingly more, which in turn improves her condition again. We go frequently for a walk and do then 2 miles at a time. Given the fact there is no targeted drug for BRAF in LC (there is one for melanoma but its efficacy in LC has not been shown as yet) we could not be happier with her response to standard chemo.

Here a link for current status on targeted drugs or ongoing trials for mutations in LC.

http://www.mycancergenome.org/content/disease/lung-cancer

My wife, 66 yrs.
DX Mar 11 NSCLC mBAC
Mar 11 lobectomy left LL & lower UL.
Scans: May 11 clean; July 11 bilateral GGOs; Sep 11 more prominent GGOs;
Dec 11 worsening GGOs w/ few foci more dense consolidation
Jan 12 transformation to classic adenocarcinoma
Feb 12 PET scan further growth, no mets, BRAF positive (V600E)
Mar 12 started Carbo-Alimta chemo
Apr (25) 12 CT scan showed improvement in comparison to Feb 12 scan
Jun (25) 12 CT scan showed continued and remarkable improvement
Started Alimta only maintenance
Sep (19) 12 CT scan showed stable condition
Jan (2) 13 CT scan showed improvement from prior scan - no new lesions -
Alimta maintenance to continue

dutch46
Posts: 38

New Update:
Another good scan last week. Stable, no new lesions, largest lymph node slightly smaller, no pericardial or pleural effusion, no GGOs. Alimta maintenance now once every four weeks. She is still tolerating treatment rather well but has bouts of light nausea, swelling, and further but small weight gain. Creatinine levels, as measured through the blood test, had been creeping up to 1.7, but a 24-hour urine test showed these levels to be closer to normal.
She remains very active, 2-3 miles walks two or three times a week and at a brisk pace. Occasional dizziness, lightheadedness, blood pressure is normal though. Real good days are still few. Now with an extra week perhaps the body will recover more and be stronger for the next infusion.
The apparent success of Alimta brought to mind an article I had seen two years ago about a patient with pneumonic-type mBAC (similar to my wife) who had a dramatic response to Alimta.
Here is the link: http://journals.lww.com/jto/Fulltext/2011/02000/Dramatic_Response_to_Pe…

My wife, 67 yrs.
DX Mar 11 NSCLC mBAC
Mar 11 lobectomy left LL & lower UL.
Scans: May 11 clean; July 11 bilateral GGOs; Sep 11 more prominent GGOs;
Dec 11 worsening GGOs w/ few foci more dense consolidation
Jan 12 transformation to classic adenocarcinoma
Feb 12 PET scan further growth, no mets, BRAF positive (V600E)
Mar 12 started Carbo-Alimta chemo
Apr (25) 12 CT scan showed improvement in comparison to Feb 12 scan
Jun (25) 12 CT scan showed continued and remarkable improvement
Started Alimta only maintenance
Sep (19) 12 CT scan stable condition
Jan (2) 13 CT scan showed improvement from prior scan, no new lesions
May (8) 13 CT scan stable, no new lesions/infiltrate,
Sep (11) 13 CT scan stable, no new lesions, Alimta now once every 4 weeks

dutch46
Posts: 38

Dr. West,
Further my response to your slides on maintenance, I had a question on PET scans.
I am fully aware that PET scans oftentimes give false readings. I also understand that PET scanners are uniquely calibrated. While PET scans from different scanners are not like comparing apples to oranges but perhaps more like different types of apples.
So, can one assume that areas that have an uptake on one scan will still show an uptake on a later scan if nothing has changed?
This is what I am looking at. In February 2012, prior to the commencement of Carboplatin-Alimta treatment, MDA did a PET scan (8.3 mCi) that showed numerous opacities/lesions with maximum SUVs 8.9 ; 7.8 ; 4.4 ; 4.1 ; 2.3 and 1.8.
On her most recent PET scan (13 mCi) here last March the observed GG nodule had a maximum SUV of 1.4, which within the reactive range.
Evidently, there has been a marked change. Is this due to the unreliability of the PET scan in mBAC cases because of false readings, meaning where there is an uptake today there may not be one tomorrow or, the current GG nodule aside, does this suggest that there has been a marked improvement over the past two years? If the latter, then of course the Carbo-Alimta followed by Alimta maintenance has been doing more than its job to-date.

They did mention that enrolling in a PD-1L trial (MPDL3280A) might be another option. We are not at that point yet.

Looking forward to your feedback.

Dutch46

dutch46
Posts: 38

Dr. West,
Your quick reply is most appreciated.
For sake of good order, in response to your slides on maintenance, I did leave an overview of our experience with Alimta maintenance on that page.
Appreciate all your good work to make relevant information readily available for patients and caregivers.
Sincerely,
Dutch46

catdander
Posts:

You asked about how someone might respond to a higher dose of alimta. The problem with increasing the dose is the dose is already as high as can be tolerated. When studying cancer drugs in clinical trial 3 phases of studies are required. The first phase is drug escalation where the drug is given in increasing doses until a maximum tolerated dose is reached. So you're wife is already taking the max. It's not uncommon to lessen the dose or give it less often but there are no studies that determine what is best.

The PDL 1 trials are very promising.

This link to a blog post on 2nd and later lines of therapy given when maintenance is not longer effective. There are links at the end of the discussion that are helpful as well. http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

All the best,
Janine

dutch46
Posts: 38

Thanks Janine.
Since the dosage cannot be increased, when changing the frequency from three to four weeks it effectively means a reduction in dosage of 33%. Since she was stable prior to the frequency change the detection of a new GGO after the change may have been the result of the drop in efficacy due to the dosage spread out over four weeks. In conclusion then the three weeks frequency was the right one for her. She is now on Carbo-Alimta for four cycles and will go on three weeks Alimta thereafter assuming the doublet will stabilize it.
Thanks.
Dutch46

Dr West
Posts: 4735

It's certainly possible that the progression is from a lower "dose density" of treatment over time on every 4 week Alimta, but do bear in mind that we expect to see resistance develop on Alimta given every 3 weeks as well. Other than increasing the intensity of chemo to see whether that leads to better disease control on the same agent(s), there is no way to tell the difference between resistance to the chemo and too low a dose density.

Good luck.

-Dr. West

dutch46
Posts: 38

Dr. West,
Appreciate your feedback. It cannot then be conclusively determined which is the underlying cause for this apparent recurrence.
The current schedule of four cycles of Carbo-Alimta is appropriate then and if the ensuing scan suggests stabilization or shrinkage of the newly found GG nodule it should be followed by Alimta maintenance every three weeks.
I have heard of some patients have been stable for many years on Alimta maintenance so resistance may or may not happen and when it does it will differ from patient to patient.
Thanks for your insights.
Dutch46