New forum member from the Twin Cities in Minnesota. - 1261868

Just an update:

My wife Lucy had her 4th Carboplatin/Paclitaxel/Avastin inuction therapy February 10th. A CT scan last Friday, Febraury 28th shows continued primary tumor reponse (I don't have the numbers handy, but it's shrunk to about 1/3 volume) and the mediastinal nodes they were tracking, while having responded through the first two treatments are stable.

Now, she has been randomized into the Avastin (bevacizumab) arm of ECOG 5508 for maintenance therapy. She had her first dose last Monday, March 3rd.

Hello again. I don't know whether to continue here or start another thread, but will stay here for now.

Just got back from Lucy's oncologist, scan results show stable disease, so we're happy. Another bevacizumab drip and and hour or so later we're on our way.

Sure is a lot easier than the induction therapy. Blood pressure climbed a bit due to the bevacizumab, runny nose with some pinkish color left on the tissue paper, but everything tolerable.

We'll take it, but I sure wish those immunotherapy investigators would hurry up, to give the oncologist another arrow for her quiver.

Update July 2014.

A little frustrated yesterday, our oncologist's father died and she's gone to India for a month, so we had a fill in, an oncologist new to the practice. Nice enough, but would have preferred our understandably absent doctor. If she ever happens upon this post, I want her to know we have best wishes for her.

Anyhow, Lucy's cough is worse, we were anticipating news of progression. CT results - main tumor stable, nodes stable except one resolved. However, a nodule in the lower lobe has enlarged (1.7 to 2.1 cm, but apparently it's hard for them to say with certainty). The end result is 'stable' but the term mixed result was mentioned. I'm a little confused by that. But no change in treatment recommended at this time - continuing Bevacizumab maintenance (ECOG 5508 study).

An antibiotic was prescribed to see if it would help with coughing (she'll have quite a coughing spell, and result in what she says is a teaspoon or two of thick mucous, no color). I wish we could do something about the coughing, it's heartbreaking to witness, she almost retches sometimes.

AST was at 49, the oncologist asked about tylenol or alcohol use (none). I hope it's not an early sign of liver involvment, but the oncologist says not to be concerned about that. OK. Gulp.

Jim and Dr West, thanks for your responses.

My general modus operandi (in life) seems to be to hear something, get up in the air a bit, go out and learn things that then settle me back down. This appears to follow that path.

1) Between the time of the post and responses, I learned just how slight the AST elevation was, and was thinking "Gee, that's so small, maybe it's the large amount of really hard coughing" and that night Dr West mentions how small it is and myriad possibilities, including hiccups. No proof of anything, but reassuring to the point where I'm not concerned. Being an electrical engineer, I know what signal and noise is, our term for it is SNR - signal to noise ratio.

2) The CT scan report did not say mixed response, I think the oncologist might have used it informally and would have chosen a different term if she knew I would immediately go out and see what that meant. The fact that Lucy is in a study that is closely monitored, where mixed response might be used in a stricter fashion than outside the study (thanks for the links to the mixed response videos, Dr. West), indicates to me that it's not truly 'mixed response'. This is comforting as well, although I'll maintain a heightened awareness.

3) Her cough. A few months ago, her BP was higher, this was felt to be due to the Avastin, and lisinopril was prescribed to control the BP. Again, ruminating around, I find lisinopril is an ACE inhibitor, and there is such a thing as an ACE cough. Now, she's had a cough due to the cancer, but in the last few weeks the cough has gotten worse, hence we were expecting a bad scan report. Since the scan was good, we will explore with the doctor the possibility of the ACE cough effect. If the cough can be improved, it will be a mercy.

So, we keep going, but I feel a lot better today than a couple days ago.

Thanks for the continuing education (albeit not on a subject of choice).

Tom

Thanks, Janine.

This is a well worn path for Lucy and I. We have tried the simple things you mentioned, Benadryl and Claritin for potential allergies, Levaquin for sinus infection, Prilosec. Cough syrups and Tessalon perles.

She's had the cough for a long time (lead to the cancer dx), but it's really bad lately, and while I am reluctant to state it as a fact until I know, I STRONGLY suspect the lisinopril ACE inhibitor as worsening the cough - the timing seems quite suspicious to me. I just wish I had found the possible ACE cough link sooner, I don't know how I missed it.I need to go through cancergrace more diligently. Dang me, anyhow.

But time will tell, we have a call in to the nurse, she will speak with the Doc and get back to us, today I'm sure. I'd like to see a switch away from the ACE inhibitor.

Thanks again, and thanks to all who have expressed good wishes. Back at you.

Tom

Another running update on my wife Lucy.

Her arm of the ECOG 5508 protocol calls for bevacizumab every three weeks, and a CT scan every third treatment, so 2 months between scans.

The scan report today is still deemed stable, so "Yay!" for that.

The last treatment was delayed about a week due to proteinuria. A 24 hour urine test allowed treatment to resume, but today's scheduled dose was not delivered, proteinuria again, 24 hour test again, I hope treatment can continue.

Hoping for good news out of ESMO.

Tom

I don't have as much to contribute as some of the impressive folks around here, but maybe someone will read this someday will be on a similar path and want to know what others have experienced.

Lucy's last round (of 4) of induction therapy was February 10, 2014. She has been on Bevacizumab maintenance ever since, at three week intervals. Every third round of therapy (basically two month intervals) a CT scan is performed to monitor the cancer. These are highly anticipated, as they are an objective means of seeing what's happening. We got results of the latest CT scan today, 12/3/2014.

She remains stable, technically, but it is clear we are approaching the point where a change will have to be made. We will stay on this treatment for now, but perhaps at the next scan alternatives will have to be explored, perhaps the OAK trial of MPDL3280A.

So, we're happy for today and the foreseeable future, but we need those researchers to come through with new treatments.

Well, it's the end of the road for the bevacizumab, Lucy has been on it for a year as part of the ECOG 5508 study. No treatment today, and hopefully her blood pressure will return to normal and maybe she can be relieved of her rhinitis and perhaps that will help her cough.

So, papers were signed for the OAK study (MPDL3280A or Docetaxel). It's a little unclear to me as yet, but I guess there will be a flurry of activity as tests are obtained (and perhaps a new biopsy) in preparation. And of course, randomization, so that remains to be seen.

Unfortunately, it will involve a change of oncologists, but to one selected by our current Dr., who has been (along with her team) very nice to work with.

Ouch. Lucy has been disqualified from the MPDL3280A OAK trial, a cranial MRI reveals two brain lesions.

This has set us back on our heels, we're waiting for a meeting with our oncologist.

OK, time for another update, I have been remiss.

Back in March, Lucy had stereotactic surgery on her brain mets (two of them). Besides some half dollar size bald spots, she tolerated it effortlessly. An MRI was performed yesterday to evaluate the response, with no call from the doctor as of this afternoon, I hope I can take that as a good sign.

Lucy has been on Alimta, and is stable. BUT, two issues have come up.

She had a bout a few weeks ago with elevated temps (101), elevated heart rate (sometimes over 110) and low O2 sats (low nineties). She felt terrible. The doctor prescribed a Zpac antibiotic regimen for an apparent infection, put her on MSContin extended release, and daily dexamethasone, all to good effect, she's feeling better now than in a long time, and numbers have returned to normal.

The oncologist mentioned at last Wednesday's visit of a suspicious growth on her kidney. Without doing a biopsy, they can't say anything for sure, but they feel (educated guess, she said) this is not a metastasis, but an occurrence of kidney cancer. Normal procedure would be to excise the kidney, but she feels the surgeon would push back and say "Why? What about the lung cancer?"

Now, I initiated discussion on the fact that one or more of the PD-1 blockade drugs would be approved soon for adeno NSCLC, and that it has also shown promise against kidney cancer. So the approach as of right now is to not treat the kidney cancer, but wait and see, maybe the PD1 drug will treat two birds with one stone when the time comes.

But it nags me that we're not treating (until the Alimta is no longer effective, and the PD1 drugs come along). I would hate to see her NSCLC have a good response to the PD1 drug (not a given, by any means, I know) only to have the kidney cancer take her because we waited.

I'd have to talk to a surgeon, but apparently kidneys can be taken laproscopically.

I'm not asking for advice, I know that can't be done. But it's a helluva a pickle.

That is exactly the situation, ride the Alimta horse until it drops.

So, Lucy and I went to her regular three week appointment with the oncologist yesterday. The cranial MRI to evaluate the response to the radiation surgery showed a decrease in the size of the lesions, and evidence of necrosis. Happy news, that.

Lucy is still tolerating the Alimta, the lung cancer is stable, and we will just monitor the kidney growth. The next CT scan will be in August, we will have more definitive information then.

So, we take the good news when we can get it, and keep on keeping on.

Keytruda's sBLA PDUFA action date is October 2nd, so something should happen before or on that date. The FDA Oncologic Drugs Advisory Committee has scheduled meetings July 9th (Keytruda is not on the agenda, apparently) on September 9 (no agenda information). But that bureaucracy is a bit opaque to me, I could be missing something.

And I have heard nothing on an Opdivo submission, I've either missed something (possible, but unlikely) or Bristol Myer Squibb's apparent inaction is curious to me, with so much at stake.

And there's the nagging question for me about NCCN's apparent move to modify their guidelines to include Opdivo in 2nd line adeno NSCLC, whether anyone can confirm that and explain what that might mean in practical terms.

Well, the Alimta response has been disheartening, and has been discontinued.

As of this moment, Lucy is starting some palliative radiation to ease shortness of breath and perhaps coughing, her oncologist is also worried about vena cava syndrome, the tumor may be impinging on the vena cava.

Nivolumab has been approved, but the oncologist will not do it concurrent with radiation. Lucy is on Medicare through BCBS of Minnesota, but who's paying is a question I can't answer with any authority.

There has been some talk about 'sensitizing' the tumor with carboplatin/paclitaxel concurrent with radiation, we have another visit with the oncologist tomorrow.

This is starting to be a very critical time for us, we need some help from the big man upstairs.

Thank you all for your kind words and support

Lucy came home from the hospital yesterday afternoon, I thought a day or two more would be beneficial, but it’s what she wants, so………….

They have increased her steroid (decadron), which are effective at what they do (mainly decrease inflammation), but have the added benefit of interfering with blood sugar levels, so now blood sugar testing and another med get thrown into the mix. Crap.

She has had two radiation treatments (and two tattoos to assist in aiming the beams!), a further 13 are scheduled, one per day, last one August 24th. It should take a few weeks to see how effective the treatment is, but the hope is effective enough for them to consider her healthy enough for another round of chemo.

That’s as much as my cloudy crystal ball allows me to see.

Philly - I don't know if this is part of the GRACE charter, but it's info that may help someone, so here goes. Lucy is covered by Medicare, in particular we have a BCBS Minnesota Senior Gold policy with a drug plan - MedicareBlue RX. Our oncologist (the very nice Dr. Singh) is with Minnesota Oncology. She has people at her disposal to work on these type of things. In the midst of her saying it had been approved, I didn't think to ask, frankly I was so happy I didn't care, so I don't know the method involved. But I *think* it was the NCCN guideline change involving nivolumab that did it.

Dear Nan,

The familiar greeting terms are welcome in these parts. Thanks.

Warm regards.

Hi Philly!

You beat me to the punch.

So, Keytruda should be approved in a month (no guarantees, tho), but I'm unsure if PD1 expression testing will be required, last I read Merck was kind of cagey about that.

I wonder why it took BMS so long, the study ended months ago, but a January approval at the latest, it would seem. In squamous, it took the FDA less than a week, though.

Lucy has scans (CT and brain MRI) scheduled for the 11th, and a visit to the oncologist the 15th, which should also be her first infusion of Opdivo (nivolumab). Lucy wanted to wait for a while after radiation, and it's ultimately her call of course.

She's got a terrible cough (although it seems to generally be marginally better). She's on 8mg dexamethasone daily, it messes with her (and mine!) sleep schedule. Along with ER morphine twice daily and hydro for breakthrough pain.

But, I still have her, thank God, and she has stretches of good times. We hope to go to our lake home with the grandkids this weekend, that would be good for everybody. We've missed a lot of time up there (Northern Wisconsin).

13th Nivo, that's 6 months, congrats!

Lucy is currently in the hospital, and there will be a very important discussion around 8:30 AM CDT tomorrow, and there are three points I'm not clear about regarding Nivolumab.

1) Performance status and Nivolumab restrictions.

2) Supplemental Oxygen and Nivolumab.

3) Concurrent dexamethasone dosage

I need to decide how hard to advocate Nivolumab versus hospice, and ammo for my argument, if appropriate.

Desperate times.