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

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

Hello, my name is Tom Norkunas, I'm just introducing myself and our situation. Glad to have found this site.

Here's our plight.

66 year old wife of 25 years with stage IV lung cancer, adenocarcinoma NSCLC. Her mother, father and one sister died from lung cancer, another sister and another brother from colon cancer, one brother from multiple myeloma. Another brother 6 years on from squamous cell lung cancer diagnosis. Two older sisters still OK, older brother still OK.
10/08/13 XRAY, pneumonia infiltrate
10/14 CT Scan
10/17 Lung specialist consult, Minnesota Lung Center. CT result, mass in right lung, plueral effusion.
10/24 Thoracentesis. 1 liter
10/30 Lung specialist consult. Cancer, adenocarcinoma, stage 4, oncologist referral, Minnesota Oncology.
11/1 CT scan of brain (ordered by oncologist). Hadn't considered possibility of THAT, anxiety skyrockets.
11/6 Initial consult with oncologist, brain clear, whew. Cancer not 'galloping', referral to surgeon to deal with infiltrate.
11/8 PET scan
11/11 Visit with surgeon, schedules VATS
11/14 Video assisted thoracoscopy with pleuradesis, biopsy. 2.5 liters. Waiting for genetic marker test results
11/25 Visit oncologist. PET scan shows no surprises. Still no genetic marker results. Argh. The results were supposed to be in by now!
12/4 CT scan, still no marker results. Argh. Getting upset. Some growth, but pleuradesis effective.
12/5 Marker results negative. 4 rounds of chemo (carboplatin, paclitaxel, bevacuzimab) ordered, enrolled in maintenance study - bevacuzimab v pemetrexed v bevacuzimab/pemetrexed combo.
12/9 1st chemo
12/12 shaved head, wig, er, cranial prosthesis.
12/16 Visit with oncologist, side effects tolerable, labs OK
12/18 Power port installed
12/30 Labs OK, 2nd chemo
1/17 CT scan
1/21 oncologist, labs good, CT scan shows shrinkage, 3rd chemo.
2/10 fourth chemo scheduled, maintenance study after that, then who knows?

Starting to be internet addict on lung cancer topic.

Thanks for listening,

Tom Norkunas

JimC
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom,

Welcome to GRACE. I'm sorry you have the need to be here, but I'm glad you've found this site. You will find a wealth of information and support here.

Good to hear that your wife's chemo has been tolerable with good labs and a first scan that shows shrinkage. I hope that continues for a long time.

Please let us know when you have questions and we will try to help.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobradinsky
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom

So very sorry to learn about your wife. Just to let you know you have found the right site. The moderators and docs at Grace are the best and have been of tremendous assistance to many patients and caregivers. If you must be an addict Grace is a wonderful addiction. From a fellow junkie.

Bob

laya d.
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom:

Welcome to GRACE, and I'm very sorry to read about your wife's diagnosis. I hope that she fairs well with her treatment, and that her disease remains in check for a long long long time.

Laya

marisa93
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom and a hello to your wife as well. I am sorry that you have the need to find us but want to welcome you to GRACE. It was a blessing for me to find this site when my husband was diagnosed! I wish you and your wife the best and that her upcoming chemo goes well. Please keep us updated if you can.

Lisa

biggerten
Reply To: New forum member from the Twin Cities in Minnesota.

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.

JimC
Reply To: New forum member from the Twin Cities in Minnesota.

Great news, Tom! Thanks for the good update on your wife. And best wishes for a good response to maintenance Avastin.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: New forum member from the Twin Cities in Minnesota.

Thanks for the update, and good luck to your wife. I think the ECOG 5508 trial is very important, as the question of "what is the best maintenance therapy?" remains an open question. Thanks for helping to answer it. All of the arms of the trial are very appropriate treatment options, which is why we can't just guess what should be the right one among them (if there turns out to be any differences at all).

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom, So good to know your wife is responding to treatment! I thank those who are testing these possibilities of optional treatments. My husband wouldn't have the options since he has squamous but so glad to get more data on best treatments for those with adeno.

Best of luck to your wife,
Janine

shy one
Reply To: New forum member from the Twin Cities in Minnesota.

Congratulations on being so supportive of your wife and to both of you for your participation in a clinical trial. And I, like all the others, am very sorry you have to go through this. While I am not eligible for a clinical trial, I have been going through NSCLC since 2009, and never expected to last this long or feel this well. As I am 10 years older than your wife, it seems pretty miraculous to me, and I wish her the same good fortune in survivorship. She obviously has the same good fortune as I have in a supportive spouse. Best wishes to both of you.
Nan

biggerten
Reply To: New forum member from the Twin Cities in Minnesota.

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.

JimC
Reply To: New forum member from the Twin Cities in Minnesota.

Thanks for updating , Tom. Great news on Lucy's scan!!!

We all second your thought, wishing that treatment advances would show up the day before yesterday!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: New forum member from the Twin Cities in Minnesota.

Yes, congratulations on the stability she's seeing now. That's great, and it sounds like she's tolerating it quite well (a bit of a bloody nose is VERY common on Avastin).

Good luck.
-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

biggerten
Reply To: New forum member from the Twin Cities in Minnesota.

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.

JimC
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom,

Congratulations and thanks for the very positive update! It sounds as though the report's use of the term "mixed result" is CYA just because there's the possibility of an increase in the size of a nodule. I know that it's easier to say "don't worry" than it is to do it, but please try. It's a great scan result.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: New forum member from the Twin Cities in Minnesota.

Here's a bit of information about mixed responses, which are not rare:

http://cancergrace.org/lung/tag/mixed-response/

As for the AST elevation, I can't say exactly what that represents, but I would really caution against "borrowing trouble". That's a very minimal elevation above the normal range. Do you know what can cause a minor elevation in the "transaminases", ALT and AST? Anything. Minor elevations are very common, so much so that it's a very poor use of mental energy to worry that every little elevation of these liver function tests (LFTs) represents liver metastases (which don't necessarily cause an elevation in LFTs). Yes, this little bump in the AST might be caused by Tylenol or alcohol, but the list of potential causes is so long that it's ridiculous, probably including things like eating a questionable mushroom, getting the hiccups for a few minutes, etc. In the world of signal and noise, that's noise.

My father has said that he's convinced that the sun only comes up every morning because he worries about it the night before. Don't be like that.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

biggerten
Reply To: New forum member from the Twin Cities in Minnesota.

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

catdander
Reply To: New forum member from the Twin Cities in Minnesota.

Hi Tom,
Ah the education here isn't a subject of choice indeed. I'm glad Lucy had a good scan and hope she continues to do well. A cough can be really debilitating. Has she tried home remedies like sipping water, taking logenes, hot toddies? It's not a sure thing but for some coughs they work wonders. Too there are these suggestions, http://cancergrace.org/cancer-treatments/2009/05/09/managing-cough/

All best!
Janine

biggerten
Reply To: New forum member from the Twin Cities in Minnesota.

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

Dr West
Reply To: New forum member from the Twin Cities in Minnesota.

Yes, ACE inhibitors are notorious for their potential to cause a dry cough. They're otherwise very good blood pressure drugs, but the association with cough is very clear. I hope it's something that easily reversible.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

biggerten
Another running update on my

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

JimC
Great scan results, Tom!

Great scan results, Tom! Thanks for sharing your good news, and I hope the proteinuria clears up soon so that your wife can resume treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Thanks for the follow-up.

Thanks for the follow-up. Proteinuria is a common cumulative side effect of Avastin, so it's not that surprising to see this as an issue when patients are on Avastin for a long while.

Good luck with her ongoing favorable results.
-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

biggerten
I don't have as much to

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.

JimC
Tom,

Tom,

Great to hear that your wife is stable, and I hope that you can squeeze more benefit from bevacizumab (Avastin).

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Well, I'm happy things remain

Well, I'm happy things remain more or less stable at this time. I hope you don't need a next plan anytime soon, but there are certainly a range of clinical trials and perhaps some new treatment options in the next year.

The European regulatory agency, EMEA, just approved nintedinib in combination with docetaxel as second line therapy, so perhaps that will also become an option in the US in the next year. Of course, everyone's also watching the work with immune checkpoint inhibitors and hoping to see one or more become commercially available as a lung cancer treatment in the next year or so.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

biggerten
Well, it's the end of the

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.

JimC
Tom,

Tom,

I'm glad that Lucy was able to get a good period of stability from bevacizumab, and I hope that her side effect symptoms clear up very quickly.

Good luck with the trial and the new oncologist. We look forward to many more good status updates from you.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

biggerten
Ouch. Lucy has been

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.

catdander
Oh Tom I'm so sorry to hear

Oh Tom I'm so sorry to hear this. Look forward to hearing about the new plan and hope this is a bump in a much longer road ahead.

I'm keeping you and Lucy in my thoughts,
Janine

karenb
I feel you and Lucy's pain. I

I feel you and Lucy's pain. I too was rejected from 2 studies. Chin up and move forward is my mantra. I am currently doing Carbopiatin/Alimta and have the first CAT scan next week. Lots of stress but hang in there...I will be thinking of you both.

JimC
Tom,

Tom,

I'm sorry to hear of this setback. I'm hoping for a good plan put in place and that, as Janine said, this is just a small bump in a long road.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

biggerten
OK, time for another update,

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.

phillydaughter
None of my business but, why

None of my business but, why is your doc not asking requesting nivolumab from BMS. BMS seems to be approving it for so many other adeno patients at no cost.
Or am I wrong?

phillydaughter
Tom,

Tom,
Sorry perhaps I misunderstood. t's great that the alimta is continuing to work for her. Guessing that is why they are exhausting that option before considering nivo.
Is that your understanding?

biggerten
That is exactly the situation

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

biggerten
So, Lucy and I went to her

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.

biggerten
Well, the Alimta response has

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.

JimC
Hi Tom,

Hi Tom,

We will keep you and Lucy in our thoughts, with hopes that the radiation eases her symptoms and that the next regimen works well for her.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

shy one
Dear Tom:

Dear Tom:
I'm using this friendly salutation because you and Lucy are like friends to me, even though we've never spoken. I've been following you silently for a long time now, and my heart goes out to both of you. This disease is a son-of-a-gun with its ups and downs, but as you know, there is usually an "up" that follows the "downs." And that's what I'm hoping you see in short order. Lucy was diagnosed almost a year before I was, hence my great interest in following your saga and my fondest wishes for her and you.
Nan

catdander
Hi Tom, I'm so sorry to hear

Hi Tom, I'm so sorry to hear you and Lucy are going through this. Cancer is horrible and truly the emperor of all maladies. Like Nan said, I'm sure this is just a bump in the road and she will be feeling good again in no time. In the meantime, keep us up to date.
I've been out of town and out of cell access, yes that still exists at least in the beautiful hill country of Texas.
You and especially Lucy are in my thoughts,
Janine

biggerten
Thank you all for your kind

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.

biggerten
Dear Nan,

Dear Nan,

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

Warm regards.

shy one
Dear Tom:

Dear Tom:
I hope you were pleasantly surprised to learn that you were now married to a woman with tats. I was surprised to get tattoos prior to my radiation (5 days a week for 5 consecutive weeks in 2009, and the easiest part of my treatment; I hope it is for Lucy, too). I found it important to nurture a sense of humor; it helped to have a husband with a wicked and irreverent sense of humor.
Best to you both, Nan

phillydaughter
Hi Tom,

Hi Tom,
I was away for a few days but wanted to let u know that I was reading through your recent posts and am sending prayers and good wishes your way for healing and better days.
What a relief that the nivolumab was approved.
Please continue to keep us posted.
We are all in this together.

phillydaughter
The FDA accepts Bristol-Myers

The FDA accepts Bristol-Myers Squibb's (BMY +2.3%) supplemental Biologics License Application (sBLA) under Priority Review seeking approval for the use of Opdivo (nivolumab) in patients with non-squamous (NSQ) non-small cell lung cancer (NSCLC). The projected FDA action date is January 2, 2016.

Tom - how is Lucy?
My mom had her 13th nivo today along with a CT scan. Waiting for results - will take a few days.

biggerten
Hi Philly!

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!

karenb
Hi Tom,

Hi Tom,

I have not been over here visiting for a long time....met some friends over at Inspire and hung out there. The nivolumab link came up over there so I will post it here. I did 6 rounds of Carbo/Alimta, then 6 Alimta maintenance. My scan last week showed a slight progression in my primary (lung) with all mets stable. My oncologist decided now was the time to make a change before more progression shows. She got Nivolumab approved for me (adeno) and I start with Lucy on Sept. 15th. Hoping Lucy & I do well and everything shrinks for us!!
Praying you two get to the lake house this weekend and try to forget about cancer for a weekend.

Karen

WHO will win the Adeno race for Immunotherapy
http://seekingalpha.com/news/2759026-fda -accepts-bristol-myers-sbla-for-expanded -use-of-opdivo-in-lung-cancer http://www.wfmz.com/lifestyle/Health-Bea t/Health-Beat-Keytruda-lung/34532566

catdander
Karen, Tom and Lucy,

Karen, Tom and Lucy,

I hope hope hope that you both do well on the new drug. Karen I'm so glad you thought to update us, I've thought about you and wished for the best. So keep us posted.

You all stay in my thoughts, wishes and hopes for the best.

Janine

P.S. I want to add that my husband and I just got home from a wonderful concert with the band X minus their guitar player, Billy Zoom. He is in treatment for bladder cancer. It was bitter sweet knowing the band is quite close knit and the diagnosis came days before the tour began. Much of the money from the tour is going to Zoom. We all know how quickly the bills add up even with insurance. I can only imagine how difficult it's been to replace him while he's in treatment.
And so it goes.

karenb
Thank you Janine for the kind

Thank you Janine for the kind words! I am very excited to get off chemo and start this new wonder drug.
Tom, please keep me updated on how Lucy does with the infusion. There is a Nivolumab club on Inspire and I have learned what to expect with this treatment.

Karen

biggerten
Lucy is currently in the

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.

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