Final Update 12/31/12 - 1248626

cards7up
Posts:636

Hi all, I've been helping my neighbor who was dx with stage IV NSCLC adeno in July. She had one large tumor in the right lung pressing on the superior vena cava and a few nodules in the left lung. Radiation was done 10x, but at #3 she developed pneumonia and almost died. She was in the hospital and then rehab for about 6 weeks total and bounced back and came home. This was not radiation pneumonitis and she did finish the radiation and had some shrinkage. She was supposed to start chemo one week ago this past Monday. But instead I brought her to the ER for extreme shortness of breath. When she'd get up to move, her levels were dropping into the 70's and she was on oxygen at home but only level 2. I had raised it to 2.5 to see if it helped, but it didn't. So to the ER we went. It's taken a week of being in the hospital to find out that she is having lymphatic spread in the left lung. They have her on level 7-8 now for oxygen and have started morphine to help with her breathing. This is helping and she's due to start chemo tomorrow of pemetrexed only. Her levels continue to go up and down when she moves and is never off the oxygen. From what I've read online, this spread is extreme and prognosis is grim-2-3 months. Is this fairly accurate? Will the chemo help at all? She was a lifetime smoker so I realize that COPD is involved also. This is also the first time I've come across this at all in over 3 years of dealing with LC. Question #2: Stage IV adeno dx stage I originally. First line tx then NED. Small recurrence, not sure of time frame was put on Tarceva. Now on Tarceva for 5 years and NED for many years. Starting to get side effect of tiredness which was not suffered before. Onc has recommended stopping Tarceva but she is afraid if she does, she'll have a recurrence. How likely is it that this would be the case? Sorry, wish I had more info on this second one, but I'm working on it. Thanks as always. Take care, Judy

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Reply # - October 3, 2012, 08:16 PM

Dr West
Posts: 4735

Lymphangitic spread is usually a very poor prognosis of weeks to months, but not always. I have a patient I see in my clinic tomorrow who had a sensational response to carboplatin/Alimta (pemetrexed), followed by Alimta maintenance, with nearly complete resolution of her cancer. Lymphangitic spread is an unfavorable finding, but it's definitely not as simple a situation as it being completely resistant to treatment. Still, it's fair to say that it's more likely that things will decline rather than improve dramatically.

If someone has stage IV NSCLC that has responded very well to an oral EGFR inhibitor like Tarceva (erlotinib), you'd generally expect it to return in weeks to months after stopping it. There is certainly some variability, and perhaps the area of limited/small recurrence actually wasn't cancer but a pneumonia or enlarged lymph node from a virus or something, but I don't think we could expect that someone with a true stage IV cancer would have it eradicated permanently on Tarceva and then be able to come off of it and be effectively cured.

-Dr. West

Reply # - October 4, 2012, 04:59 AM

cards7up
Posts: 636

Thanks for the info on lymphatic spread. Though she seems ok, she has been declining somewhat especially having to be on higher oxygen level. We'll see how she responds to alimta as they won't combo her with carbo. As for the Tarceva user. She had complete lung removed in 2005 and then in 2006 she had recurrence in some lymph nodes. She's been on Tarceva ever since and is afraid if she stops she'll have another recurrence. I was just wondering if stopping Tarceva this far out, almost 6 years would she be likely to have a recurrence since she's been NED for many years? I understand the nodes were most likely an infection as she didn't say they'd been biopsied just lit up on a PET. Take care, Judy

Reply # - October 4, 2012, 10:05 AM

catdander
Posts:

Hi Judy, I hope you are doing well. I'm so sorry your friend is in such a difficult position. However, she's lucky to have you!
I'm sure you have but just in case have you read the blog posts from a couple of months ago about keeping tarceva and adding alimta?
http://cancergrace.org/lung/2012/08/05/acquired-resistance-faq/
or are you asking if she should continue as is and check later to see if the hot spots were infection and go away.

This is off base in that we're talking about 2 different treatments but D had a what looked like progression on gemzar, 5 or 6 mm, but stayed the course. The next scan showed shrinkage. I say that because it could be infection like D's could be the read of the scan.

Take care,
Janine

Reply # - October 4, 2012, 10:52 AM

cards7up
Posts: 636

Thanks Janine for your response. There are two different people and cases involved here. As far as the second one, she's been on Tarceva for over 5 years and is NED. Dr. West stated she may not even have been a stage IV. The recurrence in the lymph nodes could've been an infection.
Take care, Judy

Reply # - October 10, 2012, 01:50 PM

laya d.
Posts: 714

Hi Judy:

I wish both of your friends well. . .and hope that you yourself are doing well. . .

Laya

Reply # - December 14, 2012, 05:08 AM

aunttootsie001
Posts: 324

Judy, you are such a wonderful neighbor and friend! That was obvious by all the support you have given me and many others! I wish your friends well and yes they are very lucky to have you as a friend!

Reply # - December 14, 2012, 11:21 AM

cards7up
Posts: 636

UPDATE: Two months ago I really didn't think my neighbor would last, but she's been thru 4 treatments of carbo/alimta plus more radiation to a spot on her hip. They decided to give her the combo after all. She just had her 4th last Monday. They listened to her lungs and said they didn't sound good at all. She is constantly SOB and coughing. Oxygen at home level 4. They're going to continue on with chemo as her last two were reduced due to counts and she's had blood transfusions twice, yesterday being the second time. Then they're talking about maintenance alimta. She doesn't realize the severity of her situation and that she's getting treatment to buy her more time. I know she'll be here for Christmas and will have a scan on the 27th, then depending on the scan-more chemo on the 31st. I'd say her QOL is ok as she lives alone. Personally, I feel she's going downhill just not at a fast pace.There are a few of us that help her out and she also has a visiting nurse to flush the PICC and bathing. As for myself, I go back next month and not sure when next scan is. Wishing all a very Happy Holiday and the best of the New Year!
Take care, Judy

Reply # - December 14, 2012, 01:34 PM

catdander
Posts:

Judy, it's good to get an update on you and so happy you are alright and more than likely enjoying grandchildren.
I'm sorry your neighbor is going downhill. She lucky to have her friends look in on her.

Reply # - December 27, 2012, 04:19 PM

cards7up
Posts: 636

UPDATE: My neighbor had a scheduled follow-up CT scan today. I called her onc to see if he could see her today as her coughing and SOB was getting really bad and we'd be there anyway. So they do her labs and the PA comes in and then goes to get onc. They both listened to her lungs and brought her to the ER.
Her breathing was really bad, 70's. They had to BI-PAP her to get the oxygen levels back up. They've admitted her to the ICU. I couldn't get an answer on what the CT scan showed, but her white counts were off. For now they're treating her as if she has pneumonia. Though the doctor did say he thought it was more likely the cancer. I'm hoping to get more info tomorrow but just wondered if this seems like she's heading towards the end of her journey. Never thought I'd ask this. Thanks as always.
Take care, Judy

Reply # - December 27, 2012, 10:23 PM

Dr West
Posts: 4735

It's not uncommon to have someone experience deterioration and not be sure whether that is from the cancer, some reversible cause like pneumonia, or perhaps a combination of cancer and non-cancer causes. They can often look very similar or identical in terms of how a patient looks and feels, and often in what the scans show. In such cases, we typically try to treat any reversible potential cause, like pneumonia, and then just see whether a person happens to respond. So I think it's very understandable that we might suspect it's the underlying cancer but want to give the patient the benefit of the doubt and treat any reversible potential explanation for the overall picture.

I'm sorry you and she are facing this. I hope she happens to show some meaningful improvement with antibiotics and other supportive care.

-Dr. West

Reply # - December 28, 2012, 09:00 AM

catdander
Posts:

Judy, I'm so sorry she and you are going through this. I hope she is more comfortable.

Keep us posted and I continue to keep you in my thoughts,
Janine

Reply # - December 28, 2012, 09:31 AM

aunttootsie001
Posts: 324

Judy I sure hope you were able to enjoy your Christmas with so much on your plate! Praying both your friends bounce back! This is a very bad time of year to have to go thru this! Wishing you a Happier New Year!

Reply # - December 28, 2012, 02:17 PM

cards7up
Posts: 636

Today a pulmonary doctor came in and talked to her about putting a "balloon" in her chest. Her words,not mine as I wasn't there. My thoughts were it sounds like the cancer has grown and is pressing on something in the chest that is causing the SOB and coughing. It was originally pressing on the SVC. She'd had radiation and was doing fine until recently. I was thinking they were talking about a stent.
Any thoughts? Thanks and take care, Judy

Reply # - December 28, 2012, 05:12 PM

cards7up
Posts: 636

Dr. West, would the IABP be used in lung cancer and why? I tend to believe that their explanation was using the ballon as an example as my neighbor has a hard time understanding things. I'll find out tomorrow.
Thanks for your reply. Take care, Judy

Reply # - December 28, 2012, 08:24 PM

Dr West
Posts: 4735

No, an IABP wouldn't be used as a treatment for lung cancer. It's a treatment for severe heart failure, so the only reason I can see for an IABP in someone with lung cancer is that they are treating heart failure, and the person just incidentally has lung cancer.

It sounds like it would be far more fruitful to learn more from your friend or, better yet, directly from someone on her medical team, because all I can do is make wild guesses based on very little information.

-Dr. West

Reply # - December 31, 2012, 06:21 PM

cards7up
Posts: 636

It was a stent and they were going to evaluate today whether it could be done or not but.....
she passed away this afternoon. She progressed through her chemo. Her CT scan was done Thursday when she was admitted to ICU and compared to one from last month. She had alot of progession. I got to see her this morning, but she was very sedated as she couldn't breath. RIP Sue!
Take care, Judy

Reply # - December 31, 2012, 11:01 PM

Jazz
Posts: 279

Judy,

I'm sorry for the loss of your friend. What a wonderful friend you are. Best wishes for the new year to you.

Jazz

Reply # - January 1, 2013, 02:17 PM

aunttootsie001
Posts: 324

Judy, you poor Dear! So sorry you had to go thru that! sue was so very Luck to have you there for her! God Bless you and I hope you can concentrate on a better New Year!

Reply # - January 1, 2013, 04:17 PM

laya d.
Posts: 714

Oh Judy. . .I'm so sorry about your friend. This dreaded disease is just relentless. I'm glad that you were able to spend a few quiet moments with Sue before she passed on. You are a wonderful friend.

Laya

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