A Cautionary Tale

This topic contains 26 replies, has 7 voices, and was last updated by  Lembird 3 years, 3 months ago.

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February 4, 2014 at 7:06 am  #1261967    

Lembird

I was living well with my indolent cancer but because I was fearful of the new insurance regs, and since it was not very invasive, that I would go ahead and have the prodecure done.

I went into Mayo on Dec 19 and had a microwave ablation done to a 1.3cm ggo. An outpatient procedure.
I was admitted into the hospital and told that even though the correct mfgs specs were used, that the ablation, which was expected to be less than 2 cm turned out to be 6 cm and I had a pneumothorax. I had 2 chest tubes inserted and 2 blood patches, the second one was successful on 12/24 so they sent me home. I did not see the infection from one of the tubes until I got home. .

From 12/24, I had increasing weakness. I developed a fever on 1/12 and saw my GP in town and he was concerned about chest tube site infection and possible pneumonia so I went for a chest xray and he put me on levoquin. The xray showed a pneumothorax 3cm at apex. I called Mayo and they asked me to come, which I did 1/15.

Had CT scan at Mayo which showed the pneumo unchanged but also infected fluid in pleural space.
They did TPA flushes and removed over 1000ccs of fluid. The cultures showed strep. They sent me home on Jan 18 with the pneumo unchanged and a small amount of fluid at base of lung and kept me on levoquin for 2 weeks. I had a chest xray on 1/21 and the pneumo was still there….no change.

I am stronger but have pain in the area of the ablation and I have some SOB on exertion. I am going to Mayo on 2/5 for a CT. I went from being a well person to now not knowing whether this BPF and infection will be my end. Do people ever recover fully from BPF and infection in pleura?

I am sending this to tell Dr West, he was right, I should have left well enough alone. I want to share this with the hope it will help someone else down the line.

Many blessings to all at Grace,
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

February 4, 2014 at 7:41 am  #1261970    
JimC Forum Moderator
JimC Forum Moderator

Thanks for sharing that, Lembird. I hope that you continue to improve and that this painful lesson becomes a distant memory.

It’s a perfect illustration of the point made in the GRACE faq on local treatments for metastatic lung cancer: http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metastatic-cancer-but-why-cant-it-just-all-be-surgically-removed-or-radiated/ As Dr. West says, although it is tempting to just get rid of every bit of cancer that can be seen, such interventions are not risk-free.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 4, 2014 at 1:13 pm  #1261982    

Lembird

Thanks Jim,
I do hope this just becomes a lesson and a memory so I can get back to my “A” game. Also hope it helps someone else to avoid the very painful lesson.

Be well,
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

February 4, 2014 at 8:24 pm  #1262001    
Dr West
Dr West

I don’t see or manage people with bronchopleural fistulas, so I can’t say what to expect.

I would have preferred to have been wrong and had you do very well, but I’m glad you can at least help illustrate that I’m not just being unnecessarily cautious recommending to let sleeping dogs lie.

-Dr. West

February 5, 2014 at 5:10 am  #1262011    

Lembird

Thanks Dr West. I will post what I hope will be my recovery as I try to get those dogs to lie back down.

Sincerely,
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

February 6, 2014 at 9:24 pm  #1262093    

laya d.

Lembird. . .

Wishing you a super-speedy recovery and hoping that this does become a really bad memory for you. I’m keeping you close. . .

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 7, 2014 at 9:55 am  #1262112    

Lembird

Thanks so much Laya, I really appreciate your good wishes for a super speedy recovery (I love the sound of that)
Latest update:
I went for a scan at Mayo on Weds and it showed I still have fluid and air in lung but….less.

No fever and have been off antibiotics for a week so this news is really the best I could hope for at this time.

I am walking a lot and as fast as I can to reexpand the lung and keep the scarring to a minimum as this heals. The hope and prayer is that as the ablation zone heals that the fistula will scar closed. No guarantee on that, of course, but the fact that I have less air and fluid is a good sign and good direction and I am so happy with that news.

I know it is a long shot to have this close on its own but I am working hard on it and praying on it and hoping this will close over time without having to face a terrible surgery.

I will post over time to continue to share this experience with Grace for the next person who is deciding whether or not to leave well enough alone.

Mayo will be following me by phone (since I am 4 hours away from the clinic) to document how I am feeling over time but, barring great pain or fever, I will not have another scan until August. My goal is to be back to climbing stairs and running with my doggy by then.

Blessings,
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

February 7, 2014 at 9:00 pm  #1262134    
catdander forum moderator
catdander forum moderator

Lembird, sorry I’ve not responded sooner but I want you to know I’ve kept you close since reading this Tuesday. I’m so glad things seem to be mending and your tenacity to heal yourself is heart warming. If you ever need to work out the lungs in a different way yoga, specifically breathing exercises are excellent.

You are wonderful to write this thread. I’ve added this thread to my bookmarks so to get the word out a good long time and we’ll make good come of it. You’re the best,
Janine

February 8, 2014 at 6:09 am  #1262146    

Lembird

Thank you Janine,
I really appreciate you using this information to let people know that some not very invasive treatments can become VERY invasive and even life threatening very quickly when something goes wrong.

I am so happy that some good may come from this experience.

I will post from time to time to keep you informed.

Thank you for all you do.
Lembird

Thanks for the yoga tip….I will try that.


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

March 30, 2014 at 7:56 pm  #1263012    

double trouble

Lembird, I am so sorry you have had such a rough time since you had what should have been a simple procedure. I see you haven’t posted in almost 2 months so I thought I would ask you for an update. I’m sorry I didn’t respond sooner, but I haven’t been on GRACE much either. Know that you are in my heart, and I am “shaking my fists at the universe” for you.

Debra

March 31, 2014 at 7:33 am  #1263022    

Lembird

Debra,

As you know from my other post….I am so very happy to hear from you.

I am doing better , gaining weight in ounces but have gained back 5 of the 8 lbs that I lost during this latest adventure. I had another infection but it responded to antibiotics only and I am still waiting to see my new pulmonologist to see where I am with this. The next scan, which should be on or about the 1st of May, will be telling. If all air and fluid is gone….perhaps this fistula has closed itself.
I am not as active as I was before this but I am getting more and more active every day with less and less pain. Since the initial shock, I am dealing with it ok now and I understand it will be what it will be and I refuse to waste a precious day worrying about it. I am grateful that I am able to get access to wonderful medical care and I trust that this will all work out the way it is supposed to. I guess this disease has made me pragmatic. I know you understand.

Thank you for updating all of us on your condition…it is truly so good to hear from you and, once again, you inspire us all.

I will update after seeing the pulmonologist and I will be looking for updates from you.

All blessings and good positive energy coming your way.

with love,
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

May 14, 2014 at 11:08 am  #1263751    

Lembird

Hi Everyone,

Just want to give you an interim update since I had a CT scan for oncology on this past Monday. I got a little preview of what is going on since my CT for radiology will be in August.

First the great news….all of my innumerable cancer “spots” are stable and the fistula appears to have closed itself since I have no more fluid or air in the lung.

Now the interesting, not so great, news…..since nothing ever seems to go in a straight line with this disease.

It appears that the ablation site has developed into an approx. 4cm cavitary lesion and has what could be dead tissue or fungus inside. I, of course, am hoping and praying it is just dead tissue.

So….the saga continues and I am not out of the woods…. yet. I asked my onc what happens if it is fungus and it doesn’t go away by August and she said I would be looking at surgery!

I will keep you informed while I go down this road that never had to be traveled. Still working hard on rehabilitation of the lung and feeling MUCH better although still not totally recovered from my MW ablation adventure.

All good wishes
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

May 14, 2014 at 1:50 pm  #1263754    

double trouble

Lembird!

I’m so delighted that you have posted again. I’m very happy that the fistula closed on its own like you hoped it would. And next to NED, STABLE is our favorite word!

As far as the cavitary lesion with fungus, I’ve had the same thing for months, yet with antibiotics I continue to improve and thrive. No one has mentioned surgery as an option but I’ve been pretty sick so I’m sure if they didn’t even want to do a bronchoscopy, surgery would have been out of the question. Is there not an antifungal they can put you on? I’m reminded of Dr. West’s advice to “let sleeping dogs lie.” I would have lots of questions and would seek a second opinion if surgery were recommended to me for a cavitary lesion with a fungus ball. Not telling you what to do, just saying what I would do. Perhaps one of the faculty will comment on that one.

I’m so happy that you are continuing to improve. I am keeping you in my thoughts. I know what you mean that good news is often followed by bad, but I think the big picture looks pretty good for both of us. Indolent BAC seems much easier to live with than more aggressive cancers. We continue to be blessed.

Much love,
Debra

May 14, 2014 at 6:36 pm  #1263759    
JimC Forum Moderator
JimC Forum Moderator

Hi Lembird,

It’s great to hear from you, and even better that you continue to improve. I don’t have the experience with this that Debra has, but I too would exercise caution :wink: before choosing surgery. I’m hoping that this resolves on its own, or possibly with antibiotics; perhaps something to discuss with your doctor.

Again, thanks for keeping your GRACE friends up-to-date!

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

May 14, 2014 at 7:33 pm  #1263764    
Dr West
Dr West

I can only corroborate that this is pretty uncharted territory in your situation — no real rules, and not much experience to turn to for expectations. I have a similar in a similar situation — a cavitary lesion with likely fungus inside it, though caused by conventionl chemo and radiation for stage III NSCLC. In this case, I sent him to see a surgeon and an infectious disease specialist, who both suggested against any intervention just yet — just watch and consider options down the road, especially with uncertainties about how his disease and prognosis will unfold over the coming months.

Not an answer, but just a way of saying “you’re not alone, and nobody has a great answer”.Perhaps that’s just cold comfort.

Good luck.

-Dr. West

May 15, 2014 at 7:58 am  #1263770    

marisa93

Lembird,

So good to hear from you and so happy to hear your news of stable!!!!!! I hope everything else resolves, take care!

Lisa


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

May 15, 2014 at 8:20 am  #1263771    

Lembird

Debra,

Thanks so much for posting and letting me know that you are not letting this get you down. You are right, we are blessed and I am grateful that I live a pretty “normal” life,,,,,considering.
I am in no hurry to have surgery….especially since I am still recovering from my last medically induced problem. So very happy you are hanging in there. God Bless.

Jim and Lisa,

I hear you loud and clear……I am in no hurry to have surgery so I will ask a lot of questions and get a couple of opinions before I do anything. Thank you for your advice about caution. I didn’t use that last time and that is why I am here now. I am getting better although……very slow. Be well.

Dr West,

Thank you for your answer, it does make it easier for me to take a wait and see attitude. Of course, I wish you had a remedy for me but the fact that nobody has a definitive answer as to how to treat this IS an answer. Right now, I will try to get stronger to fight this off and make my body less hospitable to fungal invasion.

Will keep you informed.

Be well,
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

May 15, 2014 at 9:27 am  #1263772    
catdander forum moderator
catdander forum moderator

Hi Lembird : )
So good to know you’re stable and feeling better all along. Invasion can certainly turn into an out of control spiral. D had surgery for biopsy tissue knowing he couldn’t remove complete pancoast tumor. He still has a lot of issue connected to the surgery not to mention the tumor and all the nerve damage from both. But he remains NED almost 2 years since treatment and you can’t beat that with all the stuff.

It’s so good to hear from everyone, their perspectives and understanding of how the system can work best to our advantage.

I hope you find a course that is easy on the body.
All best,
Janine

May 18, 2014 at 10:51 am  #1263891    

Lembird

Janine,

Thanks so much for your good wishes…..I will keep you informed. Like you said, it is good to hear about everyone’s journey with this terrible disease. It really is a physical and mental roller coaster. So happy that D is NED after 2 years, that is a good place to be.

All the best to you also.
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

August 9, 2014 at 7:04 am  #1265334    

Lembird

Hi Friends,

Well, I had my scan this week and my ggo and nodular foci are all either unchanged or not significantly changed since last scan in May.

The cavitary lesion caused by the microwave ablation which was 3.5 x 4 cm is now 2.2 x 3.2 cm and now no longer shows a ball of some sort but rather it now “demonstrates diffuse internal soft tissue attenuation.
Additionally, an inferior-medial consolidation with bronchial dilatation has also improved”

I am scheduled for another scan in 3 months and I am hopeful that no infection, bacterial or fungal, sets in.

I am beginning to get some of my energy back and am walking my dog 2 x per day, riding my bike almost daily and can do 4-5 flights of stairs without too much difficulty. I do not have all of my energy back but find I am able to get most of what I need to accomplish done before getting very tired and requiring 9-10 hours of sleep.

No fever, no coughing up anything, some mild SOB due to my asthma which is limiting but not debilitating.
I had a pulmonary function test which showed normal % saturation and air movement.

All in all, I am cautiously optimistic that I may be headed back to some degree of health.

With love and good wishes to all at GRACE.
Be well.
Lembird


NSCLC dx 11/09, surgery to remove RML 2/15/2010, pathology 2B Adenocarcinoma with BAC features. 3 tx Cisplatin and Alimta, 1 tx Carboplatin and Alimta. Some residual neuropathy in hands and feet. Small nodules and GGOs in all remaining lobes. Scans every three months…stable as of 11/4/11…very little growth in one nodule but
essentially stable as of 3/30/12, next scan in 6 months. Scan 9/12 stable, scan 4/13 stable. Scan on 11/4/13 showed a little growth in
nodule from 1 cm to 1.3 cm. Had MW ablation on 1.3 cm nodule in Dec 2013 and this caused a fistula and infected empyema. Jan 2014 had chest drained and sent home with fistula and pneumothorax. In May, CT scan showing that the fistula had closed itself and pneumothorax was resolved but had developed a cavitation with possible fungal center. CT scan in August 2014 showed the cavitation had gotten smaller but still question of fungus. Clinical looking good, tired but no fever and working on improving lost muscle mass. Scheduled for next CT scan in Nov. Scan Nov 4, all stable and cavitation still showing possible fungal involvement. Scan April 4, 2015, showing further consolidation of ablation site and other spots all stable — squinty changes. Good clinical, feeling stronger and gained 5 lbs. Next scan in November.
Scan Nov 2015 stable. Next scan scheduled for August 2016.

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