PLS HELP 28 yo social smoker NSCLC

plungersuperhero · New User Joined: 30 Nov 2007 Posts: 5

My husband was diagnosed with stage 3b NSCLC/ adenocarcinoma in august 07 at the age of 27

He was healthy excepth that he got tired easily and had this persistent cough.

So anyway he went thru 7 weeks of chemo(cisplatin + epotoside) and radiation therapy.

At the end of the 7 weeks of gruelling treatment, doctors said he s looking good. Seems like the tumor had shrunk dramatically and we were scheduled for a follow up a month later.

2 things happened meanwhile

(1) massive blood clot on his leg (took lovenox + cumudin (warafin))
(2) he had a lump on his neck it was small and insignificant at first a couple weeks later it had gotten bigger

Fast forward and he did his biopsy and pet/ct scan.

Results bad.

primary tumor gone but new ones found on lymph nodes and at wind pipe (sub caranial).

physically he seems healthy and goes to work and all.

according to doctor he has 6 months without treatment and the focus now is not to cure him but more on prolonging his life and palliative care

it is remarkable that the cancer had returned even before the one month mark.

what is ur take on this. please help. we've only been married for a year and a half and he just turned 28 this september.

right now he doesnt want to see the doctors face to face or get treatment becos we just recv the new yday.

pls help if there is hope for him....if there is a hospital out there tt has been known to be able to turn things around. what are his options. any suggestions for medications that i can mention to the doctors.

i appreciate all the help i can get. thank you for taking the time to read this.

brainman

plungersuperhero, I am very sorry about your husband's cancer. And he is sooo young!!! Cancer is so unfair.

I am not sure about how the staging of lung cancer goes. Have the redefined it as a stage 4 yet? Regardless, since it has recurred so quickly, it does sound like it is a very aggressive cancer.

Is he being treated at a major oncology research hospital? If not, he showed probably ask his medical team for a referral to one that specializes in his type of cancer. You might want to check the NCI's web site at http://cancer.org to see if they are sponsoring any trials that your husband will qualify for.

You and your husband are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1138

Welcome to this community, but I am so very sorry to read this news. I see younger and younger people being diagnosed with this disease, many of them have never smoked.

There are many more treatments available, although it does appear that his is very aggressive. On the plus-side (if there can be a plus in the world of lung cancer) sometimes more aggressive types of lc tend to respond better to chemotherapy. If he can handle this, there are many more chemo agents that can be used for your husband such as Taxol, Taxotere, Carboplatin, Tarceva, Alimta, Gemzar, Navelbine, Etoposide, Irinotecan. Newer agents should be on the way within a year or so. Especially if they get fast-tracked approval by the FDA. My husband was stage IV from the start and he went through an unheard of amount of chemotherapy of a "palliative" nature. Also had some radiation. His never left the chest area and was also in the subcarinal area of the mediastinum. He never was cancer free during his fight. He lived 2 1/2 years while undergoing constant treatment. The one time he was off treatment his cancer grew back like wildfire. His quality of life was fairly decent and we were glad for the additional time.

I think your husband is still a 3b with recurrence. It's a pretty moot point though and the doctor's are being honest with you. Make sure that your doctors are willing to be as aggressive with his treatment as your husband wants them to be. If he wants to continue to fight, make sure they are on board with his decision.

Otherwise, the best Cancer Center for Lung cancer is M.D. Anderson. Sloan-Kettering, Dana Farber, Swedish Cancer Inst. are all good too -- there are many in the U.S. Don't fall into the Cancer Treatment Centers of America trap -- they have slick commercials, but read their fine print. They may have a good track record because they exclude many people that real major cancer centers take and treat. You can get a second opinion from most of the centers on the link that Brainman gave you and they will coordinate your husband's treatment with his local oncologist.

My heart goes out to both of you as you continue on this very scary and oh so wrong journey with lung cancer. Take it day by day, but you will need to be a strong advocate for your husband and it's hard being so young. My thoughts are with you. Keep us posted.

PBJ

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

Sorry to hear about your husband. Please do consider getting second opinions, there should be clinical trials available as well.

best
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

plungersuperhero · New User Joined: 30 Nov 2007 Posts: 5

Thank you so much for your replies guys. I really appreciate all of you taking the time to reply and thank you so much for your thoughts and prayers.

He was diagnosed and treated at olathe medical centre (cancer care). Right now he still refuses to see the doctor or make some kind of decision on what it is he wants to do. Sigh.

Just really afraid that if he keeps delaying it and waiting it out it might be too late when he finally decides to get help.

pbj thank you so much for sharing your experience. it is comforting to know that there are ppl out there who went thru the same experience and actually care enough to share what they want thru.

Meanwhile we can only wait it out till he finally decides what it is he wants. I can only remind him daily of how important it is to decide what it is he wants asap. Feel really helpless. Not only do i have to deal with my husband having cancer but there is also anxious in laws to cope with.

Sigh. Hard times. It will all worth it if he gets well.

Qn

Does any one know of any good cancer treatment centres in kansas or missouri based ?

Is there someone out there who has had cancer and felt like they didnt want treatment? Just wondering what you were thinking and what was the turning point that convinced you to seek treatment or get a second opinion?

Thanks in advance for you ur replies.

brainman

Kansas City and St Louis both have very good hospitals with excellent oncologist on staff. In Kansas City, check out The University of Kansas Medical Center. In St Louis, check out Barnes-Jewish Hospital.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

plungersuperhero · New User Joined: 30 Nov 2007 Posts: 5

my husband finally decided to go see the doctor. i was told by the nurse that it had spread to the lymph nodes on the the neck and at the centre of the chest region. Yesterday when we spoke to the doctor he also highlighted that there seems to be activity at the abdomen and pelvic region. OMG!

he's plan for him is for him to go on carboplation and taxol. He also wants him to go on avastin as well despite knowing that avastin is know to cause bleeding in some patients and that my husband is on warafin/ cumidin (blood thinners) which already increases the probability of hemmorhage. Not sure if this is a good idea. And he is scheduled to recv treatments every 3 weeks. alongside with that they have prescribed steroid type med to be taken prior to treatment and something for his constipation and morphine for pain(which may cause constipation).

i dunno. i read abt ppl who have fought hard and in the end died. i am just really scared. i dont want my husband to die but it s just a very possible reality and it s hard.

anyway i mentioned tarceva to the doctor and he said that cld be a possibility and he wld get the patho lab to do a test to see if the cancer has a certain mutation. but he also mentioned that it can only be used as a second line of treatment.

what does second line mean? he went for the first round of treatment for 7 solid weeks chemo and radiation. and now he s going to start on another regimen next week. so what is second line really?

ok i m rambling.

do share your thoughts and opinions, i really appreciate it. thank you

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1138

Many hugs to you for the trials you and your husband are going through right now.

There are XXX cycles in a "round" of chemo. Each "round" of chemo constitutes a "line".

Sounds like the taxol/carbo/avastin combo will be his second "line" of treatment. Avastin has become a common addition to this mix. If there was a risk of bleeding, he would not be giving it to him. (Or let's hope not!!)

As for the tests, he's going to check to see if he has the EGFR gene mutation, which would respond to a daily pill called Tarceva. There must be tumor material available from a biopsy to do this test. My husband did Tarceva as third line therapy, so you can mix-up the order any way you choose as long as the insurance is on board.

Of course you are rambling and that is perfectly alright! You feel free to come here and ramble anytime you please. You have to have a "safe place" to vent your own feelings while staying strong on the homefront for your husband. I'm just so sorry that people so very young have to encounter this huge battle.

Are you also aware that your husband qualifies for Social Security disability benefits? Please get that into motion, because it takes 6 mos to start receiving payments.

Sincere thoughts and prayers for you both,
PBJ

plungersuperhero · New User Joined: 30 Nov 2007 Posts: 5

Thanks Pbj for explaining all that stuff to me and always responding and providing some clarity. I appreciate it a lot.

So we were at M D Anderson earlier this week. Doc looked at his mom at asked what is she here for and what does she want? She said a second opinion. Doc said it take time for them to digest all the info sent to them.

On top of that, on the day of the appt my husband was in excruciating pain...his back was hurting like crazy. Unfortunately we had forgotten his meds and we told the doc if he cld get a precription from him. He said he'll work on it. In the end he sent my husband to ER and ER did a bunch of bloodwork and MRI on the spine. Fortunately they did not find anything abnormal. Finally 6-8 hours later he got some pain medication and was later sent home. We spent 12 hours in the hospital. Doc at ER said it is possibly his lymph nodes.

My mother in law was anxious and just did not trust what the local hospital here was doing for my husband. She just wanted to feel better that she went to MD Anderson. My hope was just the possibility that they had altenative forms of medication/ treatment plans for him.

Next day doc called to say the local doctor is right on track (something which i have nvr doubted) and to continue with prescribed treatment plan.

What a waste of precious time, having to delay my husbands chemo. Sigh.

So he starts his chemo again next week. Once evry three weeks.

He's been complaining of back pain and stomach pains (according to him it feels like pain in the intestines). Sometimes bearable ..sometimes not so much. This is becoming more frequent. He s been prescribed hydromorphine (or something similar) and hydrocodone for breakthrough pain.

Just worried abt the increase pain that he is experiencing and if starting chemo will deteriorate his health. He is generall okay most of the time but pain can just randomly hit him unexplainably. Apart from getting his medications and giving him a heat pack to soothe some of the pain. I just wish i knew what else i can do for him to ease the pain? I also wish if someone can share with me what else to expect in the coming months?

Doc havent said anything abt the pathology test to find out if Tarceva will work on him. Will have to check back with him on that.

Just keeping anyone interested posted. Also just trying to let it all out and you never know maybe someone out there has some knowledge to share or if sharing my husband's journey can help others in any way.

Thank you for having this forum. Hopefully Jay gets better and happy holidays everyone.

plungersuperhero · New User Joined: 30 Nov 2007 Posts: 5

My husband has had difficulty swallowing for over a mth now. Just two weeks he started having problems bringing down fluids. He was no longer able to drink his soups anymore.

They then did barium swallow tast and also put a scope down his esophagus and found 2 deep ulcers...he was sent home with carafate to hopefully heal the ulcers and they diagnosed him with esophagitis and acid reflux disease.

Then last monday he just started coughing violently and was continously spitting...non-stop...something was wrong...he then said he thinks water is entering his lungs when he tries to swallow.

Called his oncolgists office...we went back and forth on the phone.At first they suggested giving him stronger pain medication, then something to soothe the cough....after more persistence...they managed to set up a another swallowing test but it can only be done 2 days later.....nurse suggested sending him to er...

Went to er....he was admitted and another barium swallow test ordered...this time they found that when he coughed the fluids were sputtering out.

They later discovered that he has a tracheoesophageal fistula. A stent was deployed...but it later migrated upwards the very next day. Discovered after an xray. Wider stent deployed just this Monday and it seems like it hasnt moved...but he still has a lot of spit and mucous but no frequent violent coughing..

Now what? Please help...not sure quite what to do or what to expect...it is always a situation of wait and see....

Technically after the stent placement...he should be able to swallow fluids after 48 hours and that hasnt happened yet.

He hasnt eaten anything solid in a month and nothing to drink in over a week....

We dont know if it was radiatin (last round in oct 07)/ avastin (1% of patients have TEF) / the acid reflux disease or esophagitis that caused the fistula.

But in any case they will have to stop using avastin as part of his chemo regiment....

So what now? any suggestions as to where to gofrom here with chemo and what to do abt his tracheoesophegal fistula.....

HELP! HELP!

pjean · Regular Joined: 12 Mar 2007 Posts: 25 Location: minnesota

My fiance,at the age of 36 was diagnosed march of 2007 and has been taking Tarveca,he has 20 brain tumors 4 were treated with gamma knife radiation. Words can express what we go thru.I tell myself everyday that miracles happen(thats what we need) people recover from things that you could'nt even make up so just keep believing. We are WAY to young to be going thru this.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1138

Plunger,

Oh my! I'm so very sorry that you and your husband have jumped on a new merry-go-round. This sounds awful.

I suggest that you ask these questions to Dr. West, an oncologist with a specialty in lung cancer at Onctalk.com. He answers questions about once per day and is a great person.

I hope your husband can get some resolution to this problem and he can relax a bit from the pain.

Radiation can do some pretty ugly things to the esophagus.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

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