It's back, advice needed

Hi folks,

I'm Stage III A Squamous with advanced local lung cancer in my upper right lobe. I was diagnosed April 2008 and finished treatment in mid-October (33 radiation sessions, chemo Cisplatin and Vinoralbine).

To make a long story short, I haven't had any treatment since October 2008. I've had numerous CT scans and other tests since and the docs didn't know whether what they were seeing was scar tissue or cancer. Finally, I had another scope and CT scan that showed my tumor never was destroyed, the treatment failed and I have a tumor that is again now 7 cm x 5 cm. So.

It's what? June 12 and it took the Ontario Canada health system that long to figure out what was going on with me. Eight months since treatment stopped.

Anyway, when I was diagnosed my surgeon said I was inoperable because I also had two infected lymph nodes. The treatment did stop those and there has been no activity in them.

All other scans are clear - no mets anywhere, just advanced local recurrent lung cancer, the same damn tumor in the same damn place. I just got results from a small pleural effusion biopsy yesterday - it was clear too - no cancer cells.

So, 14 months after diagnosis I am basically back at square one (tumor was about the same size then and did shrink some during treatment) but my onc told me it is growing rapidly and my surgeon says it is blocking my right airway (as if I didn't know that). As if I didn't know in December the treatment failed. It's my body!

So, way back when my surgeon told me my cancer was inoperable due to the two infected lymph nodes and that my cancer was "bulky". So I got chemo and radiation. Now, he says that although his opinion is still no now, he is sending me to a top thoracic surgeon in Toronto for a second opinion on whether to remove my whole right lung (pneumonectomy). That appointment is June 29.

I think it is highly unlikely that the new surgeon will agree to remove my lung, as my thoracic surgeon is highly regarded. Maybe one percent chance. My guess. This is Canada's system and I can't afford to go to the US so have to accept whatever decision is made by the Toronto surgeon.

So, I saw my onc yesterday and he said there is now no chance of a cure for me as the first line of chemo failed. He suggested Taxotere every three weeks until it fails, then Tarceva until it fails, and then a new numbered pill until it fails.

I also asked him about the Lucanix vaccine trial (Toronto is one of the locations it's taking place at) and he was not impressed with it, and felt his suggested treatment plan was better for me.) But I wonder.

It was a short conversation as the chemo won't start until after my meeting with the surgeon on June 29 on the off chance he will remove the right lung. (My decision to wait. I mean, I've been waiting seemingly forever, what's a few more weeks?)

In the meantime I have a lot to think about and decide.

So, anyone out there been on Taxotere? What's it like? (I did read about it on the chemo care website and other places, but would like to hear from people here.)

And, since everyone seems so gloomy about me, is it worth it to try it? I mean letting nature take its course. Life is good now. I sure know it won't be forever, but not accepting treatment is something I am going to think about. Probably will go with treatment. But I have a lot of thoughts running through my head now, you know?

I guess I am just venting and am in a rare bad mood. Sorry this is so long. Thanks for listening!

Kelly

By BetsyT
Posted June 12, 2009 at 11:20 am
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This sucks. Our DX are V. similar. Before you get too crazy w/ all the info they are throwing at you,... See the surgeon. Sometimes they will operate against "the odds"-They did for me & that was almost 3 yrs. ago. And you may only have to loose a lobe.
Good Luck, Betsy

By caden
Posted June 12, 2009 at 12:17 pm
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I agree, see the surgeon then go forward from there. I've never been on Taxotere--I'm sure someone on thise site can help you with your questions. Sending you best wishes~
Cathy

By SuzzieQ
Posted June 12, 2009 at 12:43 pm
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Kelly

I am sorry this is happening. Go see the surgeon.... BEG if you have to! I am in BC and I well know the Canadian health system.... sometimes it really sucks. If I had left everything in the hands of my family doc I would still be waiting for a biospy instead I have had my surgery and completed chemo. Push for what you want girl and fight, fight, fight.

I know you have a lot going through your head right now.... my thoughts and prayers are with you.

Blessings
Sue

By lucy56
Posted June 12, 2009 at 7:38 pm
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Hi Kelly I,m for Canada ( near Hamilton) my dx same as yours, 3a tumor,nodes same spot, I know what you mean obout the wait time for scans and treatment,when I did get in to see the doc I was told NO SURGERY chemo,radiation is the standard treatment across the board in Canada for my dx. Oh and my cancer would come back. No cure. But my new doc told me IF my cancer came back they had a lot of other treatments we could try, plus I did go to a support group and some people there with same dx as us had surgery done in Toronto. So please let this all sink in and the shock wear off and then fight for what you want, There is a reporter by the name of Don Peat who wrote (headline) CANCER CARE BY POSTAL CODE for the Toronto Sun paper on Feb 13 /08 it was about people moving to BC because of the cancer drugs and treatment covered there and not in ON I do,nt know if you could find this story now , it sure was a shock to me when I read it. This year I was so pleased to read that our government was going to cover the cost of Avestin (sorry about the spelling ) Then I read in the paper that people had to stop useing it ( drugs are working ) Our government will pay for only 16 treatments then if you want to use more pay for it yourself ,there were two people in the story , they had to stop treatment just did not have the money, most people do,nt. well now some MPs are looking in to it , in the mean time the people this drug was helping go with out. This is just me but I think if you work up in the hill (OUR GOVERNMENT ) YOUR HEALTH CARE PLAN was the same as everyones in our country thing sure would change for the better............... Lucy

By Marylou1
Posted June 12, 2009 at 8:57 pm
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Hi Kelly:
I had Taxotere but in conjunction with Carboplatinum. I had 4 rounds of it to shrink a tumor before surgery. It did shrink it, and I did have surgery, but later my cancer did show up in a few small spots.

That is when I was put on Tarceva, and I have been on it for about 17 months now.

In the very beginning, my surgeon told me up front that if he found more cancer in the right lung he would have to take it all. He didn't have to, and I am doing OK with Tarceva. It does have some side effects but can be managed.

I am with everyone else, please see the surgeon first and then go from there.
Good Luck and God Bless,
Marylou

By MarionW
Posted June 12, 2009 at 11:38 pm
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Well, this is just the pits. I would be ranting and raving and screaming at this point!

That said, lots of us have survived the loss of a complete lung and done very well. I am not sure how well the surgery would go if you've been subjected to chemo and radiation.

You do need to get the anger and disappontment out of your system and then try to clear your head and hear what they have to say. You are definitely not going anywhere soon. Way too much energy and desire to stay on with us.

Please keep us posted.

By Bertha23
Posted June 13, 2009 at 8:45 am
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Hi everybody!

Thank you all so much for your advice and prayers! I really was in a bad mood yesterday, eh? Well, it's a new, gorgeous morning and I'm back to my old self, thankfully!

So, yes, I definitely will see the surgeon on June 29 and please pray for me that he accepts me as a patient and agrees to surgery. I know it's a tough surgery, but other than my tumor I am in good health, and have no other health problems.

And, I have been fighting constantly since diagnosis and have had a cancer team since last summer but it has been a constant, uphill battle with lung cancer. I think if you break a leg or need an appendix or gallbladder removed, or have heart problems the health system is fine. Or breast cancer. I really think they're just waiting for lung cancer patients to die here. Too expensive to treat. I think there is a great possibility that if I lived in the US it would have been removed last summer. Who knows, though. You have to work with what you were given, anyway, so no point playing the "what if" or guessing games.

Thanks once again, and I'll be sure to let you all know what happens when I see the surgeon on June 29.

Now, I hope you all have a great day! Me? I've decided to have a gin and tonic with a slice of lemon under the stars tonight! So, have to go buy some gin. Haven't had one of those in about 15 years. Little pleasures!

Kelly

By sharpie
Posted June 13, 2009 at 10:30 pm
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Hi Kelly,

As Auntie used to sah "It's the shits!" Sorry to hear what you're dealing with. You sound amazing and strong, anger can let us feel our strength. I met with several docs who didn't seem to care one wit about ME but I finally found one who would operate and did, thankfully. The gin and tonic sounds great. I gave up alcohol among many other pleasures upon dx in March '09. Sometimes we have to give ourselves what we feel like. Hang in there and hopefully the surgeon and you will "click" on the 29th. In the mean time (interesting phrase "mean time" which is what fighting cancer is!) in my prayers I will surround you in a pink blanket of peace and tranquility and health.
Rose

By robjo122
Posted June 14, 2009 at 7:26 pm
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Hi Kelly, I have the same type lc you do. stage 3b. I just went for 2nd opinion, because they saw 2 nodules in my rt. lung in Jan. after 1st treatment of chemo & radiation. 2nd treatment was chemo which I feel I wasted my time with. Pet & cat scan showed nodules grew after all this chemo. I went to Sloan Kettering in NY. They are redoing all tests. As for the Tarceva-my cousin was on it for 2yrs. She has stage IV in-operable. Tumors stayed the same after 2 yrs. on it. There is also a test they should give you to see if it will work with your type cancer. I can't remember the name of it, it starts with an E. I'm sure someone here know what it is. I asked Sloan about the Lucanix vaccine study. They don't have it for their trial studies & will not get it as yet. Dr. felt it wasn't showing what they felt was needed. Good luck & think positive.

By robjo122
Posted June 14, 2009 at 7:33 pm
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Sorry Kelly forgot to tell you my tumor attached itself to 3 vertebrae, so it is still there also. Did shrink some after radiation & chemo treatment. It is in-operable. 2nd treatment did nothing. I've been thinking a lot lately about this & maybe my system got an immunity to the chemo they were using. They used same type chemo both times.

By Bertha23
Posted June 14, 2009 at 8:01 pm
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Hey Rose! My Mom always called me Rose, it was her nickname for me. And, never did get around to buying some gin but had a homemade cinnamon bun with white icing and hot cup of tea instead! Every once in awhile I have what I call "little pleasures" - they do wonders for my spirit!

And Robjo, I didn't have time to ask if they have done the test to see if I have the genetic mutation for Tarceva - I imagine they have, but will make sure before taking it. Also, hope Sloan Kettering works out for you. By all accounts from messages on this site, they know what they're doing, so you're in good hands. Let us know what they suggest as a next step. There don't seem to be many of them with Squamous.

Kelly

By mrwinget
Posted June 14, 2009 at 8:29 pm
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My nick name is Rosie! I too like to have my little pleasures, russian tea biscuits from a quaint little store close by!
I'll be thinking of you on the 29th. I know you are in good hands though so everything will be okay. Everyone has such good advice on this site, its like a little medical community!
marnie

By Bertha23
Posted June 14, 2009 at 9:16 pm
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Marnie, the Russian tea biscuits sound delicious - I really do enjoy a nice hot cup of tea with something from the bakery - must be the Irish and Scots in me!

Kelly

By robjo122
Posted June 14, 2009 at 9:55 pm
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Kelly, I will def. let you know. I don't see the dr. until the 15th of July. Have to have all tests done again. Does the squamous have to do with smoking? When they did the biopsy they didn't have enough tissue to tell which one it was, so they assumed it was squamous. Oh well, I have been really depressed over this changing drs. etc. I am going to indulge myself in a glass of wine.

By candigrl63
Posted June 16, 2009 at 1:41 am
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hello. since you live in canada have you heard of dca? it is a very promising treatment for lung cancer. they are doing clinical trials right now at the alberta university. here is the email to the person regarding the clinical trial. she is very caring. Diane Arndt (dianearn@cancerboard.ab.ca) . also there is a cancer treatment center in toronto here is their email address Medicor Cancer Centres (info@medicorcancer.com) they specialize in the treatment of cancer with the dca protocol. google dca cancer and read about it.. also on youtube there is a news report on it. there are no clinical trials in the u.s. yet but i hear they are going to be soon.
maryann

By Bertha23
Posted June 16, 2009 at 6:53 am
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Thanks much for the info maryann! And, nope, hadn't heard of it! Sounds promising! I'll talk to my onc about it the next time I meet him. We haven't discussed clinical trials yet. Also, I've read your thread and wish you the best!

Kelly

By mickyinko
Posted July 1, 2009 at 8:41 pm
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Am having Taxotere, as 4th line chemo (single agent).
It does seem to be doing it's job (according to last x-ray) but won't really know 100% until after the C.T. scan on the 17th. As far as the side effects go it is really tiring, I could sleep 15 hours a day but when you are working 12 hours a day it is impossible so just have to put up with it. I did also have a dizzy spell last night where I think I passed out, not quite sure as it was over so quick. Have just finished 2nd round(4th LIne) so as you can imagine I am expecting miracles here.
Take care and lots of love Micky and Yun Hee

By Bertha23
Posted July 1, 2009 at 9:56 pm
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Hi Micky,

I've been reading your posts since I joined and you are truly an inspiration! I don't see how you do it all, you're amazing! Thanks for sharing about taxotere. I just started a new thread a few days ago called Update: no surgery, because it looks like I'll be getting brachytherapy (also known as internal radiation therapy) now, and I don't know much of anything yet, especially if I'll still be getting chemo at the same time. I meet with the onc on July 9 so hopefully learn more then about what my docs plan as treatment for me now. As ever, my case seems to be screwed up! I've heard taxotere is tough, basically 10 days feeling rotten, 10 good days, and then start all over again. I really pray it works for you Micky! You're one brave man with all you've been through. Thanks again for responding!

Kelly

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