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Well OK, I guess I could use a little mojo now ...

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

This was kind of inevitable, and clouds have been looming on the horizon since my previous two scans. When the doc says, "Your scan looks okaaaaaaaaaaaaaaaayyyyyyyy ...," and manages to cram about 4 syllables into the final "...ay," you know all is not ideal:

My latest scan showed that two tiny spots in my lower left lobe that couldn't be treated by anything other than chemo before because of location and size, have grown. They're still relatively small according to the doc (7 and 11 mm, which sounds huge to me), but it's gone beyond the point of watchful waiting.

The silver lining in the cloud is that if the main area treated before looks under PET like it's still killed, surgery is now adjudged to be an option. The doc says, "We'll just kinda look at it like we're starting over." All right; I can buy that. Not sure what kind of surgery yet, but I'm pretty sure I'll have a longer recovery than I had from the chemo and rads.

The other option is stereotactic radiation, and I guess I'm interested in hearing from anybody who's had that. It still seems like it would be pretty tough to hit spots the size of the small one on a moving surface, but if they say it's doable, I'm in.

I'm also having a pulmo function test for the first time next Monday, I assume to judge fitness for losing a hunk of lung. Not really worried about that, as I haven't noticed any real impairment since treatment, and in fact have been racking up between 100 and 150 bike miles a week over most of the summer. I expect to put up the numbers of a fully-abled 35 year old. Yeah, right! ;-)

At this point I can't wrap my mind around the idea of maintenance chemo, so I hope these other options stay open.

As always, any words of wisdom appreciated!

gtp1164
Posts: 10
Joined: Sep 2012

what kind of lung cancer do you have and what stage?

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

Diagnosed 3B NSCLC adenocarcinoma with mets to lymph nodes (all within chest) April 2010. End of treatment mid-July 2010. Pretty much an undiluted success story from then until most recent scan.

Hopefully that can continue.

z's picture
z
Posts: 1261
Joined: May 2009

I had vats for the lower right lobe, I was in hospital for 3 days and returned to work after 1 month, that was 9-23-10, and I feel very well. I know the lower left lobe is very small, so if they remove it, according to my oncologist, your lung will inflate up to 30% more to compensate. I breath better now than before as I was a 35 year smoker until 5-4-09, where I had quit before undergoing tx for anal cancer, in which I completed tx 6-30-09. So far so good for both I have ned. I visit the colon cancer board, and there are stage IV survivors who have had wedge resections and gamma for lung mets, and have been treating the lung mets as a chronic illness, about once a year a nodule will pop up, and in one way or another they well get rid of it. I wish you well. Lori

sleepless in jersey
Posts: 185
Joined: Feb 2011

As you can see by Mom's history she has had WBR, and Gamma knife. She originally had brain surgery, the tumor was very large, after surgery was WBR to treat the multiple tumors, than 14 mos. later we were told 4 popped up so we need to do g.knife. before they get to big that it's no longer an option for g.knife and than it's surgery if you wait.
The g.knife is just a couple of hours and that's it not painful at all, however Mom had some anxiety prior and morning of for a lack of better wording " the apperatice" that has to be placed is uncomfortable while being placed other than that it wasn't bad. (I was with Mom for the whole thing).

Her Doc's made a point do it now before it's to late (I believe her's were around 4mm, don't remember what the size is that you no longer are an option).

Hopefully I answered what you were looking for? If you need more info I would be happy to share with you.
Good luck to you
Sleepless

My Mom who’s 62 now. Has been DX 1/3/11 NSCLC (Adeno) Triple mutation neg. 10 days of WBR and brain surgery 1/11, started Carboplatin/Alimta/Zameta and B12, showed 1 tumor growing switched TX to Taxotere/Zameta 5/11 too many side effects, tumors have grown, port put in 8/11, thoracenteses x2 neg.- CA, pleurodesis on both lungs 8/11 & 10/11. Gemzar 8/11 growth and too many side effects.11/16/11 started Navelbine. 5//12 scans showed some growth to chest wall, switch to Topotecan. 7/12 progression with several brain mets, poss lepto. Tarceva 7/12

granny maggie
Posts: 15
Joined: Jul 2011

Hi Ex Rocker, I been going through alot with my lung cancer. I have squamous cell but I had Cyberknife which I believe is the same thing twice, the first time the tumor was in the airway so they used that which is a robot that is programmed to hit the mark and the whole process was 5 days 2 hours everyday. You lay on a table and cannot move or fall asleep as it is programmed to you breathing. We have the Cyberknife in Elmhurst, Illinois at Elmhurst Hospital so I don't know if there is anywhere around where you live. I would try it. I get tumors every year so I'm either on chemo or cyber but now I have three so my next Cat Scan will be interesting. My tumors are small also but I have had alot of different things since 2007 including a lobectomy and wedge resection in the left lung and
cyberknife twice and chemo twice in the right lung anyway I can't ride a bike or even dance as I'm on oxygen and I'm 76 and still going HaHa slower than a turtle but I'm going. Anyhow after all that try the stereotactic radiation if it is cyberknife. Look it up on the computer. Good Luck and God Bless.

feistyD's picture
feistyD
Posts: 21
Joined: Nov 2011

Would you consider an immunotherapy clinical trial if you qualify? My oncologist called it my chance for a home run. I am in the Merck anti-PD-1 clinical trial for NSCLC, and I am having an amazing response. A new arm of the trial just opened at several centers across the country:

http://www.clinicaltrials.gov/ct2/show/NCT01295827

I'd be happy to answer any questions you may have about it, or you can contact my clinic.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

... but I fail the following bullet even if this trial looks like a good idea after I see the PET results:

•Active autoimmune disease or a documented history of autoimmune disease, except vitiligo or resolved childhood asthma/atopy.

Psoriatic arthritis since the age of 19.

dennycee
Posts: 673
Joined: Mar 2011

XRR
If the news has to suck at least it doesn't have to suck bad. Those are some small spots and I am glad for you that they are. Your description of the stereotactic radiation sounds so apt but I do understand why you would take that before surgery. If you have to go for surgery ask for the VATS. They can do both a resection or lobectomy (guess you probably know that). I will send positive thoughts your way for the radiation.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

I must have had my bad communications hat on above. If surgery is an option, I'm definitely going with that as choice #1. Monday will tell the tale.

Thanks for the positive thoughts!

dennycee
Posts: 673
Joined: Mar 2011

Surgery can be done VATS either one. I'm not reading with my comprehension glasses on.

don09's picture
don09
Posts: 61
Joined: Dec 2009

Go with the VATS, Lori is right, it is less invasive. I had the same situation as you in April 2010, I was out of the hospital 2 days after the procedure. Not something were thrilled to hear, but am sure you will breeze through it, keep us posted on what route your going to take, you do have many options. All my best to you.

sleepless in jersey
Posts: 185
Joined: Feb 2011

Where was my head when I wrote in I apologize, for whatever reason I had brain tumors on the brain...I just have sooo much on my plate right now, my husband just got out of the hospital yest with a knee replacement, daughter had major knee surgery in July and ummm Mom...I think I will leave posting alone for awhile and do some reading and prayers for all!

Good luck to you
Sleepless

denistd's picture
denistd
Posts: 508
Joined: Apr 2009

Not able to chime in on any of this, I have a nodule in my lung that I am awaiting biopsy results on. But wanted to know how you become an "Ex Rock & Roller" I am 69 and apart from my family rock and roll is still the big thing, don't play anymore, arthritis in both hands but keep up with all my old mates. I am from England originally and now live in Pa. Have been a bass and guitar player all my life. Played in bands both in the UK and here, played with some of the great guys, Steve Marriott being the best, have shared stages with the Stones, Clapton etc. All the best to you man, we both need to keep up the fight. Denis

kado4
Posts: 80
Joined: Jul 2011

Haven't been on in a while...just read your post.Sorry to hear about the spots on the left lower lobe.By this point you have had your pulmonary function test, which I am sure you did well in..im sure surgery, if thats what you decide on will go well.I wonder if you could have radiation to shrink the size of the tumors and then later have a vats procedure to remove the affected lobe.Im not sure on that one....Keep us posted. You've had such a postive attitude since I got on here for my dad,that I really tried to follow that in my life and for my dads life...you really helped me alot....Please keep positive during all of this testing, etc...Will say prayers for you.

Take Care,Kado.

AlanRinHBG
Posts: 120
Joined: May 2011

Hi Steve, been a while. I can relate to every bit of this. I've had 3 PFTs over my 3 year tme since dx. I'm sure you aced that with your fitness plan. I've had stereotactic rads too . I finished off with Cyberknife which I swear is the ultimate device. It can reach little tumors with accuracy to within 1/2 mm.(awesome). I did all my treatment with no surgery and Cyberknife was touted as surgery without the surgery. I've been NED since Jan., 2001. There is also Proton Therapy which I'm sure you are aware.

That brings us to NOW. 2 weeks ago today, my left lung completely collapsed due to a hole blown out out of it like a flat tire. Went to th ER. I had to have a chest tube PUNCHED in and I do mean punched. It felt like a gunshot. Anybody ever need one, ask for anastesia, I'm serious.I had surface novacaine and morphine through iv. not much help. Then I laid in the hospital for a week waiting for the hole to heal on it's own. I was told that 80 to 90% do just heal. Mine was obviously too big and required a thorocotomy and wedge resections to fix. The exact surgery I was so happy to avoid 3 years ago. So, here I sit recovering nicely and doing great. It is a heavy duty surgery, but it turned out to be the only thing to do. It wasn't cancer related at all. The holes were called "blebs". You can google that if you want but they are common and seldom cause any issues. Soooooo, surgery may not be something you want to dive into before you check out some of the new finely targeted radiation methods. Hope it helps. The surgery was tough but doable and could be a final once and done thing in your case. Keep pluggin, you'll be OK,,, Alan

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

... it does not look like I'm going to be OK.

The PET results show that the small LL stuff could be dealt with, but unfortunately, they also show that the original mass in the windpipe area is growing. Since this has already been irradiated to the max, the only options left would be chemo, which is a pretty iffy thing regarding NSCLC. They didn't tell me my PFT results since they're quite irrelevant at the moment, but on the bright side, I think I did see some 100%s on the graphs!

So out of first-line treatment, I got two great years with basically no limitations on my lifestyle whatsoever, but am now driving straight into a brick wall, with the only unknown variable being speed of approach.

I'm very positive about being able to get through almost anything when there are options, but when all the good ones are foreclosed, I'm not so sure.

Only remaining activity that I know of is I have to go in for a bronchoscopy and biopsy to see if the nasty bit might be susceptible to Tarceva, which is pretty much a more tolerable bad option compared to the other bad options.

So other than that, how'd you like the play, Mrs. Lincoln?

Spent the weekend on a road trip to have a jam session with another bunch of geezers, and am just looking to get back out on the road for some more camping if at all possible.

As Jimi Hendrix would say, "Shucks."

Dan620
Posts: 214
Joined: Dec 2009

Just want you to know thinking of you and adding prayers that you will do well. Your battle with NSCL 3B is so simpliar to what i have gone thru with chemo, rads and the burnt esophagus. ... Dan (I wish i could put into words my feelings)

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I'm a refugee from H&N. Actually, still holding out a small hope that I don't belong in this group, although I'm sure you play better than I. S H U C K S. Rick.

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Hey Rocker, do not give up please, you are the jimmy Hedrix of this group.
God always is with you.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

Maybe in the sense that I should set my guitar on fire, but I don't know if I'd go much beyond that! :-)

Thanks!

lekkerone
Posts: 199
Joined: Jan 2011

I have not been here for awhile and was shocked to see your post. However, I believe if anyone can get through this it is you. I wish you everything good and hope they can find a treatment that is going to do the trick.
Just keep plucking that guitar and (easier said than done) please stay strong. All my best wishes, Diane

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

... for the well-wishes.

I just took Xalkori pill #1, so we'll see how that goes. I have to say it's a different state of mind jumping into a new treatment when you feel great, which I do. It was a little easier to wrap my mind around doing anything and everything back when I was diagnosed, because I had nasty symptoms and could perceive real problems.

Now I'm trying to push the brick wall back even though I can't quite see it. Different kettle of fish.

In any case, I'm pretty positive about this. As long as it doesn't take me off the road!

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