Next steps in this journey

[Kelly]

Hi everybody!

It's been a long time since I wrote here about me but have been lurking and reading and sometimes popping in! Thank you to all the people who took time to tell their stories and to all the people who regularly reply. You give us all hope, lurkers like me, too!

I finally feel like I have news where I need advice.

To recap, I am a female and was diagnosed with NSCLC Stage IIIA Squamous at age 51 (am now 52) and began treatment with Cisplatin and Vinorelbine (four rounds) concurrent with 33 sessions of radiation. My LC tumor was 10 cm by the time treatment started (I live in Ontario, Canada, near Toronto, and the health system is slow moving here) and is in the right lung, high up, and I also had two lymph nodes infected that were described as "bulky" by the surgeon who did the Mediastinoscopy and Bronchoscopy and were wrapped around the lower main windpipe.

Since the cancer had broken out of the lungs, the surgeon said I was ineligible for surgery. All other tests were clear: brain scan, bone scan.

So I started treatment the last week of July 2008 and it ended in mid-October 2008.

My one huge regret is that, at the end of the treatment my red blood cells were so low I could barely move yet didn't get a blood transfusion. (Long story.) That meant that it wasn't until mid-December that I was starting to feel better as it takes that long for your bone marrow to reproduce red blood cells.

At the same time, mid-December, I had a followup CT scan and all they told me was that the tumor was smaller (5 cm) and they weren't sure whether it was a empty sack of scar tissue or if there was still some cancer there. I would have to wait a for a few months for another CT scan to see what was going on. A CT scan was scheduled for March 16, 2009, yesterday.

Prior to that, I went to see the radiology oncologist on Feb.23 because I was having pain in my right ribs. He ordered a chest x-ray and a bone scan. He had the results the next day and told me that the bone scan was good, but that the chest x-ray showed a small lung collapse in the middle of the right lung. He said it was small, so they wouldn't treat it and it should heal by itself.

Also, around that time I was having headaches everyday, for five to 10 minutes a day, about three or four times a day, so he ordered a brain scan. It came back good or clear on March 10, 2009. (What is the right terminology to describe a good or clear scan?)

Then I had my CT scan to the chest and abdomen done yesterday. I was able to get a copy of the written report from my family doctor's nurse. (Both my radiology oncologist and medical oncologist (chemo doc) are on holidays and my next appointment (to see the radiology oncologist) is Tuesday, April 7.

So, according to the written report things aren't so great. I'm just going to type it out here.

"CT chest and upper abdomen with Iv contrast.

Comparison is made with the previous examinations, including the most recent study dated 12/11/2008.

There was a problem with the contrast injection and suboptimal contrast-enhanced images have been obtained.

No abnormality is seen in the left lung. On the right side the mass has increased in size and now measures 5 cm x 6.7 cm compared to about 4.3 x4.7 cm at its broadest dimensions on the previous examination. Cavitation was present within the mass on the previous examination and this is no longer evident. There is a new small right pleural effusion. There is no evidence of pericardial effusion or left pleural effusion. Lymphadenopathy in the mediastinum is unchanged compared to 12/11/2008/

No abnormality is seen in the liver or adrenal glands. The spleen, pancreas and kidneys are unremarkable. The abdominal aorta is not aneurysmal. There is no ascites or evidence of mass or lymph node enlargement in the upper abdomen.

Conclusion: Interval enlargement of right lung mass with development of right pleural effusion. No other change since 12/11/08."

The end of the report.

So, I suppose at my next appointment on April 7 they'll tell me I need to get back on chemo? And what about that small pleural effusion? (And remember the chest x-ray on February 23 showed a small area of collapsed lung?)

Personally, I feel fine. SOB going up stairs is my mainstay symptom and I have been taking Hycodan syrup for cough.

Any insights or advice for when I meet with the doctor on April 7th would be appreciated.

Sorry this is so long. And, again, thanks to everyone who makes this such a remarkable site! You're all always in my thoughts and prayers.

Kelly

[SandraL]

Hi Kelly. I am sorry to hear of your progression. Yes the doc will probably suggest another type of chemo of which there are several to choose from. Best of luck with your appt and hopefully 2nd line treatment.

Sandra

[recce101]

Hi, Kelly:

Any insights or advice for when I meet with the doctor on April 7th would be appreciated.

One thing I'd be asking, mainly out of curiosity, is how the statement about the "small lung collapse" noted on the February x-ray fits in with the comments about the tumor on the two CT scans (cavitated in December, not cavitated and slightly larger in March). Depending on how clear the X-ray image is, it may or may not be providing useful information about what was happening to the tumor last month, and your oncologist's recommendations for treatment will probably be based on the latest CT scan (some tumor growth and a new small pleural effusion). But apparently the cancer is still confined to your right chest, which is very good news.

The clear brain scan is also very good news. You asked about terminology. When I got my brain MRI some time ago, the written report didn't say "clear" or "good" but rather that my brain was "unremarkable." I happily showed my wife, who said she's known that for years! Best wishes and Aloha,

Ned

I can understand your concern about the

[Patti B]

Hi Kelly-

Sorry to hear that the news was the greatest. I would imagine that your onc will put you back on some sort of chemo which hopefully will kick the cancers butt!!! As far as the small pleural effusion goes, I have had one since my diagnosis 2 1/2 years ago and they tell me its not that big of a thing to worry about. Its never gotten bigger so they don't bother with it. Which is fine by me.

Please let us know what they decide to do. Anything else you need, just ask.

Hugs - Patti B.

[Kelly]

Hi Sandra, Ned, and Patti!

Thanks for replying! I think there was lots of good news in the report, in that I am very happy, of course, that it hasn't spread! Ned, I'll ask about the cavitation, small lung collapse and small pleural effusion. And, Patti, thanks for the reassurance about the small pleural effusion. Hope mine stays like yours!

One more question. I know it is hard to be specific and nobody is a mindreader, but does anybody know which chemos are often used as second-line? I'd like to read up of them before I meet with the doctor.

Again, thanks everybody!

Kelly

[Patti B]

Kelly -

These are the chemos I have been on, in the order I was given them:

Carboplatin/Taxol/Avastin

Avastin alone

Alimta

Tarceva (oral chemo)

Now on Navalbine weekly

Now, I have adenocarcinoma, not squamous cell so I am not sure if that makes a difference or not.

You can go to chemocare.com to look up any of the above chemos.

Keep us posted!!

Hugs - Patti B.

[recce101]

My chemos are the same that Patti listed, except I had Tarceva before Alimta, and I'm just starting Alimta with unknown results so far and haven't had a need to try anything further such as Navalbine. But like Patti, I have adenocarcinoma, not squamous, and it DOES make a difference in at least two cases that I'm aware of. Many (most?) oncologists don't give Avastin to squamous patients because of safety concerns uncovered in clinical trials. And Alimta has recently been found relatively ineffective against squamous cancers.

You can get the best answer by posting your question (with background information) in the forums section of cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here.

Ned

[cat127]

Having squamous cell histology, they would not use Alimta, as recent data shows that its effects are seen in non-squamous cell lung cancer. Avastin is also not used in patients whose histology is predominantly squamous cell. In the US it is specifically labeled for use in non-squamous NSCLC.

My sister has mixed histology, though I'm not sure if the path report ever told us what the predominant histology was.

She had Carbo/Taxol concurrent with radiation

Now she is on Tarceva, which has FDA approval as a second line therapy in NSCLC, regardless of the histology. I would think that is a possibility for a second-line therapy in Canada as well.

AND JINX to Ned, as we posted at the same time.

[SandraL]

Hi Kelly. I have been on alimta, gemzar and tarceva. With varied side effects on each. There are other 2nd line chemos as well.

Sandra

[Muriel]

Mine is squamous cell. I was on carbo and taxol the first time and on cisplatin and Gemzar the second time. This was a while ago, tho: fall 2003 and winter/spring 2005.

Muriel

[Kelly]

Hi folks!

Thanks for all the info! I'll report back once I've seen the doc in April. I might be reading things wrong, but it seems that Squamous doesn't have as many options as other types of LC after the first line. It'll be interesting to see what they propose.

Kelly