NSLC follow up: ca-125 up to 111.6 - 1266060

terry65
Posts:10

Dear Doctors and dear members,

I'm back with no good news about my dad (he'll be 79 in Dec., never smoked, zero symptoms, diagnosed with stage IV NSLC in 2013, at first misdiagnosed -oct. 2010).

If you want, please read his story here:
http://cancergrace.org/topic/liver-ttf1-positive-lung-cancer

He had 5 rounds of carbo + alimta (the 1st on Aug.28, the 5th on Dec. 30, 2013)., rather well tolerated. Everything has always been OK with follow up (TC scans, CEA, Ca125-). Unfortunately a few days ago he checked his markers and Ca-125 jumped up to 111,6.

He'll have a TC scan (abdomen and chest, no brain) in a few days (sept. 24).

The fact that my dad had a high marker (ca-125? The oncologist didn't tell us) before starting carbo+ alimta, is a sign he has a recurrence or new or bigger mets this time too?
What to expect now?
Carbo+alimta again, other drugs or what? We don't know the biological kind if his cancer.

Thank you for your attention and for this wonderful website. Best regards.

Forums

catdander
Posts:

Hi Terry,

It's a good sign that your dad has done so well for so long. Another good sign is that the CT scan isn't showing any progression. The ca values can't be trusted to say that the cancer is progressing though it may signal that you want to keep a close eye on it perhaps with a CT scan within 6 weeks instead of 3 months.

We have several blog posts about what options are available for 2nd line treatment. One point that is very important is to think of treatment as something to use only when needed especially if the cancer is indolent like you dad's has been. Following are links that can get you started thinking about what's next.

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o… and don't miss the several links at the end of Dr. West's discussion.

http://cancergrace.org/lung/2013/09/01/can-lung-cancer-be-over-treated-…
http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/ note that this algorithm goes for indolent lung cancer that isn't BAC

I hope this is a long journey filled with good living,
Janine

Dr West
Posts: 4735

I think the major take home message I'd want you and other readers to appreciate is that a rising tumor marker isn't definitive evidence of progression and is something that most lung cancer experts really don't put a lot of stock in. While it's reasonable to use a rising serum tumor marker (such as CA-125, CEA, etc.) as a signal to do imaging sooner rather than later, lung cancer experts try to caution people that if a scan looks stable, a rising serum tumor marker shouldn't lead to a change in management. If you can't see a clear worsening of disease on scans or in terms of a patient's clinical deterioration, it isn't clinically significant. We hate to toss effective therapies too early, so we really want to continue many of our treatments until either significant disease progression or prohibitive side effects.

Good luck.

-Dr. West

Dr West
Posts: 4735

I'll also add that in ovarian cancer, where CA-125 levels are very commonly checked, they've done a big study that shows that using rising CA-125 levels to make treatment decisions leads to no improvement in patient outcomes at all compared with using imaging and symptoms.

-Dr. West

terry65
Posts: 10

Dear Janine and dear Dr. West,

I'm glad to read you again! Thanks for your replies.

Let's wait for the results of TC scan of next week.

For now, I just can confirm that my dad is in very good shape (no symptoms at all) and he leads a normal life. Many thanks and best greetings and wishes from him too.

Terry

JimC
Posts: 2753

Hi Terry,

No symptoms is always great news, and a good indication of how a patient is doing. Best of luck on the scan results.

JimC
Forum moderator

terry65
Posts: 10

Many thanks for your reply to you, dear Jim!

I'll keep you all informed...

Bye bye from Italy -- Terry & dad

terry65
Posts: 10

Dear staff and members,

I've been away for a long time but now I'm here again with bad news about my dad.

On Jan. 8 he had blood test and Ca-125 rised to 140 (the other markers are OK); on Jan. 15 his total body TC scan showed an enlarged iliac lymph node (it growed 1 mm bigger in 4 months).
No other bad findings in the TC scan results.

The oncologist will see the radiology and the oncology staff to decide whether to perform a biopsy of the iliac lymph node or not.

I'm really worried my dad has a recurrence in that lymph node. In that case, will it treatable?
My dad is still healthy and active.

Thank you for your attention and your precious work. Many wishes and greetings to all.

terry65
Posts: 10

Dear doctors, staff and members,

I am here again because I am so worried about my dad. He started losing appetite and (much) weight in June, so the oncologist, after a CT scan with no new findings, decided to stop his chemo for 3 months.

Now he's having difficulties in walking (I mean, he walks slowly, prefers not to make any effort, but he doesn't need a walker) and, since past Friday, swollen and red feet (especially the right one). Today, for the first time, sweeling has decreased in the morning and returned only after lunch.
He's taking diuretic pills.

Can the swelling (and the loss of weight) be a symptom of a recurrence of one of his two primary cancers, even if the CT scan's results of June 22 showed no progression?
Also the markers were ok.

Thank you very much for your wonderful work here and best regards to all.

JimC
Posts: 2753

Hi terry65,

I'm sorry to hear of your dad's new symptoms. Although both swelling and appetite/weight loss, usually a scan taken at the time the symptoms appear will show any progression that may have occurred. If the diuretics seem to be working for a segment of each day, perhaps his doctor might consider changing the dose and/or frequency of that medication. Another consideration might be adding a medication to try to help stimulate appetite.

I hope you can find some answers to help him.

JimC
Forum moderator

terry65
Posts: 10

Dear Jim, thank you so much for your reply!

I forgot to write that the oncologist has also prescribed (past June) curcuma and that now my dad has stopped losing weight and he started eating more.

Talking of everyday's life, he still drives his car and was able to do the shopping, walking inside the supermarket near his home just before the swelling of his feet.

Now, as I said, he prefers to stay indoor, also because we are having a very hot and humid summer here. I guess this doesn't help.

I need a little hope...