Lung Problems on Kadcyla?

[Mtngrl]

My latest PET showed "mixed" results, with reduction in uptake most places, but increased uptake in my lower left lung. My oncologist had a lung specialist look at the scan, and he/she said the area in question didn't look like cancer.

I had a lung biopsy on April 2 that was positive for breast cancer, but the report also said there were very few cancer cells.

I'm scheduled to see a pulmonary specialist this coming Thursday. In the meantime I got on the Kadcyla website and started reading the fine print. Guess what? In the trials, some people developed interstitial lung disease and/or pneumonitis, with some acute respiratory disease and even death. I have had a little tiny bit of shortness of breath (which comes and goes), and a few mild, short term spells of dry cough, but I simply do not appear to have any lung disease.

I'll let you know--but it looks like I might be on to the next treatment pretty soon. I don't want to be one of those "the treatment was a success but the patient died" stories.

[Jackie07]

O Mountain girl, you sharp cookie. You are not going to let that happen! Glad you figured it out and pursued the solution. Hope everything goes 'smoothly' from now on.

[KDR]

Amy,
There is a trial combo, temsirolimus and neratinib that looks promising. Someone with advanced disease I know personally is on it and doing extremely well; it also appears that other patients in my clinic are benefitting greatly from it. The main side effect is diarrhea, for which one would be medicated for, and that side effect minimizes and disappears within a few months, as the body adjusts.
Wondering if it is available in your area, just to check into.
Karen

[michka]

Hi Amy.
a very little number of women did report a sort of lung inflammation with TDM1 (Kadcyla) and some had to stop. At my 5th or 6th round my scan showed a small zone like depolished glass on the top of both lungs. I had breathing problems. the doctors said it was not cancer and that they did not know what it was from. They also said that the incriminated zones were too small to explain my breathing problems. I continued the treatment and it did not worsen. Because of the breathing problem and the extreme fatigue, the dose was lowered after 10 rounds and the traces in the lungs went away and this before my dosage was lowered a second time after 18 rounds. I am happy the doctors did not stop me because TDM1 wiped out my numerous tumors.
Amy, I hope what the doctors see on the scans will stay small or go away also. It should be watched of course because some girls really had to stop.
I think you are right to try to continue since the results are encouraging.
I hope others will share their experience because we react all so differently.
Hugs, Michka

[NEDenise]

Amy,
Thinking of you and praying for exclusively promising, happy, and inspiring news for you in the days and weeks ahead.
You, my friend, are due for a period of easy (or NO) treatment!
With love,
Denise

[sarah]

Hello,
I have fibrosis in my lung due to the radiation. I was told it couldn't spread to the other lung, hope they're right about that. I was given a spiriva inhaler to help with breathing problems- not sure of the side effects or interactions with other things.
There are physical therapy exercises you can do to improve breathing - my husband has Ankylosing Spondilitis and had extreme breathing problems until he wasw given several exercises to do to strengthen his lung capacity.
It is frightening when you feel breathless when you have been used to doing a lot.
take care
hugs
sarah

[Mtngrl]

Thanks, everybody. I hadn't thought of lowering the dose, but that might be worth a try.

It is interesting that the increased FDG uptake is only in one area of one lung, and is in a slow-growing, odd-looking area that was not obviously cancer. When I had it biopsied I fully expected the results to come back negative. I thought we were going to get to the bottom of the "thing," whatever it was, and figure out how to deal with it (or decide to quit worrying about it). I was shocked when they found breast cancer cells there.

I don't really have any breathing problems. That's what's odd about this. The only "symptom" is the scan result.

Of course this is my own assessment of the situation. The lung specialist might see it differently. I just always try to figure things out for myself.

My appointment is Thursday, and I have lots to do between now and then, so the time will go quickly.

[phil]

i agree w/ michka, to try to continue. barbara h. on this site was one of the first to get t dm-1. she developed lung inflammation , had to stop , ( 2009 ? ) but last i heard is still ned . maybe she got enough ? she now takes herc/ tyk as safety net. i had heard of lung inflammation , but no deaths from it. the trial literature has to mention any possible s/e, incl. possible death, and also documented deaths as well. the trial write ups we have read say 2 deaths early on from liver failure, but both had pre-existing , non- cancer liver disease . i have heard of no other deaths.
We are still learning about this unique drug - how many doses ? at what strength ? maybe Lorraine has got more than enough ? like michka, we too are very gald that our docs advocated for us w. gen. to let L. stick w/ it even as plats dropped . we focused on response first , then how bad were s/e's .
it still seems to be the most promising new tx for metastatic her 2 right now. to me especially for newly dx stage iv. hope it gets replaced w/ better tx's soon.

[Mtngrl]

Phil--Thank you so much. That's a great way to look at it.

I am very happy to be a part of this community and the beneficiary of so much collective experience and wisdom.

[LISA D]

I just set up my name as a user on this site, but I have been following the site for the last ten years. I was initially diagnosed in 1991 with recurrences in 2001 and 2005. I have been NED for 8 years taking Herceptin every week. NED ended on September 13th when CT showed a tumor in the mesentery near my small intestine. I am scheduled for surgery on September 27th and then to begin Kadcyla two weeks later. I was wondering what side effects you have experienced from Kadcyla. I have had the top lobe of my left lung surgically removed and I am concerned about the effect of this new drug on my lung.
What other side effects have you had?

[Mtngrl]

Lisa D--

Sorry your long dance with NED has come to an end, but welcome to our little family. Here's hoping the local treatment plus Kadcyla bring NED back lickety-split.

There's a separate thread on this site for Kadcyla side effects. That might be helpful to you. Also the Genentech website has useful information.

I don't know how common lung inflammation is on Kadcyla. It's also not confirmed (yet) that it is a side effect in my case. I'm going to have a procedure to collect more tissue samples from my lung so we can figure out more about what's going on.

I have other, acknowledged side effects. Kadcyla is targeted, but it's also chemo. I have neuropathy. My liver enzymes are elevated (though not dangerously so at this time). I get headaches, and I have "spells" of hot flashes and dizziness.

Kadcyla is a really good drug, very effective against HER-2 positive cancer and well-tolerated by most people. You'll probably do fine.

[Mtngrl]

I met with the pulmonologist. I had expected it to be a consultation; that we would discuss possible causes for the inflammation and a range of options for what to do. He seemed to think he was just going to do a bronchoscopy at my oncologist's request. I saw my oncologist shortly thereafter, and she was also surprised I didn't get more insight into possible causes.

I asked my oncologist about lowering my dose, and we did that, on September 30. The next day the pulmonologist's office called to schedule the bronchoscopy, but without also scheduling the high-resolution CT scan he had told me would be needed in order to get down into my lower left lobe. He had also shown me some lymph nodes higher up that he could sample without the CT. I said no, not until I understood why we'd be doing this procedure and what we expected to accomplish.

My next PET scan is scheduled for Nov. 4. I'll have had another (lower) dose of Kadcyla by then. I'm going to wait and see what the scan shows.