What next?
 

My cancer has "woken up" again. We never got it all the way to NED on Herceptin, Perjeta, and Abraxane, but almost. Now the areas in the lower lungs are larger and more active, and some spots that were undetectable before are lighting up again.

My oncologist thinks I should add another chemo. I think that's probably wise, but I dread side effects. I also suspect that whacking my immune system too hard may interfere with my body's ability to control the HER-2. It's a fine line.

There are a number of classes of chemo drugs I haven't tried yet. Crowdsourcing here: do you know of an "easy chemo" that has worked on lung mets? In particular, is there one that doesn't cause hair loss or severe immune suppression?

In a sense this development still meets my personal definition of "stable," because there are no truly new lesions. On the other hand, it does seem to be heading in the wrong direction. On the plus side, I feel fine. If I didn't know better I'd swear I was in perfect health.

Re: What next?
 

Hi Amy,

No advice but just wanted to say I am sorry this is happening to you, it totally sucks.

Hoping someone (a bunch!) will answer asap with some suggestions for you!

Carol Ann

Re: What next?
 

Amy, SO SOO VERY SORRY to hear this.

I too am starting to have problems. A simple lumpectomy with to specks and nothing
in lymph nodes, should have been a slam dunk. Everything ended Jan 2015 to a come
back Aug. of 2015. 6 tiny dots on lungs. Did chemo six rounds cleared everything up.
Stayed on Herceptin, Perjeta. Spoted a tiny lump near collar bone. Was scheduled for
a pet scan in 3 weeks and this hospital has a mobile unit that comes in to that.

I thought due to the rash and hives from Perjeta was causing the problem.
Nope it lit up and under my right arm pit. Will be seeing the Doc. Wed. If I get 5 yrs I will be lucky.

Re: What next?
 

Amy,

Dang, what a bummer! I'm sorry that I can't offer you any advise on what chemo to take for lung mets. Hopefully there will be one that will put you back to stable without all the dreaded side effects. I'm glad to hear that you are feeling well. Cancer is sure strange in that you can feel perfectly fine but have areas light up in PET/CT scans indicating that the cancer is active.

I'll be sending positive healing energy your way Amy. Hang in there!

Take Care,
Brenda

Re: What next?
 

Hi Amy
I'm so sorry to read your update, and sorry I don't have any thoughts on an easier chemo. But dependent on how much is active, have you considered a targeted option, e.g., surgery or SBRT? (If it's both lungs, then probably not surgery - not that I know that for certain!). But they can do more than one tumour at a time with SBRT. I just had one treated at the end of 2015, and seems to have been successful.

Keep in touch with progress. Sending you big hugs.

Marie

Re: What next?
 

No advice, Amy, but sorry to hear your news and will be thinking of you. Sometimes scans seem to bring up stuff that perhaps we wish we didn't know... so hard when you are feeling well.
Best wishes.... Pam

Re: What next?
 

I'm so sorry. Navelbine can work well incombo with herself in and perjeta. No hair loss. I don't know what a whack the wbc take though. If you need a booster have you considered Leukine over Neulasta? Neulasta only boosts the neutrophils but Leukine boosts everything including the dendrites. Dendrites can help with a "self vaccinating" effect.

Re: What next?
 

Amy,
Damn - that is not what anybody wants to hear. I am always keying in on facilities for cancer treatment in case I need them in the future. I read the other day about Dana Farber Cancer Institute and how they are working on many different kinds of cancer treatment using our immune systems. It might be something to think about to consult with them.
You are in my prayers and stay strong.
Pam

Re: What next?
 

Thank you, all.

I have raised the possibility of local treatment, both last Friday and in the past with my previous team, and the response has been lukewarm. I think I'll ask again. Maybe we're saving radiation for "later." I don't know.

I am treated at an NCI cancer center. I asked about targeted therapies/immune therapies in a recent email, and I was invited in to discuss clinical trials. I will follow up on that.

I am not opposed to chemo per se, I just worry about unintended consequences. When I was on Abraxane my counts all looked good, but I was prone to UTIs and I felt crappy for 10 to 12 days out of every 21. That would have been worth it if the results had "held," but apparently they didn't. So I'm in about the same place in terms of cancer burden as I was 11 months ago. In one sense that's actually good news. I'm not WORSE off than I was a year ago. But I was hoping for a more lasting positive change.

I also want to explore getting a new biopsy of the lungs.

I'll keep everybody posted.

Thank you for the love and moral support.

Amy

Re: What next?
 

Hi Amy, I am so sorry to hear things are "lighting up" again. I hate things 'lighting up"...
Becky suggested Navelbine with H and P, good idea.
Why not Kadcyla again, even if it half worked, but this time with H and P. I read that the combo is better than each one alone. Maybe the dosage has to be adapted if you take the three together. No hair loss.
I am sending hugs your way.

Re: What next?
 

hey Amy. I logged on today partly out of curiosity about how you are doing. I think often of your selfless help to me for years now. I am very upset to hear these lung tumours have reawoken.
There is nobody more informed than you about all kinds of treatments, etc so who am I to give my two cents, but I do agree with the idea of not necessarily staying with your current onco team, but choosing the cancer care centre that has, in your opinion, the greatest state-of-art credibility within the USA. My advice? Put effort into this choice, and then completely surrender to its most effective "bullet" for these tumours. Fast. Hit it hard and strong and FAST. Don't think about it. Once you have put your faith in the right oncologist, surrender and make it happen fast. I need you in this world. This is me being selfish cos I dont want a world where you are not in it.