more lung mets- what to do???

fullofbeans · 05-11-2011, 03:49 AM

Hi all,

I have had a scan results today and all the lung mets have increased (I have 9 mets) on each sides with the biggest one being 9 mm (was 7) another increased from 4mm to 7.5mm and a new one appeared of 2 mm.

I have been on tykerb/herceptin and xeloda for 3 months now..

kind of running out of options.. i really was hoping that with this combo i would at least be stable.. I have been waiting and waiting to post good news but they have not come and every scans since my recurrence have been negative news.. I am getting rather tired and going back to this post helps me remind me that this board is a good place to find some fighting spirit. I am rolling with the punches today tho and can't stop crying..

Any idea, any of you who have had this combo working later and not at the beginning..?

schoolteacher · 05-11-2011, 08:04 AM

FB,

I have been wondering and thinking about you. I am so glad to hear from you today. Sorry about your scan results. Has anyone suggested Navelbine at the center you are receiving treatment from? Please let us know how you are doing.

Amelia

michka · 05-11-2011, 08:40 AM

FB, I am so sorry you have to find another treatment. I don't like to know you are crying. We will help you to fight. I am sure more knowledgeable ladies will come in this discussion but I will share some thoughts.
I don't think the treatment you have now will start working better if you are progressing after 3 months. What did you have before the 3 month treatment with Tykerb/Herceptin and Xeloda? Did you have another Taxane since Taxotere? It seemed to have worked for you. Navelbine with Herceptin may be another option if you haven't tried it yet? I am sorry if I am asking questions but I do not remember what treatment you had in 2010. It would help to know in order to allow our sister "Brains" to think about treatment options. Hugs. Michka

ElaineM · 05-11-2011, 09:53 AM

I am sorry to hear about the lung mets. Several others have mentioned Navelbine. I think it was originally developed for lung cancer. Even though breast cancer is different than lung cancer my view is because it was developed for lung cancer it might work especially well for breast cancer that travels to the lung. I am not sure, but that seems to make sense to me. Herceptin and Navelbine is an accepted combo.
Take good care of yourself.

krisvell · 05-11-2011, 10:06 AM

FOB,
I just want you to know that I am rooting, praying that you will get the right treatment to knock back your lung mets.
Hugs and Love,
Kris......

radiant · 05-11-2011, 10:40 AM

Well, I know it's disheartening, but at least your mets are small in size. Based on your profile, there is still tons of tx options available to you. abraxene, taxol, etc - navelbine, gemzar. I think you need to have had a taxene b4 you can get tdm-1 extended access, but I'm not sure. There's also a new mm-11 clinical trial that's having decent results (targeting the cancer w/herceptin).

HTH,
KIm

chrisy · 05-11-2011, 02:31 PM

I was also going to suggest Navelbine as I know several have had good success combating lung mets with this - and of course you want to continue to target the her2 with herceptin or tykerb.

Agreed, you are dealing with "small" mets, but I am totally with you on how disheartening it is. There are many options.

I do wonder, are you certain these existing mets and the "new" one are really growing? They are all so small, possibly is it just they are picking up a slightly different "slice"?

Pam P · 05-11-2011, 03:15 PM

I don't have other suggestions in addition to what you've received from others. But want you to know I'm thinking of you and hoping to get a good working combo soon. So disappointing to know tykerb/xeloda failed for you in so short of time, but there are many other options so keep the faith and you'll find the one. Keep us posted. Pam

CourtneyL · 05-11-2011, 05:29 PM

FOB - I am so sorry to hear about your progression. Do not lose heart, my dear. You've got plenty of options. Our stories are similar. I too progressed while on Xeloda and had a reoccurence in the lungs. Gemzar took care of them the first time and was an easy chemo for me to tolerate. The buggers came back in the lungs this February and I started on Gemzar again. So far my tumor markers have been plummeting so we think it is working on the lungs once again. I'll scan next week to confirm. If Gemzar is an option, I would highly recommend this drug to you. It can work. You'll find something. I KNOW it!

Elizabethtx · 05-11-2011, 08:49 PM

I have no further suggestions, but want you to know I am crying with you. This disease is an awful place to be. My hope is that you know you are not alone. We are praying and hoping that some new drug combination will be the answer! Hang in there, stay strong and fight to get the care you deserve.
Many hugs,
Elizabeth

Jackie07 · 05-11-2011, 11:24 PM

FB,

I did a web search using the following combination “DOC and Her2 breast cancer lung metastasis” and found this slide presentation:
Targeted Therapy for HER2 Overexpressing
www.primeoncology.org/Files/Doc/SLIDES/EPBreastBarcelona09/006Case5Aapro.pdf

Also, there's an impressive long-term survival case [found through PubMed database search] reported by a hospital in Japan. Notice that she's also Her2 positive and ER, PR negative:

Gan To Kagaku Ryoho. 2010 Nov;37(12):2760-2.
[A long-term survival case of local recurrence of breast cancer treated with combined modality therapy].

[Article in Japanese]
Katsuta E, Ohkubo T, Someno Y, Saguchi M, Aoyagi H, Takahata T, Hasegawa K, Hamada S, Kaneko J, Maejima S.
Source

Dept. of Surgery, Hasuda Hospital.

Abstract

The case was a 70-year-old woman. In 1997, the patient underwent pectoral muscle-preserving mastectomy and axillary/subclavicular lymph node dissection for the treatment of right breast cancer. Histological diagnosis was invasive ductal carcinoma (T2, N2, M0, Stage IIIA). She received a combination therapy with TAM and UFT for 5 years postoperatively. Because tumor recurrence occurred in right axillary lymph nodes in the 9th postoperative year, the patient underwent resection of these lymph nodes followed by 6 cycles of AC-based chemotherapy.

Multiple lung metastases occurred in the 10th postoperative year, and then, the patient received 8 cycles of DOC-based chemotherapy. In the 11th postoperative year, a mass appeared again in the right axilla, and 6 cycles of capecitabine-based chemotherapy was administered. In the 12th postoperative year, pulmonary metastasis was in progression and an increased right axillary mass were noted. Thus, the specimen extirpated in 2006 was examined again, revealing negative ER, negative PgR and positive HER2.

Six cycles of combined trastuzumab+PTX therapy were administered. Lung metastasis decreased in size, allowing a judgment of partial response. Because the right axillary mass had grown to 10 cm, and the patient's QOL was reduced, it was extirpated. The patient is scheduled to receive a postoperative radiotherapy, followed by resumption of chemotherapy.

Hang in there. We are fighting alongside you.

PinkGirl · 05-12-2011, 10:37 AM

Sorry to hear this news FOB ... I don't have any chemo advice but
I'll keep all my fingers and toes crossed for you ...

Ceesun · 05-12-2011, 02:32 PM

Is cyberknife an option for you? Seems to be the latest big buzzword in my area. Ceesun

JeanBeanie · 05-12-2011, 04:12 PM

FOB
I was just recently Dx in March - I am stage Iv (lung, Liver and Bone) I had a partial hip replacement - after that my doctor started me on Hercpetin and Navelbine - she said with those two together showed 80% rate in treatment working. It is every week Herceptin and 3 weeks on and one week off for Navelbine.
Ask you doctor why not Navelbine -

Catherine · 05-12-2011, 08:35 PM

FOB and JeanieBean...are you related??

So sorry to hear about the progression, FOB. Thank goodness there are ladies on our site that can offer some good advice. I am hoping and praying that the doctors can find the right meds for you. Take good care. Your US support team is here.

Hugs, Catherine

Adriana Mangus · 05-12-2011, 09:38 PM

Hi FB,

When I was dx with a recurrence in 2003 I was placed on Navelbine+herceptin and it worked for two years!!
Have you asked your oncologist about this drug? From the posts I have read it works for most of us Her2+.

Much Love to you. Sending you a HUGE HUG!!!!!!!!

Adriana

fullofbeans · 05-13-2011, 03:02 AM

Dear ladies thank you so much for all your advice,

yes I had thought about navelbine (which I can get) or indeed to some form of laser treatment (but money is an issue here) as I would be surprised that laser treatment would be on the NHS. Not only we have to fight we this awful desease but for many of us we have to fight to get the treatment that would be most appropriate, it is very tiring..

I know I should not care but do you lose your hair on Navelbine? and what are the most common side effects, at least xeloda is/was quite easy.

And yes Chrisy you are right they are small and are to tell about new one being a new one since it is quite small

Thank for your good thought I am slowly regaining faith in a potential victory, you ladies are fighters

Much love XOXOx

PS and no I am not related to jeanybeans

JeanBeanie · 05-13-2011, 04:43 AM

Morning FOB's
You do not lose your hair - it might thin out if you are on the medicine for a long period of time, what I did is cut my hair short. It does cause constipation. Hope this helped - best of luck and my prayers are with you.

greenacres · 05-13-2011, 09:16 AM

I'm so sorry to hear about the progression. My thoughts and prayers are with you. Do you mind if I ask you a question? I see you started at Stage 1 - did you have any symptoms when you progressed? I am having some things going on and I don' tknowi f I should call my onc before my 6/7 appt. I'm just curious if you felt really, REALLY tired, had body aches, bone aches, and where, etc. Again, from reading all the other posts, it looks as though you have quite a few treament options still available to you. I am also Stage 1, Grade 3, Her 2+++ and er/pr neg. GOod luck to you. Sandra

DeenaH · 05-13-2011, 10:56 AM

First, I am so sorry. I am waiting for yesterday's PET/CT results, and am hoping for continuing stability in my lungs, but know the time will come when Tykerb/Herceptin won't be enough. I haven't read all of the other suggestions, but I noticed you had done the peptide vaccine in Seattle. There is a newer trial with the Tcell infusions especially for people who have already had the vaccine. Might be worth looking into. Also, what about TDM-1?

There are so many new things coming down the pipeline for HER2. Hang in there...you'll get through this too! You know you aren't alone.