more lung mets- what to do???
 

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..?

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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.

Re: more lung mets- what to do???
 

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......

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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"?

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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!

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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.

Re: more lung mets- what to do???
 

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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 -

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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.

Re: more lung mets- what to do???
 

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

Re: more lung mets- what to do???
 

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.

Re: more lung mets- what to do???
 

No Sandra I did not feel anything until my lymph growth..I had felt something in my breast tho before but they never saw it on scan (but it was there they did not look properly).. get things checked is a good policy..

TDM-1 not sure can have access to it but yes still looking at options. yes tykerb herc is only a transient treatment but for few its enough so may you be one of these.. yes the Tcell treatment could be an option if they accept me my Tcell counts is low..

again thanks for all the messages

Re: more lung mets- what to do???
 

http://www.medpagetoday.com/MeetingCoverage/ASCO/20504

My mom (metastatic breast cancer to skull, bones, lungs and liver) is taking navelbine + herceptin + everolimus and it has worked to an extent for her. Xeloda/Tykerb combination didn't work for her and this was the only option we had left. Her tumor marker has halved in about two months, and the disease is stable at the moment. Tumors in the liver has shrank a bit too.

Don't know whether it will help with lung metastasis, but can't hurt to ask you doctor.

Re: more lung mets- what to do???
 

Hi FOB,

It's me, your Seattle buddy chiming in on the joys of Navelbine. My hair thinned, but it wasn't really obvious to others. I had stomach issues with Navelbine, but Nexium helped quite a bit. All in all it was a good chemo for me. I didn't stop or even have to slow down. I know it will do the job for you!

Hugs and prayers!

Re: more lung mets- what to do???
 

Dear FOB,
Any time we stop responding to treatment it is an awful feeling and hard to deal with.
After a good long cry, perhaps you can find it within yourself to start soaking up knowledge again.
Call Seattle and let Dr. Disis know that you are not responding to treatment. She may suggest a follow up trial. If I remember correctly, she said she would recommend a conventional treatment then schedule you for a followup for a reinfusion of your kicked up t cells to give the cancer a one-two punch.
And finally, when I had mets to all 4 lobes of my lungs, I received Herceptin and Navelbine. Within 6 months, I was NED. That was 7 years ago. Navelbine isn't bad. I didn't lose any hair. As long as I stayed on top of my blood counts and got my Procrit, I felt fine. It certainly is worth an ask; right?
Hang in there angel and stay with us. Tell us what direction you chose and how you do.
Love and Hugs,
Kim from CT

Re: more lung mets- what to do???
 

Hi FOB,

Was looking to see if you had made any choices on the treatment plan. Adding my prayers and best wishes...

hugs,
shobha

Re: more lung mets- what to do???
 

I recently found out I have a lung met too,it's about 1.3cm.I was told there is a trial if you have not had chemo yet for the second time,which I had already had so wasn't able to participate at this time.But,my dr is very hopefull ,as am I that this new drug will become available very soon! So for now I'm on Tykerb/Herceptin. If I find out the combination they are using in this trial I'll let you know! Your not alone,I'll be praying for you! I was only 32 when I started this long journey,keep fighting!

Re: more lung mets- what to do???
 

FOB
Another vote for Navelbine....I did not have lung mets, but I did have a response from it, and felt it was very easy to tolerate, except for indigestion...Nexium took care of that....stay strong, you still have many options, and we are here to support you and lift your spirits.

Re: more lung mets- what to do???
 

Have your doctor check into Navelbine that is what I am currently taking for lung and liver cancer. Be pushy - it is your body. Keep us all updated - you are in my prayers.

Re: more lung mets- what to do???
 

Additional info on lung mets:
http://her2support.org/vbulletin/sho...ight=lung+mets

another lung med that can be used on BC:
http://her2support.org/vbulletin/sho...713#post225713

Re: more lung mets- what to do???
 

I am not sure yet what my next move will be. the growth is slow but still a growth,but slow. Not sure if i switch to navelbine hercp i may not find a bigger growth. I had progressed when chemo naive at my first rounds of FEC. Taxol still an option I suppose but somewhat I am reluctant to go though that again (did lots of taxoter in 2006, and just 1.5 round bit of taxol this time, enough to loose my hair.. last year) could add rapamycin (its cheap could not do everolimus).

My breast node is smaller and may potentially be regressing (poorly vasculerised). So I have a bit of a action from current combo. or not I had cryosurged the area last year so scan difficult to interpret.

btw how is navelbine taken iv weekly, tablets ??

I may again try to target the mets directly again, it has worked for me so far, but involve financial implication to sort for that and honestly I am very tired mentally by all this at the moment.

But I look very well by the way, people keep on telling me how healthy I look. So that's alright, more than alright

Thank you all for your encouragements and knowledge

Re: more lung mets- what to do???
 

navelbine - I was taking it IV 3wks on one wk off. But last Tuesday my wbc was low - so they changed it to 2 weeks on to see what happens.

Re: more lung mets- what to do???
 

Reread your Dalai Lama quote, I think you need it right now! I know it is exhausting, but take it one step at a time. We are cheering and praying for you! Hugs!
Elizabeth

Re: more lung mets- what to do???
 

FOB
Have you thoroughly researched ALL clinical trial options here in UK? A lot aren't widely advertised and depend on your onc. Similarly have you looked at all the targeted/local treatment options. There may be a financial implication if you have to travel but otherwise should be free.

Ellie