Help!!!

WayTooYoung · 01-09-2013, 07:34 PM

Hi everyone,

It's been a long time since my last post...and I am afraid I need your help again my dear Her2 sisterens. A year ago around this time I was diagnosed with recurrent BC (two months after I finished treatments!!!) I was completely devastated as my Onco told me to get a bucket list. Somehow, I pulled myself together and enrolled into the TDM1 trial which gave me a good run of NED. Unfortunately, it's back again so they pulled me off the trial. I am turning 31 this weekend and am sad because it seems like ever since I turned 29, I can't get past a birthday without having to worry about this BS coming back!

My onco is recommending the next line of treatment, any feedback would be appreciated as I have to make a decision in two weeks.

Option:
1) monthly injections to induce menopause+Femera
2) remove ovaries + Femera
3) Herceptin + Navalbine

To be honest, I am hoping to find another trial that either offers targeted treatments or has minimal side effects. I am a teacher and cannot afford to be off work.

Sisters, I need all the help I can get, prayers are welcomed too. God Bless.[/SIZE]

Bunty · 01-09-2013, 07:42 PM

Sorry that you've had progression WTY. I don't have experience with the options that are being suggested for you, but as you know, someone here will be able to offer good advice. Sending you support and hope.
Best wishes, Marie

Becky · 01-09-2013, 08:06 PM

You are very young to get the ovaries removed but the shots do shut them down very well and then you can use the Femara. You can always get them removed later but you can't get them pasted back in.

What about Faslodex? I am not familar with the effects of Navelbine, only Herceptin so I can't chime in on that.

cheery · 01-09-2013, 08:18 PM

I'm so sorry about the local recurrence.

I'm not ER/PR+ but from what I've read, doctors try to start you out on hormonal therapies first to maximise and stretch out your treatment options as much as possible. Chemo comes later as it is considered to have more side effects.

My first chemo was Navelbine with Herceptin and that put my liver met straight into NED. I'd enjoyed 4 years of NED but recently had a recurrence of the same liver spot. I'd a great QOL with Navelbine, other than constipation and low WBC. No hair loss was a bonus!

Trust others who are ER/PR+ will have more to share and good luck with your decision.

WayTooYoung · 01-09-2013, 09:17 PM

Hi Cheery,

Thank you for your reply...so if you are not PR/ER+ and Navelbine and Herceptin worked for you...will it work for me if I am PR/ER+?

WTY

Pray · 01-09-2013, 09:26 PM

I am so sorry the tdm1 ran out on you. I pray the next tx plan helps you to get to ned. Please know that you are in my prayers. Gods blessings to you and your family. peace my friend, Nancy

Jackie07 · 01-09-2013, 09:39 PM

Can you go ahead with Herceptin/Novelbine while getting the shots to shut down the ovaries? Surgeries promotes angiogenesis and can help cancer spread, I would avoid surgeries if there are other options.

Once the ovaries are shut down, you can then try Femera and see if it helps control the cancer growth. Seems many members go back and forth on hormone therapy and Her2 treatment.

Not sure if there's time for a 2nd opinion from other oncologists in the field ...

dchips1 · 01-09-2013, 09:42 PM

Herceptin is number 1 priority to start right away!! I was er/pr neg but putting yourself into medicine induced menopause, sounds more reasonable than surgery right now. Herceptin and Navelbine has been used together for quite a few years. That is my next drug if I continue to have problems with the Xeloda. The biggest drawback of Navelbine is the foot neuropathy.

You are way to young, so get your fight on and get back on Herceptin, a whole bunch of us have been on it for years.

Prayers for your decisions, and healing, and for the children that you teach.

Darita

cheery · 01-10-2013, 06:37 AM

Hi WTY

From what I've read and what my several oncos (I've gone for several 2nd opinions in the last few years

), HER2+ BC is mainly driven by HER2+ gene more than ER/PR+. That's why the addition of Herceptin is so important to arrest the HER2+ BC.

I was actually ER/PR+ (via biopsy) upon diagnosis of the liver met 4.5 year ago. My onco then immediately started me on Herceptin and Navelbine, no hormonal treatment. I'd a mastectomy after the chemo. That's when the pathology changed to ER/PR-. Her2+ status never changed.

That said, I can't conclude if Navelbine will be effective for you..hope you'll understand. Recent research has shown there is good synergistic effect between Herceptin and Navelbine. Another golden standard of care for HER2+ BC is actually Taxotere, Carboplatin and Herceptin. I'm on this combo now (Taxol instead of taxotere) and have seen regression in my liver met, which I'm very thankful for.

Hope this helps.

yanyan · 01-10-2013, 06:10 PM

Hi, WTY. Sorry to hear about your recurrence and you are definitely not alone ! Where exactly is your recurrence? Are they in the same place chest wall, muscle ? If there are multiple recurrences, surgery does not sound like a good option, radiation in this case may work better; I agree that a her2 targeted drug should be added back to regime, maybe tykerb? There are still many options you haven't tried. As for ovary removal, you may want to start the shot to shut down ovaries first and see if that would change anything. My hugs to you and hope you will get things under control soon !

PS. who ever told you to get your bucket list is a total idiot.. a regional recurrence = bucket list ??? This idiot doctor has no heart !!! I wish he had better things to say, if not he should keep his mouth shut !

WayTooYoung · 01-10-2013, 09:33 PM

Hello everyone and thank you for all your sound advice. Your strength, positivity, and encouragement is so helpful during this tough time. I already feel much better knowing that I have Her2 sisters that can share in my experiences.

The new recurrence is in the EXACT same spot as my biopsy scar from my 2nd recurrence (chest wall). I was hoping they could just extract it and I can be on my merry way...guess its not so simple eh?

I am still undecided as to what I should do, but feel a little relieved to know that Navelbine is not going to make me vomit a violent storm. I got FECT the first time and the side effects were so horrific that I thought literally I was going to die from it. DRs said they have never seen a patient with more adverse effect then me. It was so bad that I developed such a negative association that I would throw up just being near the chemo ward.

roz123 · 01-10-2013, 09:57 PM

WTY - im sorry about this setback and hope you get the right combo for you. I remembered your post because so few on the boards have FEC then I saw you are from T.O.
Im also in Toronto - where are you being treated? im at sunnybrooke
My doctors said the exact same thing about my reaction to FEC -I was hospitalized 2x with it

WayTooYoung · 01-10-2013, 10:09 PM

Yes, I am from T.O which is why I do not get Tykerb unless I am deemed Herceptin failure (see Yan Yan's post). I did my RAD at Sunnybrooke. My Onco made a referral for me to see Radio-oncologist next week to see if it can be an option. I am also seeing a surgeon at the WCH to see if surgery is feasible. She is giving me a couple of weeks to decide what to do...so much is happening so fast.

I heard that Dr. Sunil Verma has a new trial with M-Tor inhibitors? Not sure what that is, but it sounds promising for us girls.

Paula O · 01-11-2013, 03:40 AM

Happy Birthday this weekend, WTY. I'm sorry about this setback. Here's to a a healthier year ahead for you.

Paula

roz123 · 01-11-2013, 09:04 AM

WTY if you go to sunnybrooke see if you can get the head of radiation onlcology - Dr Eileen Rakovitch. I met with her and loved her

yanyan · 01-11-2013, 11:12 AM

Hi, WTY.. Happy Birthday

I would like to share with you and everyone what my radiologist said about my recurrence to skin. ( he thinks it might have been a chest wall recurrence had not there be an expander ).

Anyways, the surgeon at Ceder Sinai recommended radiation. So i went to see the radiaolgist who is down to earth and old school. He said if there is still active cancer, a non skin sparing mastactomy surgery would not be an option for me unless there is enough skin to close the wound. When there is active cancer in my skin, it prevents the normal skin from healing. If we need a skin graft since i initially had a skin sparing mastectomy, the cancerous skin won't accept the good skin. i guess the bad one will eat up the good one. but again he would not want to give me radiation unless there is no other option. Twice radiated skin is not fun !

So he told me to get a PET scan and if PET scan is negative for the suspious thickening in my skin ( not sure if its the fold of the expander ), then i need to see a surgeon who will perform an excisional biopsy on it. If both negative, i can be a candidate for non skin mastectomy. If positive, i need to deflate the expander and get radiation.

In your case it sounds unlikely surgery is an immediate option. My guess is they will still have you on chemo maybe another regime to see how well you respond. Radiation is reserved unless chemo does not work.

Hugs to you and hope you have a wonderful birthday !!

Mandamoo · 01-11-2013, 02:44 PM

Hi WTY - I'm so sorry to here that tdm1 stopped orking. I would be making sure you have some herceptin in ere. Navelbine is very tolerable and has wiped it out for many. Wishing you a happy birthday!

KsGal · 01-11-2013, 03:09 PM

First of all, Happy Birthday. I sure hope all your birthday wishes come true, and this will be the year you wont have to deal with this nasty disease anymore. Absolutely the Herceptin. It held me stable for seven months, maybe more since I don't have scan results yet. But I know it can just melt it away for some people. I have heard good things about Navelbine being pretty tolerable and effective too. But, if you could get the shots and shut things down without doing an actual chemotherapy, and continue to feel pretty good and work I would think that would be wonderful. Does the doctor think any single one of these options is much above the other two? Im just so sad the TDM1 stopped working for you. ((hugs)) Lots of prayers and positive energy coming your way. Please keep us updated on what

Cure4Cat · 01-11-2013, 07:06 PM

I am so sorry to hear what you have had to face. Unfortunately, I do not have any advice on the options that you were given. I am shocked at what your oncologist said. I have a friend who is Her2 + and she recurred as well. I wanted to let you know that she has been NED for quite a while now post-recurrence and is doing really well. I see that you are in Toronto, I am in Ottawa. I wanted to let you know about Rethink Breast Cancer in case you had not heard of them. They run programs for women with breast cancer who were diagnosed under 45. I volunteer with them here in Ottawa. Please give them a call if you have not already. They can be very helpful! Just Google them and you can find their contact info. I will be praying for you and wish you a lifetime with NED. Take care.

WayTooYoung · 01-12-2013, 08:40 AM

Thank you for all your support. Two questions I have this time...why is surgery bad? I can feel the lump on my chest wall, wouldnt it be easier to just extract it? This way, there will be less to clean up or "treat"? Second question is besides induce menopause/remove ovaries + Herceptin/ femera vs. Herceptin/Navelbine, has anyone had any other combos that are easier to tolerate? I don't have children yet and hope to have some one day. Also, I'm scared to lose my hair again. I dunno, I am just feeling pretty confused. Times ticking. Yesterday would've been a tdm1 treatment day for me...now that they stopped it, i feel abandoned and without defense. Scared it will spread and grow more now.