Sisters with Mets...should I stop Herceptin? - Page 3

10-02-2011, 05:51 PM

Thank you StephN for your reply. I was really looking forward to hear from you, and i am so happy for you and christine.
Mary L are you still ned too? I hope so. Do you all consider yourselves cured??
Also, did anyone hear anything from AndiBB? her story is really inspiring which is what we need in this thread. I hope you all continue to do very well and stay ned for many years to come.
Ema

sarah · 10-03-2011, 06:50 AM

Hello Kim,
I can attest to the fact that Stephanie is doing great having just seen her here in France.
Glad to hear you're doing so well. As for the question, I think the advice to take your time is a good idea. You know Herceptin works for you and you've been NED for a long time now so whatever you decide seems to be more on how you feel and how confident you feel tests are for you.
Eventually I think you'll want to go off it but wait until you feel you're ready. Don't do it if you're anxious about going off it.
Take care,
Health and happiness
hugs and love
Sarah

mamacze · 10-05-2011, 09:52 AM

Warm Greetings to Kim and Steph and Sarah and All,
I am so glad to hear you are doing well and I apologize for my tardiness in responding. For some reason, my computer did not alert me to your posts....could be a lack of cookies as I have recently switched from a Dell to a MacBook Air.
Steph - traveling around France?! How wonderful! Next time make room in your suitcase for me !! And the icing on the cake..you got to visit Sarah! I am pea green with envy!
A quick update....I have been off Herceptin since June 2011. I have had 2 blood tests since (Veridex - circulating tumor cell - cell search); in both cases; my test result was ZERO...ie, ZERO circulating tumor cells detected!). I will keep you posted as we proceed...hope always springs eternal. Hang in there Stage 4 sisters....hope springs eternal for all of us....
Love and hugs and warm thoughts for a cure,
Kim (from CT)

Ellie F · 10-05-2011, 10:00 AM

Kim
I was only talking about you today to my chemo nurse so lovely to hear from you. Glad things are going so well and I pray you will remain herceptin free and NED.
Do you feel any different now you are off herceptin? I believe like a lot of drugs side effects on herceptin are cumulative so would be interested to know if you now feel any different?
Hugs
Ellie

StephN · 10-05-2011, 10:42 AM

Hello Kim -

Glad to hear from you that all is well.
A MacBook Air - now I am the one who is pea green ...

As for any differences I noticed after being off Herceptin for a while - my nails grew better and I seemed to get a little more energy. There was also a pshychological lift that happened once the realization set in that I did not have live my life around frequent cancer center appointsments.

It is also helpful for traveling when you want/have to be away for more than 20 days.

All the best my east coast friend!

mamacze · 10-05-2011, 11:06 AM

Hi Ellie and Steph,
Ellie, I have a good feeling for you; may you, and all of the angels on this site; be blessed with a long, lingering dance with NED.
Do I feel any difference now that I have been off Herceptin for 4 months? StephN said it: ENERGY, energy, energy! Kicking butt in my mixed martial arts class like it is nobody's business! Stronger nails! And yes, a huge psychological lift that comes with going for days and dare I say even weeks, without thinking about cancer...even once!
What hasn't changed? Joints are still sore....nose still runs non stop (guess that is just a function of age...!)
Love and Hugs,
Kim (from CT)

KDR · 10-06-2011, 02:52 PM

Kim, you are everything I want to be! Stay well, dear one,
Karen

kstrahm · 03-08-2013, 10:01 AM

I was glad to have stumbled upon this thread and to read all of your experiences. I have been stage IV with liver mets since April 2006. I started with Taxol, Carboplatinum, Herceptin, Femara and the Lupron shot. After about 7 months I went to only Herceptin, Femara, and Lupron. Last year I had a hysterectomy due to Lupron failure and have been on just Herceptin and Femara. The Herceptin over the past few years has been giving me severe side effects - consisting of neuropathy which has progressed to the point of me feeling burning, tingling, numbness in hands, feet, legs, arms, even the tongue and throat as well as constantly dropping things and losing my balance - I have dizzy spells from it and pressure in my head. I have no energy whatsoever and extremely sore upper back and neck.

I have been trying to fight this and stay on the Herceptin but it has came to the point where my onc and I have decided it is time to take the jump off the cliff and see what happens. I have been NED for almost 6 years so we will see. I am extremely nervous but my body needs a break. I hope the break lasts a long time and it has been great reading the stories of the other women on this board who have gone before me. I am hoping for a continued long run on NED but if it comes back at least a break for a time will be nice and maybe I can try to get my body back together before then.

I sort of feel like we are all writing history and that years to come based on all our choices and experiences that those that come after us will have more information to go on.

Ellie F · 03-08-2013, 10:21 AM

Hi kstrahm
I have been on herceptin since 2008 and totally understand where you're coming from. Most of the symptoms you describe are the same as I am experiencing. The only difference seems to be that my neuropathy is not as severe as yours.i truly believe that herceptin side effects are cumulative.
The question of staying on or coming off herceptin is so difficult. My own onc believes that if you are NED at stage 4 for over 5 years then its time to come off. He says he has a number of patients who have come off before this time and remained cancer free and others that did herceptin to five years and also remained NED. It very much feels like this cancer journey is a lottery.
Good luck with your decision, please let us know how it goes
Ellie

Lauriesh · 03-08-2013, 10:33 AM

Hi kstraham,

I am in the same boat as you, except that I have only been Ned for 2 years. My neuropathy is getting worse, so I have decided to take a break. We will follow my tumor markers and scan in a few months, and hopefully the break well help side effects go away .

My plan is not to stop completely but maybe get just 5 or 6 doses spread out through the year.

Lurie

kstrahm · 03-08-2013, 02:11 PM

Hi Ellie - thanks for your response. It is helpful to me to know that others are experiencing neuropathy as well. When it first started for me I think it took a while before my onc. would believe that it was from the Herceptin.

It just seems to me there is not much research out there for people who have taken Herceptin long term and how it affects our bodies. I as you truly believe it is cumulative. I do hope that your neuropathy does not increase as mine did.

I will be updating here over the months as I get scans and let everyone know how it goes. I hope that all goes well with you and that if your time comes to stop Herceptin that you will know when and will have peace about it. It is encouraging for me to hear that your onc. has had some patients off after 5 years that are still NED. I think you are right it really does seem to be like a lottery in this crazy world we call cancer.
Hugs to you!

kstrahm · 03-08-2013, 02:16 PM

Hi - thanks for your response it seems like you are in the same boat I am in with the neuropathy. As I mentioned above to Ellie it is good to know others are experiencing the same side effects I am in regards to neuropathy. I just don't think the long term side effects are really widely known yet. We are blazing the trail!

I hope that your break helps you and am glad you have a plan. For now we will be doing scans and lab about every 8 weeks to keep an eye on it. I am hoping for some good quality time before anything shows but am glad the onc. is keeping a close eye on it. Good luck to you and let us know how you come out.
Hugs to you!

Emy · 03-08-2013, 09:04 PM

Kim....
I would get a second and a third opinion before stopping....In my opinion, I would be afraid to stop, for fear of recurrence......
Eileen

Whonoze · 03-08-2013, 10:53 PM

I began Herceptin in February 2007. Have been NED since completing it and chemo. Have remained on. Spoke to my onc last week about going off. Not that I'm anxious to do that. She encouraged me to stay on. Because I was Stage IV from the git go, and it had gone into my liver and bones.

I have an easy time with it. Runny nose, bad nails. Don't really know whether it is affecting my energy level. Since, some lessening of my energy is thankfully due to age.

I am very grateful and am awfully happy to be here and to be discussing making the choice.

CoolBreeze · 03-16-2013, 04:31 PM

Wow, I'm jealous of all of you who have hit NED, and for years too. I haven't been NED once and herceptin, perjeta, my 7th chemo, I just keep progressing. All I want is to see my son graduate from high school next year but it is not looking good for me.

I start TDM1 next. Let's hope that's the miracle for me you all got.

Joan M · 03-26-2013, 06:28 AM

Ann, I'm praying that T-DM1 does the trick for you for NED, like it has for other women on the board. Hang in there, girl!!

I complain to my onc that H is ruining my nails, but he disagrees. Otherwise, my symptoms from H have been moderate, and thankfully my heart has been holding up. I get an echo every 6 months.

I also wonder about when I would consider stopping H if I continue to be NED. I've been NED since October 2008. My cancer advanced to stage 4 in January 2007, and I have been on only H since it advanced because I chose local treatments to remove the nodules. My onc offered Xeloda (6 months) and Tykerb, but I turned them down. I often think about a vaccine trial, but I'm afraid to upset the apple cart. My body seems like it's in some kind of balance thus far (who knows?), and I'm afraid that a vaccine could counteract that. I had CT scans of the chest, abdomen, and pelvis a few weeks ago, and all is still NED.

It seems like a mixed bag of whose tumors come back, and I'm not sure whether that's tied to how long you've been on H. It might just be individual.

Joan

mamacze · 04-07-2013, 09:42 PM

Hi Girls,
Forgive me for not updating this thread. I kicked up my heels for only eight months because a scan in Feb 2012 showed a return of tumor in my lungs. In a blink I was back on Herceptin. For me it works. CoolBreeze - I am fervently thinking of you and am filled with hope that T-DM1 will be your charm. You are bright and tenacious. Knowledge is power. I feel like you are heading toward a good long break.
Love and hugs,
Kim (from CT)

laura4252 · 04-11-2013, 03:23 PM

Kim from CT, Can you please give us an update on your status since you posted in 2012? Your diagnosis is very similar to mine, however I never did the taxanes since I'm allergic to them. Have used Herceptin only, some Navelbine and Gemzar in 2012, and now on 4th cyle of TDM1, and having excellent response (breast tumors 1/3 the size they were). Thanks Kim

mamacze · 04-11-2013, 04:49 PM

Hi Laura4252,
I am so happy to hear you are doing well on TDM1. My oncologist says that TDM1 will likely be my next line of treatment when my mets start to act up.
I continue on Herceptin infusions every 3 weeks. That is it. Except for my one short 2011 holiday from Herceptin, I have been getting Herceptin infusions since May 26, 2004. The one small tumor in my lungs remains - and is stable. It doesn't get bigger or shrink thus far. I had a biopsy done on that tumor. It has a PIK mutation and there is an off label drug that has shown some promise against that type of mutation if I need it. And while the Herceptin isn't intended to address a PIK mutation, the tumor is behaving. So we figure, if it ain't broke....
I will keep you posted.
And YOU, hanging in there and doing so well - are you experiencing any side effects from TDM 1? How are you and your family handling all of this?
XO Kim (from CT)

Andrea Barnett Budin · 04-11-2013, 06:52 PM

Well, I am surely late to this party. Sooo sorry. I was reading away just now and around page 2 I noticed -- 2011...???!!!! I kept on reading.

Just reporting in, as I wish those who are not NED prayers and hopefully some inspiration.

4th stage from the getgo (1995). Recurred in August of '98 throughout my liver. Terrified. Only then did they test for HER2 which I asked for, having kept up on the bc world as a highly interested recovered patient, or so I thought. Tested 80% positive. That's how they graded it back in the day. And I was glad at that news, since Dr. Slamon had not only isolated that misbehaving gene but helped develop Vit H to correct it. Despite the horrid statistics I felt I had genuine hope.

I did Taxotere for 9 mnths (ev wk for 6 wks, off for 2). Added Herceptin 2 mnths in, to make sure the Taxotere was working. It was shrinking my multiple tumors. Onc was having radiologist measure ea and ev one. I'd gather my reports and compare.

Was on Vit H from Nov of '98 till July of '08. June scans will PLEASE say I am still STABLE. Blood work in January attests to that potential outcome.

I WAS PREPARED TO REMAIN ON VIT H FOR THE REST OF MY LIFE, WHICH I ALWAYS SPECIFIED WOULD BE A LONGGGG LIFE FULL OF HEALTH AND LOVE. MIGHT AS WELL BE SPECIFIC IF WE'RE DREAMING, RIGHT?

ABOUT 5 YRS OUT, MY FAV ONC SAID I COULD STOP H. (HE SAID HE'D JUST ATTENDED A CONFERENCE WHERE DR. SLAMON SAID 5 YRS WAS AS GOOD AS 10.) I WASN'T READY. IF IT ISN'T BROKEN, BLAH, BLAH, BLAH... MY OTHER ONCS CONCURRED WITH ME, AS DID MY HUSBAND. MY FAV ONC WENT TO UNIV OF TENNESSEE TO HEAD THE ONC DEPARTMENT, BE A PROFESSOR. THAT WAS WRENCHING. HE RETURNED TO BOCA 5 YRS LATER.
I RAN TO HIM OF COURSE WITH OPEN ARMS. AND I KNEW -- FIRST THING AFTER HUGS WAS -- YOU HAVE TO GET OFF OF H. I THINK I WAS READY.

NOTE: FOR THE FIRST 3 YRS OF BEING ON H, I WENT WKLY. AFTER 1 YR MY FAV ONC SAID, THEY'VE DONE STUDIES IN FRANCE AND YOU CAN GET TRIPLE THE DOSAGE EV 3 WKS. VERYYYY TEMPTING, BUT NO. I'LL WAIT. I WAITED 2 YRS TO MAKE SURE EVERY ONE OVER THERE WAS STILL ALIVE. THEN I GRADUATED TO EV 3 WKS FOR 7 MORE YRS. I AM CAUTIOUS!!!!!

I STOPPED H IN JULY '08. I WAS GETTING SCANS AT THAT POINT EV 6 MNTHS. LAST YR I GRADUATED TO ANNUALLY. MY EV 3 MNTH BLOOD WORK BECAME EV 6 MNTHS. IT WAS SCARY, I'M NOT GOING TO LIE. BUT I MOVED FORWARD WITH A DEGREE OF COMFORT. I SEE MY ONC EV 6 MNTHS. I GET A SONO W/MY ANNUAL MAMMO (UNILATERAL), WHICH STILL BEFUDDLES ME. I THINK OF MY LEFT BREAST AS MY LEFT BREAST. THE MEDICAL WORLD SEES IT AS A STOMACH I SUPPOSE, AS THAT IS FROM WHERE IT CAME (TRAM FLAP).

I SAID TO MY HUSBAND, IF I WERE TO GOD-FORBID GET CANCER THERE -- WOULD IT BE STOMACH CANCER??? WE LAUGHED. WE MUST KEEP LAUGHING...

AFTER H THE BIGGEST PERK WAS UNEXPECTED. I WAS SOOOO ACCUSTOMED TO GOING EV 3 WKS (ALWAYS BROUGHT BAGELS FOR EVERYONE W/CREAM CHEESE, THEY LOOKED FORWARD SO TO MY VISITS!!) THE BREAK FROM SEMI LIVING IN THE CHEMO ROOM WAS EXHILERATING. I HADN'T REALIZED WHAT A TREMENDOUS PSYCHOLOGICAL TOLL THAT FAMILIAR TRIP WAS TAKING ON MY PSYCHE. FINALLY, A REAL VACAY!!!!!!

THIS IS WHAT I PRAY FOR FOR EVERY ONE OF MY SISTERS.

I DO MY SUPPLEMENTS TWICE A DAY, EVERY SINGLE DAY, SINCE OCTOBER OF '98. FOR ALL THE REASONS I MENTION IN MY THREAD -- WHY I TAKE SUPPLEMENTS, IF YOU'RE INTERESTED.

I MEDITATE. EVERY DAY.

MY FINGERNAILS WERE AWFUL ON H. MY ENERGY IMPROVED OFF H, BUT I SUPPLEMENT. (I TAKE POWDER FOR CHRONIC FATIGUE AND B-12 SUBLINGUALLY EVERY DAY, PLUS, PLUS, PLUS...)

THE NEUROPATHY I HAD WAS TRULY PAINFUL BUT THAT STOPPED WHEN I STOPPED TAXOTERE.

EVERY BODY IS DIFFERENT. EVERY CANCER IS DIFFERENT. EVERY REACTION TO MEDS IS DIFFERENT. I FERVENTLY PRAY YOU EACH FIND YOUR PERFECT RECIPE FOR SUCCESS. WITH ALL MY HEART, THAT IS WHAT I WISH FOR YOU.

SO THIS JULY WILL BE 5 YRS OFF OF H.
I SERIOUSLY BOUGHT A SMALL PEWTER FIGURINE, ON BENDED KNEES, ARMS OUTSTRETCHED, PALMS DOWN, FOREHEAD TO THE GROUND -- TO REMIND EVERY SINGLE DAY -- TO LOOK UP AND SAY THANK YOU. THANK YOU FOR MY LIFE.

SENDING BLESSINGS AND HEALING LOVE AND LIGHT TO EACH AND EVERY ONE OF YOU...
Andi