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Topic: Should I ring the bell?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Oct 20, 2011 03:52AM

Joanne_L wrote:

At the cancer clinic I go to, they have a bell - like in a bar when you have to pay for a round.  I wish!

 Anyway, they make you ring the bell when it's your last chemo (this is my last round after 4 months of it).  I don't really want to, for a couple of reasons:

1.  I have to return to the same chemo ward for Herceptin injections every 3 weeks for the next 18 months - so when I'm seen, others assume I'm back for more chemo...

2.  How many people really get chemo ONLY once when they have been diagnosed with stage IV cancer?  I would love to think I'm done, and don't get me wrong, I'm far from giving up my battle...but I've read a whole lot on this site, and I think I would be being naive to think that I'll be the lucky one that only has to go through chemo once.

I'm on to radiation next (immediately), herceptin for 18 months, and tamoxifen for 5 years...with scans and tests every 6 months...if everything is clear after radiation.

So tell me, how many of you have had chemo only once (even if it was longer than a 4 month treatment period)?  And those of you who have survived for years, how many times did you redo chemo?

Any help would be great.  My chemo is at 10am tomorrow (takes 5 hours).  I have internet access, so by 3pm Eastern time, I'll have to make my decision.  Don't rush, I think I've already decided against ringing the bell, I'm more interested in the answers to part 2.

Cheers,

Joanne

Just taking it one day at a time. Dx 5/5/2011, IDC, 4cm, Stage IV, Grade 3, 0/15 nodes, ER+/PR-, HER2+
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Oct 20, 2011 04:00AM CoolBreeze wrote:

1.  Who cares what others think?

2.  You are stage IV, you will be back for more.  If you don't want to ring the bell, you don't have to.  It's there to be fun for patients, it's not something that shoudl cause you grief.  They aren't going to force you.  Tell them when you are clear for five years you'll come back and ring it.

Where are your mets?

I thought all of us were on chemo pretty much continually.   

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV Dx 8/17/2009, IDC, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Oct 20, 2011 04:04AM susan_02143 wrote:

I have read about these silly bells. I think it is horrid. How do the people who will never stop their chemo feel? How arrogant is it to declare that this is your last? Almost superstitious of me I think, but that is how it feels to me.

If you don't want to ring a bell. Don't. If you do. Knock the h*ll out of it!

As to No 2, I have had chemo when I was Stage II... I fully expect that there will come a time when I will try any chemo that is available and might work. And then there will come a time that I will stop. Not much of an answer, huh?

*susan* 

anotherplan.blogspot.com... and its back. May 3, 2010 mets found. Five years NED on Faslodex * 4/2015 progression to bone * 6/11/2015 Femara/Ibrance * 12/27/2015 Xeloda * 2/24/2016 Xgeva * another progression, another drug Taxol 2/14/2017 Dx 6/8/2005, IDC, 3cm, Stage IIB, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Oct 20, 2011 04:05AM Joanne_L wrote:

I'm pretty new here - so I'm not really sure what mets are.  If you mean where did my cancer metastize to...yes?  Nearby bone and muscle tissue.  But lymphnodes were clear - so we're hoping radiation will do it.  As long as nothing shows up elsewhere in the meantime.  This is the caveat they keep giving me.

Seriously, chemo is pretty much ongoing?  That is not at all what my chemical oncologist had led me to believe.  Although she did make a comment once about keeping my port for the next time I need chemo...but she didn't elaborate at all.

You are right, I don't have to ring the bell until I feel I'm done.  I think it's good that I expect more chemo - at least it won't be a complete shock when/if it happens.

Just taking it one day at a time. Dx 5/5/2011, IDC, 4cm, Stage IV, Grade 3, 0/15 nodes, ER+/PR-, HER2+
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Oct 20, 2011 04:07AM EnglishMajor wrote:

I can't help with the chemo question

I say nuts to the bell!

Bring one of those air horns like fans bring to hockey games!

Make them hear  you!

Dx 7/6/2009, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Oct 20, 2011 04:09AM - edited Oct 20, 2011 04:21AM by Iwillwinthisbattle

Ring that bell!!!!! Celebrate! Even if it is only a small victory, what is the downside????



Enough with awareness, it's time for a cure!
Stage IV IDC 4/2011. (2 small mets to back, 2 small mets to liver) ER/PR+, HER-, BRCA-. 6 doses of A/C-done-8//2011. 2/20/12---NED!!!! What an amazing gift!!! Fighting hard to win this battle!!! Enough with awareness, it's time for a cure!!!!
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Oct 20, 2011 04:11AM Anne45 wrote:

Joanne I say see how you feel tomorrow.  If you feel like ringing the bell then please ring the bell.  If not its okay too.  Hugs

Dx 7/29/2009, IDC, Stage IV, mets, ER+/PR+, HER2-
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Oct 20, 2011 04:13AM susan_02143 wrote:

Oh my Joanne,

Our comments must have seemed harsh, and I can assure you that they are not intended that way. As a patient with mets, you can expect to be on some kind of treatment without too many breaks. That doesn't always means chemo however. Given that you are HER2+, you will probably be on a weekly herceptin. And the ER+ attributes mean that you could take one of the AI's, Tamoxifen and/or Faslodex [a monthly injection.]

It is up to you to decide how much information you want from your oncologist. There is no right way to do this.

Big hugs.... *susan* 

anotherplan.blogspot.com... and its back. May 3, 2010 mets found. Five years NED on Faslodex * 4/2015 progression to bone * 6/11/2015 Femara/Ibrance * 12/27/2015 Xeloda * 2/24/2016 Xgeva * another progression, another drug Taxol 2/14/2017 Dx 6/8/2005, IDC, 3cm, Stage IIB, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Oct 20, 2011 04:23AM Joanne_L wrote:

No, not harsh...but very much appreciated.

I'm pretty new to all of this.  I never even had a mammogram before - my very first, and diagnosed with stage IV after surgey of course.  It's all new to me...but if you need any accounting advise - US GAAP, CDN GAAP, IFRS - I know it all..  I just have so much to learn about cancer...like so many others, I felt as long as I donated to cancer funds, that's all I needed to know.  I begged for the surgey as quickly as possible, without understanding.  On hindsight, I would have begged for a double mastectomy - because now they are giving me such a difficult time trying to get it done.  Why risk it?  I want the other one gone too before they kill my arm removing all those lymph nodes.  My left arm is done...and I didn't know to expect that!

I prefer frank and to the point, than beating around the bush.  I would rather know what I'm facing.

But I also worry about Canada being a little behind on the latest medicine - so hearing from people in other countries give me a good sense of what I should be asking for.

Just taking it one day at a time. Dx 5/5/2011, IDC, 4cm, Stage IV, Grade 3, 0/15 nodes, ER+/PR-, HER2+
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Oct 20, 2011 04:38AM steelrose wrote:

Hi Joanne...

I rang a bell after finishing radiation. Ugh. And guess what? I got a diploma too! Yep. I was one DISGUSTED graduate. Oh and I was in a wheelchair at the time. You can just imagine.Yell

I suspect most of us will have chemo more than once during our Stage IV careers. There are so many things that we have to do with this stupid disease... ringing the bell ain't one of 'em. Exercise your right!

xoxo

Rose. 

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Oct 20, 2011 05:15AM nancyh wrote:

My knee jerk reaction was, no don't ring the bell because with stage 4 we all know we'll eventually be back, but then again, finishing up a course of chemo is reason to celebrate, so why not ring the bell?  Sure, you'll be back at some point and you'll be in for your herceptin, but in theory, as a ER+PR+, you could be on hormonal therapies for years before you have to darken the doorstep of the treatment center for chemo.  Plus, with oral chemos like Xeloda, it really could be a nice long stretch before you'll need IV chemo.  

We need to celebrate the little victories! 

Stage 4 in 2009, mets to liver, lungs, bones, and brain. Dx 8/12/2002, IDC, 1cm, Stage IIB, 3/12 nodes, ER+/PR+, HER2- Chemotherapy 10/1/2002 AC Chemotherapy 1/1/2003 Taxol (paclitaxel) Hormonal Therapy 5/1/2003 Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2- Chemotherapy 6/1/2007 CMF Dx 9/1/2009, IDC, Stage IV, metastasized to brain/bone/liver/lungs, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2009 Avastin (bevacizumab) Chemotherapy 9/1/2009 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 6/1/2010 Femara (letrozole) Chemotherapy 9/1/2011 Xeloda (capecitabine) Hormonal Therapy 1/1/2012 Faslodex (fulvestrant) Chemotherapy 6/1/2012 Navelbine (vinorelbine) Chemotherapy 5/1/2013 Gemzar (gemcitabine) Hormonal Therapy 6/1/2013 Aromasin (exemestane) Targeted Therapy 8/1/2013 Afinitor (everolimus) Chemotherapy 10/28/2013 Halaven (eribulin) Chemotherapy 11/12/2014 Taxotere (docetaxel) Chemotherapy 10/1/2015 Adriamycin (doxorubicin) Targeted Therapy Ibrance (palbociclib)
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Oct 20, 2011 05:16AM LivingIt wrote:

Im pretty sure it in the Bell ByLaws that "Any person or persons with a verified Stage Four diagnosis can ring the BELL  each and every time they finish a particular treatment. Treatment includes, but is not limited to zometa, xgeva, and infused chemo agent, any oral chemo agent, hormonal shots, pills and infusions and even flinstone vitamins if taken regularly for no less than three months." Chapter 458, Article 72, Paragraph 5 inclusive. 

Ring it Girl!  You made it through this one!!!! Do it! Do it!!!!! 

Zoh - Don't Postpone Joy!!!! 11/07 AC +Taxotere, then Tamoxifen x2yrs. Aromasin x 6 months, Taxotere x 1.5 yrs, Abraxane 2months, Tamoxifen 1 month, Xeloda Diva x 1 month crazy progression - Gemzar/Faslodex/Xgeva Dx 11/11/2007, IDC, 5cm, Stage IV, 2/8 nodes, ER+/PR+, HER2-
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Oct 20, 2011 05:20AM cookiegal wrote:

It's funny...there is a jewish superstition about not wanting to attract the evil eye. It's the reason we don't have baby showers before the baby. I can kind of understand why you feel like ringing the bell is not the right thing to do.

You deserve a cookie!
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Oct 20, 2011 12:16PM susan_02143 wrote:

Joanne,

Just sending some warm thoughts your way on this, your last day of scheduled chemo. May you have warm blankets, a quiet neighbor, and as much water as you can drink. Take care,

*susan* 

anotherplan.blogspot.com... and its back. May 3, 2010 mets found. Five years NED on Faslodex * 4/2015 progression to bone * 6/11/2015 Femara/Ibrance * 12/27/2015 Xeloda * 2/24/2016 Xgeva * another progression, another drug Taxol 2/14/2017 Dx 6/8/2005, IDC, 3cm, Stage IIB, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Oct 20, 2011 12:29PM Fitztwins wrote:

I have had HUGE  breaks between chemos.

1st, 4 years

2nd 18 months

3rd  18 months and counting... (still on herceptin/tykerb)

I don't count herceptin as chemo. As least not the hard stuff!

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Oct 20, 2011 12:43PM Joanne_L wrote:

Thanks everyone.  Heading to chemo now...  Not planning on ringing the bell.  I'll do that when it is a real celebration - when I don't have to return to the chemo ward for more than a few months.  That's when I'll feel like celebrating.  But right now, I finish chemo today (suffer immensely for 2 weeks) and start right up on radiation.  Plus I have to return to work too - no more money coming in after last week.  It's not much to celebrate yet!  I'm optimistic, but not feeling like I've reached a "real" milestone yet.  Post radiation maybe...

Just taking it one day at a time. Dx 5/5/2011, IDC, 4cm, Stage IV, Grade 3, 0/15 nodes, ER+/PR-, HER2+
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Oct 20, 2011 12:57PM meima-Bev wrote:

I had chemo and radiation my first time around with cancer 19 years ago, after which I was "CURED"!!  I didn't ring the bell then (Premonition?) and I wouldn't ring it now.      Meima

Dx 8/31/2006, Stage IV, mets, ER+/PR+, HER2-
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Oct 20, 2011 01:02PM Heidihill wrote:

Every round we win is worth ringing the bell for. My opinion. I'd ring the bell after every chemo. Congrats on making it to this round!!

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 20, 2011 01:09PM sueopp wrote:

I'm with Heidihill - big congrats on finishing this step.  One step at a time, and onward and upward.  Best to you - Sue

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Oct 20, 2011 01:47PM Lynn1 wrote:

If it were me, heck ya I'd ring that bell and ring it LOUD!!  While it is likely you will have additional chemo at some point in the future, what's the harm in celebrating the end of this one?!  I am always looking for reasons to celebrate!  Small victories keep me going!  As for what others think you're back there for (chemo or Herceptin), who cares what they think?!  Just my opinion.....

Congrats on finishing this step, and good luck with the radiation!

~Lynn ER+, HER2- Bone mets: sternum, pelvis, spine, ribs....it's everywhere. Started Afinitor/Femara 10/15/12
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Oct 20, 2011 04:19PM china wrote:

You can also request the song "Ring my bell,ring my bell..." to go with the clinic's bell thus making lots of noise for a celebratory celebration of finishing one successful treatment. Good luck with your radiation and Herceptin tmts. Hugs DawnFoot in mouth
Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Oct 20, 2011 04:24PM dreamwriter wrote:

I too was squeemish  aboout  the bell.  Think of it as  one of us getting ourr wings (LOL)..

Laugh until it really IS funny. Dx 12/20/2005, 6cm+, Stage IV, Grade 3, 18/18 nodes, mets, ER+/PR+, HER2-
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Oct 20, 2011 04:53PM 4everhopeful wrote:

Joanne,  ringing that bell doesn't necessarily mean than your treatment is done for good, it means that you have made it through this part of your journey.  We too have a bell at the Mississauga Cancer Centre where I go.  I did ring the bell when I did my very first round of chemo back in 2006 and boy did I ring that bell!!!!  I too had to go back for a bone treatment every 4 weeks.  I was in remission for 5 years.  January of this year, unfortunately I had to do chemo again, and after 6 months of it, I did not ring the bell and I felt my treatment was not over, as sure enough, it wasn't. Still doing chemo and if and when I'm done with this round, I will ring that bell loud and clear.  It's your own personal preference if you want to ring that bell or not, but I say GO FOR IT!  It's one hurdle over and done with!  Good Luck!  xoxo  Helen

My Exsistance is My HOPE! Dx 9/30/2005, IDC, 5cm, Stage IV, 18/22 nodes, mets, HER2+
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Oct 20, 2011 05:23PM Romans8 wrote:

Just enjoy the end of your chemo treatment. Live life one day at a time. If your oncologist puts you on hormonals, you may have years without chemo just like what fitzwins said.

Dx 11/9/2010, DCIS, 2cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2-
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Oct 20, 2011 06:10PM apple wrote:

there were no bells at my chemo center.. they did give me a printed award on 8 X 11 paper.

peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Oct 20, 2011 06:15PM china wrote:

No bells at my clinic either but I get frequent hugs from the onc nurses and staff.  Dawn

Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Oct 20, 2011 07:30PM Frapp wrote:

I say celebrate the end of that round of chemo.  Not only ring that bell but wave it high in the air and jump up and down while doing it.  Celebrate making it through, you deserve it.

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2- Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2- Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2- Surgery 11/2/2012 Mastectomy: Left, Right Targeted Therapy 12/20/2012 Afinitor (everolimus)
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Oct 21, 2011 01:35AM jeanne46 wrote:

Let us know what you decided to do.  My infusion center used to have an album with pictures of the chemo graduates!  Those were were the early stagers who were done with treatment. They never asked to take my pictureFrown.  I'm glad they got rid of the album.
Dx 12/05, Stage IV, Grade 3 ER-/PR-Her2- YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY OPTION YOU HAVE. -anonymous
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Oct 21, 2011 02:01AM steelrose wrote:

Joanne...

Although I was a grumpy bell ringer, I want to wish you a big CONGRATULATIONS! Whether you rang the bell or not, I hope you will do something special for yourself as a reward!

Sending love and best wishes...

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Oct 21, 2011 02:07AM JeninMichigan wrote:

I would be ringing the bell.   It is like the end of the round for you.  Maybe there are more rounds to go but everyone you finish is a battle hard fought and certainly worthy of a little celebration.   I know it is different because we will always be doing some kind of treatment.  But finishing a round of chemo is a big deal.   Of course, some of us just are not bell ringers... right?  You can celebrate being done in your own way.  

I have been really really lucky.  I did 6 cycles of chemo in 2008.   I have been NED since that time and just getting Herceptin every three weeks and Aredia every 18 weeks.   I feel like some day I know I will be back on chemo but I am riding a nice long wave of Herceptin and appreciating every bit of it.

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Oct 21, 2011 09:06PM Joanne_L wrote:

Well, I did not ring the bell.

During the 4 hours of my chemo, I gave it substantial thought.  It really didn't matter a big deal to me if I rang it or now.  Like usual - I've always ALWAYS had an issue with putting myself first.  I was more concerned about everyone one.  I felt a little selfish for those starting out and perhaps feeling they are so far from being able to ring the bell.  I remember feeling that way in the beginning too.  I also felt that they might get discouraged if they see me ring the bell, and see me back in weeks or months to come when I return for my Herceptin (not chemo) injections on the exact same beds in the exact same wards (pods).  They might get discouraged and think my cancer is back so soon - and infer that maybe theirs will return also.

In the end, it really didn't matter to me.  I felt so great yesterday, ringing or not ringing the bell was so secondary.  I went out and had wings, nachos and 3 cans of de-alcoholized beer.  I was high on life - it felt so amazing to finish this part.  In my mind, through all of this, I just kept focusing on getting through the treatment...not getting sick so that it would be delayed or changed or stopped.  Having this one part, without missing a scheduled round, no changes to the plan, all on schedule - and having it done...was like reaching a summit.  It is a truly amazing feeling.

Now Sunday is when my pain hits - and I feel like every bone in my body is broken.  So, I'm really enjoying my celebratory mood during the calm before the storm.  But I also know that throughout the two weeks of extreme pain (and I'm forbidden pain killers due to my failing liver), I can make it and I won't have to do it again...at least not for a very long time.  I feel like I am a winner...and I know I can fight all my battles and win my small victories along the way - one at a time.

The whole bell thing seems so silly now.  Whatever pleasure it brings to people - good.  If it doesn't - then don't ring it.  For me personally, I didn't need to do it, I know the feeling I have today would not have changed anyway.  And I don't have to wonder about how others felt when I rang it...because I'm quite certain that part of me that always puts everyone else first, is not going to change overnight!

Thanks for all your input...  I'll be disappearing for a couple of weeks while I weather my storm.  But I'll be back...and ready to start radiation as soon as this storm has passed. And I'll be reading all of your posts again.

Joanne - thanks everyone - this was a great post...I really feel a part of the forum now!

Just taking it one day at a time. Dx 5/5/2011, IDC, 4cm, Stage IV, Grade 3, 0/15 nodes, ER+/PR-, HER2+

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