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Topic: Need Your Tips for Members Newly Diagnosed Stage IV

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 5, 2016 02:22PM

Moderators wrote:

Looking for your tips to share with members who have been newly diagnosed stage IV/metastatic. Being diagnosed with Stage IV/Metastatic disease involves a unique set of concerns. If you could give your newly-diagnosed-with-mets self advice/tips/encouragement, what would you say? Please post in the thread below.

We're hoping to share these tips in our next Community Email Newsletter, with a highlight on National Metastatic Breast Cancer Awareness Day, Oct 13, so any and all tips/advice you could share in the next week would be very much appreciated!

Thank you in advance to this very special and valued group!

--The Mods

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Posts 91 - 120 (122 total)

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Oct 17, 2018 05:55AM Utopria wrote:

hello SAP1070 - I was also diagnosed stage IV on Oct 5th..it is hard, the stats are scary..I have a single bone met on my spine and going for initial radiation consult next week.

I have some good and bad days..I see some women doing good here with bone Mets and also see some sad stories..this is the reality and I have to learn to accept it. I have 20 and 17 yr old boys, the 20 yr old returning from college for fall break this weekend and have to break it to him. Not looking forward to that...

I’m also trying to figure out my next steps..i work full time..I’m wondering if I should cut back a bit and travel more when I still can? I love to travel. I also need the insurance from my job. My doc asked me not to make any impulsive decisions for a few weeks after a stage 4 diagnosis, and for now I’m heeding his advice.

Sorry that you are in a similar state as I am..but we can do this..maybe we are lucky and can hang on for the next miracle drug thus causing our lives to extend....

Love and hugs to you..





Future Breast Cancer Survivor! Dx 11/20/2014, IDC, Left, 3cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 12/8/2014 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/17/2015 AC Radiation Therapy 7/14/2015 Breast, Lymph nodes, Chest wall Hormonal Therapy 8/20/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/16/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Dx 12/4/2016, IDC, Left, <1cm, Grade 2 Surgery 12/28/2016 Mastectomy: Left Dx 10/5/2018, IDC, Stage IV, metastasized to bone Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Oct 29, 2018 09:17PM 6464 wrote:

thank you so much your post has given me hope . I started treatment today for stage IV with liver mets

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Oct 29, 2018 09:19PM Moderators wrote:

Welcome, 6464. We're sorry for the circumstances that have brought you here, but we're glad you've found our community, and hope you find it to be a source of support as you continue with your treatment.

The Mods

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Nov 4, 2018 01:01AM justgivethanks wrote:

I can only say I am eternally grateful for all the reasearch and information you have provided. This is my 3rd time.I have been HR+..HR-..Now TNBC...MBC..these are just letters and #..the best info has been yours...I contacted the NIH on my own and did all there testing and Immunotherapy will work for me..We need to be proactive..not passive..the doctors run tests..the radiologist reads the scan the way they want to and things are overlooked and candy coated....POSITIVE THINKING BRINGS ME THE ADVANTAGES THAT I DESIRE...6years and 9 months later..God Bless you and yours..

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Nov 4, 2018 01:07AM - edited Nov 4, 2018 05:04AM by Moderators

This Post was deleted by Moderators.
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Dec 3, 2018 04:29PM MishaA wrote:

Your suggestions are very well organized and useful, thank you!!!

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Jan 26, 2019 08:09PM Ailurophile wrote:

is there anyone here with Mets in liver who can share positive stories ? I am 42, first diagnosed in 2013 with stage 2A no lymph involved. currently have Mets in liver and infraclavicular area .while I am going to get 2nd and maybe 3rd opinion, I won't stop my treatments with my old medical team.plan is to do a hysterectomy then start fermara and Verzenio.(tumor is 95 percent hormone receptor) Anyone here similar to my situation? Btw beside fermara and verzenio I will be participating in a research with one more oral medication added to that regimen (don't know the name and have no idea yet that If it is a placebo base research or not) .would you please share your experience with verzenio? I heard about sever diarrhea and the bone pain and stiffness. I do not mind any of that if it gives me the chance to be by my 10 years old and see her graduating from high school😉

Dx 7/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/16/2013 Mastectomy: Left, Right Dx 1/2019, Stage IV, metastasized to liver/other, Grade 2, ER+, HER2- Surgery 2/4/2019 Prophylactic ovary removal
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Jan 27, 2019 09:00PM ladinred26 wrote:

thanks you leapfrog. I’ve just been diagnosed and am waiting for my biopsy results to get pathology. Ur words comfort my soul during this whirlwind of tests and then waiting.

mindi Dx 5/31/2017, ILC, Right, 6cm+, Stage IIIC, ER+/PR+, HER2- Chemotherapy 7/12/2017 AC + T (Taxol) Dx 1/2019, ILC, Both breasts, Stage IV, metastasized to bone/liver Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Tissue expander placement
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Jan 29, 2019 02:01AM Greenteatwo wrote:

Ailuraphile, I was diagnosed with mets to the liver 11/17. There is a thread on this site that specifically talks about liver mets. The plan that you described sounds like a good standard recommendation. A second and third opinion is a good plan too! Seeing your baby graduate is in your favor given the determined spirit you have and your actions to find the best course of treatment for your case.


I'm thriving and living with a very good quality of life alongside the treatment plan. Of course I'd prefer not to have to travel this journey! I have a oncology team that I trust and respects my input into the treatment plan. Choose a team that meets both your expectations and your needs.


Belynda

Dx 7/11/2016, IDC, Right, 1cm, Stage IV, metastasized to bone/liver, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 21, 2019 08:46PM princessfluffybritches wrote:

SAP1970, I'm glad you posted about online statistics about length of life being poor.  Gosh if I believed them, I would have to run outside right now and dig the hole.  I think family members look at me sometime and wonder why I'm not suffering!  That's how a lot of people see me or us.  

I am also upset by those statistics.  I try real hard to keep thinking of myself as an individual .  It's hard.

Surgery 7/13/2018 Targeted Therapy 7/14/2018 Ibrance (palbociclib) Hormonal Therapy 7/14/2018 Femara (letrozole) Dx 7/21/2018, ILC, Left, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2-
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Feb 25, 2019 03:24PM Bestbird wrote:

When contending with an initial diagnosis, treatment change, or side effect, it can be very challenging to obtain current science-based information.When I was diagnosed with MBC in 2011, I began researching the disease and its treatments and shared my notes with other patients.In 2015 I organized everything into a .pdf entitled "The Insider's Guide to Metastatic Breast Cancer" in which the tips below (and more) are listed.

The Guide is offered in paperback and eBook format on Amazon here or you can request a complimentary .pdf version by emailing me at bestbird@hotmail.com

Helpful Tips:

  • Keep copies of all your medical records and test results for ease of reference.These include blood tests, pathology reports, clinic summaries, scans and radiology reports, etc.The reports may contain key information that your doctor might not have noticed or mentioned.Furthermore, retaining your own copies will make it easier if you eventually transfer to a different medical network.
  • Whenever possible, select a trusted friend and/or family member to serve as your advocate, and ask them to accompany you to doctors' visits and treatment sessions.Your advocate can take notes and help you later recall important points that were discussed.
  • Seek a second – or even a third – professional opinion before starting any new treatment.A second or third opinion may potentially provide a critical difference in direction and outcome.
  • Because it doesn't show up as a solid tumor and looks more like a spider web, Lobular metastatic breast cancer may difficult to diagnose and track.It also tends to migrate to the abdominal area, so if you are diagnosed with Lobular MBC, be especially proactive in reporting abdominal pain and/or swelling to your doctor.
  • If you receive injections of any kind (including but not limited to Faslodex or Xgeva) request that the vaccine be warmed first and then injected slowly.This will help minimize pain immediately following the injection.
  • MBC patients who live in the US should be aware that they may qualify for Social Security Disability Insurance (SSDI) if they have spent sufficient time in the workforce and paid sufficient Social Security taxes.For those who are accepted, there is normally a 5-month waiting period before the first check is issued.Two years after acceptance, patients will be able to go on Medicare. Additional information about SSDI may be found at: http://www.ssa.gov/disability/
  • Remember that many people with MBC can live with the disease for years…possibly longer than statistics might lead one to believe.By the time they are published, survival statistics may be outdated due to the introduction of newer and more effective drugs.How long a particular MBC patient lives seems to be mostly dependent on how well their cancer responds to various treatments.Some people also believe that lifestyle may also play a helpful role in survival.Many patients who were initially given only months to live by their doctors are still alive years later, and for reasons that are being investigated, a very small proportion of patients may proceed to live a normal life span.
Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Feb 25, 2019 11:45PM Chemokaze wrote:

thank you BestBird! I just ordered the amazon option

10/2018: NEAD; 7/2018: Onward to Verzenio, Zometa, Faslodex, & CyberKnife to single met to L4 spine. Dx 9/1996, IDC, Left, Stage IB, Grade 3, 0/21 nodes, ER+/PR+ Dx 5/2016, IDC, Right, Stage IIIC, Grade 2, 14/21 nodes, ER+/PR+, HER2- Dx 6/2018, Stage IV, metastasized to bone
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Mar 4, 2019 04:41PM giz wrote:

Hello- the diagnosis/pathology report for previous breast cancer survivor 88 yr old woman with strong family history is- Grade 2 pT3 pNx pM1- what stage does that make her?

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Mar 4, 2019 05:22PM pajim wrote:

Hello giz, someone gave you the TNM classification for the tumor. You can read about it at

https://www.cancer.net/cancer-types/breast-cancer/...

Basically T3 means the tumor is bigger than 5 centimeters

Nx means they didn't look at the nodes. N= nodes. If they'd given a number it would be how many nodes were positive for cancer

M1 means there is evidence for metastasis. Which is why they didn't look at the nodes.

So this would make her a Stage IV patient.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Chemotherapy 1/1/2019 Halaven (eribulin) Chemotherapy 12/29/2019 CMF
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Mar 6, 2019 11:37AM AMP47 wrote:

good Mornjng Lynn - I have an oncologist. Would that be what you referr to as NCI doctor

Dx 1/16/2009, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 2/14/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Mar 11, 2019 08:56PM Gardentool wrote:

WendyB51, I also chose quality of life. I don't want to be sick and miserable with what little time I have left.

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Mar 11, 2019 08:59PM Gardentool wrote:

Here are my tips for those just diagnosed:


1. Live your life to the best of your ability

2. Refer to Number 1

Rinse and repeat

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Mar 18, 2019 08:04PM Llimko wrote:

I was informed that Stage 4 breast cancer automatically makes you eligible for LTD and social security disability

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May 7, 2019 11:36PM - edited May 7, 2019 11:38PM by pokyspider

This Post was deleted by pokyspider.
Dx 11/19/2018, IDC, Right, 2cm, Stage IIIC, Grade 2, 10/14 nodes, ER+/PR+, HER2- (FISH) Surgery 1/23/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 3/19/2019 CEF Chemotherapy 6/25/2019 Taxotere (docetaxel) Hormonal Therapy 9/17/2019 Radiation Therapy 9/18/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 9/18/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 25, 2019 11:20PM - edited Oct 25, 2019 11:22PM by vbishop

I am not sure I am the best one to offer advice, as I am new to the MBC game. Some I am learning as I go, some I have learned from my breast cancer friends that have been through various treatments ahead of me. I am also checking out topics here, as well as the mbcn.org site specific to Metastatic Breast Cancer.

One piece of advice I can share, that I used during my initial diagnosis and am doing so again now; I created a blog. I like to talk things out. I am an open book and have no qualms sharing the good, the bad, and the ugly about what I'm going through, resources I've found, my rants, my inspirations, antidotes about my journey to date. It's therapeutic for me. Plus it keeps cancer from being my main topic of conversation every day; that gets old to friends, family, and co-workers. My family, friends, and co-workers can stay up to date on what's going on. I've found friends and co-workers are more comfortable interacting with me. I have also found family, friends and co-workers are more comfortable asking questions after reading the blog. I try to be real, informative, inspirational, and add some levity to a very serious disease.

In case you're interested: https://vjbishop.blogspot.com

My dog Sam, is also entered in a Halloween contest at his day care. He is my Breast Cancer Awareness dog. Shameful plug, but he is so cute and I thought it was fitting considering the month and my recent diagnosis. Here is his entry:

A 90 lb. chocolate lab in a tutu, my "Fighter" shirt, my bc socks and a not-so-comfortable beanie I bought for the occasion. You can vote for him in the link in my blog if you are so inclined.

Fight on ladies! Stay strong, live everyday to the fullest, and think positive!

vjbishop.blogspot.com Dx 9/8/2013, LCIS, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 9/8/2013, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 9/8/2013, LCIS/ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 9/28/2013 Lymph node removal: Left, Sentinel Dx 10/8/2013, ILC, <1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Dx 10/8/2013, ILC, <1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Dx 10/8/2013, LCIS, <1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 10/8/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/1/2013 Arimidex (anastrozole) Surgery 12/23/2013 Reconstruction (left); Reconstruction (right) Dx 9/2019, ILC, Stage IV, metastasized to liver/other, Grade 2, 0/3 nodes Dx 9/2019, ILC, Left, Stage IV, metastasized to liver/other, Grade 2, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 7/7/2020 Other Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy AC + T (Taxol)
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Oct 26, 2019 10:16AM Moderators wrote:

What a terrific pup!! We voted for Sam!

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Oct 26, 2019 09:40PM vbishop wrote:

Thank you!

vjbishop.blogspot.com Dx 9/8/2013, LCIS, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 9/8/2013, ILC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 9/8/2013, LCIS/ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 9/28/2013 Lymph node removal: Left, Sentinel Dx 10/8/2013, ILC, <1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Dx 10/8/2013, ILC, <1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Dx 10/8/2013, LCIS, <1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 10/8/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/1/2013 Arimidex (anastrozole) Surgery 12/23/2013 Reconstruction (left); Reconstruction (right) Dx 9/2019, ILC, Stage IV, metastasized to liver/other, Grade 2, 0/3 nodes Dx 9/2019, ILC, Left, Stage IV, metastasized to liver/other, Grade 2, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 7/7/2020 Other Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy AC + T (Taxol)
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Nov 26, 2019 09:42AM ani32 wrote:

I learned so much since my diagnosis. Family and friends are so important! Find a few people that you can share with. MBC is not a death sentence I am going on 4 yrs.

amc
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Nov 28, 2019 09:41AM Jclc83 wrote:

I knew this day was coming. I am now stage IV with Mets to my lungs and supraclavicular nodes according to the CT scans I had done yesterday. Tomorrow I am having a core biopsy done on the node. I work in the medical field so it's just waiting on an official pathology report. I have so many things are running through my head such as should I tell my employer? When should I tell my kids? Should I keep the house ( I live alone). I've continued to work because I can't live on Social Security. But maybe it's time to retire? And for some unknown reason I applied to have Medicarestart in January.

Jan Dx 8/20/2015, DCIS/IDC, Right, 1cm, Stage IIIB, Grade 2, 7/7 nodes, ER+/PR+, HER2- Surgery 9/20/2015 Lumpectomy: Right; Lymph node removal: Right Chemotherapy 10/7/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 11/2019, DCIS/IDC, 2cm, Stage IV, metastasized to lungs/other, Grade 2, ER+/PR+, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Lymph nodes Hormonal Therapy Arimidex (anastrozole), Femara (letrozole)
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Nov 28, 2019 12:31PM Rosie24 wrote:

Jclc, Sorry about your new diagnosis. MBC is not what any of us wanted to hear but you will settle into a routine once you start your treatment. I suggest not making any big changes right away, especially with your house or job. See how you feel in a month, then start thinking about what feels right for you. For me I didn’t feel much different with my first treatment but I did seem to have a lot of appointments for the first few months. (I was retired so that was ok.). After that I had onc or nurse practitioner appts every other month, which made me almost forget I had cancer. Right now I’m getting ready for lumpectomy and node removal next week, followed by radiation. (My MO decided we should be more aggressive with treatment because my tumors had all shrunk a lot and a couple sites were ruled out as cancer.). So you won’t know how you feel right Away, that’s why I suggest holding off on big decisions. When you know your first treatment you can also look for that board here. Best wishes to you

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy: Left Surgery 12/3/2019 Lymph node removal: Sentinel Radiation Therapy Whole-breast
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Nov 29, 2019 12:53AM Jclc83 wrote:

thanks for your reply. Happy Thanksgiving.

Jan Dx 8/20/2015, DCIS/IDC, Right, 1cm, Stage IIIB, Grade 2, 7/7 nodes, ER+/PR+, HER2- Surgery 9/20/2015 Lumpectomy: Right; Lymph node removal: Right Chemotherapy 10/7/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 11/2019, DCIS/IDC, 2cm, Stage IV, metastasized to lungs/other, Grade 2, ER+/PR+, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Lymph nodes Hormonal Therapy Arimidex (anastrozole), Femara (letrozole)
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Dec 8, 2019 02:20AM Daylightdancer666 wrote:

I got diagnosed breast cancer mets diagnosed since june and one tip.ot advice I can give is take ome day at a time and dont push yourself too much I still push myself too much e.g. I carry things and that strains my back where have boney mets and dont worry if you dont adjust and come terms with condition straight away I'm still dealing with it it now xx

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Feb 18, 2020 09:49AM KerryD wrote:

Just newly diagnosed with stage 4. Already been stage 2. I love everyone’s posts and need all the advise and views. Thanks for everything.

Dx 10/2008, IDC, Right, 1cm, Grade 1, 5/18 nodes, ER+/PR+, HER2- Dx 10/2008, IDC, Right, 1cm, Stage IIA, Grade 1, 5/18 nodes, ER+/PR+, HER2- Dx 1/2020, Stage IV, metastasized to bone Surgery Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Surgery Lumpectomy Chemotherapy AC + T (Taxotere) Radiation Therapy Hormonal Therapy
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Feb 18, 2020 09:50AM KerryD wrote:

This is good advise. My back hurts.

Dx 10/2008, IDC, Right, 1cm, Grade 1, 5/18 nodes, ER+/PR+, HER2- Dx 10/2008, IDC, Right, 1cm, Stage IIA, Grade 1, 5/18 nodes, ER+/PR+, HER2- Dx 1/2020, Stage IV, metastasized to bone Surgery Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Surgery Lumpectomy Chemotherapy AC + T (Taxotere) Radiation Therapy Hormonal Therapy
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Feb 18, 2020 04:40PM Lily55 wrote:

I think I have been under treated and feel dumped now.......it's very difficult to believe in yourself when doctors have written me off......

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)

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