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Old 08-13-2006, 07:52 PM   #1
Jade
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Question Clavicle/collarbone pain

Hi all!
I finished a year of Herceptin (after mastectomy and 4 rounds of EC, Stage I no nodes) on Wednesday and had minor bone pain throughout treatment, increasing towards the end. The pain was usually in the lower half of my body, however, for the last few weeks I've had increasing pain in the clavicle area. I saw my onc last Tuesday and advised him of this, he said to expect all kinds of funny feelings after going off Herceptin and that he'd see me in 7 weeks. I'm leaving Friday for a month holiday overseas, and am concerned about this pain which seems to be increasing. I'm hoping it just might be that I lifted something heavy or possibly from my portacath which is on my right side, but the pain is on both sides and I am now constantly aware of it (it's not awful pain, 2 out of 10 right now) but it's there and I've never ever had anything like this. Of course you know what I'm thinking. Can't find any lumps. Has anyone else experienced this and if so what was the problem? Thanks for any input you may have.

Jade

Last edited by Jade; 08-14-2006 at 12:25 AM..
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Old 08-14-2006, 05:02 AM   #2
Cathya
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Jade;

I had a tumor in my clavicular node and it was not painful in any way. Other than the lump which my onc found I never would have known it was there. So, perhaps having pain is a good thing. One thing that did happen to me recently is a tremendous pain down my middle chest....I thought I was having a heart attack. I went through numerous tests.....for heart, blood clot etc. and in the end it turned out to be chostocondritis which is an inflammation of the cartalige where it joins the breastbone. Who has ever heard of this? I took advil for it and put on a little heat. So....we have sometimes these little things that scare the heck out of us. Still......be seen about it before your trip so you can relax.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-14-2006, 05:33 AM   #3
julierene
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I had bone mets in my clavical and I never felt it. Well maybe I felt it a little when I was on the Carbo/Taxol/Herceptin - but only when it was killing everything. Herceptin has caused me a lot of bone pain, so I never know what to think about it being the Herceptin or the mets. Sorry if that's not very useful...

Being Stage 1, maybe it's just nothing like your Onc says. Can you give us more info about your dx?
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Old 08-14-2006, 08:29 AM   #4
Jade
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Smile

Thanks Cathy and Julie for your responses. I was dx in Nov. 04 with Stage I Grade 3 Her2+++ ER/PR-, so I'm almost 2 years out. This @!$^% disease is turning me into a hypochondriac, don't you just hate the fear and anxiety that pervades our lives now? What makes me nervous is that the left (mast) side is definitely more symptomatic, and of course not knowing what to expect. I'll make sure I have good insurance while I'm away just in case. Both of you are further down the road than me and I have to say I am amazed and humbled by your courage, having read all your posts. Hopefully it's just the Herceptin and when I get the all-clear I'll stop being such a wimp. I've finished treatment now, all that's left is the scans which will be scheduled next time I see the onc in 7 weeks.

Chostocondritis! Who indeed has ever heard of that?!! What a huge relief it must have been to get that dx! We know more about our anatomies than we ever thought we would or wanted to know!

I wish you and all the other brave women here to be NED forever. You have suffered so much and still manage to reach out and help others. Thank you so much.

Jade
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Old 08-14-2006, 01:00 PM   #5
Sheila
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Jade
My advice is if it bothers you for more than a week, get it checked.... I was a little over 1 1/2 years out when I was diagnosed with mets to the clavicle area....I also was stage 1 ER PR - and Her2 +++, all nodes neg...I went from stage one to stage IV in the blink of an eye...I am still maintaining on Herceptin and Xeloda occasionally after 3 years since the mets were found....the earlier found and treated, the better.....not to worry you, but not knowing is sometimes a bigger stress....it is probably nothing, but get it checked if it doesn't resolve.
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Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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