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Old 05-13-2011, 04:38 PM   #1
Carmichael Cathy
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Questions about possible MET symptoms

I am still fairly new to this group, had a double masectomy with reconstruction 4/1/2010 for Stage IIa BC, triple positive, 6 rounds of TCH, 25 rounds of radiation, am on Herceptin until Monday (last infusion!), and am on Femara. I had a PET scan last April and it was clear. I have a few questions that have been nagging at me.

1) My left arm hurts a lot, comes and goes but hurts enough to take Advil 3-4 times a week and sometimes that doesn't touch it. Had 11 lymph nodes out on that side, none on the other side as there was no cancer found in that breast. Was wondering how the pain from a masectomy might be different than bone mets, and when or if I should be concerned.

2) My joints hurt a lot, came on about 2 months ago at a point where I had been on Herceptin for about 10 months and Femara for at least 6 months. I would imagine that these symptoms are side effects from these drugs, but once again was wondering if I should be concerned.

I guess in general I was wondering when I should get concerned as I don't want to call my Oncologist every time I have an ache or pain. Thank you!

Cathy
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Old 05-13-2011, 04:55 PM   #2
Laurel
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Re: Questions about possible MET symptoms

Cathy,

I am no expert, but my best guess is that the pain in your arm is related to the nodal removal. However, I wonder if you have discussed this with your onc? Left sided radiating arm pain can be a symptom of angina or infarction (blockage) in a coronary artery. You did not disclose your age, so just a thought.

The joint pain is likely from the Femara. It frequently catches up with us around the 6 month mark of usage. The best remedy for joint pain seems to be regular exercise which seems counter intuitive when the joints are aching. It does help, though, believe me.

I think taking supplements that work to decrease inflammation is helpful for the joint pain as well. Olive oil, Super EPA (fish oil), triple mushroom complex, and plum extract are a few that work to reduce inflammation in our bodies.

Hope this helps!
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 05-13-2011, 04:59 PM   #3
NanaJoni
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Re: Questions about possible MET symptoms

Cathy - you didn't say exactly where your pain was in that left arm but it could be many things, as you know. I wouldn't worry too much about calling the onc when you have aches and pains. My onc and his nurse practitioner both told me that they would be monitoring me carefully (every 4 months now) but that I NEED to be vigilant in recognizing when things are not "normal" (whatever that may be). Also, have you been checked for any problems with lymphadema. I go to an excellent physical therapist who is a breast cancer specialist and she makes careful measurements of my arms from shoulder to wrist - every 4" is marked then measured. I have no experience with Femara but Herceptin did cause me to feel achy and like I had the flu for the week to 10 days after treatment day. Your clean PET scan in April is really good news - so if you're not scheduled for a regular visit with your onc - call and ask. Stress can be very harmful - and you just don't need it.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 05-13-2011, 10:14 PM   #4
BonnieR
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Re: Questions about possible MET symptoms

Cathy, as I mentioned on your other thread, the joint pain may very well be from Femara. I developed painful "trigger thumb"and switched to Aromasin and things improved.
As Joni said, the arm might be a lymphedema issue. I only had 2 or 3 nodes removed and still developed a mild lymphedema that can be painful sometimes. And this is 4 years out. Is everything okay with your reconstruction?
It is normal to be concerned over symptoms once we have had cancer. Not knowing what is just "normal" ailments. Especially when you get to the stage where treatment is winding down. You get a "what now?" sort of unease.
Keep the faith.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 05-14-2011, 05:36 AM   #5
Sheila
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Re: Questions about possible MET symptoms

Cathy
I also had many nodes removed from my left side, and I had alot of "aching" in the arm...I did develop lymphedema a few years later, the compression sleeve takes care of the ache. As withanything, if it doesnt feel right, and persists, get it checked....a good oncologist expects you to be vigilent......if they find it is nothing, you can relax!
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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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Old 07-07-2011, 12:00 PM   #6
wlproctor
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Re: Questions about possible MET symptoms

It sounds like it could be lymphadema. I have stage one lymphadema which is mild, but I still get occasional arm pain all the way to my fingertips. you might want to at least be evaluated. mild lymphadema might not be noticeable to you.
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Diagnosed 3/13/2009 from FNA, 39 years old.
4/09 lumpectomy with SNB, did not obtain clear margins.
5/09 - BMX with full axillary dissection on right side.
Final pathology report: 4cm+ high grade DCIS tumor with micro-invasive idc, 2/32 lymph nodes, ER/PR-, Her2+++, Stage IIa

7/09 - started TCH, finished 10/09
11/09 - 9 more months of Herceptin, finished 7/10

Reconstruction scheduled for Jan 2011

Expander placement completed - January 2011
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Old 08-08-2011, 06:50 AM   #7
Westcoastgirl
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Re: Questions about possible MET symptoms

My left arm ached/aches or feels odd often but otherwise everything was/is normal. As a precaution....if I am using any kind of wts, house cleaning, gardening, the arm doesn't feel right, or am in the sun a lot I wear a compression sleeve. If I am worried about a bug bite or a cat scratch I treat them and put on the sleeve for many hours and the arm has been fine. I am very cautious and never want to develop lymphedema if I can help it.

The pain I have in joints and all over some days it seems, I do believe is from the Femera. A good friend just finished her five years of Femera and in six months her aches and pains were gone. It does seem a long haul doesn't it. They can give you something for pain. It is always offered to me by my onc but I decline. I think exercise and stretching are the key and one gets tired of drugs. I am also cautious about taking herbals because of being E+.

Lastly there is the two week rule. If a symptom persists beyond two weeks you should see your dr, even if it is just for peace of mind.

Take care, Carolyn
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12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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