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Old 05-14-2007, 01:28 PM   #1
Sandy H
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Another bump in the road!

Went to the E.R. for shortness of breath. X-ray did not show enough fluid to drain off but I do have cellulitis around the new port. Got some antibiotic so hopefully, that will clear up soon. The shortness of breath is part of the disease process and I will have to live with that so the E.R. doc told me. Very frustrating as I am not able to do much and yet I don't feel sick. Oh well, we knew that keeping the disease stable couldn't last for ever. hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 05-14-2007, 01:53 PM   #2
Barbara H.
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Hi Sandy,
I'm so sorry to hear this. I wonder if you could get a second opinion about this shortness of breath. Can you speak with a specialist. I just think about all the fun you were having in Florida this past winter. It doesn't seem right that you should have to deal with this issue when you seemed to be doing OK.
Thinking of you,
Barbara
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Old 05-14-2007, 02:09 PM   #3
Andi
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Sandy - I am sorry to hear of your cellulitis and breathing problems. I'm thinking, too, it might not be a bad idea to get another opinion of the breathing thing. I would talk to an oncologist rather than an ER Doc. It would seem to me there should be something available to help alleviate your discomfort. I hope you get to feeling better soon.
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-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 05-14-2007, 03:41 PM   #4
ellen
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Sandy, As I also have a pleural effusion and ibc and am on doxil, I am wondering if you have the ca 27.29 which would indicate somewhat how you are doing on the doxil. I had pleurodesis done, has anyone suggested this to you. You do not want to continue to drain the lung because it builds up scar tissue and makes the pleurodesis less successful.

It improves quality of life and I would think sob. I would definitely get another opinion. I will be getting another tm test my 3rd or 4th round of doxil. If I were to guess, I would tell you it wasn't working but my onc says be patient. I really don't think I have sob but I do cough.

I think you need another opinion. I have been on many chemos but this can be controlled. Good luck to you. Ellen
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Old 05-14-2007, 03:46 PM   #5
Mary Jo
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A simple hug and love from my heart I send.

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 05-14-2007, 04:03 PM   #6
StephN
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Unhappy

Dear Sandy -

Sorry about the shortness of breath - I had that myself each time I was on the hard chemos. Seemed to go with the lowered red count as not as much oxygen circulating.
Some deep breathing exercises helped a bit, especially as we tend to get more sedantary and it can be a viscious cycle.

Yours breathing difficulty is made more so by the fluid, but if they did not see much it may be from the fatigue and those effects of the doxil. What does it say for side effects in the paperwork on that drug??

Is there a good pulmonologist or cardiac specialist you could see?
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 05-14-2007, 04:43 PM   #7
Lolly
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I second Steph's suggestion to seek treatment for the shortness of breath if not caused by obvious fluid buildup...my husband was treated for pneumonia back January, and is STILL on an inhaler twice a day as per followup with his primary care, who stated after his physical this spring that other than the aftereffects to his lungs from this episode of pneumonia he's "healthy as a horse"! He has to keep using the inhaler until he can walk up a flight of stairs without being short of breath, and he hasn't been dealing with darned old cancer, so Sandy, it may be time for a visit to yet another specialist who may be able to treat the symptoms. I wouldn't take an ER doctor's word for this.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-14-2007, 10:13 PM   #8
lindaw
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Dear Sandy

i agree with Sandy.it may be worth asking your Oncologist to help with this symptom. If there is something to be done makes us feel better and more in control.

love
linda
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Old 05-15-2007, 06:49 AM   #9
Sandy H
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I will ask about another opinion tomorrow. The Doxil is such a slow working chemo that its hard to know if it is doing anything. Maybe, I should have tried something else-who knows. I have to wait another 3 weeks before I can change to another chemo. Time will tell. Thanks for all you replies and I wil keep you updated. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 05-15-2007, 09:58 AM   #10
StillHere
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Sandy, I know I don't post much myself, but I do read the postings and I feel there is a definite change in your spirit after your trip to the ER for SOB. I just wanted to let you know that I feel just terrible that you are feeling so weak. I pray that this is temporary. Please, Please get a second opinion. No offense to ER doc's, but I would venture a guess that oncology is not their major area of expertise. Peace Karen
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 05-15-2007, 01:05 PM   #11
Sandy H
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I do have an appointment to see the oncology PA tomorrow so she will get an ear full. The E.R. doc said they talked to my oncologist and that is what he was told. We will see what happens tomorrow. I am sure it will be lots different! hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 05-15-2007, 02:57 PM   #12
Jean
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Location: New Jersey
Posts: 3,154
Dear Sandy,

I know very little about about your cellulitis etc. I just wanted to let you
know that I am pulling real hard for you so please continue to be positive
as you are one of the major ladies on this site! Hopefully your onc will
be able to have a treatment to get your breathing back on track.

Sending you a MAJOR hug,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 05-15-2007, 03:44 PM   #13
Leslie's sister
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Prayers

Sandy:

I have followed your emails as well since joining this site and feel like I know you. You are truly an inspiration as well as a source of comfort for many women with your uplifting words and hugs for everyone. Keep up the fight. I will pray that the symptoms subside and you knock out this nasty disease.

hugs to you as well,

Lisa
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Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 05-15-2007, 06:11 PM   #14
anne2
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Dear Sandy,

I just wanted to say that you are in my thoughts and prayers. I have always known you to look at the positive in last 3yrs on this site. I hope you feel better soon.
Hugs,
Anne
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Old 05-16-2007, 12:46 PM   #15
Shell
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Posts: 301
Sandy-

Having experience with the same breathing symptoms you have, I would not be surprised to hear your onc confirm what you have been told. The sob is, at least for me, part of my disease progression (which for me is lymph nodes and lungs). I also have an ever-present non-productive cough. I always have Hall's cough drops with me. As my lung capacity gets compromised, my heart works harder which impacts the sob. I was told I will eventually need oxygen. Overall, I often feel ache-y, and I also take tylenol and oxycodine, which helps. I think the oxycodine also works as a suppressant on the cough.

I hope the tests will show the doxil is working for you. And in the meantime, I am hoping your onc will explain or correct things for you, and that you achieve a higher level of comfort. Please keep us posted...

Kind regards,
__________________
Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 05-16-2007, 02:01 PM   #16
MJo
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Have you seen a pulmonologist. Of maybe a pulmonary therapist. A guy in my support group is NED after being diagnosed with Stage IV Lung Cancer. He's going to a pulmonary therapist due to shortness of breath.
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MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 05-16-2007, 02:05 PM   #17
Vanessa
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Best wishes, Sandy. I will be thinking about you and I hope your oncologist gives you more answers.
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