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Old 06-13-2012, 02:52 PM   #1
emmastarr
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Join Date: Dec 2010
Location: England
Posts: 38
CT scan next week! :*(

Hi all,
I have been breathless lately (not everyday, it comes and goes) so was sent for a chest xray which my oncologist said was fine when I saw him 2 weeks ago. My iron level is 12.4. Any ideas what could be causing this breathlessness? Also, am suffering with fatigue- I am quite busy with my two boys but I only work 2 1/2 days per week and by the end of the day, I am struggling and consequently on weekends am napping quite frequently. I had a letter come through for a chest CT and liver CT contrast late last week. Any ideas why I might be getting a chest CT when the chest xray came back fine?
I am getting my nipple reconstruction tomorrow...am a bit nervous, if truth be told!
Thanks in advance for your knowledge,
Emma
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Diagnosed Feb 2010, age 32
IDC 0.5cm & 0.1mm and DCIS
Had mastectomy
Lymph nodes clear, no vascular invasion
Stage 1, grade 1, ER+, PR-, HER2+
Had 5x FEC, on tamoxifen and herceptin
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Old 06-13-2012, 07:58 PM   #2
Vicki revised
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Join Date: Mar 2012
Location: Alabama
Posts: 121
Re: CT scan next week! :*(

How is your platelet count? Whenever mine is low (I'm borderline now) I have shortness of breath and fatigue.
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Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 06-14-2012, 01:35 PM   #3
tricia keegan
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Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: CT scan next week! :*(

I imagine the CT will show more than the x ray but wanted to wish you luck and hope its nothing to worry about!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 06-15-2012, 06:09 PM   #4
KDR
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Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: CT scan next week! :*(

Stress! Anxiety!
Good luck on the scans, I have them Wednesday. It's got to be the most challenging part of this journey...
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-26-2012, 02:05 PM   #5
emmastarr
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Join Date: Dec 2010
Location: England
Posts: 38
Re: CT scan next week! :*(

Hi.
I finally got the CT scan results back today, and it has come back all clear. I am so relieved. The only thing that the scan picked up was an enlarged uterus, not sure what if anything they are going to do about this. Is an enlarged uterus a problem? Have no idea about these things! The tamoxifen has been causing me to have heavy bleeding for which I have been given tranexamic acid which has helped a lot. Have any of you girls had experience of the above and have you received any treatment? So, am not sure what is causing the breathlessness, maybe the tamoxifen?? My iron is apparently low, normal. Thanks
__________________
Diagnosed Feb 2010, age 32
IDC 0.5cm & 0.1mm and DCIS
Had mastectomy
Lymph nodes clear, no vascular invasion
Stage 1, grade 1, ER+, PR-, HER2+
Had 5x FEC, on tamoxifen and herceptin
emmastarr is offline   Reply With Quote
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