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04-07-2012, 03:06 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Me again..my face is still swollen..hard blood clot
..the blood clot was hard they could not dissolve it and did put a stent over..
WHAT I DID NOT KNOW IS THAT I WOULD KEEP THIS STUPID HAMSTER FACE. I somewhat expected that the medication would get rid of the clot but I have since read that all it does is to prevent a new one from forming..(no one told me at the hospital!!!!! and here I am alone reading this)
Is that true then I have to live like that now? Is there anything any one as heard or something that could be done so I can have the dignity of having a normal face in last part of my journey, I would like people to remember me with my face. Will it go over time why has no one addressed this with me..is the only way to keep taking huge amount of steroids to bring the swelling down to "some" normality..?
My treatment should still go ahead so as far as my blood are ok despite the heparin, I am also yet to be randomised.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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04-07-2012, 05:22 AM
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#2
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Me again..my face is still swollen..hard blood clot
FOB,
Wishing you a little peace...for a change. You are really being tested, but hang in there, things are changing at a good pace,
Karen
__________________
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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04-07-2012, 10:40 AM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Me again..my face is still swollen..hard blood clot
As you quote, "under no circumstances should you lose hope"
Sounds like it is past time someone spoke with you about this matter. How soon can you get an appointment? Meanwhile, dont assume too much until you have more information. I am not familiar with the problem you are having but wanted to drop in and say keep the faith.
__________________
Bonnie
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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04-07-2012, 11:43 AM
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#4
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Me again..my face is still swollen..hard blood clot
Hopefully this applies to your situation.
http://catalog.nucleusinc.com/displa...ph.php?MID=148
Quote:
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Anticoagulants (sometimes called blood thinners) decrease your blood's ability to clot. They are used to stop clots from getting bigger and to prevent a blood clot from forming. Anticoagulants do not break up blood clots that have already formed. Your body's natural system will dissolve the clot.
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04-07-2012, 05:49 PM
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#5
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Junior Member
Join Date: Apr 2012
Posts: 1
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Re: Me again..my face is still swollen..hard blood clot
hi
I am a frequent lurker on this site and do follow the threads. I cheer the successes and grieve the losses. I am a 6 yr survivor and did log on infrequently way back in 06 when I was going through my treatments. I have been meaning to re register and stop lurking, today my heart breaks reading your post and it has made me sign on.
I am a vascular access nurse in Canada, that means I have a speciality in vascular access devices and things to do with vascular access. You are describing SVC syndrome, superior vena cava syndrome. Basically your big vessels in your chest that drain your upper body including your head have narrowed or closed off due to a blood clot I believe in your situation. It is like the big highway is closed and the blood needs to find another route. These other routes are called collateral veins, they take time to develop. Blood thinners help to prevent anymore clots from forming. Don't have intravenous in the arm on the side where your port was. With time the swelling usually gets better.
All the best
Nancy85 ( my new user name, when diagnosed at 45 I said that I planned on living till 85!!!)
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04-07-2012, 06:20 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Me again..my face is still swollen..hard blood clot
Thank you for the support and Nancy for the explanations and Rich the research.
I have read that 40-80% of cancer patient who had major surgery go on developing blood clot. Preventative measure is usually sufficient to put a stop to that.
I had major surgery in December 2011 I cannot comprehend why preventative measure where not taken.
When I was NED: If I had had a PET scan in 2009 (when I told them I could feel something in my breast again) or if the CT scans of my checks had picked up the local recurrence (remember it never came back in the liver I did private extra treatment i.e. laser) and they had not missed it twice on the CT scans I would still be NED.
The radiologists realised it was there once I discovered supraclavicular nodes growing) and then compared to previous scans to see were this was coming which showed that it had been there for at last 10 months.. initially small 1cm in the mamary gland close to the breast scar.. This could have so been zapped
They refused to give me radiotherapy of the breast in 2007 (because they were so sure that it would be back in the liver)
When I came to see them with an increased node in supra clavicular nodes in 2010 I was sent home and told come back if it grows.
I have been busy fighting but I I think it is time to sue my hospital for having made me suffer so much having taken away every chances to fight against it and simply doing (far more expensive) crisis management.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
Last edited by fullofbeans; 04-07-2012 at 06:37 PM..
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04-07-2012, 10:49 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Me again..my face is still swollen..hard blood clot
Knowing you, and your own sense of justice in your treatment of others, it is all the harder to bear. Do you have someone close there where you are who is helping you with any of this?
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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04-08-2012, 09:08 AM
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#8
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Me again..my face is still swollen..hard blood clot
Hi FOB
I can hear your frustration and totally understand how hard this all is. The issue of preventive anticoagulent therapy seems very variable in the NHS. Some surgeons absolutely insist on a full 14 days post op treatment yet others do nothing and even on the same unit!
Hang on in there though as it sounds like your body will eventually drain the fluid away naturally from your face.Wonder if sleeping in a more upright position may stop pooling of fluid overnight?
When will you know the outcome of the randomisation??
Ellie
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04-09-2012, 05:02 AM
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#9
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Me again..my face is still swollen..hard blood clot
Ellie yes but also simply being given a serious nurse talk about it a leaflet and looking for symptoms, My eye had been puffy for wekks, I was wondering if because my puppy was sleeping in my bed, If I only new it was a symptoms, the clot could have been addressed then then i noticed my cheeck I was wondering if I was not putting on weight but the scale was the same.. I remember asking (too really nice) friends who did not think my cheek looked weird, and another humm maybe a little bit.. That was few weeks ago.. then the trial..
A talk ad a leaflet of the danger would have changed things for me I think.
Anyway no point looking at it now but really..
It should be this Wednesday
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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04-10-2012, 03:16 AM
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#10
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Me again..my face is still swollen..hard blood clot
FOB
Will be praying that Wednesday brings the news we hope for.There are so many options emerging that are less toxic and hopefully will get approval in Europe very soon.
Please let us know.
Ellie
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04-10-2012, 05:48 AM
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#11
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Me again..my face is still swollen..hard blood clot
FOB,
Hang in there. It sounds like you can count on having your lovely face back very soon!
I'll be praying, sending good vibes and crossing my fingers and toes for you on Wednesday! I so hope you get exactly what you need to get your life back where you want it.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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04-11-2012, 09:29 AM
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#12
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Me again..my face is still swollen..hard blood clot
I hope you get some relief and some help for this problem soon.
By all means don't give up.
Hugs
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04-11-2012, 01:00 PM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Me again..my face is still swollen..hard blood clot
fullofbeans,
Hope to hear from you soon.
Amelia
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04-11-2012, 04:47 PM
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#14
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Me again..my face is still swollen..hard blood clot
Amelia and all of you , things are good I first want to say that it is hard to be showing happiness here when I do not know the outcome is for Michka.. i do not know what to say to randomisation, I have this sadness for the women who will not receive it for the chance they wanted and are being denied, and maybe it will not help anyway but a chance..and perhaps one has to believe that the other option was actually the option that was right for them.. and i almost wanted to not say today, I actually found out yesterday.
But my news are good: My blood are good despite taking heparin and will receive first TDM1 tomorrow.
My face is still swollen and things are not improving if anything getting worse. But I talked to the radiologist that did install my piccl line today he is in the team of the one that put my stent (but done at the trial centre another hospital), he said the stent should have kept the vein more open (he could do the test there and then to see what was happening). the vein is still too narrow despite the stenting and not all the "liquid" is going through it and being pushed out via another. Another stent could perhaps being put over my open it more and get my face back they will talk. I will go straight from the trial to my hospital I did not want to delay treatment.
Today was a good day for me.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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04-11-2012, 05:50 PM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Me again..my face is still swollen..hard blood clot
Thanks for sharing the wonderful news!
Most of us on this Board have been through ups and downs. We always want to encourage each other and be considerate. But we also definitely like to hear good news.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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04-11-2012, 06:15 PM
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#16
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Me again..my face is still swollen..hard blood clot
FOB,
So sorry for your trials and tribulations. So frustrating!
I can totally understand your unhappiness about your face.
Hang in there!
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-14-2012, 09:29 AM
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#17
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Me again..my face is still swollen..hard blood clot
Thanks all. things are on the right track I am getting another intervention on Tuesday now to open the vena cava more and hopefully this should wave the face problem good bye, I am hoping.
I am having not much side effect from my first tdm1 and yes I am so relieved this is finally happening soooo relieved.
I am having a nice little break from having to sort things and the stress. I have planned week ends with my friends and contacted old Uni friends who are going to come visit. Some gardening and some healthy food, I have making a lot of raw food (plus fish), sprouting and beautiful salads, things are more peaceful and it is nice.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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