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Old 03-23-2013, 05:45 PM   #21
ElaineM
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Wink Re: Not good news..

I know it is hard, but please try to stay positive and keep going.
Take good care of yourself. Treat yourself a little even if you don't feel like it.
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12 years and counting
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Lucky 13 !! I hope so !!!!!!
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Old 03-23-2013, 07:01 PM   #22
Jackie07
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Re: Not good news..

Sorry to hear the not so good news. Hope things will improve soon. Sending you good vibes.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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NICU 4.4 LB
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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
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Old 03-24-2013, 09:40 AM   #23
fullofbeans
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Re: Not good news..

Thanks lizabeth for the research there are a couple there I had not seen.

so yep after falling off ny unicorn searching my unicorn again:


:-)
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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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Old 03-24-2013, 10:02 AM   #24
'lizbeth
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Re: Not good news..

Beans,

Do any of those trials look promising to you?
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 03-24-2013, 06:18 PM   #25
fullofbeans
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Re: Not good news..

lizbeth thank you but no I am absolutly not qualifying for any

I thought I was PI3K mutated but I am not I am P53 mutated only and her2 I am PI3k negative PTEN negative and BRAF negative FGR negative and EGFR negative

I am therefore not qualifying for any and now that I have had herc lapatinib TDM1 and this last one it is 4 her2 targetted treatments it is over most her2 new product trials phase 1 which usually is max of 3 prior anti her2..

I feel like swearing a lot in between the tears
__________________

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; 03-24-2013 at 06:28 PM..
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Old 03-24-2013, 09:43 PM   #26
suzan w
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Re: Not good news..

Hey FOB..sounds like your beans are running a bit low! I don't have any new ideas for you to try, it seems like some of those trials seem worth looking into. I am sending positive energy to you across the great big ocean. By the time it gets to you it will be a tidal wave of hope and hugs! xo from Suzan and Bette
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 03-25-2013, 03:42 AM   #27
'lizbeth
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Re: Not good news..

FOB,

I absolutely have no expertise here. You unicorn is outside the Her2 box for sure.

I am curious with the P53 mutation - does Li–Fraumeni syndrome run in your family?

I read P53 affects arginine and proline. Are you having any issues with blood pressure? any issues with connective tissue or vitamin C deficiencies?

I also read that P53 is associated with angiogenisis. Have you tried Avastin yet?

I found this group in the UK doing work with P53. Are you familiar with them?


EMBO J. 2011 Nov 15;30(24):4921-30. doi: 10.1038/emboj.2011.419.
Regulation of p53 stability and function by the deubiquitinating enzyme USP42.

Hock AK, Vigneron AM, Carter S, Ludwig RL, Vousden KH.
Source

The Beatson Institute for Cancer Research, Glasgow, UK.


http://www.ncbi.nlm.nih.gov/pubmed/22085928/


I'd get out the juicer and load up on organic vegetables. Focus healing energy on your lungs.



Also in traditional chinese medicine the lung meridian goes from below the lateral clavicle by the axilla down the arm over the ante cubital crease to the radial edge of the thumb. Do you have any soreness or tenderness in these areas? The lungs are associated with the emotion of grief.



I found this posted on Livestrong: The cell cycle -- the sequence of steps your cells go through during cell division -- plays an important role in your health. Defects in the cell cycle can lead to diminished cell and tissue growth, while a loss of control over the cell cycle can cause diseases such as cancer. A gene and protein within your cells, p53 plays a key role in regulating cell division and can prevent diseases, including several forms of cancer. Several nutrients from your diet affect p53 function and activity, leading to a number of physiological effects in your cells.

p53 Function and Importance

p53 carries out a number of functions to control cell proliferation and growth and prevent tumor development and cancer. The protein controls the rate at which your cells can divide, allowing your cells to divide only when instructed by your body. In addition, p53 helps your cells react to genetic damage, repairing genetic mutations in cells before they proliferate, to prevent those mutations from being passed to the next generation of cells. Finally, p53 induces cell death in cells damaged beyond repair. By promoting cell death, p53 disposes of dysfunctional cells within your tissues, getting rid of the cell before it can cause a disease such as cancer.




Effect of Vitamin C

One nutrient that can affect p53 is vitamin C, or ascorbic acid. The ability to activate p53 in cancer cells proves important for cancer treatment. Many cancer cells inactivate p53, allowing the cell to evade death and go on to proliferate and form a tumor. The ability to activate p53 within these cells may halt cell proliferation, or even cause cancer cell death. Vitamin C is able to increase the levels of vitamin C within colon cancer cells, according to a study published by the Korean Society for Biochemistry and Molecular Biology in 2011. In addition, treating the cells with vitamin C was able to increase the efficacy of the chemotherapy drug cisplatin, inducing more cancer cell death than using the drug alone.
Effect of Vitamin D

Another nutrient with an effect on p53 is vitamin D. Similar to vitamin C, vitamin D may promote cancer death by activating p53. A study published in "Investigative Ophthalmology & Visual Science" in 2003 indicates that treating retinoblastoma cancer with vitamin D was able to increase the levels of p53, as well as other anti-cancer proteins within the cancer cells, leading to retinoblastoma cell death. Though these results have not been investigated for use in humans, vitamin D might prove beneficial for controlling some types of cancer by activating p53.
Effect of Selenium

An essential mineral with an effect on p53 is selenium. Selenium contributes to a number of proteins, and some of these selenium-containing proteins can interact with p53 in your cells. Specifically, the selenium-containing protein SeMet can activate p53 in response to genetic damage, helping the cell to repair its DNA, according to a study published in "Anticancer Research" in 2006. As a result, selenium may prevent cancer development. By allowing your cells to repair themselves, selenium fights the accumulation of genetic mutations required for cancer growth. The use of selenium to prevent some types of cancer is the subject of clinical trials, as of 2011, and the mineral might present a viable cancer treatment.



Read more: http://www.livestrong.com/article/41...#ixzz2OXvGeQ6I

While you are swearing, dig around the pantry and find some Vitamin C, Vitamin D and Selenium.

Avastin as a unicorn?

Sending cyber hugs [ ]
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease

Last edited by 'lizbeth; 03-25-2013 at 03:46 AM.. Reason: cleaning up formatting
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Old 03-25-2013, 04:54 AM   #28
Mandamoo
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Re: Not good news..

http://clinicaltrials.gov/show/NCT01664000
I too have p53 mutation and this seems a promising compound but seems only to be in US.
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 03-25-2013, 09:04 AM   #29
fullofbeans
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Re: Not good news..

Mamandoo thank you I saw it but indeed it is in the US.. I am limiting myself to europe for health reasons especially when it is a treatment that is to be carried on..

p53 mutation are present in about 70% of cancer. So thousands and thousands of 'groups' are studying it in the lab but translational research has been slow i.e clinical trials. China's gov has patented the first gene therapy treatment about 4/5 years ago but there are (including myself ) many sceptics, I would not trust the efficacy data they presented.

I have seen a few clinical trials i could join in the US unfortunatenately choices are much more limited here in the uk.
__________________

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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Old 03-25-2013, 04:11 PM   #30
Mandamoo
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Re: Not good news..

Yes - P53 in some respects seems a cancer "holy Grail". I got results of testing back yesterday confirming the p53 mutation but also showing GBR7, IDH2 and ERB3. From my reading the GBR7 is also an issue in triple negative and currently no targeted therapy or trials. I have decided that it is only now that this testing is becoming more mainstream and that we have no idea which elements are more important in driving our particular cancer's growth - therefore, Her2 treatments are still important and may have a beneficial impact and TK inhibitors too. It seems that no-one understands the interaction of all of these mechanisms. I am in Australia and trials are now limited too. I truly hope you will find something to try. I have read about the Chinese genetic treatment but skeptical also. The one I listed is now in human trial and is interesting. Merck, Roche and Sanofi are also nearing human trials but some are particular cancer not broader. Have you considered trying to access Perjeta through compassionate access? What about other tyrosine kinase inhibitors - Afatinib and neratinib if there are trials for those and avastin as an option too.

Lizbeth - thankyou for your references. I believe had my vitamin D levels been adequate when I would not have had metastasis - I believe it is truly underrated.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 03-27-2013, 10:40 AM   #31
fullofbeans
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Re: Not good news..

Mandamoo I am also convinced that it is my lack of vit D that led to cancer, convinced. But once it is there it is a different story..
__________________

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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Old 04-01-2013, 04:21 PM   #32
KDR
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Re: Not good news..

Amanda,
On the triple negative, have you heard of the copper depletion trials?
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 05-08-2013, 11:17 AM   #33
NEDenise
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Re: Not good news..

Hey FOB!

Thinking of you, and wondering if you feel up to giving your dear friends an update. How's your breathing? What new plan of action did you decide on?

How's your puppy?

Miss you! Sending love and light to you across the miles!
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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Old 05-08-2013, 11:21 AM   #34
Pray
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Re: Not good news..

Thinking of you also!
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-08-2013, 04:06 PM   #35
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: Not good news..

Thinking about you, too, Beans! Hoping things are looking up for you there across the pond, Amanda.
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Smile On!
Laurel


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 05-08-2013, 07:13 PM   #36
Cannon
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Re: Not good news..

Thinking of you FOB. You are a mighty warrior. Even mighty warriors get down once in a while. Best,
Rebecca
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 05-08-2013, 08:29 PM   #37
KsGal
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Posts: 585
Re: Not good news..

Hey just checking in on you and wondering how you are doing? Im hoping you and your doctors have found something that looks promising. Big cyberhugs and prayers headed your way.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 05-14-2013, 06:56 AM   #38
Pray
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Location: Michigan
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Re: Not good news..

Praying your doing well and anxiously waiting for a check in. Gods blessings to you
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-14-2013, 07:15 AM   #39
ammebarb
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Re: Not good news..

I'm thinking of you too, Beans. Praying for a plan that helps. Gentle hugs.

Barb A.
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Old 05-24-2013, 07:08 AM   #40
Ellie F
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Posts: 1,526
Re: Not good news..

Bumping this up.

Hi FOB
Wondered how things were going and if you had sorted a new plan? Still have bed for you here if you find any trial in my neck of the woods.

Ellie
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