 |
|
03-22-2013, 08:10 PM
|
#1
|
|
Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
|
Not good news..
I asked to move the scan foward in the trial because my breathing & caughing is getting worse and lacking of energy..a lot.
anyhow wednesday i was told that there is a 17% increase and basically I am still in the trial because recist is saying 20% is progression.. but looking for another one before my health deteriorate further and i cannot enter any criteria.
But not good so here i am looking for clinical trial again and wondering what is it all for. I dont think i'll never be able to go on a trip again and the weather is awful here and in the minus (celsuis) so not even enjoying my walk with the dog.. I so know I am not the only one but I so not deserved that life.. i went at a diner with friends tonight and everyone was beaming with health, talking about their babies and future plans and their problems seemed wonderful to me. We played a game and unknown to them I was finding it so energy demanding that it was hard to enjoy it.
Anyhow I am holding on to the January feeling I had where when after a few weeks after starting the trial I felt so much more energy so quickly and could enjoy a great new year eve..
on the road again..
__________________
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
|
|
|
|
03-22-2013, 08:18 PM
|
#2
|
|
Senior Member
Join Date: Jan 2012
Posts: 362
|
Re: Not good news..
I read your post and was so saddened by it. Please stay strong and try to be positive. You're in my prayers.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
|
|
|
|
|
03-22-2013, 08:23 PM
|
#3
|
|
Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
|
Re: Not good news..
Oh FOB, I was just reminding myself of your journey in your signature and at the very end you have the words of the Dalai Lama which are important to all of us....
I hope you can find another trial suitable for you, but also that you see some improvements on this current one.
You can always speak your peace here at this safe place..... We get it.....
Marie x
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
|
|
|
|
|
03-22-2013, 09:43 PM
|
#4
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Re: Not good news..
Wishing you peace, serenity and much luck in your quest for the next solution, FOB.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
|
|
|
|
|
03-22-2013, 10:26 PM
|
#5
|
|
Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
|
Re: Not good news..
Oh FOB I so wish this trial had worked longer for you. The weather is terrible over there but I did a 10 day look ahead and it is going to brighten up soon so so will your spirits I hope! Not long and you can enjoy walking your dog again.
I sincerely hope you find another trial soon.
Chin Up
Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
|
|
|
|
|
03-23-2013, 12:17 AM
|
#6
|
|
Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
|
Re: Not good news..
I'm so sorry to hear this news. Praying for better days soon.
- Penny
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
|
|
|
|
|
03-23-2013, 03:45 AM
|
#7
|
|
Senior Member
Join Date: Jul 2011
Posts: 954
|
Re: Not good news..
I'm sorry about this news, FullofBeans. ((Hugs))
Are you and your dear dog heading anywhere in particular on this trip or just exploring wherever?
Wishing you the best and just prayed for ya,
Paula
|
|
|
|
|
03-23-2013, 04:04 AM
|
#8
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Re: Not good news..
FOB,
Reading your post I can hear your exhaustion and feel your disappointment.
Isn't is so true, that once you have been dx. with bc and you hear the usually everyday issues of others, you know they don't realize that they do not have serious problems.
It isn't easy to hear the silly complaints when fighting so hard. For myself, often times during the week I will have to endure the worthless complaints that really are not important at all (compared to the reality) of a women fighting her way to NED.
I am deeply sorry to hear that you are at 17% but remain strong as you are not out of the trail. It is wise of you to seek alternatives and as you already know when pushing open doors, light will come through.
I realize it is a difficult time for you, but please know many of your sisters are here and supporting you.
Now, as far as that stinky weather, being a dog lover like you, if you can't walk your little darling, then just hold her/or / him and snuggle. The sun will shine on both of you.
Many hugs being sent.
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
|
|
|
|
|
03-23-2013, 05:39 AM
|
#9
|
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Re: Not good news..
Hi Fob
I am really upset to hear your news. The weather is terrible and we're snowed in here. I sincerely hope you find another trial here in England. As I have said before if one should be available in my part of the country you would be very welcome to stay with me ( hopefully snow will be gone by then)!
Ellie
|
|
|
|
|
03-23-2013, 06:42 AM
|
#10
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: Not good news..
Hello,
sorry to hear all this and the awful weather and insensitive friends leading their normal lives doesn't help. Do inhalers help your breathing??? Radiation created fibrosis in one lung and inhalers helped me a lot. Your dog looks adorable.
I'm in the south of France, near Cannes and all it's doing here is raining, in fact we wonder if there will ever be another sunny day.
Watch some good movies and get some second opinions and hopefully someone on the site will have some good suggestions.
You'll get back into the fight - it's a big drag and exhausting and upsetting to have set backs but you are courageous and strong.
big hugs and love
sarah
__________________
|
|
|
|
|
03-23-2013, 07:59 AM
|
#11
|
|
Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
|
Re: Not good news..
Oh, FOB...
I can read the weariness in every word. It's all so unfair. Cancer sucks doesn't even scratch the surface.
Please try to feel all the prayers and love we're sending...I know in a very real way, we fight the physical/medical fight on our own...but I know for me anyway, the support here helps me so much, mentally and emotionally. I hope we can help you that way too.
And, I'm sorry your friends aren't a little more sensitive to what you're dealing with. Until someone has walked this lousy road...they just can't understand how relentless this struggle is. It's not their fault...but that doesn't make it any easier for us.
Hoping and praying for...
nicer, cheerier weather ahead...
NO MORE PROGRESSION!!...
a relief from some of your symptoms...
peace...less weariness...and...
lots of puppy kisses!
I'll be thinking of you LOTS in the days ahead
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
|
|
|
|
|
03-23-2013, 08:51 AM
|
#12
|
|
Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
|
Re: Not good news..
FOB,
I was trying to check prior posts to see what you have and haven't tried. Can you make us a list of treatments that you have progressed on. (+6*Taxotere; 3*TACE; LITT). I see you did six treatments of Taxotere. What did you receive with the 3 TACE; LITT? Something seemed to really slow it down after the FEC, Taxotere, TACE, LITT & vaccine combinations.
I looked at your signature, I don't see Perjeta.
Also have you tested for the BRCA 1 & 2, or BART genetics? We might need to think outside the Her2 box.
I'm happy to scour the internet for new ideas. I have some energy that I'd be happy to share with you. I see you are in the UK. Alright, a bit more challenging for me since I am in the American health system. Still . . . I'm going to look for ideas.
__________________
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; 03-23-2013 at 09:01 AM..
Reason: addition typo
|
|
|
|
|
03-23-2013, 10:17 AM
|
#13
|
|
Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
|
Re: Not good news..
Thank you all for the replies. By the way I do not think that my friends are insensitive they are just living a normal life, we are not at a diner party to feel sorry about me, no thanks I would not want it any other way it's just that I am the one who fell of the wagon. I used to know of people that did fell of the wagon and now it's me.. but life continues..
Anyhow I am looking at trials and who knows I may be the one for whom the drug works really well next time.. or a phase one that turns out to help us all wouldn't that be nice for a change, wouldn't that be nice..
It's been snowing here.. spring hey!?
__________________
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
|
|
|
|
|
03-23-2013, 10:26 AM
|
#14
|
|
Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
|
Re: Not good news..
FOB, we are likely looking at the same trials. Have you considered or rejected any of these:
- Safety and Efficacy of BKM120 in Combination With Trastuzumab in Patients With Relapsing HER2 Overexpressing Breast Cancer Who Have Previously Failed Trastuzumab
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01132664
· A Phase 2 Study Evaluating Ganetespib in Women With Metastatic HER2+ or Triple Negative Breast Cancer
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01677455
- Investigating Safety, Tolerability and Efficacy of AZD5363 When Combined With Paclitaxel in Breast Cancer Patients
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01625286
· Safety, Tolerability & Potential Anti-cancer Activity of Increasing Doses of AZD5363 in Different Treatment Schedules
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01226316
__________________
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
|
|
|
|
|
03-23-2013, 10:53 AM
|
#15
|
|
Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
|
Re: Not good news..
or these?
A Study of a Combination of Trastuzumab and Capecitabine With or Without Pertuzumab in Patients With HER2-positive Metastatic Breast Cancer (PHEREXA)
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01026142
A Study of Paclitaxel With GDC-0941 Versus Paclitaxel With Placebo in Patients With Locally Recurrent or Metastatic Breast Cancer
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01026142
Study to Assess Safety, Pharmacokinetics, and Efficacy of Oral CC-223 for Patients With Advanced Solid Tumors, Non-Hodgkin Lymphoma or Multiple Myeloma
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01177397
Phase Ib, Dose Escalation Study of Oral LDE225 in Combination With BKM120 in Patients With Advanced Solid Tumors
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01576666
__________________
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
|
|
|
|
|
03-23-2013, 11:00 AM
|
#16
|
|
Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
|
Re: Not good news..
FOB,
I think a good combo for you would be T-DM1 with Perjeta.
Stay strong,
Karen
|
|
|
|
|
03-23-2013, 11:03 AM
|
#17
|
|
Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
|
Re: Not good news..
And a few more:
Could those board members who are a bit more research savy take a look and help narrow FOB's search to the most promising for her situation (lung mets)
An Open-Label, Multicenter, Phase 1/2 Study of Poly(ADP-Ribose) Polymerase (PARP) Inhibitor E7449 as Single Agent in Subjects With Advanced Solid Tumors or With B-cell Malignancies and in Combination With Temozolomide (TMZ) or With Carboplatin and Paclitaxel in Subjects With Advanced Solid Tumors
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01618136
A Study of BYL719 in Adult Patients With Advanced Solid Malignancies, Whose Tumors Have an Alteration of the PIK3CA Gene
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01219699
Dose Finding Study of RAD001 (Everolimus, Afinitor®) in Combination With BEZ235 in Patients With Advanced Solid Tumors
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01482156
Study of BMN 673, a PARP Inhibitor, in Patients With Advanced or Recurrent Solid Tumors
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01286987
__________________
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
|
|
|
|
|
03-23-2013, 12:48 PM
|
#18
|
|
Senior Member
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
|
Re: Not good news..
FOB,
I hope these links work. They are all information on beta blockers and the effect on the adrenaline receptors. Could you not try something along these lines? What about a booster of the vaccine you had?
If the doctor says that the beta blocker could affect your blood pressure by making it lower (which I’ll bet it already is from all the stress to your adrenal glands) maybe you could offset that by sprinkling salt on your food and monitoring your blood pressure. That is what I was told to do 3 ½ years ago and I firmly believe it has helped me.The internist who put me on them said it would help with the effects of the chemo and Herceptin. I had some side effects when I started the pills but after about a month my body finally started to relax. This was when I was going through treatment the first time and only started the bb halfway through my 8 rounds of chemo . You could also try a 24 hour blood pressure monitor to see what your pressures are doing.
One of my doctors is certain I had adrenal exhaustion before I was diagnosed with cancer and that the thinking is that it (the adrenal exhaustion caused by cortisol levels and effect on other hormones) could be leading to chronic diseases and cancer. She told me to stay on the beta blockers because they are giving my body the break it needs.
I am still having some issues with one of my tumor markers rising and some bloodwork issues but I think the effect of the blockers has slowed things and do they not cross the blood brain barrier?(maybe someone here can confirm this?)
About 4 months after I started them, in early 2010, I think is was News who posted this link-
http://www.medicalnewstoday.com/releases/183717.php
And since then more and more research is coming out:
http://www.cancerresearchuk.org/canc...news/CR_093620
http://www.ncbi.nlm.nih.gov/pubmed/21632503
http://sciencelife.uchospitals.edu/2...gainst-cancer/
http://www.scientistlive.com/Europea...astasis/24313/
As always, check with your doctor to make sure it is right for you. Blood pressure is a fine balancing act and depends on what you take and what you do and careful monitoring and I don’t know if you’re already on something for your heart. Most of all it would really be beneficial if you could see an endocrinologist about a possible adrenal problem or a caring general practitioner who helps you with this issue, because some (actually a lot) of doctors will not recognize it.
Best Wishes and a huge hug!
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
|
|
|
|
|
03-23-2013, 03:03 PM
|
#19
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Not good news..
FOB, we all feel down and depressed when tired and sad, there are better days so keep fighting which is why you've come this far and accept the bad days as just that...tomorrow will be better. x
__________________
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!
|
|
|
|
|
03-23-2013, 04:19 PM
|
#20
|
|
Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
|
Re: Not good news..
Hi FOB,
I would be exhausted and depressed if I had all that happening to me too. Life goes on for others, and we cannot expect them to be sensitive to how we feel, but still, it would be nice if one of them would say: I know, it sucks. And give you a hug.
May one of the trials or treatments suggested be your magic bullet and give you lots of mileage and good QOL. You are not nearly at the point where you should be thinking about giving up. It can just be sooo hard to keep getting up after stumbling.
Imagine all our arms around you, keeping you up until that magic bullet is found. Imagine all of us hugging you when you are struggling.
And Spring will come soon. We had the coldest 23d of March since 1916, so it can only get better from here on.
Love
Jacqueline, the Netherlands
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 07:12 AM.
|
Linear Mode
