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08-18-2015, 04:49 AM
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#21
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Senior Member
Join Date: Apr 2014
Posts: 206
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Re: Brain Met
Hi,
Never say never. Tykerb may not be generally available, but there may be ways to get it for your partner.
Sometimes people take out a mortgage or loan and fund the cost of these things themselves. In NZ quite a few women somehow managed to find the $50,000 it cost to make up a year of herceptin when the govt would only provide the first 9 weeks of it. That may or may not be an option.
Others have friends and relatives who chip in. I met a woman who was a single mum with no money and a seven year old son, and she had needed $17,000 worth of some cancer drug for her brain tumor and her friends all pooled together and came up with the money. (it may even have been Tykerb)
Or even communities, encouraged by their local radio stations who can choose to get people phoning in to help out, or the local cancer society may support her cause, or something.
And sometimes it is possible to get these drugs supplied on a compassionate basis by the manufacturers, there is a special name for this process, and a special way of organising it but some people manage to do it. I am sure some of the wonderful people on this webpage will know how and whether or not it could be possible for you to access in UK.
I know it is really hard and you are probably both exhausted just getting through each day at present, and maybe these options won't work for you. I hope you don't feel upset at me suggesting them.
I wish you all the best.
Jessica
__________________
 1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan 14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.
March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.
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08-20-2015, 05:18 AM
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#22
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Senior Member
Join Date: Mar 2014
Posts: 55
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Re: Brain Met
Jessica,
Thanks for the ideas. Surgery is next Friday. Hopefully everything will be removed, and then go from there.
Thanks again for your help.
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08-24-2015, 09:25 AM
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#23
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Senior Member
Join Date: Jan 2014
Location: Las Vegas
Posts: 26
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Re: Brain Met
Hi
Best of luck with your gf's surgery.
I am starting my 3rd and last wk of WBRT. I have 10 tumors in my brain so surgery and cyber were not options for me.
I will starting Tykerb and Afinitor after I complete radiation.
I had been on kadcyla for close to 3 yrs and NED almost the whole time. But it does not cross the blood brain barrier. 
I will keep you updated on how my new chemo cocktail is working.
Also get in touch with the pharma comps that make the drugs she needs. They can do compassionate use or discounted price. patientassistancenow.com and covermymeds.com. Those sites will do benefit investigations and look for companies or people who will sponsor you and pay for your meds
Keri
__________________
 [/SIGPIC]37 years old
12/10 her 2+, ER+ invasive ductile carc stage 3C
1/11 taxol herc 12 wks
4/11 FEC herc 12 wks
8/11 masectomy 48 lymph nodes removed
9/11 tamoxifen
10/11 radiation thru Dec
11/12 recon!
12/12. It's back. :( mets to liver and lungs
Stopped tamoxifen
1/13 TDM1 expansion trial
4/13 lung mets gone 65% reduction in liver markers in low teens!
12/13 lungs still clear! Liver mets reduction
12/13 opherectomy
1/14. Tumor markers increasing. 30's now
2/14 TMs back in high teens
4/14 increased calcium levels
5/14 Xgeva to kadcyla. Scan showed tiny scar tissue on sternum, not previously ever seen
8/14 NED
12/14 NED!!
4/15. NED. YAY! Dr thinking about stopping kadcyla
7/15 still NED. LAST KADCYLA SCHEDULED FOR 9/3
8/15 left side of tongue and lips went numb, brain MRI revealed 10 lesions all over the brain. :(
8/15. Tumor markers still in high teens ???
8/15. 15 rounds of Whole Brain Radiation
Started an Alzheimer's medicine, Namenda, to help preserve brain cognition.
9/15 started Afinator and Tykerb
10/15. Brain MRI. 7 rumors left, nothing new, nothing growing
12/15. 3 sessions of cyber knife
3/16 MRI stable. Nothing new nothing growing nothing shrinking
5/16. MRI. 4 existing tumors doubled in size and 2 new tumor
Looking into clinical trials
6/16. 6 2 hr sessions of cyber knife
10/16 stable MRI
11/16 back in the body.......lungs liver lymph nodes sternum
11/16 abraxane herceptin xgeva
12/16 lungs clear but now 2 tumor in liver
2/17 Opdivo ibrance Tykerb xgeva
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08-25-2015, 05:34 AM
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#24
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Senior Member
Join Date: Mar 2014
Posts: 55
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Re: Brain Met
Thank You, Good luck with your treatment.
We are in the UK, so I can't use the links you provided unfortunately.
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08-28-2015, 03:38 PM
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#25
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Senior Member
Join Date: Mar 2014
Posts: 55
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Re: Brain Met
Just got back from the hospital. Surgery was a success all of the lesion was removed.
I know there is a long road ahead, but so so happy right now!
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08-28-2015, 05:45 PM
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#26
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Brain Met
WONDERFUL. YAAAAAY!!!
I am so happy for you!
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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08-28-2015, 06:49 PM
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#27
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Senior Member
Join Date: Apr 2014
Posts: 206
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Re: Brain Met
Excellent. That must be such a relief. Rest well, recover well.
When you are in a place to do so, you may want to check to see if maybe those US sites would know of English equivalents that could help you get compassionate access to the Tykerb drug she needs next to help mop up the area effectively.
Does anyone on this page know who could help?
best wishes
Jessica
best wishes
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan 14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.
March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.
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