HER2 Support Group Forums - View Single Post - Her2+ vaccines - has anyone who is stage IV had a cure?

I am posting this, because I am looking at doing a vaccine trial. My Her2+ expression is extremely high, (7.7 on the FISH test) and despite numerous chemo's my body continues its struggle with her2 over expression. I have finally come to the end of the road with Herceptin. It served me well, for over 5 years and I am sad to say goodbye. It causes severe shortness of breath for me, and I believe is the cause of scarring in my lungs, lung fibrosis (although I believe TDM-1 helped speed that up), severe headaches, and fatigue that makes it difficult to function. I have to drink a lot of fluids and battle with the feeling of an oncoming UTI, if I do not. Couple all of that with rising markers now 30.7 - it is clearly time to explore new options. So I am reaching out to anyone who is stage IV and has had a decent remission after vaccine therapy. I do believe that the future for treating her2+ cancers lies in using the immune system (immunotherapy).

Thanks for taking the time to respond.

__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.

Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.

05-11-2014, 09:26 PM	#1
waterdreamer Senior Member Join Date: Jan 2010 Location: Thousand Oaks, California. Posts: 199	Her2+ vaccines - has anyone who is stage IV had a cure? I am posting this, because I am looking at doing a vaccine trial. My Her2+ expression is extremely high, (7.7 on the FISH test) and despite numerous chemo's my body continues its struggle with her2 over expression. I have finally come to the end of the road with Herceptin. It served me well, for over 5 years and I am sad to say goodbye. It causes severe shortness of breath for me, and I believe is the cause of scarring in my lungs, lung fibrosis (although I believe TDM-1 helped speed that up), severe headaches, and fatigue that makes it difficult to function. I have to drink a lot of fluids and battle with the feeling of an oncoming UTI, if I do not. Couple all of that with rising markers now 30.7 - it is clearly time to explore new options. So I am reaching out to anyone who is stage IV and has had a decent remission after vaccine therapy. I do believe that the future for treating her2+ cancers lies in using the immune system (immunotherapy). Thanks for taking the time to respond. __________________ Breastfeeding when diagnosed with Her2+ May 2008 Oct 2008 Double mastectomy 22/28 lymph nodes positive Decline chemotherapy (decision I regret) Nov 2009 Mets to lungs and bones. Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable. May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1 Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation. Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis. Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1. Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal). Started Navelbine weekly. Did one round with Herceptin. Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well. December 2013 scans show no sign of active cancer. March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake May 2014 - stop Herceptin. Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs. Sept 2014, Xeloda, Tykerb and Herceptin. Nov 2014 - Decide to take a break from all treatment. May 2015 - Brain met radiated with Novalis July 2015 - Have progression in right lung. Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment. Nov 2015 - Thoracentesis 1500ml removed from right lung. Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum. Feb 2016 - Thoracentesis 2200ml drained from right lung Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda. March 2016 - Thoracentesis 1650ml drained from right lung. April 2016 – Thoracentesis 1500 ml drained from right lung. June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis. June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles. July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks. Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen My doctor wants to put me on hospice. Dec 23rd 2016 - I am granted compassionate use of Neratanib. May 31st 2017 - still on Neratinib, feeling good.