My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

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RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Broulee2340 on Wed May 23, 2018 08:08 AM

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Hi I hope you are still doing well I was diagnosed 7/5/18 with gej cancer 2cm Tumor and 2 local lymph node involvement in the subsequent pet scan they found a small 5mm spot on my liver. As with your case instantly in the basket get folfox 6months starting 29/5/18 then we will see. No radiation therapy until results of the folfox. I am no person to roll over and undertook massive research now while we have in this country very good oncologists and exceptional research on immunotherapy. We are so far behind with radiation therapy no proton therapy etc. in my case I worked exceptionally hard to build a successful building company and I have the financial capacity to pursue treatment elsewhere. My research has shown me my best chance is chemo / immunotherapy combined with proton beam therapy or if possible carbon ion therapy. The best places from all my research are the hospitals in Munich and Heidelberg Germany they will take a chance and try many things unlike Australia. I am waiting on admission to the hospital. But what do you think of my plans I don’t have anyone to bounce this off. Regards Steve Evans

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Wickedinns on Wed May 23, 2018 10:58 AM

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On May 23, 2018 8:08 AM Broulee2340 wrote:

Hi I hope you are still doing well I was diagnosed 7/5/18 with gej cancer 2cm Tumor and 2 local lymph node involvement in the subsequent pet scan they found a small 5mm spot on my liver. As with your case instantly in the basket get folfox 6months starting 29/5/18 then we will see. No radiation therapy until results of the folfox. I am no person to roll over and undertook massive research now while we have in this country very good oncologists and exceptional research on immunotherapy. We are so far behind with radiation therapy no proton therapy etc. in my case I worked exceptionally hard to build a successful building company and I have the financial capacity to pursue treatment elsewhere. My research has shown me my best chance is chemo / immunotherapy combined with proton beam therapy or if possible carbon ion therapy. The best places from all my research are the hospitals in Munich and Heidelberg Germany they will take a chance and try many things unlike Australia. I am waiting on admission to the hospital. But what do you think of my plans I don’t have anyone to bounce this off. Regards Steve Evans
Hi Steve Not sure if you are directing this to me.... I really haven’t looked into proton therapy or carbon ion therapy. We will probably look into other options down the road should the keytruda cause issues... we have been busy settling back into our home as we have been away for treatment for the winter but now the weather is better we fly back and forth every three weeks... tiring but a must. We also just celebrated the birth ou our second grand daughter... hubby wasn’t supposed to see either of these events !!! We are ecstatic he has !!!! I mentioned earlier a site called Smartpatients... there are many people on there who have been in this battle for a long while and many who research everything !!! I have learned a lot from them. There may be someone in there who has either had or researched proton therapy... give it a try.... all the best... Wanda

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Broulee2340 on Wed May 23, 2018 11:00 AM

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Wendy You are a true inspiration to me with your story and give your husband s big hug for me and your both in my prayers. Regards Steve

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Broulee2340 on Fri May 25, 2018 12:07 AM

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Dear vaquero45 Hi your story is a inspiration I was diagnosed 7/5/18 with gej cancer with 2 local nodes and A small 5cm spot liver , so they took surgery off table and I start 12 rounds folfox 30/5/18 since my diagnosis I have done extensive research and I have a few friends with access to some of the best medical people in Australia. My research seemed to me that the folfox is designed to try to eliminate the small spot on my liver shrink main Tumor and mop up cells in. My blood. I am already on the curcumin also zinc as studies have linked it to supppression of some growth factors in ec , I was her2 negative and my pathology showed my cancer was not high grade but med to low. It was positive for the immunotherapy treatments. I have 6 grown children and 6 great awesome grandsons I want more time with them. However my treatment is as I said to start the folfox then they may do radiation therapy. All my research shows combined chemo/radiation therapy can knock it around. However in this country all the radiation therapy is the old fashioned photon based radiation. I have applied to transfer to 2 hospitals in Germany to complete the folfox in conjunction with proton beam. Therapy. I was very lucky in life I worked extremely hard and built a successful building company so I can afford to go but I just wanted to bounce my plan of you and I have also talked to Wendy about my plan. Any ideas or advice would be really welcome also any advice on dealing with folfox side effects ? Cheers Steve

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Delhi on Sat May 26, 2018 11:59 AM

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On Dec 22, 2016 7:15 AM Ellieandcarl wrote:

my husband has just been diagnosed with Esophageal Cancer stage 4 and we just found out that there is 3-4 large tumours on the liver that are also very aggressive he is only 39 years old and we are devastated and they said they are not going to operate and just go straight to chemotherapy. IS THAT IT just wondering is their any survivors or anyone I can speak too. ??

Hello Ellie, my dad (56) was initially diagnosed with stage 3 Get junction ADENOCARCINOMA. He was given neoadjuvant chemotherapy pre and post surgery. Post surgery he was given 28 fraction of radiation combined with 2 cycle of 5fu chemo cycles. After being cancer free for 4-5 months, we discovered few lesions in liver to be cancerous and also one inguinal lymph node. Currently, he is diagnosed with stage IV adeno carcinoma with metastasis in liver and inguinal lymph node. Doctors have started new targeted therapy Ramucirumab + paclitaxel because our her2neu test was negative. Prognosis at this stage is extremely poor but we are still fighting. Just like you I am also looking for survivors of stage IV. I hope you and your family sail through it. Do let me know the status of your husband? 

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by bhewgley on Tue May 29, 2018 04:21 PM

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What hospitals in Germany are doing state of the art treatment for esophageal cancer stage four you mentioned. Your story was so helpful. Thank you, Bobette Hewgley

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Wickedinns on Tue May 29, 2018 05:27 PM

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On May 26, 2018 11:59 AM Delhi wrote:

On Dec 22, 2016 7:15 AM Ellieandcarl wrote:

my husband has just been diagnosed with Esophageal Cancer stage 4 and we just found out that there is 3-4 large tumours on the liver that are also very aggressive he is only 39 years old and we are devastated and they said they are not going to operate and just go straight to chemotherapy. IS THAT IT just wondering is their any survivors or anyone I can speak too. ??

Hello Ellie, my dad (56) was initially diagnosed with stage 3 Get junction ADENOCARCINOMA. He was given neoadjuvant chemotherapy pre and post surgery. Post surgery he was given 28 fraction of radiation combined with 2 cycle of 5fu chemo cycles. After being cancer free for 4-5 months, we discovered few lesions in liver to be cancerous and also one inguinal lymph node. Currently, he is diagnosed with stage IV adeno carcinoma with metastasis in liver and inguinal lymph node. Doctors have started new targeted therapy Ramucirumab + paclitaxel because our her2neu test was negative. Prognosis at this stage is extremely poor but we are still fighting. Just like you I am also looking for survivors of stage IV. I hope you and your family sail through it. Do let me know the status of your husband? 

Hi My husband was dx March 2016 with adenocarcinoma, Mets to the liver, swollen adrenal gland, swollen lymph node and a possible spot on lung. He did the palliative chemo regime which failed and had six rounds of ten radiation which had to be stopped because he totally blocked and could not swallow his own saliva. He is also HER 2 negative. He ended up with a stent which was scary because it limited the chemos he could have. During all this the oncologist kept pushing sugary food which went against my grain totally. Anyway... in August 2016 I started really pushing healthy eating, walking and really searched for more answers. We put him on high doses of THC cannabis caps and then in October we went to see if he qualified for a clinical trial for keytruda (pembrolizumab). While doing the tests they had to do another scope and low and behold his stent came right out and did not have to be reinserted !!! We were having some progress !!! Now after 20 months he is doing very good. He hasn’t had any sign of tumour since January 2017, and has only a small spot on liver which they now think may be scar tissue. He is still very skinny but eating healthy. All I can say is...never, ever give up, stay positive and LIVE !!! Good luck and happy trails...

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Delhi on Tue May 29, 2018 07:56 PM

Quote | Reply

On May 29, 2018 5:27 PM Wickedinns wrote:

On May 26, 2018 11:59 AM Delhi wrote:

On Dec 22, 2016 7:15 AM Ellieandcarl wrote:

my husband has just been diagnosed with Esophageal Cancer stage 4 and we just found out that there is 3-4 large tumours on the liver that are also very aggressive he is only 39 years old and we are devastated and they said they are not going to operate and just go straight to chemotherapy. IS THAT IT just wondering is their any survivors or anyone I can speak too. ??

Hello Ellie, my dad (56) was initially diagnosed with stage 3 Get junction ADENOCARCINOMA. He was given neoadjuvant chemotherapy pre and post surgery. Post surgery he was given 28 fraction of radiation combined with 2 cycle of 5fu chemo cycles. After being cancer free for 4-5 months, we discovered few lesions in liver to be cancerous and also one inguinal lymph node. Currently, he is diagnosed with stage IV adeno carcinoma with metastasis in liver and inguinal lymph node. Doctors have started new targeted therapy Ramucirumab + paclitaxel because our her2neu test was negative. Prognosis at this stage is extremely poor but we are still fighting. Just like you I am also looking for survivors of stage IV. I hope you and your family sail through it. Do let me know the status of your husband? 

Hi My husband was dx March 2016 with adenocarcinoma, Mets to the liver, swollen adrenal gland, swollen lymph node and a possible spot on lung. He did the palliative chemo regime which failed and had six rounds of ten radiation which had to be stopped because he totally blocked and could not swallow his own saliva. He is also HER 2 negative. He ended up with a stent which was scary because it limited the chemos he could have. During all this the oncologist kept pushing sugary food which went against my grain totally. Anyway... in August 2016 I started really pushing healthy eating, walking and really searched for more answers. We put him on high doses of THC cannabis caps and then in October we went to see if he qualified for a clinical trial for keytruda (pembrolizumab). While doing the tests they had to do another scope and low and behold his stent came right out and did not have to be reinserted !!! We were having some progress !!! Now after 20 months he is doing very good. He hasn’t had any sign of tumour since January 2017, and has only a small spot on liver which they now think may be scar tissue. He is still very skinny but eating healthy. All I can say is...never, ever give up, stay positive and LIVE !!! Good luck and happy trails...

That's a good news !! Finally, some positive response. Even my dad has lost 25+ kgs and above all Because of esophectomy his Intake ihas become limite, but we are trying to provide him multiple small meals despite many sideffects of chemo.

Radiation btook a major toll on his body. Post that we limited his sugar intake and added multiple food with Rich antioxidant properties, protein and macros. We have also recently started giving him alkaline water to balance his toxicity from the treatment.

I have few questions

Did your husband take Ramucirumab (cyramza) in targeted therapy + chemo (palliative regime)

Did you get enrolled for the clinical trials for keytruda? If yes is still going on? If not then which part of the treatment was effective in remission and disease control and what kind of treatment is he undergoing at present? 

Sry for being so inquisitive, though I  am trying  ro be strong and hopefull but at the same time i m extremely worried and traumatised by this whole process. I hope you will understand.

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by odarboish on Wed May 30, 2018 07:42 PM

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How does it "Spread"? ie: Scopes-dr's etc... i ask because my mom (Profile Pic) has stge 2-3 (?) She did 6 CHEMO/RADIATION whilst 2 Biopsies in-between. Last scope shows more Cancer Found. GBY 

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Wickedinns on Wed May 30, 2018 08:30 PM

Quote | Reply

On May 29, 2018 7:56 PM Delhi wrote:

On May 29, 2018 5:27 PM Wickedinns wrote:

On May 26, 2018 11:59 AM Delhi wrote:

On Dec 22, 2016 7:15 AM Ellieandcarl wrote:

my husband has just been diagnosed with Esophageal Cancer stage 4 and we just found out that there is 3-4 large tumours on the liver that are also very aggressive he is only 39 years old and we are devastated and they said they are not going to operate and just go straight to chemotherapy. IS THAT IT just wondering is their any survivors or anyone I can speak too. ??

Hello Ellie, my dad (56) was initially diagnosed with stage 3 Get junction ADENOCARCINOMA. He was given neoadjuvant chemotherapy pre and post surgery. Post surgery he was given 28 fraction of radiation combined with 2 cycle of 5fu chemo cycles. After being cancer free for 4-5 months, we discovered few lesions in liver to be cancerous and also one inguinal lymph node. Currently, he is diagnosed with stage IV adeno carcinoma with metastasis in liver and inguinal lymph node. Doctors have started new targeted therapy Ramucirumab + paclitaxel because our her2neu test was negative. Prognosis at this stage is extremely poor but we are still fighting. Just like you I am also looking for survivors of stage IV. I hope you and your family sail through it. Do let me know the status of your husband? 

Hi My husband was dx March 2016 with adenocarcinoma, Mets to the liver, swollen adrenal gland, swollen lymph node and a possible spot on lung. He did the palliative chemo regime which failed and had six rounds of ten radiation which had to be stopped because he totally blocked and could not swallow his own saliva. He is also HER 2 negative. He ended up with a stent which was scary because it limited the chemos he could have. During all this the oncologist kept pushing sugary food which went against my grain totally. Anyway... in August 2016 I started really pushing healthy eating, walking and really searched for more answers. We put him on high doses of THC cannabis caps and then in October we went to see if he qualified for a clinical trial for keytruda (pembrolizumab). While doing the tests they had to do another scope and low and behold his stent came right out and did not have to be reinserted !!! We were having some progress !!! Now after 20 months he is doing very good. He hasn’t had any sign of tumour since January 2017, and has only a small spot on liver which they now think may be scar tissue. He is still very skinny but eating healthy. All I can say is...never, ever give up, stay positive and LIVE !!! Good luck and happy trails...

That's a good news !! Finally, some positive response. Even my dad has lost 25+ kgs and above all Because of esophectomy his Intake ihas become limite, but we are trying to provide him multiple small meals despite many sideffects of chemo.

Radiation btook a major toll on his body. Post that we limited his sugar intake and added multiple food with Rich antioxidant properties, protein and macros. We have also recently started giving him alkaline water to balance his toxicity from the treatment.

I have few questions

Did your husband take Ramucirumab (cyramza) in targeted therapy + chemo (palliative regime)

Did you get enrolled for the clinical trials for keytruda? If yes is still going on? If not then which part of the treatment was effective in remission and disease control and what kind of treatment is he undergoing at present? 

Sry for being so inquisitive, though I  am trying  ro be strong and hopefull but at the same time i m extremely worried and traumatised by this whole process. I hope you will understand.

No worries about the questions...that is what these sites are for...to help each other through a very tough journey !!! My hubby couldn’t have the ramucirumab because of his stent ... so that’s when he got into the clinical trial for pembrolizumab Oct 2016 with first treatment November 2016. He is still in the trial and doing well...still skinny like I said but still living. He walks as much as he can and does odd jobs around the house. There are days he is tired and days where he is a going concern. Part from the immunotherapy, part from the cannabis, part from the “C”... and part from the chemo/radiation.....The clinical trial is until this coming October/November and after that it is a wait and see kind of thing. The drug company will supply for another year whenever he should need it after the trial ends. All I know is...we never, ever give up hope, enjoy life (even though it is very different) and keep on keeping on !!! There are good days and there are bad days...hang in there... hugs to you and your family!!! Wanda
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