Stage 4 esophogul cancer

My dad has been diagnosed with stage 4 esophogal cancer. I just want to see what other peoples experiences are. They cant opperate. He is seeing a chemeologist on wednesday. I was looking into cannibis oil treatmemt this morning. Someone, anyone please help me. I have never experienced death/serious illness. I feel so lost and useless.

Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Hello Traci

    Hello Traci,

    I was stage IV my 2nd time around with EC.  I had a recurrence in a lung and was given a pretty grim prognosis (7-8 months).  I was at a top of the line cancer center, but still went to another great center for a 2nd opinion.  They confirmed what my doctor had told me, so I was going to be treated with chemo only.  Stage IVs are frequently offered clinical trials, so I was going to get folfox and a trial.  But my HER2 test came back and I was positive, so herceptin was going to replace the clinical trial alongside the folfox.  Please make sure your dad is tested to determine his HER2 status.  I was fortunate to be at good hospitals where they knew to test.  Herceptin had just been approved for stage IV EC a couple of months before and not everyone knew to test for it.  There are still folks who show up here and aren't tested.  

    The most important thing you can do at this point is to make sure your dad is going to a good cancer center.  They are not all the same.  EC is not a sprained ankle that can be treated equally at your local hospital down the street, unless you are lucky enough to live down the street from a good cancer center.  

    As far as cannabis oil goes, there have been folks here who have said that it helps with anxiety, pain and nausea.  I have no personal experience with it to offer.  There is a thread here, just a few below yours "Touchy subject, medical maijuana"  that might have some 1st person insight.  

    I've been on this ride twice, 1st in 2008 with stage III and a 2nd time in 2011.  I'm now six years from being given a few months to live.  Nothing is perfect, but it's all manageable and I'm grateful to still be here.  Six straight years of weekly herceptin is hopefully keeping another recurrence at bay as I've been testing mostly clean since 2012.  I hope your father gets similar results.

    Best to you guys,

    Ed 

  • Tracii89
    Tracii89 Member Posts: 4
    edited November 2017 #3
    Hi ed my dad had his

    Hi ed my dad had his consultant appointment last wed and was told he would have wks without treatment and a few months with treatment. However they have proceeded to make him wait ten days to have a scan to see if his heart is fit for chemo. This was brought forward until tomoro. He has had a stent put in which has allowed him to eat a bit. Which is alot better then the nothing he was eating. He was taken into hospital tonight. To get his pain med adjusted as he was in alot of pain and to be put on a drip. To hydrate him as he has been sweating alot. I dont think we are looking at much time with him. I asked about his her2 he said they are positive. And that herceptin makes no differece. Thank you very much for your positive reply. You gave me hope. 

    Traci x 

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Hello Traci

    Hello Traci,

    I'd like to strongly disagree with your father's doctors about his HER2 status and herceptin.  I think it can make a BIG difference.  I'm alive today because I was given herceptin along with my chemo.  I had a 7-8 month life expectancy and am now six years testing clean.  Please say that he's being treated at a quality cancer center.  He deserves that much. Glad he can eat some, though.

    Best to Your Family,

    Ed

  • paul61
    paul61 Member Posts: 1,392 Member
    I would ask again about Herceptin

    Traci,

    I agree with Ed, I am not sure why your father's doctors are saying that Herceptin would make no difference to someone who is HER2 positive. Perhaps your father has other medical issues that might impact his prognosis and his medical team's evaluation of the effectiveness of Herceptin in providing him additional time. But I have to say that I am aware of many folks who have had positive experience with Herceptin. I would ask for an explaination of why they do not feel that Herceptin would be helpful.

    Does your father have cardiac issues that might preclude the use of Herceptin? I would ask for an explanation.

    Best Regards,

    Paul

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Seven Year Survivor

     

  • Tracii89
    Tracii89 Member Posts: 4
    Hi guys dad caught pnemonia

    Hi guys dad caught pnemonia and fought back. I traveled to scotland and he will now be receiving herceptin. His camcer has spread to liver and kidney but im trying to stay positive. Even though it is very hard. The herceptin will be mixed with a different chemo. I hope even though it has spread that he will get alot more time with us..

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Pneumonia can be awful

    Hello Traci,

    I had pneumonia while recovering from my esophajectomy.  It was, um..., unpleasant.  Hopefully, your dad has it beaten.  Sorry to hear his cancer has spread to two organs.  My stage IV go-around was a recurrence in a lung.  Folfox & herceptin worked wonderfully, though.  I hope your dad gets results similar to mine.  

    Wishing you guys the best,

    Ed

     

  • Mtngirl7533
    Mtngirl7533 Member Posts: 85
    Traci

    I am a newbie as my husband was recently diagnosed with stage 3 adenocarcinoma! He also tested positive for Her2 and I will most certainly be asking about the Herceptin! From what I hear, it can make a world of difference! The people on this site have much experience with this type of cancer and can teach us a lot! I am praying for your Dad and for you! 

  • tinakemp
    tinakemp Member Posts: 4

    Hello Traci

    Hello Traci,

    I was stage IV my 2nd time around with EC.  I had a recurrence in a lung and was given a pretty grim prognosis (7-8 months).  I was at a top of the line cancer center, but still went to another great center for a 2nd opinion.  They confirmed what my doctor had told me, so I was going to be treated with chemo only.  Stage IVs are frequently offered clinical trials, so I was going to get folfox and a trial.  But my HER2 test came back and I was positive, so herceptin was going to replace the clinical trial alongside the folfox.  Please make sure your dad is tested to determine his HER2 status.  I was fortunate to be at good hospitals where they knew to test.  Herceptin had just been approved for stage IV EC a couple of months before and not everyone knew to test for it.  There are still folks who show up here and aren't tested.  

    The most important thing you can do at this point is to make sure your dad is going to a good cancer center.  They are not all the same.  EC is not a sprained ankle that can be treated equally at your local hospital down the street, unless you are lucky enough to live down the street from a good cancer center.  

    As far as cannabis oil goes, there have been folks here who have said that it helps with anxiety, pain and nausea.  I have no personal experience with it to offer.  There is a thread here, just a few below yours "Touchy subject, medical maijuana"  that might have some 1st person insight.  

    I've been on this ride twice, 1st in 2008 with stage III and a 2nd time in 2011.  I'm now six years from being given a few months to live.  Nothing is perfect, but it's all manageable and I'm grateful to still be here.  Six straight years of weekly herceptin is hopefully keeping another recurrence at bay as I've been testing mostly clean since 2012.  I hope your father gets similar results.

    Best to you guys,

    Ed 

    Stage 4 EC - My Husband

    Hi Ed,

    What a breath of fresh air to read your post.  Congrats on you 6 year survival.  My husband was diagnosed, just finsihed treatment and goes in for a PET scan this thursday to see if he is a surgical candidate..Our oncologist says he should hope for the surgery, but I'm not sure.

     

    What cancer center did you go to?  We are in Chicago, not to crazy about our care, looking into MD Anderson.  I read the following below, can he not get Herceptin if he has been treated with chemo and radiaton?


    Thanks,

    Tina

     

    Gastric Cancer

    Herceptin is approved, in combination with chemotherapy (cisplatin and either capecitabine or 5-fluorouracil), for the treatment of HER2-positive metastatic cancer of the stomach or gastroesophageal junction (where the esophagus meets the stomach) in patients who have not received prior treatment for their metastatic disease.

  • tinakemp
    tinakemp Member Posts: 4

    Traci

    I am a newbie as my husband was recently diagnosed with stage 3 adenocarcinoma! He also tested positive for Her2 and I will most certainly be asking about the Herceptin! From what I hear, it can make a world of difference! The people on this site have much experience with this type of cancer and can teach us a lot! I am praying for your Dad and for you! 

    Newbie

    I am a newbie too and my husband was diagnosed with the same thingk as yours.  Possibly stage 4 as they found a liver met, but couldn't biopsy it, but are saying highly suspicious of cancer.  Where do you live?  Where is your husband being treated?  We are in Chicago, looking to go to MD Anderson.


    Thanks,

    Tina

  • Tracii89
    Tracii89 Member Posts: 4
    guys just a quick.update.

    guys just a quick.update. things have not worked out for dad. His stent became blocked or something ten days ago. He cannot eat or drink anything. He is being moved to a hospice for more comfort and not expected to see christmas. I just want to thank you all for your help, adice, postivity and prayers. And i hope you all receive good results. Xx

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited December 2017 #12
    Tracii89 said:

    guys just a quick.update.

    guys just a quick.update. things have not worked out for dad. His stent became blocked or something ten days ago. He cannot eat or drink anything. He is being moved to a hospice for more comfort and not expected to see christmas. I just want to thank you all for your help, adice, postivity and prayers. And i hope you all receive good results. Xx

    Sorry to Hear Your News

    Hello Traci,

    I'm so sorry to hear your news.  Unfortunately, this cancer has a very high mortality rate.  I hope your father remains pain free and comfortable and I wish the best to your whole family at this time.

    All the best,

    Ed

  • paul61
    paul61 Member Posts: 1,392 Member
    edited December 2017 #13
    I am so sorry to hear about your Dad

    Traci,

    I am sorry to hear that treatment is not going well for your Dad. I am glad that your medical team has suggested Hospice to make him more comfortable and to provide both him and his family the comfort and support needed at this time. Sending positive thoughts for a gentle and peaceful transition.

    Best Regards,

    Paul

  • Momo43
    Momo43 Member Posts: 1
    edited February 2018 #14
    Esophageal cancer

    My husband was diagnosed with Stage 3 esphagel cancer in Jan. 2016. He was a veteran. He did not get treatment until late March. He took 6 weeks of chemo and radiation. He finished in May. Should have had surgery to remove the tumor within 6 weeks but did not get it until Sept 7. They removed the top portion of his stomach and the lower portion of his esophagus.  After a week they had to give him a treacheotomy because he was having trouble breathing due to his COPD and anxiety from PTSD. The care he received was good, just too late. He passed away from an acute pulmonary arrest due to esophageal cancer. The VA too way to long in getting treatment. Now they say his death is not service related, even tho he served 3 tours in Vietnam, therefore, I cannot get spousal benefits.  He served 22 years in the Navy and was very proud of his service. He would not be proud of how the VA is treating the ill veterans and their families.  Thanks for letting me vent.  It is good to know others are out there. If I can be a listening ear or offter any help, please email me.

     

  • GeriR
    GeriR Member Posts: 20
    Momo43 said:

    Esophageal cancer

    My husband was diagnosed with Stage 3 esphagel cancer in Jan. 2016. He was a veteran. He did not get treatment until late March. He took 6 weeks of chemo and radiation. He finished in May. Should have had surgery to remove the tumor within 6 weeks but did not get it until Sept 7. They removed the top portion of his stomach and the lower portion of his esophagus.  After a week they had to give him a treacheotomy because he was having trouble breathing due to his COPD and anxiety from PTSD. The care he received was good, just too late. He passed away from an acute pulmonary arrest due to esophageal cancer. The VA too way to long in getting treatment. Now they say his death is not service related, even tho he served 3 tours in Vietnam, therefore, I cannot get spousal benefits.  He served 22 years in the Navy and was very proud of his service. He would not be proud of how the VA is treating the ill veterans and their families.  Thanks for letting me vent.  It is good to know others are out there. If I can be a listening ear or offter any help, please email me.

     

    I am so very sorry to hear

    I am so very sorry to hear about your husband. I know it's been difficult. This is not an easy road to travel for the patient or the family members. My husbands treatment was also delayed because of mistakes made. He now has metastasis to right hip and left adrenal gland and is having more chemo for the next 6 months.  His surgery was in vain unfortunately and he has suffered much as a result.  I will keep you in my prayers. 

    Geri

  • Daina1997
    Daina1997 Member Posts: 2
    Hi Traci,

    Hi Traci,

    Trust me i know how you feel too, same thing for my dad, I have been seeking advised as well bcz i cannot bear to give up hope no matter what persons say.

     

    Daina