Losing Battle/Need advise

Georgia0701

I first posted here when we found out my husband at age 52 had stage 4 esophageal cancer (months ago).  We initially did chemoradiation and were elated to find the original tumor was completely eradicated at the follow up biopsy.  But unfortunately, the chemo had not been effective and the cancer had mets to the liver and bone.  We then went to MD Anderson in Texas and he was started on a new chemo regimen (he was continued on herceptin as he was HER 2 positive) of folfox.  We just had repeat scans last week and he did not respond to this chemo either.  There may be a clinical trial at Emory with BB1608 that he may qualify for, but I am so at a loss that he has not responded to anything thus far.  He has no other health problems and never even taken medicines prior to this.  We have 3 children at home, with our youngest still in elementary school.  His cancer is now in the muscle, bone, skin, liver, and multiple other lymph nodes. Yet he is still completely alert, works around the house most days and all of his labwork is normal.  I am just wondering if anyone has faced this type of battle before and if there is any hope for us at this point.  My heart is breaking and I am just not ready to lose the love of my life......

paul61

I am sorry to hear that chemotherapy is not working

I am sorry to hear that your husband’s chemotherapy is not working. It sounds like you have been to all the right places in terms of seeking out leading centers of expertise in esophageal cancer treatment.

In terms of the question “is there any hope at this point?” I am a firm believer that as long as we can get up every day there is reason for hope. Herceptin is just the first in a series of targeted therapies for cancer that are under research. I would recommend you subscribe to the “Smart Patients” web site: https://www.smartpatients.com/ under the Esophageal Cancer area. They have a section that specifically tracks emerging trials for various kinds of cancer. You will find a number of Stage IV survivors there living with cancer.

Best Regards,

Paul Adams

McCormick, South Carolina

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

 

Deathorglory

Sorry to Hear Your News

Hello Georgia,

I'm sorry to hear your news.  I had a stage IV recurrence (lung) and was on folfox and herceptin also.  I had a great response and have been testing clean for years now.  It's a shame your husband didn't have that type of response.  As far as having hope goes, sometimes that's all we do have.  I was told, "From where you are, most folks live about seven or eight months.  Some live a couple of months longer, some a couple of months less, and one or two have had complete responses and are living fairly normal lives."  Not one or two percent, just one or two people at all.  I was encouraged to get my affairs in order, sooner, not later.  It was the folfox and herceptin that brought me my miracle.  Obviously, that's not your path, but hopefully there's something that can get you there as well.

It sounds like you're doing right by your husband, taking him to the best places.  Hopefully, there's a trial that can be your miracle.

Hoping for the best for you guys,

Ed

Georgia0701

paul61 said:

I am sorry to hear that chemotherapy is not working

I am sorry to hear that your husband’s chemotherapy is not working. It sounds like you have been to all the right places in terms of seeking out leading centers of expertise in esophageal cancer treatment.

In terms of the question “is there any hope at this point?” I am a firm believer that as long as we can get up every day there is reason for hope. Herceptin is just the first in a series of targeted therapies for cancer that are under research. I would recommend you subscribe to the “Smart Patients” web site: https://www.smartpatients.com/ under the Esophageal Cancer area. They have a section that specifically tracks emerging trials for various kinds of cancer. You will find a number of Stage IV survivors there living with cancer.

Best Regards,

Paul Adams

McCormick, South Carolina

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

 

Thank you so much; I will do

Thank you so much; I will do that.  I saw that you were from McCormick,  SC;  I actually grew up in Greenwood SC.  My dad ran Boggero's Services there in Greenwood. 

Bernie1924

Losing battle

my husband has only 2 months to live....its so hard for me to accept that his esophageal cancer spread to his stomach, thus causing his GERD and nausea problem... it breaks my heart to him him suffering...

paul61

I am so very sorry to hear about your husband

 I am so sorry to hear that your husband is suffering. When you say he “has only two months to live” I assume that is based on an estimate by his oncologist? If so, those are estimates based on statistical information and your husband’s current physical state and treatment plan. Our oncologist’s do the best they can to try to answer a question that is basically unanswerable by us mortals. I think, all we can do as loving caretakers is do the best we can to make each remaining day as painless, peaceful, and full of love as we can. You did not mention your husband’s current treatment plan but there are palliative measures that can be taken to make him more comfortable.

Family members and oncologists are sometimes reluctant to mention hospice because for some people it means “we have given up”. In fact, hospice can provide many medical and supportive services that are just not available to cancer patients and caretakers through standard medical treatment plans.

Your husband is very fortunate to have a loving and caring partner with him during this very difficult time. I am sure that having you by his side gives him strength and comfort.

Best Regards,

Paul Adams

McCormick, South Carolina

 

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

 

Deathorglory

Bernie1924 said:

Losing battle

my husband has only 2 months to live....its so hard for me to accept that his esophageal cancer spread to his stomach, thus causing his GERD and nausea problem... it breaks my heart to him him suffering...

Sorry to Hear Your News

Hello Bernie,

I'm sorry to hear your husband isn't doing well.  I'd like to echo Paul about getting in touch with hospice folks.  Making patients comfortable and managing pain is what they do for a living.  Hopefully, they'd be able to make things better for your husband and reduce his suffering.  There are also doctors who specialize in palliative care.  Check in with your cancer center and see if they have anyone on staff there who could also help.

Wishing you guys peace,

Ed