My husband has terminal esophageal cancer, after initial radiation & chemo he [...]

Posted by DeeNik @dianelinda, Oct 29, 2014

My husband has terminal esophageal cancer, after initial radiation & chemo he was clear then it came back. Its been almost 3 yrs that he has been on palliative chemo at Dana Faber & has never had a bad reaction to chemo until last month when he was getting his 2nd. round of Doxetere. His white blood cell count was below the normal range on the day of chemo but the NP went ahead w/chemo. he had a sore that was infected, a very small sore but she said it was ok. That weekend he landed in the hospital because that little sore became a hugh sore & we found out his WBC's were at ,8 almost gone.

Today we went in to see what the dr. wanted to do. The dr. said nothing, no more pallitative chemo, nothing more because of his reaction to the Doxetere. We had been told previously after the Doxy there were other chemos. His cancer is still small ( I would suspect because of the chemo) it has not
spread to any other parts of his body & is still localized & smaller then when it was 1st discovered. I am a bit baffled why the dr. would discouintinue all treatment. I asked him what we could expect & he said he had no idea because my husband should have been dead 2 yrs. ago & he is in a category all his own. I also asked if he would have a scan at some time in the future & was told there was no need for one. The dr. will see us every 6 to 8 weeks to talk about any concerns we might have.

I am totally baffled by all of this. We feel as if the dr. quit on him while he was still basically ok. It was very disappointing. I was wondering if anyone else has had this experience. We're both feeling a bit let down tonight. I am however happy I followed his pulmonologist's advice about it being time to get a new perspective on this & have another oncologist take a look. We had a meeting here in the state where we live & we go for a cat Scan to stage it next week. our initial visit we were told there were many chemos still not tried with few side affects & Doxetere is one she would not have used on my husband.

I would appreciate any feedback anyone can give me, any thoughts are appreciated. I would think since he isn't following any of the norm for this cancer that Dana-Faber would have been interested in keeping him on for no other reason then research value since the dr. can't figure out why he is reacting different then all the other patients.

Thanks in advance & sorry this was so long.

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sue b | @suebee | Oct 29, 2014

Wow! I'm so glad you are going to another doctor!!! Let go of the negative from that experience and embrace the positive from your new oncologist. Please do not be afraid to look elsewhere if you aren't satisfied with your current medical provider. Sincerely Sue

charles | @charles | Oct 30, 2014

I am glad to hear how well your husband has done over the past few years, it sounds like the folks at DFCI have done a remarkable job helping your husband beat expectations from this disease. Its hard to know why your doctor would have not recommended additional chemo following Taxatere but I suspect he is afraid your husbands bone marrow which produces the infection fighting WBC's wont tolerate additional chemo. If your husband is asymptomatic and at risk of life threatening infections following the use of additional palliative chemo due to his very low WBC, why risk reducing his quality of life? Regarding getting additional scans, many physicians dont believe tests should be ordered unless the results of the test will change their management. Getting a scan wont change what the doctor recommends so why wast the time and money to bet the procedure? Its always good to get a second opinion on these matters and i look forward to hearing what is recommended so we can all learn from your experience.

Thanks for sharing
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DeeNik | @dianelinda | Oct 31, 2014

In reply to @charles "I am glad to hear how well your husband has done over the past few years,..." + (show)

Charles my husband only had 2 very low dose Taxetere treatments the 2nd one given when is WBC count was below normal, it did however bounce back w/in days. We are getting a 2nd opinion because we just aren't comfortable w/how this went. The dr. at Dana-Faber has done a wonderful job treating my husband, it was his NP who gave the chemo when his WBC's were already too low. Since the cancer is still localized I am hoping that maybe chemo twice a month instead of every week might help. Will keep you posted.

charles | @charles | Oct 31, 2014

In reply to @charles "I am glad to hear how well your husband has done over the past few years,..." + (show)

Thanks for the update and let us know how it goes.
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penuel | @avioren | Nov 3, 2014

In reply to @charles "I am glad to hear how well your husband has done over the past few years,..." + (show)

DeeNik, I did not know about Taxetere. So I looked and found this:

http://www.cancer.med.umich.edu/files/tc-chemotherapy-regimen.pdf

Is it the same treatment that you're writing about?

DeeNik | @dianelinda | Nov 4, 2014

In reply to @charles "I am glad to hear how well your husband has done over the past few years,..." + (show)

Yes that is what he had, he was given 2 very small does 2 weeks in a row, his treatment was pallitative so he was going to get small doeses once a week instead of the 1 big dose every 4 weeks. His face is still extremely swollen from it & its been over a month since he had it & was hospitalized.

tstone | @tstone | Nov 5, 2014

I am praying for you. Hoping that your second opinion will have a positive result. God bless both of you.

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