Update on husbands EC

AngelaMarsh

Hello everyone,

its been a while so thought it time to update you. 

we've been on quite a roller coaster ride.In my husbands last PET scan in June something was seen in the liver and there was a thickening in the stomach - I may have already mentioned this - I just don't remember.

Since then he had a malignant tumor in his cerebellum which has since been removed.  I found it amazing but he was out of the hospital 2 days later with very little discomfort. He then underwent Gamma knife radiation (they said only one therapy was needed) and was back to work within days. He had been considered for one of 2 immunotherapy trials because the belief is that the 2 spots in his liver and the thickening in his stomach are malignancies since the brain tumor was a mets of the EC. To look at him and talk with him you'd never know any of this transpired.

While waiting for a complete recovery and probably the insurance company, both trials ended with new ones to start in approx 6 weeks. These trials are at Yale where he had the surgery and Gamma knife and where his oncologist is affiliated as well as our local hospital. I'm sure there are trials elsewhere but my husband hasn't made up his mind if that's the route he wants to take - he doesn't like the idea of being a guinea pig especially since there are other conventional chemos which might help him. Should he go with the conventional chemo he may not be eligible for future trials So it's a difficult decision.

He's started having difficulty swallowing certain foods again and a PET scan has been ordered before starting another chemo regimen which hopefully will put him in complete remission again.

All things considered we're doing well. He continues to commute to downtown NYC to work, I continue to pray and make softish foods for dinner while he eats soft foods at breakfast and lunch - the man is on a 5:50am train every morning! But in all honesty I think working helps keep his mind busy.

I'llbe in touch again with other updates but again I don't know when. In the meantime may God bless and help us all. I send my best wishes and positive thoughts.

 

paul61

Your husband is a strong guy to be working through treatment

Angela,

I have great respect for anyone who can continue to work through treatment for esophageal cancer. It sounds like your husband has some difficult choices in front of him in terms of what path to take for systemic cancer treatment. If it were me, I would consider immunotherapy based treatment plans over traditional chemotherapy treatments. You don’t mention if your husband has had success with traditional chemotherapy drugs, I assume the answer is no?

If I were making the choice I would consider the alternatives in this order:

1. Immunotherapy based treatment that also included a proven chemotherapy agent
2. Immunotherapy based drugs with some proven track record like Herceptin or Keytruda
3. Immunotherapy based trials that are in phase II where there has been some proven positive results

Even with traditional chemotherapy we are all “guinea pigs” because response and side effects to even traditional chemotherapy agents varies widely by patient.

Of course, since you mention insurance as an issue, some trials fund the treatment costs and this can be significant with new medications and treatment approaches.

The choices are difficult with no guarantees but at least there are choices and your husband sounds like a survivor.

Wishing you both the best.

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

 

AngelaMarsh

paul61 said:

Your husband is a strong guy to be working through treatment

Angela,

I have great respect for anyone who can continue to work through treatment for esophageal cancer. It sounds like your husband has some difficult choices in front of him in terms of what path to take for systemic cancer treatment. If it were me, I would consider immunotherapy based treatment plans over traditional chemotherapy treatments. You don’t mention if your husband has had success with traditional chemotherapy drugs, I assume the answer is no?

If I were making the choice I would consider the alternatives in this order:

1. Immunotherapy based treatment that also included a proven chemotherapy agent
2. Immunotherapy based drugs with some proven track record like Herceptin or Keytruda
3. Immunotherapy based trials that are in phase II where there has been some proven positive results

Even with traditional chemotherapy we are all “guinea pigs” because response and side effects to even traditional chemotherapy agents varies widely by patient.

Of course, since you mention insurance as an issue, some trials fund the treatment costs and this can be significant with new medications and treatment approaches.

The choices are difficult with no guarantees but at least there are choices and your husband sounds like a survivor.

Wishing you both the best.

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 for your

Thank you so much for your words of wisdom. My husband was in complete remission after folfox with herceptin for 6 cycles. Unfortunately he ended up in hospital with a bleeding ulcer and afib but got through that well. We were thrilled with the remission then in June the PET scan showed"shadows". Too small or in too difficult a spot to biopsy so we waited then the brain tumor was diagnosed. He continues on herceptin even now. If he returns to the folfox treatment he'll be eligible for immunotherapy at Yale if he starts another conventional chemo he will no longer be eligible at Yale but I'm thinking there could be trials elsewhere but he's very comfortable with the Yale doctors. one of the next yale trials is in fact a 2nd trial -  they apparently are calculating results now - that's why the 6 week wait.

i appreciate your input and will tell him what you've said. Thank you again, angela

Zzdunne

Angela - we seem to be at a similar stage

Hello Angela. I read your post with interest as I also followed your posts earlier this year and wondered how you were going.I suspect my husband is older than yours (61). He was diagnosed in August '16, had chemo / radiation and was eligible for an esophagectomy in November as at that stage there were no metastases. We went to one of the major hospitals for this operation in Australia and a leading surgeon. After an extended hospital stay due to a couple of complications he was recovering well. During the work up for an immunotherapy trial in February ( in the hope of preventing a recurrence) it was discovered that he already had liver mets. A great shock. He had 9 rounds of FOLFOX which reduced his tumours significantly then plateaued. Because of this and side effects his oncologist switched him to a maintenance regime which I believe was similar to your husbands ( he had one infusion of 5FU only then 3 cycles of Xeloda - essentially a tablet form of 5FU.). As the side effects are tolerable it was hoped this would hold the tumours steady and buy time. However, scan results this week showed that this regime did not work for him and the liver mets have increased in size and some new ones detected. He will be starting on Keytruda ( immunotherapy) next week. He will not be on a trial but will be accessing this 'off label'. This means that because it is available in the country on the govt funded prescription scheme for other cancers ( melanoma and lung) we can 'buy' it privately (its very expensive). As there have been some promising results so far with this and Opdivo for Esophageal cancer we are going down this route. His oncologist believes this is the right time to try the immunotherapy option instead of risking further (different ) chemo which may not help and risk him becoming very unwell which may render him unable to tolerate the immunotherapy. Right now he is reasonably well - a much smaller version of his previous self but no obvious symptoms of the disease. Because of the Esophagectomy he has no problems swallowing for which we are very grateful. I fervently hope no recurrence in that area. We understand that this is a long shot. There are no guarantees and relatively small numbers have a durable response but we've been on the right side of the stats before so we'll give it our best shot. It can take 3 months to see a result...another reason I suspect not to wait too long. The side effects for most people are better than chemo ( but of course there are always awful ones to watch for). There is always the option for some more chemo if this doesn't work. We are trying to live as much as possible like a normal newly-retired couple with a new grandson who gives us great joy. At this stage its about enjoying what we can for as long as we can. I hope your husband finds a treatment that works for him and I'll be thinking of you. Janine