Looking for support

Aussiegirl76
Aussiegirl76 Member Posts: 12
in Esophageal Cancer #1
Hi, my dad was dx with esophageal cancer (adenocarcinoma) in may. I am in Australia but can't seem
To find this kind of supportive network, so was hoping I could join. Dad is 63 and lost his dad to ec 30 yrs ago. My mums dad also died from this 15yrs ago. I know it's a tough battle. My dad was dx at an earlier stage than my grandfathers and his is operable. I don't know exact stage
But it is contained in the esophagus with no mets and we think no lymph nodes. It is quite big though. 2 weeks ago dad finished his chemo and radiotherapy (3 rounds of cisplatin and 5fu at 5 days every 4 weeks, and last 3 chemo rounds overlapped 6 weeks of daily radiotherapy). I understand this was to reduce the size of his cancer and reduce risk of it spreading before he had surgery in 5/6 weeks. He has a heap of tests in mid sept and then they will determine if he must have mie or full surgery. He is at second best cancer centre in Australia. The best is 5 hours flight away. He has a team of v good doctors who specialize in ec and gi cancer.
I have learnt a lot in 3 months, and know our family has a tough road ahead. Dad had pneumonia just before his 3rd round which was promptly treated and only delayed him a week. But after 3rd round he developed a much more aggressive strain of pneumonia and was v weak. He had been in hospital 12 days. Infection cleared but his neutrophils and platelets are v v low and not coming back as quick as we had hoped. He lost 22lbs in the 2 weeks before he was admitted but has halted weight loss now. He is improving but seems so I'll. I can't imagine him undergoing surgery. Radiotherapy seems to have caused a lot of pain in his gullet and also irritated his lungs. Anyone else really hit rock bottom after radio and chemo and still had surgery on schedule?

Comments

  • Freida
    Freida Member Posts: 182
    #2
    Hi Aussie girl.
    Welcome to
    Hi Aussie girl.
    Welcome to the group (though I'm sorry you need us).

    Bill definitely hit rock bottom after radio and chemo. He did not have much in the way of side effects during treatment - no nausea etc, But in the 3-4 weeks after radiation was over he started suffering a lot more pain, nausea, and difficulty eating and actually vomited several times which had never happened during chemo. The doctors did not not really prepare us for this, though some of the nurses had forewarned us. Turned out he had severe ulceration in the esophagus from the radiation.

    The irritation of the lungs can be an ongoing thing also. bill just had his firs 3 month check up and the lungs show more damage than they did 3 months ago. The doctor said that this is not uncommon.

    Can't help you as far as the impact on surgery dates as Bill was not a surgery candidate die to other health issues.

    It is a tough road, but you have come to the right place for support and virtual hugs. There is also a CSN facebook page if you have facebook.
    All the best
    Freida
    Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.
  • Aussiegirl76
    Aussiegirl76 Member Posts: 12
    #3
    Freida said:

    Hi Aussie girl.
    Welcome to
    Hi Aussie girl.
    Welcome to the group (though I'm sorry you need us).

    Bill definitely hit rock bottom after radio and chemo. He did not have much in the way of side effects during treatment - no nausea etc, But in the 3-4 weeks after radiation was over he started suffering a lot more pain, nausea, and difficulty eating and actually vomited several times which had never happened during chemo. The doctors did not not really prepare us for this, though some of the nurses had forewarned us. Turned out he had severe ulceration in the esophagus from the radiation.

    The irritation of the lungs can be an ongoing thing also. bill just had his firs 3 month check up and the lungs show more damage than they did 3 months ago. The doctor said that this is not uncommon.

    Can't help you as far as the impact on surgery dates as Bill was not a surgery candidate die to other health issues.

    It is a tough road, but you have come to the right place for support and virtual hugs. There is also a CSN facebook page if you have facebook.
    All the best
    Freida
    Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.

    Thanks freida. It's helpful
    Thanks freida. It's helpful to know of similar experiences. Our docs are quite good but no one seems to warn what might come next. Maybe because everyone is different and they don't want to frighten anyone. My dad has a history of acid reflux and asthma. I wonder if that makes his esophagus and lungs more sensitive to side effects? Dad has struggled to eat solid food because of acute pain in his esophagus, and has had increasing levels of pain patches and meds, and now has to have a numbing liquid before each meal. Now he is in hospital he is eating well because they are managing his pain v well. Not sure how well he will cope at home unless they give him same numbing drugs to take at home. How long til Bills ulcerated esophagus healed?
    Was there any specific treatments or meds that helped bill bounce back, or is it just time? Did he eat by mouth or have a feeding tube put in? There are certain foods dad can't have like tomato and orange as they create more pain. I wonder if he shouldn't have a j tube in.
    It's hard knowing how much to advise or help dad. My mum is a pillar of strength. I have 3 small children and all I have done is some research as well as lots of cooking! It's dads journey but I want to help where I can.

Discussion Boards