The Big Cannons V A Compromise Approach to Chemo

Hi everyone I posted this note yesterday against my EC TREATMENT OPTIONS thread then noticed that it was at the very bottom of a very long thread and I thought it best to make it more "user friendly"
I see that I last posted a note on April 1. I'm not sure about the USA but in the UK that was "April Fools Day" and is traditionally a day when people play pranks or tricks on each other to try to catch each other out. This somehow seems ironic considering the "tricks" that life plays on us all.
I'm writing to give you an update on my brother and also to ask for your advice on the wisdom of his new treatment plan.He is stage IV and he restarted chemo on 31st March. Anyone who has followed my previous posts may recall that we had some really great advice from you guys when, at the end of his last treatment programme**, he was offered the opportunity to take part in a trial. He refused the trial,changed to a new consultant and started a course of Taxotere plus Crisplatin around 3 weeks ago.He is also on steroids and additionally will get an injection after chemo to help keep the white blood cells in check thereby allowing him to keep on his new 3 weekly chemo programme. He has also just had a "positive" result back from a HER 2 test and when he next gets treatment on Thursday (all going well)he will get Herceptin (along with the Taxotere and Crisplatin)He has not responded well to the Taxotere and Crisplatin and I worry about the side effects of adding a third drug.He has already lost a lot of weight, has lost his appetite and finds that when he tries to eat, he vomits up what he has just eaten. His calorie intake is in the hundreds per day. He has severe stomach pain and is always cold. Mentally he is pretty low but tries to mask this. He has morphine he can take if needed but he refuses to take this as he is still trying to get to work for a few hours each day ( he has to be given a lift there and back) and wants to keep in control of his mind, if not his body. The question I would welcome your thoughts on is the one that many of you have unfortunately had to confront. I have followed Callaloo's thread posted on 4th April which is very convincing with regard to settling for a compromise approach to treatment rather than the alternative of the "big cannons" and the feedback to this has been excellent. I'm not really sure what we would call "big cannons" - does Taxotere plus Crisplatin plus Herceptin every three week fall under that category?
I'm really not sure of the following:
Is it the chemo or the cancer which is causing my brothers current condition?
Since he is now due more chemo plus Herceptin will his condition worsen with more treatment?
If it does worsen will this be short term & will the meds manage to slow the cancer spread?
Alternatively would a compromise approach with one drug for chemo rather than three improve my brother's physical condition and quality of life?
I know that there are no absolutes here but would welcome any thoughts you have on this.
My thanks again and god bless to you all
Ecourtney

** previous treatment plan was from 19th July 2010, six cycles lasting three weeks each. On the first day of each cycle, attended the hospital as an out patient to receive 100mg of Epirubicin and 260mg of Oxaliplatin intravenously. Also took 2400mg per day of Capecitabine orally over each three week cycle. On the last three cycles the Epirubicin was reduced to 80mg ( Two cycles ) and then 50mg due to side effects discussed below. Over the period of Chemo, ability to swallow was reduced and after the sixth cycle of Chemo,was given combination Chemo / Radiotherapy to try to improve swallowing. The Chemo was Cisplatin administered intravenously over night in hospital followed by 2400mg per day of Capecitabine orally at home over three weeks. The Radiotherapy was administered over ten days as an out patient starting on the day after the Cispaltin drip. The Radiotherapy finished on 17th Jan 2011 and the last dose of Capecitabin was on 25th Jan 2011. Also took anti sickness drugs and steroids throughout Chemotherapy treatment programme.
Kind regards
Ecourtney
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Comments

  • mrsbotch
    mrsbotch Member Posts: 349
    Chemo
    Hi

    I am so sorry your brother is so sick. My husband's Ec recurred in Sept of last year. He had had the MIE but never any chemo. They put him on Cisplatin, Taxotere, and 5 FU in Oct. He was never well after that. This chemo was awful. He lost so much weight, could not eat, and was throwing up green bile. He passed away 8 weeks ago. I really think quality of life is better than quantity. he told me that the one thing he regretted was taking such harsh chemo. I do not want to make you feel badly but this is what happened to us.


    If you want to post privately please do so.


    I am so sorry he is so sick

    barb
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Thinking of you
    Hello ecourtney
    So sorry to hear of how sick your brother is. I was a caregiver for my dad. He passed a year ago March from EC with mets to the liver. If I knew then, what I know now....We would not have started the chemo again once it went to his liver. I totally agree that quality of life is much more important than quantity. He was so sick the last 3 mos. The chemo, steroids, and pain meds had so many side effects, he was sick the whole time. Go with your gut feelings. If your brother can not have surgery to remove the tumor, and the chemo treatments are making him sick...stop. You both know when enough is enough. The chemo treatments are not a cure. They are just for prolonging his life, but who wants to live a life like that? Hope this helps. Keep in touch.
    Tina in Va
  • ecourtney
    ecourtney Member Posts: 39
    mrsbotch said:

    Chemo
    Hi

    I am so sorry your brother is so sick. My husband's Ec recurred in Sept of last year. He had had the MIE but never any chemo. They put him on Cisplatin, Taxotere, and 5 FU in Oct. He was never well after that. This chemo was awful. He lost so much weight, could not eat, and was throwing up green bile. He passed away 8 weeks ago. I really think quality of life is better than quantity. he told me that the one thing he regretted was taking such harsh chemo. I do not want to make you feel badly but this is what happened to us.


    If you want to post privately please do so.


    I am so sorry he is so sick

    barb

    Chemo
    Hi Barb,
    Thanks for getting back to me quickly and sorry to hear of your own loss. The one constant I have learnt from reviewing postings on this site is how compassionate and loving the caregivers are - when we talk about quality of life, in my experience people like yourself make a tremendous difference to the patients quality without even knowing you are doing it. I hope that at least gives you some comfort
    Anyway my brother has woken up today with a new sense of purpose. He feels that he must take the next scheduled chemo session and will take morphene to fight the pain he always has in his gut. His condition seem pretty much close to your husbands. He is chasing up scans and scopes to try to find out exactly what is going on inside him and will be discussing feeding options with his consultant tomorrow.
    Kind regards
    E Courtney
  • ecourtney
    ecourtney Member Posts: 39

    Thinking of you
    Hello ecourtney
    So sorry to hear of how sick your brother is. I was a caregiver for my dad. He passed a year ago March from EC with mets to the liver. If I knew then, what I know now....We would not have started the chemo again once it went to his liver. I totally agree that quality of life is much more important than quantity. He was so sick the last 3 mos. The chemo, steroids, and pain meds had so many side effects, he was sick the whole time. Go with your gut feelings. If your brother can not have surgery to remove the tumor, and the chemo treatments are making him sick...stop. You both know when enough is enough. The chemo treatments are not a cure. They are just for prolonging his life, but who wants to live a life like that? Hope this helps. Keep in touch.
    Tina in Va

    Chemo
    Hi Tina,
    Thanks for your helpful comments. My concern really is trying to understand if the chemo, meds and steroids will worsen his already poor condition but he does have a new resolve
    today. He takes the view that his stomach was pretty much messed up before his last chemo session so he will persevere with at least his next round of chemo and is pushing to get scopes and scans to find out what's going on inside his body and what is stopping the food getting down and staying.I know that he has a node in the area of his liver but I understand "this in not liver cancer" what do I know?
    We know the chemo is not a cure - its just so difficult to understand how to find a way forward which retains some quality.
    ECourtney Scotland
  • This comment has been removed by the Moderator
  • ecourtney
    ecourtney Member Posts: 39
    unknown said:

    This comment has been removed by the Moderator

    Chemo
    Hi Sherri,
    Thanks for the advice - I'm just heading out to hospital with my brother so will keep this short. unlike Jim, my brother is sure that his stomach issues predate his last chemo round. He is due chemo today and he is set on having this.He hopes to have endoscopy and scans within the week to find out what the tumour is doing to him and what is going on in his stomach
  • ecourtney
    ecourtney Member Posts: 39
    ecourtney said:

    Chemo
    Hi Sherri,
    Thanks for the advice - I'm just heading out to hospital with my brother so will keep this short. unlike Jim, my brother is sure that his stomach issues predate his last chemo round. He is due chemo today and he is set on having this.He hopes to have endoscopy and scans within the week to find out what the tumour is doing to him and what is going on in his stomach

    Chemo
    Hi Sherri,
    Apologies for ending the last note a little abruptly but I was just heading out to hospital with my brother who is currently on a Herceptin drip. He is keeping a very open mind regarding how he proceeds with chemo going forward. Unfortunately it is a bit of a trial and error approach but he feels he must do something in the hope that it adds time.
    Food remains a real concern this has not yet been resolved yet but we will take this up with his consultant on monday. I think the route you took with Jim is commendable and we hope to benefit from your experiences.
    Kind regards
    Ecourtney
  • Callaloo
    Callaloo Member Posts: 135
    So many hard questions
    Ecourtney, I think all stage IVs have those same questions. As you know, I decided on the low-key approach which is working out well on the "quality of life" front. But you need to know that I'm still ambivalent about my choice and if my cancer were as aggressive and invasive as your brother's appears to be, I have to admit that I would probably have gone with the multi-agent approach, and I'm still prepared to go that way if my next CT scan shows no improvement.

    I'm still in excellent health and I never had any health problems from the start, so I believe I could tolerate at least one more go with the big guns. Also, I have excellent health care -- I am monitored closely as to all my vitals-- red and white blood cell counts, kidney and liver function, etc., so that a downhill slide can be detected quickly and, hopefully, reversed. These factors go a long way in defining the options and shaping the answers.

    When I was on chemoradiation last year, I experienced every negative thing your brother is now enduring. I nearly called it off after the 3rd round it got so bad, but I stuck it out. The treatment did, in fact, knock out the cancer (but obviously not all of it). I recovered fully after chemo ended. And that could very well be the case with your brother.

    I also feel that one of the keys to my having been able to tolerate and overcome the harsh effects of multi-agent chemo was not trying to continue working. I stayed home (and in bed) for the duration, and towards the end, when it got really bad, I took all the pain meds I needed to control the pain, without any thought to trying to stay alert and functional. It worked for me, because I thought I could see the light at the end of the tunnel.

    Everyone is different and our decisions have to be based on our own medical fitness and circumstances. At some point, you need to trust your doctors, or find a doc you can trust to answer the questions and help in the decision-making.

    Lu
  • ecourtney
    ecourtney Member Posts: 39
    Callaloo said:

    So many hard questions
    Ecourtney, I think all stage IVs have those same questions. As you know, I decided on the low-key approach which is working out well on the "quality of life" front. But you need to know that I'm still ambivalent about my choice and if my cancer were as aggressive and invasive as your brother's appears to be, I have to admit that I would probably have gone with the multi-agent approach, and I'm still prepared to go that way if my next CT scan shows no improvement.

    I'm still in excellent health and I never had any health problems from the start, so I believe I could tolerate at least one more go with the big guns. Also, I have excellent health care -- I am monitored closely as to all my vitals-- red and white blood cell counts, kidney and liver function, etc., so that a downhill slide can be detected quickly and, hopefully, reversed. These factors go a long way in defining the options and shaping the answers.

    When I was on chemoradiation last year, I experienced every negative thing your brother is now enduring. I nearly called it off after the 3rd round it got so bad, but I stuck it out. The treatment did, in fact, knock out the cancer (but obviously not all of it). I recovered fully after chemo ended. And that could very well be the case with your brother.

    I also feel that one of the keys to my having been able to tolerate and overcome the harsh effects of multi-agent chemo was not trying to continue working. I stayed home (and in bed) for the duration, and towards the end, when it got really bad, I took all the pain meds I needed to control the pain, without any thought to trying to stay alert and functional. It worked for me, because I thought I could see the light at the end of the tunnel.

    Everyone is different and our decisions have to be based on our own medical fitness and circumstances. At some point, you need to trust your doctors, or find a doc you can trust to answer the questions and help in the decision-making.

    Lu

    The Big Cannons
    Hi Lu
    Thank you for getting back to me with your advice. Firstly let me wish you well with your own situation. Sometimes a paragraph cannot really put into context how "dark" the dark days can be. I see you decided to surrender completely to the pain meds for a time. I think that this is looking like a strong option for my brother depending on how then next couple of days shape up following his chemo on thursday- but it is an option he has resisted so far.
    Its also encouraging to see that you have come through the other side of this and that you are keeping your options open going forward.
    I think we might now have a doctor we can trust though the consultation coming up on Easter Monday will confirm this or otherwise.
    Thanks again for the very positive advice
    Kind regards
    Ecourtney
    NB have a great Easter weekend!
  • yesterday12345
    yesterday12345 Member Posts: 8
    Callaloo said:

    So many hard questions
    Ecourtney, I think all stage IVs have those same questions. As you know, I decided on the low-key approach which is working out well on the "quality of life" front. But you need to know that I'm still ambivalent about my choice and if my cancer were as aggressive and invasive as your brother's appears to be, I have to admit that I would probably have gone with the multi-agent approach, and I'm still prepared to go that way if my next CT scan shows no improvement.

    I'm still in excellent health and I never had any health problems from the start, so I believe I could tolerate at least one more go with the big guns. Also, I have excellent health care -- I am monitored closely as to all my vitals-- red and white blood cell counts, kidney and liver function, etc., so that a downhill slide can be detected quickly and, hopefully, reversed. These factors go a long way in defining the options and shaping the answers.

    When I was on chemoradiation last year, I experienced every negative thing your brother is now enduring. I nearly called it off after the 3rd round it got so bad, but I stuck it out. The treatment did, in fact, knock out the cancer (but obviously not all of it). I recovered fully after chemo ended. And that could very well be the case with your brother.

    I also feel that one of the keys to my having been able to tolerate and overcome the harsh effects of multi-agent chemo was not trying to continue working. I stayed home (and in bed) for the duration, and towards the end, when it got really bad, I took all the pain meds I needed to control the pain, without any thought to trying to stay alert and functional. It worked for me, because I thought I could see the light at the end of the tunnel.

    Everyone is different and our decisions have to be based on our own medical fitness and circumstances. At some point, you need to trust your doctors, or find a doc you can trust to answer the questions and help in the decision-making.

    Lu

    chemo and you
    Hello,

    My son, 41 iwht two young daughter, was diagnosed in December with EC and has had surgery and has just completed his second round of chemo. He was diagnosed T3N1Mo. He is contemplating discontinuing chemo after three rounds. His thinking is that three is enough to do the job and will allow him to get back to his anti-cancer diet more quickly without doing too much damage to other organs. Do you know why the Docs recommend 6 rounds? One thread said that she got sick and actually discontinued chemo after two rounds and has been cancer free ever since. She quit because she got so ill from the chemo and he Dr. at the hospital said that if her were her Dr. he would stop at three because the next three are more a safety net. Any thoughts?

    Thanks,
    Mark
  • ecourtney
    ecourtney Member Posts: 39

    chemo and you
    Hello,

    My son, 41 iwht two young daughter, was diagnosed in December with EC and has had surgery and has just completed his second round of chemo. He was diagnosed T3N1Mo. He is contemplating discontinuing chemo after three rounds. His thinking is that three is enough to do the job and will allow him to get back to his anti-cancer diet more quickly without doing too much damage to other organs. Do you know why the Docs recommend 6 rounds? One thread said that she got sick and actually discontinued chemo after two rounds and has been cancer free ever since. She quit because she got so ill from the chemo and he Dr. at the hospital said that if her were her Dr. he would stop at three because the next three are more a safety net. Any thoughts?

    Thanks,
    Mark

    Chemo and you
    Hi Mark,
    Sorry to hear about your son . I'm happy to answer your question as a layman if it helps. I honestly wish that there was a straightforward answer to this question. My brothers case is further advanced at stage 4 than your son and my brothers cancer was too far advanced so chemo was the only option available. The 6 initial rounds at 3 weekly intervals were put forward at the consultants behest and I have to say that although this caused us some concern and he suffered the side effects I mentioned in my earlier postings his big concern at the end of this was that his consultant had adopted a wait and see approach which worried us greatly. As a result of conducting research and with the aid of some excellent advice from this site my brother was able to secure a new treatment programme which I wrote about when asking the question regarding the big guns. I posed this question just as he was starting his new regimen of treatment. Most advice I got back on this suggested we should go for quality v quantity of life. My brother however was determined to try further chemo. He took his first round of this around two weeks ago and it hit him pretty badly. He could not eat food, became dehydrated and his blood count fell to around 7
    (I am told that this should be 11 by some and 14 by others)he was extremely breathless, was jaundiced and could barely walk. We got him admitted to hospital where he stayed for several days. He was given 3 units of blood in total and fed 1500 calories per day intravenously through arm veins per day for 2 days. His inability to swallow was partly due to thrush in his throat for which he was given medication and also contraction of the esophagus which the consultant managed to widen a little.This allowed him to improve his eating slightly in the short term and he was released from hospital. He felt much better and hoped to build up his eating regimen, take short walks for exercise and get out and about a little. The full benefit of this has not lasted, he is low on energy again, is trying to eat but has a psychological issue which stops him doing so and his blood count may be low(he has been tested today and we await results) he might need another short stay in hospital.He discussed a j tube with his consultant today but the consultant would rather try to overcome any psychological barrier there may be first on the basis that the j tube could be a 20 hr feeding programme which would further reduce quality of life. We are about a week and a half away from when he would be due his next dose of chemo and is still of a mind to have this. His opinion is that prior to the new phase of treatment it was the cancer, not the chemo which was doing the damage. Many others on this site are much better qualified than me to offer you sound advice. As you can see from the above my brother is not on an easy journey but he does have a strategy he is struck on pursuing at this point. We talk openly about the pros and cons but he and the good lord are in the driving seat. I know that had he been lucky enough to be operable and if he was offered chemo beyond that, he would take it if he felt it would help him. I would be hopeful that William and others could give you more qualified advice about chemo after surgery. No two cases are the same and the pain/side effects v benefit will be different in each case. Hope this helps
    E Courtney
  • ecourtney said:

    Chemo and you
    Hi Mark,
    Sorry to hear about your son . I'm happy to answer your question as a layman if it helps. I honestly wish that there was a straightforward answer to this question. My brothers case is further advanced at stage 4 than your son and my brothers cancer was too far advanced so chemo was the only option available. The 6 initial rounds at 3 weekly intervals were put forward at the consultants behest and I have to say that although this caused us some concern and he suffered the side effects I mentioned in my earlier postings his big concern at the end of this was that his consultant had adopted a wait and see approach which worried us greatly. As a result of conducting research and with the aid of some excellent advice from this site my brother was able to secure a new treatment programme which I wrote about when asking the question regarding the big guns. I posed this question just as he was starting his new regimen of treatment. Most advice I got back on this suggested we should go for quality v quantity of life. My brother however was determined to try further chemo. He took his first round of this around two weeks ago and it hit him pretty badly. He could not eat food, became dehydrated and his blood count fell to around 7
    (I am told that this should be 11 by some and 14 by others)he was extremely breathless, was jaundiced and could barely walk. We got him admitted to hospital where he stayed for several days. He was given 3 units of blood in total and fed 1500 calories per day intravenously through arm veins per day for 2 days. His inability to swallow was partly due to thrush in his throat for which he was given medication and also contraction of the esophagus which the consultant managed to widen a little.This allowed him to improve his eating slightly in the short term and he was released from hospital. He felt much better and hoped to build up his eating regimen, take short walks for exercise and get out and about a little. The full benefit of this has not lasted, he is low on energy again, is trying to eat but has a psychological issue which stops him doing so and his blood count may be low(he has been tested today and we await results) he might need another short stay in hospital.He discussed a j tube with his consultant today but the consultant would rather try to overcome any psychological barrier there may be first on the basis that the j tube could be a 20 hr feeding programme which would further reduce quality of life. We are about a week and a half away from when he would be due his next dose of chemo and is still of a mind to have this. His opinion is that prior to the new phase of treatment it was the cancer, not the chemo which was doing the damage. Many others on this site are much better qualified than me to offer you sound advice. As you can see from the above my brother is not on an easy journey but he does have a strategy he is struck on pursuing at this point. We talk openly about the pros and cons but he and the good lord are in the driving seat. I know that had he been lucky enough to be operable and if he was offered chemo beyond that, he would take it if he felt it would help him. I would be hopeful that William and others could give you more qualified advice about chemo after surgery. No two cases are the same and the pain/side effects v benefit will be different in each case. Hope this helps
    E Courtney

    This comment has been removed by the Moderator
  • linda1120
    linda1120 Member Posts: 389

    chemo and you
    Hello,

    My son, 41 iwht two young daughter, was diagnosed in December with EC and has had surgery and has just completed his second round of chemo. He was diagnosed T3N1Mo. He is contemplating discontinuing chemo after three rounds. His thinking is that three is enough to do the job and will allow him to get back to his anti-cancer diet more quickly without doing too much damage to other organs. Do you know why the Docs recommend 6 rounds? One thread said that she got sick and actually discontinued chemo after two rounds and has been cancer free ever since. She quit because she got so ill from the chemo and he Dr. at the hospital said that if her were her Dr. he would stop at three because the next three are more a safety net. Any thoughts?

    Thanks,
    Mark

    chemo
    My husband was T3N1MO and was given two rounds of chemo. Cisplatin and 5fu fanny pack. He is cancer free and was cancer free at the time of his MIE in January. The chemo and radiation did it's job and mid April he had his three month catscan and was cancer free. Just our experience, hope it helps.

    Linda
  • ecourtney
    ecourtney Member Posts: 39
    unknown said:

    This comment has been removed by the Moderator

    Where to now?(The Big Cannons)
    Hi William,
    Thanks for your very sympathetic reply and your very welcome additional information. It seems that the choice regarding the option of going forward with the big cannons has now been taken out of our hands. Just after your reply we met our consultant and we had discussed nutrition options and the j tube with him.My brothers albumin level was low and the consultant suggested that this could be due to either poor nutrition or liver/kidney issues. He felt that it was likely to be the latter and since a scan was due today we delayed a decision on this until we saw the results of the scan. (in any event the consultant appears to know little more about the latest developments in the j tube than we do)
    In the intervening week, my brothers condition has worsened and today he was too weak to walk into the hospital. His scans showed that the tumour size has increased. It has spread into the liver and pancreas and has moved up the esophageal tube.It has also spread around his back and the may be some node evidence near his arm pit. Following this news, our consultant took the view that neither conventional feeding nor entereal feeding would be beneficial.His view is that any food will only feed the cancer and my brothers body will derive no benefit. He might "feel better mentally" by eating but that would be all. Hydration was important. I hope against hope that someone can tell me that we should still push for the j tube and I would welcome any advice from members on this. Other information on my brothers condition is that his blood count is 8.8 and his platelet level was about one sixth of what it should be. His blood pressure and oxygen levels are normal but he is always breathless.As I write he is receiving 4 units of blood and platelets.
    Regards, E Courtney
  • ecourtney said:

    Where to now?(The Big Cannons)
    Hi William,
    Thanks for your very sympathetic reply and your very welcome additional information. It seems that the choice regarding the option of going forward with the big cannons has now been taken out of our hands. Just after your reply we met our consultant and we had discussed nutrition options and the j tube with him.My brothers albumin level was low and the consultant suggested that this could be due to either poor nutrition or liver/kidney issues. He felt that it was likely to be the latter and since a scan was due today we delayed a decision on this until we saw the results of the scan. (in any event the consultant appears to know little more about the latest developments in the j tube than we do)
    In the intervening week, my brothers condition has worsened and today he was too weak to walk into the hospital. His scans showed that the tumour size has increased. It has spread into the liver and pancreas and has moved up the esophageal tube.It has also spread around his back and the may be some node evidence near his arm pit. Following this news, our consultant took the view that neither conventional feeding nor entereal feeding would be beneficial.His view is that any food will only feed the cancer and my brothers body will derive no benefit. He might "feel better mentally" by eating but that would be all. Hydration was important. I hope against hope that someone can tell me that we should still push for the j tube and I would welcome any advice from members on this. Other information on my brothers condition is that his blood count is 8.8 and his platelet level was about one sixth of what it should be. His blood pressure and oxygen levels are normal but he is always breathless.As I write he is receiving 4 units of blood and platelets.
    Regards, E Courtney

    This comment has been removed by the Moderator
  • ecourtney
    ecourtney Member Posts: 39
    unknown said:

    This comment has been removed by the Moderator

    too late for tube?
    Hi William,
    Thanks as always for your very detailed and passionate reply-had some of our medics displayed the same passion we might not have found ourselves here. Firstly thanks for enquiring re my brothers grandchild.. Yes he is now a proud grandad!! Each time I write however it is to report a further decline. We have been advised that we are now at the end of life stage. Kidney and liver is not functioning normally and platelets have not increased despite platelet infusion.I am told that j tube would not add any benefit since other organs around jujenum are not functioning properly. Consultants have suggesed that we should now focus on a diet mainly of liquids and my brother should eat anything he can whilst recognbising that this will be minimal. In these circumstances do you consider that j tube would add to or prolong quality of life??
    Kind regards
    E Courtney
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    ecourtney said:

    too late for tube?
    Hi William,
    Thanks as always for your very detailed and passionate reply-had some of our medics displayed the same passion we might not have found ourselves here. Firstly thanks for enquiring re my brothers grandchild.. Yes he is now a proud grandad!! Each time I write however it is to report a further decline. We have been advised that we are now at the end of life stage. Kidney and liver is not functioning normally and platelets have not increased despite platelet infusion.I am told that j tube would not add any benefit since other organs around jujenum are not functioning properly. Consultants have suggesed that we should now focus on a diet mainly of liquids and my brother should eat anything he can whilst recognbising that this will be minimal. In these circumstances do you consider that j tube would add to or prolong quality of life??
    Kind regards
    E Courtney

    Thinking of you
    Hello ecourtney and your brother
    Yes...I believe it is too late. That is just my opinion. Go with your gut feelings. Remember when I told you...You know when enough is enough? His body is shutting down. Please look at his quality of life, and ask yourselves..does he have one? Is this any way to live? You both know the answer. I am speaking from my own experience with my dad. He had 3 horrible months at his end. If I knew then what I know now...I would have never even thought to tell him to continue with the chemo. I pray for both of you to come to the decision that is good for you. Give your brother your blessing. Give him the peace he needs to have. We will be here for you. Keep us posted. Hugs.
    Tina in Va
  • ecourtney
    ecourtney Member Posts: 39

    Thinking of you
    Hello ecourtney and your brother
    Yes...I believe it is too late. That is just my opinion. Go with your gut feelings. Remember when I told you...You know when enough is enough? His body is shutting down. Please look at his quality of life, and ask yourselves..does he have one? Is this any way to live? You both know the answer. I am speaking from my own experience with my dad. He had 3 horrible months at his end. If I knew then what I know now...I would have never even thought to tell him to continue with the chemo. I pray for both of you to come to the decision that is good for you. Give your brother your blessing. Give him the peace he needs to have. We will be here for you. Keep us posted. Hugs.
    Tina in Va

    thinking of you
    Hi Tina
    I fear we have reached the point where every lucid day is a blessing .In Scotland we have a saying" it takes one to know one"I'm sure that it gives neither of us any comfort to recognise that we,along with Sherri and too many others have shared many of the same unfortunate experiences.I thank you all for your selfless support.We have not yet surrendered but know that fate is not on our side. Please continue to support fellow travellers. Even one more day gained is so highly valued.

    God bless
    E Courtney
  • Billcan
    Billcan Member Posts: 2
    unknown said:

    This comment has been removed by the Moderator

    Your letter
    Bill:
    Your letters are informative and much appreciated.
    Am still having trouble navigating the site and would like to connect with others
    who had the esophagectomy.

    Suggestions appreciated.

    Thanks,

    Bill McIver
    billfin2001@yahoo.com
  • alexander22
    alexander22 Member Posts: 8
    myself
    im geting endoscope monday ct scan teusday dont no what to expect only went into hospital last satarday fealing a little breathless my xray showed nipple size shadow heart normal all rest of lungs clear but this week started having reflux feels like im fool but baged up eating well when hungry sycling 5 miles per day but very tense and wary i no somthing is not right inside as i ni my body now getting a bit vertigo in the day hope its operable not 4