Newly diagnosed stage 4

Hello,  I'm from the UK and my husband has recently been diagnosed as Stage 4 with a spread to the peritoneal lining.  We are both devastated as our world has fallen apart.  I've been reading the posts on here since his initial endoscopy as initially it looked so promising.  He was diagnosed with Barrett's approximately 16 months ago and had an endoscopy which was clear with a review due in three years.  Throughout last year he had some indigestion but nothing major and was prescribed lonsaprozole which did help.  Around November the indigestion got worse and he made several visits to the GP who prescribed indigestion mixture but by this time he was also coughing up white mucus and complaining of pain behind his breast bone.  I so wish I knew then what I know now as I would have insisted on a scope.  We then went to Florida for Christmas (we are regular visitors) where my husband really suffered two bad bouts of indigestion and was admitted to the hospital in Celebration.  An emergency endoscopy/biopsy was performed and the surgeon did say that a malignancy couldn't be ruled out but he suspected achalasia.  On return to the UK the process began with the British doctors and a tumour was discovered just about the junction with the stomach.  The CAT and PET scan showed no spread and the surgeon was very hopeful that he would be a candidate for the Ivor Lewis.  During the EUS they were unable to pass the scope through the stricture but were still hopeful of the operation and a laporoscopy was scheduled for last week.  The surgeon stated that he was 95% certain that there was no spread and even after the laporoscopy stated that he was still confident. 

We went for the results on Wednesday and were told that unfortunately there has been a spread to the peritoneal lining and that without chemo my husband has only six months to live and if he decides to have chemo then he could live between 12-18 months.  We are still in absolute shock as he has displayed no outward signs of illness, is still managing to eat blended food and has put back all of the initial weight that he lost.  Although he is 71 he is extremely healthy, goes to the gym three times a week - at his pre op assessment he was told that he has the heart and blood pressure of a young man!

We have a meeting with the oncologist on Thursday and I've tried to read as much as possible about the treatment but everywhere I look seems to paint the same dismal picture.  Of course I'm a realist but at the same time I want to explore every avenue possible as my husband is my world.  We have two centres of world excellence in the UK who offer the HIPIC treatment but not for oesophagul cancer/peritoneal spread.  It's so hard at the moment for me to accept that nothing can be done.  It seems as if the hospital have simply written him off as he is now no longer a candidate for surgery.  I'm looking for any advice thank you.

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Comments

  • abrub
    abrub Member Posts: 2,174 Member
    If you're in the UK

    See about a referral to Basingstoke or the Christie, where they have lots of experience dealing with peritoneal mets  (appendix cancer is a colorectal variant that almost always has peritoneal mets. ) 

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    Mulan1960~Please see separate topic forum 4 more specifics re EC

    Dear Mulan1960 –

    Since we have quite a few patients write here who live in the UK, I have tried to put as much info from UK links as possible.  For that reason I decided to put my comments to your letter in a separate topic forum.  You can read my comments here:  https://csn.cancer.org/node/315245

    “Sorry” cannot adequately describe the way I feel when I read of another person being diagnosed with cancer, especially a Stage IV cancer.  So I hope that something that I’ve said will give you hope that palliative treatments have the potential to prolong your husband’s life much longer than 18 months.  After all, it is in God’s timetable, as to when we depart this life.  I should have been dead long ago with a diagnosis of Peritoneal Carcinomatosis/Ovarian Cancer Stage IV.  And like I say, “I’ve outlived my 5-year handicap placard.”  I’m going to glue a few sequins on it and wear it to church tomorrow.  It’s something to praise the Lord for.  Even though we are BOTH REALISTS, I’m hoping that something I’ve been able to say will lift your spirits and give you some hope of a longer life with your dear husband.  I know you will not leave a stone unturned to get the very best help you can for your husband. 

    Love & prayers,

    Loretta Marshall

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Hello Mulan

    Hello Mulan,

    Please excuse my tardiness in replying.  Our power went out Friday and we just got electricity (and heat and hot water) back today, Monday.  The Northeast of the U.S. got hit hard last week.  Unfortunately, your story sounds too familiar to me.  Doctors minimized what was wrong until it was very late in the game.  The two things I'd like to suggest to you are that you go to a first quality cancer center.  That is the single biggest thing you can do, that you are in control of.  It sounds like you are doing that from what you've said, but I can never stress that point enough.  The second thing is that you have to make sure your husband is tested for his HER2 status.  I was diagnosed with a stage IV recurrence in a lung and given 7-8 months to live.  My HER2 status was positive.  That means that I had a particularly aggressive form of EC (bad), but that there was a drug that has proven to be effective against even stage IV (good).  That was in 2011 and I'm still here and testing clean for cancer.  I was slated to die in June 2012 and I found my miraculous path out.  I hope you guys find a path out from under a grim prognosis also.  Never quit.  Never.

    Best Wishes,

    Ed

  • Mulan1960
    Mulan1960 Member Posts: 28
    Thank you for your reply.  I

    Thank you for your reply.  I've pestered and pestered until I finally got to speak to one of the medical staff from the hospital where my husband had the washings (he's now been sent to a different hospital for his oncology appointment on Thursday)  He explained that the team were shocked to find a spread and that the spread was actually in the peritoneal fluid.  There were no seedlings, nothing in the lining and no spread to any other organs.  The oncology appointment is at our local hospital which does have a chemotherapy unit however I have spent the last four days reading vast amounts of material so that I am in a good position when we meet the oncologist.  I have a list of questions, definitely about HER2 and I will definitely not be satisfied until I'm certain that my husband is receiving the best care.  We are about 45 minutes from one of the leading cancer hospitals in the UK, the Christie and I'll be pushing for a referral.  I've already read a lot of your posts and your story is an inspiration.  We definitely won't quit.

  • staceycorry
    staceycorry Member Posts: 14
    Hi Mulan

     

    Hi Mulan,   I agree with Ed, never give up and find a quality facility.  My father was diagnosed in July 2017 with stage 4 also.  The oncologist said it could possibly be stage 3 based on a new scale they have.  But either way, a dismal outlook on survival.  We went to MD Anderson and lived in Houston TX  for 6 weeks (of course right when Hurricane Harvey decided to land).  My father went through aggressive treatment with 2 types of chemo and daily radiation.   The treatment was tough and he stopped eating.  Once a feeding tube was placed, we were able to get through the treatment and he is now cancer free, at least for now.  Sending prayers to both of you. 

     

  • Mulan1960
    Mulan1960 Member Posts: 28
    We met with the oncologist

    We met with the oncologist today and were fortunate that he is an oncologist from one of the best cancer hospitals in the north of England.  He was so thorough.  I was prepared with a series of questions and a page of notes however I barely needed to ask anything as he'd covered all of my queries during his explanation.  He explained that they will begin with six three week cycles of EOX chemotherapy and will also test for HER2.  They are hopeful that the cancer will stabalise in order for a further six three week cycles.  We have more meetings next week to discuss other parts of the treatment but my husband is determined to see this treatment through.  He did state again that so far there's no spread to any other organs and as far as they are aware the spread is contained in the peritonial cavity.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    Mulan~Best news U could hope 4~a caring-gifted-experienced ONC !

    Hello It’s Loretta again –

    This is the best news you could have and the reason to be the most optimistic.  LaughingIt also makes us here online feel that our input has confirmed your own research.  It’s also good that the oncologist was thorough and covered most everything you had in your notes.  You are one of the few who have done diligent research PRIOR to going in for the consultation.  So congrats on being “one smart lady.”  We hope that your husband is receptive to these treatments.  We’re also glad that the cancer is contained in the peritoneal cavity.  Believe me, if you had been here as long as we have, you would know that there are many other Stage IVs with much less hope because of the spread of their own cancer!  So thank God you are in the right place at the right time. 

    The EOX treatment is “tough” so be prepared.  So many who take the “Oxaliplatin” are at first surprised by the “Surprised factor—so be prepared for that.  Actually, there is no way for “us” to be fully prepared for how our bodies are going to respond to the chemicals that are circulating through our system, but it’s our best hope for “staying alive” with some “quality of life.”  Now I must say that during the treatment series, you and your husband may wonder if he is going to feel better.  My personal response is that I usually don’t get to the “feeling better part” until the regimen is finished.  Then I have a period in which my quality of life is such that I say, “It was rough, but I feel much better now—so all in all, it was worth the gift of extra time to be with those I love!”

    I know I speak for everyone here who reads and responds on this site, we wish you the very best!

    Loretta

    ___________________________________________________ 

    1.     http://chemocare.com/chemotherapy/acronyms/eox.aspx

    2.     http://chemocare.com/chemotherapy/drug-info/epirubicin.aspx

    3.     http://chemocare.com/chemotherapy/drug-info/oxaliplatin.aspx

    4.     http://chemocare.com/chemotherapy/drug-info/capecitabine.aspx

  • Mulan1960
    Mulan1960 Member Posts: 28
    Thank you Loretta

    Thank you Loretta.  I've just read your words to my husband and he said also to thank you.  He is remaining very positive although with a few moments when sadness overwhelms him but we have a great deal of support from other family too.  We have a meeting with our upper GI specialist nurse on Monday who wants to explain how the chemo will operate and also offer any support which could be needed.  They also want to perform a swallow test in the radiology department and then a further appointment to check the J tube.  My husband is still managing to eat as long as the food is blended to a liquid so he has put back any weight previously lost.  We have a specialist cancer centre about a mile from our home which is where the chemo will be administered therefore there will be little travel to and fro.  I'll keep you informed about his progress.

  • Mulan1960
    Mulan1960 Member Posts: 28
    I just thought I'd post an

    I just thought I'd post an update as the oncologist has moved quickly.  My husband was tested for HER2 and it's come back positive so they're starting him with herceptin together with the chemo.  This all begins on Monday.  I've just taken my husband to our local hospital to have a stent fitted as he was given a barium swallow test on Monday and the consultant was concerned at the narrowing of the oesophagus so are hoping that this will help him to maintain his weight through the chemo.  He still has the J tube and so far has only lost a couple of pounds.  He remains in good spirits and although recongises that a very tough road is ahead, wants to get started on the treatment.  Thanks for all your responses and help so far - it's meant a lot.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Mulan1960 said:

    I just thought I'd post an

    I just thought I'd post an update as the oncologist has moved quickly.  My husband was tested for HER2 and it's come back positive so they're starting him with herceptin together with the chemo.  This all begins on Monday.  I've just taken my husband to our local hospital to have a stent fitted as he was given a barium swallow test on Monday and the consultant was concerned at the narrowing of the oesophagus so are hoping that this will help him to maintain his weight through the chemo.  He still has the J tube and so far has only lost a couple of pounds.  He remains in good spirits and although recongises that a very tough road is ahead, wants to get started on the treatment.  Thanks for all your responses and help so far - it's meant a lot.

    Hello Mulan

    Hello Mulan,

    Sounds like you guys are all geared up to start the fight.  It's good that your husband has a j-tube.  That's the best way to guarantee he gets the needed nutrition and hydration.  The stent will hopefully allow him to get calories, nutrients and hydration by mouth as well.  Stents have been very helpful for some folks, but many have struggled and said they weren't worth it.  From what I've seen here, it's sort of a coin toss.  I saw you said EOX was going to be the chemo.  I had folfox my 2nd time around when I was stage IV.  Oxaliplatin is rough stuff.  Be prepared for the potential for strong side effects.  Neuropathy and cold sensitivity are the two most noticeable, but there are others as well.  The cold sensitivity is something that was described to me in advance, but that I didn't really understand until I was experiencing it first hand.  It's unique.  Finally, about herceptin.  Herceptin is fairly mild.  I've been getting it weekly for six and a half years and the side effects from it are minimal and manageable.  Herceptin has been my pathway out from under a grim prognosis (7-8 months) and I hope it is as successful for you guys as it has been for me.

    Hope this is useful information.  Best of luck with treatment,

    Ed

  • Mulan1960
    Mulan1960 Member Posts: 28
    Hi Ed and thanks for your

    Hi Ed and thanks for your reply.  The GI nurse did say that they'd keep a check on the stent and remove it if it was causing problems.  I'm trying to read as much as I can about EOX so that I can be prepared for whatever it throws at my husband.  I'm hoping that the herceptin will be successful for him.  Thanks for your good wishes.

    Cath

  • Mulan1960
    Mulan1960 Member Posts: 28
    Things haven't been too good

    Things haven't been too good unfortunately since the fitting of the stent and looking back I wish it hadn't been done.  My husband had the stent fitted two days before the start of chemo and has experienced the most horrendous wind ever since - the noise from the wind is something I've never heard before and it's also extremely painful.  He began the chemo and it started well until about four days in when he started to be violently sick - mainly bringing up bile.  He was admitted to A&E over the weekend who did all the blood tests which came back normal and said that they believed it to be a stent problem.  He was readmitted to hospital yesterday as he has lost 12 pounds in a week - he had an endoscopy this morning and the doctor said that the tumour has slightly grown at the bottom of the stent and that this is causing the problem - can this happen in a week?  They've also said that the top of the stomach is irritating the oesophagus and that the priority is to find an anti sickness medication which will work as the previous medication has proven to be futile.  They have provided him with a syringe driver and when I left the hospital this evening he was feeling a little better as the sickness had diminished although the wind was still a major problem.  He has been unable to take the chemo tablets for the last four days although the palliative nurse has visited and said that they are hopeful that they can get him back to his previous strength in the next 48 hours.

    There has been such a decline since the fitting of the stent and he has become so despondent.  He was so positive when the chemo was due to start and this has really knocked him.  

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Sorry to hear things aren't going well

    Hello Mulan,

    I'm sorry to hear that things aren't going as well as you'd hoped.  This can be a bumpy road.  I hope you guys are able to stay focused on your goal instead of getting sidetracked by other things.  I've heard here that the stent can get enmeshed with the tumor to the point where it can't be removed.  I don't know how quickly that can happen, but hopefully that's not the case for your husband.  I'm hoping that this whole thing is just a brief detour and that you guys get right back to where you were.

    Best Wishes,

    Ed

  • Mulan1960
    Mulan1960 Member Posts: 28
    edited March 2018 #15
    Better day

    Thanks Ed for your support.  Today was much better and the syringe driver seems to be doing its job.  My husband hasn't been sick and has managed to start eating again and looks much better in himself.  A different medication has been prescribed for the chronic wind which also appears to be working.  The team are hopeful that if things continue to progress then he should be able to come home tomorrow.  He then needs to build himself up again and regain his strength so that he can restart the chemo.  When we returned from the USA in late December he had lost so much weight so we feel we're back to square one but it's onwards and upwards again.  Hopefully this is just a blip and the GI team are confident that the syringe driver will only be temporary and that they've got the correct anti sickness medication.

  • Mulan1960
    Mulan1960 Member Posts: 28
    Mulan1960 said:

    Better day

    Thanks Ed for your support.  Today was much better and the syringe driver seems to be doing its job.  My husband hasn't been sick and has managed to start eating again and looks much better in himself.  A different medication has been prescribed for the chronic wind which also appears to be working.  The team are hopeful that if things continue to progress then he should be able to come home tomorrow.  He then needs to build himself up again and regain his strength so that he can restart the chemo.  When we returned from the USA in late December he had lost so much weight so we feel we're back to square one but it's onwards and upwards again.  Hopefully this is just a blip and the GI team are confident that the syringe driver will only be temporary and that they've got the correct anti sickness medication.

    Update

    I haven't posted for a while as it's been a very bumpy road.  My husband had his second chemo and again suffered with extreme sickness and was again hospitalised for four days.  This resulted in a loss of ten pounds and the syringe driver was used to deliver the anti sickness meds.  He also began to experience horrendous coughing up of mucous.  The doctors eventually got the anti sickness meds right and he now takes them orally and has a patch for the mucous which has solved the issue.  He again missed five days of his chemo tablets.  Just before he was meant to be starting his third chemo he began to have bouts of breathlessness to the extent where he now has to walk slowly and struggles to walk uphill.  The chemo nurses decided that he was unfit for the infusions as his bloods were borderline and that he'd need a week to recover.  He's eating well at the moment and today we had an appointment with his oncologist.  The bloods are fine apart from a little dehydration but the oncologist has again suspended the chemo until he can can to the bottom of what's causing the breathlessness.  A chest x ray was taken at the appointment to rule out fluid and the onlcologist said that he can hear a slightly reduced air function in the right lung. He's scheduled a CT scan for next week in case of a blood clot - his last CT showed very tiny nodules although the oncologist thinks it's highly unlikely in the short time that these could have developed into anything sinister to cause the breathlessness.  We're both really downhearted that the chemo has again been suspended - this will be four weeks in total.  The oncologist said he wants to look at the scan to see if the chemo has had any effect - would it do so after two sessions?  Any advice would be gratefully received.

  • paul61
    paul61 Member Posts: 1,391 Member
    I have heard of benefits after 1 chemo session

    Hello Mulan,

    I am so sorry to hear the difficult time your husband is having with chemo. I have heard of some folks receiving some tumor reduction after only one cycle of chemotherapy. It is also important to remember that chemotherapy drugs stay in the body and are active for several weeks after the infusion. I had to take a break from one of my chemo drugs for a week because of significant side effects and was of course concerned about the cancer growing during the time I was not receiving chemo. My oncologist assured me the drugs were still working in my body. I think they did a scan for me after my third cycle of chemo to see if the drugs were having any effect.

    I had some issues with dizziness and shortness of breath when I became dehydrated during my chemo treatment. I found that if I went in for IV hydration two days after my chemo infusions I felt much better and the dizziness and shortness of breath improved.

    I hope things improve for you both now that they have his chemo drugs and anti-nausea meds balanced.

    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 - Three Year Survivor

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Hello

    Hello Mulan,

    Sounds like you guys are having a bumpy go of it.  Hopefully, they've gotten him stabilized and ready to continue treatment.  As Paul said, chemo can have a positive impact on the cancer in a short time.  It won't be fully effective as a full course would be, but there can be improvement quickly.  I hope that's what they find for your husband.  

    I understand the frustration with breathlessness.  When I was stage IV, the 2nd time around, it was because the EC recurred in a lung.  That obviously led to breathing & coughing problems.  I also have emphysema, which makes for a double lung whammy.  It is endlessly frustrating, still, to be short of breath during/after the most mundane things.  When I was doing the folfox, it was especially brutal.  I was weak and fatigued to the point that everyone thought I was going to die, and soon.  Fortunately for me, it was just the chemo doing its job with unpleasant side effects.

    Best wishes getting back on track with successful treatment,

    Ed

  • Mulan1960
    Mulan1960 Member Posts: 28

    Hello

    Hello Mulan,

    Sounds like you guys are having a bumpy go of it.  Hopefully, they've gotten him stabilized and ready to continue treatment.  As Paul said, chemo can have a positive impact on the cancer in a short time.  It won't be fully effective as a full course would be, but there can be improvement quickly.  I hope that's what they find for your husband.  

    I understand the frustration with breathlessness.  When I was stage IV, the 2nd time around, it was because the EC recurred in a lung.  That obviously led to breathing & coughing problems.  I also have emphysema, which makes for a double lung whammy.  It is endlessly frustrating, still, to be short of breath during/after the most mundane things.  When I was doing the folfox, it was especially brutal.  I was weak and fatigued to the point that everyone thought I was going to die, and soon.  Fortunately for me, it was just the chemo doing its job with unpleasant side effects.

    Best wishes getting back on track with successful treatment,

    Ed

    Thanks

    Thanks Paul and Ed for your support.  It is frustrating but we're hanging in there and trying to be as positive as possible.  My husband is using this break period to try to gain some of the weight loss back and hopefully regain a little of his previous fitness.  He does have slight angina and COPD so we're hoping that they're the cause of the breathlessness rather than mets to the lungs.

  • Mulan1960
    Mulan1960 Member Posts: 28
    Update

    We saw the oncologist today for the results of the cat scan.  His exact words were 'the chemo has done its job' and he said that he was really pleased with what's happened.  He said that there's been a reduction in the tumour, there's no evidence of mets in the lungs and there's also been a reduction in the lymph nodes.  He also said that there's no reason showing on the scan for the breathlessness so he thinks that it's an effect of the chemo.  The breathlessness is actually getting a little better.  My husband is continuing to put on weight and has stopped coughing up any mucous.

    The oncologist only wants to see him in eight weeks and then to rescan.  He wants him to continue to get stronger and will again review with a view to more chemo.  He feels that if chemo now continues then it could have a negative effect on the breathlessness. 

    I asked about continuing herceptin but he doesn't want to do this at the moment.  I'm also concerned about an eight week break but we're at one of the leading cancer centres in the UK and so far the oncologist has been fabulous.  This is the first positive news that we've had since my husband was given the news that his tumour was inoperable.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Mulan1960 said:

    Update

    We saw the oncologist today for the results of the cat scan.  His exact words were 'the chemo has done its job' and he said that he was really pleased with what's happened.  He said that there's been a reduction in the tumour, there's no evidence of mets in the lungs and there's also been a reduction in the lymph nodes.  He also said that there's no reason showing on the scan for the breathlessness so he thinks that it's an effect of the chemo.  The breathlessness is actually getting a little better.  My husband is continuing to put on weight and has stopped coughing up any mucous.

    The oncologist only wants to see him in eight weeks and then to rescan.  He wants him to continue to get stronger and will again review with a view to more chemo.  He feels that if chemo now continues then it could have a negative effect on the breathlessness. 

    I asked about continuing herceptin but he doesn't want to do this at the moment.  I'm also concerned about an eight week break but we're at one of the leading cancer centres in the UK and so far the oncologist has been fabulous.  This is the first positive news that we've had since my husband was given the news that his tumour was inoperable.

    Good News!

    Hello Mulan,

    Sounds like you guys have finally gotten some good news.  That's great.  This fight against EC can certainly be a bumpy road, as you have discovered.  The most important thing is the end result, though, not the journey.  I hope you guys are on your way to getting the end result you desire.  Hopefully in a few weeks you can start right back on the path to beating this.

    Hoping for a Good Scan in Eight Weeks,

    Ed