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Newly diagnosed stage 4

Mulan1960
Posts: 28
Joined: Mar 2018

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.

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

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's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

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's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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
Posts: 28
Joined: Mar 2018

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's picture
staceycorry
Posts: 14
Joined: Dec 2017

 

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
Posts: 28
Joined: Mar 2018

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's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

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
Posts: 28
Joined: Mar 2018

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
Posts: 28
Joined: Mar 2018

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's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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
Posts: 28
Joined: Mar 2018

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
Posts: 28
Joined: Mar 2018

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's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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
Posts: 28
Joined: Mar 2018

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
Posts: 28
Joined: Mar 2018

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's picture
paul61
Posts: 1349
Joined: Apr 2010

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's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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
Posts: 28
Joined: Mar 2018

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
Posts: 28
Joined: Mar 2018

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's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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

Mulan1960
Posts: 28
Joined: Mar 2018

Thanks Ed

It certainly is a bumpy road.  It's exactly five months since we were on holiday in Orlando and all of this started and my husband thought his indigestion (which he'd been constantly treated for by his general practioner) had got worse.  Little did we know then what was to happen but we're getting through it day by day and will keep going.

Mulan1960
Posts: 28
Joined: Mar 2018

As my husband is now getting stronger, do you think it would have been preferable if the chemo had been continued or at least the herceptin?  I'm just concerned that an eight week gap could set him back again.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Mulan,

The doctors may have continued the chemo if they though your husband could have withstood it (his breathing).  Sometimes folks need a break from chemo to regain their strength.  Sometimes doctors dial down the dose if a patient is struggling.  Herceptin is fairly mild.  He might have been able to continue with that.  Perhaps there were cardiac issues the docs were concerned about.  Perhaps they thought the herceptin wouldn't be of benefit without the chemo.  Right now I guess you guys have to focus on rest and regenerating strength.

Glad that you guys are doing well,

Ed

Mulan1960
Posts: 28
Joined: Mar 2018

Thanks Ed,

I'm hoping that my husband will do exactly that and regain his strength over the next few weeks.  Some days he seems to lose a little of his appetite but he still manages to eat and the breathlessness does seem to be getting better.  We've got lovely summer weather at the moment in the UK so are hoping to get out and about over the next few days. 

Mulan1960
Posts: 28
Joined: Mar 2018

Things had been going pretty well up to this week.  My husband was due for his scan yesterday and his oncologist meeting on Thursday.  This week however he's been feeling really under the weather and his breathlessness had started to get quite bad but only when he went from sitting to standing.  Our GP diagnosed it as more stress related initially however over the last few days he took a turn for the worse.  He had a couple of episodes of vomiting dark coloured bile and actually fell to his knees with the breathlessness.  It did disappear almost immediately therefore the oncall doctor again diagnosed it as being stress related.  Yesterday was so bad that I took him to the hospital where he was admitted and his blood count has hit the floor.  He had an endoscopy this morning and they said that the tumour had been 'oozing' (their words) and the bile would have been old blood but there is no more bleeding.  They've kept him in hospital and he's currently having two bags of blood.  They said if his blood comes back up then he'll be able to come home tomorrow.

I'm obviously worried that the tumour has grown or could there be any other reason as to why it would bleed? 

Over the last couple of days he also became very agitated and when asleep I noticed that he was reaching for objects that weren't there and also speaking to non existent people.  I've told the staff at the hospital but they don't appear concerned.  He seems back to his normal self today - they seem to think he was dehydrated as he won't drink water no matter what I do and will only drink lucozade or cola.

I'm keeping my fingers crossed for a positive scan but I'll deal with whatever it throws at us.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Mulan,

You guys have certainly had a lot thrown at you.  I'm not familiar with a tumor bleeding, so I have no idea why it might do that.  It sure seems unsettling, though.  I can't believe they didn't give possible reasons in the hospital.  I don't think bleeding is associated with tumor growth.  Everyone's tumor grows, some to quite large sizes and I've never heard of any bleeding.  So to me (definitely not a doctor) it sounds like it's associated with some other reason.  

I know there must be a lot of anxiety about the scan results.  I hope you guys get the best possible news.

Best Wishes,

Ed

Mulan1960
Posts: 28
Joined: Mar 2018

He was much better today - they gave him another bag of blood and it appears to be doing its job as the breathlessness is going.  They want to keep him overnight and get reviewed by the doctors tomorrow - our NHS is wonderful but it's normally only doctors for emergencies at the weekend.  They're hoping to do the CT scan before discharge tomorrow and then review with the oncologist on Thursday.  The endoscopy has shown no more bleeding so hopefully everything will be stable.

Thanks again Ed for your support.

Mulan1960
Posts: 28
Joined: Mar 2018

After having three bags of blood and an iron infusion my husband was discharged from hospital.  The breathlessness has much improved although it's still there a little.  They've taken more bloods and want to review again early next week.  They feel that if the tumour is still bleeding a little then they're going to give some radiation to stop this.  The scan results have shown no change since May - the oncologist said this is really good news and doesn't want to see him for three months.  I've asked about continuing with herceptin but his view is that as everything is stable and the lymph nodes have shrunk, then to leave any treatment until it's needed.  The main issue for my husband at the moment is excessive mucous again - his specialist nurse is visiting on Wednesday so hopefully she'll review this.  The nursing team want to make sure that his energy levels improve either by more blood or treatment of the bleeding so hopfully the next three months should be more positive.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Dear Mulan:

It is good that you are talking to some Stage IV EC patients here in America.  Each of us have our own complications depending on our own cancer.  Recently I had an iron infusion and it helped raise my energy level considerably, although constant fatigue is my companion.  So it is at least good news that he is out of the hospital.

Our hearts ache for one another because we know the emotional turmoil it causes for both the patient and the caregiver.  While my own husband had relatively few difficulties with his neoadjuvant treatment prior to his totally successful Ivor Lewis Minimally Invasive Esophagectomy, the same has not been true for me.  Without going into detail of my now ongoing 5-yr. battle with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, I relate both to my days as caregiver to my husband, and also to my own Stage IV patient.  The heartache and uncertainty that follows a diagnosis of cancer can only be understood by others who are also in the same predicament.

Specifically, I just want to address the fact that the doctors are NOT going to continue with Herceptin at this time.   The very benefit of Herceptin is to keep the cancer growth in check, so I’m disappointed and wondering exactly what their reasoning should be.  I am certain “ED” (DeathorGlory) won’t like it when he reads this because he attributes his survival so far with the “continued” application of HERCEPTIN. 

Now as one who keeps a good many medical reports in my WORD file for research purposes, I find the one that I’ve listed below as a possible reason for the British doctor’s choice to not use Herceptin right now.  It is no longer in print but very revealing.  I don’t want to add “insult to injury” but “National Health Care” seems to play into British doctors decisions as to when certain meds should be used.  Perhaps their hands are “tied”, but I’m glad that at least for the present, we do not have our health care determined partly by cost effectiveness and the ultimate prognosis of the patient being treated.  Am I to be discarded because I am 79 and be denied treatment in order to save money for a younger crowd?  Do I have nothing left to contribute to society that is worth the medical expenditures?  Am I ready to be discarded as “out of date and no longer useful?”  Seems as long as I am paying the insurance premiums and feel that the medical treatment I am receiving is resulting in “quality of life”, medical options should be available to me, and I should make the final decision about when “enough is enough.”  And there are days when I get plain “tired of being tired”, but at this point quality of life has been such that I am willing to withstand the harsh side effects in the hope that I will be able to enjoy my family and friends here.  

My family and I have had the all-important discussions about my end-of-life care. I have discussed it with my oncologist as well, and we are all on the same page.  I do not wish to be kept alive by artificial means when it is determined that treatments are no longer beneficial.  That relieves everyone of having to make the decision that no one wants to make.  No one in my family should feel pressured to continue treatments when there is no hope of recovery.  But here in America, there certainly is a contentious debate over “when enough is enough.”  I say all that to say this.  It seems that the British “experts” have expressed their opinion on who will receive Herceptin and for how long!  That is borne out by the article I have referenced below.  It is no longer in print, but I had saved it from the time I first read it.  And here is part of a similar discussion here in the states. 

*https://www.youtube.com/watch?v=g_0o_O1Bbwo

Bottom line for me would be to insist that Herceptin be continued since it has been shown to be so effective with Stage IV HER2positive patients both in Breast & Esophageal Cancer diagnoses.

Thank you for keeping us informed.  It’s always good to talk with other cancer patients who have similar diagnoses.  We also know it “hurts” to even sit down and write us.  Sometimes the teardrops can keep us from seeing the keyboard.  Cry May God continue to bless you with the strength and stamina it takes to carry on.  And may those British physicians not spare any expense to give your husband the very best treatment

Love & prayers,

Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) currently undergoing treatments.  And also the wife of William Marshall, EC Stage III (T3N1M0) Survivor since May 17, 2003.

_________________________________________________ 

[Mulan - My note:  Perhaps this article written back in 2010 and no longer available after November 11, 2010 might shed some light on why the British doctors do not see the value of Herceptin at this time.  Because of what I have highlighted in bold and underlined, is one reason I am NOT in favor of nationalized health care here in America.]

“Drug Appears to Prolong Survival in Stomach Cancer Patients

But experts question whether high cost of treatment can be justified

 URL of this page:

 1.      http://www.nlm.nih.gov/medlineplus/news/fullstory_102390.html

(*this news item will not be available after 11/18/2010)

By Robert Preidt - Friday, August 20, 2010

 THURSDAY, Aug. 19 (HealthDay News) -- Use of the drug trastuzumab in addition to chemotherapy can extend stomach cancer patients' survival by nearly three months, a new study has found.

However, an editorial accompanying the study questions whether the treatment is cost-effective. The study and comment were both published in the Aug. 19 online edition of The Lancet.

The ToGA study, which included 584 patients at 122 centers in 24 countries with HER2-positive advanced gastric cancer, found that the addition of trastuzumab to standard cisplatin/fluoropyrimidine chemotherapy resulted in a median survival of 13.8 months, compared with 11.1 months for patients who received chemotherapy alone -- a 26 percent difference.

The findings of the phase 3 clinical trial suggest that using trastuzumab with chemotherapy should be considered a new standard option for patients with this type of stomach cancer, said Yung-Jue Bang, of Seoul National University College of Medicine in South Korea, and colleagues.

But an accompanying editorial by two U.K. experts questions the cost-effectiveness of the treatment.

"Patients in the ToGA study were treated with trastuzumab every three weeks until disease progression. The median time to progression was 6.7 months," wrote Alastair J. Munro and Dr. Paddy G. Niblock, of the department of surgery and molecular oncology at Ninewells Hospital and Medical School, University of Dundee.

"When we use the cost estimates of trastuzumab therapy calculated by the U.K.'s National Institute for Health and Clinical Excellence (NICE), this equals an average cost of [13,857 British pounds, or US $21,640] per patient.

Cost per life-year gained will therefore be around [55,000 British pounds, or US $85,893]," Munro and Niblock continued.

"In the 24 countries that contributed to the study, yearly health expenditure per citizen varies from $40 to $5,500 (2007 U.S. dollars), which reiterates the important moral question -- what is the justification for introducing a treatment that might enable one individual to live a few months longer but, which will consume for each person treated, the total yearly health expenditure for scores of their fellow citizens?" the editorialists wrote.

SOURCE: The Lancet, news release, Aug. 19, 2010 HealthDay…”

______________________________________________________ 

2.     https://www.nhs.uk/conditions/herceptin/

 3.     https://www.nhs.uk/conditions/oesophageal-cancer/

 4.     https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/trastuzumab

“Trastuzumab (Herceptin)

Trastuzumab is a targeted cancer drug and is also known by its brand name, Herceptin.

It is a treatment for cancers that have large amounts of a protein called human epidermal growth factor receptor 2 (HER2), such as:

  • early breast cancer
  • advanced breast cancer
  • advanced stomach cancer

How it works

Some breast and stomach cancers have large amounts of human epidermal growth factor receptor 2 (HER2). They are called HER2 positive cancers. HER2 makes the cancer cells grow and divide.

Trastuzumab is a type of targeted cancer drug called a monoclonal antibody. It works by attaching to HER2 so it stops the cancer cells from growing and dividing…”

_____________________________________________________ 

[My note: Herceptin was approved for Esophageal Cancer patients back in 2010 both here and in the U.K.  As we know at first it was thought that only Breast Cancer patients were presenting with the over-expressive oncogene that caused the cancer to multiply more rapidly.  Then it was also discovered that Esophageal Cancer patients were presenting with the same over-active gene and thankfully, the FDA approved it for EC patients in the states. It was also approved in the UK back in 2010.]

5.     https://www.roche.com/investors/updates/inv-update-2010-01-28.htm 

6.     https://www.roche.com/investors/updates/inv-update-2010-10-21.htm

_____________________________________________ 

Roche

7.     https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-018-0989-8

Generation of HER2-specific antibody immunity during trastuzumab adjuvant therapy associates with reduced relapse in resected HER2 breast cancer

__________________________________________________ 

[My note: A marked improvement with Herceptin]

8.      https://doi.org/10.1186/s13058-018-0989-8 - ©  The Author(s). 2018

Received: 7 December 2017 - Accepted: 15 May 2018 - Published: 14 June 2018

Abstract - Background

Resected HER2 breast cancer patients treated with adjuvant trastuzumab and chemotherapy have superior survival compared to patients treated with chemotherapy alone. We previously showed that trastuzumab and chemotherapy induce HER2-specific antibodies which correlate with improved survival in HER2 metastatic breast cancer patients. It remains unclear whether the generation of immunity required trastuzumab and whether endogenous antibody immunity is associated with improved disease-free survival in the adjuvant setting. In this study, we addressed this question by analyzing serum anti-HER2 antibodies from a subset of patients enrolled in the NCCTG trial N9831, which includes an arm (Arm A) in which trastuzumab was not used. Arms B and C received trastuzumab sequentially or concurrently to chemotherapy, respectively…

Results

Prior to therapy, across all three arms, N9831 patients had similar mean anti-HER2 IgG levels.

Following treatment, the mean levels of antibodies increased in the trastuzumab arms but not the chemotherapy-only arm.

 The proportion of patients who demonstrated antibodies increased by 4% in Arm A and by 43% in the Arms B and C combined (p = 0.003). Cox modeling demonstrated that larger increases in antibodies were associated with improved disease-free survival in all patients (HR = 0.23; p = 0.04).

Conclusions

These results show that the increased endogenous antibody immunity observed in adjuvant patients treated with combination trastuzumab and chemotherapy is clinically significant, in view of its correlation with improved disease-free survival. The findings may have important implications for predicting treatment outcomes in patients treated with trastuzumab in the adjuvant setting…”

_____________________End of references___________________ 

Mulan1960
Posts: 28
Joined: Mar 2018

Thank you Loretta for your reply.  I have read so much about herceptin and realised its benefits.  I did also wonder whether the cost of the drug may be a factor but I have great faith in the oncologist who has been nothing but exceptional since the start of the diagnosis and told us that nothing would be spared in the treatment of my husband.  I am a staunch supporter of our health service as my husband has received every treatment without question.  My gut feeling is that maybe herceptin is being withdrawn for the moment as my husband has slight angina and there could be a worry of damage to the heart?  I'll discuss this further with the oncologist this week.  Thank you again for all the great information you have provided and I'll be sure to mention this in my meeting with the oncologist.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Mulan,

Sounds like you guys are doing as well as possible.  Good for you.  Excellent that the breathing has improved.  I know first hand that that is a big thing.  I don't know about the bleeding, though.  My ignorance means nothing though, just that I don't know.  I hope the radiation is able to remedy that. 

Herceptin is something that can be given even in the absence of actual cancer.  I've been receiving it weekly since 2011 as a preventative measure.  I was stage IV with a 7-8 month life expectancy.  I'm still here to say that herceptin can be effective against even stage IV.  I do know that heart issues are a thing with herceptin, though.  I get an echocardiogram every three months to make sure my heart can still withstand it.  I just hope your docs aren't bailing for lesser reasons.

Best Wishes,

Ed

Mulan1960
Posts: 28
Joined: Mar 2018

Thanks for replying Ed.  I've got a meeting with one of the team on Wednesday so the question of herceptin is top of my list.  If I don't get a satisfactory answer then I'll get a second opinion.  We're at one of the leading cancer centres in the UK which is just outside Liverpool and there's another one, the Christie about 20 miles away from us so easy to travel.  Thanks to this board I know the questions to ask.

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hi Mulan,

I drive near 20 miles to my cancer center.  There is quite literally a red light every block for 18 miles.  I drive directly past the front doors of Abington, Einstein, Temple, and Hahneman.  I drive within one block of CCTA, and within a few minutes of Fox Chase Cancer Center.  I go to the place that works for me.  I do that every week, plus more.  I do what I think is best for me (and I'm still alive from stage III and stage IV EC).  You just keep on doing what's right for you guys.

Keep on keepin' on,

Ed

Mulan1960
Posts: 28
Joined: Mar 2018

As the title says - our specialist nurse came out to visit on Thursday and she's sorted out as best she can all of my husband's symptoms.  She's arranged a nebuliser to help with additional mucous, she contacted the upper GI team who have now arranged an appointment with the radiotheraphy team for next week to sort out the bleeding (which has almost stopped), she arranged more blood tests and those have come back fine - she couldn't have been more helpful.  I then contacted the oncologist who has actually gone on annual leave so spoke to the specialist nurse and asked about the stopping of herceptin.  Her reply was that it isn't that effective when used alone with stomach cancers unlike with breast cancers therefore it isn't often prescribed.  I've looked at the guidelines for the UK and it does seem to be prescribed mainly together with chemo drugs however I'm sure that there are people in the UK who have been prescribed herceptin as a stand alone drug.  As we have a meeting with the radiotheraphy consulant this week, this will be my number one question.  Up to now my husband is well, he's eating, putting on weight however is still very tired with a lack of energy.

Mulan1960
Posts: 28
Joined: Mar 2018

I haven't posted for a while as things have been really hectic.  My husband was due to have radiotherapy as his tumour was oozing blood and this was felt to be causing his low blood count.  However he became very unwell and was admitted to the emergency care department and given a CT scan.  It was discovered that he had a severe lung infection and an abscess on his lower oesophagus which had also led to a small tear which was causing a leak into the abdomen.  The hospital was extremely worried about him and he was placed on IV antibiotics for a week and nil by mouth with a hope that the tear would heal. 

Fortunately the infection completely cleared and the consultant was delighted with his progress.  The CT scan also showed that the tumour is again stable so he has been home for two weeks.  They are amazed that he is so resilient.  We have had specialist nurses visited every two days and the palliative consultant even made a visit on Thursday!  At the moment my husband has a problem with excessive mucous however he has been given new medication which does seem to be working and he is due for an iron infusion in the coming week as his blood tests have shown some irregularities.  The medical staff are hopeful that he should be feeling 100% better in the coming week and up and about and able to go about his business again.  The oncologist is delighted with the latest scan so at the moment we're feeling really positive.

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

Hello Mulan1960,

It is good to hear that your husband is feeling better and the antibiotics have done their job. Cancer treatment and survival can certainly be filled with lots of ups and downs. Sometimes the down times can be very depressing but if we just focus on taking things one day at a time, and try to maintain a positive outlook, the situation seems to turn around eventually.

I am hoping you are now over the difficult time and your husband will be back to recovery again.

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
Eight Year Survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Mulan1960
Posts: 28
Joined: Mar 2018

My husband died last Sunday.  After feeling so positive, he deteriorated rapidly and was admitted to our local hospice for symptom control and spent two weeks under their care. He had started to vomit blood and it was obvious that little could be done as he was really struggling.  We brought him home and he spent four nights with us before he passed away peacefully.  We are devastated but can take comfort that he didn't have any pain.  Thank you so much for those of you who replied to my posts and offered help and support.  I hope that you all continue to progress well and wish you all the best for the future.  I'll pop in now and again to see how you're all doing.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Mulan1960

Your letter is one we never want to read and is most difficult to answer. 

Truly this is sad news and although both of us are realists, and although we’ve been told “it’s terminal”, we’re never ready to part with our husbands.  When my husband was first told that he had Esophageal Cancer, we had no idea of what it was.  And of course our first thoughts were of death.  Isn’t that what we all naturally think when we see the medical report and “our” name is at the top?  He was only 65.  Life isn’t supposed to end at 65!  For us, the diagnosis turned out to be Stage III and operable but we didn’t know that in the beginning.  We wrote a will and bought cemetery plots as “our world turned upside down”.  All of a sudden “life” was all that mattered and all else was just “stuff!”

So we know the anxiety that you felt in the beginning.  I’ve read once more your first letter to us.  DEVASTATED-SHOCKED—I looked up the meaning of shock in the dictionary.  It said among other things a sudden upsetting or surprising event or experience—a blow—upset—disturbance—source of distress-surprise—revelation—a bolt out of the blue—a thunderbolt—a bombshell—a rude awakening.  Like you, we experienced all these emotions in one moment in time.  Add to that “breathlessness” and bewilderment and a sinking feeling that our life had just taken a turn and it seemed like the end of the road.  But just how soon would it end?    Suddenly nothing else mattered but “stayin’ alive!”  That was back in November of 2002.

Then in November of 2012, we found ourselves back in the same state of shock.  My diagnosis was not Esophageal Cancer but Peritoneal Carcinomatosis.  It was Stage IV.  So I have to tell you I get a “sinking feeling” when someone writes to tell us that the cancer has spread to the Peritoneal cavity.  But you did every possible thing you could do to get the best of help for your husband.  You should have no regrets.  And you also reached out to survivors who had a personal experience with Esophageal Cancer.  You left no stone unturned. 

That’s the bad thing about Esophageal Cancer.  The stats are not good for this cancer because something as ordinary as hiccups or indigestion or heartburn can actually be cancer and we are none the wiser.  So often it is diagnosed as Stage IV and at that point, only palliative measures can be taken.  From what you wrote in your first March 2018 letter, this time the doctors were right.  But that didn’t stop you and your husband from fighting for his life.  And that you did.  Our hearts ache for you and all your family, although we’ve never met because really we EC & terminal patients are all part of one unique family.  When one hurts—we all hurt. 

You know the Bible says, “Rejoice with those that rejoice” and “weep with those that weep”.  And so we weep with you tonight.  I make no apologies for believing in God’s word.  There I read that “Weeping may endure for a night—but joy comes in the morning.”  There are no words that can comfort a broken heart in times like these.  Truly it’s night right now—but I’m looking forward to “morning”.  There we will be reunited with all our loved ones who have preceded us in death.  There’s no Esophageal cancer or any other kind of sickness, sorrow or weeping in Heaven.  Lest we forget—your letter reminds us of the brevity of life and how we must show our love and tell those we love how much they mean to us.  All along we’ve been praying for you and your husband.  I  know you sent us this letter as tears flowed down your face, but I thank you for sharing your sorrow with us as well.  Truly we all weep with you.  Cry May God comfort you as only He can.

With deepest sympathy,

Loretta & William

paul61's picture
paul61
Posts: 1349
Joined: Apr 2010

Dear Mulan1960,

I am so very saddened to hear that your husband has left us. It seemed just a short time ago that we were hoping the antibiotics had done their job and he had turned the corner in his struggle with the side effects of his cancer.

I am glad that he had a chance to return home and passed peacefully surrounded by people who loved him.

With my deepest condolences, sending prayers for peace and comfort for you and your family.

Regards,

Paul

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Mulan,

I'm so sad to hear your news.  I wish there was something more I could do besides say that I'm sorry for you and your family.  As you mentioned, at least you have the comfort of knowing he passed without pain in his own home with the people he loved by his side.  

I'm sorry for your loss,

Ed

Mulan1960
Posts: 28
Joined: Mar 2018

Thank you for your very kind words.  They are very much appreciated and I again thank you for all the advice over recent months.

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