Newly diagnosed stage 4

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.

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.

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.

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.  

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.

Deathorglory said:

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 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.