Husband diagnosed with advanced gastric/signet ring in multiple places

Hi and welcome to the online community although I'm sorry you've had to find us.

Having a cancer diagnosis throws up lots of questions and I'm sorry that no one from the group has felt able to step forward to help. 

I've had a look through the past posts to see if anyone else has mentioned urinary incontinence but drawn a blank I'm afraid. However, when I typed 'signet ring' into the search bar it brought up these posts. You could have a read through them and respond to some of the more recent ones if you felt the poster could help you further.

I'm glad to hear that your husband isn't in any pain and I hope that his recent tests will mean that he's able to have the treatment his oncologist has talked to you about.

When you have a minute, it would be really useful if you could pop something about your husband's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Many thanks for that xx

Hi Arpie- I am new to  this forum but noticed your post. My husband has heredtiary diffuse gastric cancer- signet ring cell type-He is of a similar age and its been devastating for the family as due to its hereditary nature many have already died.  He also had a full gastrectomy in 2013 and all was well for years and now he has recurrence in the peritoneum/abdominal cavity. big shock and for whcih we were told there was no treatment and supportive care was the only option. he has remained remarkably well during the past year considering and although it has been a struggle and weve been half way round the country to get some of the support he needed  we are now looking at the possibility of trialing a therapy . Our story like yours is very long complex and convoluted to write but would be happy to chat with you if you think it would help. I wish you all the very best of luck with your treatment and hope to hear how it goes for you. x

Hi Biggles

I am sorry you are in the same situation & hope you, your husband and family are coping as well as you can.  

That's a bugger that it is hereditary  :(   We don't have kids, so that's a good thing I guess. 

It sounds like his recurrence is very similar to my hubby's but with my hubby's recurrence in more places yet again. :( 

Fantastic that he is still going well for over a year already as generally the longevity prognosis is not at all good.  :(

Could you tell me what meds he is currently on & what may have been tried earlier?  My hubby has just started the Capox regie (tablets only so far but may have a 25% Oxyplatin infusion in 3 weeks, depending on how he tolerates the tablets.) 

We are awaiting pathology on his PDL1 levels ..... if it is high, he may be able to try Keytruda immunotherapy tho his MSI levels were low ... for immunotherapy treatment to be offered - often both are higher.   It is not covered on our public health here & is quite expensive - but worth a try for 2-3 months, to see if it helps slow the progress.

His Her2 was negative, so he can't do Herceptin or Avastin.

We are also getting the DNA tested (Next Generation Sequencing) in the USA to see if the tumours have mutated & may have a specific medication that can target it, rather than just the 'accepted treatment' of Capox or Folfox.  It is also not covered here & costs a bit - but worth a try.

His dementia is still causing him NOT to feel pain (that signal just isn't being passed on!) so that is a good thing.  It also means he forgets that he has the cancer - also a good thing.  He is happy being at home & doing his word & jigsaw puzzles ..... 

I would love to chat with you regarding your own journey with your husband's cancer ..... either here or via private message ....  I am keen to learn more about the trial that he hopes to access.

I was diagnosed with breast cancer 3 years ago & found an online breast cancer forum here in Australia that has been a fantastic support for my own cancer journey, so am pleased that you have found this forum & hope it can do the same for both of us with our husbands' cancer.

Take care, all the best xx

Hi

Sorry for delay in responding- I must have missed the notification. So this is our situation at the moment.

Previously my husband had a total D2 Gastrectomy followed by chemo (capecitabine)and radio therapy .

More recently we also did the Liquid biopsy testing- we used Guardant 360 and ours too went off to califormia for processing. We did this becasuse one of the blockers to getting treatment was that we couldnt get a tissue biopsy  due to my husbands other health issues and due to location of cancer. We paid for this privately because its not common in the UK yet apart from a few trial places. unfortunately it didnt show any targetable markers but it did confirm and extend the knowledge about his cancer and most importantly proved that it is a valid process should any other family members need to use it ( we hope not but this disease is a disaster for this family).

what we did find out that might be useful to you - again through private consultation and lots of research papers- is that PD1/PDL1 status is not absolutely neccessary for immunotherapy to be effective. The research suggest it is more effective if you have high levels but there are numerous trials that have concluded that benefit can still be derived without it.- so it might be worth having a look at those. im sure youll know the pros and cons of Immunotherapy  already but probably like us you  are thinking it is worth a shot.

so for the past 14 months since the recurrence diagnosis we have had no treatment other than what is called 'supportive care' .

The biggest game changer for us has been nutrition and he now has a NJ tube feed which has bascially saved his life and has had a dramatic effect on his quality of life, weight, kidney function and general well being- all blood results improved .... and mostly importantly improved his chances of treatment options. we are looking at switiching to a PEG feed as this is easier to cope with longer term.

yes lets carry on chatting- I am new to this site so let me know how we can also privately chat and I can share some research papers etc with you if you like. x

Thank you Biggles - message sent.  I am lucky, my hubby can still eat what ever he likes, tho he is requesting smaller meals of late, as he did back in 2010 before he was initially diagnosed!

VERY keen to read any docs you have on the PDL1 not being absolutely necessary for immunotherapy to still work ....  awaiting those results.  His MSI were low. :( 

I am wondering if his dementia may also be blocking any nausea as well as the pain?  He starts his 2nd lot of chemo tablets & has his first infusion (low dose) in 9 days time.  He starts his 'break' from the tablets tomorrow.

Take care xx

Just heard from the Onc .... Sadly, Hubby's result for PDL1 unfortunately came back as PDL1 < 1%.  As his tumour is MMR proficient and PDL1 <1% there is no real role for immunotherapy.   :(   (MMR-proficient tumors include those that are micro satellite stable (MSS) and MSI-low (MSI-L) or tumors with intact MMR proteins. Of the 147,000 CRCs expected to have been diagnosed in 2009 in the US, it can be estimated that approximately 15,000 cases would show defective MMR if tested.)

Tissue is now being sent off for Foundation One sequencing in the USA

The genome sequencing showed that a couple of meds in the USA are being used on his specific mutation .... but they are not available or approved for use in Australia, so no joy for us chasing that rabbit!  :(  So no Immunotherapy for him, sadly. :(

OK .... Hubby has had 3.5 lots of chemo (4 lots of Capecitabine tablets & 3 lots of chemo infusion oxaliplatin at 40% solution ... and his markers have gone DOWN last week!  YAY!!  We've reduced the tablets from 3 x twice a day, to 2 x twice a day, as he was really feeling exhausted & horrible - and one foot has totally peeled, both the sole and the skin .... so hoping this will reduce with the reduction in tablets!  Scholl has a gel 'pedimask' that I will try on them this week, as well as other creams.

Has anyone else been experiencing the peeling feet/hands?  What have you used, that works?

His abdomen has softened a lot & the Onc is really happy with that too, as it was extremely firm on her first examination.  He is eating well, tho doesn't like big meals in the

He has another PET scan at the end of the month, so hope it shows a reduction in tumour sizes.

Wish us well!

Hi Arpie,

When dad was on 5-Fu, he had iffy hands and feet. The best thing you can do is try and keep his feet cool. capecitabine/5-FU is excreted through the sweat glands, so the less his hands and feet sweat, the less they will be affected. We tried lots of creams but the one that worked best for dad was just shea butter.

Which mutations did Foundation say were actionable - are there perhaps any trials with centres recruiting in Australia?

SDH x

Hi Arpie

I havent been on here for a while ( care  repsnsibilites take up a loooooooooot of time at the moment) but pleased to hear your husband markers have gone down and you seem to be making some gains. I wanted to let you knwo that my husband has started on immunotherapy and he too has less than 1% PDL1 expression, but the most recent study called Attraction 2-5 study  ( there are 5 updates on the study) shows that even those without PDL1 expression benefitted from the therapy and had some even a complete response. On the basis of that study we  Immunotherapy was agreed. it isnt licensed as yet for gaastric cancer in the UK either but it is currently going through NICE assessment so we keep our fingers crossed that it may be available via the NHS later this year.  I tried to send you the papers but couldnt seem to attach them . Maybe one of the macmillan moderators might be able to help out with that?

Its early days so nothing to report as yet but will keep you posted.