Can anyone offer support, guidance or advice please

missamp1

My brother-in-law, Dennis has sadly been diagnosed with an adenocarcinoma of the stomach - (Pyloric Sphincter) with a secondary cancer of the fatty apron (omentum) and stomach cavity fluid.

The prognosis is 3-6 months without any treatment at all.

Apart from the complete devastation we all feel, we have also been trying to gather as much information as we can on anything and everything so that we can help him....

He has just met with his Oncologist and the recommendation is for a course of Chemo - ECF.

We are desperate to know whether this is the only Chemo available, whether the side effects are going to be worth the treatment or indeed if there is another treatment or Chemo regime or clinical trial that would benefit Dennis more.

Our main concern is that Dennis has the best possible quality of life with or without treatment for the longest possible time.

At the moment, there seem to be so many unanswered questions and tough decisions to make and yet despite all the professional/qualified experts, we still feel abandoned and alone with these extreme choices to make.

Is there anyone out there with the same condition?
Is there anyone out there who has had/is having the same Chemo ECF?
Is there anyone out there that can offer some personal advice or support?

Thank you so much
Sad

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Anna-Maria Picariello

mousa

In July 2004 my husband was diagnosed with stage IV adenocarcinoma of the stomach. He was given the same prognosis as Dennis. Today he is very well. PET-CTs done in November 2005 and May 2006 showed no cancer.

My husband (65) had 10 heavy chemos of Taxol, Cisplatin and 5FU after which he went onto oral Xeloda 1500 mgs twice daily.

There were many other things involved in getting him well - Reiki, hands on healing, herbal medicines, meditation, prayer, support from family and friends - all played a part.

If you would like more information please let me know. I think I can just about tell you everything.

In the meantime, adding Dennis to my prayer list.

Love, Val

jennysking

Dearest Anna-Marie

Dennis and your family are in my thoughts. Val is a guru on this subject and please listen to and take comfort in her advice.

My husband (currently shed loads on daily information on 'Larry’s progress') is another example of - just don't accept the statistics.

Chemo is exceptionally tough for the patient and family - but it is worth it - even when then initial results might seem poor - longer term there are great results and achievements. (Val's husband is living, happy proof and there are plenty of others)

My husband had a regime of ECX (the Xeloda replacing the 5FU) it was tough - but it offers true hope and a future. (his registered name is the goat - by clicking on a profile you can see all they have posted)

The quality of life you have as an individual and as a family is what you make it. My husband went the gym 4x a week on chemo, we went on a wonderful holiday, he gained 25lbs, we laughed and sometimes cried. You would be amazed at what can be achieved with strength, family, faith and a refusal to be a statistic.

I have read hundreds of hours of general and medical information - but this forum has been a true strength. Read-up but please don't take the data as 'final' - much of it is old and all of it is about other people!

You do not mention how old or how fit Dennis is - please tell us, so we can give you more relevant information.

Thoughts and hopes with you
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Jenny

missamp1

Hello Val

Thanks so much for your message. It means alot to have someone out there...

Sadly, Dennis not only has adenocarcinoma of the stomach - (Pyloric Sphincter) but also a secondary cancer of the fatty apron (omentum) and stomach cavity fluid. Did your husband have a secondary cancer? Or was it primary?

Can you please explain what the 5FU is and also how long was the Xeloda prescribed for? It appears that the UK have different Chemo regimes than they do say in the US....

Thanks again
Best wishes to you and your husband
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Anna-Maria Picariello

missamp1

Hello Jenny

We were extremely grateful to you for finding the precious time to write to us.

Dennis is 56 and very healthy with no current symptoms, although he has had a stent fitted which is working well and he is eating normally.

The main concerns right now are Chemo or No Chemo....it is an extremely difficult situation and the Oncologist has said that Chemo is best when he begins to show symptoms until then he has been told to enjoy his life as best he can and do the things he wants to do (holiday etc.)

Strength to you and Larry from us all
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Anna-Maria Picariello

mousa

Dear Anna-Maria,

On 10 July 2004, the surgeon reported my husband's cancer was Linitus Plastica and the tumour had invaded up to the esophagogastric junction and there were numerous lymph nodes along celiac region and multiple perigastric lymph nodes. The surgeon opened, looked, and closed. The pathologist’s report was that the cancer was a metastatic adenocarcinoma.

5FU is fluorouracil.

Every 3 weeks (if he was well enough) my husband had the following:

Taxol 260 mgs, Cisplatin 120 mgs, 5FU 7,500 mgs.

Taxol and Cisplatin were given in the hospital chemo room on day 1 and the5FU was given over about 5 days. This was from August 2004 to May 2005 when my husband said he had had enough chemo and the oncologist agreed that maximum benefit had probably been had. In June 2005 my husband started Xeloda and after some problems with side effects settled down on 1500 mgs twice daily for 7 days on Xeloda, 10 days off Xeloda. He is still on this regimen. The oncologist will consider reducing/stopping Xeloda if my husband has another clear PET-CT in November 2006.

In your post of 4th July you wrote that oncologist recommended a course of ECF and in your post of 5th you wrote that oncologist said chemo is best when Dennis starts to show symptoms and that he is having no symptoms at the moment. I presume that oncologist has recommended that Dennis not have chemo at the moment and if this presumption is correct, I don’t understand the oncologist’s thinking. To me, Dennis has cancer and should have treatment if that is Dennis’ wish. Why wait until more symptoms appear and the cancer may have spread?

At our first consultation with the oncologist, my husband was told the same as Dennis “maybe best to go enjoy the few months left to you”. My husband said no, he wanted treatment and the oncologist immediately said “OK, let’s do it.” So, for Dennis, the final decision must rest with him after he and you and his family have gathered all the information they and you can and discussed everything.

I hope the above will help Dennis make the decision to go for chemo. If my husband had not decided to have chemo and fight we would not have spent today enjoying a shopping spree and going out for dinner!

Much love to you all at this very difficult time.

Val. BTW We are in Thailand

missamp1

We have sought a second opinion, but once again sadly the news is not great and we have had to ask for further clarification and guidance to help reach a decision on treatment.

The clinical impression findings are consistent with gastric cancer with peritoneal implants at stage IV.

The recommendations are systemic chemotherapy. Several schemes that have activity include: Cisplatin-5-fluorouracil-taxotere; Cisplatin-5-fluorouracil-epirubicin; Cisplatin-irinotecan. We have been told that these all have similiar activity with a response rate of 40% and a median survival of about 9 months. With no treatment expected survival is 3-6 months. It is not likely the condition will be operable at any time. There is no specific diet recommendation, and vitamins supplements can be taken though unlikely to affect the condition.

As you can imagine this has hit Dennis hard and left the rest of us feeling even more helpless and disturbed. It is proving even more difficult to remain positive.

Sad

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Anna-Maria Picariello

mousa

Dear Anna-Maria,

Dennis was wise to get a second opinion but I am sorry that the seriousness of the cancer was confirmed.

Now Dennis has to decide on a course of action,

This is what my husband and I did after his cancer was found to be inoperable.

1. My husband decided to have chemotherapy, Taxol, Cisplatin, and 5-FU.
2. I contacted all relatives, friends, co-workers, and asked them to send prayer and/or good thoughts. My husband was overwhelmed, very touched, and gained inner strength from knowing so many people loved and supported him.
3. The GP overseeing my husband’s exploratory operation and general care advised that I learn Reiki because “It works, I don’t know why”. I learned Reiki and immediately started treatments on my husband and myself.
4. I got in touch with Reiki Masters in the area and they gave group Reiki to my husband.
5. I was introduced to a healer, a wonderful German lady, who lives near us who gives hands on healing. Also, she sends distance healing, every evening, to the two of us. She became our rock here on earth.
6. My main concern was for the state of my husband’s soul. I am a firm believer that there is another place. I have had too many experiences to believe otherwise. This other place is wholly good and supportive to us here on earth. We were introduced to the books by White Eagle who was/is the guide of Mrs. Grace Cooke through whom his words were spoken. Every evening I read a chapter to my husband and he was comforted and strengthened.
7. With the oncologist’s permission my husband takes Tian Xian, a Chinese herbal medicine and Lingzhi capsules, another herbal medicine.
8. My husband only takes vitamin supplements prescribed by the oncologist. I have read that vitamin supplements might interfere with chemotherapy.
9. My husband also takes a drink made from various grains.
10. The oncologist prescribed Zadaxin to improve the immune system.
11. The oncologist asked a venerable monk to visit my husband and take my husband through a meditation exercise. My husband continues to enjoy meditation.
12. We stopped reading newspapers and watching news on TV – 99% of it is bad news. We played our favourite music and watched movies, cuddled up together.
13. And maybe the most important thing: Dennis must forgive everyone who has ever done him wrong, and he must forgive himself for anything he has done wrong. Let it go. It was all part of a learning process. Put it behind with the intention of going forward in a good way.

At the exploratory operation my husband was given a feeding tube into the jejunum (small bowel section after the stomach and duodenum) and he was fed via this for about 19 months together with oral feeding which over the 19 months became more and more normal. The feeding tube was removed when PET-CT in November 2005 showed no cancer.

It is a very tough experience but it can be got through.

If one wants to live, is not ready to die, one has to take chemotherapy and slug it out.

I will help with anything I can.

Love and Light to you all.

Val

missamp1

Hello Val and Jenny

Thank you so much for your wisdom, support and guidance.

It certainly does not feel quite so lonely having people like you around.

I wanted to update you on the latest with our darling Dennis.

He met with another Oncologist today at Christies Hospital in Manchester - the meeting went far better than expected - if only in the way the Oncologist spoke about Dennis and his condition.
Dennis has felt like he is walking around living a hellish nightmare, there is still no change with the diagnosis, but he now has something unimaginable a few weeks ago - [b]HE HAS HOPE[/b]....the Oncologist simply said that they try to cover all leads and will go down any avenue to try and help him. Amazing how this is such a matter of fact statement in any other situation, but means everything in this instance.

Dennis is going to take 10 days or so to do a few things he needs to do...then he has a scan booked and then his Chemo is going to begin - Robosin Oxyolyplatin (Cystoplatin - an advanced/new version) and Xeloda (EOX).

There is nothing like HOPE and the support and love of family, friends and this forum to set someone up for the next battle ahead....

A huge step in what feels like the right direction!

True grit and courage to us all.
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Anna-Maria Picariello

jennysking

Hi Anna-Maria & Dennis

This is great news

Hope is the most important thing you can have. This combined with inner strength is a magic formula.

The chemo is tough and it takes time (what seems like an eternity) Xeloda is a pill taken 2 or more times a day but cisplatin is delivered via IV and needs substantial IV fluids during treatment to keep the kidneys clear. Dennis will need and want company during treatment. I don't know your work situation but as they are likley to give him this only once every three weeks - arrange for someone positive to be with him for these days.

Chemo effects everyone differently. There are loads of side-effects - nausa, fatigue, fuzzy thinking, etc - please be sure to post for advice and support. Loads of people here have been through this and can help you or answer you questions.

Enjoy the next 10 days - do some things together as a faimliy that make you laugh/smile. Another little bit of magic.

I am delighted you have found a more supportive team at Christies - they will look after Dennis and you A-M need to get friends and family to rally round and support each other. Try to make sure everyone understands what Dennis is going through (from a distance it this can be difficult - taking a pill a couple of times a day does not sound so bad to a lay-person)

Love and hope. Keep us posted.
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Jenny

mousa

Dear Anna-Maria,

Am so pleased that Dennis has found the right oncologist. You already know that you are all in this together with the oncologist and all the hospital staff. Lean on your friends - ask them to pray and/or send good thoughts. Don't be afraid to ask the oncologist about anything - even the smallest thing. Medications will help during the chemo sessions. My husband's oncologist always sedated my husband with Lorazepam during Cisplatin and Taxol ("Best to sleep through it.") But after a few chemos my husband stopped sedation which I was glad of because it was boring for me just sitting there!

I would be most interested to know what side effects Dennis gets from the chemotherapy and how the oncologist deals with the side effects. Also, would like to know the dosages of the chemos.

Please post for support and advice.

How many chemos are scheduled?

Now, Good Luck and may God bless you all.

Love and hugs,

Val

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