Several Questions. Help greatly appreciated

Darwin

Hi Everyone
This is my first post. I hope you will forgive the lengthy post but feel it easier to expalin before asking questions. I found this site yesterday and reading the posts have told me more than the Oncologist or Doctors have. Firstly a short summary of the situation. Eighteen months ago I was living and working in Hong Kong when I got an email from my ex husband, (ex of 22 years ago) He told me that he had been disgnosed with bowel cancer and would have an operation in Canberra where he was working. As he ever remarried and had no one to care for him I offered to help when he needed me. He had an operation on his bowel (March 2006)and they said they got it all but that he had one lesion on his liver and they would deal with that once he recovered from the operation. Ten weeks later he had taken early retirement (he was 60) and moved to stay with his Mum in Adelaide while he had chemo. By then they said he had several lesions in the liver but said there was nothing they could do about that. After 6 months of chemo his markers went down from 770 to 6.8 so he decided to move to Darwin to a house he owned there. His thinking was that he needed a project to focus on. He has been in Darwin since January 2007. Since being here he was on fortnightly lower dosage chemo folfox. In June 2007 the markers went up to 85 and so he went back on to full strength chemo. At this point I left my job and moved to Darwin to be with him. I am glad I did as he often seems confused and while pallative care team is very nice they seem to avoid any clear answers. All the Oncologist does is literally pat him on the knee and smile. John was told he had moved into second progression stage and that the chemo was changed to folfiri and he also had Avastin which has cost us now AUD30K. The Oncologist said if we paid for this it would give him 5 more months of life but I don't understand how they can say that when they can't give us any idea of how long he will live without it. It's confusing. When I asked pallative care she said "It will unfold and slowly become clearer". I feel so frustrated. John says he doesn't want to talk about it but several times he has just burst into tears and sobbed uncontrollably. I think the uncertainly is adding to his stress.

Two months ago he had a scan and there are tumors in his lungs and also have returned to the orginal bowel site. No one will say how long he can live. All we are looking for is approximate time frames not definitive dates. Any thoughts?

I have asked many times but can't get any information as to the likely progression of the cancer... symptoms and what to expect. So far he has pain and takes painkillers, severe bouts of diahorrea which cause a bleeding rash between the buttocks from constant wiping with baby wipes or constipation, difficulty hearing sometimes. His appetite is very poor and he has tingling in his mouth hands and feet. In the past few weeks he has started to get liver pain due to the liver pressing on the 'capsule' we were told. He has also started itching. Is there anything I can get him for the itching? They suddenly told us two weeks ago they might consider a liver resection which would be pallative. When I asked what the benefit would be as the cancer was also in the bowel and lungs there was no answer. Would such a serious operation be wise given John is now less than 60 kilos and the cancer is eleswhere? Neither John nor I know a single person in Darwin so I really don't know how to find the answers to how long do people with this progression of cancer live? What are the symptoms we should expect?

Sorry if this is a disjointed ramble but I feel totally isolated here. I am in the midst of totally renovating a two storey house on my own arranging tradespeople as John insists this is done yet is unable to be involved. He sleeps a lot and tires so easily. He can still on good days drive for 20-30 minutes but finds it difficult to walk or stand for more than 2-3 minutes. Any advice would be much appreciated. I want to support him through this but am finding the situation very difficult.
Best Wishes to you all
Dorothy
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

brainman

Darwin, I am very sorry about John's cancer. You are a very good person to reach out to your ex like you are.

It does sound like John's cancer has gone well beyond any hope of "cure". The best his medical team can do is to help with the side-effects and symptoms he is having.

I do not know how much longer he has to live. I wish his own medical team would be more direct in their answers to you. However, it does sound like we are talking about months rather than years. However, as I always say about a prognosis: A prognosis is just a statistical probability. If my original prognosis had been right, I would have died at least 5 years ago.

What specifically will happen to him is also not clear because the cancer is in three major areas at this point. So, as his palliative care provider said: "It will unfold and slowly become clearer." Here are some of the possibilities... (there might also be a combination of some or all of these)... :

1. As the tumors in his liver grow and affect more and more of the liver's functions, his body will not be able to remove the toxins from his blood. This in turn might cause generalized weakness, loss of appetite, nausea, kidney problems, loss of weight, change in color of his skin, itching, etc.

2. As the tumors in his lungs grow and affect his breathing, John will become weaker, short of breath, not be able to stand or walk very much, etc.

3. As the tumors in his colon grow and affect his digestion, John will have bowel problems, digestion problems, loss of appetite, nausea, etc.

It sounds like he is already having some of these symptoms. Keep working with his medical team to try to find ways to help him.

I have painted a pretty bleak picture for you. I hope I have not overwhelmed you too much but colon cancer that has metastasized can be overwhelming. I encourage you to help John make the most of what ever time he still has.

You and John are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Mon Feb 11, 2008 5:59 pm Post subject: Help greatly appreciated

Hello Dorothy
I must say I am feeling your frustration & despair since reading your story about John & yourself. You are such a selfless person & an inspiration to us all with the love & honour you have for John. I am so sorry John is enduring this pain & suffering with his cancer & my prayers & thoughts go out to the both of you.
I can fully appreciate the isolation you feel as I too have lived in Katherine, NT, & know first hand what deficits there are to living in a remote location. I have spoken to a relative of mine who works at Katherine Hospital & she tells me there is NO Oncology Unit in Darwin, so the information & support you need at the mo will be almost impossible to find! My relative did tell me that alot of cancer patients from the NT travel to Adelaide (from the top end of Australia to the bottom end!!) for their cancer treatment & specialist oncology appts. This in itself is a logistical nightmare!
Jim (brainman) has offerered plenty of insight on his knowledge of John's current health & I'm sure there is plenty of info here to help you.
I would suggest you give the local oncologist "a wide berth" as he has nothing useful to offer you. Can you source a specialist in Adelaide (John was treated there before I read)? I know with some cancer specialists in this technological age that consults can be done over the internet. You send your chosen specialist Drs reports, mri's etc electronically & you could get a more learned opinion on John's condition. Although as Jim said, the symptoms & history of John's condition don't paint a very bright picuture. For this I am so sorry.
Once again my prayers & thoughts are with you at this difficult & challenging time.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

Darwin · Posted: Mon Feb 11, 2008 10:55 pm Post subject: Thanks

Thanks Jim and Angie

It is overwhelming but we will manage. Thanks for the information, advice and support. I can't think of a worse place to have Cancer than Darwin and the heat. 93% humidity and isolation make it difficult on top of the renovations of course:) They are almost finished thank goodness.

I do value knowing there are people out there who understand and offer support.

There is no oncology unit in Darwin and the one oncologist is serving more than 250 patients. Pallative care are good but very over worked and the huge change over in staff makes it difficult. At most appointments we see a new person and the files aren't kept up to date so they start from the diagnosis. I have asked for a second opinion re the liver resection and they say they will send the scan to Adelaide so we can only wait to see what they say.

John is very angry, he seems to be in denial and refuses to tell the Drs the truth about his pain. He takes the medication erractically and then takes extra pills for the breakthrough pain. He just won't listen and gets extremely angry when this is questioned. This with his confused state of mind make it difficult to support him but I have said it is not up to anyone to say how he should be dealing with this as it is his body and his life and we all need to respect that. Many posts speak of the person with cancer being calm but all I see is John constantly angry. I wish I could help him.

Best Wishes and agin thank you so much for your support and information
Dorothy
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

In

Dorothy,

I'm so sadden by John's Cancer. You are truely an amazing person. So caring and supportive at this awful time. Other than what Angie and Jim has said, All i can say is be there for him, through the good days and the bad. As i know you are doing now. I wish you both some peace and some painless time together.
_________________
Thinking of you Inica

**Administrator**

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

Darwin · Posted: Tue Feb 12, 2008 8:39 pm Post subject: Thank you

Thank You so much for you kind words but really I don't think I am doing any more than I would like to think someone would do for me. We all walk this life together and need to be there for each other. I have always believed the "Do onto others" approach to life is the best one. It must be my Irish upbringing:) I have been truely blessed by having an angel of a mother who died of stomach cancer in 1984. I nursed her through that difficult time but it was much different from what John is going through.

I think you are all special and good people to run this website and help so many of us out here.

Hugs all round
Dorothy
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

wishIcoulddosomething · New User Joined: 12 Feb 2008 Posts: 1

Hello,

Sorry ahead of time for the long posting. I am in a similar situation in that I am assisting my ex-husband (he is only in his mid 40's, we divorced over 10 years ago) who was diagnosed with Stage IV colon cancer with liver mets in March 2006. His mother died from colon cancer and his grandfather died of brain cancer. He decided to have genetic testing done and found that he has a genetic mutation related to HPNCC. We have two children together and both of them have tested positive for the genetic mutation as well (which was devastating to find out), but this will hopefully save our children's lives in the long run.

I am remarried and my current husband has been wonderful about everything. Still it is difficult and there are so many emotions that I am trying to get a handle on. My children are in college and we have recently gotten the news in January that his cancer has spread to the point that there is no chance for a cure and my ex has decided not to pursue treatment any longer. It has spread to the peritoneal, mesentary, and numerous other places in the abdomin. He has stated that he wants to enjoy whatever time he has left and doesn't want to prolong the inevitable. Without treatment, the doctor is giving him less than 6 mos. to live and thinks that within 3 mos he will be close to some kind of crisis. We are trying to support him in his decision, however he is already in pain and really isn't enjoying his time at all. Plus, he had another appt today for bloodwork and it seems that his bloodwork is already showing the effects of the cancer spreading. Last month, his bloodwork was pretty normal other than the elevated CEA levels. Now, his WBC Eos, ABS Neut, Glucose, Alk Phos, and LD levels are all high and his Lymph is low. His CEA has doubled in three weeks time.

He has not remarried and other than a few family members, doesn't have a lot of support. I've tried to encourage him to get into some type of cancer support group, but he hasn't done it. We've just taken a daybed over to his apartment and gotten the paperwork for Hospice. I am feeling pretty down myself, because I know what we went through when his mother started to go downhill. I'm trying to help my children deal with this and in some way prepare them for what is going to happen soon, but realistically I know that I can't protect them from what is ahead. I feel so sad for my ex. I keep thinking about all of the things he is going to miss in my children's lives (college graduations, weddings, birth of grandchildren, and such) and my heart breaks for him. Today I hugged him while we both cried about that very issue. Part of me also feels guilty because I (as far as I know) get to be there for those events. I feel so helpless and wish that I knew the right things to say or do to help him.

I think that it is normal for your ex to experience some anger. I know that when my ex is in pain, he tends to be a little short and I don't think he means to be. But when you're in pain, it is harder to deal with things. Maybe we can support each other through this rough time. I'm glad you posted. I've been reading the post for many months, but didn't join until I read yours.
_________________
Wishing the best for all who are dealing with cancer themselves or in their family.

DK

Darwin · Posted: Wed Feb 13, 2008 3:57 am Post subject: Contact

I certainly empathise with your situation. John's bloodwork results where improving until a month ago when the tumor markers started to increase again even though he is still having Avastin. My email address is dorothyk@iinet.net.au if you would like to email me.

Best Wishes
Dorothy
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

Georgie Girl · New User Joined: 10 Feb 2008 Posts: 6

Dorothy and DK....

I think you are amazing people to help your ex's out like you are..

My Dad has stage 4 colon cancer and unfortunately is not doing so well.

I will keep you both and your family's in my prayers.

Georgie Girl

Darwin · Posted: Wed Feb 13, 2008 9:47 pm Post subject: Thanks Georgiegirl

Thanks for your kind words.

I don't think as I said before it is anything special that I am doing. I'd like to think if the situation was reversed someone would do this for me that's all.

Mind you my partner has been very supportive and understanding. He came up to Darwin from Melbourne where he works for two weeks of his vacation leave over Christmas and spent the entire time working on John's house on the projects John wanted done but can't do himself like laying paving slabs etc. John seems more content now that the renovation project he was so fixated on is coming together. My partner is a caring supportive person and this situation has reinforced my total respect and admiration for him.

Everyone eho is a carer is a caring person and is to be applauded.

The truely amazing people are those struggling with this awful illness. They are hereos everyday.
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

Darwin · Posted: Wed Feb 13, 2008 9:51 pm Post subject: Georgiegirl

Ooops sorry I pressed the button too quickly....

My thoughts and prayers are with your Dad. Give him all the love you can and tell him all the things you want to say. This will help you later as I found this comforting when I lost my Mum to Cancer some years ago.

He is lucky to have such a loving daughter.

May God hold you both in the palm of his hand.
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

Darwin · Posted: Tue Feb 26, 2008 1:00 am Post subject: Confused

My ex husband's CEA markers have stopped coming down and seem over the past 6 weeks to have levelled at 35 and 38. After his first cycle of chemo they were down to 6.8 but then soared to 400. I am now confused as his Oncologist is now talking about the option of a liver resection. He has bowel cancer with mets to liver and lung. I don't quite understand why they would be suggesting this when the cancer is back in the bowel and also in the liver. The dr said it would be a resection for pallative reasons. It seems like a very big op to consider if it is not going to cure him. Has anyone else had this op in a similiar situation? He asks mu opinion but I don't know what to advise and he doesn't really know what would be best. The Oncologist is extremely difficult to talk to. Any advice would be appreciated.

Also does anyone have any suggestions for treating his itchy skin.
Thanks!
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

ksplat · Posted: Wed Feb 27, 2008 6:40 pm Post subject: Re: Confused

Hi Dorothy
I am pleased to read you have found support here on this forum. Unfortunately, I am not familiar with this type of cancer & can't really clarify anything for you but wanted to let you know you remain in my prayers & thoughts.
You are really an amazingly, loving, courageous & generous soul & I pray your spirit continues to shine through John's cancer battle.
IN additon I wanted to let you know that the Darwin palliative care unit is financially very well supported....I don't know whether you can pursue this area for answers to your questions, but surely they can help advise in regard to the skin affliction (itching) John is experiencing. As to the Oncologist, I spoke to my cousin in Katherine who asked her supervisor @ the Katherine Hosp & was told that with your "limited" choices of oncologist in Dwn perhaps you should/could approach one of the hospitals in Bris like the Royal Bris or Wesley Private, you would require a referral from your Dr in Dwn but perhaps you could speak to him/her about this option.
Thinking of you.
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

Darwin · Posted: Wed Feb 27, 2008 7:01 pm Post subject: Thanks Ksplat

The Palliative care team in Darwin are excellent. The Oncologist lost both his parents to Cancer and doesn't like to give bad news I am told. He is nice enough but overwhelmed with work I think and there are also cultural issues involved. Anyway I have decided to take one the nurses with us to our next appointment and see if that helps. Thanks so much for your kind words. We all on this forum are people who are doing the very best with what resources, emotional and human, we have at the time. I think and pray for everyone facing this challenge in their lives.

If you want the rest of my news KSPLat have a look at the Lung Cancer threads. Otherwise please feel free to drop me a line at the email address posted above.
Best wishes
Dorothy
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

Darwin

Hello Everyone

Just an update - the Oncology Unit promised for Darwin by the Australian Federal Government in 2001 has yet again been set back. The governmnet has just refused both of the two tenders to develop it. This is very sad news for the people living in the entire Northern Territory.

My ex hasn't had chemo for 6 weeks as he is on antibiotics. He has an eye infection due to the white cell count being so low because of chemo.
He has quite severe pain in hislower back which the painkillers don't seem to abate. He doesn't want to tell the pallative care team about this so I hope he will change his mind soon and get some relief. Is this pain in the lower spine area and abdomin to be expected? Any suggestions as what to do to help it? Hot water bottles etc... I don't want to do something that will make it worse.

Thanks for your advice.
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

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