1. < Colorectal Cancer

Life expectancy: Fearing, but preparing if chemo doesn't work

Posted by tracyjayne66 @tracyjayne66, Jul 18 3:23pm

Hi my husband was diagnosed with rectal adenocarcinoma 6 weeks ago, it has spread to his liver and lymph nodes tracking towards the aorta ( consultants words) he started palliative chemo 2 weeks ago ( Oxaliplatin-Capecitabine ) this caused a serious heart spasm putting him in hospital for a week, he can no longer take the Capecitabine, we have an appointment for next monday to discuss further chemo, I am terrified of them saying the chemo won't help, we have not been given any sort of life expectancies and I'm not sure I can ask this question in front of my husband, does anybody here relate to my situation and have anykind of answer ? I know everybody reacts differently to chemo as wel as the cancer so perhaps I shouldn't be asking but I'm scared and want to be prepared, thankyou in advance. ( UK )

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

tracyjayne66 | @tracyjayne66 | Aug 29 12:03pm
In reply to @rjjacobsen "I hear you - some locations do not have good cancer care available locally and finding..." + (show)
@rjjacobsen

I hear you - some locations do not have good cancer care available locally and finding good care may require travel, lodging and expenses.

I was fortunate to live under 50 miles from Mayo in Rochester and 30 miles from Mayo Health System in Red Wing which made treatment options and logistics MUCH easier. All transit was by car and we could stay at home except for the surgery/recovery.

I wish and pray for the best for you both.

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I live in the UK so really not possible for us , we have I suppose, what we class as good cancer care but not on form with what is available in the USA , thankyou so very much for your kind words xx

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paul28 | @paul28 | Aug 30 5:35am

I understand that you are working with Oncologist/ Chemo at present.
But at the time of original diagnosis, was an evaluation by a Rectal-Colon surgery specialist received? This would, in my experience, be the prudent starting point; surgical evaluation first before advancing to Oncology.

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gmama1117 | @gmama1117 | Sep 9 4:04pm
In reply to @tracyjayne66 "Thankyou, believe me if we had access to enough money to bring him to Minnesota I..." + (show)
@tracyjayne66

Thankyou, believe me if we had access to enough money to bring him to Minnesota I would !
It's so horrible that money comes in the way of life saving treatment.
My aim this week is to get something done for the main tumour, it is literally just inside his bottom so he is sitting on it, this week it has become unbearable for him, he is taking his max dose of morphine and his other pain meds but they are only providing very short term relief, we are both absolutely shattered as this carries on through the night, even when he gets a little relief and dozes off for a while I remain awake waiting for the the next episode.
We now have another appointment this coming monday to discuss results of MRI scans we had last week, hopefully they can suggest something for the tumour as he really won't cope with too much more of the pain.

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My husband spent a few years going the holistic route. As he started the chemo (cocktail is what his support group suggests) he had a hard time sitting, he used blow up donut shaped cushions - he tried several until there was one he would take with him everywhere. Almost a year later, his rear pain is gone, but still needs to sit on soft seating. Lots of prayers for all suffering through this nightmare.

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cvestor | @cvestor | Sep 19 8:32am
In reply to @tracyjayne66 "Thankyou, believe me if we had access to enough money to bring him to Minnesota I..." + (show)
@tracyjayne66

Thankyou, believe me if we had access to enough money to bring him to Minnesota I would !
It's so horrible that money comes in the way of life saving treatment.
My aim this week is to get something done for the main tumour, it is literally just inside his bottom so he is sitting on it, this week it has become unbearable for him, he is taking his max dose of morphine and his other pain meds but they are only providing very short term relief, we are both absolutely shattered as this carries on through the night, even when he gets a little relief and dozes off for a while I remain awake waiting for the the next episode.
We now have another appointment this coming monday to discuss results of MRI scans we had last week, hopefully they can suggest something for the tumour as he really won't cope with too much more of the pain.

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Mayo has a payment plan so talk to them Also if you are being treated for cancer you can stay at hope lodge for free you have to do your own food but it saved me over 6 thousand dollars. And it is less than 6 minute walk to the clinic or you can use the shuttle service. Letting money control your life will let the cancer win. I also have a tumor just inside of my anus but I can sit but loose stools is a trick to control As they say you cannot take it with you So call Mayos and talk that free. Get out of your shell and beat this nasty disease Make that call and just go to Rochester

REPLY
1 reply
paul28 | @paul28 | Sep 20 9:35am
In reply to @cvestor "Mayo has a payment plan so talk to them Also if you are being treated for..." + (show)
@cvestor

Mayo has a payment plan so talk to them Also if you are being treated for cancer you can stay at hope lodge for free you have to do your own food but it saved me over 6 thousand dollars. And it is less than 6 minute walk to the clinic or you can use the shuttle service. Letting money control your life will let the cancer win. I also have a tumor just inside of my anus but I can sit but loose stools is a trick to control As they say you cannot take it with you So call Mayos and talk that free. Get out of your shell and beat this nasty disease Make that call and just go to Rochester

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[QUOTE] "Letting money control your life will let the cancer win". [end QUOTE]

I think that is a given; never a truer statement.

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tracyjayne66 | @tracyjayne66 | Oct 2 1:37pm
In reply to @rjjacobsen "I hear you - some locations do not have good cancer care available locally and finding..." + (show)
@rjjacobsen

I hear you - some locations do not have good cancer care available locally and finding good care may require travel, lodging and expenses.

I was fortunate to live under 50 miles from Mayo in Rochester and 30 miles from Mayo Health System in Red Wing which made treatment options and logistics MUCH easier. All transit was by car and we could stay at home except for the surgery/recovery.

I wish and pray for the best for you both.

Jump to this post

I lost my husband on 22nd September, there is an inquest as he died at home and not from the cancer, the paramedics say he went into cardiac arrest and wouldn’t have known anything about it, I’m not so sure, it was horrific , I had to do CPR until the paramedics arrived but just couldn’t bring him back , my heart is absolutely shattered xxx

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2 replies
rjjacobsen | @rjjacobsen | Oct 2 1:51pm
In reply to @tracyjayne66 "I lost my husband on 22nd September, there is an inquest as he died at home..." + (show)
@tracyjayne66

I lost my husband on 22nd September, there is an inquest as he died at home and not from the cancer, the paramedics say he went into cardiac arrest and wouldn’t have known anything about it, I’m not so sure, it was horrific , I had to do CPR until the paramedics arrived but just couldn’t bring him back , my heart is absolutely shattered xxx

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I am so sorry for your loss. My prayers for you.

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1 reply
dawnsdc | @dawnsdc | Oct 19 11:42am
In reply to @isadora2021 "I’m so very sorry to read about your husband’s cancer diagnosis and his severe reaction to..." + (show)
@isadora2021

I’m so very sorry to read about your husband’s cancer diagnosis and his severe reaction to Xeloda 🌹

I’m not sure how openly you and your husband are able to talk between yourselves around his illness and treatment? There are a number of different treatments and if one is not suitable, it doesn’t necessarily mean the others are also not suitable.

Perhaps it may be possible to discuss a plan with your husband before going into seeing the oncologist so you are both on the same page? No doubt he is also fearful that his options are reducing and that time may be running down and he wants to know what you want to know.

Take all the time you need to talk with the oncologist and make sure he explains things so you can understand and ask all the questions you need. You may also discuss eith your oncologist getting a second opinion and where. It’s not rude or disrespectful to do so and very normal.?

Prayers up for strength and healing 🙏🙏🙏🙏

Perhaps you both could agree not to expect the worst and wait to see what other options the oncologist may have. If the oncologist gives options you need to both question him about the side effects and if necessary the hard questions around the benefits of treatments.

My stage 4 appendix cancer on statistics (remember that - they are statistics!) meant I had only a 14% chance of living 2 years. I am coming up to 3 years with no evidence of cancer.

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Oh, congratulations!

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dawnsdc | @dawnsdc | Oct 19 11:52am
In reply to @rjjacobsen "I am so sorry for your loss. My prayers for you." + (show)
@rjjacobsen

I am so sorry for your loss. My prayers for you.

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I am so very sorry. OX

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1 reply
isadora2021 | @isadora2021 | Oct 19 5:07pm
In reply to @tracyjayne66 "I lost my husband on 22nd September, there is an inquest as he died at home..." + (show)
@tracyjayne66

I lost my husband on 22nd September, there is an inquest as he died at home and not from the cancer, the paramedics say he went into cardiac arrest and wouldn’t have known anything about it, I’m not so sure, it was horrific , I had to do CPR until the paramedics arrived but just couldn’t bring him back , my heart is absolutely shattered xxx

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I am so very sorry for your loss of your husband and also for being there on your own 💔🙏 The same thing happened to my mother (a cancer patient) who passed suddenly at home in the early hours. She was due to go into hospital that morning to be rehydrated. My dad was the only one there. The paramedics had already arrived by the time my sister (a nurse) and I arrived but mom had passed before they arrived. My sister has convinced us that mom had no consciousness of what was happening. My poor father was traumatised for years. He needed to speak about it. It was hard to listen to the details each time, but he needed to share them and we needed to help carry them and to reassure him mom wasn’t aware. .

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