Is a stent placement the beginning of the end?
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M, don’t ever think of yourself as not being caring and loving because if you were that steeled you would not be on this Board at all! I always giggle to myself as you all think I am being such a good person and my answer is always I am doing it for selfish reasons. What I get back has got me through the last 6 years and then some! I also think it is normal to question ourselves afterall, we watch people we love more than life go through this horrific journey and smetimes the only way we can manage it is to become numb. We eventually become normal again even if it is a new normal. You never know how strong you are until “strong” is the only choice you have!
Adam, I am trully so sorry to hear about your story! Your mother was also so young, and three months is such a sort time to come to grips with the situation! The first months after my mum’s diagnosis I was numb with paiin and alcohol. I also know that it’s harder to give harsh news, so thank you for that.
I am, of course, aware that this might be the situtaion with my mum now. And no day has been normal, since I found out she has cancer, everyday of my life is an expression of love for her and an attempt to prove that I will be alright no matter what, so that she goes with peace when time comes. I hope you are also alright, even though everything is so recent for you.
As for false hope, the thing is that my mom was given no more than 10 days, when first diagnosed, then 6 months, then 3 months over the time she’s been sick and she has always managed to recover. Perhaps she does not this time. But perhaps she does.
Lainy, you are so amazing! I wish I could be as strong as you. Trying to support other people after what you’ve been through, it’s amazing…I’m always worried that if my mum passes away, I will become completely self-involved and indifferent to other people’s pain. Coming to these discussion boards and feeling the love and support running among all these people here makes me want to become better and stronger.
all my love,
mDear Mech Warrior, I would just like to say that many more people here have had successful stent replacements that brought them years of life and that unfortunately
your Mother’s CC was perhaps very advanced when she was diagnosed. My husband had stents for 5 years. We have Bob here who is in his 14th year. Margaret’s husband had almost 4 years. Even though many patients do experience some of the same symptoms that does not necessarily mean they are near death. We have also had many who had swollen feet and chest and Meds helped them. Like we say, we are not born with expiration dates. I also believe that a Patient and a Care Taker just seem to get a feeling when the time is near, somehow there is divine intervention and then it becomes hopefully a Peaceful Journey.Dear Maria,
My mother was 62 and she was diagnosed with CC 3 months ago. She passed away Nov 20, 2011.
Her bilrubin levels went up to 33 and they put a liver drain which caused it to drop down to about 3 or so. She had 2 stents installed.. one in duodenum and other in colon.
From what you’re describing of her situation, her feet being swollen and lethargy/ lack of movement as well as no appetite.. I hate to be the bearer of bad news but she most likely is in her last weeks if not less.
As far as exact dates.. only God knows when He has set her time to end in this world but like I said.. I just went thru it with her and was by her side the entire 3 months. I know every step that occurred day by day. From all you’re describing, she’s going to be passing away.. Im Sorry.
The best thing you can do right now is spend every moment possible with her. Trust me these days and companionship will mean more to her than anything thru out her life. Tough days are ahead and you have to just bare with them. Just keep her pain meds regular and if all goes well.. she’ll pass away without too much main in the end.
I wish I could give you false hope but the truth of it is.. false hope sux because when you think everything will be fine then you take on life as normal.. and when the day comes.. you will regret it. So go spend time with her.
Adam
Thank you, Cathy and Betsy, I hope you guys remain cancer free for ever and a source of inspiration for everyone else! Gavin, thank you for your advice. I will ask the doctor about all these.
The stent has extremely negative connotations for us, as my mum had an initial misdiagnosis as Stage 4 and had a metallic stent placed because of that. I suspect that the doctors used a much more archaic method than ERCP – it wasn’t through the mouth and it was extremely painful. The surgeon that decided to operate on her described the stent as “giving up”, as for him the case was oberable – and indeed it was.
I’ll keep your words in my mind and heart while dealing with this. I know doctors and the rest of my family think it’s lost cause but I do believe that this is not the end yet.
My warmest wishes to all the people on this forum!
maria
MK-I am a CC survivor and for cancer free for 2 years. I was diagnosed in July 2008 and had my first transplant May 2009, in that time I had 9 ERCP’s. I had wonderful doctors who listenned to my physical symptons, such as itchy feet and knew it was time for a stent change. I had 3 stent changes in a 10 day period one time, they gunk and clog up easily.
Be safe on your trip and lots of prayers for your mom and you.
CathyHi MK,
While I am cancer free for now, I have used lasix for ascites and ursodiol (bile thinner) which worked quit well. I had some fluid drained off my abdomen but the medications were very effective and gave me pretty quick relief. I have had as many as 3 external drainage bags to manage leaky bile duct. Overall, the drains really improve my quality of life. To reduce the risk of infection, I am on a prophylactic dose of zithromycin. The drains need to be changed about every 5-6 weeks. Drains have been in over 2 years now.Hope your mom gets much needed relief soon.
Betsy
MK…have a safe trip. Also I wanted to mention that it may help your Mom to have her feet elevated as much as possible to help reduce the swelling in her feet. Others also have been prescribed diuretics. You might want to inquire whether this is appropriate for your Mom also.
Know that a tidal wave of support is heading your way.
All my best wishes,
MarionHi MK,
My dad had a stent inserted after his diagnosis to deal with his jaundice. As the others have said, this will allow the bile to start flowing again and in my dads case, he felt tons better once the stent was in and working as it should. He had a metal stent inserted instead of a plastic one, do you know what type your mum is getting?
I find it strange and wrong that someone would say to you that having a stent placed means practically giving up. Was this your mums doctor that said that? When my dads GI specialist told us about stents and how they work etc, he most certainly did not say anything like that! as the others have said, there are many benefits of having the stent and I know my dad would agree with them on that!
My dad did also have PDT with his stent, and if you want any more info on my dads experiences with that please just ask and I will help if you can. Maybe it is something that you could discuss with your mums doctor. I sure hope that your mum can get some help here and I know it must be so tough you not being there with her right now.
My best wishes to you and your mum,
Gavin
Lainy, I also don’t understand why they have to wait for a week – being so far away makes everything so much worse…
And yes, my mum’s constantly tired and sleepy and has no appetite. I know these are all signs of the endgame, but she also just had about 2 litres of fluid removed from her lungs and she currently has her ducts blocked, so I pray and hope that exhaustion is a result of all these…One thing I’ve learnt from the whole experience is how resilient the human body is…
I’m going home on Wednesday to be with her while she has her stent placed and hope that I will see her recovering after that…
Again, thank you all for sharing! Yesterday the prospect of a stent sounded so awful, today it sounds like a saviour!
My best wishes to all!
mMK, I don’t know what your Mum’s friend does but stents are used so that the bile can flow freely. With the free flow of course the itching and discomfort should stop.
What I don’t understnd is why they said to wait a week. Never heard of that before. Just wondering if it is possible for you to get another opinion? Is Mum sleeping more and eating less? A lot less energy? Again these can just be signs from the blocked ducts as well. Thinking of you across the pond!MK,In Sept.my husband’s bilirubin was 28, it is now 1.He started of with three stents.They were changed five weeks later.When they changed the stents, they were able to increase the size of the stents so now he has to have them replaced every 8-9 weeks. THe stents have helped tremendously. They are not a sign of giving up! They put the stents in through a procedure called an ERCP where they go in through the mouth and down your throat and eventually in to the duct area. I was told they put dye in to see the blockage, then inflate a small balloon and then slip the stents in. I think it usually takes about an hour, but my husband’s first one took 3 hours because the tumor had blocked several ducts and it took alot more time. They usually give a local anesthetic, but last time they knocked him out completely because the local doesn’t work very well on him. The difference I have been told between metal and plastic stents is the plastic stents need to be changed and the metal ones are permanent and don’t get as gunky. If you have metal stents, I was told that you can’t do radiation.My husband is also on ursodiol which is a bile thinner to help the stents drain better. My husband is also on the same chemo as your mom.Hope this helps.
Thank you all for your responses. Lainy and Jim, your stories are indeed inspirational. I did also read Margaret’s posts that have given me hope. But the thing is that no one else does.
The update is that the doctors sent my mum home, cos they think that the current problem is not “mature enough” for a stent – I don’t understand what this means, really. She will go back in a week’s time to have a stent placed.
But I just talked to my mum’s best friend and she said that these are just ways to lessen her pain and we are just counting weeks. Her feet are also extremely swollen, which from other posts seems to be a symptom of the final stages.
I can’t help but thinking that this is the end – but then again my mum’s 59 and has been so strong until now that I am not ready to let go yet…
I had three stents placed a month prior to a resection. They all disappeared following the surgery. That was in April of 2009. So, clearly stent placement is not a sign of giving up. In my case, it was to get bilirubin levels to an acceptable range prior to surgery. They also caused the awful itching to go away. Both effects were nice indeed!
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