Urachal Cancer Survivor

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RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by vtoole on Mon Jul 18, 2016 03:10 PM

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On Jul 18, 2016 2:04 PM pallizzie wrote:

I resent this article - the reason why we are hear is to learn of how to cope with this disease and to help eachother. Suicide is not the answer. You will not get to Heaven by taking your life. You learn to deal with things and accept that this is what the Lord has chosen for me. Maybe I can help others on the way. I try to keep upbeat and positive but the first time I read this I was depressed the rest of the day. Now I see you have posted it again. please don't continue to put this on this site. It doesn't belong here.

I agree wholeheartedly! This is not acceptable on this site!!!!! Your posts have been removed before. I will see to it that you get removed again!!! We are all here sharing stories that enlighten all of us and give us options that we present to our doctors. Since this is an extremely rare (less than 2% of the population) there is NO money being spent on its research as "the powers that be" feel it not lucrative to pursue studies to benefit us!!!! So, I don't know what you're taking about. This blog is for those unfortunate people and their caregivers to exchange information as to other options that are out there. Each of us seems to have some similar treatments, others are asking for advice, and yet others are giving advice from their different treatment experiences. It's an educational forum as well as encouraging. It is free choice that allows each of us to make our decisions about living!!! And for some of us, living an extra week, day, hour, minute is a gift that we would do anything for! So, get off your high and mighty horse and this blog and spread your thoughts and bile elsewhere!!!

RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by julesgreenb on Wed Jul 20, 2016 03:10 PM

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Hello Greygay, I hear where you are coming from. I too am not Christian, don't believe in hell, have spoken to my home nurse about the new doc assisted dying law here in Ontario, have attended a full day workshop on end of life options and issues, and spent a year in the care of an naturopathic oncologist in which I took many of the suppliments you listed including injecting myself with iscador. That said, i must also admit that seeing your post on death with dignity took me aback. It was not one of my good days when I saw your post. I had come looking for ideas, for hope, for personal sharing and support. I think I wouldn't mind posts of personal thoughts and feelings around end of life, I just don't want to be preached to on this forum. I know you mean really well but I'd be much more interested to hear your personal experienes and appoach to living as a fellow urachal cancer patient and yes that could include your thinking about your own death. You also have to understand that there are family members on this list who may be particularly sensitive to the death topic. I wish you all the best. Take good care, Julia

RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by vtoole on Wed Jul 20, 2016 04:36 PM

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Greygay...I had intended to reply to your more recent post earlier today, so some of what I have to say might mirror Julia's response. My first suggestion is that you look back on the posts over the past 12 months (more if you have the inclination) and see the types of sharing people have done. It would be helpful for you to, perhaps, tell your story: when were you first diagnosed, what types of surgeries, treatments, studies might have you participated in, where have you been treated, etc. These types of posts - which are very prevalent - give others: - information about options they might not have had, - questions/topics to ask their doctors, and - hope for survival -as several of the Urachal patients on this blog have survived upwards of 9+ years! This has been a blog of reality with hope. As Julia mentioned, there are many family members on this blog who may be having difficulty navigation and care taking - as well as the patients themselves- who are looking for something helpful or hopeful. Patients like you check this blog periodically - to check in - and a post like your previous ones may not be what the need at that particular time. Please be sensitive to all this patients and their families. Peace on your journey.

RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by pallizzie on Wed Jul 20, 2016 05:08 PM

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Well said~

RE: End Of Life Options / Death with Dignity / Physician Assisted Suicide

by StanToronto on Wed Jul 20, 2016 11:34 PM

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Right on, vtoole!

The stuff the posted by the Grey Gay guy is a real downer to read. :-(

irinotecan chemo

by xantherea on Fri Aug 05, 2016 01:22 AM

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My family and I are doing every thing we can to keep my father alive. My father wants to continue to live to enjoy his children and see the birth of his grandchildren and his other children get married.. Assisted suicide is not an option for us and I cried reading your post..

Moving on.. has anyone been treated with irinotecan chemo? My father's new regime will be irinotecan + avastin + something else i can't quite remember?

My father's oncologist said he didn't want to treat him because he has a stoma bag and he will have diarrhea and his magneisum is low and it will continue to be low.. we were unhappy with this, because you can boost his magnesium with an injection!! He said my dad should just enjoy the rest of his life!!!!! we ended up going to another oncologist and he was happy to do whatever he could to help..

My father was previously on oxaliplatin and because he was SO LOW on magnesium, he reacted pretty badly and the diarrhea was quite bad. I know one of the side effects of irinotecan is diarrhea, but has anyone not found themselves with this side effect?

RE: irinotecan chemo

by vtoole on Fri Aug 05, 2016 01:56 AM

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On Aug 05, 2016 1:22 AM xantherea wrote:

My family and I are doing every thing we can to keep my father alive. My father wants to continue to live to enjoy his children and see the birth of his grandchildren and his other children get married.. Assisted suicide is not an option for us and I cried reading your post..

Moving on.. has anyone been treated with irinotecan chemo? My father's new regime will be irinotecan + avastin + something else i can't quite remember?

My father's oncologist said he didn't want to treat him because he has a stoma bag and he will have diarrhea and his magneisum is low and it will continue to be low.. we were unhappy with this, because you can boost his magnesium with an injection!! He said my dad should just enjoy the rest of his life!!!!! we ended up going to another oncologist and he was happy to do whatever he could to help..

My father was previously on oxaliplatin and because he was SO LOW on magnesium, he reacted pretty badly and the diarrhea was quite bad. I know one of the side effects of irinotecan is diarrhea, but has anyone not found themselves with this side effect?

Hi Xantherea, Good to see you back on this blog. Sounds like you are a real advocate for your dad. The caretakers' role is so vital. I've been behind the scenes pushing for my husband 6 1/2 years! I have no experience with Irotecan. I have definitely heard of it and had asked my husband's doctor about the possibility of using it. My husband had Cisplatin as one of a combination of chemo regimen in '10. The side effect of that for him was permanent nerve damage to his hands and feet for which he mows takes Lyrica. My husband has been taking oral magnesium supplements for a number of years now as the many treatments lowered his magnesium count - most especially Vectibix. The extra magnesium actually had the side effect of giving loose bowels in his case. I guess everyone is different. I am glad you have a doctor willing to continue to try options to keep your dad going. Hopefully, he is able to enjoy all of you while on this journey, though some/many days fighting this disease can be unpleasant. Hugs to you, Vivian

cetuximab for urachal cancer mets?

by julesgreenb on Sat Aug 06, 2016 03:14 PM

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Hi all, After eight rounds of FOLFIRI it has stopped working and my tumours are once again growing and spreading. My oncologist is suggesting we try the next in line for colon cancer since my tumours have responded relatively well to the first two, FOLFOX and FOLFIRI. Cetuximab is not chemo per se but a targetted antibody, but it hasn't been found to be effective if the KRAS gene has mutated, so my tissue is currently being analyzed for that. On top of this my oncologist will have to get permission to prescribe it off label since it is a colon cancer treatment, not bladder. I'm wondering if anyone in this forum has tried this treatment. Hoping people are doing well. Julia

RE: cetuximab for urachal cancer mets?

by vtoole on Sat Aug 06, 2016 11:36 PM

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On Aug 06, 2016 3:14 PM julesgreenb wrote:

Hi all, After eight rounds of FOLFIRI it has stopped working and my tumours are once again growing and spreading. My oncologist is suggesting we try the next in line for colon cancer since my tumours have responded relatively well to the first two, FOLFOX and FOLFIRI. Cetuximab is not chemo per se but a targetted antibody, but it hasn't been found to be effective if the KRAS gene has mutated, so my tissue is currently being analyzed for that. On top of this my oncologist will have to get permission to prescribe it off label since it is a colon cancer treatment, not bladder. I'm wondering if anyone in this forum has tried this treatment. Hoping people are doing well. Julia
Hi Julia, good to see you back on here. Not good about your latest treatment results... So, cetuximab is a cousin to Panitumumab (Vectibix) which my husband was given after 2 rounds of "traditional" chemo back in 2010 and was kept on it for almost 2 years after his 6 rounds of chemo. It has something to do with EFGR being present in the tissue, as you say, and can work toward slowing the growth of the tumors. In his case, he received it every 3 weeks via infusion and his doctor felt as thoughtful it was the "trick up his sleeve" that may very well have inhibited/slowed the growth/metastasis of 2 indeterminate punctuate nodules they still saw after his chemo and his vast improvement after chemo/Vectibix combo. You mentioned your tissue was being tested for KRAS gene. Marty's doc never did that particular test and probably should have. That sounds like a pretty great decision your doc is making. Sounds like you are in good hands. Continued positive thoughts and energy being sent your way. Big hugs, Vivian

43 yo with metastatic urachal adenocarcinoma

by dayhawk on Sun Aug 07, 2016 01:53 AM

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I was recently diagnosed with a midline bladder dome mass that looks like urachal adenocarcinoma, biopsy pending. It also looks like I have few small lung nodules and liver mets, with one liver metastasis that's a little larger. All this info was discovered 2 days ago on CT after few months of what seemed like clinical prostatitis, and I'm just feeling depressed and hopeless right now from most things I'm reading online. I can't sleep well and my appetite is really poor. Found this great discussion board to find some hope. Bad news is that I'm young, but I'm trying to think that because I'm young without comorbidities I can fight longer and harder. I have a family with young kids who I want to be with for as long as possible. If there are any encouraging anecdotes from someone who was in similar shoes, please please share.
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