Terminal Cancer & Clinical Trials For Treatment? - The Horse Forum

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post #1 of 17 Old 04-08-2010, 10:16 AM Thread Starter
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Unhappy Terminal Cancer & Clinical Trials For Treatment?

I'm looking for any encouraging stories of people who know someone who was diagnosed with terminal cancer and lived much longer than what the Doctors expected. Also looking to hear if any of them done clinical trials of new drugs and whether or not they helped?

My mom was diagnosed with ovarian cancer last April and had surgery to remove the cells. The surgery was considered a success and all follow up appointments and tests showed nothing. In February of this year, my mom found out that the cancer mysteriously returned and spread to the mucus lining of the abdominal wall. We were warned that the cancer was highly aggressive and that it doesn't usually respond to chemotherapy.

On Good Friday the Doctors told us that the cancer isn't responding to the chemotherapy after only two treatments, and while it hasn't spread any further in the last 2 months they will not be doing any additional treatments and will effectively let her die. That's news you never want to hear and I was the unfortunate one to have to tell my dad and sister as they were not present at the meeting.

The Doctors haven't given us any timelines, although the palliative care nurses are meeting with my mom today to help her understand the whole transition and what not. From speaking with the Doctors they don't want to give a timeline at all and from what I gather, the cancer hasn't spread to any of the vitals yet but it's only a matter of time until it gets to that point.

I was instructed by my best friend, who's actually an oncology nurse to get a second opinion on the treatment options. After discussing it with the family and explaining that the second opinion very well may have the same outcome as the first, my mom agreed to let me put in a request to have her transferred to one of the leading cancer centres in Canada.

We're just waiting for the transfer to go through and see if she's eligible for any of the clinical trials currently accepting patients. I figure as long as it hasn't spread to the vitals and she's willing to put up a fight, we don't have anything to lose. Right?

(I don't know if I'll be able to respond to this thread and/or certain replies because it's extremely hard for me at the moment, but I will read everything and sincerely appreciate any positive stories even if I don't acknowledge them. My friends are having a very difficult time trying to relate with me on this, so I figured I would try my luck with random strangers...)
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post #2 of 17 Old 04-08-2010, 10:34 AM
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My friend's dad was diagnosed with liver cancer which eventually moved to his throat and he had to have the lymph nodes in his throat removed(I believe he ended up having three types of cancer). He stopped the treatments because he didn't like how sick he was getting from them. The only thing he ever wanted to do was ride his bike and when he would get sick he couldn't so he went off the meds and chemo and stuff. The doctors gave him a few months without the meds.....he went for three YEARS (I to this day have no idea how he did it) he had the fight and the drive. If your mom is willing to put up a fight then tell her to make sure she gives it hell and be there to support her when she needs it. Im very sorry this happened to your mom....i wouldn't wish cancer on anybody. I lost a few of my family members and pets to it as well. Just remember you guys aren't alone. Hope everything goes well.

~ Hope is never light years away ~
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post #3 of 17 Old 04-08-2010, 11:14 AM
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Jinx, I am so sorry you have to go through this. *hugs* You are always welcome to post here, this is a very supportive group.
I think it is fantastic that she's been moved to a leading Cancer care centre - they will take good care of her, and that's the spot she'll likely get the best care. Discuss clinical trials and every option possible with the doctor. Some might not suggest clinical trials, so be sure to ask.
Regarding your friends, unfortunately this is a phase that you have to go through. A lot of people would have no idea what to do in your shoes, and so they really don't know how to act around you, or what to do to help you. It's normal, unfortunately. For this tough time, you need support - online groups are great, but they lack the whole "physical, being there literally" thing. Perhaps you can discuss support groups within the network of the new hospital?
You and your entire family are in my thoughts and prayers.


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post #4 of 17 Old 04-08-2010, 11:51 AM
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Quote:
Originally Posted by jinxremoving View Post
I'm looking for any encouraging stories of people who know someone who was diagnosed with terminal cancer and lived much longer than what the Doctors expected. Also looking to hear if any of them done clinical trials of new drugs and whether or not they helped?

My mom was diagnosed with ovarian cancer last April and had surgery to remove the cells. The surgery was considered a success and all follow up appointments and tests showed nothing. In February of this year, my mom found out that the cancer mysteriously returned and spread to the mucus lining of the abdominal wall. We were warned that the cancer was highly aggressive and that it doesn't usually respond to chemotherapy.

On Good Friday the Doctors told us that the cancer isn't responding to the chemotherapy after only two treatments, and while it hasn't spread any further in the last 2 months they will not be doing any additional treatments and will effectively let her die. That's news you never want to hear and I was the unfortunate one to have to tell my dad and sister as they were not present at the meeting.

The Doctors haven't given us any timelines, although the palliative care nurses are meeting with my mom today to help her understand the whole transition and what not. From speaking with the Doctors they don't want to give a timeline at all and from what I gather, the cancer hasn't spread to any of the vitals yet but it's only a matter of time until it gets to that point.

I was instructed by my best friend, who's actually an oncology nurse to get a second opinion on the treatment options. After discussing it with the family and explaining that the second opinion very well may have the same outcome as the first, my mom agreed to let me put in a request to have her transferred to one of the leading cancer centres in Canada.

We're just waiting for the transfer to go through and see if she's eligible for any of the clinical trials currently accepting patients. I figure as long as it hasn't spread to the vitals and she's willing to put up a fight, we don't have anything to lose. Right?

(I don't know if I'll be able to respond to this thread and/or certain replies because it's extremely hard for me at the moment, but I will read everything and sincerely appreciate any positive stories even if I don't acknowledge them. My friends are having a very difficult time trying to relate with me on this, so I figured I would try my luck with random strangers...)
I am so sorry to hear what you are going through. Some great posts so far, so I hope you can find some comfort with what has been said. My father was diagnosed with stage 4 cancer in July of last year(brain tumor). He was given 2-3 months to live, he is still alive today and doing everything on his own(except driving, due to risk of seizures). He underwent some oral chemo and is doing pretty good.

There is a well known writer Randy Pausch who actually passed away just last year. He was diagnosed with pancreatic cancer and was given a few weeks to live. He tried a few different trial drugs and underwent some chemo and he ended up living another year and a half before passing. Fantastic character who had an amazing outlook on life. He wrote a book which I always post about on here, that I recommend everyone to read.

My mother was also diagnosed with a brain tumor and MS. Her tumor(so far) has been a slower growing one, so we haven't done any treatments yet, tho we are getting to the point where we are going to have to in the near future.

Keep your chin up, it will give you, your family and your mom strength. Feel free to pm me or anyone on the forum to vent. We are all here for yea.
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post #5 of 17 Old 04-08-2010, 11:58 AM
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Sorry to hear about your situation Jinx.

A positive story for you. My mum was diagnosed with cervical cancer 10 years ago. It was quite aggressive and spread quite rapidly through a lot of her abdomen. She underwent major surgery with only a 50% chance of success, she was in successful 50%. We then found out that less than 20% of patients having undergone that surgery, with that aggressive cancer survived longer than 5 years. Well here we are 10 years later and she hasn't had any recurrances (touch wood of course!).

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post #6 of 17 Old 04-29-2010, 05:34 PM Thread Starter
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(Warning: Going on little sleep, so this post might not make a lot of sense..)

I just wanted to thank everyone for their stories and encouragement, sorry I never got around to it until now. Unfortunately my mom passed away peacefully in her sleep last night and there have been a few more miracles worth mentioning!

A week ago my mother slipped into a coma and they didn't expect her to make it to the morning. The doctors thought the cancer spread to the vitals and it was shutting everything down. We had the "last rights" where the priests come and they do their thing. It was extremely heartbreaking, but to our amazement about 10 hours later my mom woke up! The doctors were shocked and a few of the nurses were crying, it was something to see.

Over the weekend we had my moms 61st birthday party since all of her family was in town. The doctors were so happy that she pulled through the coma to experience it, but her health was starting to deteriorate again and we were told she would only have a few days to live, if we're lucky.

On a side-note my sister was pregnant and she was not expecting the baby until the 2nd week of May. I wanted nothing more than for my mom to see and hold the baby, and I'm happy to say it happened! On April 26th my sisters "plug" went and then her water went on April 27th around 4am. She ended up having the baby around 6am.

April 27 is my mom's actual birthday which made the whole event even more surreal and after a lot of politics between the children's hospital and my moms hospital they agreed to bring the baby over to see my mom. The baby wasn't even 4 HOURS old and they made this huge exception against their protocol so that my mom could see it. It was the most amazing thing ever to see the look on my moms face once the baby was brought into her room and she even got to hold it! (Pictures will be forthcoming.)

Later that night my mom started to slip back into a coma, and she remained there until last night. Her breathing was extremely shallow and filled with fluid, so it sounded like she was basically drowning with a loud gurgling noise. It was easily the most heartbreaking thing to see through, just spending hours waiting for someone to die.

There was a lot of heartache here, but given all the miracles that happened with the baby being born early - on my mom's birthday - and my mom beating the odds, us being told she wouldn't make it through the night on at least 3 or 4 occasions... I feel extremely fortunate to have it end this way. I'll take my mom at 61 where I got to tell her everything I wanted to, then suddenly lose her at 75 in a horrific car accident if that makes sense.

Just got back from the funeral home where we had to make arrangements and what not. My mom has HUNDREDS of cards, she was extremely loved and well known so we're having a huge service. I can't believe I'm actually happy this is over and she's no longer suffering. Sigh!

RIP Mom (Rhoda Cabrini - April 27, 1949 to April 28, 2010.) I love you. <3
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post #7 of 17 Old 04-29-2010, 09:12 PM
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I am so sorry to hear of your loss. But I'm glad she went peacefully and got to experience some wonderful things before she went.

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post #8 of 17 Old 04-29-2010, 11:08 PM
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I'm sorry to hear about your mom *hugs*. But I'm happy to see that you are looking at the positives... We are here for you if you need us. I'm glad that you will have so much support nearby though.

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post #9 of 17 Old 04-30-2010, 12:15 AM
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Best wishes for you and your family.

Personally, when I think cancer inspiration Lance Armstrong always pops-up. I don't believe he was ever terminal, but it is the principle of the matter.

Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising which tempt you to believe that your critics are right. To map out a course of action and follow it to an end requires courage.
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post #10 of 17 Old 04-30-2010, 11:39 AM
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Oh my... I'm sorry for your loss . You're in my thoughts, whole the family.

Anyways, life offers amazing things sometimes. I'm pretty sure that's the way that most of people would want to go. I'm glad she managed to see her grandchild, hopefully it made her a bit happier.

"On hyviä vuosia, kauniita muistoja, mutta kuitenkaan, en saata unohtaa,
Että koskaan en ole yksin, varjo seuraa onneain.
Vaikka myrsky hetkeksi tyyntyykin, varjo seuraa onneain.
Ja pian taas uusin hönkäyksin, varjo seuraa onneain.
Hei tuu mun luo, pieneksi hetkeksi. Puhutaan, varjoni, valkoiseksi enkeliksi."

Pelle Miljoona Oy - Varjo seuraa onneain

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