So as some of you know, I don't frequent this site often. But I have found some comfort in it as I have continued to struggle lately with the loss of my mother. I am coming up on 4 months since she has passed, and one year since the day we found out she had cancer, and it just doesn't seem to get any easier.

I come on here sometimes to read stories, and to find how others are dealing with the loss of their loved ones, and I just cry. Your stories are amazing, and as diffficult if not more than mine, and I still find myself feeling so alone. My mom passed at the young age of 54, and I feel like she had so much life left.

My struggles seem endless these days, as sometimes I don't even know where to turn. I am at a loss for words sometimes, as I just can't seem to figure out what the next step.

My sister turned 30 this year, and I will soon turn 27. And I sometimes I can't bare the idea of life without my mom or all that she will miss. It hurts so much sometimes its hard to breathe. And then there is my Dad. He and my mom were married 33 years, and to wake up every day, without her by his side is even harder than any of us imagined. Sometimes I don't know how to help him cope or how to make it easier, when I can't even make it easier for myself. I am so scared of moving forward without her and can't bare the thought of the moments that will be some of the most important days of my life and how she won't be there to guide me through it all.

Sometimes I feel my days are filled more and more with sadness and less with the happy life I am sure she would want me to live. I get up everyday, I go to work, and I do what I should, but I admit that I feel like there is not always much emotion behind it all and that sometimes I think about wanting to stay in bed all day.

Does it ever feel less numb?

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(4 replies, posted in In Remembrance)

Sharon

I read your message tonight as I came to this site struggling to deal with my own mother's passing and your message instantly brought me to tears. It has been just short of 3 months since my mom lost her battle to this disease and I miss her so much everyday. As we try to move forward and figure out our next step, I too find myself saying this is how we are going to do something a certain way because thats how Mom would have done it, and for just a moment it brings me a smile. My mom was my world, as much as she was my sister and my dad's world and I always find myself still wishing she was here...

Jenna

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(6 replies, posted in In Remembrance)

Well I had hoped the next time I visited this site I would bring better news. But it saddens me to tell you all of different news today. My heart is broken and I am still struggling to deal with the news myself.

My mom, passed away, Monday, October 24th with my Dad, Sister, Grandmother and myself by her side. She fought long and hard, but her body just couldn't battle the disease.  We spent a lot of time together, talking and sharing memories before she passed.

I wish things were different, but know she is no longer suffering now. Thank you all for the support you have given in me stumbling across this blog. It has been helpful and encouraging as we had tried to battle this disease together as a family. Thanks again

Marion-

We have not officially been told this is bone metastasis as of yet. One radiologist thought he might have seen something on her CT in September at the level of T6, but her oncologist was a little " unsure" of that, and was choosing to watch this spot for now. The rib disease we found, we are unsure of how long that has been there. It is possible it has always been there, as my mom has had some back pain for years, or it's possible it is due to the cancer. We wait to hear from her oncologist today, and see what they might recommend next. We hope to head back to Mayo, run some additional tests and begin some treatment. I will be asking about radiation, as this is something I have been researching as well.

Thank you for your advice and kind words. I admit that some days it is tough to stay strong and I just want to cry. But  even when I am feeling a little down, my mom reminds me that she isn't done fighting yet, and so neither are we. I trust in God that he knows what is best and he is watching out for us the best he can. I believe he will find a way to help us all through this situation whatever the outcome might be. And my faith in my mother's doctors remains strong, as they have been two of the biggest fighters in her corner. We trust they all know what is best for my mom. Thanks again

Thank you all so much for the kind words. We are remaining as positive as we can and keep pushing forward. Mom is experiencing a lot of back pain, which we discovered is from some degenerative rib disease ( possibly from the cancer). She is in the hospital again today after being home for a few days. Getting some stronger pain meds and trying to get things back on track. We are seeing an increase in her alk phos however as time goes on. Hoping we can figure out something to get her back on track and into a clinical trial.

Thank you all for your kind words and support! It truthfully helps us get through some difficult days.

Cathy- thank you for your post... and Congrats on being a survivor. We will remain positive and hope that a clinical trial will also help our mom being a CC survivor. Can I ask..what clinical trial seemed to work for you?

Peggy- Best of luck to you on your journey with your husband. This is the ultimate roller coaster ride, and you have just begun. Stay strong, and try to stay positive..attitude is half of the battle, and I believe it is positive attitude that has gotten us this far with my Mom so far. We will remain positive and continue to fight until we have no fight left. Please keep us posted on your husbands care. And best of luck to you and your family.

Update on my mom:

Well we have had a rough couple of days. Mom wasn't feeling well late Tuesday night, so she went into the doctor Monday and they ran some labs, which landed her in the hospital. It appears her potassium and her albumin were low, so they wanted to put her in observation to give her some fluids and give her some zophran to help with the nausea she has been having. To date, mom had lost about 50 pounds on this journey, but after almost a week of NO eating, we were suprised to find her up 10 pounds. It apepars she is taking in some fluid in her legs, and I am now concerned she has some ascites in her belly. We wait this morning for a new report from our doctor back home and the oncologist at Mayo. We might be heading to Mayo to figure out what's going on and see if we need to start some treatment instead of waiting for a clinical trial.

This has been some difficult news to swallow. I fear that this is just the beginning of things taking a turn, and getting worse. My mom is only 54 years old, with two daughters who are not yet married or have any children. I am scared she will miss out on all that life has to offer not only her but us. Please pray for my mom as we continue to wait for answers and hope to find something that will make her feel better soon. Thanks

Well I am back again for another update. We received some disappointing news yesterday. Mom was at Mayo for her first rounds of baseline tests before starting the trial, and after the first day of tests her oncologist called to have her come in to see him. We were saddened to learn that one of her labs, her alk. phos, was a mere 5 points to high for her start her trial.

So it's back to square one we go. We are back on the waiting lists again for new trials, and hoping we get a call soon. For now, we wait and we pray that the answers we need will come soon. Thanks for all of your kind words and support.

http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=1

I think this is the trial she is under...now to research..what to expect, what works, and hope find answers.

Well we got a phone call last night from Mayo, asking for my Mom to be there this morning to get started on the preliminary work for her clinical trial. She is having lots of testing over the next few days,  CT scans, lab work, EKG, echo, and will meet with her oncologist on Thursday this week. If all lights are green, we will get the go ahead, and she will start her trial on Monday next week. I was unable to be with her for this appointment this week, but my understanding from what I have been able to get from my mother and sister so far, is she will be on an Oral chemo, called AT-406. She takes this on Days 1-5, and then is able to return home for a bit. She will return to mayo each week, for lab work and to get her drugs to take home, as long as labs go well. She will have a CT scan after two rounds of this drug, I believe in about 2 months time. I am trying to find out as much inforamtion as I can about this study so I know more of what to expect. I will update you all as I learn more information.

Wow!

Thank you all for your warm welcome and responses. We have been overwhelmed with this process, as many of you have already experience, so every bit of information is so helpful and greatly appreciated.

Marions-Thank you for your kind words and the information you have passed along. We are very excited about the opportunity to participate in a clinical trial, not only to help my mom, but in the hopes of helping many, many others battling this disease. Mom signed up on day one of being seen at Mayo to be involved in research, because she too feels everyone deserves a fighting chance. And if there is any way we can help someone else succeed then we have done our part. I am thankful to know more about the process of clinical trials and what to expect. We too hope we can add the information with our experiences and help someone else in need. Thanks again for your help

Kathyb-  We do not know what clinical trial she will be accepted into as of yet. Doctors said she qualifies for a couple of different trials, but we will not know more until they review all of her information and tests more thoroughly. In addition, they have said she needs to be chemotheray "free" for a minimum of 4 weeks before starting a trial. She received her last chemo treatment just two weeks ago, so we have a little bit of wait to go before we can know more information. Thank you for the information regarding the trial you are on. If you don't mind me asking, how has your experience with this trial been so far? Have the side effects been manageable? And how do they monitor your progress? Any information you could pass along would be greatly beneficial to us as we are trying to learn anything we can about the options available for my mom. I hope to find out soon which trial will be selected for her so I can update you all.  We have been very fortunate with my mothers' health so far, as time and time again she seems to prove them wrong, with remarkable lab results each time, and minimal, manageable side effects. She has the attitude of a saint...and sometimes I don't know how she puts on a smile, but cancer is not going to get her down. Thank you again for your information as well. If I find out anything about the clinical trial soon, I will be sure to update you!

Gavin-
Thank you to you as well for your kind words and information. I have been researching daily, through the links you have all provided to learn as much information as I possibly can. I understand exactly how you have felt, as we have felt some of the same emotions as we have worked through this dreadful disease process. It is the most difficult thing I can have ever imagined, but we are so thankful and appreciative of the support out there from the people who truthfully understand. It has been a blessing in disguise to be able to reach out to others. I too am glad to hear you have the right attitude and continue the fight like us. It helps make each day just a little bit easier or more bearable.  Doctors have not said much yet about what type of treatments they recommend, as they first felt it was important to start with chemotherapy. We now wait to start a clinical trial and see where that brings us. We have been very fortunate in the fact, that her labs have remained normal, and she has yet to experience any signs of jaundice or itching, or any of the expected symptoms so far. Thank you for your information. I know I won't find all the answers I want, but whats important is together all of us fighting this disease can help each other find pathways to success. I will be back often to update you all as we know more about her care.

Thanks again to all who have responded. Your information is greatly appreciated and helpful as we seach for more answers. Thanks

Hi Lainy

Thank you for your post! I have been diving into the trials and researching like crazy. It's so wonderful to have so many people I can reach out to. Cancer changes your life in more ways than I ever understood. It can be overwhelming at times, but we just keep pushing through. We are hopeful that this next journey will lead us to the right path, or at least the start to the right path. Thanks for your help! I will be sure to keep you all posted as we beging this next stage

Hello to all those battling cancer out there

This is not my first visit to these discussion boards, but this is my very first post and way of reaching out. In February of this year, my mother, was diagnosed with Stage IV Metatsatic Liver cancer (primary unknown). After rounds of tests, bloodwork and the beginning of treatments, we have finally been able to focus in on the true primary, which has been determind to be bile ducts (or as you all know,  Cholangiocarcinoma). It has been a difficult diagnosis to swallow, but my mother has remained adamant in her fight and we continue to stand by her...as we will not give up.

I am reaching out to those fighting this disease, whether you are fighting it yourself, or fighting it along with your family members with this disease. We have had many ups and downs along this road, and have recently been faced with yet another bump in our road.

My mothers first treatment began just weeks after being diagnosed with rounds of chemo every 3 weeks, of Taxol and Carboplatin. We followed her progress with CT scans after every 3rd treamtent, and initially were pleasantly surprised to find some shinkage and progess. As time progressed and chemo treaments moved on however, we were soon faced with a little disappointment to find the chemo treament had stopped working and a few spots had come back.

And so a new path began, mom had a port placed and began new chemotherapy treaments, with Gemzar and Oxalitplatin.  And as before, we have just recently checked her progress with another CT scan.

Unfortunately this new chemotherapy is not taking charge, and some spots have again increased in size. While the news is more difficult each time, we again, continue to fight and pray that her doctors know what is best. We are being treated at Mayo hospital in Rochester, and couldn't be more pleased with the care so far. Doctors are recommending starting her on a clinical trial after a couple weeks break from her chemotherapy. And so now the wait begins. The wait for the chemo to get out of her system, and the wait to find out which clinical trial will suit her best to try and kick this thing.

I research daily, ask questions daily, and sometimes I don't know where to turn. Is there anyone out there who can help me learn more about clinical trials that are best for her cancer, or those who have seen success? I don't even know where to begin, but need to do my part.

Thank you all for your time reading my very long post....

A concerned daughter