positivity
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Paulsgirl,
Good luck with your surgery. As you will find some CC patients found their tumor by chance in that another health condition prompted further investigation into this diagnosis.I don’t understand what you meant by Xeloda is given if the chemo does not work. Xeloda is also chemo and another option oncologists suggest over gemzar/cis. Perhaps you meant if the other chemo of Gemzar does not work then they use another chemo agent of Xeloda.
How long do you have to be on chemo? Did they suggest a break?
Dogs are a great support!!
Alikemal,
Sorry to hear about the passing of your mom, and I know you were very passionate about helping her. The most important is the entire family was together to offer support. It is unfortunate, not just in Turkey but the U.S. also where the standard treatment is limited. Hopefully, we see more clinical trials for CC also. This is a complex disease and it starts with the research which needs to gradually shift from only chemotherapy options.Thanks so much for joining the forum and sharing your experience. She has an amazing son who cared. Continue to share your story with others.
Carole,
This is the place to share and be emotionally free as this is a very difficult experience in life. I am glad for this forum and for all the people who participate. You have done an incredible job by helping and sharing! It is a heartbreaking experience to see a close family member to get weaker, but remember you are present and helping, that’s what counts! Also, remember the poor prognosis in the beginning, but he outlived it.I started with the battle of chemo side effects and hope one day this is not the standard first choice in treatment. It’s interesting his RBC and WBC was not impacted, since that is a prime concern with chemo. Have you gone to another doctor? I wonder about pain. Does he do anything about this? Have you tried Cannabis oil? It seems if his blood count is normal, there should be something left to be done. (my opinion, not a medical professional)
Regardless, take one day at a time and grieving is different for everyone, and maybe the kids need space to absorb everything. (not knowing nature of relationships) Maybe you can get advice from a children’s therapist on how to explain and work with your 5 year old.
This is always the difficult part in being here. I have read her posts and may she be in peace.
It also amazes me of the community who tries so hard to make a difference and eventually hope and promise for change. Thank you to everyone!Hello Kathleen,
Thank you for joining our forum. The courage to take control, ask questions, connect, and research are very important. Can you give more details as far as size of bile duct tumor? Was this diagnosis after an ERCP biopsy or by another means? How soon after diagnosis did you start gem/cis? Were you in a lot of pain? Did your oncologist give you a chance to think about the treatment plan or did he/she urge to get it as soon as possible?
Sorry so many questions, it’s always nice to know the details. I am realizing during my journey that each individual should be looked at differently as far as treatment plan, age, and other concurrent health conditions. There will be several who will respond to your post and provide great help.
Meanwhile do a search on Gem/Cis to get an idea on other individual’s experience.Thanks for sharing Karen! This is important information as most people may have a full time job in which financially they cannot sacrifice if taking care of a family member with cancer. It is important to have options of reducing hours, taking time off as needed, and a leave of absence (although not paid, at least guaranteed employment upon return). If possible, depending on job duties, companies can offer telecommuting, although I don’t see that as an option. Also, jobs should have the option of changing a position from full time to part time without the employee being risked of losing job.
There seem to be companies who are still rigid in that the position is only full time or don’t offer telecommute. Basically if you want to go full time to part time, you will lose the job.
Thank you Lisa for joining this forum and sharing your story. It takes strength and determination! I was in the same situation with my mom, and the intensity of emotions and panic was high. Immediately, I came to a place to help her manage this condition. Of course it’s a challenge, but that’s no excuse to not participate or give up. I consider each day and month that goes by as a success. It has gotten to a point of not thinking years, but a month and day at a time. No one can predict the future, but the only thing you can control is participate and be present to ensure she gets the best care possible.
Try to get 2-3 opinions on treatment plans and go with the best you feel through research and your mom’s overall health. Don’t overlook palliative care starting now. You can do a search on our forum. Offer her great support, nutrition, and make sure she is reminded of what she loves in life or makes her happy.
Keep us posted!
Thank you for sharing your concern on this forum. You are taking steps to ensure your father gets the best treatment. I cannot share our experience with Xeloda, but it was offered as the first treatment choice by one oncologist and he said there is no guarantee that it would work. You are absolutely right to be concerned about low platelets, and what is his hemoglobin level and is he anemic? As we know through studies, chemotherapy lowers patients platelets and red blood cells, so it’s a risk one must consider. That particular doctor did not give statistical information, but offered an option of blood transfusions if my mom’s blood count went low, which was already low. We did not go with the treatment for this reason. Again, it is individual choice. My journey has taught me not to go with statistics as difficult as that may be. This is a mystery condition and hard to figure out. Do a search on our forum for Xeloda, there could be promising results. Did the doctor suggest platelet transfusion if it gets too low? How low is it?
Again, thanks so much for sharing your experience.
Thanks Karen for sharing. This is helpful. It seems that way in that individuals are different when getting a CC diagnosis and different in how they respond to treatment. It’s almost like the medical team has to dissect each patient which is more time consuming and that’s why there is one standard treatment to recommend for all.
Thank you so much for your feedback and support. I am glad to be part of this board, and I highly believe, as Karen has stated that CC is hard to figure out. I feel doctors are learning also by each patient they treat.
My mom had a serious chronic anemia before diagnosis, and this was a deterrent to moving forward with chemo, as chemo would make her more anemic. I have not seen another patient who had chronic anemia pre-diagnosis, so again each individual is unique. I can’t imagine with someone who already has low platelets and hemoglobin and RBC that chemo would help them. So again we were in a bind, and really nothing to do, but support. Her CC is not operable and stable at this time. This is still a challenge as we have to keep her energy level up and manage the anemia. Individuals who are dealing with several medical issues concurrently can be harder.
Karen, is high inflammation a typical symptom for all individuals with CC?
Thanks for the information. It is tough, but I feel that this is the only thing I could offer my mom at this point. She is not getting help from a palliative team, but from family. Also, getting stents is part of palliative care and she has it.
My mom was not a surgery candidate also, and I would have been highly hesitant if she was able to get surgery. It is very involved and felt it would put her at a high risk with no guarantees.
Your other question is a very good one. I asked myself the same question as doctors made it seem that it was a quick moving, aggressive condition which needs treatment right away. I cannot answer as a medical professional, but believe it varies from person to person. The same with treatment which varies from individual to individual, what works for one person may not do any good for another.Thanks for joining the board, and hopefully you get the support needed to move forward.
Thank you so much for sharing. It takes courage, and hopefully more people and caretakers get on this site.
After experiencing this difficult time in my life, I consider every month that passes as a success. I had to find the strength to help my mom and others in the process. Now 6 months later, I am so glad to be part of this community and I also took the step to be courageous during a challenging time.
I am extremely grateful to celebrate 6 months since diagnosis, which in reality after learning about this condition and backtracking into medical records, my mom has actually had it for 3 years. This is with the possibility of it getting worse or becoming more symptomatic over time. We made difficult decisions, and I had to accept my decision with whatever outcome and keeping positive. You can imagine how hard that would be. I say “we” as when you are an advocate or close family member you put yourself through the experience as if it is “you”.
Life is unpredictable, but I will always know in my heart and mind, that I stepped up and helped as much as possible and moved forward wisely with love and kindness.
