milenzz
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Hello,
I noticed that no one has responded, so I figure I’d put my two cents in. I’m not sure how common this may be, but my mother after doing so well on chemo and then taking a break developed small tumours on her lungs as a result of CC. The doctors did warn us that this could potentially happen (so I’m assuming it is common) and low and behold they were right.
Unfortunatley my mother passed a month in a half later (not to discourage you or your wife) so I’m not sure what treatments are being used to target lung metastasis. My mom was originally on gem/cis and did really well, she took a two month break and that is when the lung metastasis happened. The doctor recommended she start Xeloda as he felt her body was to weak to withstand anymore chemotherapy and that it would decrease her quality of life. The xeloda proved to not work on my mom as she stopped taking it about a month before she passed (it had some bad side effects for her and ultimatley did nothing to the cancer).
Please let me know if you have any additional questions. I would be more than happy to help as much as I can
Milena
Dear Kristin,
I want you to know that you are not alone in how you feel and the fears,anxieties, and helplessness you may feel. Both of my parents have passed away, one from a tragic car accident and the other from this disease. I recently lost my mom in December to CC and so I understand where you are coming from in terms of coping with your personal/work/school life. I just want you to understand that life is not easy and in some cases some people get dealt worst cards than others and I think in order to maintain a healthy state of mind you sometimes need to learn to accept them. The most important thing to do in this situation is focus on positivity not only for yourself but for your father as well. I have had many sleepless nights, had to work, take care of my mother and the rest of the family while also being a young adult. It isn’t easy but I don’t want you to feel like you need to turn to medication to help you cope .. in most instances medication leads to suicidal thoughts and other dangerous side effects which I feel you are to young to have. Considering the obstacles I’ve ever had to overcome, I never once thought of seeking medical attention for them as I know for a fact that it will only make me dependent on them. I think that the best medication in the world is yourself, teaching your mind and body to accept what life because at the end of the day it is a gift. Whenever I’m struggling with my emotions and life itself I always think to myself what would my mom or dad want me to do, and so I choose to live my life in a positive way and fight through the negative thoughts which are only natural. I am strongly against the use of medication and I urge you as well to stay far away from them. Maybe picking up a good book, working out, and other hobbies could potentially take your mind away from the sadness in your heart. Trust me, if I know one thing is for sure … there is nothing worst than coping with the thought of losing a parent and I want you to know that no matter what happens everything is going to be okay and that you should trust a higher power (if you are religious) and believe that everything happens for a reason even though we don’t see the benefit or the reason for it immediatley. Please feel free to contact me if you wish to talk more. My heart goes out for the both of you and always remember that you are not alone in this situation and that eveything is going to be alright!
Hi Mary,
Your experience sounds familiar although not truly alike, my mom had the same drain you were talking about inserted into her abdomen a few months ago. Initially, my mom was on gemcitabine/cisplatin and it worked wonders for her. She did no experience any swelling of the feet/ankles nor did she have fluid in her abdomen as a result of the treatment. She developed the fluid about four months after stopping gem/cis. Having said that, she was having the same problems as you regarding the swelling and after being drained by needle the doctor recommended they place the drain to provide her with additional comfort. The procedure itself was very quick, and my mom had minimal pain once it was complete. She was able to go home about an hour or so after its insertion. It was a very simple solution to the problem, was not messy and very easy to use. In Canada, we are provided with palliative nurses that come to your home and remove the excess fluid as often as you need it done. My mom was doing it once or twice a week and then later moved to every other day. It definitley helped alleviate her uncomfort but it also decreased her blood pressure in several cases (if it is drained too often etc). You have to remember to drink lots of fluid to help replenish yourself after having the fluid drained. My mom was also seeing a naturopath at that time and I know her recommendations helped a lot as well (unfortunatley my mother was at the end of her journey, I truly believe had we started earlier her fate would’ve been different). Nevertheless, I think it is a valuable tool to have to deal with this symptom, it is not permanent and can be removed should that be the case (god willing). Please feel free to contact me should you have any additional questions.
P.S – showering is a bit tricky as you are not supposed to wet the area. The palliative nurses provided my mom with a waterproof tape which they placed over the drain to protect it (so she wouldn’t get it caught on anything etc) and then I would place saran wrap over the area and tape it again when she showered and then I would take it off once she was done.
Dear Michele,
I wanted to let you know that you are not alone in your feelings and the thought of having to lose someone so special to you and your children is one that is hard to overcome. I am 23 years old and sadly I have lost both my parents; my father passed away in a car crash 10 years ago and my mother at 46 passed away in December after a year long battle with ICC. Please know that it is difficult to imagine your life without the one’s that mean most to us, it is almost unconveivable to think of and I would personally recommend that you not dwell on those thoughts but rather enjoy what’s left of your time with your husband. I too used to question and dwell on the idea of losing my mother especially the last few weeks before her passing and wished that I had focused more on “her” and her smell, touch, voice, etc. I know how hard it is to watch someone begin to lose their battle but always remember that you have your children to help get you through those “bad” days and that you must be strong for them, for yourself, and of course your husband. I think there is nothing worst as a child then having to lose one parent and then watch your remaining parent suffer and focus so much on the loss of that special person; my mom always tried to keep it together after we lost our father and always ensured that we lived as normal of a life as possible without our amazing father. Having said, maybe it would be a good idea for the kids or yourself to record a video of your husband saying he loves you all. If that’s too hard, then at least try your hardest to explain to your kids and comfort yourself in the idea that when that time does come he will no longer be suffering. As hard as that thought may be, it will bring you comfort knowing that he is no longer in pain and that he is still with all of you in your hearts guiding you through the remainder of life. To be honest, it is very difficult to get through to someone going through such a horrble period in their life .. I understand. But just know that none of know what tommorow may bring so it’s always best to remember that life is a gift, and that every person will one day come to the end of their journey on earth only to begin a new one in heaven. You and your family are in my prayers, and as hard as it is .. try to enjoy what’s left with your husband and comfort him with the thought that when the time come’s you and your children will be okay.
My heart goes out to you,
MilenaHi Jules, would you mind emailing me at milena1racic@gmail.com? I have some questions about the tea your mom has been using?
Thanks xoxox
MilenaThank-you Lainy for your insight and support! Tanya, it is good to know that there is someone in our area that is going through the same thing – I feel as though this is such a rare disease that it’s hard to connect with anyone in the GTA!
I’m interested in the kind of treatment and service you get from Princess Margaret. We have opted to receieve treatment from Credit Valley Hospital as we live in Mississauga and it’s very convenient (a few minutes away from our house) as opposed to driving through traffic to downtown – even though I work a few minutes away. I feel as though our oncologist is well versed in his area of expertise but I don’t think that any type of billiary cancer is his specialty. I know he has mentioned to us that he does keep close relations with dr’s from the PMH but now that my mother’s condition has worstened I am thinking that PMH might be a better solution.Are you pleased with the treatment options you have been provided with? Does Dr. Moulton have good bedside manner?
Thanks everyone for your support. My family and I are actually very pleased with her oncologist, he is one of the best in the hospital my mom attends and is very caring, sensitive to her needs, and fairly knowledgable. Having said that, I forgot to mention that he ordered a scan last week, it will be taking place on the 24th of September and we will be reviewing the results and possibly starting Xeloda on the 26th. The reason he thinks the cancer has become active again is solely due to the fact that she posseses the above symptoms and because one of her liver functions was elevated (it is in between where she left off when she finished chemo and her initial diagnosis) which is a little worrisome. Also, even though she was a vegetarian, she has now began to eat organic chicken and wild fish – just as Carl mentioned in his post in order to strengthen her body and immune system.
Thanks everyone for all your love and support,
I am only 22, so it has been quite hard on me. With regards to the pain medication, my mom is not a big fan of taking strong perscription medications as she feels they will continue to “poison her liver” at the same time, her pain is not exruciating. At our cancer treatment centre she is asked to rate her pain from 0-10, 0 being no pain and my mom often chooses 2-3. The oncologist always asks but my mom says its not necessary as it is not agonizing.
My mom explains the pain as dull, in the beginning of her journey she had absolutley no pain (December 11th). The first time she was admitted to the hospital the doctors would press down on her liver and my mom felt absolutley nothing. It wasn’t until they placed a metal stent, and then performed a liver biopsy that she felt pain. For the longest time the doctors couldn’t establish whether or not the pain was stemming from the liver biopsy as she had internal bleeding (that was apparently resolving itself) or if it was the cancer.
Pamela, I am so glad to hear that your daughter is having the opportunity to have a surgery especially because she is so young and deserves to enjoy the rest of her life! I told my mom about your daughter’s story and she was so inspired and motivated – so it’s nice to hear great news
Did your daughter have a billiary stent?
