1

(28 replies, posted in General Discussion)

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 smile

Milena

2

(6 replies, posted in Grief Management)

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!:)

3

(15 replies, posted in General Discussion)

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.

4

(9 replies, posted in General Discussion)

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,
Milena

Hi everyone,

I am looking to host a support group for all cholangiocarcinoma patients in the GTA. I am trying to collect numbers at this point to determine the size of the space we require, and what would be the most convenient location.

I strongly encourage everyone that is diagnosed, provides care for a loved one, or lost someone to this disease, to join a support group in an effort to share information, feelings, and thoughts in a judge-free environment.

Please comment below if you are in the area and would be interested in attending.

Thanks,
Milena

Hi everyone,

I am looking to host a support group for all cholangiocarcinoma patients in the GTA. I am trying to collect numbers at this point to determine the size of the space we require, and what would be the most convenient location.

I strongly encourage everyone that is diagnosed, provides care for a loved one, or lost someone to this disease, to join a support group in an effort to share information, feelings, and thoughts in a judge-free environment.

Please comment below if you are in the area and would be interested in attending.

Thanks,
Milena

Hi Everyone,

I have been following many of these posts throughout the year reading and learning about this tragic illness and each and every one of your experiences. Although I want to encourage everyone to continue fighting and staying strong, I thought it would be appropriate to post that my beautiful mother passed away on December 4th. I have yet to come to terms with her passing, it happened so suddenly (which in one way is a blessing; they were going to give her more iv's/insert a catheter etc) and I never got the opportunity to really say good bye (she was in and out of consciousness) and to learn about her final wishes. My mom was young at the time of her passing, 46 years old to be exact, and wanted to live more than anything in this world. Even during her final moments she fought for her last breath and in fact the morning of she was able to stand on her own two feet and swallow food/water.

So with a heavy heart, I am writing to all of you for a number of reasons. Many of you on this forum completely avoid the topic of death (which is understandable as we did the same) but now looking back at this situation I had wished I spent a little more time talking about end of life with my mom, learning about her wishes, and just preparing somewhat for a goodbye. Although she is in my heart forever I know that it might have bee a little easier for her had I let her know that my brother and I were going to be okay (we lost our father in a car accident many years ago and my brother is now 18) as I know that was her biggest concern. Every night before bed she would tell me that she would pray to god to not separate her from her children and so now a part of me wishes I could've brought her that comfort of knowing that we were going to be okay. Although I was by her side as she took her final breath and communicated that it was okay to let go I felt that had we discussed "death" it might've given me more closure. I know many of you are parents on this forum and I have read about some of your concerns regarding your children, and although I am in no position to tell anyone what to do or how to live their lives I feel as though it is a very important subject to discuss because you never know what tomorrow may bring. My mom was such a fighter and even though I knew she wasn't doing so well, it was just so unthinkable to imagine life without her that when it happened I realized I missed a lot of signs etc.

Also, I wanted to share something with all of the newcomers to this site and for those that were recently diagnosed. My mom was a stage 4 ICC patient that had a 9x8cm tumour and had lymph node involvement which later spread to her lungs. She did very well on gem/cis and then the cancer came back in action which led to a very diseased liver, her trying Xeloda etc. In November we decided to pursue natural medicine, but at that time it was to late. We met some incredible naturopaths in Toronto and for those of you that are living in Ontario, Canada I would urge you all to contact me at milena1racic@gmail.com so that I can share some of the things I learned throughout my journey with my mother and possibly help someone else. We were using cannabis oil, vitamin c iv's and DCA … the naturpath that she was seeing had incredible results for pancreatic and bile duct patients so please do not hesitate to reach out to me.

Thank-you to everyone who helped answer some of my questions on this forum and I wish each of you a life full of happiness, love, and health (first and far most). Please try to enjoy your lives and your families as much as possible, go on the vacations you always wanted to go on, see your friends, etc because you never know what tomorrow may bring. Once again, best of luck to all of you and should any of you have any questions or would just like to talk please feel free to reach out to me.

Milena

Hi Everyone,

My mom developed ascites in the last few weeks which resulted in two paracentesis procedures. That didn't really alleviate my mom and finally a drain was placed in her abdomen last Wednesday to help make her more comfortable.

This all sounded great until the procedure was completed, now my mom can't really do anything and the water never seems to go down enough (or maybe it accumulates way too fast). She says that she can feel the catheter sometimes and that it's painful - also, she doesn't seem to be getting enough releif even after the procedure (it might have to do with the limit set in terms of how much fluid the nurses can remove twice a week; 1.5L)

Nevertheless, has anyone had experience with a drain for ascites? Has it helped you and did it take a very long time to heal?

I am just so, so, so nervous and upset because she can't sit properly and always has to lay down. She said that she feels okay but that the drain and the fluid are ruining her ability to do anything. We will be reaching out to the doctor of course but I wanted to get first-hand experiences because those always differ from the textbook answers we receieve.

Just as an FYI - my mom did amazing on her first line of treatment gem/cis and she is now on xeloda after the cancer came back with avengence (satellite tumours, one large tumour, lymph node involvement etc)

Your feedback would be great.

Many thanks,
Milena

Hi Jules, would you mind emailing me at milena1racic@gmail.com? I have some questions about the tea your mom has been using?

Thanks xoxox
Milena

Thank-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?

Hi Everyone,

Many of you may or may not be familiar with my mother's case, so just a quick recap. She was diagnosed in December with ICC with a large tumour of 8x9cm, two smaller ones in the liver as well as some lymph node involvement, she is also 46 years old. Having said this, after the biopsy was completed and a metal stent was inserted she started the gem/cis regimen in which she had some success. The largest tumour shrunk in half, one of the smaller tumours dissapeared and the other one was only 1cm. Her lymph nodes shrank slightly and that was that. She continued with the chemo until the doctor and her decided it was break time as she had already completed 7.5 cycyles by June. She started to experience strange symptoms after, pain in her shoulders, lower back etc. They ended up doing a repeat scan in July and everything was stable which was very good news. Unfortunatley, her condition worsened ... she ended up losing more weight, had bad fatigue, was burping all the time, had a fever here and there but nothing. We went to the ER and they did a chest xray for infections but didn't find anything and then two weeks later she had another ct scan (this is now September). When we got the results of her ct scan from September we were saddened to hear that her condition did in fact worsen, all the little tumours that had once dissapeared were now back again and active, her largest lymph node is now 4cm as opposed to 2.5cm, there are many more lymph nodes involved and apparently there are 3 nodules measuring between 2mm-6mm in her lungs. I couldn't believe it, the doctor on the other hand was concerned but said he does not want to give up even though we are calling in palliative care to ensure that pain is managed well a long with other symptoms. The doctor also decided that he would put her on Xeloda, 1800 mg for 2 weeks on and one week off. Seeing as her condition is not the greatest, has anyone been on this chemo regimen with advanced liver disease and seen success? I really am concerned, I need her to get better, feel stronger. She is not able to sleep as well, and complains of back pain all the time, she also has mild ascites.

If anyone could please provide me with some advice as to what they have done to combat liver disease that is advanced, it would be greatly appreciated. Unfortunatley, it seems as though Canadian oncologists have differing opinions about Cancer as opposed to Americans. I have seen on this forum that many people have used radiation, medical marijuana, and other chemo cocktails ... his response to radiation was that it was still being tested and hasn't been proven in terms of success but I feel like many of you have had success. This has become a very difficult situation, the doctor that she has is great ... he is not a negative person and I feel like he cares about my mother but I would like to exhaust all options to ensure that she feels better. Please share your experiences with me so that I have something to share with him and my mother so that she doesn't ever give up hope.

All the best to each and every one of you<3

12

(5 replies, posted in General Discussion)

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.

13

(5 replies, posted in General Discussion)

Hi Everyone,

My mom who is 46, diagnosed with ICC in December has been on gem/cis between January until the end of June. Since then, she has been off as the chemo began to feel overwhelming and really made her fatigue and frail. Having said that, she decided to become a vegetarian and has lost about 15 pounds between the end of June and now. We saw her oncologist last week and he believes that the cancer has become active again because of her symptoms; weight loss, constant burping, very fatigue, muscle pain etc. I am not sure what to think because based on her last scan in July the cancer was stable (it had shrunk from 9cm to about 5x4cm and other liver tumors had dissapeared or were at 1cm with some lymph node involvement). I know that many people have the cancer return, grow etc, so I'm curious to find out whether or not anyone has experienced these symptoms and if this very alarming? Please keep in mind that the weight loss has probably a lot to do with the fact that she has gone vegetarian and was experiencing some nausea, vomitting throughout the months she's been off chemo because of some of the pain meds she was taking. The doctor prescribed last week 4mg of dexamethesone (once a day) to help her with her energy and it has actually improved her ability to do things and eat significantly (considering she was doing so well on chemo, it was when she got off that she started experiencing all these problems).

The doctor has recomended that we meet with palliative care and so we have an appointment set up in October, it was a little scary to hear those words but he re-assured us that he is not writing her off, he just wants us to have the ability to seek medical attention at home when she has pain or other concerns (she is very stubborn and hates any form of medication, doesn't like going to the ER etc). I am hoping to god that if the cancer is active that it hasn't necessarily grown significantly in the last two months, but I know how tricky it can be, I also worry that it might have spread somewhere else but I TRULY hope that is not the case. If anyone has any experience with the symptoms above please let me know, the doctor said that if the cancer is growing he would put her on Xeloda which makes me nervous as it is a new chemo. Any input would be appreciated, she is a widow and I can't imagine being without her. My brother and I are both fairly young and we are desperate to keep her around, she's our angel smile

14

(4 replies, posted in General Discussion)

Hi everyone,

Just a quick summary, my mom was diagnosed with intrahepatic cc in december and finished 7.5 cycles of  gem/cis in the first week of July. At that time she started to experience pain radiating from her back to her chest, shoulders etc... It would last for a few days in different places and then stop. For exaple the last few days she was fine and this morning she was complaining about a lot of pain on the left side of her abdomen.  She did a scan in July and the doctor said her tumour shrunk a tiny bit which he considers stable...

Has anyone ever experienced this? Could this just be from excess chemo? Please help:(

15

(3 replies, posted in General Discussion)

Hi Everyone,

I have been doing a lot of research and would like to get in touch with Dr. Kato for my mom who is suffering from intrahepatic cholangiocarcinoma. If anyone has his email please send it to me as soon as possible - it is imperative I speak to him.

I appreciate your support!:)

Hi everyone,

So a quick update, my mom who is 46 and was diagnosed in December with ICC had her first ct scan a week ago and we have been told that her tumors have shrunk! The main tumour was 8.8x6.9cm and is now 5.8x4.6cm , second largest was 3cm and is no longer visible, and the third tumor was 2cm and is now 1cm. My mom had lymph node involvement the largest measuring at 3cm which is now 2.5cm and the other little ones have decreased in size but not significantly.

My mom is on gem/cis and she has only had 3 rounds, we look forward to more good news in May (after her next ct scan) although we know not to get our hopes up.

Just thought I would share this information with everyone, give some people a glimmer of hope because I know how heart wrenching this process is for all family and friends and how much better I feel when I read that there is the possibility of shrinkage/stable/good news.

17

(11 replies, posted in Chemotherapy)

Sorry Lainy, my real name is Milena - I'm a female lol!

Thanks for all your support smile

18

(11 replies, posted in Chemotherapy)

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 smile Did your daughter have a billiary stent?

19

(1 replies, posted in Pain Management)

Hi Everyone,

My mom (45 years old) was diagnosed with Intrahepatic CC - she is not able to undergo surgery because of her tumor which is 6x9cm, spots on the liver, as well as lymph node involvement. They have put her on Gemcitibane/Cisplatin and this is her 3rd cycle (she is due for a CT scan on the 15th of March).

My question is whether or not pain on/near the location of the liver is common while on chemotherapy? My mom has been fine for the most part with a little discomfort on that part of her body but yesterday after consuming a cheese biscuit she said that she developed more pain in that area. This apparently happened a few days ago after she consumed coffee. I am very worried for her and am hoping this is not a result of the tumor growing, does anyone have any information on this?

Also, god forbid the chemotherapy is not working to stabilize/decrease the size of the tumour does anyone have any recommendations/success with other chemotherapies with the same type of tumour location?

Any advice will help. I am the only one in the family that is aware of the extent of her illness and I like to prepare myself for good as well as bad news in advance so that I can focus on my mom's response - the more information the better.

Thank-you!

20

(11 replies, posted in Chemotherapy)

Hi Everyone,

My mom (45 years old) was diagnosed with Intrahepatic CC - she is not able to undergo surgery because of her tumor which is 6x9cm, spots on the liver, as well as lymph node involvement. They have put her on Gemcitibane/Cisplatin and this is her 3rd cycle (she is due for a CT scan on the 15th of March).

My question is whether or not pain on/near the location of the liver is common while on chemotherapy? My mom has been fine for the most part with a little discomfort on that part of her body but yesterday after consuming a cheese biscuit she said that she developed more pain in that area. This apparently happened a few days ago after she consumed coffee. I am very worried for her and am hoping this is not a result of the tumor growing, does anyone have any information on this?

Also, god forbid the chemotherapy is not working to stabilize/decrease the size of the tumour does anyone have any recommendations/success with other chemotherapies with the same type of tumour location?

Any advice will help. I am the only one in the family that is aware of the extent of her illness and I like to prepare myself for good as well as bad news in advance so that I can focus on my mom's response - the more information the better.

Thank-you!