1 (edited by lina Sun, 14 Sep 2008 15:43:09)

Topic: Hello everybody

I am grateful for coming across this website. My mother was diagnosed with CC a week ago. She first had jaundice (while visiting my brother in Miami)and was taken to the hospital. It took the doctors almost one month to diagnose her condition. They did numerous biopsies of what appeared to be a Klaskin tumor but were unable to detect the cancerous cells until they finally did an open biopsy where they found the cc had spread (stage IV). The doctors have also given her "months"... this is so upsetting for our family. As her daughter, I am her caretaker and feel a lot on my shoulders, since I will be leading the way to her recovery or non-recovery... it is a lot of pressure since there has never been any cancer in our family and I am completely ignorant on the subject and as to any possible treatments out there that can benefit her.

Thank you for any suggestions you may have and for being there along this path that my mother and I have just begun.

love and blessings to all of you!

Lina

ps. Also, we are in NYC and would love to connect with other new yorkers that are going or have gone through the same .... I am still looking for oncologists for my mother... if anyone has any suggestions I would deeply appreciate them.

Re: Hello everybody

Of all the paths in life, we sure hate to welcome you here, but welcome. ALWAYS get a second opinion. There are a lot of people on this site that were told the same thing and they are still here, thank goodness. The first few days are like a bat hitting you across the chest. It's disbelief and denial  that will turn to strength and perserverence to get through this nightmare. You have come to the right place and you are sadly NOT alone. Have the doctors suggested anything? What state are you in? Your mother is very lucky to have a daughter like you. You need to have other family members step forward to help all of you
along this path. Our thoughts are with you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello everybody

Hi Lina,
I'm a fellow New Yorker (now in NJ) and my mother also had cc. So sorry that you and your family have to go through this.  I would recommend that you get second opinions - I don't know where you got your first opinion, but we went to NYU and we weren't very impressed with their service or bedside manner, though they supposedly have pre-eminent specialists in the field. It just took tooooo long to wait for appts, get chemo, etc. Memorial Sloane Kettering is the best in the field, according to many people, and I would have sent my mother's info to them but it was already too late.

Where has the cancer spread? Did they give you the option of chemo, and if so, what type of chemo? Does your mother want to take chemo? For some people, chemo does help extend life with minimal side effects; my mother had terrible side effects and I believe it shortened her life -- but each case is individual. You will see many people on this site that were given months to live, and they're here years later. Other people, like my mother, go very quickly. It's so hard to predict the rate of progression and we're fighting to get more research done. Is your mother's primary cancer intrahepatic (inside the bile ducts in the liver) or extrahepatic (outside the liver)?

Sorry for all the questions - I just know that when my mom was diagnosed, I needed all the information I could find, so that I could converse with her doctors and push them for answers. I know it's hard to shoulder all the burden by yourself -- I hope you have friends or other family members who can help you a bit.

Best of luck to you and please ask any questions and I'll try to answer them - or some of the very knowledgeable people here will give a better answer!
Joyce M

Re: Hello everybody

Hi to you, Lina and sorry that you have had to make our acquaintance. My sister was treated in Memorial Sloan Kettering by Dr. Jarnagin. He is a surgeon. The oncologist we had met with is a Dr. Keilson. Both were really excellent and even though my sister's liver was unresectable, they did everything possible to treat her. The main thing is to have insurance that they accept and be persistent in trying to get appointments and tests. Hope that helps, Belle.

Re: Hello everybody

Dear Lainy, Jmoneypenny and Belle

Thank your for your all your support and suggestions. My mother was just discharged from the hospital in Miami last week and yesterday we traveled back home to  New York City. I will definitely, seek a second opinion out here. I did call Sloan Kettering but they don't take her insurance. 

My mother's primary cancer is intrahepatic that has spread to the peritoneom (sp?). The oncologists in Florida offered chemo as an option after she recuperates from the surgery (of her open biopsy and from the procedures she had for placing in stents in her bile duct).  I have made an appointment with an oncologist  at Mount Sinai hospital, referred by her primary doctor.  I just hope that she can get strong enough to withstand chemo - if chemo is the best option for her.  The truth is that I am very worried of my mother receiving such  aggressive treatment as chemo, conventional medicine seems to sometimes do more damage than good.... I am afraid of having the same experience as your mom (joyce).

Also,I am unsure if I should push to get the best possible doctor for her in the area or if it does not matter because of the stage of her illness.... I feel this is some how the message that I've gotten from doctors, which I don't know whether to believe or resist. thank you for any insights that you may have.

peace,

L

Re: Hello everybody

Hi Lina,

I know how confusing this is to you right now --it's still confusing to me, even after having gone through it! First of all, I need to say that there is no right or wrong answer, so don't go beating yourself up (now or in the future) about not making the right decision. It's a really tough call. It helps if your mother has a strong opinion about any of this -- but if she's like my mother, she will just let you take over for her and you'll have to figure it all out yourself.

My mother really HATED the idea of chemo, but she got so depressed, thinking she wasn't fighting and was just resigning herself to death, that eventually she felt like she should do SOMETHING -so we agreed that she could start the chemo on a sort of trial basis, and if she had bad effects, she could stop it at any time. This idea might work for your mom if you're unsure of how the chemo will work for her.

The chemo my mother had was Gemzar and Xeloda and after her first session she felt 100 times worse for a week. Then she seemed to bounce back and was feeling wonderful for a week, and we thought the chemo might have been working so we went for another round. That second round really depleted her, but we'll never know if the chemo wrecked her immune system or her advanced disease was beyong helping. Of course, others have had MUCH more positive experiences - my mother was always very sensitive to drugs, had many drug allergies and a compromised immune system from autoimmune hepatitis, so you have to take your mother's overall health into consideration. My mother was 64 and healthy but the hepatitis issue complicated things.

You might also want to consider some natural and alternative therapies that many people on this board have tried with some success. Change or restriction of diet, natural supplements, etc.  Look under the "Alternative Treatments" heading and you'll find a wealth of information. But if your mother is averse to trying any of these, don't push too hard (thinking of my mother again, and how she'd never give up her coffee and donuts, and how could I bug her about those small joys in her life?) There are also clinical trials that you can look into. Oh, and make sure you ask about getting some prescription nausea meds if she doesn't already have some, and meds for other symptoms like indigestion, pain, etc.

As for getting the best doctors, I do believe that it's important to get an oncologist who has a lot of prior experience with cc, as it's still considered rare and many doctors don't know what to do. More important than anything, though, is finding a doctor who is sympathetic and helpful and informative - someone you can really talk to. Too bad Sloan Kettering won't take your mother's insurance, but Mount Sinai is also considered pretty good in general (not sure about their experience with cc, though) and you may find a great doctor there. Don't be afraid to switch to another doc if you don't like this one. As for the docs in Florida making it seem like it doesn't matter what oncologist she has, well, they could be right -- but they could be very wrong, so I'd see that she got the best care that her insurance allows.

Is your mother feeling relatively okay (any symptoms?) and recuperating well? I hope they don't suggest chemo until she's fully recovered and up to it. How is she handling this mentally? And how are YOU holding up? I wish I had gone to a support group or grief counseling while my mother was still alive, but I suppose it's hard to find time for that when you're taking care of a loved one. But please find a friend to vent to -- or feel free to vent to me! This burden takes a lot out of you and is so painful to go through. I wish you a much better outcome than my mother had - and it IS possible. I don't want to take away any hope with my depressing story. I just want to help others going through this in any way I can. It's a tremendous blow when you get this diagnosis, and your mother may be very understandably depressed. Just by being there with her and taking care of her, you are doing the most wonderful thing in the world, and I know she appreciates it. I wish you and your mom all the luck in the world.
-Joyce M
PS - To add to my very long post, just a thought: if your mother doesn't want any chemo, you should look into hospice services in the area. They are invaluable resources and offer medications for comfort, psychological counseling, medical supplies, and lots of information for those who decide to forgo treatment.

Re: Hello everybody

Lina,

Sorry to welcome you here, it's the only friendly place nobody wants to visit.

The nature of this disease and the way it progresses pretty much means you will always be second guessing decisions so you just have to accept that you're doing the best you can with the information you have at the time.

Having said that, your Mom seems similar to mine in that she was very weak and the first time we took her to an oncologist, we were told she was too weak for any kind of chemo. I wish I had known about photodynamic therapy (PDT) which has minimal side effects and is accepted treatment in Europe. Here are links to some previous posts and you can also put PDT in the search box to find more:


http://www.cholangiocarcinoma.org/punbb … hp?id=1815

http://www.cholangiocarcinoma.org/punbb … hp?id=1658

Patty

Re: Hello everybody

dear Joyce,

Thank you for taking the time to answer my post with such thoroughness...
I really appreciate sharing more of your mom's situation and complications that she went through, it definitely helps me put things into perspective, it is wonderful that you can put such a painful experience into a positive one by advising people like me.

Luckily my mother has a good attitude in general about the whole thing. She has many brothers and sisters plus friends who have been extremely supportive and positive. But they are mostly down in South America (Colombia) where my mother is from and spends a lot of her time. They also have been very supportive to me, they all have so much faith and positivism despite the meaning of this terrible illness. It really blows me away to see there lack of hesitation when saying that she is going to be cured.  All of this has been very touching to us.

But when getting down to practical manners, I'm the one doing all the research (my mother's main language is spanish and her english is limited) and leading the way in terms of the care and treatments that should benefit her, . She and I are very close and think a lot a like. she is also very smart and conscientious about  doing what is good for her, so she is already avoiding sugars, taking supplements and eating all organic, etc... In other words, she is cooperating and willing to do all what it takes to be healthy, including going through chemo. However, she does not want pain. She has gone through so much in the last couple of months that she is still trying to recuperate from all of it. She is still on morphine to control the pain from the surgery she had about two weeks ago. I just hopes she gets strong and pain free soon, she was always so healthy and strong that it is very hard to see her like this, although she is recuperating pretty well... -sorry if I'm babling....

I think you are right about going for the best doctor that I can get. I'm going to hear what the oncologists at Mount Sinai have to say and if not satisfied we will move on to the next option...  even if I have to beg at Sloan Kettering... I also agree that there needs to be a good chemistry between doctor and patient, I think that is very important. 

I am looking into alternative/complementary therapies as you suggested, this website has been so great at providing this information. But I haven't decided on anything yet, I still have a lot of reading to do... for now, she is eating as healthy as possible as I said, avoiding sugars, eating organic and is taking antioxidant supplements, Maitake for her immune system and also a drink based of acai berry that is rich in antioxidants called Monavie.  At least this is helping her recuperate, I don't know if its having any effect on the cc...

Joyce, thanks again for all your valuable advice!  best luck to you too!

L

Tiapatty-

Thank you so much for support and your suggestions with PDT it sounds great I will definitely look more into it.

blessings!

L

Re: Hello everybody

If you are interested in alternative treatments, I have posted before (but don't know where they are)about Vitamin C injections. My daughter's fiance is in remission with Lymphoma and has been going to a naturalpathic doctor who administers vitamin c intravenously. The treatment while supported by Oncologists is not covered by Insurance. He swears by it in as much as it helped him while going through chemo and has met other cancer patients who have benefited greatly by it. We have a clinic here in Phoenix who specializes in these things and yo can gte an idea on the way it works by logging in to:  envita.com.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello everybody

Thank you Lainy for the suggestions. It's great to hear people's success stories, I will definitely look into this therapy. Many, many thanks!

Re: Hello everybody

Lina, I understand the job you've taken on to do the research and help your mom.  I'm not sure of your mother's overall condition and what stage cancer she's at but my father has received excellent treatment from the McKinney Cancer Research Center in McKinney, Texas.  There are people in the office who speak spanish.  My dad has stage IV cancer and it's unfortunate that we didn't find this oncology group when we first discovered this diagnosis.  The center is very aggressive in their treatment and they are very up to date on hepiliary cancer protocols.  I would recommend them and if I had cancer this is the center I would want to be treated at.
God Bless

Re: Hello everybody

Lina,
I just wanted to say I bet you are doing a fantastic job and how much your mother must appreciate and need your help. I am in a similar situation in that I live in Sweden with my husband, but dont really speak the language. My husband has to do everything and come with me to all doctors appointments. I can say from experience, that the language barriers sometimes makes the whole thing more frightening and you feel like you are less in control. Having someone who cares about you there and working with you and the doctors takes away some of that fear. So you are already helping and supporting her emotionally in ways that are often overlooked. Like what was said before, there is no "correct" path with this disease so you can only make the choices that are good for you on that day. You cant second guess or you will make yourself crazy.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hello everybody

Hi Lina,
THat's so great that your mother is open to diet change and supplements - sounds like she has a wonderful attitude, and that's half the battle!

The language barrier must be frustrating for her -- I"m sure there are plenty of bilingual Spanish doctors in all the NY facilities, and I know that many of them offer translators (but I guess that's your job! but in case you can't be there it may be helpful). On a completely irrelevant note, I dated a Colombian guy for 6 years so I'm very fond of Colombians and would love to visit there sometime! You're very lucky to have a supportive extended family.

It sounds like right now your mother just has to get back on her feet, so you have time to make the big decisions. I'm sure they won't put her through any unnecessary pain or treatment right now, and like I said, she can always try chemo when the time comes and then stop it if she finds it's too debilitating.

Best of luck to you in your research - you're a wonderful daughter.

Joyce M

Re: Hello everybody

Thank you everyone for all of your encouragement!

Rank- I am in New York, but I will keep your suggestion in mind, thank you so much...

devoncat- thank you for letting me see my mother's language barrier from a more positive perspective, I think you are right. It has in way helped her not too read so many scary things about this illness.

Joyce,

Colombia is a wonderful place with wonderful people, you should definitely visit one day... you're very welcome if you decide to go when my family and I are there...

Thanks again for all your support and good wishes, I will keep you all posted on our progress...

blessings,

Lina