Looking for advice
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Lainy – I know I haven’t been on this site much lately, too much stuff going on in daily life! That and trying to get all kinds of projects done. Just not enough time for everything!
Hugs & Love to you and everyone else on this site.
Margaret
Margaret, it is so good to see you again! I do hope Tom is OK and please let us know, I know you will. Prayers going out to you!
Cath-25:
Welcome to the site, you now have a large family to support you. My husband Tom was diagnosed in Mar ’08, had a left liver resection in June ’08 and 18 months later turned jaundiced. He had a new tumor in the remaining part of his liver. This new tumor was inoperable because it involved the hepatic artery. His then onc told him to go home and get his affairs in order. We did not listen and sought 2nd, 3rd and 4th opinoins. Thank goodness we did.
He underwent 28 rounds of radiation, then oral chem (Xleoda) then had a port installed when a radiologist mis read a scan and reported mets to the groin area. Then he underwent about 4 rounds of a combo of Gemzar and Cisplation (sp?) and he is still here 20+ months later.
Currently (today) he as admitted to the hospital with what I am hoping is an infection, but won’t know more until tomorrow.
Tell your uncle that he has his ‘young’ age on his side. To never accept NO for an answer. Make sure that the doc’s who are treating him are familiar with Cholangiocarcinoma or access to doctors who DO. Write down questions as you think of them. Take a digital tape recorder with for all doc visits and re-listen to them after you return home. You’ll be amazed at how much you may have missed and how many questions you will come up with when listen to the tape.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Thank you everyone for the kind words and support.
@Marion, I believe that there has been a misunderstanding about chemo and pain. Until recently, my uncle hasn’t wanted anyone to go to the doctor with him. It was a little frustrating for us because we knew he hadn’t really heard anything the doctor said beyond ‘cancer’. But now my father (his brother) goes with him and writes things down. And I will definitely look into forwarding his records.
@mn, thank you for sharing Lily’s story. I definitely have to tell my uncle about that case.
@Gavin, thank you for sharing your experience with your dad – I am getting all of the positive stories together to give him to read b/c I think it would really boost his spirits. My uncle is on pain meds now; he’s just stubborn and doesn’t like to take them, but he’s taking them now.
@Nancy, thank you for sharing your husband’s story and your kind words.We should hear early next week exactly where the cancer is at; I will definitely post more information when I get it. Thanks again to everyone for your effort and input.
Hi Catherine, My husband was diagnosed with stage 4 cholangiocarcinoma with mets to his liver and bones last December after 2 months of testing to find out what type of cancer he had. Like your uncle months prior he was seeing doctors who told him he was fine and one also suggested it might be in his head! It is frustrating and disappointing. Like you we are in Canada but at the other end! We live in a small town and Doug went to the BC cancer clinic in Kelowna to be under the care of an oncologist. Though Doug was told the cancer is incurable he was told he may achieve better quality of life and lengthening of life with chemo. ( He received radiation to the worst spine mets). We opted for the chemo treatments and we also see a naturopath for naturopathic support. He started chemo in December and finished the 8 cycles of gemcitabine/ cisplatin the end of May. We have been very fortunate with his response to chemo and he has been stable (no progression) since February. His quality of life has improved greatly.
Doug turned 60 in May, so is in the same age bracket as your uncle.
Also, the chemo did help Doug with the pain tremendously.
I would suggest seeing another oncologist that would support trying chemo, if that is what your husband wishes. Postive thoughts being sent your way.
NancyHi Cath,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your uncle. You have come to the right place here for support and help and I am glad that you have joined us all. Feel free to ask any and all questions that you have. We are not doctors but we will all do what we can to help in answering them.
I was the carer for my dad when he had CC and I know what you are going through. You are doinmg the right thing for your Uncle in coming here and seeking help for him and I know how much he will appreciate that. My dad used to sleep a lot during the day also. He used to take many naps each day and the fatigue really hit him hard. I so agree with what Percy and Marion have said to you regarding pain. There are so many meds out there that will help with your uncle’s pain, is he taking anything right now for the pain?
Please come back here and let us know the results of your uncles MRI and CT scans. And feel free to come back here as much as you want, shout, scream and vent away if it helps. We know what you are going through and we care.
My best wishes to you and your uncle,
Gavin
Chicago summertime temps are so not happening here, I still have my winter duvet on my bed! I hope that you are keeping your fluid intake up Percy??
Percy….I have always been lucky when traveling to Chicago. It never is too cold nor is it too hot. I have to say, based on my own experience “CHICAGO HAS GREAT WEATHER.” But, then it seems that ASCO and some of the other medical conferences know just how to schedule it right. I sure hope for a cooling trend to be heading your way.
Hugs
MarionBesides for this webiste, the following website has been very helpful for me when my mother was first diagnosed.
http://csn.cancer.org/node/167397
If you look through the message, there is a lady named Lily. She was an amazing help when I was first learning about this disease. She was diagnosed at stage 4. She went through a whole year of chemotherapy before her tumor was small enough for them to operate on. She had her surgery and more chemo and has been cancer free for 5 1/2 years. Yay! Of course when we mention this to my mothers doctors they tell her that this is a fluke. But it is those cases that give others the courage to continue.
And Marions is right, someone should go with him to hear what the doctors are saying. Because we all take things in a different way, and he might get stuck on the negative. Just keep reminding him of the positive
Hi,Marion,
Thanks for your quick response.
I need a cold beer from Germany now; it is hot, hot, hot here and tomorrow is not much better either.
God bless.Hi Cath….I would like to chime in and welcome you. Understandably your Uncle is upset and disappointed, but I am most concerned about the level of pain you are describing. That simply is not necessary as pain medication is readily available.
Also I am wondering whether there has been a misunderstanding re: pain and chemotherapy. As Percy has mentioned pain is not a side effects of chemotherapy.
Does someone else accompany your uncle during doctor’s visits? It is understandable for patients to be rather confused therefore, taking notes on his behalf is always advisable.
Yes, we have seen a better quality of life for those patients responding to certain treatments.
Chemotherapy responses vary from person to person as do side effects. And, the treatments can be halted at any time.
I believe that the physicians Percy has mentioned will be able to advise based on their vast experience with this cancer.
I would also like to add a bit more info in re: to Dr. Cleary, surgeon with a clinical focus of surgical treatment of pancreatic, hepatic and biliary malignancies.Tel: 416 340-5331
Fax: 416 340-3808
Email: sean.cleary@uhn.on.caDr. Jennifer Knox, and Dr. Laura Dawson have a vast amount of experience with this cancer. Is it possible for the records to be forwarded to each of the physcians? (Several Canadian doctors have told me that things are handled differently in Canada than the way it is done in the US.)
Catherine…you are doing everything right. You are advocating for you uncle in the most meaningful way. With your help your uncle will be able to make the most informed decisions necessary in the fight against this cancer.
I am sending all my best wishes,
MarionHi,Catherine,
I found the following message hope it helps.
Princess Margaret is the best Cancer center in the Ontario Province;So you are in good hands.My sister and two classmates of mine were treated there for breast cancer and had good opinions about them.Lets wait till the CAT SCAN and MRI report comes out on Friday then we can try to answer your questions better.Please quote exactly what the report said with regard to what you do not understand.
Radiation and chemotherapy are inline with CC diagnosis and current treatment protocol,I will go with that.Chemo is not painful but may have side effects like nausea and vomiting and fatigue;they are all treatable side effects;take a look on our “side effects” experience forum and you will know more about them.Chemo is not a cure but will slow down the cancer growth and give the patient a chance to fight;NEVER believe what the statistic say about how long to be around.Most of the statistic are from 1995-2008 which may not apply to current new treatment plans.
For pain,depend on the location,Advil(ibuprofen),Alieve(naprosyn),are OTC medications that can provide good pain control.
Vicodin,Percoset,Lortab,Norco(acetaminophen+hydrocodone) are the second tier pain medications to provide more pain control but required prescriptions.
MSIR,MSCONTIN,OXYIR,Oxycodone,Fentanyl patch and Actiq(lollipop),Fentora(buccal tablet) are oral immediately release dosage form for breakthru pain control.all require prescriptions.
Morphine and hydromorphone PCA are normally for the patients in their last stage of pain management in hospice care setting’I am not a doctor,I am just a patient but I think I can help you a little bit in understanding better about CC.
In the meantime, tell your uncle who is 58 years young that age factor is on his side and there is always hope for us-the CC patients; if we treat this disease like chronic disease like hypertension,then your uncle will have more positive energy to deal with this disease;I am sure it will not be
surprised if there will be more effective treatments for us 3-5 years down the road.But we must hang in there until then.
God bless
Here are the names you may needed.-it is a recopied message from the “Marion collection”
marions wrote:Hello JennyLou and welcome to our site. I don’t recall anyone being treated in ON however, we have numerous postings from patients treated in Toronto. I will enclose some links for you:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2592
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=7824
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3373
Dr. Jennifer Knox
Address:
Department of Medical Oncology
Princess Margaret Hospital
610 University Avenue 5-210
Toronto
Ontario
M5G 2M9Phone: (416) 946-2399
Fax: (416) 946-6546and Dr. Laura DawsonLaura A Dawson, MD FRCPC
Associate professor,
Dept. of Radiation Oncology,
Princess Margaret Hospital
University of Toronto
Toronto, Ontario
phone 416-946-2125
fax 416-946-6566Dr. Sean Cleary (surgeon) also is at Princess Margaret Hospital. All are very familiar with this cancer.
Good luck and please, stay in touch.Hello everyone,
Firstly, I’d like to say what a God-send this website has been. While I’m just posting now, I found this website about 2 weeks ago and have found so much helpful information here!
I’m looking for information to give to my 58 year-old uncle who was diagnosed with cholangiocarcinoma mid June. He had been experiencing pain and discomfort since September 2010 and has been going to doctors and specialists ever since. He’s very upset and discouraged as the doctor’s couldn’t find anything wrong with him for the longest time and at one point they said it could be all in his head. He had been told he was “completely healthy” and “definitely did not have cancer” only to be given the diagnosis of bile duct cancer some months later. He doesn’t have much faith left in the health care system and after diagnosis, he was too angry to do anything about getting treatment (much to my dismay). Last week he went for a 2nd opinion to another hospital on possible treatment options. We’re in Hamilton Ontario and he’s been dealing with the Juravinski Cancer Center, but he went to Princess Margaret in Toronto for his 2nd opinion. Both doctors told him his cancer was inoperable and it was recommended by both doctors that he do radiation, BUT while the Princess Margaret surgeon recommended chemotherapy, the Juranvinski oncologist did not.
I don’t know what stage he’s at, except that his health is declining rapidly. He was marked for radiation yesterday and is getting an MRI tomorrow and a CAT scan Friday. Next week they will give him all of the information as far as staging, but at his appointment yesterday, they only gave him 4 to 6 months. Because the first doctor told him the chemo would be painful, he opted against it, but I’m wondering if it wouldn’t be a good option. From what I’m read here, chemo has helped in some cases.
Presently, he sleeps A LOT an is in a great deal of pain. I’m wondering because his quality of life now is poor anyways, if he might as well try chemo to alleviate some of the pain?
I’m just wondering if anyone has been or is a caregiver for someone who has been in this situation – a poor prognosis – but has sought treatment and gotten better (not cured, just less pain). I would like for him to go to a 3rd doctor (Mt. Sanai in Toronto or Roswell Park in Buffalo), but he’s quite depressed as it is and is wondering if there would even be a point.
So I guess I have three questions:
1. Does anyone have experience with a situation similar to this where there has been a positive outcome (seeking treatment and had a better quality of life)?
2. Regarding chemo therapy, in your experiences, do you think it’s an option worth trying, or, at this point, would the side effects be too much?
3. Finally, do any of you have any knowledge of Roswell Park or Mt. Sanai in terms of expertise and/or treatment?
I appreciate your time and help. I want to try and help my uncle and give him good advice and I don’t want to steer him in the wrong direction.
Thank you,
Catherine
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