CancerCompass message board discussion started by Garagegirl on 5/15/2007 http://www.cancercompass.com/message-board/message/all,12091,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My beloved mother just passed away from pancreatic cancer less than three months ago. Now her older brother is having problems and it sounds like maybe it has something to do with the bile ducts. But he and his wife are the type of people who do NOT ask questions - basically because they don't want to know. Some of my uncle's symptoms are:  major weight loss over the last year or two (possibly as much as 100 pounds), jaundice (stents were put in and it helped with the yellowing), fatigue, depression, loss of appetite. Now he is telling the family his doctor has discovered "something" in a tube and they are going to open him up and remove it and put the tube back together. Either he doesn't know (or is not saying), but this all seems very vague to me. Could it be that the doctor will go in and remove the "something" they see and check it for cancer cells? Will they be able to tell during the procedure if this has spread? They are telling him he will be in the hospital at least 2 weeks, which is a major red flag for me, because in today's world you don't get to stay in the hospital unless it is serious.He does not seem to be in any pain. Is it possible to have this type of digestive tract cancer and not have pain? I know with my mother her pain did not come until the last few months of her life...are we looking at a similar situation? What are some of the questions they should be asking and tests they should be requesting?Any information would be greatly appreciated. Garagegirl Tue, 15 May 2007 00:00:00 GMT those symptoms sound like pancreatic cancer but bile duct cancer is also possible.  Pain is not always associated with pancreatic cancer, especially in early stages.  It depends on where the tumor is located.  I think one thing is clear...your uncle knows his diagnosis and isnt sharing.  If stents were placed then a diagnosis is most likely known. Oncrx Tue, 15 May 2007 00:00:00 GMT I agree, this does sound alot like PC. And I know this b/c I just went thru that horrible disease with my mother. She passed away on 02/23/07 after less than 5 months past her dx. When my mother was first dx  my uncle decided to seek answers to his health problems. I know he was thinking he also had PC. So, by this time he had already lost about 100 pounds, poor appetite and fatigue. His drs were giving him blood boosters for anemia, etc. Then one day he goes to the drs and the dr noticed he looked yellow. So they put him right into the hospital and placed the stent(s). While they were "down there" they took a good look around. They told him they saw absolutely nothing to indicate a tumor or cancer of any kind. They looked his pancreas over really good b/c of my mother's dx and the possibility that my grandmother (their mother) may have also died of PC. (That was many years ago and no one asked questions - which infuriates me!) Anyway...now they have done more tests and he says there is something there in a tube. I'm thinking "what tube", "where", and "how large". Do people faced with the possibility of a cancer dx really go to their dr and not ask these questions? I'm very concerned b/c it is beginning to look like there may be a strong family history here. I'm thinking my aunt and uncle need a support system and they just are not letting anyone in. When my mother was first dx and I called to let our family and close friends know what was going on I remember they thought it was just horrible that I was making it public knowledge. My theory is, ignoring it will NOT make it go away. And when faced with a possible termial illness you must surround yourself with supportive people.Sorry to ramble, but I noticed you are a nurse. Do you still think he might have something going on with his pancreas even though they did a complete examination when they placed the stent? Thank you so much for your advice. This web site has been a wonderful support system for me over the past 6 months. Garagegirl Tue, 15 May 2007 00:00:00 GMT something is blocking the bile duct.  It shouldnt be too hard to figure out what.  It may not be cancer.  Other possibilities include stones, pancreatitis or a cyst.  The stents were most likely placed via endooscopy so the pancrease wasnt really looked at then.  Pancreatic cancer can be hard to diagnose.  Usually a CT scan is used to locate the tumor. Oncrx Wed, 16 May 2007 00:00:00 GMT Hello,To me this sounds very much like a Klatzkin tumor; a cancer in the bile ducts, effecting the liver. I think this, because my husband was diagnozed with this disease, 1.5 months ago. He too has absolutely no pain. But the cancer is so severe that they couldnot remove it from his liver, although they tried surgery a week ago. Now his is home again, with a huge scar and no hope left. Prognosis are 4-12 months left.Fortunately he/we are able to face what happened and what is coming and we talk about it. We saw all our family and friends before the operation took place and that was good. Cause everybody saw how strong he is and not afraid to die. However, he is only 61 and has always led a very healthy and sportive life.On the other hand I know there are people who can only be strong by denying things. Otherwise fear gets the upperhand and then they are really suffering. There is no truth in this, you react as how you are.I wish you strength, cause this is very difficult for the whole family.Kind regards,Iris (from the Netherlands).  Flower1 Thu, 17 May 2007 00:00:00 GMT Thank you Iris from the Netherlands:I appreciate you taking the time to respond to my somewhat vague post. I am sorry for the pain you and your family are currently going thru. I wish you the best.It is hard for me to understand my uncle having a health crisis and not wanting to know or not sharing with others in hopes of creating a support system. When my mom had pancreatic cancer I was like a sponge learning all there was to know about this silent killer and we welcomed any support we could get. I guess my role at this point it to be there if my aunt and uncle ever do decide they need me. I think once they open him up to do the procedure they will know alot more.Thanks again,K Ricker (In the US - Maine) Garagegirl Thu, 17 May 2007 00:00:00 GMT  On 5/17/2007 Flower1 wrote:Hello,To me this sounds very much like a Klatzkin tumor; a cancer in the bile ducts, effecting the liver. I think this, because my husband was diagnozed with this disease, 1.5 months ago. He too has absolutely no pain. But the cancer is so severe that they couldnot remove it from his liver, although they tried surgery a week ago. Now his is home again, with a huge scar and no hope left. Prognosis are 4-12 months left.Fortunately he/we are able to face what happened and what is coming and we talk about it. We saw all our family and friends before the operation took place and that was good. Cause everybody saw how strong he is and not afraid to die. However, he is only 61 and has always led a very healthy and sportive life.On the other hand I know there are people who can only be strong by denying things. Otherwise fear gets the upperhand and then they are really suffering. There is no truth in this, you react as how you are.I wish you strength, cause this is very difficult for the whole family.Kind regards,Iris (from the Netherlands). my mother diagnosed with same more than 12 months ago and stiill fighting hard< dont give up  hope Chrissy m Thu, 24 May 2007 00:00:00 GMT Hi Chrissy,Thanks for the hope you gave me. We just heard it's more a matter of weeks than months, we have left. On the other hand, he has allways been so healthy and strong. Your message gives me hope that we might have a little longer.Wish you and your mum all the best and strength.Iris. Flower1 Sun, 27 May 2007 00:00:00 GMT you may laugh at the coincidence but my mother was born in Hilvarenbeek in the Netherlands, my father in Amsterdam.  Sometimes i think it is the natural Dutch stubborness that keeps her going> Chrissy m Fri, 01 Jun 2007 00:00:00 GMT  On 6/1/2007 Chrissy m wrote:you may laugh at the coincidence but my mother was born in Hilvarenbeek in the Netherlands, my father in Amsterdam.  Sometimes i think it is the natural Dutch stubborness that keeps her going> Hi Chrissy, Hope your mother will keep that Dutch stubborness quite a while longer :)My husband is doing very well at the moment. I mean, we know his days are counted, but he is feeling very good and we enjoy every day we have.I wish you and your mum all the best. Will you keep me posted how she is doing?Greetings, Iris. Flower1 Tue, 05 Jun 2007 00:00:00 GMT Hi Chrissy and Iris,Sorry to barge into your conversation. My mum has been diagnosed with Klatskin about 5 weeks ago. Last Friday she had major surgery where an important part of her liver and the gallbladder were removed. She is now recovering from that and the doctor told us it's going to take a while. The past three days were very bad, but as of today she should start feeling a little better and improve day by day (doctor promissed). The prognosis isn't good because the tumor has spread towards the pancreas and the intestines. We sincerely hope that she has the stubborness of you Dutch folks, we live in Belgium. It gives me hope Iris to hear that your husband is still feeling kind of ok. Wish you both all the bestPat Patty64 Thu, 07 Jun 2007 00:00:00 GMT  On 6/7/2007 Patty64 wrote:Hi Chrissy and Iris,Sorry to barge into your conversation. My mum has been diagnosed with Klatskin about 5 weeks ago. Last Friday she had major surgery where an important part of her liver and the gallbladder were removed. She is now recovering from that and the doctor told us it's going to take a while. The past three days were very bad, but as of today she should start feeling a little better and improve day by day (doctor promissed). The prognosis isn't good because the tumor has spread towards the pancreas and the intestines. We sincerely hope that she has the stubborness of you Dutch folks, we live in Belgium. It gives me hope Iris to hear that your husband is still feeling kind of ok. Wish you both all the bestPatHi Pat,Sorry to hear your mum has this terrible kind of cancer. After the unsuccessful operation the surgeon explained to us that even after so-called "successful" operations they see the patients back within 4 years with the same cancer. It is very malicious.On the other hand I would have loved to have gained four more years with my husband. But, as I wrote before, we are living every day as a special gift. Loving the sunshine, the scent of flowers and each other.I hope you and your family can find the strength to do so. Wishing you and your mum all the best,Iris. Flower1 Thu, 07 Jun 2007 00:00:00 GMT Iris, Mom doing ok but has decided to stop all treatment, at least for now.  will keep you posted.  How are things at your end Chrissy m Thu, 07 Jun 2007 00:00:00 GMT Hang in there Patty.  My mom was diagnosed on her 75th birhtday and next week turns 76.  Her mother's family hails from Belgium they are Flemish and of sturdy stock.  Hang in Chrissy m Thu, 07 Jun 2007 00:00:00 GMT  On 6/7/2007 Chrissy m wrote:Iris, Mom doing ok but has decided to stop all treatment, at least for now.  will keep you posted.  How are things at your endHi Chrissy,We had a talk with the doctor yesterday about chemo. That would not help for the bile duct cancer (Klatskin), but there would be a slight chance that it could slow down the spreading. But we are having wonderful days now, without any pain and my husband said no the the chemo. He is not choosing maybe 6 weeks longer living, but loss of quality of life.He is very strong and calm and I am trying to be. I don't help him by crying, I do help him my loving him every minute of the day for as long as I can. To relatives, collegues and friends who are visiting us we see that our strength helps them too. We had a happy life together, got two wonderful sons who are doing well and have become social and nice men. What more could we want for?So, overall, we are doing well. I hope that it will be the same with you and your mum. Be there when she needs you, the crying comes later. And even then still with the richness of a loving memory of what was good.Please keep me informed about your situation. I am thinking of you.Love, Iris. Flower1 Fri, 08 Jun 2007 00:00:00 GMT Hi Chrissy and Iris,Thank you both for your very kind responses. My mum is doing better. Today, for the first time in weeks, I recognized her as my mum. The stomach drain and wound drains were taking out. She smiled and so did we. And yes Chrissy I think we are a sturdy lot. Even though she is making progress at this time I know the odds and unfortunately they aren't promissing. But as you've shown me, enjoying every day that we have together is worth living. At this time I can only hope to take her home before the 30th of June. My mum and dad will be married for 45 years then. It would be great to celebrate that at home.Thanks again for your responses. I wish you both the very very best.Pat  Patty64 Fri, 08 Jun 2007 00:00:00 GMT Hi Iris,Has your doctor mentioned the use of LDN (Lowdosenaltrexone)? If you type this in in google you'll find alot of information there. From what I understand it seems to work with alot of cancers, slowing down the growth of the tumors. I am certainly going to talk to the doc who's treating my mum.Hope your husband is still doing well.    Patty64 Tue, 12 Jun 2007 00:00:00 GMT Dear Pat and Iris< I am thinking of you both from across the Atlantic>  Mom turns 76 on SUnday so we are all celebrating/ This i think will be her last birhtday.  Her 75th wasin hospital after tumor had wrapped around small intestines, so i think it is a miracle that we still have her.  Hang in there all and yes, smell the flowers and love each other now.  Chrissy m Fri, 15 Jun 2007 00:00:00 GMT  On 6/15/2007 Chrissy m wrote:Dear Pat and Iris< I am thinking of you both from across the Atlantic>  Mom turns 76 on SUnday so we are all celebrating/ This i think will be her last birhtday.  Her 75th wasin hospital after tumor had wrapped around small intestines, so i think it is a miracle that we still have her.  Hang in there all and yes, smell the flowers and love each other now.  Hi Chrissy,Thanks for your answer. We celebrated Fathers day in a nice bungalow in Belgium. We made walks in the beautiful woods, visited caves, saw Ice Age 2, talked and laughed. So, spent a very worthwhile weekend with our two sons. A weekend to remember a very long time.Hope you had a good mothers birthday. In my heart I said hello to her and wished her all the best. Hope it helped a bit.Please keep me informed how she is doing. She must be a very special and brave woman and she is lucky to have you and all the ones who love her. "Someone who is loved, will never be forgotten".Love, Iris. Flower1 Sun, 17 Jun 2007 00:00:00 GMT Pat and Iris let me know how you are doing?  mom is ok but very tired< next scan on july 16 with results on july 18>  we pray but she is throwing up alot so i fear spread>  But it may be meds,, know in a week  Chrissy m Fri, 06 Jul 2007 00:00:00 GMT  On 7/6/2007 Chrissy m wrote:Pat and Iris let me know how you are doing?  mom is ok but very tired< next scan on july 16 with results on july 18>  we pray but she is throwing up alot so i fear spread>  But it may be meds,, know in a week Hi Chrissy,Please let me know the results after the 18th. This is a terrible kind of cancer, but my husband Peter and I feel blessed with every good day. As you know he refused chemo, since it couldnot cure, only lengthen his lifetime. The stent is still doing its work very well; our next appointment is the 11th but we think there will be no (bad) news, since he is doing so fine. He even gained 5 kilo's weight since he is out of hospital.I am thinking of you and your mum and hope she can hang in there a while longer. Anyway you gained some quality time with her, when she stopped chemo.All the best and hope to hear from you,Iris. Flower1 Sun, 08 Jul 2007 00:00:00 GMT will do Iris,, she is siting in the sun and having good dyas, hope it lasts Chrissy m Fri, 13 Jul 2007 00:00:00 GMT  On 7/13/2007 Chrissy m wrote:will do Iris,, she is siting in the sun and having good dyas, hope it lastsHi Chrissy,Here the 18th of July has passed and I have been thinking of you and your mum. Do you have any results from the tests?My Peter is doing so well at this moment and I really hope it can be the same with your mother. Peter started working, first half days; than a whole day and this week he went three full days to his work and is enjoying it. He also played squash again and he looks much better than a few weeks ago.We know the timebomb is still ticking, but are having very good days and weeks now and enjoy it.Hope to hear from you soon, much love,Iris. Flower1 Wed, 18 Jul 2007 00:00:00 GMT  On 7/18/2007 Flower1 wrote: On 7/13/2007 Chrissy m wrote:will do Iris,, she is siting in the sun and having good dyas, hope it lastsHi Chrissy,Here the 18th of July has passed and I have been thinking of you and your mum. Do you have any results from the tests?My Peter is doing so well at this moment and I really hope it can be the same with your mother. Peter started working, first half days; than a whole day and this week he went three full days to his work and is enjoying it. He also played squash again and he looks much better than a few weeks ago.We know the timebomb is still ticking, but are having very good days and weeks now and enjoy it.Hope to hear from you soon, much love,Iris.Hello Iris,You and I seem to bounce back and forth from this particular message to the one called "Anyone out there?"   Yes...I too am anxious to hear about Crissie's Mom's results...maybe tomorrow she will have some time to let us all know.It's funny how just a little twinge or a little ache can make me paranoid!  I, like your husband, feel good now but know our world can come crashing down.  Since yesterday, my esophagus has wanted to act up...when I swallow food, it wants to "say no!" and give a little ache.  Hospice nurse wants me to tell her if it continues.....beach comes first!  Sorry.  6 more days but who is counting...Hot and humid days here in South Carolina.Regards, Pam Pamngreenvillesc Wed, 18 Jul 2007 00:00:00 GMT Hi Pam,Yes, there are a couple of patients and caregivers who bounce about. Chris' mum has been doing so well, that I'm really hoping she still will have some time.However I do realize this is a very nasty kind of cancer. Look most of us, I'm torn between hope and reality. I can promise you, it's almost as bad for a caregiver as for the patient.When I see my Peter running around again, getting some suntan and a round butt (sorry) again, I really feel lucky. But we both know this can and will change, only not when. Peter has a calm peace in his eyes; he says he isnot scared and I do believe him. He also says he is not fighting, just telling his body what he wants from it and enjoying that up till now that works. The future is far away, he feels. And to-day is good.Pam, if you like to mail me directly, I can tell you that you can do that to irisvantulder. This site doesnot accept mail-addresses, so here comes the second part: at hotmail.comIn Holland we had a completely outrageous warm month of April. But that was it, it looks. It's raining a lot now. So we are still waiting for some nice days in a row to come and we will leave for a trip to our beachy island.I wish you a lot of warm sand between your toes.Iris. Flower1 Thu, 19 Jul 2007 00:00:00 GMT thank you all so much for thinking of me and my Mom.  We still not have full results from the scan but tumor has increased a bit and bile duct dialated.  She is vomiting very badly today and yesterday and we may have to admit her, even she is starting to want to go and she never wants to go.  Iris i see on another post that your husband is working?  Great news. Please all keep me posted Chrissy m Fri, 20 Jul 2007 00:00:00 GMT  On 7/20/2007 Chrissy m wrote:thank you all so much for thinking of me and my Mom.  We still not have full results from the scan but tumor has increased a bit and bile duct dialated.  She is vomiting very badly today and yesterday and we may have to admit her, even she is starting to want to go and she never wants to go.  Iris i see on another post that your husband is working?  Great news. Please all keep me postedHi Chrissy,Thanks for your news. This is such a nasty kind of cancer and we all, caregivers and patients, know the timebomb is ticking. I keep thinking of you and your mom and wish you all the strength that is needed.Much love, Iris. Flower1 Sat, 21 Jul 2007 00:00:00 GMT