recently diagnosed mother
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Hi Andreah
Has your Mom tried the fortijuice/Ensure drinks? They may help you Mom with her weight loss. My Dad was given these after his stent operations and he is on them now as the jaundice has started to effect the amount he wants to eat.
Is she drinking? If so how about making smoothies.
Janet,
Unfortunatley Dads second opinion has come to nothing but considering he has been jaundiced since February, he has done extremely well, and continues to amaze us all. Your Mom sounds a fighter like my Dad. He takes ciprofoxin (sp) to keep any infections under control, cod liver oil, and lemon juice in hot water every morning and night. Luckily he is in no pain, just tires more easy and has to eat little and often. Is your Mom jaundiced or just too weak to have chemo?
Good luck and best wishes to you both
Andrea
Margaret, Thank you so much for your comment. It gives me energy honestly! I let my mom read it as well and she feels stronger than ever to keep fighting. I do love her oncologist. He has given us as much time as we want, we’ve called him on his cell at 10:00pm and he answered and wasn’t grumpy about it hehe He too is apart of a team of drs that meet once a month to discuss cases such as my mom, so thats encouraging. My mom, Diane, is a very faithful person, and definitely isn’t laying over accepting this thing. I’m glad you decided to be active on finding the right doc for you, you sound like a wonderful person, and a great caregiver for your husband.
Jaynus, I’m sorry your mom can’t go through chemo yet. Im worried about my mom now because she is losing weight so quickly. She just lost 4 pounds in 4 days. She isn’t sick, but is just afraid to eat. I really feel helpless about th whole thing. I’m determined to find SOMETHING she likes!!
Gavin, she is on gemzar/cisplatiin.
Thank you all for your encouraging words. I’m glad to know there are others I can relate to.
Andrea
Andreah:
Hrumph! Doctor’s cannot ‘estimate’ how long a person has to be on this earth! Case in point, just about 13 months ago, the oncologist that my husband was assigned by the Veterans Administration told my husband Tom that he had a new inoperable tumor in his liver and that he had 6 months to live. When I questioned him about Chemo/radiation, he said that Chemo and/or Radiation were not an option. We did not listen to that, and sought 2nd, 3rd and 4th opinoins. Thank heavens we did!
He did go through radiation and oral chemo (pill form) and the tumor is dead. Granted he now has 5 new tumors and a mass in the pelvic area, and he is now undergoing IV Chemo…but his new oncologist is extremely optimistic that they can help him. After all NO ONE HAS AN EXPIRATION DATE stamped on their behind!
As we enter our 13th month of life after his dreadful 6 month diagnosis we have learned to never give up, ask what else can we try, never take no for an answer and keep being optimistic. Look forward to the future and don’t give up hope. Make certain that the doctors and oncologist that are treating your Mom are familiar with CC or that they are consulting with other doctors that have had experience with CC! Tom’s new oncologist consults regularly with doctors from St. Luke’s in Milwaukee and they also discuss his case with a weekly tumor board to get information….so rather than him having one doctor he has a team of doctors involved in his treatment.
The road your mom will travel with CC will have a lot of bumps, twists and turns, but she could still be here 2,5 or 10 years from now because they are learning new things every day about CC. The best thing for you and your mom to do is to educate yourselves about CC, and this forum is great for that. Write down your questions so you will remember them and ask her doctors. And they should take the time necessary to fully answer your questions, after all they are working for your mom! When Tom was originally diagnosed in Mar. ’08, I had a two page list of questions. The first doctor that wanted to do the initial surgery appeared to be a bit ‘put out’ that I was asking so many questions and he did not give me any ‘warm fuzzies’ so we sought a 2nd opinoin. The 2nd doctor took the time to answer each of my questions, did not rush us and in fact, I think that appointment took about 2 1/2 hours because she explained everything to us. She did the surgery and was awesome during his three week stay in the hospital. The first doctor was appalled when I called him and cancelled the surgery, and 5 minutes after my call, he was on the phone to us wanting to know if we were going to reschedule the surgery. He was very upset when I told him ‘no’ and that we were going with another surgeon outside of the Green Bay area. (Hummm, no new car for his wife in ’08)
But, my thought is that if you don’t trust the doctor, why would you let that doctor cut out over half of your loved ones liver? You gotta be able to put all your faith in that doctor, and frankly I could not do that with the original surgeon who planned to cut on my hubby.
So don’t give up hope! Build some happy memories with your mom. Take one day at a time. There are many CC Patients on this forum that have outlived their doctors predictions of how long they will survive.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Andie youre dad has not had any chemo at all to date? Sounds like he is doing very well considering! My mom can’t have chemo either and still takes care of herself. She is very tired by the end of the day but pushes through it. She is doing accupuncture and chinese herbs for energy since we have no other options at this time. She is also on pancreatic enzymes to help digestion, strong pain meds and stool softeners along with vit B, D, iron and fish oil. (She had a little bit of vitamin dificancy show up in her blood work). She is fighting her way through. Hopefully this second doctor will be helpful to you we are currently waiting for a second opinion as well our first oncologist offered nothing unfortunately.
hope everything works out for him
JanetAndrea it is good to hear you’re mom is strong enough for chemo. Our stories sound very similar only my mom cannot have the chemo right now they thinks she is a littly too weak, Be strong and supportive for her she is a fighter! Just like my mom is she is trying so hard and I know have to be strong around her.
take care of yourself
JanetHi Andreah,
Welcome to our cc family. I’ve been coming here since my Dad was diagnosed in April after 2 months of jaundice, and it really has helped me get through the past months, everyone is so kind.
One of the first things i was told was no one has an expiry date stamped on them, and that is so true. I told one doctor my Dad was not a statistic, and that they shouldn’t say months etc.
We were told Dad had 2 months in April as he was inoperable. 3 days later we were told by another hospital that chemo would be an option once they could sort out his bilirubin level. From April to September chemo got cancelled everytime due to stent problems arising everytime chemo was due. On september 27th after another stent was attempted, Dad was left with an external drain and told nothing else could be done, and chemo would never be possible. Time we could expect 3 – 4 months. 2 months down the line we have just recieved an email from another Doctor in Leeds who is willing to see Dad. It may lead to nothing but we have nothing to lose. Dad is in no pain, obviously he is weak due to the bile taking all his nutrition, he tires easy but is able to care for himself, so even though they thought hospice care would be needed by now, it hasn’t. So much for the 2 months he was given in April.
An amazing oncologist is worth his weight in gold. Your Mom sounds like she has an amazing attitude too, which is half the battle.
Here’s hoping your Mom is a miracle, I hope everyday my Dad becomes one too. And miracles do happen.
Take care of yourself and best wishes to your Mom too,
Andrea
Hi Andrea,
Welcome to the site, and yes, your sister in law is right. Not only is this place a great source of information, but it is also a great source of support and you will get a ton of that from all of us here. So I am glad to hear you say that you will be visiting often, and if you have questions, don’t be afriad to ask them and we will help if we can.
I know how you feel right now. It is shocking to hear when a loved one is given a diagnosis of CC. My dad had no symptoms, was in fine health and then the jaundice appeared and 3 weeks later, he was diagnosed with inoperable CC. One thing I would say to you is please not try and put too much faith in statistics and timelines, as who really knows what lies ahead. You say that your mum has an amazing Onc and that is good to hear, and we have people here who have had good results from chemo. What chemo is your mum on, is it Gemcitabine and Cisplatin?
Keep coming back here, we know what you are going through right now and we care.
My best wishes to you and your mum,
Gavin
Hi everyone. I’m new here, my sister-in-law said its a great place for info, and I agree. My mom, 53, was diagnosed a month ago and just yesterday had her second round of chemo. Its pretty grim…she was given 3 to 6 months, but if the chemo works hopefully a year. Its amazing how quickly things progressed. She was just belching a lot and couldn’t eat very much and then bam, 3 to 6 months gets thrown at you. I obviously am still in the grieving process, but she’s been amazing. She has been tolerating chemo easily, but has had blood clots. She will have to be on blood thinning meds for the entire time she has cancer.
Has anyone else had a diagnosis like this and lived longer? Does chemo even work? I’ve had 2 aunts die from breast cancer, so I have kind of a negative outlook on this. My mom has an amazing oncologist. He said she could be his miracle, his scientific breakthrough! I’m praying for that. But I’m just glad she isn’t having harsh side effects so she can live each day somewhat normally.
I’m really thankful for this website, and will be visiting often!
Andrea
Hi Janet!
How are you enjoying the cold? I just read that Calgary is officially the second coldest place on earth – only a weather station at the south pole has us beaten – how ridiculous!
I’m sorry to hear about the growth – it’s always such a blow when we hear bad news. I think it’s great that you are going to speak with a second oncologist…. maybe they will have other ideas. I’ve never head of photodynamic therapy being used here, but I know people have had it for this cancer (Gavin’s father comes to mind – maybe read a few of his posts and when you meet with the second oncologist you can ask about it, armed with a bit more knowledge. I know Gavin would answer any questions you have)!! I am so glad to hear that she’s had a burst of energy the last few days… I hope it lasts many days to come!!
Dad’s memorial bench – we went through Friends of Kananaskis and after months of trying to get it done (the girl dealing with us actually left and we didn’t know), it has finally been put in right in Mount Kidd, which is where my family camps in the summer and up until last year, winter camped as well. We’re thrilled since it’s somewhere we can visit once he’s gone and know that he’s right there with us. My sister came up with the idea of getting it for him, and it’s perfect for us, and him since he loves in there so much. We are just waiting for the plaque to be put on and then we’ll go out with Dad. There’s more information on http://www.kananaskis.org if you are looking for it… just go to programs and it’s listed on the right hand side.
I hope you and your Mom have a great week. My husband and I are off to Banff tomorrow for a few days, I hope it warms up so we can enjoy being outside a bit!
Jen
Hi Jen good to hear from you! I read a general update you had posted a while back, but I can’t seem to find it now. Is there gonna be a bench in you’re dad’s name? That sounds very nice. I’d love to hear the story. How is he holding up? January is getting closer and closer every day. If you and him both really believe I have every faith he will make it to that point and further. If you’re family has strong energy it will resignate to him. I’m starting to believe in things I would have never gave a second thought to as you can see!
My mom’s MRI came back with significant growth in the nodes as well as liver and ducts. Don’t know exactly what “significant” means and if that is considered a lot of growth or a little but I guess it doesn’t matter. I’m not sure what i think of our oncologist I get the impression he doesn’t see her as a person worth his time. All he talks about is ways to keep her comftorable and never any real treatment options. He has nothing to offer not sure what to make of that. I guess he means well. We are gonna try another opinion with a different oncologist the nurse says that’s commonly done and she is gonna arrange it for us. We have to wait a few weeks. We asked him about photo dynamnic therapy and he said it’s not used for her cancer, but then i read about it being used on bile duct cancer all the time. It’s very confusing. She had lost a lot of energy there for a while and increased in pain so I knew there was growth. She also lost her will to fight along with the energy and had a bit of an emotional breakdown. Needless to say last week and weekend was horrible for me! Her and I both had reached the lowest point possible since this whole thing started but that night I prayed so hard for her and sure enough the next morning she woke up with a surge of energy which has lasted 2 days now. Not sure how to explain it but it doesn’t matter my point is things can change so quickly from one moment to the next. If it looks bad it will turn around at some point.
Let me know how it’s going
JanetHi Janet! Were you as surprised to look out your window this morning as I was? Getting downtown was a nightmare this morning! People seem to forget how to drive the second it snows!
I’m glad your Mom isn’t experiencing much change right now, that is really wonderful! I hope the MRI goes well and doesn’t show change either! It’s good that she has energy – the more she’s up and moving around the better she will continue to feel,and the more energy she will continue to have.
As much as I’d love for Dad to try accupuncture or something similar, I would have to drag him by his feet to get him there – ha ha. Not something he’d be willing to try, I’m afraid. His pain meds are seeming to keep everything pretty level… he will take something if he has breakthrough pain, which is working for him. As far as his diet goes, we honestly give him whatever he is craving. He eats so little now that if he wants a burger from somewhere then that is what he gets. He has been craving caesar salad lately which is funny, since salad isn’t something he’s EVER craved in his life! Not the healthiest choice, but at this point, having him eat a lot of calories and extra fat isn’t just allowed, it’s encouraged!
I hope you and your family are doing well. Are you finding that you are getting a bit more support now that your Mom has an oncologist? Dad has Dr. Lupichuk and she’s wonderful with him… a really really great doctor.
Talk to you soon (better get back to work)!
Jen
Jen How is your dad doing now? Has he picked up a bit of energy? My mom is still the same, not better not worse. She’s having an MRI soon to see if the cancer has spread. Currently it is in her lower abdominal cavity as well as liver but I’m praying it hasnt moved much. Her energy lever is not bad. She has been drinking some chinese herbal teas and getting regular accupuncture which I think has helped a little. If you’d like to know the clinc she’s going to i’ll let you know. I am also going to speak with someone who specializes in raw food diet to try to help her out. Let me know if you want me to pass any info along and how you’re dad is doing
take care
JanetJessica I am so very saddened to hear about you’re husband. He is the same age as me and we are only days apart on birthdays. This forum is a great place to release your feelings and you will find lots of support. I have to come to terms with the sad fact that i have a hard road ahead of me. Just remember that he no longer has pain and he is at peace. Time will heal everything for you. Try to be strong and come chat as often as you need.
thinking of you
JanetHi Janet,
We had Dr. Sutherland, but boy our stories are sure similar. We definitely saw the residents more once they decided surgery was not an option (they didn’t even open Dad up… I’ve always wondered why that was, but no point trying to find the answer now). I still think they should have forwarded your Mom’s file to get her set up with an oncologist right away, but like you said, it’s in the past.
Hope you are doing okay.
Jen
jen I have to make this brief on my way to work. Her surgeon was Dr. Elijah Dixon. She actually had an incision and exploratory surgery before they diagnosed her with stage 4. Did you’re dad have an incision as well?
Im thinking that might have been the reason they waited so long to send her on to oncology (healing time and all)?? Not sure though. I guess that’s neither here nor there it’s in the past. Let me know if you had the same surgeon. We didn’t have a very good experiance with him. It was evident he gave up on her once she was past surgical intervention. Never returned phone calls and we never saw his face again afterwards during all the times she was admitted in and out of hospital after the surgery. We only saw residents from his team and even that would take forever.We’ll chat again soon
Janet
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