kvolland
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kvolland
SpectatorSam –
Welcome to our great little family, sorry you had to join us but you will find a great amount of support from everyone. Sounds like you have had your hands full but have been plugging away at it. My biggest question is….have you looked into a second or even third opinion? We are all big advocates of talking to as many people as possible.
Weight loss does seem to go with this. My husband lost about 80# total over the last year. He’s starting to gain it back now. Protein is the biggest thing to keep her going. We did a lot of protein shakes with frozen fruit, ice cream, yogurt, protein powder and milk….blend it all up. My husband loved those. Carnation Instant Breakfast works good too along with all of those things like Ensure, Boost, etc. Those work great.
I don;t know a whole lot about clinical trials since we didn’t have to go that route. But there will be plenty of people who will chime in that have.KrisV
kvolland
SpectatorSara –
So sorry for the loss of you sister. Know that she is at peace now and will always be a part of you. Keep yourself and family wrapped in those wonderful memories of her.KrisV
July 26, 2014 at 6:08 pm in reply to: A question about the results of chemo with radiotherapy #83836kvolland
SpectatorJane –
I understand your mom’s reluctance to research into the disease….my husband was the same way when he was diagnosed. He let me do all the research, all the talking and all the decisions. If if had not been for me being there I am not sure how things would have turned out. And there were certain things I didn’t want to know in the beginning such as what stage he was and what his prognosis could be. Once we got through the worst of it then I asked.One thing I will add is that there are plenty of people out there who are living with “stable” disease meaning that they still have cancer but through a variety of strategies are living with little or no symptoms…..they are treating this more as a chronic disease rather than what it is.
I would say that having you mom maybe take a tape recorder with her to the MD appt so she can record the conversation or have her put you on speakerphone with a cell may help you hear what is being said, rather than getting it second hand. I know we dis the speakerphone a lot when my husband was in the hospital and I couldn’t be there with him.
Good luck and keep us posted.KrisV
July 26, 2014 at 4:53 am in reply to: A question about the results of chemo with radiotherapy #83830kvolland
SpectatorJane –
Welcome to the family – not one you really want to be but it’s the best family. My husband had chemo then chemoradiation but he did have a resection first which appeared to be successful. I would think the goal for your mother might be more in line with shrinking it enough to make the tumor operable. We have had many people who have gone that route.
And I am with Lainy second and third opinions are very important. You really want to make sure that the doctors you are dealing with have seen and treated cc. It may mean traveling to a major cancer center but well worth the extra time and travel.
Keep us posted.KrisV
kvolland
SpectatorSis –
Medicare can be quite frustrating and quite often the system works backwards from what it should. Each state is handled differently so what Medicare will pay for in one state is not necessarily what you will get in another. Just as Medicare reimbursement rates are different from state to state…..Medicare actually punishes states that use their Medicare dollars wisely by giving them less money and states that don’t manage get more. They also won’t pay for a lot of preventative stuff that would save millions of dollars in the long run……an example is a quadraplegic who has an extremely high risk of pressure ulcers, they will not pay for a pressure relieving mattress until the person has bed sores. So let’s close the barn door after then horse ran off.
It very frustrating and I battle it every day. One thing I will say though, is if you are denied something because it is not covered in your state then contact your Representatives and Senators, that can sometimes get those rulings changed.KrisV
kvolland
SpectatorI didn’t have too many issues with it. Of course, I drew Mark’s blood myself since it was time to flush the port anyway and we aren’t seeing the Onc until September. I was glad I had read about some of the problems people were having because I hadn’t look all the way into the box.
I didn’t have any issues with the pickup. No one even asked what was in. I called the number and they just came to my work and picked it up.
I could see where there could be problems though if you don’t understand how the lab system works with orders and billing and all that stuff.KrisV
July 25, 2014 at 9:13 pm in reply to: HELP: Cholangiocarcinoma, severe abdominal pain, fecal impaction #83804kvolland
SpectatorPyderman –
Fecal impaction is very tough to deal with but it can be. We see it a lot with chronic pain medications use. I would almost guarantee the pain meds caused this and once she gets the impaction gone then she should probably take something routine to keep it from happening again. I am with Gavin that Lactulose works quite well and may be just then thing right now. Another trick we use is warmed prune juice with a dose of Milk Of Magnesia (not sure if they would can it the same over there)……we call it a brown cow….you may ask about it to get her going.
My husband has a terrible time with constipation since his surgery and the fact that he takes chronic low dose pain meds for his arthritis. He takes 250mg of stool softener twice daily and then a total of four 8.6 mg Senokot divided into two doses. Then he also found a black cherry and apply juice that helps too.
But definitely stay ahead of it rather than trying to play catch up but don’t stop the pain medications even though that seems to be the right thing….you want her comfortable and the impaction will clear.KrisV
kvolland
SpectatorDearest Sharon –
Glad that you found us here and that you come bearing good news….successful resection is the best you can here. And to answer your question you can be cancer free. My husband was diagnosed in May 2013 with extrahepatic cc (Klatskin’s tumor) and had a resection in June 2013, second set of margins were clear but he had a positive lymph node so he was stage IIIb and a year later he is cancer-free. He had 6 months of adjuvant chemo Gemcitiabine/Oxaliplatin and a two month break then 6 weeks of chemo and radiation (5-FU and IMRT) His last scan in June were clear and the doc expects them to stay that way.That being said it was not without it ups and downs. 14 hours of surgery, 4 hospitalizations total, weight loss of over 80# all together, having to do IV fluids at home. Was it worth it? Yes I believe it was for him.
Everyone has the chemo to not chemo question. I am sure other will answer but it is a frequent question on here. If you go to the heading you will find a search tab and in that you can search specific topics such as this.
Good luck and keep us posted.
KrisV
kvolland
SpectatorWell that certainly sounds good to me. I know I have dealt with esophagitis and gastris both during all the stress of my husband’s cancer. I spent four days in the hospital sure I was having a heart attack…..just stress and inflammation. I think in your case it my be good to get a definitive answer so that you can get rid of the what-if worry. I will continue to send positive thoughts your way.
KrisV
kvolland
SpectatorWhile I have not done this myself I know of people who have had success with both chronic and acute pain. I believe it would be worth a try and it certainly won’t hurt anything.
On this topic, is your husband on any oral pain medications and if so what is he taking? And please tell us a little more about what he has and where he is being treated. We may have even more information for you.
KrisV
kvolland
Spectatorjtaylor –
So glad Deleware joined in with the rest of us…of course I live in Washington state so we have gone on beyond that. To answer you question, there really is no answer. I would try to find a reputable dispensary locally and talk to someone about different strains and how much to start with. I know there are oils available and then can be added to food or drinks. There is also a cream that can be applied to the inner arm. I talked to a local dispensary about my husband (although he refused to use) and they were full of information. I will also tap a friend of mine how understands this and see what he has to say.KrisV
kvolland
SpectatorHelen –
So sorry you had to join this group but you will find support that you and your friend need. You are indeed a special friend to Bonnie. I wish you both as many special days as possible.Hugs,
KrisVkvolland
SpectatorDianne –
Well I am with Lainy….after beating cc you can handle just about anything now. My husband is the reverse. He had his lymphoma first as a teenager then cc at 49. His was luckily Hodgkin’s but still required big doses of radiation and surgery. I would give the same advice to you as anyone….second opinions are always big. And throw those survival rates out the door, they are looking back not forward and we all need to look forward.Hugs,
KrisVkvolland
SpectatorSuzy (and Crissie) –
You are both devastated by the loss of a loved one but please don’t let that worry about “what if” rule the rest of your life. There is very little evidence that cc is hereditary so having genetic testing may not be worth cost. I would talk over with your insurance and see what they will pay for. It may be that they would pay for liver enzymes and maybe cancer antigen testing (CEA or CA 19-9) and while none of that is 100% remember that nothing in life is guaranteed. Live life to the fullest and appreciate what you have. Be very aware of your body and what is normal for you. If you feel like things have changed then follow up with your doctor.KrisV
kvolland
SpectatorThis is a disease of roller coaster moments. Just when it seems you will be getting off the coaster it sends you on another dizzying round on it. I know it seems overwhelming right now but things will get better. Getting the bleeding stopped and seeing the bilirubin go down are great. Infection with stents is very common but should be easily treated with the antibiotics. Once the infection is down then everything should stabilize and you can start looking ahead at what the plan will be.
Hang in there.
KrisV
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