kvolland

Sam –
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

Jane –
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

Sis –
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

Pyderman –
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

Well 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

jtaylor –
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

Dianne –
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,
KrisV

This 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