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Hi All -
I know I have been absent off here for awhile. Things have just been crazy between work and dealing with all the other things.
We were at the doc today.....3 month check up....It was mixed news. His tumor marker - CA 19-9 - was elevated but his CT scan and Chest x-ray were both clear. ONC is not super worried since it's not really high. It's 115 today and was at a high of 999 at time of diagnosis. It has bounced all over the place during treatment so he's not worried. We are going to back in two months rather than three to check everything again. If the numbers trend up then he will look more for some sort or metastasis.
My only concern was that he has been so tired, even more so than when he was going through treatment. He works then comes home and sleeps then sleeps most of the weekend. He's even napping at work on his lunch. So not like him so I have been working close to 60 hours a week....that's not helped either....plus doing all the house stuff. So I am beat. His blood counts were all good, no anemia and liver functions were great. So we see his primary doc soon and have thyroid function tests done. I don't think that's been done since he started all this. If that's not it then we are going to look at a different anti-depressant. He just finished 8 weeks of physical therapy so he is stronger....just sleeps a lot.
So I am calling it good news. There is no definitive cancer so that's good news.
I will try to be a little more present, although I do often read what is posted, I just didn't feel like i had a lot to say most of the time.
Seems like you just can't win. You need to remember that it's not a race to see if you can have every side effect that the chemo produces.
Technically Mark missed two of his twelve doses of Oxaliplatin when we were doing just chemo. He had anaphylaxsis 15 minutes into his 10th dose so they stopped and then infused dose 11 really slow and he did fine but 15 minutes into the last one he got into trouble again. They offered us two doses of cisplantin to make up for it and he opted not to. Felt like almost 12 was good enough.
You just have to decide if the possible good effects out weight the know bad effects of the chemo. I know you will make the best decision for you.
Sorry I am getting into this a little late. My husband was diagnosed in May 2013 with Klatskin's tumor. It was only diagnosed after he turned so yellow he looked like someone had colored him with a yellow highlighter, even his eyes. He thankfully has had no itching at all. His bilirubin levels got pretty high just before surgery so they put an external stent in to drain off the bile. To be honest I have no idea if it worked or not since he had complications that landed him in the hospital 48 hours after it was put in. He had surgery 4 days after it was put in then they took it out a month after his surgery.
He has not had a lot of pain with this. He one in awhile had some pain like his gallbladder was going bad but never enough for me to even make him go to the hospital.
One thing that can help breakdown the bilirubin is exposure to sunlight. When we deal with babies that have high bilirubin right after birth we put them in the sunlight to help break it down and lessen the jaundice. We did that some with my husband before his stent. Not sure how much it worked but I am sure it didn't help. Also make sure she is drinking plenty of fluids to help flush it out.
Hope things go well.
Hahahaha! That is too good. We have had that issues with raccoons in the garden before. They wreck havoc on it. I can't feed the birds anymore because they tear up the feeders so bad. Then I worry about our dog since we have spent so much money on her that if she got tore up by a coon I would pull my hair out.
But sweet corn sounds so good. We get some from the East side of the mountains every year but it's not super available. You are lucky,
You go girl, you can do it. I know you can. Just remember that each round is a little different and while this on might be a little rougher, the next one might be even easier. I know Mark felt that way about it.
Something I just thought of too about the dry heaves.....have you tried something like GasX.... which is simethicone. A lot of time dry heaves can be caused by excessive air in the stomach and this might help break it up some. Worth a try if you haven't tried it yet. Glad it doesn't bother you too much though.
Hang in there. You are always in my thoughts.
It definitely sounds like you have done a great job of getting her the best treatment possible. Keep up the good work and hopefully you will find the perfect one for her.
I would say jerk face is pretty mild compared to some words I could say and my younger sister....who is the middle sis....has even stronger words that I could never say in polite company. It's okay to vent because we have all been there and vented many times over.
I have been where you are mad.....really mad that my husband has had to through this twice in one lifetime....mad that my 20 year old son had to worry about cancer already....mad about a whole lot. I always felt mad was better though since it doesn't paralyze you the way sadness can. I did the same as Lainy....loud music and the car. I too never got pulled over or ticketed for disturbing the peace (I would if they heard me sing).
We are always here.
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.
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.
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.
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.
Well, I know this is about the cc and Mark but I still have a milestone I want to share.
As many of you know my then 19 year old son was diagnosed with thyroid cancer at the same time Mark was diagnosed with his cc.
My son had his surgery 7-11-13 where they took out 90 lymph nodes in his neck of which 30 were positive for cancer plus his thyroid and part of a blood vessel and some muscle that were affected. He had his one year follow up with his doctor today and he is still CANCER FREE!! I can't believe I get to (or have to) say that about two close people in my life. He saw the endocrinologist that is following him and other than needing to increase his thyroid medication again, he was absolutely fine. Four more clear checks and they will consider him CURED! There's another good word.
Thanks everyone for your positive support and thoughts through this. Love you all.
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.
I 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.
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.
Have fun Lainy and let us know how it went.
Oh Lainy that was too good. I could just see it and that would be exactly how I am.....some of it is being a nurse and our humor runs a little black anyway. My kids asked me once what I wanted done and I said I didn't care since I was dead and it didn't matter.
I have passed that humor on to me kids too....some may not find this next very funny but I did and still do. My youngest son's dad passed away about 2 years ago from alcohol related problems and left none of his wishes know. I vaguely remember from many years ago that he wanted to be cremated so I told my son that was what I thought. We were waiting for the funeral home to show up with the coroner and sheriff's deputy still there (he died at home unplanned so it was a circus) as we were discussing this. I asked my son what he wanted to do with dad's ashes and he absolutely dead-pan tells me he is going to take them to the little Minute Mart where his dad bought all his booze and flush him down the toilet hoping that he clogs it up. I though the sheriff was going to need CPR after that. Black humor but also tongue in cheek because my son had tried really hard to get the Minute Mary to not sell to his dad alcohol when he would come in obviously intoxicated. We ended up having his dad placed in the crypt with his mother, my son's grandmother.
So yes you cloud see where I would find that so very funny.
Dearest 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.
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.
While 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.
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.
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.
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.
Suzy (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.
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.
Posts found: 1 to 25 of 579