March 17, 2007 at 4:47 pm #15301olejParticipant
My wife(55yrs.) was diagnosed with cc about a week ago. The cancer has spread to her a lymph node near her liver and possibly further. She is set to start chemo and radiation ASAP. We are at Virginia Mason in Seattle.
We didn’t even know she had a problem until mid January when they did a CT scan and found her bile duct didn’t look right. They did a ERCP with biopsy on her which came up negative for cancer. We were happy to hear that, but on a later CT scan they saw a lymph node that was inlarged. They did a needle biopsy and found it was cancerous.
She is very tired most of the time, but does have spells where she will feel better. The nauses is bad most of the time, but for some reason she feels better if she eats something.
So I guess our situations are very similar. Just wanted to say hi start corresponding with people that have the same problems we do.February 28, 2007 at 11:03 pm #15300davidhParticipant
I am so sorry to hear your husband’s report. We were very shocked recently to get the latest scan for my wife who did great on chemo (See A Shock for Us..just above your posting). A couple of things from her experience – She was given Kytril for nausea which I believe works chemically similar to Zofran, but I believe it’s very expensive if your insurance won’t cover it. Also, she had been given Reglan in the hospital which worked well for her also. The great thing is that Reglan works differently than Zofran or Kytril, and can be taken in between doses of those drugs, and is inexpensive. Check with your doctor on that. Also, my wife didn’t have any actual vomiting, just felt nauseated and didn’t want to eat. We discovered some of this may have been due to a bit of dehydration, because she didn’t want to drink either. Then, after 4 months of chemo, a Nurse suggested drinking as much Gatorade as possible. She found she could drink that without feeling nauseated, began drinking about 64oz per day, and completely ended her “down days” after chemo when she was in bed totally exhausted for days 2, 3, & 4 after chemo! This may not help your husband (it didn’t help a fellow patient w/leukemia at our cancer center) but it’s worth knowing about. God Bless You & Your Family, and our best to you all.February 28, 2007 at 6:24 pm #15299julesParticipant
chemo has a cumulative effect. Sometimes chemo can effect the bone marrow and blood counts which may limit eligability for clinical trials or other treatments. Other patients tolerate chemo very well. The platinum drugs (cisplatin, carboplatin and oxylplatin) tend to be the most harsh. My Dad did not tolerate chemo very well however other patients I have come across have not experienced anything severe. You should be able to gauge how your husband is doing on chemo soon into the treatment. I would advise keeping an eye on blood counts – iron (hb) and platelet levels.
In answer to your question we are located in the UK. We were able to find an experienced surgeon here (I presume you are in the US). My Dad commutes to Germany to recieve immunotherapy. There is further info on immunotherapy under ‘research’ on this site.February 28, 2007 at 5:58 pm #15298
Jules, thanks for the suggestions. Where is your Dad being treated at and who was his surgeon?
JeffG – I am so amazed by you – I tell my husband about you a lot and what you have gone though and are going through and the fact that you were diagnosed 8 years again is so inspiring. Thank you –
Mary – They did give my husband Ativan – (I think that’s what it is along with the Companzine) They say it’s a mild sedative plus helps with nausea in chemo patients. I know they gave him Zofran at the hospital before the began chemo. I will get some of that too. He seems to get nauseated in the early evenings. He did eat better yesterday and actually ate two small bowls of potato soup today for lunch. He just looks weak and tired and I have never in my life seen him look weak and tired before. Thanks for all your advice.
Have a question for everyone doing chemo – does your body learn to tolerate the chemo better after the first time or should I expect him to be like this every week? Monday seemed to be his worst day. Is that what I should expect every week? I didn’t know if your body kinda gets used to the chemo or not?
KrisFebruary 28, 2007 at 8:12 am #15297julesParticipant
I am very sorry to hear about your husband and I can appreciate your reservations regarding chemo. I just wondered whether you have considered less destructive treatments such as immunotherapy or gene therapy? My Dad is having immunotherapy and the only symptoms he experiences is mild flu like fever the evening of the treatment. although it is difficult to evaluate the success rates with immunotherapy (as cc is so rare) the same could be said for chemo..
We are also looking into gene therapy as a back-up, again this is a treatment with few reported side-effects.
I just thought you should know that there are other options out there – in addition I would keep on getting surgical opinions. My Dad had a resection despite artery involvement, it is risky and difficult surgery but some surgeons are more skilled and aggressive in their technique then others.
JulesFebruary 27, 2007 at 10:27 pm #15296jeffgMember
Kris, Sorry to hear about your husband. I’d just like to say I was DX 8 years ago as of March 16th this year. This CC as I’ve said many times before and the crappy chemo that goes with it reacts different on everyone. Tell your husband I’ve had 3 procedures , 2 surgeries, radaition, and on my 4th different chemo regimen. Had some rough days and weeks but many , many, good days. Stay as positive as possible ” you just never know”……
Jeff G.February 27, 2007 at 9:27 am #15295ukmemberMember
You said it all when you said that your husband wanted to try and it is his decision more than anyone else’s. I wish him all the best and hope that he will have a good result.
My thoughts are with you.
PatriciaFebruary 27, 2007 at 1:34 am #15294
It does come in pill form. It really did help my husband. Most of the nurses we spoke to said it was the best. It has come down in price too since we were getting it. My husband used compazine too but it was not nearly as effective. I agree with Dr. Saab. You have to hang in there. I read JeffG’s posts and Caroline Stouffers and some of the others and I’m amazed at what they put themselves through and yet they are still fighting and even keeping their sense of humor. They are all inspiring. You just have to be strong for your husband. You’ll cry until you think you’re cried out and then you’ll cry some more but you will get through it! Your husband is young and strong and he wants to fight! Thats what counts. If you can just get the nausea under control so he can eat and not get too weak. That is very important.I’d call tomorrow and get a prescription for Zofran!! God bless. MaryFebruary 26, 2007 at 11:00 pm #15293
I know doing nothing is an alternative but it isn’t to my husband. After we got the news of it spreading to the lymph system, that was the first thing I thought – that I didn’t want him doing chemo. I told him that too and his response was, “so, we aren’t even going to TRY??” He was shocked that I would suggest such a thing.
Even today as he is so weak and tired, I am sitting there staring at him and he says he knows I am thinking that he shouldn’t be doing this. He said “how do we know anything unless we try?? Then we will always wonder……”
I asked the chemo Dr. the day he suggested this trial what if we came in here and told him that we didnt’ want any treatment?? He said he would try to talk us out of it and that treatment is “totally reasonable” at this point. He said my husband is the perfect candidate for a tough treatment like this because he is young and strong.
I have to say, all day today I am just thinking that I don’t want him doing this chemo but I realize I am thinking short term here because this is his first round of it and it’s just so incredibly hard watching him go through this.
I know you can all understand that.
Mary, he is on Compazine for the nausea. Does Zofran come in pill form or is it just through the IV?
Thanks to all of you –
KrisFebruary 26, 2007 at 10:58 pm #15292
I think the Drs. and we all approach things differently depending on age. My husband has the same Dr. as Kris’ and he wants to hold off on chemo for my husband. He says he doesn’t WANT to affect his quality of life for what may be a few extra months. These Drs. are all about the same age as Kris’ husband and they relate to him more as far as wanting to be more aggressive and prolonging his life. They have young children too, etc. and feel that he is too young to just not do anything. I actually caution my husband about telling them he doesn’t want to do anything that might make him feel bad because they look at him as being “older” at 59 and maybe won’t try more aggressive treatment. He doesn’t want to die, he wants to live to see his grandchildren grow up and he is and has been willing to try anything they suggest up til now. I do believe there may come a time when he will say enough is enough. I don’t want him to be sick all the time and I think there are cases where the chemo really does much more harm than good! He has been very fortunate so far to not have to undergo much chemo. The radiation treatments were hard but not nearly as debilitating and seem to have been very successful. I just hope that he can live as well as your husband did right up to the end. I don’t want to go through the heartbreak of watching him suffer. I really can’t imagine that. Right now I am planning on him being around for a long time. We all have to hope and pray for that! MaryFebruary 26, 2007 at 8:03 pm #15291ukmemberMember
Today I spent all morning in a meeting with a cancer care nurse (a work matter) She works for an organisation that nurses cancer patients in their own home, both because they are specialist nurses and can help the patient but also to support the carers, both physically and emotionally. She told me that she sees many patients who regret having chemotherapy since it detracts from their quality of life with very little extension of life. I know that it a really difficult call but sometimes the cost is too high.
… the chemo Dr. and he said this chemo can prolong his life and possibly GIVE him quality of life if it keeps the cancer at bay. I told him he hasn’t been sick,etc…..he said that will be coming to an end soon.
Frankly I don’t think there is enough known about the way in which this disease develops for your doctor to be so sure. All I can say is that my husband had no pain or sickness. he had swelling in this feet, ascities and rigors and severe weight loss but no pain. He was conscious to the end, had friends and family visiting the day before he died. He refused chemo, in fact at the end he refused even to go to hospital to have his ascites drained.
Your husband has been put on a clinical trial. Your doctor has no idea how he will react to the drugs, it is after all a trial. I can’t say I know what I would do in your shoes but doing nothing is an alternative.February 26, 2007 at 7:55 pm #15290
Is your husband taking Zofran? That seems to be one of the best for nausea. If he becomes dehydrated they will send him to the 9th floor to be given it IV and hydrate him. You may want to ask about that on Fri. We went several times but it didn’t really help. My husband’s problems were from a liver abscess obstructing his bowel. Once that was drained he was better.
Your husband is very young to be going through all of this. We felt we were too but at least our kids are all grown and I’m grateful for that. I’m turning fifty on Thurs and when ever I get teased I just say that I’m grateful for another year. After what we’ve experienced and observed this past year every year is a blessing!
There are a lot of people on this site that were given a very grim prognosis and have beaten the odds. You just have to keep fighting because they are learning more about treating this everyday.My prayers are with you all of you. I hope your husband gets through this initial rough period and tolerates things better this week. Take care. MaryFebruary 26, 2007 at 3:24 pm #15289
Thank you Mary – I am trying to get him to eat but he is not interested. He had the chemo on Friday. Sat. and Sun. he was really, really, really tired……ate a little bit. He then got pretty nauseated all during the night last night. Not as bad this morning but couldn’t even eat a whole piece of toast. I have heard from one nurse that day 3 is the “bad” day and that is today but I have also heard that this can go on – (him feeling bad…) He gets chemo again on Fri. and I’m just worried he won’t be feeling good yet, then he has to start this all over again.
This is so hard seeing this young guy going through this. I want to say it’s just not fair, but we all know this isn’t fair!!!!!!!!!
Prayers to everyone,
KrisFebruary 26, 2007 at 12:01 am #15288
I can’t tell you how sorry I am to hear your news. I just keep hoping things will turn around for you and your husband and you will get some positive results. I don’t know anything about chemo other than what I read here. I truly hope that it works for your husband.It seems like a lot of people have good results at least as far as shrinkage.We are seeing Dr. Saab too and I feel confident in him. I’m sure he will do everything possible to help your husband.All I can say is don’t let them get you down with their statistics. They never expected my husband to do as well as he has, so they don’t always know. Everyone is different! Just try to stay positive and help your husband to keep up his strength and maintain his immune system. Diet is incredibly important! I practically forced mine to eat even when he really didn’t want to but he is grateful now because he realizes how important it was! Take care! My thoughts and prayers are with you. MaryFebruary 25, 2007 at 6:20 pm #15287
Thank you Sara – we all need it!
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