My name is Dana and my husband has been diagnosed with stage two liver cancer. He is having surgery tomorrow to remove the tumor, but the doctors told us his chance of survival is not great. They said he's have to have chemo and radiation, but what I'm wondering is, if they say the chances are remote for his survival, why put him through that torture? He wants to do what he can to fight this and I'm behind him all the way.
What I want to know, from people that have been there or can understand is what can I expect? What side effects will he experience most likely? Will he have pain? How will this effect our marriage?
His will to live, I'm not worried about, I'm having a baby in January and he wants to hold on for that. He wants to be a Daddy to his little girl, and I hope this treatments will work. I just don't want to be blind sided, please help me to get a feel of what might happen.
[This message has been edited by DANAS68 (edited 11-13-2002).]
My heart goes out to you and your husband. Not that there's ever a "good" time to be diagnosed with cancer, but it must be particularly hard for you since you're expecting a child.
As far as chemo/radiation goes...the reactions vary. Radiation usually causes less of a reaction, but that depends on where they need to radiate...if they can avoid the stomach and intestines, then there's usually no nausea. I had five weeks of radiation to the left groin area, and I had no side effects at all. Sometimes it can make you tired, but many people say they don't even notice that.
Chemo is a whole different story. The good news about chemo is that there are so many anti-nausea medications on the market now that with a good regime, you're much more likely to avoid nausea. And some chemos don't cause nausea, but can cause aches and pain. That can be handled with painkillers.
Also, a lot depends on the regimen...how often the treatment is given. Some treatments are constant, some are weekly, and some are once very few weeks.
The questions I would ask your husband's doctor are as follows:
What type of chemotherapy are you planning to use?
How is it given (how often, IV or pills, etc.)
What are the likely side effects and how will you treat those?
If he doesn't have treament, what's his prognosis? How will treatment possibly improve his prognosis (i.e., do you think you can get him another six months? A year? More?)
How many treatments will it take to tell if the chemo is working?
Dana, I noticed your message was posted on 11/13 and your husband was scheduled for surgery the next day. How is he doing? My husband has had 3 liver resections because of cancer, which was a spread from colon cancer. They didn't just remove the tumor, but part of the liver each time. He had chemo (no radiation) after the first 2 liver resections but has not had any treatments for more than 2 years. He looks great, just the picture of health and his oncologist and surgeons are just amazed at how well he has done. His colon cancer was discovered 10 years ago so this has been going on for a long time. He did have the cancer spread to his left lung and had the upper lobe of his left lung removed in April, 2001. We are thankful for each good report as we are well aware that the next one might not be so good. God bless you.
Thank you for replying to the message. I spoke to My husband's doctors yesterday and asked them some similar questions. His chemotherapy is given in what I consider and abnormally large does. They call it systemic chemo. It contains a cocktail of chemicals with long medical terms that I can't spell or pronouce. It is administed for one week once a month via IV and for every other week in the month once a week through injection. The doctors said that this course of treatment will be continued in combination with radiation for three months.
After the three months, they will try and remove more of the tumor. It was too large to get all of it with the last resection. Then they'll do the same regimen again for three more months.
He said the side effects could be anything from extreme fatiuge and weakness, to nausea, vomiting, and aches and pains. My husband has them all, and for extra fun, the external radiation they're doing caused a quite unsightly skin irritation that is quite painful to the touch.
The doctor says with luck he'll be able to survive for five years or more if the treatment works. If it doesn't work or if we discontinue it, he'll die within a year. He doesn't want to stop the treatment, but I see him suffering and there's nothing I can do.
The antinausea pills make him feel achy and the painkillers make him feel drowsy, so he doesn't like to take them. I don't blame him, but I feel like saying, the doctors are trying to help and you won't let them.
I brought my husband home last night. He was asleep most of the time, and when he wasn't he was grouchy and short tempered. I could tell he was in pain and feeling lousy, but he won't level with me about it. He says that with Jakey and the baby coming I don't need the hear his moans and groans. This cancer is all ready affecting the balance in our marriage. I just hope that when it's all over, we have something to show for it.
Thank you for your concern and input. It feels good to know there's someone else out there that knows what going on.
I look forward to hearing from you again soon.
Last edited by Administrator; 04-04-2012 at 12:12 PM.
Hi Dana -
Well, it sounds like you are both certainly going through hell. Unfortunately, cancer treatment can be like that, but if they can get your husband another 5 years, then it's definitely worth it. And who knows...by that time they may have a cure!
At any rate, let me address some of the things you mentioned in your two posts today. First of all, ALL chemo is systemic...it goes through your blood stream to all parts of your body. Ask your doctors to write down the names of the chemo medications for you. Also, ask them to write down the names of the anti-nausea medications and painkillers as well.
I've never heard of anti-nausea medications causing pain, but I'm no doctor. Are you sure it isn't one of the chemo meds that's causing the pain? Some of them do (Taxol is especially noted for causing pain).
As far as your husband "sucking it up", please tell him for me that it is not necessarily a good way to deal with cancer. It's far easier on your body in general, and far healthier to your immune system, if you can get enough rest and eat some of the right foods. If food is a problem, try Ensure or one of the other liquid nutritions that are available. Also, even though painkillers might make him groggy and sleepy, he probably needs the rest.
I'd also highly recommend a support group, if he's able to attend (and you may want to attend one for caregivers.) To find one, ask your oncologist, call all the local hospitals, and/or see if there's a "The Wellness Community" located near you...it's an organization that does nothing but support for cancer patients and their families.
Believe it or not, if your doctors are telling you he may get another five years with the treatment, that's pretty good. My mom (who passed away several years ago) had been diagnosed with third stage breast cancer. No one thought she'd live more than a year, but she lived 8 1/2 years, and they were all good years until the last 3 months of her life. She was on and off chemo almost constantly, but only missed two weeks of work(when she had surgery after first being diagnosed). If the will to live is there, that can be the most powerful medicine, and it sounds like your husband has a very strong will to live.
I'll keep an eye out for your posts, and meanwhile I'll keep you both in my prayers.
My husband's doctor told me that he is being treated with a cocktail of medications known as antimetabolites, the main drug being methotrexate and 5-fluorouracil. There are others, but these are the main two.
For the nausea he is taking Atavan and for the pain Tylenol 3. I'm not sure if the Atavan is causing additional pain, but something is causing him to have flulike syptoms, including a high fever. He's back in the hospital in ICU. His temperature was over 103 and he had the yellowish tinge to his skin and trouble breathing. I'll keep you updated on his condition. I just wanted to answer you question about the drugs.
Dana - Methotrexate and 5FU (fluorocil) are fairly common and often given in tandem; they can cause nausea, but it's not usually that bad, although it probably depends on the dosages. My Mom was treated with those for a couple of years for breast cancer and had little nausea. It's quite possible that the combo of radiation and chemo is making him sicker than either one by itself would.
Atavan is an anti-anxiety medication, and I have never before heard of its being used for nausea. A good treatment to prevent nausea is IV Zofran right BEFORE the chemo is given, along with the pill form of Zofran (sorry, I forget the pill's name) for a few days after the chemo. Suppository compezine can also be given, and is especially good if the nausea prevents taking pills. But whatever he takes AFTER the chemo, he should be given anti-nausea medication by IV right BEFORE the chemo. Also, if the Tylenol 3 isn't working for pain, you might ask them to try Vicodin.
It sounds like your husband's having a really tough time, and I'm so sorry to hear that. At this point, it's hard to tell if it's from the treatment or from the cancer; however, don't be afraid to ask a million questions and to get a second opinion!
Also, think about taking a tape recorder to all doctor sessions...tell them you just can't remember everything and would like to tape the conversation so that you can go over it later. Most doctors won't object. It helps when you think of questions later.
Keep me posted. I truly mean it...you both will be in my prayers.
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[This message has been edited by moderator2 (edited 11-30-2002).]
You last post prompted the question, Why atavan? I didn't know it didn't treat nausea, I just assumed the idiot doctors knew what they were doing, and apparently they don't. This twelve year old onco resident thought that Walter was having psychosematic side effects from the chemo since they set in so quickly, so he prescribed this unnecessary drug and let my husband suffer needlessly. When I talked to his regular doctor, he said sometimes he writes for antianxiety drug for patients having nightmares or panic attacks about or before treatments. He is going to change his pill, although Walter will rarely take it. I suggested the IV Zofran,but he said to hold off on IV meds until we see if having a proper antinausea pill will do the trick. He did switch him to Vicodin though, because he saw that the Tylenol 3 wasn't makeing a dent in his pain.
Thanks again for this. He's still in the hospital, but out of ICU. I'm trying to get him to come on this board and talk to others in his situation. No luck on that. Thank you for your prayers, every little bit helps.
Last edited by Administrator; 04-04-2012 at 12:11 PM.
YELL at that idiot doctor to give him IV anti-nausea meds immediately BEFORE giving him chemo. Many people experience nausea immediately when receiving chemo, and if they're already nauseous, they can't keep a pill down! You must be your husband's watchdog. Since you've mentioned that his attitude is pretty good (he's willing to try anything to stay alive), I seriously doubt his symptoms are psychosomatic. Honestly, where is this doctor's head? Nausea is an extremely common side effect, it's also variable from person to person as to how bad it is (and from chemo to chemo), and it should be treated preventatively. If they give him the IV anti-nausea meds, THEN he can take the pills afterwards (probably one a day for about 2-3 days after chemo) and keep them down.
I wish everyone could have my oncologist. His philosophy is that no one should have to suffer through nausea with chemo, even if he has to find them a supplier for mj! I met at least 20 of his patients during my four months on chemo, and not one of them had severe nausea. Some of them did experience some queasiness, but that was it. And they were all on different chemo regimens, depending on the type of cancer they had.
Two of the women in my cancer support group were being treated at major Boston hospitals...one at Dana Farber and one at Mass. General, and neither was being effectively treated for nausea until I told them what my doctor was giving me. They had both lost a lot of weight due to nausea/vomiting and loss of appetite. Once they learned what I was getting, they insisted on the same regimen for themselves, and experienced great improvement.
I will call my doctor on Monday and get the name of the pills I took. The IV was Zofran, but there's another one, too and I'll ask the name of that. Also, Compezine suppositories are good if he can't keep a pill down, but they don't always work if the nausea's really bad.
Wish there were more I could do to help. Consider yourself hugged.
My husband is back in the hospital again. This time it is because his skin where he's getting the radiation is all cracked and was actually opened and bleeding. Don't these doctors know what they are doing. I can stand to watch him suffer like this and to think we have so much more ahead of us. I just want to help him, but I feel so useless there's nothing I can do, and even if there was, I didn't know about the problems until it was too late. Why does he keep things from me? Why is he afraid of me? Why is he shutting me out? Doesn't he realize I love him and I need to care for him? I need to do something to try and help him. Why won't he let?
I can't stop crying at night. If he's home I have to hide in the basement so he doesn't hear me. When he's in the hospital, I don't sleep. I vacuum. Does anyone out there understand?
[This message has been edited by DANAS68 (edited 11-25-2002).]
Once again, Ruth, Walter and I both appreciate your prayers and understanding. I have looked into a few groups and the first meeting of the hospital one is tomorrow. I'll see what I can do about getting there. He's being treated at Bayonne Hospital and the place is a pit and the residents are like idiots. They don't know what they are doing. We don't have much money or insurance so we can go to certain places i.e. Sloan-Kettering in New York.
We finally saw the actual full fledged oncologist today who was appaled at my husband's side effects. He said however we have to continue the treatment although he is going to lower the intestity of the radiation until the skin heals. My husband has some scarring and raw patched all ready from a Vietnam wound, maybe that's why it's like that?
The cancer has been found in his stomach now too and part of his esophagus. I don't think we are going to beat this now. It spread even on the chemo and radition. I'm concerned about his legs being so swollen and his neck having so much pain. I'll raise these issues at the meeting. I'll let you know how it went.
I just wanted to update everyone on my husband's condition. He is once again at home and is doing relatively well considering. I just wanted to thank you all for your support. We are going to have a long road ahead, but with help from the wonderful people at this sight, we will get through it.
I'll continue to keep all of you updated. Thank you for your help and your prayers.
Last edited by Administrator; 04-04-2012 at 12:11 PM.
Hi Dana -
I'm so glad to hear that Walter was able to go home. Please don't hesitate to bug the oncologist for info...and don't let him put you off if you have questions.
If you ever feel you're not getting good care, you can always call one of the top cancer centers and ask to be put in touch with someone who can give you a second opinion. Sometimes that gives you the knowledge you need to ask the right questions of your own oncologist.
Please keep us posted as to Walter's progress, and also feel free to "vent" if needed here on the board. Meanwhile, I'll keep you both in my prayers.
[This message has been edited by moderator2 (edited 12-10-2002).]
My wife is the usual poster to the board, but she asked me to post and tell everyone that our daughter was born last night. She is beautiful, perfect, weighs 5 lbs. 3 oz. and is being called Karen Melissa.
Thanks to everyone who has supported Dana the last few months. It has been a help to us both.
Hi Walter -
How wonderful to hear from you, and with such good news! Congratulations, Dad. I'm so very happy for you and Dana. Please give her my regards and pass on the congratulations to her as well.
And I hope that you continue to do well on the treatment. My invitation to Dana holds for you as well...please feel free to post for any reason...if you need advice, help searching the net for info, or just want to vent. We are all rooting for you, especially those of us who've been through it.