Terry Posted August 5, 2004 Share Posted August 5, 2004 Our oncologist referred my husband to Hospice yesterday and I am shocked. My husband has had 2 rounds of taxol/carboplatin. After the first round, my husband was hospitalized for dehydration and a low WBC count of 700. The oncologist decided to cut the dose in half for the second round. Again my husband was hospitalized for a very bad rash and a staph. infection (MRSA) which hospital patients with an impaired immune system are prone to get. Now the oncologist wants to turn us over to Hospice. He is not offering any other options. He won’t do another chemo. He won’t try any other drugs. He is afraid that another round of chemo, regardless of what the drug is, will kill my husband. This just doesn’t feel right to me. Isn’t it common to try another chemo regimen if someone has had a bad reaction? We were not expecting this at all. Terry Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 5, 2004 Share Posted August 5, 2004 Hi Terry, Very sorry to hear about your husband. Have you gotten a second opinion? If not I would encourage you do to so ASAP. Please look into a second and if necessary a third opinion for more options and treatments. My thoughts and prayers are with your husband and you. Rich Quote Link to comment Share on other sites More sharing options...
Fall54 Posted August 5, 2004 Share Posted August 5, 2004 Terry, I too would definantly get a 2nd and more if need be opinon. My prayers are with you both. God Bless, jane Quote Link to comment Share on other sites More sharing options...
Nushka Posted August 5, 2004 Share Posted August 5, 2004 I would get a 2nd opinion asap. It may be that your husband is not able to withstand the riggors of chemo..but I feel like you do that there must be other options. It sure won't hurt to ask. I wish you all the best of luck. Nina Quote Link to comment Share on other sites More sharing options...
Jana_W Posted August 5, 2004 Share Posted August 5, 2004 I would also be getting a second opinion if the onc. is not offerring any more treatment. Jana xx Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted August 5, 2004 Share Posted August 5, 2004 Absolutely get a second opinion. I feel there must be another option. It seems to me the onc is giving up too soon. Cat Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted August 5, 2004 Share Posted August 5, 2004 YES!! Get a second opinion. If he is not able to withstand the chemo at least you have done what you should. Get all the copies of tests, scans etc. and get an apointment quickly with another cancer facility in your area. God be with you, Cindy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted August 5, 2004 Share Posted August 5, 2004 Hospice already? I don't think so. I have to get to work, so I don't have time for the whole story, but my husband had a terrible reaction to taxotere, and was literally knocked flat 24/7 for almost 2 months, including having a fever for 3 weeks and having to be hospitalized for 4 days, and then recovered and got Gemzar/Navelbine, did much better except for fatigue and now Iressa. Read my post under General II called radiation results and learn how he is today - one year later. His diagnosis and cancer spread is VERY similar to your husbands. I'm not saying your doctor is absolutely wrong, but PLEASE GET A SECOND OPINION ASAP!! Praying for you and hubby, Peggy Quote Link to comment Share on other sites More sharing options...
JaneC Posted August 5, 2004 Share Posted August 5, 2004 Terry, I'm so glad you posted your question. I agree with the group: get a second opinion from a different cancer center or oncology group ASAP. Praying for you and your husband. Jane Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 5, 2004 Share Posted August 5, 2004 I really have nothing new to say. I just want to agree strongly that a second opinion is warranted. I also want to let you know that I am sending a ton of fortitude and hope to both your husband and you. love elaine Quote Link to comment Share on other sites More sharing options...
john Posted August 5, 2004 Share Posted August 5, 2004 I would get a 2nd opinion. Roswell cancer center in buffalo is NCI designated if you are in that part of NY. Of course there is Sloan and a few others in NYC or Yale if you are closer to there What is his performance status? Does he do 10-100% of what he used to do? I would think there are other chemos and/or clinical trials. Did he get neupogen or another drug to support his immune system. Sometimes I think even prophylactic antibiotics are given. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted August 5, 2004 Share Posted August 5, 2004 Terry, It sounds like the oncologist is washing his hands of your husband, between the bad reaction to the chemo and this staph infection,( MRSA could be VERY SERIOUS). Find another doctor for chemo and maybe procrit or neupogen, whatever he needs for his immune system, and fight like he-- to get your hubby through this MRSA. The chemo at this point is secondary. He needs all his immune system right now, and all the help the medical people can give him in terms of antibiotics and support. Once he's got the staph infection beat, then work out the chemo options with a doctor who wants to put some enthusiasm into it. I'm sorry, and I pray that things will improve rapidly. XOXOXOXOOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted August 5, 2004 Share Posted August 5, 2004 Terry,Absolutely get another opinion.That sounds fishy to me as well as negative at this time.Try another dr.Too many of us have had good results with 2nd and even3rd opinions. Quote Link to comment Share on other sites More sharing options...
SJAS Posted August 5, 2004 Share Posted August 5, 2004 Whoa - second opinion, third opinion required here. What about all the other options? What about Iressa? Take a look at the Bloch website below for a little encouragement. Find a doctor who go the extra distance for you. http://www.blochcancer.org/ Quote Link to comment Share on other sites More sharing options...
babesdaughter Posted August 5, 2004 Share Posted August 5, 2004 What does your husband want to do? Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted August 5, 2004 Share Posted August 5, 2004 Please don't wait. Find another doctor now before it is too late. Once a doctor washes his hands of a patient he is no longer any use to them under ANY circumstances. That old negative attitude can and does kill. Don't let your husband become a victim of indifference and bad attitude. Get him some real help now. Hospice is great in some cases but be sure that you have no other options before you sign on with them. There goal is only to make a person comfortable not to try to save them. You still have time to go somewhere else. Don't waste it. I am praying for both of you. Lillian Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted August 5, 2004 Share Posted August 5, 2004 Terry, Please get a second opinion. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 5, 2004 Share Posted August 5, 2004 I agree wholeheartedly with the others -- get a second opinon, fast. There are milder chemos than Taxotere/Carboplatin, such as Navelbine and Gemzar. Go for it! Don Quote Link to comment Share on other sites More sharing options...
Terry Posted August 6, 2004 Author Share Posted August 6, 2004 Thank you, thank you all. Were it not for this support group I don’t know what I would do. Here are answers to the misc. questions. What is his performance status? His ability to function has declined dramatically over the past 2 months. I would say it is at best 10%. It takes him 4 hours with my assistance to get up, washed, dressed and in his lazy-boy. We do it in stages. Eat bowl of cereal - rest for 45 minutes. Get up to brush teeth and wash - rest for 1 hour. Get dressed - rest for 1 hour. Go downstairs on fanny and move to chair, rest for remaining day, getting up only to go to bathroom. Going to bed is also a terrible ordeal. He has to take ativan before he can muster the courage to go up the stairs. By the way, I have taken steps to set up the downstairs so he doesn’t have to do stairs. I now have a hospital bed and commode in the living room. My husband comes home tomorrow from the hospital. He isn’t going to like the changes one bit. Did he get neupogen? I’m not sure. He was given a shot called neulasta to help build white blood cells. Is that the same thing? What about Iressa? The oncologist didn’t mention Iressa to us, so I finally asked him. He is not enthusiastic about Iressa, telling us how expensive it is and that it doesn’t help that many people. He agreed to give us a prescription “if that is what you really want”, but we have to wait three weeks or until John is recovered from the MRSA. What does your husband want to do? Sometimes he says he doesn’t want to give up. Other times he says he doesn’t want to suffer anymore and that he can’t live like this. He cries a lot. We have a 9 year old son and the two of them did everything together. I think it is important to note that John is now pain free. He is on no pain medication! When we started, he had horrible headaches and back pain. This indicates to me that the treatment has been effective so far. I asked the oncologist if he would do another set of scans. It would be nice to know how John has responded so far. The oncologist told us he couldn’t justify the expense of new scans unless there were new symptoms. We have decided for now to refuse hospice. I am both relieved and petrified. I am relieved that John is not giving up and petrified that we are on our own. Our insurance won’t cover home health aides so tomorrow I am responsible for the care of a very sick man. I know we should get a second opinion but right now my focus will be on getting through the week-end. You folks are my lifeline. Terry Quote Link to comment Share on other sites More sharing options...
ginnyde Posted August 6, 2004 Share Posted August 6, 2004 Terry, This is so sad. It sounds just like Earl was for about 3 months before he went on hospice. Hours to get from bed to recliner and torture to get back upstairs. Some nights he couldn't make it so he slept on the couch and me on the floor. I don't know why your oncologist is being so 'doom and gloom'. Is John being treated at a cancer center. Is there another onc. there that you can request to review John's films and chart? Do you have insurance? And if you do why does the doctor care that the tests are $$$ if the insurance company will pay for them. Yes, you MUST do what John wants. But if he wants to continue you have to be his advocate. Also, I would suggest asking family or friends to spend some time with you this weekend. I could not get Earl from bed to comode by myself. This is a very difficult time for all of you. How is your child handling it? Terry my best advise is take it one minute at a time. Do what you have to do. Make sure to get some Terry time, it is vital. PM me if you have any questions. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted August 6, 2004 Share Posted August 6, 2004 Terry, I am speechless. From your original post there was no indication that your husband was having these kind of problems. I don't know what to say or suggest. Listen to everything Ginny suggests to you. It sounds like your husband is a lot like Earl. Ginny is probably the best qualified here to help you get through this. You and your husband, and your 9-year-old are in my prayers, Terry. Please keep us posted. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
john Posted August 6, 2004 Share Posted August 6, 2004 Neulasta is just like neupogen. That is good he got something to boost his white cell count Hopefully his performance status gets better and is lower because of his infection vs the cancer. Maybe Iressa is possible to get. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted August 6, 2004 Share Posted August 6, 2004 I am so glad your husband is pain free and it does seem he is responding to treatment. MRSA can cause a lot of problems but they are from INFECTION not cancer. It (alone) should not be the cause of giving up on treatment for cancer. You and your husband should make the decision with a supportive health care team based on the side affects of the CHEMO and CANCER TREATMENT not the RARE FLUKES that occur. I am so sorry this happened to him and to your family. My youngest is eight and I have many of the same feelings your husband is probably having. Incidentally, Iressa has helped me. Please consider getting another opinion to separate the MRSA symptoms from the chemo symptoms. Quote Link to comment Share on other sites More sharing options...
JaneC Posted August 6, 2004 Share Posted August 6, 2004 Terry, Please let family/friends/church members help - accept their help if it's offered and ask them if they haven't offered. Most people really do want to help and it makes them feel good to be able to do something. I had a good friend who coordinated volunteers and meals for me and my family when I was so sick from chemo. You can't do all this on your own. One thing that needs to be a priority is finding a new onc - one that is more concerned about your husband than with dollars (it was hard to find a way to express how I feel about his concern about the cost of things and keep this message G-rated ). Also my guess is that your husband will get stronger when he gets home and is over the infection. Praying for you. Jane Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 6, 2004 Share Posted August 6, 2004 Terry I hope your husband is able to fight off the remains of the infection soon. It sounds like you have an HMO by the way your Doctor is talking. Pls do not let what he says stop you. YOu must can file an appeal. Call the HMO. Tell them that most ALL insurance companies pay for In-Home Nursing care. Contact your Senators and Reps--tell them you are going to do that. Contact the press. Do whatever you can do to get the care YOU and YOUR HUSBAND need and deserve--and pay for, by the way. Get the scans that you need to see what is going on so that treatment can be directed in an adequate way. HMO's depend on people being silent about their decisions. Don't wait. They have people working on the week-end so you can call them now. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
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