CancerCompass message board discussion started by Steven E. on 5/26/2003 http://www.cancercompass.com/message-board/message/all,345,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, My name is Mary and my husband was diagnosed with Multiple Myeloma last October. He has been in the hospital for a week now and he had a stem cell transplant. I don't like what I am seeing. He is not the same person he was. He is forgetful and he has called the last 2 days and told me not to come in. We have been married for 30 years and I am really scared. Can anyone help? Steven E. Mon, 26 May 2003 00:00:00 GMT Sorry if I can't be much help, but I will try. I'm an ovarian cancer survivor and know that depression is definitely a side effect of the treatment/diagnosis of any cancer. I was drawn to your message because my father had multiple myeloma. He was treated with oral chemotherapy (don't even know what) and went into remission for seven years. He has since passed on, but I was impressed with the treatment results after hearing his original prognosis. Stem cell transplant is being used more since then and I don't know what side effects you should expect, but from experience, your husband probably needs some medication for depression. I am all too familiar with wanting to be alone, not wanting to talk to anyone, staying away from social functions--just feeling different and helpless. He really needs you now, but tread lightly. He'll soon realize he needs the support of others. There are several books that I've found worth reading--is he a reader? Have you gotten a second or third opinion on treatment options? Doris M. Mon, 02 Jun 2003 00:00:00 GMT Hi Mary, I am not much of a writer, but I am going try. I have had MM since Sept. 1997, but didn't start treatment until 1999 with check ups ones a month for a year and half. If at all possible please contact The American Cancer Society (ACS) at http://www.cancer.org/ and also The Multiple Myeloma Research Foundation at http://www.multiplemyeloma.org/. You see I was 58 years old when I got the word about MM and didn't like it, but then my wife sat down talked about with my boys and then with the two Societies' above. Oh yes also this site, MyCancerCompass, at http://www.mycancercompass.com. I hope this helps, good luck. Bill William J. C. Mon, 02 Jun 2003 00:00:00 GMT Hi, my name is Mike and my wife has Glioblastoma multiforme (Brain Tumor). I had to do a lot of understanding of what she had and have a lot of hope so we can make it through this together. We have been married for 34 years and I will not let this stop my hope and believe that we can make it. It is very hard to keep looking at the good side when others tell you can't beat this, but you must not let your belief in God and you doctor get away. We have days when it is very hard to know what we have to face but look at the good that has happen in your life so you think of that not the bad things. You have to be the strong one for now and not let him think you will not be there at all times for him, he will get depressed a lot and needs some one that will say no I'm here always for you. I do think the cancer meetings at most hospitals are very good to attend and we go every month and meeting people like us with cancer so we know how many have been told they will die and have been here for 5 or 6 years and still doing fine. I will take your letter to our next meeting on the 18th and you will probably hear from a lot of them so you need to know there are a lot of people out here just like you that do care for you and your husband. I believe the mind has a great part in making it and times will be hard but plane when we get through this what we will do then not look at what if. I have most wonderful wife in the world and will not let her go now so we need each other more now then we did before. We are making plans for when she gets done with her radiation so we can make a short trip some place and spend some time doing some thing together. We do not forget that she has a brain tumor or that it is bad but we know a lot has been good so far too. I have to do a lot of reading on cancer to find out what is going on and the hope that there can be people make it that is how I found you letter out here and so get out and take with people and keep him updated so he knows that a lot of prayers are there for you two. We have a lot of people praying for use and I will see to it they put you in there too. I do want you to know others have are out there and do care to but can not feel what you do when this happens to you so do give up just believe that (God) Doctor and you and him can do it. Mike & Rosie Rosemarie B. Tue, 03 Jun 2003 00:00:00 GMT Good Morning Mike and Rosie, Thank you so much for answering my e-mail. Steve is doing better I can't wait for him to come home. We had a few rough days after the stem cell transplant, but it looks like his levels are coming back. I just love him so much he is my rock. I am hoping he will be home by the end of the week. I am getting the place ready for him. I pray to God every day for his return to me, I know he will have the cancer forever until they find a cure but if this transplant will give me a couple of years more with him, I'll take it. We were married 30 years in April. Our youngest daughter graduates from High School on June 7. She is our light. I am hoping that at least he will be home to see her in her cap and gown, He will not be able to go to the graduation, But if he is not I will be taking her to the hospital on Friday in her cap and gown. I'm sorry for babbling on. Thank you so much for adding us to your prayer list. At our church we have a prayer chain and I will be adding your names to it if that's all right with you. I feel that THE POWER OF PRAYER does work. You'll be in my prayers every day God Bless, Mary E. Steven E. Tue, 03 Jun 2003 00:00:00 GMT Dear Mary; Don't know how much help I'll be personally but I think I will be of some assistance. I was diagnosed in Late Dec. 2002 with Malignant Melanoma that had metastasized to the lymph nodes and brain. I'm what they consider in stage 4, which is the very end. I'm only 38 and have a wonderful 33yr. old wife and a beautiful adopted 10 yr. old son and have no plans of going anywhere yet. It would be lie if I didn't tell you there are days that I don't know if I'll make or want to go through some new pain or test. I just keep a lot of faith in God, Prayers, friends and of course family. I will send you a few web-site pages that have been very very helpful to me and getting me through this so far. My favorite is www.mpip.org. There is a schedule for chat rooms everyday that you can get involved in and the message board where you can leave questions and people respond. It's daily for me and I've met many patients and caregivers such as you or my wife. My wife e-mail is shilo009@aol.com, If you have any questions or need to chat. Have a great day and God Bless. Feel free to write to my e-mail address and let me know how the husband is doing. Hope to speak to you John F. Tue, 03 Jun 2003 00:00:00 GMT Hello Mary & Steven, Just wanted to let you know that I know what you are going thru. My husband August & I just celebrated our 40th wedding Anniversary on May 25th. He was diagnosed with Small cell lung cancer 2 days after he retired at age of 62 in December of 2000. We never thought we would see our 40th. He had Chemo & Radiation. His tumor did not shrink or grow. The Dr's gave him 3 to 4 months when he was diagnosed. Here it is over 2 years later. We finally took a short trip last week for the first time. He was also very depressed at the beginning and still goes thru some bad days. He just had another scan and are waiting to see the Dr. for the results. This site is the best thing I ever found. There are so many wonderful people out there that care for others. Please keep replying to these messages. I look forward to all of the emails that I read daily over and over. God bless you all and I wish you all well. Please keep us updated. Sincerely, Anna August Z. Wed, 04 Jun 2003 00:00:00 GMT Good morning to you and yours. I'm very glad to hear you in a better mood today it is hard to stay that way when we get bad news but just look at the good side. We have each other and that is what keeps us going every day. My wife had her surgery April 4 then last week I had to have two toes on my left foot took off. I had an accident about three years ago and they just got worse so we had to do it now she helps me get back to walking but it could have been the whole leg so it is good. I get to spend a lot of time on our computer now; she sleeps in the morning but gets up at 1 or 2 AM for a time then comes to bed at 5 so we work it out. She has radiation at 11:30 every day not far from the house so it doesn't take long to get there. I can drive now so that is good we can't walk far but do lunch each day and just spend a little time out together. The three-month MRI will tell how fast it will be back but we have a lot of hope for now and our doctor is good and is looking at a lot of new things out there for us. Well just wanted to say hi and keep up the hope and you will be in our prayers to. Mike & Rosie Rosemarie B. Wed, 04 Jun 2003 00:00:00 GMT Hi Mary, I just signed onto this site looking for information and saw your message. I am 51 and was diagnosed with Multiple Myeloma in Oct 2001 and because mine is a resistant Myeloma I was given only 6 months without the stem cell transplant. After 12 months of 96 hours of continuous chemo which none worked I was unable to have the transplant. The treatments almost killed me twice. I also have Multiple Sclerosis, which didn't help. As a last resort my doctor tried Thalomid (thalidomide), which had almost an immediate effect. Most patients on Thalomid are taking 300-400 mgs per day but due to my Multiple Sclerosis I requested a lower dose (I am an RN also). My doctor agreed to let me try the lower dose (50mg every other day) and it has worked for the past 8 months. However my counts started to rise again and we increased my dose to 50mg every day. I have gone back to work but not as a floor nurse and just part time out of choice, I detest not working. I have a 21-year-old son and when I was given 6 months I almost lost it. I was preparing for the end. I gave many things away, sold my car and wanted to make sure no one had much to take care of. Do I regret some of the things I did? The things I gave away.no problem but the papers I shredded I could kick my self in the behind. I shredded many things that pertained to my job and when I go to look for them they are gone. I hope this can give you some comfort to know that even if the current treatment doesn't work out Thalomid really works. However it is costly. My monthly cost for the Thalomid is $450.00 and if you don't get your medicine paid for by your insurance can be difficult. But the manufacturer has a plan that can help. Best to you and yours, Darlene Darlene H. Thu, 12 Jun 2003 00:00:00 GMT Mary, Cancer, and all illnesses can be very depressing and life altering. I have gone through two battles with thyroid cancer in the last year. Each time, because of the treatment and preparing for the treatment, I changed as a person. I became depressed, cranky, and somewhat impatient with people. The key was that I kept looking for the light at the end of the tunnel. Sometimes I would loose that light and friends, family (spiritual and physical) would remind me to keep going. Most of all they didn't put up with my failing. While they didn't berate me about it they also insisted that I not let it rule me. So, my advice is love your husband. Even when he does not want to be loved. Reach out to him. Show up at the hospital each day. Bring him thing that he would enjoy -- food, flowers, videos. Find things to do that are fun and enjoyable. Read a humorous book together. Read from whatever religious texts are the foundation of your faith together. Most of all don't let him slide into and become comfortable with his anger and depression. In a loving way coax him out of it and resist his tendency to fall into self-defeat. Know most of all that there are powers out there greater than we can ever imagine and our faith in those powers can be greater than our weaknesses as humans. God Bless, Marlin Marlin B. Sat, 05 Jul 2003 00:00:00 GMT I have had MM for nearly 4 years now, I chose not to have the stem cell transplant. I read up on it considerably before my decision. I have mixed alternative measures with conventional ones with close monitoring. I have not gotten any better but my decline has been slower than many others. In regard to your husband's mental response, some of it is most likely protective for you; he doesn't want you to see him in pain or looking so bad. He should change his posture about 4 weeks into treatment, hopefully. I had a friend who succumbed to MM after 2 1/2 yrs. who didn't want to talk to me about his bout or return calls. Don't give up, don't let his response affect your love or care for him. If you do not have him on any prayer group, get him on a list. I believe this has helped me more than any other thing. I have people praying for me and my wife all over the world and I know it has sustained us in our battle. You are already in one prayer group I know. Bill L. Sun, 13 Jul 2003 00:00:00 GMT Heya, don't worry he most probably doesn't want you there because he doesn't want you to see the state he mite be in? I am not being nasty or anything but if your really concern on wondering if you actually think he doesn't want to see you again then why don't you just make a secret visit and just speak to him, but to be honest I don't think it is anything to do with him braking up with you or him not wanting him to see you, it is the fact that he doesn't want you to get any more upset about what has happened then you are now!! And he doesn't wanna see the state he is in!!!! Okay so quit worrying and get it sorted lovey lol Megan Thu, 28 Apr 2005 00:00:00 GMT  On 6/3/2003 Rosemarie B. wrote:Hi, my name is Mike and my wife has Glioblastoma multiforme (Brain Tumor). I had to do a lot of understanding of what she had and have a lot of hope so we can make it through this together. We have been married for 34 years and I will not let this stop my hope and believe that we can make it. It is very hard to keep looking at the good side when others tell you can't beat this, but you must not let your belief in God and you doctor get away. We have days when it is very hard to know what we have to face but look at the good that has happen in your life so you think of that not the bad things. You have to be the strong one for now and not let him think you will not be there at all times for him, he will get depressed a lot and needs some one that will say no I’m here always for you. I do think the cancer meetings at most hospitals are very good to attend and we go every month and meeting people like us with cancer so we know how many have been told they will die and have been here for 5 or 6 years and still doing fine. I will take your letter to our next meeting on the 18th and you will probably hear from a lot of them so you need to know there are a lot of people out here just like you that do care for you and your husband. I believe the mind has a great part in making it and times will be hard but plane when we get through this what we will do then not look at what if. I have most wonderful wife in the world and will not let her go now so we need each other more now then we did before. We are making plans for when she gets done with her radiation so we can make a short trip some place and spend some time doing some thing together. We do not forget that she has a brain tumor or that it is bad but we know a lot has been good so far too. I have to do a lot of reading on cancer to find out what is going on and the hope that there can be people make it that is how I found you letter out here and so get out and take with people and keep him updated so he knows that a lot of prayers are there for you two. We have a lot of people praying for use and I will see to it they put you in there too. I do want you to know others have are out there and do care to but can not feel what you do when this happens to you so do give up just believe that (God) Doctor and you and him can do it. Mike & Rosie Hi I will start by saying that i am very proud of you for hanging in there i know what you are going through as my partner of eighteen years has the same  the highest form grade 4 and diognosed terminal like you i am strong but sometimes i do break down  but never in front of here ect it is very hard to see the one you love fade a bit more  every now and again i don't know about you but it's all the little things i miss.  Everywhere i look i can see here doing the things she used to do ect ect but all the time now she is in bed and i care for her now fulltime as i have done for the last 9 months because we love them so much we will do anything for them.  People around me keep saying that you should get more help but as i feel that only i can do the things she needs.. I do have ashley care twice a day but by the time they arrive i have done everything anyway as that is how i do things coz i love my lesley so much i am there for her no matter what, and i do look at her when she is sleeping and still talk to her as she sleeps aswell  as i know she here's me coz of the smile she gives me somtimes ...I just hope that i can go on being strong for her...                Regards....Terry    Shadowretriver Sat, 06 Jan 2007 00:00:00 GMT