CancerCompass message board discussion started by Dianne_w on 5/3/2006 http://www.cancercompass.com/message-board/message/all,5250,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband is 37 and diagnosed with Stage IV rectal cancer six months ago. He's had chemo-radiation, a colon resection and is now about a month into a six month FOLFOX chemo regimen. After only two treatments, he's had to stop treatments for now two weeks due to low white blood cell count. We have two young children (6, 4) and life is an emotional roller coaster. My husband maintains a positive attitude and thinks that nothing is going to happen to him but I am scared of living without him. I feel so isolated during his treatment weeks when he is sick and tired and I am looking for someone to talk to who understands my situation. Please help if help is out there. Dianne Dianne_w Wed, 03 May 2006 00:00:00 GMT Dianne, I read your message and felt compelled to respond. I am 44 yrs. old and diagnosed with Stage IV with metastasis to the liver. Been on Folfiri chemo regimen since February and have to wait until my next CAT in June to determine a course of treatment ( ie surgery or more chemo). It is a difficult time, my children are older and more aware of the situation ( 16 and 13 ). Try not to pay attention to the stats on the internet - they are representative of a wide demographic, many of whom can't handle surgery or chemo and succumb to the disease. Your husband is still young and able to fight. Keep in mind he has probably been thinking of the worst as well. Try and assure him that there are survivors outside the five year norm who have gone on to lead productive lives. There are support groups out there. I live just outside Toronto ,Ontario, Canada and there are many groups. Contact your local Cancer Centre and try to find a group in your area. You can go by yourself or with your husband and get a better handle on what others have experienced. I would give you my e-mail but Cancer Compass monitors and vets personal e-mails. You could try --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- and see if they catch that one. Anyway, best of luck to you and your husband. I will monitor the site for any updates.Ian C Ian c Tue, 16 May 2006 00:00:00 GMT Hi Dianne, My name is Lisa and I'm a stage 3 rectal cancer survivor just over 4 years now ~ diagnosed at age 40. Please check out the American Cancer Society " Cancer Survivors Network " Link Below. You'll find a great deal of love & support that will be good for both you and your husband. I understand this is a very difficult time for you and I would like to help if I can. Please feel free to write me. Lisa http://www.acscsn.org/index.html?popup=1 Brown Eyed Girl Thu, 15 Jun 2006 00:00:00 GMT Ian, Just writing to you to find out how you are doing and to see if you had your CT scan yet and had received any results? Is there a determination about whether the next step is more surgery or more chemo for you? Things with my husband and his treatments have gotten a bit challenging. Since he's had one month delays between the last two rounds, they gave him Neulasta (white cell booster) which gave him major side effects this past week end. Unbearable bone pain and headache. He also got terrible nausea with this last round and that has never happened. Last week was a very difficult week. He's feeling much better now only in time to start the next round on Tuesday (if the Neulasta worked) and he's actually dreading going back. He told me he wanted to stop treatments because this last time made him so sick. I hope I can support him through the next round. Hope you are doing well. Dianne Dianne_w Thu, 15 Jun 2006 00:00:00 GMT Thanks for your response Lisa. My husband is Stage 3, borderline Stage 4. The radiation and chemo he had prior to his surgery had killed the cancer that had spread to his abdomen and pelvis that they found during surgery. That's why they are saying he's a Stage IIIC, but possible Stage 4 since the cancer they found was not active in the pelvis when it was discovered. He's completed 4 treatment out of a total of 12. He's had a tough time. The last two rounds have been spaced out by a month instead of 2 weeks so they gave him Neulasta to boost his white cell count. He was not well this past round (first time he had bad side effects) and we think it was from the Neulasta shot. He had unbearable bone pain, nausea, headache and his usual, diarrhea. He was so sick, in fact, he says he can't go back for more, he's done. This coming from a person who's never complained about anything he's had to go through to date. He has high anxiety about going back for the next round and now he's not sure if his body will even be able to take 12 treatments. We have two little kids who are having a hard time being put right in the middle of this. Your story is inspiring to me. I would like to hear more about what you went through and how you made it through. Thanks for sharing. Dianne Dianne_w Thu, 15 Jun 2006 00:00:00 GMT Dianne, Did you check out Cancer Survivors Network at http://www.acscsn.org/index.html?popup=1. If you have that's great if not please do. Lot's of great stories from people you are beating this disease everyday. Is your husband taking anything for his anxiety ? If not he should talk to his Dr about how he's feeling. Also he may want to talk to a therapist this is something I did first by myself and then the therapist had my husband join in. Dianne once you join the cancer survivors network you'll have your own personal mailbox where I'll send you my e-mail address. Lisa Brown Eyed Girl Tue, 20 Jun 2006 00:00:00 GMT My wife age 48 was diagnoised with rectal cancer in the fall of 2003. She had radiation and continous chemo 5fu and then went to Boston to have the tumor removed. Then she did chemo again and finished in the fall of 2004. We thought things were going good until this year, she was very tired and had a dry cough her doctor treated her for pneomia (sp). One Sunday in April 2006 she told me I had to take her to the hospital as she has a terrible heach-ache they did a cat-scan and found three tumors in her brian. At cancer care they did a pet scan and biopsy of her lungs and found the cancer had spread to her brain, lung, back in the rectum, chest, lymph nodes, bones, spine and just about everywhere except the liver. She went thru 12 radiation treatments to shrink the tumors in her brain. She just started the flofox treatment when we went back for the second they put her in the icu unit has she a a fever and white blood count of 1. She is having a rough time, can't work she can sit up and eat and go to the bathroom but thats about all. I am thankful that our kids are grown (although our 20 yoa son is in Iraq. It is hard watching your wife die. The treatments are not leaving much quality of life for her. Tompotato Wed, 21 Jun 2006 00:00:00 GMT Unfortunately I took a turn a few weeks ago with some internal bleeding. Needed 8 pints for a transfusion. Got my CAT scan early as a result of being admitted and unfortunately - the first stage treatment did not work. I am switching to Folfox with Avastin to see what happens. The spots on the liver have continued to grow so that has caused some concern. We'll just have to take one day at a time. Still looking forward to my time at the cottage up north and have told the doctors I won't be around for one of the treatments. Too bad so sad - I have better things to do while I still can. Hope hubby is feeling better. Ian C Ian c Sun, 25 Jun 2006 00:00:00 GMT Dear Dianne W. Am sorry to learn of your husband's diagnosis. For 3 years I was misdiagnosed, "hemorrhoids" the Kaiser (Santa Clara, CA) primary care physician and a colonoscopy misdiagnosed me too. After pursuing the traditional chemo, radiation, surgery (have a permanent ostomy) and oral chemo, and am now dealing with cancerous ingunal/groin lymph nodes, I decided to take the alternative approach which does offer me a better outcome than chemo. If I had found the above referenced book early on, I have no doubt that I would be well on my way to reducing the size of the nodes or getting rid of the cancer in the lymph nodes completely. I do use many different modalities, like prayer, Yoga, Qigong, light dance. the alternative medicine website <--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----> Encourage your husband to be the pilot of his health. best to you and yours, M. J. Arigato Sun, 02 Jul 2006 00:00:00 GMT Hi Dianne, My husband also has Stage IV rectal cancer with liver mets. He went through 6 weeks of chemo/radiation treatments followed by surgery which discovered the liver mets. He then went through 6 months of Folfox/Avastain, followed by a liver re-section. During the liver re-section another tiny spot was discovered in the upper right lobe (the previous spot was in the left lateral lobe) -- this was found due to the surgeon doing an intra ultra-sound while my husband was opened up. Once my husband has his colostomy reversed, he is to undergo 4 more months of chemo -- this time it will be Folfiri with Erbitux(sp?), but the Erbitux will be given every week. Because my husband's liver mets were never picked up on any scans (not even the PET scans), the doctor really isn't sure what to make of this case. He is still putting my husband in the 20% category of those who will survive, and considers my husband a "lucky stage IV" due to the fact that when a second spot is found there are usually numerous other spots in the liver -- but that isn't the case with my husband. So the doctor feels that my husband is being given a second chance at surviving. We have 5 children (14, 11, 10 & 3 yr old twins), so I definitely feel your pain. In our house I am the one who is trying to keep my husband positive -- the attitude plays such in important part of the overall battle. I wish there was a way I could get you my e-mail or phone number. Please feel free to vent anytime you need to -- I understand the isolation feeling all too well. Just knwo that you are not alone -- even if it's only through this message board, there are people who understand what you are going through. God Bless, Lori Lorid Thu, 20 Jul 2006 00:00:00 GMT Hi Lori, Thanks for writing and yes, I too wish there was a way we could contact each other directly because we could definitely help each other. How old are you/your husband? When was his surgery? And wow, five kids! How are you managing everything? It must be a lot to bear. We're from the Boston area, I have 2 kids and I work full time. I am tired and I feel very lonely, especially during treatment weeks (which is right now). The isoloating feeling is overwhelming at times. I find that my/our friends and even family members have no comprehension of what we're going through. I guess I would not either, unless you live it you really don't know the total family/life impact that it has. In any event, there are chat rooms over on the ACS web site. If you follow Lisa's string (in response to one of my other postings) and can find the chat room, you name date and time, I will meet you in the chat room and we can exchange emails there. I have been looking for someone to talk to and I bet you are too. Let me know if that works. I will be notified via email when you respond so please do. I check my email all day long so I will respond back to confirm I received your posting. Let me know if you figure this out. Good to hear from you and God Bless you, your husband and your children. Dianne Dianne_w Thu, 20 Jul 2006 00:00:00 GMT Dear Lori, Thanks for writing. I wish there was a way we could get in touch with each other. If you read through the posting thread (from Lisa), you will find a shortcut to the ACS website chat room. Name a date and time and I will meet you in the chat room and we can exchange information there. Let me know if you are willing and able to figure this out. I think we could really help each other. How old are you/your husband? When was your husband diagnosed and when was his surgery? And wow, five kids? How are YOU holding up? Must be tough. I find treatment weeks to be the most isolating, worrisome, tiresome and lonely. We're from the Boston area. I work full time and have two kids (ages 7/4) and it seems during treatment weeks there is no time when either my husband, who's "trying" to maintain a FT schedule, and me are not working and when he's not sleeping or sick to even connect for 5 minutes. I find that friends and even family members don't completely understand what we're going through and that the true understanding and comfort comes from those who know what you are going through and feeling that you are not alone. Please let me know if you are able to visit the ACS chat room. I think it would be more than great to diaglogue with you. God bless you and your family, Dianne Dianne_w Thu, 20 Jul 2006 00:00:00 GMT Hi Dianne, My husband will be 44 next month & I just turned 45. He was diagnosed last June (shortly after one of our twins was diagnosed with Type 1 Diabetes, but that's another long story) and we initially thought that he was a Stage 3. It has been one roller coaster after another this past year. How do I keep it together? Some days are definitely better than others and I truly believe that if it weren't for our twin girls I probably would have lost it a long time ago -- they force me to stay grounded. Of course my older three would let you know that I certainly lose it on occasion -- for some reason it is the stupid, little things that set me off. I will defintely try to find the chat rooms -- we've had some bad storms out here (Philly area) and were w/o power for 36 hours -- we were lucky, but I've had internet problems since. Anyway, I would certainly love to chat with other people who understand what I am going through. I truly believe that unless you live through, you truly cannot comprehend what it is like -- and yes, I definitely feel alone & isolated at times. Good news for us is that he just underwent another colonoscopy and everything was great -- and his recent bloodwork came back good as well -- his CEAA levels were normal. I'll take every small victory we get right now. I'll keep checking the posts to find the chat rooms -- hopefully we can chat then & exchange e-mails, etc. In the meantime, try to stay positive -- hold onto ALL the positive news you get. God Bless, Lori Lorid Sun, 23 Jul 2006 00:00:00 GMT Hello there reading your story is almost like reading my own story.  My husband has been diagnosed on November 29th with colon cancer and it's in Stage 3. He is on the Folfox treatments and he just called me today to tell me that the doctor called to tell him his white blood cells are low and he has to go in tomorrow to get a shot.  I have to say i truly feel your pain and I know what you are going through our lives have been turned upside down since november.  I would like to stay in touch with you because even though family, friends have been truly supportive it's always encouraging to know there is someone feeling my pain.  Please continue to be the loving wife that i know you are and continue to pray because God is the only one who can truly help us at this point. Please stay in touch with me. Hisangel32 Thu, 01 Feb 2007 00:00:00 GMT I just read your message from February, a while ago I know but things had been relatively good for us until last week.  We learned last week that my now 38YO hubby has had a recurrence of his cancer to his mesenteric peritoneum and he can't have surgery (microscopic disease) and the there are no clinical trials that he can get into right now.  He is starting the chemo nightmare again on Monday and I am having flashbacks to the worst time in my life.  We were only given 6 months of a normal life before this vicious disease roared back into our life and took it all away.  The doctors are saying that the chemo will not have a long term effect and that his will succumb to this disease.  My kids are 6 and 8 now.  Here we go again.  Please let me know how you are doing.  It is comforting to know there are others out there who understand what you are doing through.  Dianne Dianne_w Sat, 11 Aug 2007 00:00:00 GMT