Hi - new to site, recently diagnosed Stage IV bowel cancer

[samex]

Hi guys, I agree with sticking the pack (I called mine the fashion accessory)in the drawer of the side table - the noise used to keep me awake. I also often resorted to the lounge because of the alarm whenever the cord was kinked! Our nurses at the clinic also had a very 'fashionable' belt with a bumbag type pocket which I used to wear around my waist but some people used to put it over their shoulders. We used to laugh as to what colour we would have each week. I had the biweekly infusion (4-5 hours) of oxaliplatin and the folfox in the jetpack. I also found that loose fitting tops would often cover it quite well when I went out but eventually I just dealt with it and felt that the side effects were harder to cope with than the pack itself!!! Aqua 51, I ope your daughter is doing Ok. I remember my parents were probably impacted on more than anyone else as I was 50 when diagnose (2007). Take care, S

[Cazza]

I am keeping my fingers crossed that your daughters scans show good shrinkage. My cancer is not inherited fortunately for my family although they did say that it only takes one person for it to become a genetic issue so my son and siblings have been checked but are all clear. I had my second chemo yesterday as was encouraged that my CEA levels had come down which shows the cancer is become weaker so at least chemo is working which there is always a chance it won't. Very happy about that. Now we too hope for good shrinkage. I am encouraged every day by the treatment team and their conviction that the new treatments coming out now will help to cure many more of us - we just have to hang in there! Carole

[Cazza]

Dear S Thank you so much for your response. I have the bumbag which I am finding easier to wear to bed but sleep is hopeless it seems - they tell me its the dexamethasone which makes you hyper. At least its only a couple of nights a fortnight. I am 49 and what you say about it being harder on parents is so true. My family have been amazing though. My family are overseas but my sister and sister in law message me every day to see how I am doing and my mother in law here has been amazing. The support of family and friends sure helps you deal with things a lot easier. I note you were diagnosed in 2007 and am hoping that indicates you are now cancer free. It is very encouraging to see people who have survived beyond the 5 year mark. Thank you for sharing your experience Carole

[Rachel_R]

Hi there, I was diagnosed with stage IV bowel cancer three years ago, it was fully resected and I've been clear. Last year I had a PET scan for the first time and they find at tiny little blip of a spot on my liver, so they just went in there and cut it out. The team said they were pretty confident it had been there all along and was so small it hadn't been picked up in a usual CT scan. I was off work for three weeks and now I'm doing a bit of top up "lite" chemo just to clean up. It was entirely optional. I have the bottle every fortnight and I bought some lovely designer body suits from Bendon.com and I just tuck it into that and go to work. I made sure I bought some really pretty ones, my fav is a Stella McCartney one 🙂 When I was diagnosed, they were telling me to prepare for the worst…that was three years ago and I am looking to get chemo wrapped up in March and move on. You can do this too. You'll be fine. xxx

[Rachel_R]

Hi there, I was diagnosed with stage IV bowel cancer three years ago, it was fully resected and I've been clear. Last year I had a PET scan for the first time and they find at tiny little blip of a spot on my liver, so they just went in there and cut it out. The team said they were pretty confident it had been there all along and was so small it hadn't been picked up in a usual CT scan. I was off work for three weeks and now I'm doing a bit of top up "lite" chemo just to clean up. It was entirely optional. I have the bottle every fortnight and I bought some lovely designer body suits from Bendon.com and I just tuck it into that and go to work. I made sure I bought some really pretty ones, my fav is a Stella McCartney one 🙂 When I was diagnosed, they were telling me to prepare for the worst…that was three years ago and I am looking to get chemo wrapped up in March and move on. You can do this too. You'll be fine. xxx

[Rachel_R]

Hi there, I was diagnosed with stage IV bowel cancer three years ago, it was fully resected and I've been clear. Last year I had a PET scan for the first time and they find at tiny little blip of a spot on my liver, so they just went in there and cut it out. The team said they were pretty confident it had been there all along and was so small it hadn't been picked up in a usual CT scan. I was off work for three weeks and now I'm doing a bit of top up "lite" chemo just to clean up. It was entirely optional. I have the bottle every fortnight and I bought some lovely designer body suits from Bendon.com and I just tuck it into that and go to work. I made sure I bought some really pretty ones, my fav is a Stella McCartney one 🙂 When I was diagnosed, they were telling me to prepare for the worst…that was three years ago and I am looking to get chemo wrapped up in March and move on. You can do this too. You'll be fine. xxx

[Cazza]

Dear Rachel Thank you so much for your response. It is great to hear some positive news and I am so pleased you are clear. Did you have to have liver resection initially as well? I have cancer on both lobes and crossing main portal vein plus I have several haemangiomas so they are talking about me being a "complex case" - they are hoping tumours will shrink enough to resect left lobe and let it regenerate and then resect right lobe but only if they tumours shrink enough. Its daunting but I will do whatever it takes. My son has just turned 18 and is off to study medicine interstate - I will be around to see him graduate and then get married and have grandkids if I get my way! May you remain clear for ever. Regards Carole

[Aqua51]

Hello everyone I hope you are all doing well, I keep thinking about you all and wondering how each of you are doing. My daughter Tracey had her scan, the doctors say there has been an improvement but she will need to have 3 more lots of chemo treatments (will make it 11 in total) before they will operate on the tumor in her bowel. Tracey is very fortunate to have 6 very wonderful friends in her life from her early school days, they have booked themselves and my daughter on a cruise in October this year, how great is that, she is so excited....it has given her something positive to look forward too. I wish you all the best in your treatments. Pam

[Cazza]

Hello Pam Glad to hear your daughter is improving and that she has good friends to support her. It is fabulous that they have booked her on a cruise what a wonderful uplifting thing to do. I am very fortunate that I also have good friends who constantly check on how am doing as well as an amazing extended family, although my own family is in the UK they do what they can from afar and my husbands family is here and wonderfully supportive. My 18 year old son moves interstate on Monday to study medicine, unfortunately he did not get a local place. I am sad to see him go as we do not know how things will turn out for me but he is ready to fly the nest and medicine has been his dream since he was very young so I am also ecstatic for him at the same time. My CEA level after second chemo has come down again and I am hoping it continues that way. My oncologist is also now talking 12 cycles of chemo but I have only had my third so we don't really know how things are progressing on my liver until the MRIs which he now wants to do after 6th cycle but it seems things change on a fortnightly basis so we will see what eventuates. I wish Tracey good luck with her next 3 rounds of chemo, each one seems more daunting to undergo but hopefully the end of chemo is in sight for her now. Take care Carole

[Ron50]

Hi Cazza, Good luck with the treatment, I,ve just ended year 15 post stage 3c colon cancer. I was 48 at dx and had 48 weekly sessions of chemo after surgery. No home chemo in those days . I rocked up to the oncology clinic every Tuesday and had a bag of 5fu via canula in the back of the hand. every second week I took 9 tablets of levamisole over the three days after the 5fu. All the best Ron.