topic Re: Hi - new to site, recently diagnosed Stage IV bowel cancer in Living with cancer

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

Cazza — Fri, 10 Jan 2014 00:53:16 GMT

Hi, I was suddenly and unexpectedly diagnosed with Stage IV bowel cancer in early December. Huge shock as I had no symptoms and it was an incidental finding. It has taken six months to come out of the fog. I started treatment yesterday and was pretty anxious but so far so good - I am on folfox/avastin and most of my treatment is over 46 hour at home. I didn't sleep last night its hard to know what to do with the pack when you are someone who tosses and turns all night so any advice on how to deal with that would be much appreciated! Look forward to sharing my journey with you and hearing about yours.

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

customline — Fri, 10 Jan 2014 07:31:00 GMT

G'day Cazza ,I was diagnosed with stage 3 bowel cancer ascending in july 2009 after emergency Surgery to repair a perforated bowel. As you say it is a huge shock .I had folfox and most of my treatment was at home with the pump .My Oncology Nurse Gave me a vest with a pocket to hold the pump bottle and I found it to be quite comfortable and secure .If you know of anyone who is handy with a sewing machine you could make one .Where are you ,I am North of Melbourne and had my Treatment at Northern Hospital and I could not speak highly enough of my Nurses as they were very helpful.Listen to your body as it will tell you when things go belly up .Do not lock your self away ,get out and enjoy while you feel good because as sure as night turns to day you won't want to get out of bed tomorrow .No one can tell you what you will feel as everyone is different as I am sure you would have been told by Nurse.Please send me a Private message here if you like. I look forward to hearing from you .Good luck in whatever you decide .

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

Cazza — Fri, 10 Jan 2014 09:03:35 GMT

Thanks for your response Graeme. It's nice to hear from someone who has had the same treatment. The idea of a pocket is a great one, I will get something made up. I am in Adelaide. Thanks for the advice on listening got your body, I am trying to do that, if I had perhaps listened in the first place I wouldn't be here today but I was pretty much symptomless apart from some fatigue which was put down to my hypothyroidism. I hope that you are all clear and remain so and am keeping my fingers crossed that the folfox/avastin will shrink the tumours enough to resect. Take care.

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

caring_partner — Fri, 10 Jan 2014 12:54:22 GMT

Hi Cazza. It is such a shock isn't it. My husband had virtually no symptoms as well. He thought he had a pulled muscle in his tummy and when they did the colonoscopy he had stage 4 bowel cancer as well. He also was on the same regime as you and he used to unroll the tube at night and put the pack in the top drawer of his bedside cabinet. Hope you can find a way to sleep with it attached. Wishing you all the best with your treatment. Regards Gail.

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

Aqua51 — Sun, 19 Jan 2014 15:14:35 GMT

Hi all, I am a very concerned Mum and never thought I would ever be posting on a cancer forum, however I am and would it be so bold of me to ask what is the 'PACK'. My eldest daughter (aged 45 years) was diagnosed with bowel cancer last October, I don't know what stage it is, all I know is that it has spread to her Liver. She has had three lots of Chemo so far to try and shrink it and prevent it from spreading to her other organs, once they have the tumor under control they will then operate on her. Thanking you in advance and listening to me ramble on, wishing you all the best in your treatments. Pam.

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

customline — Sun, 19 Jan 2014 20:27:43 GMT

G'day Pam ,asking questions is what helps us all even if you think you're rambling on .It sounds like you're daughter has stage 1V Bowel cancer .The Pack (also known as the Pump) is a plastic bottle attached via tubes and usually an arm port and it allows the patient to go home while still having treatment .It is in place approximately 48 hrs and then is disconnected .until the next session .Do you go with you're daughter to her medical centre .I ask this because someone should drive her there and home after .

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

Cazza — Sun, 19 Jan 2014 22:53:35 GMT

Thank you Gail. I hope your husband is doing well.

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

Cazza — Sun, 19 Jan 2014 23:02:44 GMT

Hi Pam Sorry to hear about your daughter. I myself am 49 and have just had my first treatment. My treatment includes a 46 hour infusion at home but your daughter may not be on the same treatments as me. Some people do not have this they may take pills. I am in the same position as your daughter. It is too widespread in my liver and on both lobes to resect so the hope is the chemo will shrink the tumours enough and then they will try to resect liver in two stages removing the left lobe first and allowing regrowth before resecting the right - if all goes to plan. The issue is they also need to resect bowel and do not want to do this at same time but do not want to put me through 3 major operations either. It is just wait and see. I hope your daughter is responding well to chemo and that she has a positive outcome. Carole

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

Aqua51 — Mon, 20 Jan 2014 04:08:48 GMT

Oh thankyou for your replies, now I know what a Pack is, completely different from my daughters treatment. Maybe because we live in the country, every 3 weeks my daughter will fly to the city and have it induced into her vein. This is a day procedure then she will take 6 tablets (don't recall their names)a day for two weeks then will have a week off. She seems to be coping pretty well except for the tiredness, metalic tastes and unable to touch, drink or eat anything cold. Unfortunatly they can't cut the damaged area of my daughters liver out because there's too many spots, the doctor says they can only try and contol it. Yes Customline our daughter stays with her 23 year old daughter for a few days in the city (she lives there)and she drives her to and fro to the hospital. I stay at home to help look after her other two school age children as she is a single Mum, they don't have their Dad. My daughter will have her 1st scan since the commencement of the Chemo treatment next week..so we all have our fingers, legs and eyes crossed (Lol)the tumor has shrunk. Our daughter wants us all to stay strong and we are not allowed to think anything but positive and we are not allowed to shed any tears! She is so strong about it all, we are all so very proud of her. Your also very young Carole, does your medical team think you have inherited the cancer, they seem to think our daughter has. I hope and pray all your treatments goes well for you Carole and the same goes for you Customline. I just wish I could just wave my magic wand and everyone will be cleared of this horrible nasty cancer. Pam

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

Aqua51 — Mon, 20 Jan 2014 04:14:30 GMT

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

samex — Thu, 23 Jan 2014 10:52:29 GMT

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

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

Cazza — Fri, 24 Jan 2014 01:30:10 GMT

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

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

Cazza — Fri, 24 Jan 2014 01:36:05 GMT

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

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

Rachel_R — Fri, 24 Jan 2014 10:01:37 GMT

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

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

Rachel_R — Fri, 24 Jan 2014 10:01:45 GMT

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

Rachel_R — Fri, 24 Jan 2014 10:02:04 GMT

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

Cazza — Sat, 25 Jan 2014 07:33:46 GMT

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

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

Aqua51 — Tue, 11 Feb 2014 15:14:15 GMT

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

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

Cazza — Sat, 15 Feb 2014 03:54:35 GMT

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

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

Ron50 — Thu, 27 Feb 2014 21:13:59 GMT

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.