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

[Cazza]

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.

[customline]

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 .

[Cazza]

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.

[caring_partner]

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.

[Aqua51]

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.

[customline]

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 .

[Cazza]

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

[Cazza]

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

[Aqua51]

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

[Aqua51]

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