Recently diagnosed and awaiting treatment

Hi Zoe13 and welcome to the group although I’m sorry you’ve had the need to find us. If you click on my profile you’ll find information about my diagnosis etc. I wasn’t the same stage as you and it looks as though you will be having different treatment to me. The chemo I had was Mitomycin and Capacetabine. Will you be having surgery at any stage or is the chemotherapy the only proposed treatment at present? Is the trial drug for the liver lesions? Bev. 

Hi Bev, thanks for your message. It’s so good to hear that treatments do work. There aren’t any plans for surgery for me. I feel like doctors always err on the side of caution which can sometimes make outcomes look very gloomy.
I’d have to check my notes but off hand I’ll be having two types of chemotherapy but they aren’t the same as you had. The trial drug/placebo targets the immune system and I believe the goal is to shrink the primary cancer which will then lead to a shrinkage of the secondary cancer too. I’m hoping that happens as my liver is painful. 
Did you feel wiped out when you got diagnosed? I’m trying to work out if my tiredness is the cancer or my liver. Really feel like my get up and go got up and went. 

Hi Zoe13 a cancer diagnosis is really traumatic and stress does tire you out so I suspect it’s the psychological side of things that will be making you tired. Try to make sure you get plenty of rest at this stage, I know it’s not always easy to sleep though when you have things preying on your mind. It sounds like the trial drug is some sort of immunotherapy, this works with your immune system and as I understand it sometimes doesn’t have the side effects to the same degree as chemotherapy can have. I see you start treatment next week so try and rest up and if you find sleeping is difficult you can always contact your GP. Just after diagnosis I had difficulty sleeping even though I was tired. My GP gave me a sort course of Zopiclone which helped me get to sleep. Bev x

Hi Zoe13,

Welcome to a warm and supportive group. Stay strong! I hope you and your children are doing okay; I'm 50 with three boys, the youngest are 12 and 15. The initial diagnosis is overwhelming, but everyone here is genuinely kind and helpful. Hopefully, the immunotherapy doesn't have many side effects and will work to shrink any growths on your liver. I'm in the U.S., but I know Opdivo (Nivolumab) is used for SCC that has spread to the liver with good results - does this sound familiar?

I was very tired and achy after being diagnosed - I think some of it came from stress and tension. Like Bev, I wasn't sleeping well. Pamper yourself if possible!     

Sending you all the best in the next months ahead! You are not alone.

All the best,

Sarah    

Hi Bev, that could well be the case although I don’t consciously feel stressed. I’ve been tired for about a year, just put it down to age/being very active.
I don’t really feel like I’ve dealt with the emotional side of things because I find any emotions just weigh me down and I’m happier when I just focus on my medical appointments and treatment and seeing what happens. I think I’ve just been hit by the menopause too. Still sleeping, no problem but good to know there are options if that changes. Thanks 

Hi Sarah, thanks for your message and good wishes. I’ll have to check my notes to see if those drugs correspond. 
Doctors have advised that I’ll feel less tired if I do more activity. I’m not sure they fully understand my situation?! 
Friends who have had breast cancer have both suggested taking things easy and pampering myself...guess that’s what I’ll do!

Hi Zoe I’m linzey I’m 40 and was diagnosed with this ‘thing’ in January ! Mine 2 has been described as advanced as I also have a10cm tumour . I’ve had to wait till a few week ago to start treatment as I needed a stoma (colostomy bag) so I’ve had to wait for that to heal up etc. Seemed to take forever !!! Anyway I was due to start radiotherapy with a chemo tablet until they doctors did a last minute cat scan and found a rogue lymph node out of reach of the radiotherapy.... so they’ve changed my treatment to chemotherapy once a week for 3 weeks with a week off . I’ve just completed my first cycle so I’m on my week off . It’s not been too bad I’m on carboplatin and paclitaxel. I have both the first day then just the paclitaxel the 2 other days . I usually have 1 tired day a week n when I say tired just can’t be bothered day and that’s been all !! I take anti sickness tablets x3 a day just a little tablet for prevention rather than waiting till I feel sick .. must admit I do forget to take them and haven’t actually felt sick ! I have a ‘lesion’ on the outside of my bum aswell which was the original reason I went to the doctors only to be told it was a thrombosed haemorrhoid and an abscess ..... my lymph nodes in my groin started swelling and eventually I seen another doctor who rushed through an ultra sound scan then ct scan ... mri . The main thing for me ( I’ve got 3 boys 3 ,12,13) I live on a farm I’ve got horses because Of this on my bum .. (it’s like in between my bum ) so it really aggravates n does hurt so I’m limited walking n standing obviously can’t ride .. can’t really help with lambing ... anyway I’m whining now .... but someone here to help you .. feel free to private message me I don’t mind going through this with you . Much love linzey Xxxxx 

Hi Linzey, Good to hear from you, only just spotted your message. Sorry you find yourself in this situation too! 

I’ve also got what I imagine is a haemorrhoid but I’ve had them for years and no one has commented on it so I’m assuming that’s what it is. Have you seen those special cushions with the hole in the middle? Not sure if they work, just a thought. 

Gosh it must be really difficult for you with three boys and a farm to run. It’s so frustrating not being able to do what you could a few months ago. 

Since my last post I’ve started chemo, same as you apart from I’m on a drug trial too so I either have a placebo/immunotherapy on the first week too. Since starting treatment I’m beginning to feel much more ‘normal’ although the diarrhoea has hit me hard. Had to just miss a session due to low white blood cell count.

would love to hear how you’re getting on xx 

1. Hi Zoe13lI’m doing really good !!! My oncologist said he hoped I’d cope well with it and I do seem to be doing ! I only tend to have a tired day a few days after my first cycle day that’s when I have the two chemos together . My nurse has said judging from how I am now the signs are really good that the chemo is working . I’ve tones more energy I can drive again I can sit on my bottom I’ve been lambing sheep and I’d say I’m 85-90% me again !!! I’ve got a scan on the 27th of this month to see how the rogue lymph node is ! They can’t confirm it’s cancer and it wasn’t there on my last mri/ct scan but the pet scan picked up on it . So they’ve attacked it will full force on the just incase it is basis ! I have a face to face appointment with my oncologist next week just a check up really my last one was done over the telephone as we were lambing so she wants to see me this time . My only problem is the tumour on the outside of my bum . It’s just where it is .. it’s so annoying ... aggravating!! Your sounding in a better head space at the moment I really hope your well! It’s so very difficult I had a melt down last nite I think it’s that time of the month but seeing as I don’t know when they are any more Im only guessing . Take care message me anytime Xxxxx linzey xxxxxxxx

Linz17  Great that you’re doing so much better.  Was hoping you’ve been too busy chatting up your sheep to write:)

Hmm, only one meltdown a month?  I’m sending you an emergency bar of plutonium...  xx  toni