Post treatment scans - not good news

Oh Crysaltipps,

 I am so very sorry to hear that and can understand that you feel devastated. What a total shock for you and seems so out of the blue. 

I know that there are others on the forum who have had liver mets and hoping they can help.

There aren’t any adequate words but huge hug to you right now. Xx

Hello Crystaltipps73f2a8

I received similar news on Wednesday from my PET scan results and I am so sorry you have also received bad news.

I am sure somebody with similar outcomes will come and chat, but you might want to take a look at the stories on the Bowel cancer UK site and Macmillan colon forum.

These stories give great hope for people in our situation. Surgery being offered after the success of chemo and management through chemo that can give us many more years. You have had great success with your main tumour, it's also possible with combinations of treatment you could go into total remission.

Sending positive vibes and hugs.

Ally xx

Hi Crystaltipps73f2a8 Im so sorry, i cant begin to imagine how you are feeling. There are people in here who had liver mets so hopefully they will see your post and be able to help. Sending hugs. Xx

Hello Crystaltipps73f2a8 

I am so so sorry to hear this - you must be reeling and I can completely understand why you are feeling gutted.

My situation was somewhat different in that I was already stage IV at diagnosis with a spot on the lung and had systemic chemo (carboplatin/paclitaxel) for six cycles prior to any other treatment.  I really tolerated this quite well, a few hiccups but it was a lot easier than the chemo/radiotherapy that I had after a break of a couple of months.  This first chemo is more or less the standard for advanced cancer and has in a lot of cases has proved to be very effective at treating mestastasis.  So I think when they talk about an outside chance of surgery, it is because they really don't know how an individual will respond but in fact may sometimes - but not always - lead to more avenues of treatment.

If you do have this systemic chemo, you will lose your hair, but I found a seller on Etsy who sold lovely soft cotton caps and even made them in colours to match my summer clothes.  I had bought other caps which were tight and uncomfortable like swimming hats but hers were very reasonable and comfortable.  I had tried the cold cap and lasted all of two minutes.  Happy to share details if you want. 

When I had the systemic chemo most of the oncologists I saw constantly told me they were waiting to see the outcome before progressing to the Nigro Protocol but after two lung ablations that is what I eventually had.

I hope that they quickly come up with your treatment plan.  Needless to say this is such an awful rollercoaster for you but please remember that we are here to help and support however we can.

Big hug

Irene xx

Thank you Irene. This is so helpful and at least a little reassuring. If I’m offered cold cap I will try it but I would love details of your Etsy lady. And if all else fails I’ll get a bright purple wig! 
Sarah x

Hello Crystaltipps73f2a8 

This is her https://www.etsy.com/uk/shop/BeautifulYouuHats?

I bought an extremely expensive wig but my dramatic hair loss started when we were in our camper van on the Isle of Skye and my wig was languishing in the box at home.  The routine on Carobplatin/Paclitaxel is three weekly treatments, two weeks off.  We were on the first two week break when the hair loss started.  Prior to treatment I had decided that I wasn't going to struggle on with wispy hair and would clipper it off when the loss started.  I didn't expect it to happen on a camp site but my husband spoke to the manageress there about locating a hairdresser and unbelievably, that was her trade.  She took me to a private room and cut my hair and I put on the one cap I had with me. This lovely lady wouldn't take any money and just asked me to return when I am better.  It was summer and I never did get round to wearing the wig!

Irene xx  

I will definitely learn from this and travel prepared! Thanks so much for the link. I’ll check it out. x