Not great news!

Hi Jane ,

Please do write it down if it helps . We are here to listen and support you as that is very difficult news to digest and I totally understand the constant knot feeling . The entire process of waiting and scanning and more waiting is enough stress in itself .

I think it’s very rough to have a waiting list for chemo . Surely he is a priority in his situation !!! 

Have they mentioned Immuotherapy treatment and if that would be an option . I am not sure if you are following the progress being made in the states but they are getting quite good results for patients who are MSI and even now for patients with MSS but with a high tumour mutation burden . Keytruda seems to be the most common agent they are using . Just a thought .

For now though getting him onto chemo and given he has responded well in the past is encouraging . My mum kept responding to the same chemo . At the time her oncologist said as long as she had six months apart he could keep using it . One of their access rules . Not sure if it still applies.

Treatment options have changed so much in the last five years never mind ten years and the market is now seeing more Immuotherapy treatments coming on board . Bowel cancer seems just to be developing the research in this area so we hold on hoping that the development in lung cancer is also on its way for Bowel cancer .

If you have a significant delay getting chemo you could look at getting PALS on board . I think it’s really tough to have to wait for that in your situation . 

I know forums have their limitations but we are here for you and willing to support where possible .

You might also want to talk about maintenance chemo as he seems to do well when he is on it with growth when he is off . My mum was also like that but I see know some people on the Bowel cancer UK forums have continuous maintenance chemo and over the long run seems more effective than chemo breaks .

Sending our love to you both ,

Court 

I mentioned targeted therapy and immunotherapy. They said what they could offer in that was was limited as he also has the KRAS mutation but did wasn't ruled out altogether.

Regarding delays its seems very common in this area. The waiting room yesterday was jam packed, standing room only. It's a case of them keep building houses but no infrastructure to go with it. Their patients have almost doubled in the past 5 years but no extra resources, staff or treatment rooms. I do wonder sometimes if we had been in a different area with less waiting times whether we would be in this situation. A lot of his time has been spent waiting, having to chase up appointments and getting information about his own health is like getting blood out of a stone at times and obviously all adds to the stress. Macmillan nurses have been fab at chasing appointments for him. I think maybe this time round maintenance chemo would have helped but they wanted him to have the break in case he was accepted for HIPEC but the 3 month break turned into 5. His scan was 5 weeks ago so a bit annoyed that they've sat on this info all this time and he could have started chemo already or the wheels put into motion already.

 Thank you as always for your response :-)

Thats awful Jane . Our oncologist works remarkably well but I am always struck that the numbers she is dealing with could give the local airport a run for their money. Everything has slowed in the last ten years though . Scans used to be given results in two to three weeks . Now she won’t schedule an appointment until the report is in her hand . Two months for the last set of scans . Apparently we can’t get radiologists in our area . 

A very long time to decide if surgery was possible!!! However he seems like my mum in that chemo does achieve a lot for him and hopefully if it’s not being stopped this time will give him even more stability.

Immunotherapy is in the background and I do think we will be hearing more about it’s role with other mutations . The pharmaceuticals seem to be jumping on it which is always a positive .

Are you able to squeeze in a wee holiday before he starts chemo ? That was a terrible protracted situation and you will both need some rest and time to recover .

We are experiencing horrible issues with continual new builds . It’s hitting education  and GP s at the moment . The children no longer have desks but rotating round classes and outside areas . Thankfully not affecting the hospitals just yet . 

Are you getting any support yourself . It’s been a difficult journey over the last few years . Wish you were nearer and I could put the kettle on for you .

take care ,

Court 

We just had a holiday. We both knew I think it would be back to chemo so booked one beforehand not that it was very relaxing with a hormonal 13 year old lol. He's just trying to cram in his dental treatment he needs now.  Hes trying tablet form Xeloda this time round as he's suffered with a blood clot in his picc line before so he doesn't relish the thought of a lifetime on fragmin. He tolerated the folfiri really well last time so if he doesn't on this then he will go back to the picc line. His oncologist has never prescribed it before due to the toxicity but she said she's willing to give it a try as hes fit and well otherwise.

Thank you again for your reply. I have some good friends and family I can vent to when needed xx

Hi ,

Thats interesting regarding the toxicity but my mum had it for two years and manage ink. She had to be careful when she took it and kept buscopan handy as she had stomach cramps particularly in her off week . 

One of my teenagers told me it not normal to holiday for more than a week . His first question about the hotel is normally “ is there WiFi” . They do make me laugh .

Take care ,

Court 

ps if the table form was more toxic I have to say it cleared my mum’s liver of mets !! 

Can I please ask you a quick question regarding the tablet form? On Folfiri  previously he would have a few bad days with diarraeh, nausea and tiredness from the time he was hooked up until a few days after being disconnected followed by a week of feeling reasonably well before it started again. I understand the tablet form is given every day? Is that right? In that case do the symptoms tend to stick around longer? He has to wait to see the chemo nurse to answer these questions. The irintecan part can that be given without a picc? Hes really hoping to avoid the picc line x

My mum had a cannula for oxy . She liked getting our straight after the infusion then not having to think about it . I notice now our unit uses pics more too . 

The tablets she took twice a day , morning and night and she had to have her meals at set times . From what I remember the oxy took the best part of twenty four hours to recover from . She had steroids for a couple of days to begin with but took the oral tablets for a full two weeks then a rest week . Her rest week caused her more symptoms than the two weeks on her chemo . Then after a few off days she was recovered in time for her next round . The tablets were easy to get into a routine with and that side was preferably manageable. No particular Bowel issue to manage but colic type pains . 

She liked the fact once she had her infusion she had not to worry about anything else and got into her own stride with the tablets . 

Take care,

Court 

Thank you  thats been helpful :-)  xx