Bowel cancer returned

Very kind of you to reply Court. Thanks. 

Thank you Court for reminding us it can be a true chronic condition...much better language than palliative. You give me hope I had bowel cancer in 2018 followed by Kruckenberg tumour in July 2019 that literally grew overnight to the size of a small melon. Had amazing HIPEC surgery in Sydney Australia. Now just found out it has come back in the original C spot, specs in lungs and a benign live spot now lit my petscan. Keeping positive..it is all we can do.

Interested to find out if you have heard of any immunotherapy or non chemo treatment that works. My suggested treatment is more capcitabine and avastin - a blocker of blood to the tumour.

Really appreciate any suggestions.

Hi  sorry to hear your recent news but that has certainly been my mum’s experience although at the beginning it was hard to process .

If you want to see the progress immunotherapy has made you might be better having a look at the American forums as they have been up and running for a few years using Keytrunda. 

My understanding is you need to find out if you are MSI -H or dMMR ( I think ) . MSI now has Keytrunda ( immunotherapy) as first line treatment in the states and there are a few others too! One lady has had success with MSS ( microsatellite stable) but with a high tumour mutation burden . Some people have gone to no evidence of disease and it seems tolerable . My friend used it for a lung primary and cleared all the visible disease from her body . Unfortunately not from her brain where her primary is inclined to migrate to . But she literally had a large spread with has remained clear ! I have been very impressed by the stories coming through . 
I take it you are in Australia?

It took a few years to get my mum’s disease under control and they were not easy for her to endure but then it subsided. 
I wish you every success with you treatment . 
Take special care ,

Court 

Thanks Court am KRAS, MSS and BRAF. So all the very stable mutations. I am the beige blancmonge of genes apparently immunotherapy loves fluro pink genes!

Think interesting work with inhibitors happening in Spain.

Eeally appreciate you responding.

There is one lady I have read of in the states who is MSS but with a high tumour mutation burden and achieved Ned with Immunotherapy. It’s an interesting read as not mainstream use . 

Must look out for that . I like to read what is being accomplished. When my mum started out only chemo was available. No biological agents or anything . Someone said things might be in the pipeline. What an understatement that turned out to be . Great to see things progressing .

Court 

Court 

Hi Gaul, how are you today? Yes I agree it does help chatting on here with people who are going through a similar situation. I did speak to my elderly parents on Wednesday evening. They were both obviously quite shocked by the news and I don't think they took it all in really. I am just trying to stay positive as much as for everyone else's sake as well as my own. Did you tell your parents and son your diagnosis? It is good to hear that you spoke to your brother. I have 2 sisters and I would be stuck without them. I saw Court's reply to you aswell and she is very encouraging. As she says palliative doesn't mean it's curtains straight away, there is still a lot that can be done. Will you be having the "hot chemo" like me? I think I did well after my hemicolectomy because basically I had to teach myself to eat again, I just had more each day and eventually managed to eat pretty much anything I wanted. I always enjoyed my food, apart from when I couldn't eat due to bowel obstruction and the chemo. It is a bit different now as I am being careful not to bloat up too much and have a bowel obstruction like I did last year. I found bananas good for digestion and I used to eat digestive biscuits with butter and hot milk at night to put weight back on. I was down to about 8 and 1/4 stones before my surgery. Not a good way to lose weight. I just polished off some home made apple crumble and ice cream which was good. I spoke with the cancer service at Basingstoke yesterday and she said they will discuss my case next Thursday and let me know. It is pretty scary just waiting for their verdict. I don't know what I will do if they turn me down and I can't help thinking that the longer I wait more cancer will be there to be removed. You may have gone to your bed now as I know you said that you are a lark. I am the opposite a complete night owl. Probably comes from doing a lot of night shifts. I never found it a problem. Sorry what a ramble, thanks if you managed to get to the end of it! Take care 

Hi Lou,

Ramblings good, navigating this website, less so.

• I had coffee with my parents and brother this morning but I didn’t say anything (brother knows) about my, um, situation. The chemo from last time has left me with peripheral neuropathy in my hands and feet (feels like frostbite) which is slow to improve so I have to be very careful walking with a hot cup. 
• I was in contact with my son in Stockholm too but we just talked football. I didn’t want to upset the normality of the chat.
• When I’m a bit wiser about the options open to me I’ll have a rethink.
• (why does every paragraph now start with a dot?) 
• My biggest worry now is the whole month that that I’m told it will take to tell me these options. Like you, I find this to be the scary bit -waiting and wondering. Then it will be Xmas and probably more COVID to follow and meanwhile this wretched disease increases its grip. I have a small pain in my stomach. Or have I?
  On Monday I shall ask my colorectal nurse about ‘hot chemo’, immunotherapy and also what happens if I do nothing.  There’s a bit of me that says that I’ve had a good, full life, 73 is a fair age so what am I hanging around for? ....to be like my parents? No thanks.
• Courts input was great. Something to hang on to.
• I’ve managed a half reasonable breakfast and lunch and as usual have a small potion of cheese and biscuits with a couple of glasses of red this evening. Tomorrow I shall watch Match of the Day then Andrew Marr (I like politics) then have a good yarn with my mate in France (one of four counties in which I have lived)....well, that’ll do for starters.
• You see, I can ramble with best of them!
  I’m going for my daily 2 mile walk now.

Hi Jools, 

Just read your blog and saw that you had HIPEC treatment, I think that this is the treatment I have been referred for as my bowel cancer has now returned, a year after surgery. Would you mind telling me about your experience and what your recovery was like please ? I am fairly scared about going through it and not sure if it will be effective at removing the cancer from my bowel. I am trying to stay positive and not panic about it.

Many thanks 

Lou 

Hi Jaimee,

apologies for the late reply. I thought I had replied earlier. Yes it is difficult at times to keep up the positivity. I am trying to let go of my anger from before my diagnosis and stay strong for the future and hopefully say goodbye to the cancer. We just have to keep going really.

Take care 

Xx 

Hi Gaul, 

How are you today? Glad to hear you managed to eat a good lunch and you can speak to your brother about how you are feeling. My poor mum is very upset, I almost wished I hadn't told her. It is hard telling people isn't it. . I have a friend who is very emotional and well meaning, but into a lot of different herbal treatments which she feels will help me and it is difficult to tell her I don't want them. I seem to go from being really angry about the cancer coming back and blaming myself, and trying to be positive and look forward to the future. I am only 56 and have been fit and healthy all my life. Up until last week I was walking and cycling long distances. 

I have packed a bag for the hospital as I will have to have whatever treatment they offer me, even though the thought of having another operation is making me feel sick.

I had a good walk with my sister yesterday, about 3 miles. It does help to get out in the fresh air and see people. Nice to hear you have a little dog. I would love to have one. My neighbour has about 5 cats who are very friendly but not like having your own. 

Yes I am finding it a bit tricky navigating the site but it's probably my lack of IT skills than the site itself. It is very useful and helps to speak to people who are going through similar situations. Let me know how you get on speaking to your nurse about the Hot chemo tomorrow. I had 4 sessions of the capacitabine and iv, which wasn't much fun. My veins were difficult to find and I had a picc line which kept leaking until the nurse worked out I had an allergy to the nickel in the prongs which held it in.

Oh no! I have rambled on again, sorry about that. Hope you get on OK today and tomorrow. Stay strong and know you are not alone. Sounds like you have some good friends backing you up. 

Lou