Struggling today

Hi,

Sorry I haven’t posted for a while but I was on pre-treatment holiday and caught up in the whirlwind of preparations. But I’ve been reading your updates and see how you’re doing.

So great to hear everyone’s progress and well done to everyone on the strength and good humour you all clearly have.

Things have changed a bit for me. Post-MDT MRI showed the surgeon that he “probably” could remove it with clear margins but that he wanted to aim “higher than probably”. Seems smart to me! The issue is mine is a high rectal tumour (T3a N0 M0) and I’m a narrow hipped man so there’s not much room in my pelvis to operate.

So plan now is neo-adjuvant chemo for 3 months then surgery to remove it once it’s shrunk. Chemo due to be 6 two-week cycles of FOLFOXIRI starting in a week or so. ONC said my reward for being young, otherwise healthy and pre-op was that he could throw an aggressive regime at me. Again, seemed smart to me. Although it does mean hair loss and staying out of the office to avoid infection  

Does anyone have any experience with pre-op chemo or FOLFOXIRI? I think it’s generally used for stage 3 and stage 4 cancers.

Hi Parky2170. You are lucky there not to have restrictions. Don’t know if your keeping up with what has happened here with the government having parties while they put us all into lockdown last Christmas, like everyone so sick of this virus. In hospital for two weeks and one visitor my husband for an hour. Do you know how long your chemo will go on for? I’m know I’ve been in this cancer whirl since June last year, but the surgery and chemo is all new to me. Yes I had tablet form but I think they said iv a bit stronger this time. Well done for being so positive and helpful. Xx

MartinHerts

Just wondering if Star74 had that it would know if someone . I think Hayleyc89s husband had it .

Goid news the surgeon sees an option there and better margins is totally understandable.

All the best with chemo . My mum has neuropathy from her chemo but over the years she seems to have found a way to work round it . 
Take care ,

Court 

Hi yes my husband had that chemo for 3 months and it worked for him shrunk he's bowel tumor so he was able to have it removed he didn't lose he's hair side effects he did have were fatigue, nausea and some tiling sensations in hands and feet.

Good to know. Any top tips? I’m not too worried about hair loss - more worried that my treatment centre sent me a “dummies guide” on make up my eyebrows and fake eyelashes! I can imagine making a right mess of that!

yes it is good news. The surgeon gave me the ‘option’ of having it removed as it is. He died some people just want it out ASAP which made sense. But he (plus the onc and cns) both said this was the recommended option. Felt like a very empowering way for them to manage a patient. 

m

He was given different medication to help with the side effects so anti sickness for the nausea and things like that he's skin also went dry so stock up on moisturiser! Liquorice and ginger biscuits helped with the nausea too.

I advise you to wrap up very warm after treatment my husband suffered terribly with the cold.

Hi MartinHerts  yes, I was on folfoxiri, like you, my onc said because of my age (46) she was able to throw everything at me.  I had good results, I was stage 4 with inoperable spread to the liver.  I responded well to chemo and 4 weeks ago had a liver resection. 

I was fine after the first couple of cycles, didnt really feel much different, but it is cumulative and the side effects gradually build up.  I just had nausea, mouth ulcers, insomnia (due to steroids) and the tingling in hands and feet, bit like pins and needles when you touch something cold.  I didn't really loose my appetite but i went off certain foods, sandwiches oddly enough and even now, I can't face a sandwich!!  The chemo nurses are fab and I had a call with my onc before every cycle to discuss how I was.  Mention any side effects as there is usually something they can give you.

Wrap up warm when you come out, the downside of having treatment in the winter is the cold setting off the pins and needles, sometimes it can affect your throat, especially the cold air or if you drink a cold drink, I didn't suffer with this one but they told me to drink something warm and it goes away.  I kept all my drinks out to reach room temp.

I didn't loose all of my hair but it did thin quite a bit, can get away with a cap or hat though and nobody knows.

Good idea to have a pre-treatment holiday, you should be raring to go now!  All the best, let us know how you get on.

Make sure you drink plenty of fluids, you can get dehydrated very quickly.

Thanks for the tag court hope you are well!

Nelly1955

yes I see and keep up with what's happening in UK. and Europe. My mum are brother are both still in UK. I was over in UK last xmas for 7 weeks nov to jan to help mum etc after she had 3 vertebral compression fractures and was very immobile and unable to live independantly at that time so I was caught up in all the lockdowns whilst there plus 2 weeks home iso on arrival and 2 weeks hotel quarantine when I returned to AUS.

I wanted to view some care homes in preparation should mum have needed it and had to do most by zoom, some did let me visit ( which was a worry in itself)

I hadn't been in UK for an Xmas for 25 years so was looking forward to a lovely cold xmas ( hot Xmas's just not the same even after all this time) with fam and friends but that didn't happen and ended up just mum and myself, which I think upset her even more ;) so now seeing the shenanigans Downing St were up to whilst we all followed the rules is pretty annoying especially in my case ( and I'm sure for most other people too) 

the pleasure of my 'lesser' chemo regimen is it lasts 30 weeks:(((. I would imagine you'll get Oxi in some form or other this time. maybe folfox?

Seashelley if you do set up a private chat pls include me, who knew Chelmarsh initial thread would bring so many of us together in such a postive and supportive way. When I did BC chemo I was on a breast cancer forum in USA and there was a group of about 6 of us went thru chemo at same time and a couple of us still msg on fb occasionally 8 years on

MartinHerts. excellent news re neo-adjuvant option

haha re eyebrows etc.  I lost all my hair, eyebrows and lashes etc 2013 and 'did' the learning your makeup course and wasn't much good at it.   I did have a great Tina Turner wig for awhile b4 I braved rocking the bald... I think we wrongly assume loosing your hair for men is not as bigger a deal as women but on reflection that's a bad assumption to make. 

We have my work xmas party here tonight ( at my house) for 45 people thank goodness I feel up to it, the prep, the entertaining and the clean up. usually its about 30deg this time of year with warm evenings but today is looking to be 24 and down to 13 tonight so might be a chillier party.  14 sleeps till the fat man arrives ;) 

Sue x

so annoyed just did a long response and it never posted 

Nelly1955. yes I follow UK and Europe developments. I was in UK for Xmas last year ( first time in 25 years) supporting mum when she was going thru a few health issues. we ended up a very quiet xmas just her and I and couldn't catch up with the bro and friends etc so the shenanigans at Downing Street somewhat annoying to see when we all did the right thing.... it was lovely to have a cold xmas I still can't get used to AUS hot ones.

I would imagine they'll throw some oxaliplatin at you this time in some combination or other . maybe FOLFOX ? for the pleasure of my 'lesser' regime I get 30 weeks rather than 12 not sure which id prefer short and sharp or slow and steady ( whatever works I guess). 

Seashelley. who knew Chelmarsh's thread would develop into such a great group of supportive peeps, pls include me in your private chat group?  I had a similar US group for my chemo 8 years ago and 2-3 of us still occasionally communicate thru FB 

MartinHerts great news re neo adjuvant option...  you made me laugh re eyebrows and eye lashes, I did that makeup course 8 years ago and still wasnt good at it but I had a great Tina Turner wig until I plucked up the courage to rock the bald!! 

14 sleeps till the fat man drops down that chimney !!  apologies if this response ends up on the thread twice I shall copy this b4 I post incase I loose it again

Hi found some notes i had written down and i’m stage 3a as there was some cells on the fatty tissue near the tumour, nothing in 19 lymph nodes  and M0 not as good as i hoped but will have to deal with it regardless