Change in treatment plan, capox before radiotherapy and operation

Hi 

Good to hear you have a plan . I am just going to pop this back up to the top as the forum has been busy today and maybe give people an opportunity to reply !

My mum always had pre op chemotherapy and it was incredible to watch the bowel tumour shrink . Although her location was different to yours as was her plan but shrinkage is shrinkage . You might also like to have a look at Hayleyc89 husband situation. Again a different location but has had chemo to shrink the tumour first with a good outcome . In fact I attribute the chemo as part of her long term survival.

Take care ,

Court 

My Husband was diagnosed T4N1M0 left sided bowel cancer on 31.10.20 he had been in complete agony for 5 weeks being sent home from the GP and a&e with laxatives being told he was just constipated! Only on admission to hospital after I stressed to them that something was seriously wrong was he given a CT scan where they found the tumor. On 3.11.20 he was taken to another hospital where a colonoscopy and biopsies were done and also a stent inserted into he's bowel.

My husband started he's 1st round of neoadjuvant chemotherapy on 22.12.20 he had oxalaplatin,irinotecan and 5fu had this fortnightly and the 5fu pump stayed on for 48hours each fortnight my husband had 6 rounds of this chemotherapy and on 4.3.21 he had the final lot followed by a scan 2 weeks after. On 24.3.21 we got fantastic news that my husbands tumor has shrunk form 24mm to 15mm and he can now have surgery to remove the tumor on 19.4.21 what a journey it has been but we can now see light at the end of the tunnel.

I have just been to oncologist to decide treatment  for mid rectal cancer 3 cm with enlarged glands...and have been put on Xerox (or Capox)  with radiotherapy after chemo has finished...wonder why I can't have both together? I wasn't allowed the time to ask many questions....

i was first told at sigmoidoscopy by the surgeon that he would operate before the end of the month...which made me feel better...but now I have been told I won't have surgery yet and  to wait another 3 weeks before starting chemo for 3 months...and then radiotherapy ...but she wouldn't tell me about that or for how long...in fact...she said she was busy and had a lot of people to see...so I wasn't able to ask all the things I wanted too...also the nurses gave me the feeling that I was being a nuisance....and if I repeated myself they would say we have already told you...and you are getting the best treatment ...I know they are doing their best...but I just wish they could be a tiny bit more sympathetic...as I'm in a terrible mess....I get the feeling that they are thinking there are a lot more people younger than me (Iam 69 in a couple of weeks) )......with a worse prognosis...and I am very aware of that...and it makes me feel even worse and ashamed that I am not coping bravely like most people....

All the side effects of the drugs are so life threatening..that I'm wondering how I will cope...I will be constantly wondering if I won't be able to breathe....get a blood clot...how will I know if I have one of those? A heart attack.....I already get palpitions...so won't know The difference....not to even think about sepsis  .....and the helpline number says if no one answers...they will get back to you in half an hour....but you could be dead by then....it's all so scary.....and what if the treatment doesn't work after all that time....all that time wasted and it could spread everywhere.....

i would love to know if anyone else has had this treatment and been ok and it has worked to shrink the tumour...and how soon after treatment it is possible to have surgery to remove it....I know everyone is different....the oncologist said it would be more difficult to remove the tumour cleanly as it's mid rectal...and if it had been in the colon area would have been easier...

i also have a hiatus hernia which makes my throat constrict a bit when I eat...and also lose my voice for a bit....I take gaviscon which helps....think it's called silent reflux...so that is a worry with the throat spasm thing.....I would be so grateful for any advice...as I have no one to ask....the nurses aren't approachable....when I have rung them...with anxieties..they just get impatient with me...so I just end up saying how sorry I am for bothering them....and end up getting nowhere....I feel a bit better for writing all this down on here

Hi 

I am so sorry you did not feel you got the chance to chat through your questions or concerns . The helpline staff 0808 808 0000 would be more than happy to discuss them with you . 
My mum’s oncologist told her 1/3 approximately will have no symptoms or very mild symptoms , 1/3 more moderate but get help to manage them . And the other group have a more difficult time so certainly most don’t have the majority of side effects .

The spasm of the larynx mainly happens just after treatment for the infusion and they deal with it by slowing down the infusion and adding in other treatments to prevent it .

My mum had chemo over two years and only had that once . We took a little flask with tepid ( not boiling ) water for her to sip on the way home if required. Once my mum realised her airway was wide open despite the sensation she was less afraid of it . 
But please give our team a call on the hotline . They have time and totally understand your concern over this which is completely valid and a big life event . Once you have your questions answered you will feel more confident in the process . People spend time researching a care so why not your health . It’s reasonable to ask . 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/chemotherapy-for-bowel-cancer

I have included a link for information on chemotherapy for bowel cancer which might help a little . 
https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/radiotherapy-for-rectal-cancer

This one covers the radiotherapy aspect and I think it’s roughly after six weeks till surgery ( roughly) . 
Hope it helps some ,

Court 

Thankyou very much for replying ...is there anything I can do to stop cancer spreading while I wait another 3 weeks before starting chemo? If the lymph glands are enlarged as they say...does that mean they are cancerous and will spread quickly...and does it make any difference which side the mid rectal cancer is on? Also...is it more of a worry  that iit has been bleeding for 3 months ....the waiting is almost unbearable

Honestly I don’t think I have seen anyone on line have their cancer spread between scans and treatment. It is a difficult time but I think keep reminding yourself it has not spread and going to be removed from your body. It is quite common for people to have lymph node involvement and the surgery removes it all . 
My mum’s were defined are reactionary ( swollen) yet after pathology they did not in fact have cancer in them .

Its a tough process and we are here for you .

Court 

Thankyou so much for getting back to me again....hope you don't mind me keep asking questions. ...I can't really talk to the cancer nurses at the hospital, as they seem to get impatient with me...and are so busy...which I understand...they have a lot to deal with.......it's just that...I thought I was going to have an op to remove the cancer....and now they have changed it....3 months chemotherapy...and then a rest and then radiotherapy...I asked why I could not have chemoradio at the same time...but the oncologist wouldn't tell me...and when I asked about how long the radiotherapy would be...she wouldn't tell me...saying it would be too much to deal with....but that made me feel worse...as it would be nice to know what the whole plan is...I'm afraid that if going through 3 months of chemo...and then more months of radiotherapy ...and it doesn't shrink the cancer..then all that time has been wasted....I know I shouldn't keep thinking about what might happen...but I can't help it....and as they said if it had been in the colon, it would have been easier to remove...as mine is mid rectal...they said that is harder to remove as it's a smaller area....I wish I could know more.....also...all the possible side effects are so scary.....so many serious ones....Thankyou for your replies...I really appreciate it

I don’t mind at all . You know if you are unsure about it and don’t feel you are getting sufficient answers you are entitled to a second opinion . It may even just help you get your questions sorted out . Your GP can help arrange it . These are real and valid questions.

It is totally your decision but it might be a way to get your questions answered.

Take care ,

Court 

Thankyou...I have read about getting second opinions...but they say that takes time....and more scans and more waiting...and would that mean going to a different hospital?  I am being treated at Poole in Dorset which is about just under an hours drive....I've been told they have a good cancer treating record....and what with covid...maybe I should try and be patient...and hopefully they know what's best for me.....Thankyou ...

Hi. Your diagnosis is different to my husbands but I fully understand your worries and anxieties as me and my husband were the same. The only symptoms he got from chemo was fatigue, nausea and sensitivity to cold he's hair has thinned too.

My husband has been told he can't have radiotherapy due to the tumor location but thankfully the chemo has shrunk the tumor so he is able to have surgery on the 19th April.

It's all quite new to me still I don't understand all the terminology but I just thought I would share with you my husbands experience of chemotherapy. They have to tell you all the risks etc but our nurse told us that in all her time being a nurse she has only experienced the symptoms such as fatigue,nausea and hair loss.

Take care and all the best xxx