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Bowel cancer treatment and side effects

elliemillie

No surgery!?

Hi,

Firstly I must admit that I don't usually post on here, I tend to use it more as a research tool and a place to find inspiration when needed. Sorry about that but i have found alot of comfort from your words so thank you ❤

My boyfriend, Harry was diagnosed with stage 4 in August 2018 with distant lymph node affected and liver metastasis. Originally he had an emergency operation to remove the tumours (and relieve him from the bowel obstruction). Everything went amazingly, he recovered well and started chemotherapy (FOLFIRI & Panitumumab). Tolerated it well, terrible skin rash originally but this has been managed with 25mg minoclyclin every morning.
Things were going great,we are only 27 so are looking forward to starting a life (alongside cancer). The Oncologist has informed us that this is not curable and highlighted the aggressive nature of the cancer - we didn't allow this to bring us down and pushed forward with all the positivity we could muster.
During his first review the Oncologist revealed that the treatment has not been as effective as they hoped but it was Harry's choice what he wanted to do. A heavy blow. Scared and worried about missing out on first line treatment he decided to continue with the panitumumab. A few days before Christmas he was rushed to hospital with sepsis symptoms and omitted with the concern of an infection. Throughout this all Harry has struggled with bowel movements, bloating and severe abdominal pain. Recent CT scans, MRI and x-rays have revealed that the cancer has spread in the liver and small bowel as well as 2 larger tumours returning to the large bowel (one is 20cm). Surgery has been in discussion for the past week (Harry still in hospital, unable to tolerate much food and in severe pain, which is not being managed). This morning the surgeon arrived and said she doesn't want to operate as the chemo break is too risky for the liver. Harry's pain still isn't managed. We don't know how on earth we are going to manage this alongside a new treatment. A new treatment brings new side effects, how is he expected to manage this whilst feeling like his bowel will burst and not eating properly.

Any advise would be much appreciated. How can we help Harry's digestion? Any natural remedies? Should we be pushing the surgeons and oncologists more? I hear a lot about the Royal Marsden but when we asked for a 2nd opinion we got referred to the Royal free in London which wasn't very helpful. Should we still be pushing for a referral there and would this affect Harry's treatment in Broomfield (where he is currently treated)? Help!

Sending love and strength, Ellie :x::x:

determinedjoan

Oh poor Harry in pain & poor both of u in anxiety & distress & only 27 years old... what a load for u to have to deal with. Sooo soz to read your post. I truly hope they can get the pain under better control & help Harry to feel more comfortable soon . My heart goes out to u both. Thinking of u & sending love & hugs :x:
Btw- there should be a nutritionist at the hospital who u can speak to for advice about nutritious food for Harry :x:

Gypsy

Dear @elliemillie . I can't offer any words of wisdom except I think that I would push for and insist on more heavy duty pain relief so at least that can be managed. What a terrible situation and you are both so very young at 27. I wish I knew what to say to comfort you. Sending love to you and Harry. Please do let us know how he is. All love, Gyspyxxxx

Lawsey

Dear @elliemillie every sympathy and strength.
Seems the focus has to be on pain relief and getting strength back maybe for now they can do that where Harry is and then look at next stage of treatment.
You are doing everything you can
:x::x::x::x:

Lizalou

Sending love and sympathy @elliemillie (you are the same age as my daughter....my heart goes out to you.)

I agree that the 1st priority is pain relief, fight for that, then move on to the next stage. Others have had lots of positivity from a 2nd opinion, but the immediate problems need tackling first.

I really hope you have lots of support from family and friends. Hugs :x::x:

charleyb

@elliemillie Agree with all that has been said, focus on pain relief and getting stronger, then work out the next steps from there. Can you discuss his pain management with his team? has he a specialist nurse that you can speak to? Gentle hugs to you both and please take care of yourself too :x::x::x:

KatieR

Hello @elliemillie I am sad to read your post and thank you for joining us Do you have a Specialist ColoRectal Nurse who you could talk to We would have struggled without our Sister Helen
Obviously once we discovered this forum we were given So much help and support
There are so many people on here who were given very grim news by their Doctors and are still here many many years later
It seems to me that some Doctors pass on these grim forecasts like they are terrified of getting sued if their treatments are not 100% successful
You need to get your partner as healthy as possible and sorting out his nutrition and pain control is very important
You need to find a Doctor that you like and trust You do not have to stick with someone you have no faith in ... though looking at life from the Doctors side it must be tough to deal with so many very poorly people and they can’t fix everyone
Our Cancer Specialist is incredible He has looked after us like we were family
He’s spent time explaining everything to us and I honestly think he must live in his office because he has been there with us every step of the way
Keep in touch with us on here you will get so much help and support on here
Ask us your questions No questions is silly We have all been where you are now .. lonely frantically worried and not knowing what to do for the best
Cath :x::x:

HH79

Hi @elliemillie so sorry for all this. So he’s had Folfiri & pan ... saw about aggressive - is he BRAF? Can they try Oxilaplatin ie Folfox?
Lots love :x::x: