Bowel cancer treatment and side effects

Trimmer

Lonsurf

My husband has just completed his second cycle of Lonsurf and is coping well, except for the extreme fatigue. Have others encountered this fatigue and does it always accompany the treatment? Best Wishes to all who find themselves on this treatment path. Jen

Kate M

Go Girl @tonibates1 . Well done the pair of you. Fingers crossed for Steve's op tomorrow. @Trimmer and @determinedjoan Am speaking to my GP tomorrow and will ask for 2nd opinion. Wasn't sure of the way forward but evidently now that chemo has been stopped I am no longer under the hospital so back to my GP for any issues. Kate :x::x:

tonibates1

@Kate M you go and give them hell Kate. Refuse to leave the surgery if you have to until they give you something else to cling on to. You can do this! Steve had his operation at 2.30 this afternoon and I got the call to pick him up and bring him home at 6!!!! Hes a legend and so are you. Come on woman you can do it!!!! :x::x::x::x::x::x::x::x::x::x::x::x::x::x:

Sasa

Oh @Kate M I am so sorry to read this, it’s bloody crap isn’t it? I have been absent for a few days whilst Mark is getting used to the new med, Stivarga, which apparently isn’t chemo. I was absolutely dreading side effects having been living through the Lonsurf hell, but actually Mark is a whole lot better on this, a whole lot!

No side effects particularly to speak of, and so he is pottering around as he did before and generally speaking is back to as normal as I dare wish for. Eating is easier and .... wait for it.... he is having normal poos again 🥂🍾

I know he’s feeling better as he is looking for cars to buy again!

There was no talk of how much time he has left, but we didn’t ask. I will keep you all posted on symptoms. We have to fund a biopsy (about £5k) which may indicate chemo or trial options as, without evidence Mark has been written off in a sense. No other chemo is on the table. Personally I hate the idea of first line trials, but I imagine Mark will do whatever he can do to give him more time, even if there is a risk it may hasten the end.

Now looking more seriously at cannabis.... at this rate I will be taking it too!

Love to all of you, release your inner Rottweiler @tonibates1, and good luck with the oncologist appointment @Trimmer

Sarah :x:

tonibates1

@Sasa hey there good morning, go for the THC oil, I truly recommend it! Even gave it to Steve before I left him in hospital, he relaxes and sleeps so well and of course is pain free. Been told to expect changes in his cancer after about 6 months of taking it. SO next month will be that target and then with everything else about to happen we are hoping for the best. Even if you are a firm anti drug person like me, THC is the best treatment he has had, go for it girl! :x::x::x:

Kate M

Good morning @Sasa and @tonibates1 Sarah, so glad to hear that Mark is feeling much better. Yep the whole thing sure is crap!!!!!!! Will look up stivarga - onc has given me a steroid Dexamethasone I thought this was for life but the box says to discard after 30 days so will have to get clarification on that. Have finally been contacted by the palliative care support team (after a 6 week wait) but they only offer counselling in my area and I already have that privately so now waiting for Macmillan to contact me. Some days I just can't believe all this is really happening - I suppose everyone has days like that. It all seems so unfair. But time to pull up my pants and speak to the GP today - will definitely ask for a second opinion (and at a different hospital) Thanks for the support Toni your'e quite a gal yourself. Much love and hugs Kate :x::x:

tonibates1

@Kate M Hey Kate, Steve got his pre assessment form THIS MORNING for The Royal Marsden. And two days ago we were in the same place as you. PLEASE PUSH FOR A REFERRAL AND REFUSE TO TAKE NO FOR AN ANSWER. I cannot believe things have happened so quickly. Just goes to show it can be done. Much love. Toni :x::x::x:

Sasa

You’re bloody Wonder Woman @tonibates1 🙆‍♀️

Sarah :x:

Kate M

@tonibates1 Hi Toni - what can I say - wonder woman indeed! Spoke to GP today (phone call only) and asked him to arrange 2nd opinion PDQ. Said he would crack on with it today and request it as urgent. We did contact the Royal Marsden and Christies earlier in the year but don't feel brave enough for 1st line trials. We live in the midlands so my remaining time would be spent in travelling up the M6 or down the M1 2 or 3 times a week. I have better things to do with my time. I might have felt better about a phase 2 trial but we'll see how the referral goes. Much love and respect Kate :x::x::x:

tonibates1

@Kate M Hello Kate, Steve originally from Birmingham, he said you can come and stay with us so the drive wont be so bad. We live in Kent. Good luck with chasing the doctors and reconsider the trials if possible. :x::x::x::x::x::x::x::x::x:

Kate M

@tonibates1 what can I say - you and Steve are so kind. Am just waiting for the 2nd opinion appt now. My own thoughts are that, if there is no further treatment possible, then I shall use my time seeing my family and enjoying the time left. I would definitely consider a phase 2 trial should there be one however. Although your offer is so generous that would take me away from my lovely 4 year old grandson and I couldn't do that - it breaks my heart now every time I see him knowing that I must leave him. Sorry - sad and scared today. Kate :x::x:

tonibates1

@Kate M, hello my lovely, I try to put myself in your place, but I will never fully be able to. I can only live this through Steve and so only ever second hand. I do understand how you feel about your beautiful grandson, we have in total 3 already born (all boys) and two due this year, one in just 6 weeks and another one in September, HOWEVER, if you've read one on my posts I explain that we don't see any of them, due to their extremely selfish parents, (our two eldest sons). Sophie, our beautiful daughter is having baby Harrison in 6 weeks and we have been included from her first 'pee on the stick'. Steve been to EVERY anti natal appointment and scan and yesterday (her 30th birthday) we got to see him up close in 4D scan. What a chunky little man he is! The other new baby is being born to son no 2 who already stops us seeing our two wonderful little grandsons. So, we don't hold out any hope seeing the new one either. Sad but expected. So YOU enjoy your little man and don't give up hope. Always here to make you smile if I can. :x::x::x::x::x::x::x::x::x::x::x::x:

Sasa

Blimey @tonibates1 , don’t your sons have any compassion? I’m really sorry to hear that!

We love ya!

Sarah :x:

Baxter2

Hi @Kate M

I'm so sorry to read your most recent news. I do agree with you seeking a second opinion for sure and sincerely hope there's something more that can be offered. Sending loads of love and strength to you.

Karen💛💜💚💙❤️

tonibates1

@Sasa love ya right back!!!!!!!!!!!!!!!!!!! :x::x::x::x::x::x::x::x::x::x::x::x:

tonibates1

@Kate M Morning Kate, sorry to bother you at his early hour, but do you mind me asking How is your appetite? I am so worried because Steve has once again gone completely off his food. He actually looks repulsed by the thought of putting anything into his mouth. I don't want to make an issue out of it again, but thought you may be able to shed some light on how you are coping with this? I hope you don't mind. Big hugs. Toni :x::x::x::x::x::x::x:

Trimmer

Just a brief update. Appt today and for the first time Neutrophils are behaving so onto Cycle 4 tomorrow, and scan at the end of this Cycle. Onwards and upwards.

greyhound gal

Definitely onwards and upwards @Trimmer 👍
Great news you can get on with Cycle 4 tomorrow 😀

MrsMoors

Good luck :x::x:

Kate M

@tonibates1 Hi Toni. Have just tried to send you reply and it vanished into the ether somewhere so forgive me if you get this twice! Sorry not to have replied before but have been in Norfolk for 4 days. Needed to escape. Sorry too to hear about Steve's ongoing appetite problems. I don't have any issues in fact I'm eating like a horse - nay 2 horses (no pun intended) so I would definitely speak to his GP or the hospital as something must be going on and it might be relatively simple to sort out. I do hope so as he needs to keep his strength up. Also sorry to hear about your family issues and would you believe I have a similar situation as my daughter has cut me out of her life for the last 10 years - and I don't know why! She has 2 children and I always send Christmas and birthday presents for which I receive a thank you card but that's it. I'm not allowed to see them and my daughter ignores any letters or mails I send her - even under the current circumstances. Back last year I received my final communication from her which simply said NO CONTACT EVER. I have left the children a small legacy each in my will and just hope she will allow them to receive it. So you can see why little Jake is so precious. Thanks @Baxter2 for your thoughts and good luck @Trimmer with cycle 4. Kate :x::x:

tonibates1

@Kate M HI Kate, how strange we both have a Jake in our lives, unfortunately my one is the second son with our two little grandsons!!! Steve eaten a bit more today, and is drinking a lot more. So, that's better isn't it. He has been lying in the sun today and it has done him the world of good. I hope youre feeling better and the break away did some good? Speak soon and take care. :x::x::x::x::x::x::x::x::x::x::x::x: