After 6 cycles of CAPOX which saw a good reduction in my tumours and 4 months of Nivolumab immunotherapy, unfortunately my cancer is progressing again.
It's difficult, as I'd pinned all my hope on immunotherapy after reading so many success stories of people having great results.
I've been offered a second line treatment of Paclitaxel and Ramucirumab. The latter is only available privately.
Has anyone been on this treatment? How were the side affects compared to CAPOX or similar regimes? Did you get good results?
Thanks.
Hi Jaypoole. I was so so sorry to just read your disappointing news - on another thread you and I seemed on v similar paths - I am awaiting my second scan - am on my last CAPOX cycle and was hoping to be on your likely path of Nivolumab maintenance only. Hopefully you'll get some positive feedback from those who have been on your new regime. I'm still looking at what other new treatments are coming online - very difficult to wade through the vast amount of stuff online, even using AI. Will keep you informed.
Am thinking of you Jaypoole.
Hi jaypoole,
So sorry to hear your news but stay positive, I have read some good results about Paclitaxel.
My hubbie saw his oncologist on Tuesday, no new growths so good news but he is still in terrible pain with his back, they are doing a MRI to see what's happening.
What did they say about your back pain?
My hubby will have to have 2nd line chemo too when things start to progress again.
Stay positive and keep fighting.
Best wishes
Angie
Hi JayP
Sorry to hear that the cancer is again progressing, although I do not know anyone who has had this treatment I believe that it is the second arm of the destiny trial that Dal is on, it is already considered to be an effective maintenance treatment.
Side effects of any of these treatments differ from person to person, but I believe the work that has gone into making this treatment so effective, also combines eliminating side effects as far as practicably possible.
I hope someone who has experience of this treatment can soon respond to your post.
I wish you every success in the future
Lowe'
Thanks Nick.
I'm glad to see you have done well on CAPOX and hope this is evidenced in your 2nd scan also. Don't be disheartened by my results. A lot of people go many months, if not years, as being stable on Nivolumab.
I did see immunotherapy as being my main hope, but will also continue to see what other options are out there. I have a chat with my consultant at tbe Royal Marsden on Tuesday to discuss.
Thanks Angie.
I have new lesions on my liver and a lot of new nodes in my chest. Both of these are probably attributing to my back pain by pressing on various nerves.
I've seen on the other thread that your oncologist wants to speak through some MDT updates with you tomorrow. I wish you all the best for this and hope the news is positive.
So, I am hoping to start Paclitaxel and Ramucirumab next week. I'm lucky to have private medical insurance as the NHS does not offer the latter even though studies show it improving outcomes.
The downside is needing to do a 2 hour trip each way to London for each weekly treatment. But, its hoped I can have future treatments, after the first 2 or 3, at home. This is also a slightly scary thought of not being in a hospital environment.
This has been the toughest period for me mentally. I saw the immunotherapy as the chance for a miracle or at least an extended run. With that not working, positivity is hard to come by.
Hi Jaypoole
What is Ramucirumab, is that another form of immunotherapy?
We were devastated when my hubby couldn't have immunotherapy but our oncologist told us that it doesn't always work and can have long term effects.
Hopefully this new treatment plan will be better for you, never give up hope we all have to stay positive.
My hubby is just awaiting appointment for radiotherapy, the oesophagus is the main issue at the moment the tumour has thickened and is wrapping around the bone/nerve which is causing the back pain, hopefully the radiotherapy will slow the progression and allievate the back pain, he also has a MRI on Saturday.
This cancer just keeps on giving.
Stay strong
Angie
It's not technically an immunotherapy drug, but another type of targeted therapy.
I hope your husband sees good tumour shrinkage from the radiotherapy and that eases the pain.
I'm on fairly high doses of oxycodone myself and have previously been given methadone too which seemed very good at pain control.
Will you travelling to UCLH in London JayP? if so this is where they were carrying out the trial that included Paclitaxel and Ramucirumab, it may be worth investigating whether there are any trials still open there.
Good Luck
Lowe'
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