Welcome to the forum from me too! Sorry to hear about your diagnosis. is currently using Immunotherapy so I have tagged her in and hopefully she will be able to tell you about her experience. Are you hoping to use it ?
HiTikki Welcome to the forum, sorry to hear your diagnosis.
As court mentioned I am currently having immunotherapy.
I was diagnosed last March with bowel cancer following the testing programme, I had a right hemicolectomy and a temporary ileostomy. At the time there was no spread to other organs, however there were residual cells remaining on the duodenum for which I was given folfox. I was due to have 12 treatments but only managed 6 due to an allergic reaction to oxaliplatin. My consultant thought this would be enough but the scan showed a growth so was given 5.5 weeks of radiotheraphy and 5fu. This had no effect whatsoever so was recommended to have Nivolumab to hopefully shrink the tumour which was now 1.5 inches. I had my 1st infusion on 30.12.2020 and a scan after 4 x fortnightly sessions showed a slight reduction in the tumour and 1 affected lymph node. I carried on with the treatment and had another 6 sessions, but unfortunately suffered a blocked bowel due to adhesions and scar tissue on 1 May 2021.
I had numerous scans and X-rays and an operation to unblock the bowel during which they had a good look around and found no visible cancer! The tumour has gone! This has been confirmed this week by my consultant following MDT meetings.
I will continue with monthly infusions to hopefully keep the cancer away! The immunotherapy for me has been so much more tolerable than chemo. I was able to return to work and live a normal life. I am type 2 diabetic and this has been the main side affect in that it has become worse but can be controlled by changing my insulin, and my thyroid is teetering a bit on the high side, but all controllable with tablets.
My tumour was MMRd and was receptive to the immunotherapy. I know that it’s not a suitable treatment for everyone.
My consultant was amazed with my response, and so was I! I feel very humbled and grateful for the care I have received and will continue to have.
I hope the treatment is suitable for you and I wish you good luck in your journey. It’s not easy but it’s so much better if you have faith in your team.
Thanks phoebe for sharing your story. You are so strong and sorry you had to go through all this.
This is the 3rd time I have been diagnosed. I had half my colon removed in 1999 at 23yrs, then totally removed in 2014 but did not need any treatment thank goodness. But now it has spread through my lymphatic system due to enlarged lymph nodes but the docs still cannot find the tumor. I have had every test you can think of. PET scan was the worst. But because of my past history and that fact I have Lynch Syndrome they are relating this to colon cancer. My mother, grandfather and Aunt died from colon cancer.
I am will have upto 35 treatments every 6 weeks with a CT scan every 2 months. I just hope this is enough.
I was diagnosed too last September for the second time having had a tumour removed and chemo back in 2017. I have had immunotherapy and regular for 8 cycles finishing in Feb 2021. In April my cancer marker had started to creep back up so now in my first cycle of treatment again and side effects are hitting. I feel so tired most of the time and my face is so sore from the immunotherapy.....how are your side effects?
Hi stomaboy, thanks for sharing your story and sorry to hear you are struggling with Immunotherapy. What are you doing to control the symptoms? I have only just started Immunotherapy and heading for my 2nd session end of June. I had a few side effects, a bit of nausea, chest pain but managed to control this with anti sickness pills and codeine.
Thanks for reaching out to me and so sorry to hear about your husband. I wish your husband you all the best!
Immunotherapy is working incredibly well. I have it via IV every 6 weeks. I started in May 2021 and just had a ct scan and my cancer is now stable. So I will be continuing the same therapy. I have hardly any major side effects, a bit of nausea but an antisickness table helps. I am living life as normal and family and friends can't believe I have cancer because I look so well.
May I ask what cancer does he have and what is the drug called that the docs are putting him on. I am on Pembrolizumab for bowl cancer.
