Hi Kdon24, Welcome, I’m glad you made it over to this group. We have already spoken that I’m on Pembrolizumab and #44 will be on Friday. When I started Pembro the fact that Jimmy Carter (Ex US President) was in the paper for being no evidence of disease having been on Pembro was a big boost for me.
If there are any links to info I can help with or experience I can give I’m here to help like others here.
Hi I am also on immunotherapy Nivolumab for melanoma in or near spine,lung and near kidney Read my profile for details.Just to let you know I am well and have had 20 treatments initially every 2 weeks and now every 4 .My tumours are shrinking and it’s just as well as one was 11cm in length .I have very little side effects like a slight rash and itchiness .I am tired after the infusion that night and maybe a day or so after. I try to walk as much as possible .I eat well and perhaps too well as I have recently but on a lot of weight. l did however lose about 12 kilograms when I was ill before being diagnosed .
I try to remain as positive as I can but at times it does hit me and it’s usually waiting for my scan results.At the moment I am waiting for results and had scan on 4th Dec .However I think no news is good news so just have to get on with it.
I sometimes have trouble when they insert the cannula as my veins are thin but was given the advise to keep my hands warm with gloves on the way to hospital and also to drink plenty of fluid. It can be frustrating waiting for treatment especially if I see the consultant beforehand as then have to wait for treatment to be made.I take my iPad and book with me to pass the time.
I hope all goes well for you and let people know how you are getting on.I have had fantastic advise and reassurance from this forum.Take care
I’m on Pembrolizumab. I started in June with infusions every 3 weeks and now I’m having a double dose every 6 weeks instead - which still comes round remarkably quickly! About to have my 8th cycle on Thursday. I’ve been absolutely fine so far with nothing to report except a bit of dry mouth. I go back to work after my infusions, so doing great. It’s adjuvant therapy for me after a full groin dissection, so there isn’t anything there to help measure progress as such, but nothing new has appeared - which is all good!
As you know this is a rollercoater of emotions for everyone and I'm concentrating on the positives. I met my Oncologist today, and he confirmed that I will start my Pembrolizumab treatment in the next 2-3 weeks once my Gastro gives me the green light for my Ulcerative Colitis, which Ive been managing for 20 years.
The support from family, friends and colleagues has been amazing and has helped me to focus on the positives and these forums are an ideal way to connect with other people.
PS have you looked into travel insurance since you were diagnosed?
Talk about a rollercoaster - I’m mostly fine, but spent a good 90mins sobbing tonight for various unimportant reasons! So yes a rollercoaster is very apt!
I have got travel insurance a couple of times, just for within Europe. I went with Boots - it was really easy to answer all the questions they wanted and the price was actually really reasonable. I think there’s a whole thread on here for travel insurance too if you need it. X
Thanks so much for the reply. The waiting and not knowing is awful and Im trying not to get paranoid about every ache and twinge. Luckily I have had numerous Canulas over the past 20 years, and as long as its not a junior doctor in their first week, they usually get it right.
I found out today that I start Premiluzimab in a few weeks time and my tumors are currently quite small, so feeling more positive than I did last month when I was diagnosed.
I find walking a great way to get fit and clear my mind, with a bit of Rock music and the diet/alcohol consumption has changed.
