Dostarlimab starting tomorrow

Hi Cathy B

Welcome to the Womb group. I hope that you will find it as informative and supportive as I have done. 

I understand that you want to feel fully informed and as you previously worked in the area I feel it is very natural. Its your body and you want to know how it will be affected. 

Here is a link to some Macmillan info on the immunotherapy medicine.

Dostarlimab (Jemperli®) | Macmillan Cancer Support

At the top of the page, next to the home button- there is a search feature so if you type in dostarlimab or immunotherapy then it will take you to previous posts of people who have had this treatment and then see how they found it.

I think, as you will understand yourself with the cancer treatments no one really knows exactly how they will effect you until you begin them. Everyone is different and the side effects can start at different times and come and go. I understand the feeling of being trapped with it- I had chemo in 2022 and then external beam radiotherapy and I still have Late effects from them both. I had different symptoms at different times and some have remained whereas others resolved quickly. 

I remember looking at the potential side effects of both treatments, as you have done with the dostarlimab, and they really do put every eventuality down- and that can be scary. However experienced you personally are in cancer care- it must feel different when you take away the professional distance and it is happening to you. I remember my consultant saying that they have to tell you everything so that you can make an informed choice about the treatments but she also likened it to the leaflet in a packet of paracetamol- everything is put down but you won't have them all. In the end I did have side effects with both but nowhere near all of them. 

The only advice I can give from my own experiences is to really get the back ground information so you know what may happen, look at other peoples experiences (from searching and posting on here) and then in a way to go with the flow. See what happens and if and when side effects occur speak to your team. I found a lot of my side effects could be addressed with medication and if not just talking to someone and getting some reassurance that what I was experiencing was normal. 

If talking things through would help then I can recommend the Support Line. The number is below and they are lovely on there.

I wish you the best with your treatment tomorrow and I hope that it all goes well for you. Please do ask if there is anything else you need.

Jane

Hello.

I am a patient who was given Dostarlimab. You can find more info in my profile. 

I'd be really interested to hear how you get on as although my treatment stopped, it s a possibility for future treatment should my tumour spread further.

I also have a friend who has been on Dostarlimab for sometime now and she is tolerating it well.

All the best for tomorrow, I hope all goes well with this treatment for you.

Shellie

Hi Shellie,

I have just read your bio. Like you, my cancer was discovered in lymph nodes which caused a blockage and I have a kidney stent too. Hope you don't mind me jumping on this chat but, I have been told I will always have the stent, I don't understand this, if the cancer in nodes reduces surely there is no need for the stent or is it kept in because of reocurrence? I think I need to be asking more questions when I go for my appointment! Anyway, nice reading your bio and seeing you are doing well. x

Thanks Jane. All your advicecis very helpful. Will be relieved when the first one  is over tomorrow!

Thanks Shellie. Its good to hear of you and your friend's experience 

I bet you will. That's how I felt with any new treatment. The first is the hardest as you are not sure what to expect. I hope it all goes ok- let us know how you get on.

Jane

I have had the stents changed 4 times now. It is done 6 monthly. I think its to avoid it blocking again. They are for life I'm told. 

Are you doing well yourself Hop5?

Will be thinking of you tomorrow Cathy B

That's kind of you. Had a call to say its not arrived in pharmacy today, so hopefully it will be later tomorrow rather than early morning. X

Hi Shellie69

Wow I just read your bio, you've been through a lot and yet coped so well, good on you, hope you continue to prosper . Can I please ask what grade and stage of cancer when first discovered?