Has anyone else been offered or undergoing immunotherapy treatment?
I was started on Dostarlimab, a newly approved treatment for progressive endometrial cancer. My cancer is in some of my pelvic lymph nodes, which were not removed last year with my hysterectomy.
Unfortunately, even after the op, and 5 weeks of radiotherapy and 3 of bracheytherapy my cancer is still progressive..
I managed two treatments of immunotherapy, then ended up in Hospital with Dostarlimab nephritis. Kidney failiure. It was scary. I had a buildup of toxins that couldn't drain, causing terrible confusion.
I have had stents fitted to drain my kidneys. These have to be replaced every 6 months...
I have been treated with high dose steroids, starting with 160mg Prednisolone for 5 days, reducing every 3 days. Finished today. Thankfully my kidney function is back to normal range, but it needs to stay that way...so am now being monitored with blood tests weekly, for now, then fortnightly if things continue well.
So now treatment has stopped and I have to wait for another ct scan, due in July. It doesn't look like I will be going back on it unless major developments show up, with the tumour. And then it will be along with further steroids.
One positive with this treatment is it is different to chemo in that it continues to work when in your system. So I am hoping that it is positive.
So far I am doing ok, some numbness around my groin and inner thigh, fatigue, and slight back pain but pain levels are managable and I have built myself up to fairly good daily routines. I just have to keep going. Keep positive.
I'd be interested in anyone else's experiences.
Shellie69
Hi Shellie69. I'm not suitable for Dostarlimab so I was interested in your post. My cancer metastasised after 9 months and I've just finished 6 cycles of chemo. CT scan at the end of May booked for 25th May. Hopefully there'll be further regression since scan after cycle 3.
Sorry to hear it hasn't gone too well with you ending up with kidney failure but your kidney function is now ok. I'm not aware of any other ladies having had this treatment here as it's such new treatment.
May I ask what stage and grade were you?
Hugs, Barb xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
BTW I've asked for your other duplicate posts to be removed.
Barb xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hello Shellie
yes - please do look into it 
mum Is doing well touchwood Her latest scan has come up clear so we are praying hard that things stay that way
in terms of side effects mum gets joint pain and pins and needles but she says it’s a very small price to pay if it keeps the nasty cells at bay…and she’s jjust “getting on with things”…. Mums incredibly proud and head strong and tries to soldier on as best she can .. he get told off if we make any kind of fuss…
please do look into it I’m very happy to share the consultant details with you
xxx keep smiling and soldiering on xxxx
Hello Shellie
hope you well x
mum started chemo a year ago. 6 cycles and they gave mum the trial drug at the same time… chemo finished end of July and mum has continued on the trial drug x
yes - mum had the nasties in her pelvic lymph nodes and para ortic lymph nodes… thankfully the chemo and now immunotherapy are giving it a good bashing …
so far mum seems to be ok with the immunotherapy…
I think you should definitely look into Atezolizumab as a possibility xx happy to share more details
lots of love and good wishes xx 
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