Reoccurrence of womb cancer started immunotherapy

Hi FIfik

My story is on my profile which I update tegurlaly my journey started in October 2021 a smalll amount of pink discharge and within 2 weeks is been diagnosed with womb cancer which the gynaecologist said could feel and c tumours and it was bad thought that was it for me but she said it was treatable and those words are what has kept me going the first hurdle was a CT scan to c where it had started from then the bombshell it had spread worse than they thought pelvis under breastbone in lungs well I thought that was it but they said I could be treated and that was all I’ve ever need to hear, chemo first lost my hair that didn’t bother me had. Beautiful wig the compliments I had were amazing the chemo shrunk things but not for long it was back with a vengeance I was also allergic. To the chemo which they sorted out giving me slower with hydrocortisone, I had to have blood Twice and ended up with neutropenia sepsis my blood cells had gone to 0.01 was in hospital on IV antibiotics for 5 days 4 hours waiting for ambulance I collapsed in the showe4 then was in ambulance for 8 hours before I had a bed but got over that left me very weak and fatigued next step they said I couldn’t have iimmunotherapy but they would try hormone replacement which is what I’m on now then it ilfitrated my bladder back  in hospital again had to have catheter fitted which was unsuccessful 3 weeks later  trial without I hate it but it’s a necessity thought I was having urine infections but I wasn’t emptying my bladder properly they drained 2 litres before it settled down, my consultant referred me to Christie’s in Manchester for second opinion and any trials that’s p,ace is amazing saw a new consultant she said there wasn’t any trials and as idconly just started on the hormone treatment tablets to carry on with those been on them for about 7 weeks and she said I could have radiotherapy for my womb if the bleeding gets too bad and they can do something with my bladder if it gets blocked but that’s been running fine up to now but I’m still discharging and bleeding so not sure whether they are working my cancer is FIGO stage 4 b thought that was it then 3 weeks ago I had a seizure ended up back in hospital it has mataasized to my brain and I start radiotherapy on the 30 Sept got to go to Glan Clwyd for an MRI and a mould fitting theyvthink there might be a small lesion on the other side which they can operate in Walton Liverpool but it could be a blood vessel but will find out Fri so that’s the next step Walton will be looking at the MRI so fingers crossed it’s just a blood vessel but knowing my luck I’m prepared for the worst I’m feeling quite well in myaekf on steroids and epilepsy meds which the steroids keep me awake get about 5 hours sleep and like now wide awake, I’m here ready for the next battle and as long as they can treat me that’s all the words I need to know I am a strong woman have 3 children 2 who have weddings Nov 3rd my youngest son  he’s 34 and my daughter DEc  20th for the 3rd time it’s so hard for them but they have all been amazing and this has  all closer together my husband is suffering watching me as sometimes I’m a blubbering wreck my friends have been amazing really keeping me going I’ve got an army of family and friends ready to rake me for radiotherapy as that will be 5 days a week for 3 weeks if I can give any advice just take each day as it comes be m8 d to yrsekf and keep fighting all the way as long as there is treatment that’s all we need to know.

hopevthings work out for you Fifix I’m here to talk anytime have a look at my profile and start yr own if you can just go on profilrpe a day edit then save it does help as it remind a you what steps you have been through to get to yr journey.

king rehards

 Mo K xxxxx

Hi FifiK and welcome to the Online Community. 

May I ask what Immunotherapy treatment are you receiving? I myself am just about to start Pembrolizumab and Lenvatinib on Monday 3rd October.

I had my hysterectomy in September 2020 followed by 3 Brachytherapy. Less than a year later it metastasized with lesions on liver and spleen, masses in peritoneum, pelvis, omentum and vaginal cuff. 6 sessions of chemo thought I'd cracked with no discernible deposits for the time being. Finished chemo in March, by July problems coming back and CT scan showed further mets in Liver and Lungs - so this is a last chance saloon for me as it were!

To be told you're incurable is such a shock, you think you've kicked the cancer into touch but the little bugger pops up all over again. No-one except us who have cancer knows what it feels like, even with the best will in the world. It consumes your thoughts from the moment you get up. You know you're no alone in this we're here to support you and as Mo K mentioned it's good to fill your profile as then we know how you find yourself here.

Sending hugs, Barb xx

Hi, thanks for getting in touch with me. It has been lovely to realise I’m not on my own. I am on dostarlimab, so far I’ve had one session and am due to have my next one tomorrow. I too had a radical hysterectomy, followed by chemo, radiotherapy and brachytherapy. I had hoped that would sort everything out but as you said the” little bugger” has popped up again. You are right this consumes every thought every day. I try to stay as positive as I can and just take each day and try to not think too much of the future. My husband doesn’t really know how to cope with this either so that can be difficult at times. Thanks so much for your support. I will fill in my profile and I really hope your treatment goes well. Stay strong xx

Hi thanks so much for responding to my post. Gosh you have really been through it and  you seem to have such a great attitude to everything. I’m trying to be positive too and to take whatever they can throw at me. At times I feel stupid for not going to my GP sooner as this may have made a difference but what’s done is done and I can’t turn back the clock. I hope that more women get the info they need early so they can respond to things that happen as menopause hits. I wish you all the best and I’m so grateful for this community as I can see it will be very supportive. I’ll fill in my profile too. Take care xx

Hi FifiK. I'd never used social media before and Macmillan was my lifeline. My hubby of 42 basically stuck his head in the sand as he didn't know what to say to help me but the ladies here held my hand and have helped me all the way. We all know where "you're coming from"

Might I also suggest you join me in the Living with incurable cancer - patients only forum. There's a huge amount of support and a lot of laughter as we seem often to share a very dark humour!

Hugs, Barb xx

Correction: Hubby of 42 years, not aged 42. Hmm he'd defo be my toy-boy as I'm 69 LOL!

Bxx

Thanks I think men are programmed to stick their head in the sand! Loved your correction to hubby’s age. I’m 57 and have often wondered what ii would be like to have a toy boy! I will also look at the other forum you suggested. I feel so much better already having made this connection with you on the forum. You have helped to lighten my day, thank you. F xx

Hi… I know this is an old post, but I’m about too start Dostarlimab. Can I ask how you are getting on with it?