Hi, I'm due to start treatment in the next couple of weeks. Saw the Gynaecology Oncologist on 01-04-21 and was told to wait and hear from the oncology team . Have a telephone consultation tomorrow and an outpatient appointment on the 28-04-21. When I start reading about the treatments I'm instantly terrified and don't read any further! Would anyone be able to share their honest experiences please? Any tips to make this any easier would be appreciated.
Hi, LadyMarie!
What stage did the doctors set? Other options other than chemoradiotherapy were not offered? What drugs will make chemistry? Chemistry therapy contributes to hair loss, intestinal problems (may be diarrhea or constipation), some have resolvable heart problems. You don't have to have all the side effects.
My doctor advised me to undergo gastroscopy and before the start of chemistry and during chemotherapy, I started taking the drug omez. They also advise you to change your diet. Take easily digestible food. At the same time, some products should raise hemoglobin (liver, walnuts, etc.)
Hey, when I first started I was absolutely terrified, chemotherapy made me a little bit tired and radiotherapy made me have a little bit of loose bowels. I was absolutely terrified of brachytherapy from the horror stories to the point where I almost declined it, and i actually found braccy the easiest part, I got myself in such a state when it came to removal of the rods I shut my eyes, and when it was done I was like is that it ?. It was absolutely fine and I felt like such a idiot. I've had more painful blood tests. Good luck on your journey.
Hi LadyMarie
Assuming you're having the ususal Cisplatin for your chemo then you shouldn't lose your hair - possibly a slight thinning but it'll come back; I had 6 sessions with Cisplatin and didn't lose any hair.
I did get nausea from the chemo but you will get anti-emetic medication; I was never actually sick and found certain foods helped to reduce the feeling of nausea - cheddar cheese in my case.
I found the external radio fairly hard going but it's doable; my main problem was a lot of diarrhoea and I was maxing out on immodium which helped a lot. Also, the external radio can make your skin sore and no doubt you will be advised about the need to moisturise regularly - I did as I was told and didn't get any skin problems at all.
As treatment progressed I lost my appetite and quite a bit of weight but a lovely dietitian was on hand and she prescribed me with nutritional high calorie drinks which made things easier; the aim is to keep your weight stable which I understood is to enable consistent positioning during the radio treatment The good thing was being given permission to eat whatever I liked (bearing mind that things like broccoli may cause bowel issues but you soon leant what to avoid) and whenever I liked so I had several weeks of guilt free eating - I certainly enjoyed quite a lot of icecream and other naughty things before my loss of appetite really kicked in during the second half of my treatment.
Because I had a radical hysterectomy before my chemo-radio I only had 2 short sessions of brachytherapy which is less than you get if chemo-radio is the first line treatment; I was dreading the brachy but in my case it was OK - the worst part was one of the nurses didn't have a great bedside manner lol!
Be kind to yourself; if there's ever a time to look after number 1 it's now. I felt very fatigued during my treatment - where possible rest when you feel the need.
Hope this helps a bit and that all goes well for you.
x
Hi, thank you for your reply. Your positive words have helped a lot . I think it's the fear of the unknown , honestly I started reading about brachytherapy and had to stop because it sounds horrendous. I have read a couple of positive posts on here in the last few hours. I know I've just got to get my big girl pants on and be brave ! To be honest it's been such a rollercoaster couple of months my emotions are all over the place. One minute I feel strong and the next I just want to run to the hills. Reading everyone's stories has inspired me . Hope you are now well and fully recovered. Please keep in touch ❤️❤️
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Hi, thank you for your reply. Yes I will be having the Cisplatin , the doctor had mentioned he doubted I'd lose my hair. I'm hopeful that during my telephone consultation today they will discuss the actual process . Do you go in the same time each day? How long does it take? What happens during the treatment, that kind of thing. What do I take with me ? Are we naked when we have the radiotherapy? Does it burn or sting ? There are so many scenarios going through my head. I'm the type of person that likes to be prepared lol . As for the weight loss, as I'm quite a bit overweight already I've been doing my best to lose weight since this nightmare started and have been eating healthy and managed to lose some weight. But I know that if the nausea kicks in I won't be able to eat and I'll lose a lot of weight anyway. So I hope this doesn't affect the positioning as you mentioned. My Gynaecology oncologist suggested the better option for me would be to kill the tumour with chemorads rather than RH. I have many allergies to opioids and have been haemorrhaging off and on for the last three months . I've been having blood transfusions and iron therapy for the anemia and unfortunately my blood count is still extremely low . There were concerns how they would mange my pain if I had the RH as a lot of the meds regularly given affect my heart . Also I'm likely to haemorrhage during surgery so chemorads seems to be the safer route. I feel a lot stronger today and I'm pleased I've plucked up the courage to join this forum and speak to you lovely people . ❤️❤️
Hi , thank you for your reply. I'm at stage 1B3 . Chemorads have been decided as my treatment as RH holds a lot more risks for me due to allergies to the drugs used in surgery and for pain. These affect my heart. I have haemorrhaged and have been given blood transfusions and iron therapy, but unfortunately I'm still anemic . So there is also the risk of catastrophic blood loss during surgery. We discussed both options at great lengths and he assures me chemorads will be as successful as having RH. I'm not too worried regarding side affects it's more the process itself. Also reading other experiences of brachytherapy I worry that I won't be able to have good pain relief as I can't have the opioids such as morphine as others have had ! Have you finished your treatment? Hope you are recovering well ❤️❤️
Hi. It's over 5 years since my treatment but when I was going through it, I posted a day by day account. If you type
Finally started treatment
In the search bar, my post should come up. I also did one about brachytherapy.
I've been told the posts have helped to reassure a lot of ladies xx
Hello, thank you so much. I have just finished reading your posts. Your honesty and openess have been amazing and so helpful. I am sure when I have bad days I'll read them over again. ❤️❤️
I am so so pleased to read this. You should be so proud of yourself for coming this far already, you are so much stronger then you think!
Also I didn't go under for my brachy, I opted for an epidural ans was awake during the whole procedure of inserting the applicator, as well as when it was taken out. I needed that sort of controll of the situation to be able to do it.
Hi, it's a mild sedative they give you and numb you from thr waist down. I'm sure you can ask about being an out patient.
No, not naked. I opted for dresses with leggings/tights so I could just wip them down/off but left my knickers on.
Rads don't sting or anything. I used the time to meditate and feel healing colours and I imagined where the flbcc (little and cancer are the only non swear words) was it being blasted. As for chemo days I saw them like a spa day and I was being super cleansed. I quite enjoyed the day as I was just looking after me, had a tea lady who also made me lunch and I also got to read or watch netflix... Oh and speak to people other than my husband and my 3 children. Had to make the day out the best where I could
They will tell you what your chemo day is when you've had your meeting about treatment. Radiotherapy is incredibly quick. Over and done with in about 5 mins!
Chemo days are longer so make sure you take snacks etc with you. You will get steroids to take and anti sickness meds which will be adjusted to suit your needs.
