Just wanted to share this as a boost for anyone going through chemorad / chemo who is unlucky enough to be feeling all the side effects. Please don’t get scared reading this - this is not a normal experience! But I share it to say - no matter how bad it is, it IS worth it and you WILL get through it.
I’m not going to lie, chemorad was the worst 5 weeks of my life. I’m a pretty strong and positive person but the first 2 weeks I was in agony, constant sickness with throwing up multiple times a day, continuous fever cycles with no clear cause, no strength to move, extreme unexplainable hip pain, bowel changes and generally no part of my body feeling like me. I lost 4 kg in a fortnight (unfortunately that came back again fairly quickly after treatment stopped!!) and would lie in bed wishing for a painless death in my sleep so it would all end. I begged my husband and parents to let me stop but they stubbornly dragged me into the car each day. In the second week I went to the hospital but my oncologist decided I should skip a day of radiotherapy and my 2nd out of 5 Cisplatin doses to give me space to recover. That plus finally cracking the right antiemetic dose made things slightly better and I survived the next 3 weeks. I am very fortunate to have family with flexible work commitments so they could be around to help constantly which made things immeasurably easier.
The thing is - it was definitely worth it. The PET scan 3 weeks later showed a near complete response to treatment so far. The day after the scan we took a mini holiday to celebrate and it was amazing to realise how quickly I was recovering - strength, appetite, and most importantly sense of self.
I’m now starting 6 cycles of carboplatin/paclitaxel/bevacizumab. The first day was yesterday and despite a few tears when the nurse talked me through the scalp cooloing, so far so good. Even if it gets worse I know I will be able to get through it and it WILL be worth it!!
To anyone else going through a challenging time right now, sending you good wishes and positive vibes xx
Best of luck for your new rounds of treatment. Glad to hear you got through it. I think we may be a similar age based on ur username ive just turned 35 last week. I’m due to start my treatment on 3rd Jan. I had my planning scan today and got all my dates, for radio and brachytherapy so just waiting on chemo dates which I already know is the Monday. The oncologist has said I will be wiped out but just need to wait and see. Hope you can enjoy ur break between treatment xx
Happy belated birthday! Mine is coming up in a couple of weeks, I’ll be turning 34. Here’s to us getting through this and celebrating for another 35+ years Hope your treatment goes well, how are you feeling about everything? Good luck with it, hope you enjoy a nice festive break before it kicks off xx
What a positive message!
Steffi and newuser, I really wish you all the best with your treatment!! I am in a similar group age and I was diagnosed last year with 2B CC so I went thought the chemo/ rads and brachy treatment! It is a tough journey but you can do it! Lots of Love xxx
Happy Birthday when it comes. I’m feeling better now that my dates are through but before that I was a mess, I’m known to be a bit of a control freak so that wasn’t suprising to me. Just felt like I had 0 control and was reliant on others which I also hate, i am very independent lol. Just a sore back and the bleeding is annoying but other than that I will get there. How are u? Xx
Hi Steffi, I’m glad you already have your start date. I’m 37. I was also such a mess and still having those days since I was diagnosed I’m gonna be on my week 6 of my treatments as my radiologist oncologist decided to do 28 external radiation instead of 25 then I’ll have a 2 week break before my brachytherapy, seems a bit different from everyone here as they have their brachy along w external. I’m from the US by the way. But I’m excited to have a lil break to recover. The treatment is not easy and you’ll have side effects here and there and everyone reacts differently but you can do it! Just take each day at a time. Just wanna send you some love, good vibes and prayers.xx
Thank you for posting this. It’s really hard to stay positive and just the fear of being diagnosed w cancer is already overwhelming. Then when you start treatment you feel all the aches and pains that comes along w it and sometimes you just wanna give up. But then you realized you’re stronger than you think. Tho I don’t know you personally, I’m really proud of you finishing your first round of treatments. If you don’t mind me asking why do you have 2nd round of chemo after chemorads? What stage were you diagnosed? Sorry for the question I’m just wondering if hospitals or doctors have different preferences in treatments approach. Sending you strength and much love.xx
Thank you May17 for the good wishes. Sorry I’ve realised I didn’t put any diagnostic detail / explanation of treatment in my intial post. The treatment right now is for a recurrence that they found in my para-aortic lymph nodes at my 6 month scan post-trachelectomy. The recurrence came as a bit of a shock as all the tissue extracted at the surgery in January showed NED, just a bit of bad luck that some microscopic cells had already moved further up my lymph node chain before the surgery. My oncologist advised that she coud treat what they could see in those nodes with 25 sessions of radiation plus weekly Cisplatin, but there was still a high risk of further microscopic spread as the nodes they could see where already quite far up my body and quite bulky (part of why the radiation was so intense for me - it was an extensive area being covered beyond my pelvis too). So I’m now having 6 cycles of chemo with Carboplatin/Paclitaxel/Bevacizumab in the hope that this will get rid of any microscopic cells that may have made their way elsewhere. So far it’s going much better than the chemorad - no sickness, just bad leg pain and some other aches.
Hope you are feeling as well as you can be and that you get a good chance to rest and recuperate time in the break before the Brachy starts. You’ve got this! xxx
Thank you! Looking forward to it and Christmas generally Glad you’re feeling better about the treatment to come, sorry the symptoms are still a pain. Generally with this situation it is tough accepting how much control we lose over our lives - in the short term whilst we are treating it, yes, but even in the longer term where we’re on slightly different paths to what we might have imagined. It’s worth it to be able to fight for our future but I’ve definitely learned a lot about letting go this past year! In fact with the treatment this time around (the cancer recurred 6 months after a trachelectomy) I actually felt some relief that I didn’t have a choice and just had to nod and get on with it, I just focused on the bits that were in my hands like time with family, friends, work, food, yoga etc. Hope there’s something like that for you / things that keep your sense of self at the forefront xx
Thank you, ive just posted on another thread but I’ve just received a letter from my hospital saying my chemo will start on the 20th Dec which I thought would start the 3rd when I start radiotherapy too. No idea if this is an error or that and I can’t get anyone in the department as it’s the Macmillan day clinic I need to speak too. Anyone had anything similar? Xx
Aw you’ve been through so much but I’m really happy that your body has been responding well to these treatments and I’ll be praying for the best results once you finished these rounds of chemo. The fear of spread and recurrence already hunting me altho I’m still on my first phase of treatments. They did a laparoscopic surgery prior to my treatments to get some sample lymph nodes and said they were clear but I’m still staged at 3b cuz my left ureter was being blocked by my tumour. So when they said I’ll have the 2 week break my thoughts and fears of it spreading is unreal. They say cc is slow growing but for some it doesn’t seem to be the case. You’re such an inspiration, please keep us posted. Sending you hugs and prayers.xx
Hi Steff, the rads and chemo needs to start the same week. Probably it is an administration error from chemo or rads department. I did my treatment in UK and I had similar issues which I had to ring the hospital. If you have no luck with the chemo department maybe to try to ring the radiotherapy department in your hospital and try to move the rads on 20th Dec?
I have called and left a msg with my nurse so hopefully it can be sorted quickly. I couldn’t get through as it was a Saturday but hoping to get them tomorrow morning. Xx
Hi @Steffi86 hope you managed to sort things? Good luck with it, thinking of you xxx
Thank you. Sending you best wishes and hard as it is to stop worrying (scan-xiety is real!!) the fact that they know it is there and are treating you with curative intent puts you in the best positon possible, regardless of a few weeks break xxx
You’re right, just need to focus on the good no matter how hard it may seems. It’s great to have support from you ladies here when I’m finding myself stuck w my own thoughts. Thank you for graciously being there while fighting your own battle. I’m glad these round of treatments are easier for you. You’ve been through worst and you’re a perfect example showing us that we are all stronger than we think. So thank you. Please keep us all posted. Lots of hugs.xx
Hi Steffi, I hope you were able to sort things out and no matter what I’m glad you have your treatment plan and date in hand that you can finally feel you’re doing something to get rid of this disease. We’re all rooting for you! Xx
Thank you everyone. I’ve been away for a few days with the kids to Lapland UK we loved it but it’s basically a full day to drive down and another to get home so tiring. But home now and glad to be getting into my own bed. The dates were wrong and now starting chemo on same day as radio which is 3rd Jan so assuming the day to show me round will be Hogmanay. I’ve also just had a pre assessment appt for 28th jan, before I go in for brachytherapy. Sat and wrote down all the appts in my diary today so I don’t get mixed up. How are you all doing? Xx
Hi, how are yous all getting on? Hope you all managed to enjoy Christmas and Boxing Day. Xx
Great to hear you enjoyed Lapland and you got your appointments sorted out, not long to go now.
I was terrified on my first day but thankfully it passed without any issues and I was absolutely fine. I’m sure you’ll be the same.
Had a lovely Xmas ate and drunk my body weight in food and drink as usual. Out for a meal tonight so not finished yet . Will need to go on a strict diet in the new year as unlike some I actually put on weight during treatment!!
Wishing you a happy and healthy new year xx