Hi guys
just wondering if anyone can offer any advice. I had my
PET scan this week. They said the results showed no sign of cancer in liver or lungs but that is did show that it is quite high up at the back of my stomach near paraortic lymnode.
she said that they need to try and get at this quickly to stop the spread so have said I will need extra chemo of taxol before I can start my original treatment plan we discussed. Said that will need one round of taxol next wed- wait three weeks and have another round of taxol. Then wait 10 days and then start the radiotherapy etc. I think the weekly chemo of cispatlon would then be the case during the radio.
just wondered if this has happened anyone else? I'm absolutely petrified of taxol :( and I know it sounds silly but the hair loss is just another thing to deal
with now which is making me really sad :(
sorry if I sound really negative lol I was so positive and looking forward to starting the radiotherapy next week as still bleeding so this just feels like another set back.
xxxxxx
So sorry base, I know I've seen people on here that have had to do this as well and hope they respond.if you're still bleeding try taking a iron supplement so you don't become too fatigue . I know your treatment wasn't what you were expecting or hoped for but it's good they're being thorough and not taking any chances.do not apologize for thinking you sound negative, u don't at all, you must be going through a lot right now. If you need someone to talk to or need to vent feel free to.
Hi. I'm sorry that your treatment plan has had to change- must be so frustrating. There are ladies that this has happened to, their stories are in the private forum. I'm sure you will be accepted for this group. It's usually for ladies who are stage 4 but as your treatment is similar to what they have been through, you will get some great advice there x
Thank you ladies - just feel so disappointed now because I had just got my head round everything else and now this has changed and it feels like a really big change :( xxxx
Hey lovely,
I am so sorry that your plan has changed but try to view it as giving you the best possible chance of cure and they want to make sure that they blast all the cancer away. It's always difficult to get your head around one thing then have it all to change. No matter what you've got this and I'm sorry I can't help as I didn't have this treatment. I really hope that you find some ladies who have experienced this and that you feel less anxious.
massive hugs and loads of love xx
Thank you so much for your lovely message emmz13, I really appreciate it :) In a strange way I'm excited to get started on treatment so I can feel like I am on my way to getting rid of this lol have a lovely weekend hun xxxx
I remember feeling that way to lol
thank you sweetheart, I hope you have a lovely weekend too.
much love, emma xx
Hello Base,
I also had the chemo cocktail (carboplatin and taxol) prior to chemorads, for the same reason as you - mine had started to spread and they wanted to slow it down.
I actually found the cocktail part of the treatment a little easier than the chemorads, but I need to stress that everyone handles the treatments differently. I had some side effects from the cocktail (loss of appetite, metallic taste in mouth, fatigue and muscle pain) but these only lasted a few days then I had the remainder of the 3 weeks to recover. The hardest part for me was the hair loss - I just couldn't accept it or be okay with it, while at the same time I greatly admired the women around me who just owned it!
Many women fly through the chemorads without any problems, but I wasn't one of them. I felt nauseous from day one and didn't feel any better throughout the following 6 weeks. I don't say that to scare you, but rather to let you know that if you are one of the unfortunate ones like me, you can get through it. Once the treatment was over, I started feeling better and stronger within a week. My doctor felt that it may have been a little harder on me because my body had already taken a hit with the cocktail, but I can also say that my tumor, which started to at 10 cm long, was visibly gone by the 4th week of the chemorads. My initial PET scan done at diagnosis looked like a "Christmas tree", and my PET scan done 3 months after treatment finished was completely clear.
As scary as it all was, I also felt a sense of relief once treatment started - I think a lot of ladies do. If I could give you any advice, let people help you. Rest when you are tired - even if that means being a couch potato every day. If the household chores don't get done, too bad. Try to get a bit of exercise and remember to stay hydrated. And communicate with your team about any side effects that you have - they really are there to help you as much as they can.
Best of luck to you. You can do this!
Thank you so much for your message Daisy33. It's nice to hear from someone with a similar treatment plan. I was devastated when they changed it :( I know they are doing it with my best interests in mind but I just can't get passed the hair thing :( my appointment with chemo nurse is tomorrow at 9 and chemo is on wed morning at 8am, getting nervous now xxxx
Good luck with your first chemo lovely, hope it all goes well, I'll be thinking of you xx
Hello I’ve just had my 2nd chemo cocktail it’s knocked me about this time, no appetite stomach ache and feel so sick and tired, do the symptoms build up and get worse with every treatment, not looking forward to it, the hair loss has been a major thing for me but it’s all for the better good hopefully xx
Hi Dawnann62, I’m so sorry your in this boat too. I found the chemo cocktail very difficult being honest. It really knocked my appetite and I wasn’t able to get out of bed at all. But just keep telling yourself it is only temporary. My hair is down to a bob now from last November and that’s with it being cut a few times. It will fly back I promise you 
If you have any side effects please make a note of them and let your team know as there is definitely a lot they can do to help and manage things. Do you know how many of the cocktail you are having? Are you doing chemo rads after? sending you lots of love and positivity 
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Hi Pickles,
Not really part of this conversation but I follow lots of stories and just sending good wishes to you and hoping you’re all clear now after your treatment! The bob sounds lovely and it’s so reassuring for other ladies to know how quickly the hair comes back. I hated having no pubes after the brachy, but when they started to grow back (took a few weeks) they came quickly and are now a nicer colour than before! (Maybe TMI). So lovely to hear from you. Xxx
Dawnann,
Hold on in there. It can get pretty grim but the good thing is that they will monitor you for any serious reactions and if there’s a problem deal with it. The nausea, tinnitus, weakness (if you get it) are horrible but they are transient - you will get strong again, you’ll have a good head of hair (and in other places) and you can get this! 
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Hi thank you for replying, I’ve got 6 chemo cocktails not sure about chemo/rads they havnt discussed that far, my cancer had spread so need the whole body treating first, the tumor or pushing on the bladder and the back passage, lymph nodes involved a few spores in the abdomen and a question mark on the liver, I have been staged at 4, one hell of a shock as I had no symptoms until the end of august with what I thought was a water infection, glad your doing so well it gives us all how to read these positive messages xx
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I’m sure they have an amazing plan in place for you Dawnann62 The chemo cocktail really is something. I had very bad pain which came on suddenly after being diagnosed and was taking 12ish strong painkillers each day to get by. They were really strong pain killers from the Gp, short tech and long tech. When I had my first chemo cocktail I didn’t need them anymore. The next morning after the chemo cocktail the pain was gone. I know it’s hard now but I promise you that you will look back on this and be very proud of how you got through it. I hope your appetite is ok with the cocktail, that’s something I struggled with. Don’t be afraid to mention it if that’s the case as the dieticians are great and can help in many ways. Sending you lots of love 
Thank you so much for your reassurance it really means a lot, my appetite is a little better today xx
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I’m glad to hear your appetite is a bit better today, it will keep your strength up. My oncologist told me to eat whatever I wanted, when I wanted. Said as long as I was getting food into me that it was ok with her 
I think that’s pretty sound advice haha keep in touch Dawnann62 xxx
Thanks for your lovely message, I’m doing ok thanks, I was NED at my post
I had a ct at the start of the month and an mri there on 23rd Dec. They said my ct scan look grand. They said they always like to do an mri aswell to have full up to date imaging so hopefully it will be ok too. They said the mris are the best way to look at the pelvic area. I requested some scans at my last review as I like the reassurance of being checked, the mental side is very difficult. I’m a now crazy lol Never worry about TMI on here… we are all in a different league after brachy 
hope you are doing good? Hope you enjoyed Christmas 
Xxxxx
