Good news at last

Good morning lovely ladies, I just wanted to post this here for anyone else who was/is searching for answers and driving themselves nuts like I was, about what happens next after a severe allergic reaction to Paclitaxel. Don't give up hope!

A short summary of what's happened to me:

Debulking op: 20th March 2017

Diagnosed OC Stage 3a with grade 3 cells: 30th March 2017

Chemo started: 11th May 2017

I was due to have the usual Carboplatin / Paclitaxel combination, but had a severe anaphylactic reaction to the Paclitaxel within the first minute of infusion, so it was stopped. Due to this it was then decided that it was unsafe for me to try it again, so cycles 2, 3 and 4 went ahead with Carboplatin only. Pre op my CA125 was 2380, when I started chemo my CA125 was 151, but during cycles 2, 3 and 4 it gradually increased each time till it was 200. For cycle 5 my oncologist decided to try a sister drug to Paclitaxel called Taxotere in addition to the Carboplatin. Unfortunately I also had a severe anaphylactic reaction to this within the first 5 minutes, so it had to be stopped again and I had just Carboplatin once more. After that one my CA125 went up to 234. For cycle 6, my oncologist decided to do a desensitisation /desensitization process where they put in small amounts of the drug at a time and manage any small reactions as they go along, I agreed to go ahead and we tried it at the end of August - it went in!!! They managed to get my body to accept it doing it this way! 6 months from my operation, 6 cycles of chemotherapy and two anaphylactic reaction later, but with perseverance on both my oncologists and my part, it happened.

The last few weeks have been a bit grim in terms of side affects, but yesterday was the day to go and find out the results of blood tests to see if it's all been worth it - IT WAS!!! CA125 down from 234 to 132. We (me and hubby) are absolutely delighted and I just wanted to share the fact that there is hope for anyone going through the same.

Much love

Paula xx

35 Replies

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  • Ah that's great Paula!

    I was severely allergic to paclitaxel, but tolerated taxotere OK. Glad they found a solution for you.

  • Thank you Yoshbosh, I was beginning to think it'd never happen! Thank goodness for Taxotere xx

  • Fantastic Paula! Well done for sticking with it xx

  • Thank you Lyndy xx

  • That's great news x

  • Thank you Ossett xx

  • Wow Paula!! Well done for persevering.......you obviously have a very determined streak; extremely valuable when going through what we face. Glad to hear things are going in the right direction. Eleni x

  • Thank you Eleni, I take after my mum in that respect, she lost her battle to multiple myeloma in 2015, but boy was she strong and determined, I'm not quite as strong as she was always, but I do have some of her determination in me thankfully xx

  • Well done that's great news . Love and best wishes Kim x

  • Thank you Kim, next lot due tomorrow! xx

  • I was on taxatere also And my psa went from over 2200 to less then 3 in 4 months. They only reason I was stopped on it was because I started to have some reactions on the bottom of my feet. I was told it was some strong chemo. It worked good but plays hell on the body and limits what you are allowed to do. If you have any questions I will be glad to try to answer them.

  • Thank you Chewy, that is brilliant results with your CA125 and gives me even greater hope, thank you. I have to agree, the symptoms have been pretty grim, but knowing that something is finally working will help me immensely now. I had my second lot of it yesterday, which all went in again and I just wanted to answer before I plummet again, thank you for saying you will answer questions if you can and when I resurface I may well do that xxx

  • Hi Paula , Good news is always good to hear, hope the rest of the treatment goes well ..Lorraine xx

  • Thank you Lorraine xx

  • Fantastic!! So pleased for you. 😊 Solange xx

  • Thank you Solange xx

  • Paula I too had a severe reaction (carboplatin) and have had the desensitised regime ever since. It's a long time in the chemo suite but worth it. There's a way round stuff if you have a willing and positive onc. I'm glad to read this.

    My CA125 went up to 2885 in recurrence then down during treatment to 868 and 6 weeks break for my fab hols in the US - went down during that(!) to 808. Testing it today in clinic so will see what it is after 3 more weeks... then three ore lots of 3 weeks on one off....

    take care and enjoy yourselves!

    Netti xx

  • Thank you Netti, as you say it takes a loooooong time, but it is definitely worth it and great to know that there are ways around things.

    That's great results for you with your CA125 and fantastic that it went down during your hols!! We love to travel too, it's food for the soul!

    Good luck with your next results xx

  • Netti, I hadn't realised before that you aren't actually from the USA, I've just read some of your previous posts - which insurance company did you manage to your travel insurance through for USA travel? xx

  • It was All Clear Insurance. Not cheap but peace of mind for everyone.

    Take care. Netti xx

  • Thank you Netti, I've noted that down xx

  • Great news Paula! This illness certainly challenges your inner strength and resilience! Hope the side effects will settle down soon and you can start to enjoy life again. xx

  • Thank you JoJo, it has definitely been a challenge and I'm so glad the turning point has finally come, it's done wonders psychologically and will help me immensely when I plummet tomorrow and over the next week or so xx

  • That is so good to hear. Well done on persevering. I had a severe reaction to paclitaxel last week and am being admitted to the oncology ward tomorrow so they can try again. I am a bit worried but your post has calmed me down! Thank you and good luck.

  • Thank you Melongirl, I managed to have my second lot yesterday on the desensitisation process again with no problems, so it can happen. I have all my fingers and toes crossed for you that it works for you today, good luck xx

  • You have certainly been through the wringer Paula. Thanks for sharing your positive news - well done your persistence has paid off, best wishes Dawn

  • Thank you Dawn, it all seems worth it now we're seeing positive results xx

  • I had anaphylaxis to Taxol too..my 3rd round..and then had taxotere with Carboplatin for 8 more rounds until I reacted to Carboplatin..then switched to Cisplatin with Taxotere for 3 rounds..taxotere didn't bother me at all ..praying you'll do well with it too!

    Lynne

  • Thank you, the Taxotere has been a bit difficult in terms of side affects for me, but the first cycle worked, so I can live with it. Had the second cycle 21st Sept and will find out 10th Oct if my CA125 has come down again - fingers crossed it will have! xx

  • This is happening to me right now no one has mentioned desensitisation??

    Which hospital are u ?

    Xx

  • Hi Zena, I'm at Northampton. Sorry for the delay in answering - chemo knocks me for 6, only just coming back up. Just received your private message and will answer in a mo xx

  • Well Paula, you have done great hope you and hubby do something nice to celebrate, all the best

  • Thank you Suzuki, we had a lovely celebration meal. We're saving our main celebration for when I finish chemo, hopefully only a few more to go now! xx

  • Hi Paula - so glad you've made it through treatment. I am also allergic to paclitaxel and ended up having it over 24 hours which was a test of patience but I'm glad I was still able to have it.

    I hope your side effects improve soon so that you can celebrate.

    Andrea xx

  • Thank you Andrea, mine takes all day to go in, so a long haul as well, but when you know it's working everything becomes tolerable and more manageable. Hopefully only a few more to go for me now xx

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