No more Carbo for me, what next?

Good evening ladies! I have been on the Carbo/Gem regime and had a reaction to the Carbo on my 2nd infusion so they put me on the de sensitise programme and I managed number 3. Was all hooked up Monday had the Gem no problem had my first hour and half of Carbo then the second half and hour of Carbo and then on the third I got the reaction again, its not nice to say the least. So no I am back in no mans land, I need a new plan of attack I have a scan on Monday 31st and appointment with the onc 14th November to review and sort out what we are going to do. The waiting and scan anxiety is bad enough but by the time I get the results a plan is put in place and a chair available for my treatment I will be 8 weeks without treatment and I will probably back to the stage I started 2nd line chemo in August. its like one step forward and two back with the monster of a disease! Has anyone else had this happen to them!

11 Replies

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  • Hi Alison,

    I've not had this happen to me but just wanted to send hugs and wish you well for your ct scan results. I'm sure some ladies will be along with their experience to help.

    Mandy, xx

  • Thanks Mandy xx

  • Hi Alison. Im struggling to understand why you will be without treatment for 8 weeks. I reacted badly to Carboplatin in the form of a grade 3 anaphalactic shock, out cold for about an hour and had 14 shots of adrenaline. kept overnight in hospital but the following week swapped carbo/gem for cisplatin/gem, which is harsher to tolerate but totally doable. I do hope you get your chemo sorted. Take care, Kathy xx

  • Hi Kathy omg you really are made of tough stuff I do so admire you love your posts! My onc wants to see a scan before he decides on next course of action so I got my 8 weeks because not now had full chemo for three weeks and it's a further three weeks to review my scan results then will take a week or so to be re booked in! When they switched you to cisplatin gem did you have a further 6 rounds?

    Thanks for replying xx

  • Hi Alison. Yeah I think I must be a tough old bird lol. No I didnt have a further 6 rounds just carried on from the previous rounds so basically the first was carbo/gem, the second I reacted within 2 mins of the carbo drip starting so that was stopped immediately and then I followed with 4 rounds of cisplatin. That was my first recurrence. For my second I had just cisplatin which after 3 rounds showed NED from the midway scan. I did, however, continue with the final 3 rounds. If I were you Id enjoy the break from chemo, get fighting fit :). P.s. the funny thing about the reaction is I now cant drink coffee, I only drink tea which I NEVER drank before and I have to take piriton if someone peels an orange near me or I walk into a room where someone has peeled one ! go figure! lol.

  • Wow how strange! Yeah that's what in going to do enjoy my chemo free time thanks for your replies xx

  • Nice to hear someone else has suffered strange changes....

    I used to love blue cheese and now really don't fancy it, and I now drink a fraction of the amount of strong black coffee I used to, I'd been off tea for a long time and am now drinking quite a lot, and I've rather lost my sweet tooth... there are a few other things which I can't remember off hand...

    I wonder if that was down to the carbogem combo, the desensitisation regime or the bowel resection.....This horrid disease keeps us guessing in more ways than one! xx

  • I think people do react to the regime but I feel while you are having the scan fast enough, you are waiting long time for the oncologist unless he or she is going on holidays meantime. Look the chemo you did get has to have had some kind of effect, No doubt your oncologist will have plan b ready to go when you see him, There are other treatments out there so dont be getting upset, Some people are very sensitive to some drugs and you are one of them. The next one you may fly it. So take every day as it comes, get out and about and enjoy your two weeks break from chemo, plan something nice, a meal out or a trip out to take your mind off the chemo, I agree the disease is awful but we have to keep on fighting

  • Thanks Suzuki xx

  • Hello, yes and I agree the delay is worrying, never mind the awful waiting time for results. Mine tell me I need 2 weeks between the scan and appointment but then the docs phoned me yesterday to say they wanted more bloods because of what they'd seen on one I had a week ago! Is there any chance you could ask to bring the appointment forward? I was allergic to carbo, had two nasty reactions but there are other options, caelyx, weekly taxol, or displaying at least.j

  • Alison sorry to read this post. I have sent you a private mail. I am in clinic next Wed if you are around we could meet for a cuppa.

    You should speak to him and ask to move your scan results appointments forward a week. They are usually flexible and if you explain how worried you are they will work with you xo

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