Reaction to chemo

[claireRoberts76]

advice please... mums had a full blown reaction to her chemo in hosp today ... her 2nd lot... she did get a big rash a very nasty after her first one... shes on a drip now and not continuing with chemo today... this happened to anybody else i hope there is another one for her!! thank you

[Yoshbosh]

Hi Claire,

Don’t panic! (Easier said that done, I know!). This is surprisingly common, and the hospital will have a work-around for her for the next infusion. Do you know which drug she reacted to?

I had a massive reaction to the paclitaxel (rash all over the body after the first dose, then anaphylactic shock to the second), and the hospital changed me to a different drug called docetaxel and upped my steroids/antihistamines. I didn’t have another problem after that.

They may also try the infusion at a slower speed, or change the dosage etc. There are lots of options.

I hope your mum is comfortable now and feeling better after such a scary ordeal! It was probably worse for you as the bystander than it was for her! My mum was with me when mine happened, and I swear she aged about 10 years in the space of 15 minutes!

Vicki x

[claireRoberts76 in reply to Yoshbosh]

Im at home, my brother has taken her this time with my sister ... Im so worried here!!.. Not sure which one she had but the rash she had after the first one was terrible!!!!!!! oh ok... So it will work the same for her? Paniking terribly here!!! thank you so much xxxxxxxxxxx

[Yoshbosh in reply to claireRoberts76]

I can’t say that it will work the same for her, but she’s in good hands on her chemo ward. They will have dealt with this situation so many times before. I totally understand why you are so worried. Vx

[claireRoberts76 in reply to Yoshbosh]

thank you so much for reply!!!! great help to me and us xxxxxxx

[Caroles1 in reply to claireRoberts76]

Hi Claire,

I had a reaction, to carbo/taxol, went like a beetroot and couldn’t breathe, they gave me a slower infusion and upped my anti hystemines, it never happened again.

Don’t panic, they know what they are doing,

Carole xx

[claireRoberts76 in reply to Caroles1]

oh thank you!!! she's home now and ok!!... she's having a new one on thursday!!! x xxxx hope you are well xxxxxx

[Caroles1 in reply to claireRoberts76]

I am, coming up for 4 years no cancer, there is alway hope,

Great she is ok, best of luck xxx

[Wanthealth in reply to Caroles1]

That’s awesome 4yrs Ned and no recurrence!! If I may ask what kind did you have and what was your treatment? Thx. Sue

[Caroles1 in reply to Wanthealth]

I was 1c, but still not given long to live, due to the ascites that needed constantly draining.

I first had the de baulking op, then 6 months carbo /taxol,

Carole xx

[claireRoberts76 in reply to Yoshbosh]

yes thats whats its called!!! just asked my mum to ask the nurse!!! x

[Katmal-UK]

Hi Claire. I had a particularly nasty reaction to carbo, a grade 3 anaphylactic shock in fact and that was nearly 7 years ago, they swapped to cisplatin and that did the trick. Hope yr mum is ok xx

[claireRoberts76 in reply to Katmal-UK]

hello!!! yes this happened yest afternoon my brother thought we had lost her im a nervous wreck since mum was diagnosed... the worrying is so bad! They are trying a new chemo on thu! she's ok now thank you so much for asking! I would be lost without this group ... hope you are well too xxx

[Katmal-UK in reply to claireRoberts76]

I'm good thanks for asking. I had a night's stay in hospital after the reaction and went home fine the next day. Your mum is in good hands xx I know how you feel with the worrying, my mum had OC too so I know from a daughters perspective what you are going through. xx Big hug to you both xx Kathy xx

[claireRoberts76 in reply to Katmal-UK]

I hope you dont mind me asking kathy but you had it back in 2007 am i correct?.... Im so pleased you are doing well... Im one of 3 all in our late 30s and 40s still she's the queen of the family... So many questions and praying they can keep it at bay xxxx

[Katmal-UK in reply to claireRoberts76]

Yes Claire that correct. Diagnosed in October 2007 at the age of 48. I have had 2 recurrences . I was only originally given 'a couple of years' but as you can see still here! Feel free to ask me anything if you think I can be of help. xx

[claireRoberts76 in reply to Katmal-UK]

Oh thats fantastic you are amazing!... my mum's 71 in june ... its the coming back i find very scary and worrying!... When did it come back last? xxx

[Katmal-UK in reply to claireRoberts76]

My first recurrence was in 2011 about a month after my Dad was diagnosed with cancer and we were advised it was terminal. The second time I reoccurred was about a month after his death - I swear both times it was stress related. I have now been NED since August 2013. Everything about Cancer is scary but I am in the mind set that worrying doesn't change a thing except make the time you spend worrying unhappy. Make the most of every min with your mum, savour every smile etc rather than fretting or you will miss out on so much. Enjoy the here and now xx (goodness that sounds preachy lol) xx

[claireRoberts76 in reply to Katmal-UK]

I think stress brings on a lot too I totally agree!...So sorry for your loss but you are so amazing to get through all this!!!! thank you for replying to me and giving us lots of hope ... I really hope mum reaches remission and has many more years... Its so so scary xx

[Wanthealth in reply to Katmal-UK]

Hi Katmal. I am on my 1rst recurrence. Just started on carbo/gemzar. Then week later just gemzar. What drugs were you on and are u on a maintenance drug now? I started a yr ago with incidental finding Fallopian tube during routine hysterectomy... ca125 at highest was 28 then down to 3. NED in Sept 2018 after 6 rounds Then in January 2019 I had prolapse repair bladder lift ... found less than 1cm tissue came back positive 😌. First round of chemo was with carbo/taxol Thx. Sue

[Katmal-UK in reply to Wanthealth]

Hi Sue. I had carbo/taxol following diagnosis and was on a trial for Avastin. On my first recurrence I had carbo/gem but reacted badly to the carbo on the third cycle so continued with cisplatin/gem. I then went on a trial for Cedranib. For my secod recurrence I had cisplatin. After completion in late November (with CA125 of 7 and a NED scan in the Aug ) I was asked to go on another trial at the end December/beginning of Jan for Olaparib (a parp inhibitor). I am still on Olaparib, checked every 12 weeks with scans every 24 weeks. My CA125 dropped, and remains at 'below 3'. Do you know what grade you are or if you have the BRAC gene. I tested positive for BRAC2. I hope you are doing ok xx Big hug, Kathy xx

[Wanthealth in reply to Katmal-UK]

Thx Kathy. I do not have either BRAC genes. And All genetics were negative! I’m grade 2b

[Chick44nzrn]

Dear Claire . Sorry to hear how the reactions have been very upsetting which is so true but as others have said many different adverse reactions do happen but there are even more options of managing these . The doctors in charge know so well how to manage these episodes and your fears subside though it’s rather like being hit by a double decker at the time if you are one who reacts that way.The first FEC I had resulted in not only every side effect going but also it wiped out my white cells and I had 2 urgent admissions one for 4 days to hospital but after that the dose was reduced and for the next 9 weeks yes there were many side effects but nothing so serious , and honestly manageable if unpleasant !!Now on Taxol and this seems easier to tolerate .

My daughters were more upset than I was and I can well picture how worried you would be .

Yes chemo is dramatic and yes some side effects knock your socks off but for my part I’m getting through it by hook or by crook as others do and to celebrate ( with the help of the steroids!!)I held a supper party for 20 friends last Saturday in defiance of the brute C!! Pretty zonked out for a few days afterwards but really gave me a big boost !! All best wishes and I do hope things improve very soon .

Denise x

[claireRoberts76 in reply to Chick44nzrn]

Thank you denise! you have been through so much you have done amazing!... mums back on thu for another chemo! hoping this one is ok for her and then she can move on.... congratulations on holding such a big party!!! wonderwoman! are you in remission now?...the doctors have got plan b ready...poor mum going through the wars terribly atm feel so sorry for her... breaks my heart x

[Chick44nzrn]

Dear Claire. Watching someone you love going through hell is terrible for you . I think your mother will adjust to the chemo and if her oncologist is a great person he/she will make any adjustments . I’m only half way through with Taxol having had 9 weeks of FEC I e 3 treatments in all

Though it seemed like 22!! I had stage 3 very large breast tumour and apparently potential danger lurks but I simply can’ t

Afford to be pessimistic !! I enjoy life intensely in short bursts in between managing the side effects .

Your mother is so lucky to have a wonderful caring daughter as yourself .

Denise x

[claireRoberts76]

Thank you denise!! im very greatful to you! how are you?... Im praying mum will get through this shes my everything.. although im married with my own 9 year old daughter... love your attitude! Im getting there x