Really down right now

[goldigger54]

I've just finished gem/carbo but had a bad reaction to carbo I'm now told I'm allergic to it I feel that the symptoms it was to control are back I'm scared MRI due next Monday

[BJ_UK]

I didn't have to have chemo, so don't have any advice to offer, but just wanted you to know that you are not alone. I'm sure that someone else will be along soon with advice, but for now am sending hugs and best wishes for Monday!

Barbara

[goldigger54 in reply to BJ_UK]

Thank you Barbara much appreciated have a good day too

Christine x

[doodoolatrice]

It never ceases to amaze me what the mind can do to a body when we're under extreme stress, I was convinced the horrible pain I had in my right hand side a month or so ago (the pain started as soon as I had a scan and I was awaiting the results) was the cancer on the rampage. I was extremely stressed at the time and everything was getting on top of me. I was shocked when the scan came back and absolutely nothing showed up on the right hand side. SInce then the pain has completely disappeared and I feel as right as rain. I wouldn't be so flippant as to say you are imagining your symptoms as you know your own body but I do know that in my case my body plays havoc with my head sometimes. I am sure there will be other options available to you apart from carbo. good luck with your scan and hang on in there, you've got this xx

[goldigger54 in reply to doodoolatrice]

Thank you it's kind of you to take time to reply 3 yrs ago I had a full time job a future and things were going well a few weeks later I'm told I have cancer I'm facing chemo radio and a radical hysterectomy after pet scans cat scans MRI scans the surgeon tells me he removed 8 lymph nodes but it was found in 3 then the following cat scan shows no disease I return to work but 11 months later face a reacurrance this is tackled with a combination of carbo /taxol/avastin this time I'm told a good response but after blood clots on my lungs a massive haemorrhage on Xmas day 2014 I did have nearly a year without symptoms now I've just finished 6 rounds of gem/carbo only 4 carbo as I had an anafalactic shock on round 5 but I don't think it's been successful this time I have blood in my urine all be it slight and again slight occasional bleeding from my vagina I dread what is to come I've now had chemo 3 times so I'm expecting my onc to say we can't help you I have a son at home still he's 18 but has aspurgers I worry what will become of him he only has me ☹️Gosh sorry for rambling

Christine x

[Solange in reply to goldigger54]

Hello Christine, I'm sorry things are so worrying for you at the moment. It's a horrible time for you and we must all know and sympathise with how you're feeling, right now. The sooner your MRI scan is done and you get the result, the better. Fear of the unknown makes everything worse. You've got a lot to contend with, especially with the added worry with your son but try and keep cheerful, at least for his sake. I find acting cheerfully for my family's sake often ends up making me actually feel more cheerful, strangely. Have some happy music on in the house, have the light on if it gets dark earlier than usual as being in the gloom can make things seem more depressing. On a dull day I often put the under-cupboard light over my worktop in the kitchen, on, and it makes such a big difference to me. I say " let's have some sunshine on" and it helps me cheer up.

Sending a big hug to you. Keep in touch and let us all know how things go for you. Love, Solange 😊 Xx

[goldigger54 in reply to Solange]

Dear Solange thanks for taking the time to reply I will definitely try to be a bit more upbeat I do realise worrying is a waste of energy but as everybody knows it's not always easy to get your mind set on positivity

Christine x

[doodoolatrice in reply to goldigger54]

oh Christine you really have been through it haven't you, hardly surprising you're feeling so low. Having kids dependant on you makes it even harder. I have two aged 13 and 17. I can't really offer any advice so I just wanted to say best of luck with the scan, keep us posted, love Kerry X

[goldigger54 in reply to doodoolatrice]

Thank you Kerry

Christine x

[GoldenGourd in reply to goldigger54]

Christine. I am sending you supportive energy and hope you feel stronger soon. On too have a son with Aspergers, who is 16. I worry about him and what will happen to him in the future. Strangely enough he asks to be told "totally straight honestly" about what is happening. Although I do censor it a bit he gets most of it as he has asked for. His Aspergers mind seems to accept it with less emotional baggage than my older, neurotypical son. Obviously you know your son best but you may be pleasantly surprised at how he sees things. We have quite stark but oddly positive talks about a Future without Mum, and how he will get on.

Anyway sorry to go on. I wish you all the best. As others have said better, there are lots of options and ways to help us keep on keeping on.

Netti

[goldigger54 in reply to GoldenGourd]

Thank you netti I appreciate your reply and support

Christine x

[Rlenesue in reply to doodoolatrice]

It is very difficult, as you know, to get a diagnosis such as this alone. Compounding it with chemo that may or may not work, on your case, allergic to treatment that produces an allergic reaction is devastating. However, there are other chemo drugs that wont have an allergic reaction for you. They may also be able to lower the dose thereby not creating an allergic response. The MRI will help the doctors decide which avenue to take to combat this dreadful disease we all share. Doctors don't like admitting defeat, their egos get in the way so be sure they will do everything possible for you. Having a positive attitude is key... Get distracted from negativity, watch,a great tv show, read a good book, take walks, spend time with your son. My daughter and I laughed often, freely, and loudly. It really helped. I'm sure your son is stronger than you think and together you'll get through it. There is light at the end of the tunnel.

[goldigger54 in reply to Rlenesue]

Thank you so much I appreciate all the responses I've had its made me feel so much better I was fading fast

Christine xx

[Hidden]

Hi, I reacted to carboplatin on my 4 chemo and had to have it stopped. on my 5th they said they would put it in over 2 hours to see how I reacted, but 10 mins. in I reacted again and it was again stopped. My 6th chemo was just gem/avast no carbo. I worried that because I didn't have all the carboplatin my cancer would'nt go, but my scan showed NED so I am now on avastin as maintenance. I did have an allergy test for other platins. chemo's and carbo, which showed reaction to carbo but not the other ones, so the doctor said if cancer comes back then he can give me the other ones,

Hope this helps, don't worry there is always an alternative, I'm sure your scan will be fine, just keep positive. Onwards and upwards. sending lots of hugs. xxx Jeanette

[LittleSan]

No matter how good a talking to I give myself or how much insight I have into my behaviour, I always have pain and bloating on the run up to results time. (5 years down the line with one recurrence and countless scans!). Anxiety often manifests itself physically and so perpetuates the anxiety/pain cycle. Try to live in the present and not worry about the results (as easy as that 😕!). Live in the present and let the future look after itself. Worry is a total waste of precious energy unless it is pushing you into action. Plan nice things and give yourself a little treat every day on the lead up to results. Chin up. Hope you're feeling better today. Xxx

[goldigger54]

Thank you littlesan I will try to pick myself up I know I should

Christine x

[Steghart]

I am also allergic to Carboplatin after last line and if i need it would now be able to have Cisplatin so don't worry there are still lots of other options out there. I have an 18 year old and in my job used to work with children with Aspergers, worrying seems part of the deal with motherhood but you must focus on looking after yourself so you will be here for him. Waiting for scans is awful, I find distraction the only thing, I get into some dreadful tv box set or get friends to come around. Good luck, Claire xxx

[goldigger54]

Thanks Claire my job before I was medically retired was to look after young people with disabilities as I was part of that team who worked for the council unfortunately because of time off due to operations and treatment after 15 years they couldn't wait to get rid of me at one point I was told by HR that I was not fit for purpose so at 53 I accepted medical retirement which I now deeply regret but hindsight is a great thing xx

[meboo]

Mum is allergic to carbo after carbo/gem (it was clear from her ca125 that this regime was not doing the job so she is in a different position to you). She is just about to start cisplatin as there is no relation to an allergy to carbo and an allergy to cisplatin. Also, she has been told it may be possible to revert to carbo in future. I do hope your treatment has been more successful than you expect, but there are still lots of options out there. As for your current symptoms, For eg, chemo destroys mucous membranes & bladder is lined with - guess what - mucous membrane.

[goldigger54]

Thank you mebo it's kind of you to reply I hope your mum has some success with her latest regime

Christine x

[Juliette35]

Hi golddigger, I know how you must be feeling you have been through such a lot. I too am on my third sort of chemo, I was on carboplatin and taxol last year. Then had avastin, but just had three of three weekly avastin then ct scan showed it wasn't working. Was then put on caelyex, had three lots of that but my ca125 was rising. Taken off that now having weekly taxol for eighteen weeks, last time I saw my oncologist he said my numbers had gone down so praying that this is doing the job. I am going to take solang's advice , put more lights on when it's getting darker ext. Am thinking about you and sending you big hugs. Love Julie xxx

[goldigger54 in reply to Juliette35]

Thankyou juliette your very kind to take the time to answer me today I take comfort from everybody's kind words

Christine x

[IrishMollyO]

Hi Christine

I can't put it any better than the other ladies. As far as I can see a good few ladies become allergic to a Carboplatin . The good news they tell you is there are always alternatives . Hold on to that positive news and good luck with your MRI

XXX

[goldigger54 in reply to IrishMollyO]

Thank you molly

Christine x

[Caroles1]

Hi Christine,

I don't have any experience of what you are going through,but,...not fit for purpose? Don't agree, you have so much to offer and lots to look forward to.There are so many options out there and I know you are scared, I am too for my routine scan end Oct. but, what option have we got but to carry on?

There are always people who need us, but we have to be kind to ourselves too.Try and do some things you enjoy,get together with friends who will lighten your mood,have a long soak in a bath surrounded with candles,anything to pamper yourself.

We are all with you for your scan, please try not to worry and let us know how you get on,

Carole xxx

[goldigger54 in reply to Caroles1]

Thank you Carole I will try everybody's words are comforting

Christine x

[LesleyGreengran]

I found out I was allergic to carbo in January. There are plenty of other options. I'm on caelyx now.

[thesilent1]

Hi Christine, I'm sorry you've had problems with the chemo anbanbd are so worried. Is there any chance you might have a bladder oeroer kidney infection? I had both after my 3rd cycle of chemo which caused bleeding. It is worrying when you see blood. Can you pip along to your poractice nurse and take a uribe sample with you foifoir her to check? Good luck. Ann xo

[goldigger54 in reply to thesilent1]

Hi Ann thanks for your reply I did go to my doctors last Thursday she dipped my urine told me there was a trace of blood in it then she said she would send it to the hospital to be tested I've phoned twice this week again today for results but still waiting today they tell me that the surgery computers have crashed so I need to try later , I think the worrying thing for me is that I had bleeding before the reacurrance and during treatment it stopped my last chemo was 3 weeks ago today and it seems to have returned it's not loads or stopping me doing anything but more of a pinky looking discharge sorry for being grafic so I've made an appointment to see another doctor at 5 today see if I can get the results fingers crossed

Thanks again Christine x

[knoxie]

Hi Christine, I have not had an allergic reaction to carbo (am on carbo taxol) but have had three doses of 6 for 2nd re occurrence was just dats away from scan and was rushed into hospital with suspected shingles. Banged up in isolation and pumped full of antivirals and antibiotics, my own pain killers were pretty strong so given top up oramorph for pain. Had my half way scan and no change to tumours but my kidney was blocked and not working so trotted off to urology department and sorted out tremendous relief. I'm still in hospital awaiting stent so I can go home. A bit sad that carbo has not done its job yet but silver lining is dodgy kidney spotted and sorted. Round four carbo taxol coming up Tuesday so am going in with positive thoughts, I am so sorry you have had a bad reaction. I am sure there is an equally efficient chemo out there for you as my oncologist assures me. I can't have surgery this time so put on your happy hat and best foot forward. Keep smiling and only think positive thoughts. Big hugs Ann xxxxx

[goldigger54 in reply to knoxie]

Thank you Ann

And I hope your procedure goes well and you recover soon this disease is rotten and strikes us without warning I can only hope for a good result but as my Macmillan nurse said to me 14 months ago well Christine unfortunately it's never good news for you is it , that was the last time I even bothered speaking to her I think her words have stuck with me so I always expect the worse however all the responses on here have been so caring and have made me feel

So much better it's so good not to feel alone

Thank you Christine x

[knoxie]

Always look for the silver lining😃xxxxxxann