following on fromm my last post, I came out from hospital on Tuesday. Surgeon found one tumour wrapped around my ureter and another mass which also proved to be cancerous.
I'm told that it is rare to have had surgery for a recurrence and so the consultant wants to treat this as a 'new' cancer and blast me with carbo and taxol this time 'round (only had carbo the first time).
He's also told me that I should think of myself as having a chronic disease now as it is likely I'm going to keep having recurrence and therefore keep having chemo....
I am freaking out about the chemo; it took 2 years for my nails to recover from the carbo and taxol seems to be so much worse in all areas. My veins have been damaged too as was proved during the recent hospital stay and so the thought of canulas etc.......
I am just so scared by having to face this again.....
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Eleni
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Hi Eleni. I remember feeling scared on my first recurrence, terrified in fact but you did chemo before and you can do it again. Ive had two recurrences and so I know how you feel. I wish I could reach out and give you a big hug. As for your veins maybe you could ask for a PICC line that way you wouldnt have to have a canula each time? do you know when you will be starting your chemo? Maybe you could ask to speak to a counsellor, I found that helped me. Kathy xx
Ha-ha..........I am a qualified counsellor and have been working as a qualified CRUSE bereavement counsellor for 2 years!! I am surrounded by counsellors....but I know what you mean. The psychological impact is huge. I'm wondering about getting some diazepan actually even though that will add to my cocktail of drugs....it will hopefully take the edge off the fear.
I suspect that a PICC line is the way that they will go. What is that like? Did you have any problems with it?
Thank you for the offer of the hug. I am feeling in need of a lot of those recently.....and am pleased to say I'm receiving a lot of them.
lol sorry didnt realise you're a counsellor. I put off having a PICC line the first time I was offered one through fear but once its inserted, which again isnt too bad, it was easy to live with. I think it freaked out others at work more than me so I used to wear slightly longer sleeves or cover it with a bandage. I had no problems whatsoever with it, apart from having to make sure I kept it covered each day when I showered. I went through a lot of cling film! As for carbo and taxol that wasnt too bad either. Im now allergic to carbo so have to have cisplatin which is harsher. Make sure you take your antisickness and be kind to youself, plenty of duvet days! glad you're getting lots of hugs, always nice to have those .
No need for clingfilm now to cover the PICC line you should get a prescription for a 'Limbo' it's a special waterproof sleeve that can be worn for showering or in the bath. Makes life so much easier and as for the PICC line I'm on my third and I wouldn't be without it.
That's interesting to know. It's been over two and a half years since I had mine removed so next time I'll make sure to ask for one. Thanks for the info. xx
You're really kind Katmal. Thanks for the advice about the PICC too. Looks as though I've got about 3 weeks to recover from the surgery and then the chemo will start and they are going to go with the veins I've got at the moment!
Sorry you have to go through this again. I think we all agree a reoccurrence diagnosis is harder than first time round. I had a port a cath fitted this time round and it has made such a difference . This a a little tube under the skin right below your clavicle /shoulder . They access it in a second every chemo visit and chemo flows straight into a larger vein so no irritation ,soreness ,discomfort or delays! . When I think back to my first round and the struggle with veins I don't know why this wasn't suggested. It's as easy as a car pulling up at petrol station and filling up ! I can swim and shower as normal so no bothers there .I would certainly ask about this . I also had a pic line in during my surgery for recurrence but had an unpleasant experience with this ..my arm swelled up and it was always sore . Think I was unlucky with this as katmal had good experience.
Don't be afraid to ask for another opinion on surgery for reoccurrence either . I was told no at first but when got second opinion at larger centre they did do surgery . Of how much benefit it is to me is probably Unknown but as a mum of two young kids I am willing to try anything. Best of luck with second line . I'm sure you will find your fighting spirit and feel more in control once you start treatment . Have you thought about cold cap to prevent hair loss with taxol ? Worked really well for me although it does make appts longer and first few mins but uncomfortable. Be kind to yourself .ad you said the psychological aspect of this is huge but u get great comfort seeing so many women living well with this as chronic disease in this forum
Oh........a cath a port sounds a positive thing!? Thanks for that suggestion Susan. At the moment I think they're going to use the poor veins I've got left but that sounds something to suggest for the future rather than a PICC. Bless you xx
Big hugs to you, I know that feeling well. When I was told that I would need chemo again and to treat it as a chronic illness I was devestated, I'm on my second line now and getting on with things as you do, what else can you do!!
It is frightening and overwhelming but you will get through it, you will find the strength to do it. Sending lots of best wishes and hugs to you. We are all Hereford you xx
Hi KMAllan....you're so right. I'm on my 3rd line now and 'just geting on with things' too 'cos yeah - what else can you do!! It just still hits me sometimes that I'm going through all this and feeling so crap and I'm going to have to go through it again - and again - and again......then I get distressed as I'm sure you understand.
Just have to keep doing it and hop that with each remission, they get better at treatment/ do more research/ find some better way fo beating it!!
Thank you, it's so nice to know we can talk to each other and know exactly how each other feels. Keep going Eleni and yes I agree we have to hope that they are closer to beating oc!!!
Take care and hope you enjoy the good days, be kind to yourself on the not so good days. Karen xx
Hi there, I remember being told my ovca was back, and like everyone else, I was devastated as we all hope we've beaten it first time. As far as no other surgeries, I've had a further 2!once on liver and once on abdo lymph nodes, each 2 years apart. I haven't had any further chemo since my initial 6 rounds, as I was told it was clear cell, which doesn't respond well to it, so was easier to excise it.
I hope you take heart from the lovely ladies on here who have more experience with chemo.. I will certainly have a port cath fitted when I do have chemo again- like you I have been told it will keep coming back now, but we keep going onwards, and one day this blooming disease will be beaten.
I agree that second time is, in some ways, harder. I got very down, especially on the days when I was home all day, as my partner and friends were working. I am a counsellor too, having worked in GP surgeries for years, but I still asked for a referral to one and it helped. As you will know it gives you time to focus on what you are going through without having to worry about the effect your feelings are having on others, as we tend (always???) to do with friends family and colleagues.
It seems that if you have carbo with another drug you get less carbo so the effects may not be as bad as you expect.
I too have a port-a-cath now and I don't know why they don't suggest them more often. I think it may be because they haven't got used to it being a chronic disease that will require repeated treatment. Also it does mean going for a flush monthly, whereas the PICC line comes out after treatment. I had a PICC line but reacted to every dressing they could find so they eventually took it out and gave me the port-a-cath which I much prefer as I like to swim.
I hope you feel more positive soon. I've had a wonderful time since my second line. You'll be through by summer. Can you arrange some treats for your good weeks and for when it's all over?
Hmmm..........holidays! It is our 25th wedding anniversary this year and we had in mind an amazing trip to the Sea of Cortez to see a blue whale. Might have to lower our sights a bit, but I know what you mean! Treats are very important.
I certainly would have asked for one if I'd known the difference. They use them far more in the US from what I've seen on the Inspire forum. I saw a whale off Mexico's Pacific coast and it's stayed with me though over 10 years ago. Hope you get there but if not there are whales and dolphins round our coast as well - Farne Islands, Pentland Firth and plenty of other places. I think of them when they're sticking needles in..
I know I will never forget my first sight either....I cried the time I saw an Indian tiger in the wild. Good to make memories...
We've booked for the 25th anniversary week now and will actually be staying in a castle!! for the anniversary for 2 nights. Not a blue whale but definitely a bit special eh?! xx
I've booked for the 25th wedding anniversary next month. Consultant not happy about me going anywhere abroad so............we're staying in a castle!!! That is definitely a treat eh?!! Hee-hee. Eleni xx
I have had surgery (November) for recurrent disease with an isolated tumour in my pelvis and attached to my sigmoid colon. Have had tumour removed and 45 cm of my bowel. Four lymph nodes, two of which had mets.
They also are treating me as if a new disease as although histology shows recurrent in sigmoid colon/ pelvis it is three years that I have been NED.
I start chemo Friday but have chosen Carboplatin only, as they tell me it could be curative however it could also result in another recurrence which is more common, so I was given the chemo options Carbo/Gem Carbo/Taxol or Carbo, I weighed up the odds, looked at the research and because I am P53 positive research shows that Carbo alone has good results with this, clear cell/serous mix but this time more serous than clear cell. It's all a gamble anyway I just have to decide which horse to bet on as there are no givens with OC
You have obviously been having a difficult time too and have obviously reached a decision which suits you. I wish the best of luck and hope you keep well..
Let us know how you get on...Thoughts are with you
i just wondered how you were getting on with the Carbo? I had that only last time so have some experience with what to expect if you think that might be helpful? One thought is about my nails. they were damaged and took 2 years to recover so I've been paranoid to protect them this time around. Onicolife drops were recommended by Ovacome and I have been using them religously. My nails are ok so far and I thought you may like to explore that? I also found that I suffered with night sweats and used a camping pillow filled with water which we kept in the fridge during the day and I slept on.....it was SO helpful!! Amazon for about £7 and that symptom was dealt with.
I had a really bad time on the dose three. Now my hands and feet are peeling and feel sore. Not sure what the next step is as seem to be having reaction each time a bit worse. Saw GP she said it's the carboplatin they may stop it.
Yep, when I had carbo last time, my feet and nails suffered terribly. Strangely, it was my right hand and left foot which were worse!
This time I've prepared! and have purchased onicolife drops for my nails [£15 a bottle - google and you'll find them] and my G.P. has prescribed Dactacort cream for the peeling feet- it works. I also use udderly smooth or Vaseline 'the pink one' to keep everyrthing moisturised which definitely seems to help.
I've just had dose 3 and am suffering with chemo brain already, restless legs [for which my G.P. prescribes Piriton 'cos it knocks me out!]. The joint pain and other shit side effects I expect to hit tomorrow....not that the others aren't shit too eh?!
Focussing on good things like getting my counselling practice sorted out with a website and going to Boots to choose some new frames for sunglasses.....Have a good day. Eleni xx
I have had five recurrences and four lots of surgery so it is not out of the question.Each time mine has been an isolated tumour so It has been monitored for a few months and then removed.Each time has been major surgery and I have two stomas ,half a diaphragm and a lump out of my liver but I am still here and I really didn't want more chemo so I am glad my surgeon persuaded me each time .Make sure that surgery isn't an option and good luck.Vivxx.
HI Eleni....I can't add much to what the wonderful ladies here have already said. I would push for the port a cath. It makes it so much easier and efficient as described in one of the posts above. I'm in the US ,and it is used in most of the people I know who have had chemo. I finished my chemo 11 months ago, and I still have mine. My ONC said he'll leave it in for a year......if no recurrence in that time, it will be removed. Prayers and hugs to you.......Judy
Thanks for this Judy. The consultant reckons they will go with the veins I've got initially and then change if they fail. I didn't want a PICC line though so it's so good to think there's an alternative...
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