Clear Cell is back: So after being prepared to... - My Ovacome

My Ovacome

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Clear Cell is back

Lupilindz profile image
26 Replies

So after being prepared to hear breast cancer was back my Oncologist informs me it's the dreaded clearcell. We have a plan which I start a wk Wednesday. Carboplatin as still sensitive and Caelyx, monthly for Six sessions. Iv read all the different side effects on here but I just hope that my back pain and around my kidney can be managed as I find it very difficult to sit or lie at the moment. It was tough being told that there's no cure but my symptoms are treatable but I just have to keep fighting this disease as long as I can for myself and my family. Onwards and upwards x Linds x

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Lupilindz
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26 Replies
Tesla_7US profile image
Tesla_7US

Lupi, I am extremely sorry this is happening to you. My deepest wish for you is to be comfortable, out of pain and to carry on living. Tesla

Lupilindz profile image
Lupilindz in reply to Tesla_7US

Thanks Tesla, at the moment I'm still trying to get my head round it all hopefully get some meds for pain once iv seen GP.

Purple-iris profile image
Purple-iris

Hi Linds

Sending you love , prayers and wishing you all the best for your treatment . Talk to your team about pain management so you are more comfortable until the chemo kicks in . I had terrible ascites and struggled to walk and lie down when diagnosed and it is hard to keep your spirits up when all your energy is going towards dealing with the pain . Also made me very short tempered . Poor hubby had to put up with alot !!!

I am so sorry you are going through this again after your beast cancer . I am stage 4 OC high grade serous and also told when diagnosed not curable but treatable . Took me a while to get my head together and counselling helped but as you say we stay strong and fight this devastating desease for our families and make the most of every day . You certainly appreciate the little things a lot more . Last night I had fish and chips sitting over looking the beach with my beautiful daughter who has just returned from uni . Haven't eaten anything as tasty in a long while .😀 We are not statistics but individuals and no one knows what tomorrow will bring so yes take a deep breath and keep fighting onwards and upwards . Love Kim X

Lupilindz profile image
Lupilindz in reply to Purple-iris

Hi Kim, I will talk to my team but may give Dr a quick call as chemo doest start till a wk Wednesday. Iv had ascites drained from lung and iv been told there's still some around my bladder, which is where it had attached itself to in the first instance. I'm taking para, codeine and ibuprofen at staggered stages throughout the day but I feel it's gradually getting more uncomfortable. This is all so horrible but I'm do glad we all have each other to talk to xx stay strong yourself hun xx Linds x

LesleyGreengran profile image
LesleyGreengran

Sorry to hear that but it sounds as though you have a way forward x

Lupilindz profile image
Lupilindz in reply to LesleyGreengran

We do, but it feels like they keep us waiting forever.

85live4ever profile image
85live4ever

Hi Linds, it's such a strange world we live in there are those that chain smoke, drink like a fish & do no exercises & never get cancer. Then there are others that suffer with more than one dreaded cancer. I am so sorry to hear this after being free of bc for so long you are now fighting the fight once again.

I am on Caelyx, still thank God treatable but not curable. I haven't found it too bad so far have my second this Wednesday.

Seeing you have had bc & now oc have they tested your genes to see why you have come down with both cancers?

I do have lots of pain but its around my bladder where the cancer has decided to go this time. It's so painful I can't even wipe myself after a wee. I do understand where you are coming from. Let hope this chemo works for you good luck take care Cindyxx

Tesla_7US profile image
Tesla_7US in reply to 85live4ever

85live, goodness, isn't there something your doctor can do to stop your pain? I hope you find relief. Can they give you a topical lidocaine to numb the area?

Lupilindz profile image
Lupilindz in reply to Tesla_7US

I will ask Tesla, they don't actually give you alot of information for pain management but I will definitely enquire. Thanks x

Choski profile image
Choski in reply to Lupilindz

Macmillan will help with pain management. That is how I first met my community nurse. Please call them as soon as possible

Clare xx

Lupilindz profile image
Lupilindz in reply to Choski

Thanks Clare, I met her once at the beginning and iv not seen her since, all I remember is her name Lisa, will have to ask contact details. How you doing?

85live4ever profile image
85live4ever in reply to Tesla_7US

Hi Tesla, thank you for your concern I have been in pain for so long pain killers dull it a little. My new GP has given me quite strong pain killers but again they can only work so much. I might of been on something like this when I did my back in I was almost crippled. I will ask next time take care Cindyxx

Lupilindz profile image
Lupilindz in reply to 85live4ever

Hi Cindy, yes iv been tested and they're not connected, I was told I was just unfortunate. My. BC back in 2007 was Her2 pos, and ovarian 2016 Clearcell now with recurrance in pleura ascetic and lymphnodes also some ascites by bladder. I will look into more pain management and that's for letting me know Caelyx is copeable so far I start next wed. As got to have a hickman line this Friday xxFingers crossed for us both Linds xx

85live4ever profile image
85live4ever in reply to Lupilindz

Hi Linds, yes, I will keep my fingers cross for you. I will see my onc tomorrow & not looking forward to finding out about my ca 125. I have heard it can go up before coming down on this chemo. Wishing you all the very best for Friday I will be thinking of you. Take care love Cindyxx

Lupilindz profile image
Lupilindz in reply to 85live4ever

Thanks hun, hope it goes OK today xx

Lupilindz profile image
Lupilindz in reply to 85live4ever

It's all horrendous, but we have to get on with it, I'm learning so much off all the girls on here and the help is amazing x it makes the black hole seem further away when we all have each other xx

Grace123 profile image
Grace123

Hi Linds Just to say that my heart goes out to you and your family. Just sending you lots of love & hugs, and wishes that your pain is well controlled and that you respond really well to treatment with minimal side effects. xxx Sundra

Lupilindz profile image
Lupilindz in reply to Grace123

Thank-you hun xx

rppizio profile image
rppizio

Please try to drink as much water as possible to minimize those side effects. That seems to be one of the best things we can do for ourselves when on Chemo.. Gives those organs what they need while letting the chemo do it's healing magic.

Lupilindz profile image
Lupilindz in reply to rppizio

Thank-you, I do try to drink lots but somedays you just feel awash with it all.

The disease can be managed for many years and I wish you the best, I know its not what we want to hear but as long as there is a plan, we can cope, all the very best

Lupilindz profile image
Lupilindz in reply to

Thanks hun, iv read so many good reports on here, and I will go with whatever is advised but sometimes all the what iffs take over in my mind..

thesilent1 profile image
thesilent1

Hi Lupi, sorry you've have this to deal with again. I do hope once your chemo starts you will start to feel relief of your pain. Best wishes. Ann xx

Lupilindz profile image
Lupilindz in reply to thesilent1

Thank-you so much. All being well next Wednesday, it's weird to think that day can't come quick enough so perhaps I can get some relief from this pain and anxiety.

Yes it is worse thinking about it the second time round but once you are on that chair, your mindset will kick in. I wish you the best with treatment

Lupilindz profile image
Lupilindz in reply to

Thanks hun, that's exactly what my dad said.

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