Hi REDLIZZIE, I had my first chemo yesterday for an ovarian borderline tumour also diagnosed in March/April. I was told at first that I didn't need chemo but after about ten weeks post op my abdomen started to fill with fluid again and so they think there could be some cancer activity in my abdomen. The chemo thay gave me was taxol and carboplatin. I had a very bad alergic reaction to the taxol and they had to stop it., but the carboplatin was fine. I have to go back now to the consultant to see if I can continue with the taxol on a lower dose or if I need to change to a different chemo. Today I don't feel too bad, does the side affects hit you all of a sudden or does it come gradually with each chemo cycle? I hope you are well and managing to cope with this awful diagnosis.

Love Kathym xx

Hi REDLIZZIE, I had my first chemo yesterday for an ovarian borderline tumour also diagnosed in March/April. I was told at first that I didn't need chemo but after about ten weeks post op my abdomen started to fill with fluid again and so they think there could be some cancer activity in my abdomen. The chemo thay gave me was taxol and carboplatin. I had a very bad alergic reaction to the taxol and they had to stop it., but the carboplatin was fine. I have to go back now to the consultant to see if I can continue with the taxol on a lower dose or if I need to change to a different chemo. Today I don't feel too bad, does the side affects hit you all of a sudden or does it come gradually with each chemo cycle? I hope you are well and managing to cope with this awful diagnosis.

Love Kathym xx

Hi Kathym

I too reacted to one of my doeses of Taxol, they stopped it for an hour and then ran it over a longer period of time, the next time I took steroirds before hand (on top of the pre-med one) and it was fine. My cancer is back again and this time I'm having Doxil instead of the Taxol, its supposed to give less side effects (I still have neuropathy in my left foot) but the Taxol is still the treatment of choice (gold standard). Start on the 16th July lucky me!

If I remember rightly i got gradually worse over 3 days and then improved after 7, it is accumulative and things like the fingers, taste ect get worse with each treament. It's all bearable though just don't try to do to much, listen to your body and take it easy when you need to. Memory gets worse too and takes forever to improve!!!

Long time since RedLizzie posted, hope your OK.

Keep your spirits up, hopefully you've only 5 to go!

Love Jackie

Hi Plaxie,

Thank you for your email. I am so sorry to hear that your cancer has come back. Do you mind me asking what stage ovarian cancer you have? I think the consultant will probably suggest running it over a longer period of time, but it just makes me feel a bit nervous to try it again. I have only got five more treatments to go like you say and thank you for the information it has helped. If I don't hear from you before, good luck for the16th July, I hope all goes well.

Love Kathym

Hi Kathym

No problem, stage 3C. Had deposits in the peritenum and a small tumour attached to the bowel. Had 3 lots of chemo then operation, usual but they left a 1/2cm tumour on the bowel as it would have meant a colostomy which they felt was unnecessary as it was small enough for the chemo to sort, based on the fact that he could not find any peritioneal deposits cos the chemo had got rid of them. I then had a further 3 doses of chemo.

I know what you mean about worrying about the next dose, I was really nervous when they restarted the transfusion after my reaction! then after I developed the first blood clot I was paranoid when I had the next dose but had settled down and sorted myself out by the time I developed the 2nd blood clot. I'm terrified that when I have chemo this time I'll do the same again espically as my blood is still sticky despite injections and Asperin! bad enough thinking I may have to go through arterial clot busters again but would that mean being left with no treatment options. Am trying not to worry but can feel it slowly building!

My oncologist says ovarian cancer is not cureable but it is treatable, unfortunately for me I only got 8 months from my chemo but there are others who have got years between each treatment. Scary times but you can cope and staying positive really helps, not easy I know but well worth it if you can manage it.

Hope your next chemo (if its the same) runs smoothly

All the best

Jackie xxx

Hi Plaxie,

Thank you for the email. It sounds like you have had a bad time with blood clots, it is very worrying and at times it is difficult to stay positive, but I manage it most of the time, I hope you do to. I have my next chemo on the 13th July just before yours, I hope yours runs smoothly too. When I had my op I was told I may have a colostomy but thankfuly I didn't need one.

I'd like to send you all my good wishes,

Regards,

Kathym xxx

Hi Kathym,

Not sure if you can read what I posted to Jackie but I will send you this anyway. I am interested to know how you noticed that something wasn't right. I thought mine was my bowel as I couldn't stop going to the loo and even with taking Laporamide I was still going. It was then that the bowel specialist found the lump, but he knew straight away it was in the ovarie. It was pushing up against the bowel so if it had gone the other way it would have gone into the pelvis.

I find that about 7 days after chemo I feel bad, with various things like chills and aching joints, but because my temperature never goes up I never know when I have an infection. I would say to you that if you feel unwell then ring the chemo nurses and go and get it checked as I left mine so long that my white cell cout was to low. I also had an injection of Neulasta on my last cycle to keep them up but still ended up last week going in for 3 days with dehydration. I think the tumour has moved near the bladder as up until 2 days ago I could not stop going for a wee, so I was afraid to drink to much water.

Its all ups and downs and when your up your great but the feeling when unwell is not nice & you see people going about there everday things and just want to be like them. I now stay way from shops and try not to go near people, its hard but I think its worth it as being in Hospital is not great & ours is an hour & 15 min drive away so for my partner to come everday is hard going.

I hope this helps you and I am here if you need a chat......

Love Eileen...xx

Hi Eileen

Nice to hear from you again, its sounds like your having a horrid time, I was admitted twice for 7 days each time and that was bad enough! 'Fortunately' for me it was with the bood clots which don't leave you feeling ill (painful though!). Unlike you my neutrophils never dropped! I even had chemo with a cold with no ill effects lol guess we're all diffferent.

You sure your need to pee ain't a water infection? only ask as my only symptom was a need to pee but only when I bent down it wasn't constant. Better get it checked out cos if infection you NEED to drink (esp in this heat wave!)

Keep in touch and please keep your fingers crossed for me on the 16th!

Love and best wishes

Jackie xxx

Hi Kathy

Will be thinking of you on the 13th I'm sure you'll be fine. Colostomy's are never nice as Tonysong will testify! glad you avoided it, only, what, 3-4 months to go we can handel it.

Stay strong

Love and best wishes

Jackie xxx

Good morning Jackie,

Thanks for reply, I will have everything crossed for you not just for the 16th but all the time.

They did check for water infection, they are brilliant at the Hospital I go to in Aberystwyth, they know you by name so you feel your not just another number. The slightest thing and they are testing you. I have had 2 chest X-rays because of a pain I keep getting in my back and they do blood cultures when I get an infection. I am off for scan today so up early but I can't have a cup of tea or toast but at least I will know soon on the size of this thing.

I couldn't believe when I read that it had come back on you. How many chemo's are you having this time ? Its strange how everyone is different as most people I talk to sail through it but unfortunatly I am the unlucky one, still I know it passes....

Love Eileen. xx

Hi REDLIZZIE,

It's lovely to hear from you. My problem started with a pain in my left side and back in December last year, I was given brufen for the pain. The pain eventually moved to the front around my abdomen. I also had very bad diarrhoea which lasted for about eight weeks with lots of bleeding from my bowel which I thought was cancer, but turned out to be very bad haemorrhoids. After a few more weeks my abdomen began to fill with fluid and I looked about six months pregnant. I had an ultra sound and ct scan and that is when they found the tumour on my ovary.. I had a hysterectomy and was told that it was a borderline tumour and that I didn't need any further treatment. After ten weeks my abdomen filled with fluid again and the docs thought that there was 'something going on'. They had removed the omentum but had to leave a small amount behind because they said they couldn't remove it all, and they think that is where the problem is coming from. I have now got to have 6 treatments of chemo (carboplatin/taxol) at three weekly intervals. I had a bad reaction to the taxol and now have to see the docs to see if I can have another try but at a smaller dose or maybe it to be given over a longer time. Are you on the same regime? I am sorry you havn't been feeling well, I hope you are feeling well now. Thank you for your email, it really helps to have someone to talk.

With my very best wishes,

Kathym xxx

Hi Kathym,

Yes I to am on that one, I am lucky as I had no reaction to it (so far ) anyway.

Its funny how the Drs seem to have different regimes to put you on. At first I was only having the 3 chemo then the operation & then the 3 more, but then decided on 5 and one after but now all 6 then op then 2 to mop up as they say....

It was also Dec when I started with mine but I had no stomach swelling up so was convinced it was the bowel. I was so shocked when they said ovarie. I am curious to see what size it has shrunk to and I had my scan today so they will probably tell me next Tuesday when I have my chemo..My Drs are great and you feel so at ease with them. I had to drink the iodine drink this morning (2 pints ) of it, and it tasted disgusting. I have had it before the chemo but it didn't taste that bad so it must be the chemo that makes it worse.

I do hope your chemo goes well for you and if you want to talk to me then come on here and I will send you my phone number for a chat. I know you will have all your freinds and family around you but unless you have gone through it then they dont understand.

Take Care Love Eileen. xx