I hope you are all keeping as well as possible at this very strange time.
I haven't posted for a whole because basically nothing was going on with my treatment. Like many of you I was on 3 weekly phone appointments with my oncologist.
Two weeks ago everything changed after an emergency admission in pain. The CT scan showed growth of disease in my liver mets and also a big jump in the size of my mass lesion on the Pouch of Douglas from just under 6cm to almost 10cm in 2 months. I started weekly paclitaxel on Friday and I am relieved that I am back on treatment although I am disappointed by the rate of growth.
Sending you all lots of love
Sian xxx
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Welshandproud
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Glad you've started chemo. I found weekly taxol somewhat easy to cope with, lost my hair of course. This is the longest my hair has been in four and a half years but it looks such a mess since I have little if any skills on the hairdressing department. If it weren't so hot and there's nowhere to go anyway, I'd put my wig on.
Has your team said anything about why they are treating you now you've had such pain, but wouldn't consider it before? Do complete the Cancer Research UK survey I posted and don't pull any punches about the delays you've experienced in treatment. I certainly haven't.
Thanks for your message. I'm glad you found the weekly taxol doable. That gives me hope. I tried the cold cap last week but found it unbearable. The combination of a surgical mask, my glasses, a hairband to protect my skin and the whirring of the machine gave me such awful claustrophobia that I had to have it taken off. The icy cold was awful too. I don't want to lose my hair but I couldn't stand that every week either.
I shouldn't worry too much about your unstyled hair.. I'm sure that there are plenty in this position at the moment during lockdown. The hairdressers will open eventually!!! I almost asked my dog groomer to give me the once over!!!!
Re my treatment, my team have always said that they would treat me when I started experiencing symptoms but that they would have to balance the benefits of the treatment against the risks of me catching Covid19 by going to hospital. My hospital admission and subsequent scan showed that the cancer was certainly raging on. I have completed the cancer research questionnaire and added in details of delay etc.
One thing I've just remembered about the weekly taxol, is that it affected my finger and toe nails. Evaux evonail is recommended in France but is quite difficult to get hold of here at the moment. I'd bought mine from a Dutch chemist. If you do try to buy make sure you don't by the cleanser which is just a cleanser and not really needed. I've heard on this site that dark nail varnish works as well so worth trying.
I had some Evaux from my first carbo /taxol treatments but didn't use it for weekly taxol as I didn't have any problems (probably because I was using it - Kristy recommended it). So, some of my toe nails went black so much so, that when my treatments finished and I went to Gozo, I wouldn't go in the hotel's indoor pool because it was so embarrassing. My finger nails weren't so hot either but not black at least. It took almost a year for things to right themselves.
Thank you for the advice about the Evaux evonail. I will certainly look into that but otherwise try dark nail varnish. My toe nails are a beautiful shade of teally turquoise atm
Oh bless you Siân, sorry to hear this lovely. Although poisonous stuff, glad you’re back on taxol which will hopefully work on the nasty disease.
You were one of the first to welcome me on this group 😊bless you.
I’m just about to finish my 2nd line chemo ( after 2nd debulking in January).
We all have our own journeys to take through this awful time but it’s so good to have the support from so many who understand what it feels like to have Ovarian Cancer.
Thank you for your reply. Yes it is poisonous stuff but luckily it does poison the cancer too!!! I hope that your treatment has gone well. When does your chemo finish? How are you feeling! You will be relieved when it is all over.
Hi Siân, not sure why I missed your reply but was looking to see how you’re getting on so have now read it.
Hope your chemo isn’t causing too many side effects & it’s doing it’s job?
I finished 2nd line chemo at the end of May. CT scan a month later showed NED 😊 I’ve been prescribed Niraparib & have been taking it for almost a fortnight now. I was very sick with it during the first week but that has settled down now ( I’m taking regular anti sickness which may be why - who knows for sure?!
Anyway, you take very good care please & hope you’re ok.
Hi Sian. I’m so sorry you’re in pain and the nasty cancer has been taking advantage of the hiatus in treatment but the taxol should get it under control, hopefully soon. Gentle hugs!
I, so sorry you had to be admitted to hospital in pain but it’s brought things to a head a little bit. It is good you have started the chemo, taking positive action kind of puts us back in control a wee bit, but, I’m so sorry you need more treatment and you’ve had growth in your cancer. I hope the taxol does the job for you and isn’t too difficult, I found weekly taxol much less arduous and easier to deal with.
Take care Sian, we’re all her for you, love and big virtual lockdown hugs ❤️Xx Jane
Thank you so much Jane for your positive message. Yes I agree, I do feel a little more in control and in a funny way pleased that I had a hospital admission or I don't think that they would have known that my cancer was growing. Onwards and upwards xxxx
Dear Sian, this sounds like an awful predicament you’re facing to say the least so sorry.
I had a similar experience last year just before my first recurrence. Although I wasn't experiencing any particular symptoms my CA 125 was steadying rising over 3/4 months from 7 to 9 to 11 to 36. Still being told it was normal. It was only when I was admitted to hospital as an emergency with a perforated peptic ulcer a CT scan showed a huge increase in grown of cancer. 3 tumours 12cm 10cm 6cm. The oncologist then decided I should start carbo/Caelyx . My CA 125 was 46. The chemo reduced the tumours by 2 thirds. I’ve been told the tumours are inoperable as they’re in a place the surgeon can’t get to, in the upper right and left quadrants. I’m now on my 5th week of Rucaparib. Blood tests were ok but CA 125 slightly up to 11 this week. More blood tests next week to check platelets, which have dropped a little. I’m telling you all this because I can’t remember why your tumours were inoperable and exactly where they were. I don’t know how long one can live with tumours even if we’re on such as Rucaparib or Niraparib to keep them at bay. Forgive me for this long saga. I pray your tumours disappear completely and if you do lose your hair you can embrace your new look. Easier said than done. X
Thanks for replying, it seems we all keep pinning our hopes on one thing or other. Hope you're coping with today's chemo. Have a decent night's sleep if you can.
Thank you for your kind message. You have certainly been through a lot. Your perforated peptic ulcer sounds like agony. It was good that they scanned you and started you straight on carbo Caelyx and that it has been so successful in shrinking the tumours. The rucaparib also seems to be doing the trick for you.
I had carbo Caelyx last year and then Niraparib. I started carbo/gem in January but my tumours were still growing at the half point CT scan so it was decided to start me on weekly paclitaxel. Then Covid19 arrived, everything was stopped and my disease progressed in 3 places on the liver and in the pouch of Douglas. Unfortunately I have too many tumours to operate.
This disease certainly takes its toll on us.
Thank you for your prayers. That means a lot. I will also pray for success and buy some snazzy headgear to disguise my thinning hair
Sending you lots of love and success with your treatment
Hi Sian, sorry to hear that you have been in pain and that the cancer is fighting back but hope that the weekly Taxol will hit it hard. These strange times make those hospital visits just that little bit more anxious but you are always so positive. You've got this. Sending a gentle hug. Nicola x
Thanks Nicola for your kind message. Yes there is quite a different atmosphere in oncology at the moment. I know it is keeping us safer but I do miss the camaraderie and the banter. Sending you a big virtual hug xxxxx
Like everyone else, I am pleased to see you back in treatment, but sad that your cancer got such a jump on you!
I was set to start Carbo/Gem two months ago, but the Covid put paid to that, until the cancer growth could not be ignored.
Now, I am starting it today. I can’t wait, although I am worried about side effects...
Weekly Taxol was hard on me. I had to have the dose reduced by 25%, which was a lot better, but it still made normal life impossible.
Losing my hair for the second time was harder than the first time, but if the regime works, it’s totally worth it, and I spent a small fortune on various wigs!
Pleased to heard you're finally getting back onto your treatment plan. Good luck with it and I hope that side effects are minimal. Best wishes. Gwen xx
Dear Laura, so happy you’re starting chemo again today. It can only be a good thing. I really hope you’re cancer disappears completely this time.
I’ve just Replied to Welshandproud (Sian) about my latest news. Perhaps you could enlighten me on some of my queries. One worry after another for us all.
I'm so pleased that you are starting chemo again. This covid19 has certainly affected so many of our treatments but it looks like things are starting to pick up again. I wish you all the best with carbo gem and hope that it does a number on the cancer cells without giving you nasty side effects.
Do you have any recommendations for good places to buy wigs? I bought one last time but didn't really wear it as I didn't completely lose my hair. It just went very thin. So I'm going to have to think about it again. I would be grateful for any ideas
Sorry to hear that you had an emergency admission but pleased to hear that they were able to give you chemo.I hope that this makes things easier for you and the pain subsides.
Thank you so much Ann. Yes the emergency admission wasn't pleasant but I really don't think that I would be back in treatment without the CT scan they did. So every cloud has a silver lining. I hope you are keeping well at the moment. Sending you a big virtual hug. Sianxx
Sorry to hear you had to be admitted to hospital re pain but pleased that you are now back on track with your treatment plan. Good luck with it. Gwen xx
Hi Sian--sorry you had to go back to chemo but it sounds like it was time of course. I am on weekly taxol and every other week Avastin and my ca125 was 1400 when I started and after one cycle was 688, then kept going down for awhile. Now, it looks like its creeping up while I am being treated so a third treatment was added (chemo in pill form--Cytoxan) which my onc said can enhance the effects of taxol as well as work on its own (usually with Avastin). Wishing you all the best and sorry about the hair. You have a beautiful face so choosing nothing--or whatever--on your head will look beautiful on you.
It sounds like you have had a hard time of things. I'm pleased that the weekly Taxol has had such a lowering effect on your Ca125. My levels are 428. I hope mine can drop too. I'm afraid I can't have Avastin because it gave me severe arthralgia when I had it as part of a clinical trial as frontline treatment and it was stopped after 11 sessions. I did manage almost 2 years remission afterwards though which was wonderful. I haven't heard of Cytoxan before. How does it work?
Thank you for your lovely compliment. I don't feel like my face is beautiful at the moment but I intend to rock the bald look, whatever it takes!!
Sending you lots of love and a big virtual hug with all the very best wishes for your treatment. Sian xx
I’m so sorry that you’ve been through that awful experience and all that pain.
It’s great that you’ve started treatment now. You’ll have had your second week of Taxol by now. I hope that it’s not a very tough regime and that the after effects don’t linger for too long.
Yes I had my second dose yesterday. I've been high as a kite today on the steroids and got all my ironing done. I think I might be sleeping a lot over the next few days!! Sending you my best wishes too. Sianxx
Good to hear from you. I've had 8 doses of taxol now and hope to have my scan this week. My ca125 has come down quite a bit do I'm hopeful that the chemo is working.
Yes this Coronavirus is not good news for anyone with medical conditions. It's scary stuff 😨
I’m sorry to hear this, Sian. I used the cold cap for my first chemo but couldn’t face it for my 2nd line. The threat of Covid-19 is an added complication.
The best of luck with your treatment. Be as kind to yourself as you possibly can.
Thank you Anne. I really couldn't stand it but I haven't lost all of my hair yet. It's just much thinner so I've had it cut short and it looks better. I hope you are doing well 😘❤️😘
Sending positive thoughts to you. Was in remission for 18 years but its back. In my sternum and liver. Started my first chemo two weeks ago. Finding it hard to accept. Ordered wig feel more upset this time about losing my hair but also whether this treatment wi ll halt it for some time. Good luck lovely lady
That’s tough. You had an absolutely amazing period of remission but it’s a big shock to have it back now. It is upsetting losing your hair. I was like that last time but actually got over it very quickly.
The very best of luck with the chemo. Be really good to yourself and do things you enjoy on the days you’re able. Put nice things in place for yourself to help you through the chemo. Keep strong 🤗🤗🤗🤗🤗
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Bowel blockage 6 months post chemo
It’s back!
Cancer Coming Back!! Please give any advice on Weekly Taxol.
been on the back burner a bit 
