Hi Ladies,

Thank you all for such a lovely welcome, your kind words, advice, and for sharing your experiences. It is very helpful, and I hope that I may be able to help some of you too by sharing our experiences. I may not always be prompt in responding, but I will try to respond whenever I have a bit of free time (I don't get much of that at the moment).

@Dot - I wonder if it was the Japanese regimen that you had, it goes as follows: Cycle 1, week1 - Taxol for 1 hour, Carbo for 30mins, weeks 2&3 - Taxol only for 1 hour. Then Cycle 2 starts on week 4 (same as week 1) and so on for 6 cycles over 18 weeks. I wonder why they don't spread the carbo over 3 weeks also, i.e. 10mins per week. Logically it seems to make sense that your body would be able to cope better than being bombarded for 3 1/2 hours every 3 weeks! For example, if you had a need for pain killers and the maximum dose was 8 in 24 hours, you wouldn't take them all at once! But I guess they know what they're doing.

@Dot, Sarah & Jackie - Thank you for the reasurance regarding PICC lines, it sounds like the best way to go, my wife has another week or so to consider it.

@Sarah - Don't ever feel guilty about your boyfriend having to cook your tea! I do it every day and don't mind in the least, I'm sure he doesn't mind at all either.

@Eileen - My wife had her surgery before starting chemo, I know some have it the other way around as you did, a little confused about that but I suppose it depends on individual circumstances. My wife had a huge ovarian cyst, so the surgery needed to be done first. She has been quite lucky so far with regard to side effects but appreciate that things may get tougher as it builds up. I will invite her to come and chat to you all but I think it's unlikely, she'd rather let me waffle and let her know what people say. Thanks for starting this thread and for introducing me to everyone .

@Sarah & Sharon - I hope that you cope ok with the hair loss. My advice would be not to get a wig through the hospital, but go to a specialist shop and try some on. The hospital asked my wife to choose 2 wigs from their catalogues, then she could keep whichever one she preferred. The hospital will have a list of shops that will supply NHS wigs, private wigs, or both. There is no way you can choose a wig out of a catalogue! you may get lucky but it is a real gamble. My wife had a lot of fun trying lots of different wigs on, some that looked perfect for her were actually awful when she tried them on, so I would stongly advise not to start the process with the hospital, as you then do not have the option of getting a free NHS wig elsewhere. Good luck!

Best wishes to you all, and thanks again,

John

Hi John,

The reason I had my chemo before the surgery was because they couldn't get to the tumour. It was 6cm and they said about 2 cases a year come through like mine so they wanted to shrink it as much as they could before operating. It was pressing against my bowel so they thought it could have been attached itself to it. The surgeon refused to do it at first even though it had shrunk to 1cm, anyway I asked again and after looking at the scan he decided to.

The chemo afterwards was to mop up as they call it...

  Take Care and thank you for your message. Eileen xx 

Hi John

I had the premed which lasted roughly half hour (to prevent sickness etc)..... taxol for an hour then the carbo for an hour or vice versa lol. It was still an all day process, I would go every week for 3 weeks then a week off, so it does sound different. The side effects were slight then, which was such a relief.

I hope that makes sense lol.......seemed a long drawn out way of explaining it.

Take care Dot

Hi Eileen & Dot,

Thanks for explaining, we're still learning about all this but it seems that it's not a one size fits all scenario with regard to surgery and treatment, which makes sense I guess. But it's great to be able to compare notes with you all.

With regard to side effects, and I know it's early days to be talking about how good my wife feels atm, but you may be interested to know that she has been taking a liquid iron formula made by Floradix (other brands available). This stuff was mentioned by her oncologist at her pre-chemo appointment, he said that many of his patients were reporting a good response to treatment while taking this. Now I know it's all subjective, but it may be a contributing factor as to why she is responding well for the majority of the time. She started taking it a week or so before treatment, and she seemed a lot brighter and livlier after about 6 days. Just coming to the end of her second bottle now, and I don't want to stop giving it to her because I'm kind of pinning some of our hopes on it.

I have talked about this a bit more in my thread if you're interested.

@Dot - When they told my wife about the treatment they were recommending, we were initially told 3 weeks of treatment, then a week off. Then later they contacted us to say it is infact every week without any breaks. So it is clearly quite new in the UK and they were getting it confused perhaps with the treatment that you received.

Best wishes,

John

Hi John, I was diagnosed in 2008 with cancer in both my ovaries, and the same as everyon else was really scared of what was to come, the not knowing is the worse thing.I had a full hysterectomy, Oopherectomy and removal of the omentum, (in short they removed my womb, ovaries fallopian tube, cervix and the fat layer between my bowel and stomach) followed by 6 sessions of chemo.

The nurses in the chemo unit were very good, they explain in detail what would happen and the possible side effects. I had carboplatin and taxol. Not everyone has the same side effects, on speaking to the other ladies on the unit we found that some had mouth ulcers, others had really painful joints, sickness, extreme tiredness. Nerve damage from the taxol in hands and feet , (loss of sensation and pain) also sickness. we were given medication to combat these side effects by the chemo unit each time, before we left the unit. i had my chemo every 3 weeks, depending on my blood results in between each chemo. I would take steroid tablets the night before and the morning of my chemo session. Then when i got there they put a canular in and gave my a type of premed anti sickness more steriods etc, before they gave me the carbo & taxol, it took about 6 hours to complete then I would go home with my meds till the next one was due.

Some people had 1 of these side effects, others had 2 or 3, I my self had all of them except mouth ulcers, I did loose my sense of taste, this came back slightly in between each session. My hair started to fall out just before my 2nd chemo, I had been and ask my hairdressers to cut it really short before that, so it wouldnt be so much of a shock. Then when it started to fall out it got everywhere, in the bed all over my clothes, so asked my hubby to use the electric shears to shave it all off. At first I didnt want to look at myself, then I thought about it and decided that it was best to get it over with. I was given my wig before my hair fell out and it was a pretty good match for my own. I chose to wear bandana's in the house, as it made it easier for other people. for myself it didnt bother me as I saw it as something that had to happen, if I wanted to still be here in a couple of years time, almost  a badge of honour and nothing to be ashamed of.( hope that doesn't sound stupid). Also its amazing how much you save on shampoo and hairdressers ha ha.

When I was at my worst from the chemo ( usually 3 days after my session) I would take myself to bed, and sleep a lot, take the painkillers for the joint pains, and the anti sickness pills. All I asked of my hubby was to pop up now and again to see if I needed a drink or anything else, other than that i just stayed in bed till it started to wear off. I had to have a blood transfusion after my last chemo, as my blood levels had dropped too low.

One thing you have to be careful of is anyone coming to see you while you are having chemo, who might have an infection as your immune system is really low. I caught an infection and had to go into isolation at the hospital for a week, in the middle of my treatment.Having said all that, it is now 3 years in May since I was first diagnosed. I am still here with my family, having seen the birth of a new granddaughter, and about to see my other granddaughter get married in July. I think that a positive attitude goes a long way to helping you get through the treatment. I decided right at the beginning that I wasnt going anywhere. so they could throw whatever they had at me as long as I got better. Even the hair loss, its only hair and it will grow back. I have permenant nerve damage (neuropathy) in my hands and feet from the treatment, but its small price to pay for my future.

The best advice I can give you is talk to your doctors and nurses if you have any worries, no matter how small, also the McMillan service is second to non, they help with benefits and advice they are brilliant.

I wish you and your family the very best of luck on your journey through cancer, and a happy healthy future, dont give up the fight.

Love and best wishes

Ann

xx

Hi Ann,

I have just read your post and have found this extremely helpful. I too had tumours on both ovaries and had everything removed, including the omentum. At 33 this was a massive blow as we haven't any children. I've just started my Chemo on Tues. I have had exactly the same effects 3 days after treatment. I suddenly felt like I'd been hit by a truck. Pains up my legs & my joints aching was the worst - like you I just took myself off to bed in the end.

But today I feel better again it's strange! Does this mean the effects only last a few days then your ok till the next one? I know everyone is different.

Sarah x 

Hi again Sarah & John

Ann hello to you... I have remembered also and not sure if any of the other ladies have put on site that you need to drink lots of water and I mean lots....

I also had bad aches in my legs and have been left with neuropathy in my toes. But it is a small price to pay... Also my temperature never went up so I never knew I had an infection. So if you feel like your getting a chill then don't hesitate to ring the hospital....

Good Luck Eileen xxxxxxxxxxxxxx

Sarah,

Don't worry too much about too much about the neuropathy as not everyone gets it and mine is not as bad as it was. 

I also had severe heartburn / indigestion but I never lost my appetite or was sick ( only felt sick ) so you may not get any of these things... 

I always say there are a lot worse things to get than cancer and we always have hope as long as we stay positive..      

  Keep in touch Love Eileen xxxx       

Hi Ladies,

Just read my last post back and it sounds like I'm a sales guy for a particular product! Sorry if it sounded that way to you but I assure you that I am not. Just trying to help back by sharing what seems to be working for us. Just ignore me if I start waffling, but it's not easy being the only guy in the village!

Speaking to all of you on here kind of reflects the attitude of most patients at the hospital, and my preconceptions and ignorance about cancer before all of this started have been totally blown out of the water!

@Ann - Thank you so much for taking the time to post a message to me, it's good to hear as many stories and experiences as possible. Although my wife may not experience all of these, if she does we'll know it's normal.

Mary has to be particularly careful as she also had a splenectomy, and the spleen is part of the immune system. So she has to take low dosage penicillin 4 times a day, whether she's on chemo or not. And we always have a course of anti-biotics handy incase she gets an infection or a cold.

As for staying positive, you're right. it may sound trite, but never ever underestimate the power of positive thinking! I know it's easier to do when you're feeling good and not quite so easy on the bad days, but I think it's very important. And the support available, both professionally and from fellow patients is just brilliant!

@Eileen & Sarah - WATER!!! what's all this about water!! nobody told us about drinking lots of water so we've been getting stuck into the vino!

Best wishes to you all,

John