Hi Redlizzie

I to have ovarian cancer diagnosed in Jan 2009. I had 3 lots of chemo, operation, and another 3 lots of chemo.

The main problems I had with the chemo were gross taste in mouth and nothing tasted like it should, neuropathy of fingers and feet, these got worse with each chemo, but taste improved after about 6 weeks, fingers and feet improved but I still have neuropathy in my left foot (and right but only when I walk!). Hair loss - very slow to grow back and now have corkscrew curls! Tiredness but only realised how bad once I returned to work!

Most of the complications I had with chemo have been rare ones but then I only got diagnosed with ovarian cancer due to a rare autoimmune disease! I developed arterial bloods clots (aortic settling in left Femeral artery) just before my 4th dose, had daily blood thining injections but still developed another clot 5 days after the 6th dose! The onchologist/haematologist aren't sure if its cancer or chemo related and they don't seem to have personally come across it before so please don't worry about it!

I would be interested in hearing about plans for followup when you get that far.

Best of luck

Jackie

Jackie,

I am worried about you as I have not heard anything from you and the other Ladies..xxxx

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

Hi Eileen,

Thanks for that you just reminded me to go get a glass of water! I am so rubbish at drinking water.

After reading yours and Anns post I am getting slightly concerned about permanent nerve damage in my fingers. But as you have both stated it is a small price to pay. I'm also finding constipation is a big problem.

Anyway hope you're well,

Sarah x

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

Hi Sarah

mention the neuropathy at your next chemo appointment, if they think it is bad enough they will decrease the dose slightly. I had bad neuropathy in hands and feet during my first lot of chemo (6 doses) the hand disappeared as soon as it finished and the feet were improving slowly when the cancer returned. Second time they gave Doxil instead of Taxol and it was better though still worse than it had been. I finished chemo oct and the neuropathy is gone except in my left foot. To be honest you do suprisingly get used to it!

As for the other symptoms you can get, as far as I can tell the ones you have after the first dose are the same u'll get right the way through. Generally the first week is the worse the second improving and if your licky you have a good third week before you start again. The tiredeness seems to be accumulative but do what you can when you can! this is a good time to listen to your body but make yourself do something little each day - I drive to costa coffee each day had have a coffee and read my book for an hour, sounds daft but it gets me out, fresh air and a little walk works for me lol

constipation needs sorting, are you taking pain killers? if so these have that effect so best speak to a dr. If not, something like milk of magnesia should do the trick

Hope that helps a bit. Above all keep positive and whenever possible cheerful. I'm sure the endorphins produced help!

Keep us posted as you can see we are a friendly lot lol

Jackie

xxx

Hi cub dear, i am sorry to hear that you hadn't had time to have a family before all this happened. I was 56 when I was diagnosed, and had my children when I was fairly young.

As to you question about the length of time for the symptons, each person is different, most of the people who had their treatment with me had very little, some even went on holiday during theirs. I already had angina so it hit me harder. I really didnt leave the house in 9 months except for hosptial visits, as the pain in my feet made it extremely difficult to walk. I used to have my chemo on a wednesday or Thursday, the effects started on the Saturday. I was in bed for at least 3 or 4 days. Then I would start to feel a lot better by the following Saturday, then I would have a week of feeling not too bad, then the chemo again the next week.

The nueropathy in my hands and feet is a bit better, more so in my hands, unless I over do things then they ache. But the chemo damaged the joints in my feet, and destroyed the soft tissue under the soles of my feet. This has never recovered, but I still get about as I wear hotter shoes, they have a lot of padding in the bottom of the shoe which helps, I also put on a lot of weight from the surgery and the steroids, I had to pack in my job which didnt help as it meant I was very inactive. I have since learned to swim to help with this as in the water I am almost the same as everyone else. I joined a slimming world group and have up to now managed to lose 3 stones, I feel very well. I only mention the weight as no one told me the surgery could have this result. Most of the ladies I had my treatment with made a full recovery, which is what I sincerely hope for you. So just take each day as it comes, talk to your doctors about your side effects, I had  constipation and thought that all I had to do was take a laxative, but the chemo used to stun my bowel so it stopped working for the first week after the chemo then would start to work the second week. I only found this out by talking to the nurses and doctors, so it doesnt matter how daft you think the question is please ask them, as non of us has been on this journey before so we dont know what to expect at first.

I hope you treatment goes well and that you are one of the lucky ones with few side effects.

Take care and god bless

Ann xxx

Hi Jackie,

Thanks so much for your advice, I'm going to mention the neuropathy tomorrow, the hospital are phoning to check up on me. It's definately getting worse in my fingertips, but thankfully nothing in my feet as yet. I'm glad you mentioned about the pain killers as I have been taking them. I've got myself a bottle of lactulose now so hopefully that will help.

I managed to go to work this afternoon though for 4 hours. Tired me out big time, so I'm vegging in front of the tv now! I was amazed when the nurse told me I would only be able to work 12 hours a week max, but now I realise she was right!

Anyway take care,

Sarah x

Hi Jackie,

Thanks so much for your advice, I'm going to mention the neuropathy tomorrow, the hospital are phoning to check up on me. It's definately getting worse in my fingertips, but thankfully nothing in my feet as yet. I'm glad you mentioned about the pain killers as I have been taking them. I've got myself a bottle of lactulose now so hopefully that will help.

I managed to go to work this afternoon though for 4 hours. Tired me out big time, so I'm vegging in front of the tv now! I was amazed when the nurse told me I would only be able to work 12 hours a week max, but now I realise she was right!

Anyway take care,

Sarah x