I'm going to be moving back to Manchester in a couple of weeks and I'm waiting for an appointment from Christies in Manchester.
At the moment I feel really good and because I'm bot working it even feels a bit like I'm on holiday. I will be having chemotherapy and I was just wondering about people's experiences with chemo and the effect it will have me. I'm worried about not being able to do the things I currently enjoy doing like running and also the impact it will have on my sex drive.
Christies is such a good hospital and there will be excellent support there. I didn't have chemo, so can't help you. Try looking at The Ovacome website to find info sheets on chemo and its effects, or the Penny Brohn Centre website about complementary ways of supporting your system. They are very good. All the best
Wendy xx
Thanks but I am looking for stories about people's experiences an info sheet will give with a medical perspective (I've been give some information by MacMillian) but I am interested in that personal perspective.
I had 6 cycles of chemotherapy. The first thing to say is that 'chemotherapy' is simply a generic term for the administration of chemicals in oncology, and so it's worth emphasising that an individuals' reaction will depend upon their health/fitness/age/ etc AND the chemicals administered, and how.
I was given lots of written info about it in advance, and encouraged to take part in a couple of drug trials. Perhaps selfishly, the big considerations for me were what I could get the most benefit from for the least risk. They can give chemo intravenously; in pill form; or straight into the part of the body where the cancer is. In my case I was told I was to have carboplatin and taxol in combination , with steroids and other drugs to help my system to accept the poisons intravenously. I refused the taxol and the trials. I was aware from a friend that the taxol can leave some lasting nerve damage and on questioning my somewhat bemused Oncologist admitted it did 10% of the benefit for 90% of the damage. He was amazed that I wasn't grabbing every chemical they were wiling to pump into me - but we have a right to information and to make our own decisions; and I was convinced that my surgery had removed my tumours.
My chemo was every 3 weeks. It took about 3 hours, but there was often a wait whilst the wrong stuff was sent, or something else went awry. It was a horrible experience; but not as debilitating as I expected. I didn't have much sex drive anyway, after my surgery and the shock, but it didn't stop me exercising - I have horses and play tennis. I was increasingly tired and the worst part for me was managing the constipation from the first couple of cycles until I got it right. I took immune system support, so did not succumb to infections. I became anaemic - and am still slightly so 21 months on - but I'm vegetarian, so that might not help in that respect. The effect was definitely cumulative - so each treatment becomes harder to bounce back from.
I was persuaded to take it as 'an insurance policy'. I suppose I'm glad I did - but it's not something to do lightly.
I doubt this 'helps' but you did ask!
Best of luck and good wishes for all the decisions you make!
Isadora.
You are wrong Isodora it does help to know what I will be facing and you have probably confirmed a decision I was already considering. I completely agree with you about getting the most benefit for the least risk. I will also be having carboplatin and have been offered taxol as well but I have been advised this will only provide an additional 2-3% of benefit. I knew about the hair loss and the was told about joint pain but not about any long last nerve damage.
Much of what you have told me I was advised by the oncologist I saw a couple of weeks ago but of course she couldn't give me that personal perspective. I suffer with constipation already and have only recently got that under control. I did ask about complementary therapies the oncologist I spoke to was very dismissive and made some reference to massage and pampering - its like she didn't accept that diet can play a big part in supporting your immune system - is this common?
At the moment I dread the way medics look at me with a mixture of grief and pity. Whilst I am packing my life up to return home it feels a little bit like I am on holiday and I'm starting to dread when I go home because I know everything will change.
"I did ask about complementary therapies the oncologist I spoke to was very dismissive and made some reference to massage and pampering - its like she didn't accept that diet can play a big part in supporting your immune system - is this common?"
I'm afraid it is my experience, as well! However; I suppose when you are working in an oncology dept. you see the acutely ill and recurring cases day in and day out, and it is hard to be aware of others. Add to that the power in political and financial terms of the drug companies, and it is not surprising that drugs become seen as the only important factor. Interestingly, despite being a counsellor myself; I felt very angry about being offered counselling - not because I didn't need it (I have a regular counsellor/supervisor, anyway), but because it was offered as a (or in the same breath as) pampering - and that made me angry. The health service has rather a patronising relationship with the other routes: and one that doe nothing to make you feel powerful or able to take control.
I'm sure I've written this before, but if you haven't already; take a good look at the work of Dr David Servan-Schreiber: /anticancerbook.com/
Isadora
Hello,
I had 6 cycles of Taxol and Carboplatin. For the most part I tolerated the chemo well, but did struggle with the steroids (used to support tolerance of the chemo I believe). They made me a bit hyper and I spent a lot of time up in the night which was not good but the doses were tweaked and that settled down. The chemo did affect eating as your tastebuds all go funny! Tummy can be sensitive too, bowels do seem to slow up a bit but I would say keep hydrated. I found the effect was cumulative so by the end I was pretty knocked out by it. I still cycled as usual (with my little boy on the back). Sex was not really of interest to me at the time!!! (just had hysterectomy and you do feel a bit rough and it can be uncomfortable). Your skin can become sensitve and dry so I tried to look after myself that way too. I ate a lot of icecream and really preferred eating very bland stodgy food like white bread and pasta.
Taxol has not left any lasting damage as far as I can tell although I do wonder if I have lost a few brain cells as I am a bit scatty (perhaps it's just me!!) I am still very active doing yoga, cycling etc etc so all in all not too bad.
I never questionned having the chemo - I wanted to get the best possible treatment I could. I wanted to fight it tooth and nail (blasted horror that it is.). This active aggression towards the cancer was what kept me feisty even on the low days.
I wish you well with your treatment and hope this has helped a little.
Jo
Thank you for sharing your experiences Wendy. I hope to be able to continue running through treatment obviously I will have to be sensible but I've already cut back my mileage and pulled out of races.
I want to fight it tooth and nail as well but taxol seems to offer very few benefits that I'm not sure the risks outweigh them.
I had surgery in July and it didn't go well at all, when i was opened up the surgeon found that the cancer had spread too much for them to remove any of it so i was stitched back up and told that i would have chemo 2 weeks later. The dr's decided that i would have a combination of Taxol and carboplatin. On the first cycle within a minute of starting the taxol i had a severe reaction, when i eventually came round i was told that my reaction to the taxol was so severe that they would not even consider trying the drug again, at the time i was mortified, i didn;t know how this would affect my treatment, if i wasn't getting both drugs i thought my chances of getting through this would be much lower. In hindsite i am kind of glad i had the reaction as everyone i know who has had taxol has had a really hard time on chemo.
The first couple of cycles were pretty horrendous, i think more so because i hadn't had time to recover from surgery. I found that as long as i had the constipation under control i felt ok and i had to change to stronger anti sickness drugs. For the first week I felt physically exhuasted which was really hard to cope with as i'm usually quite an active person but after the first week i was back to my normal self although i did have to have a couple of blood transfusions during 8 cycles of chemo. The biggest thing i learnt was to listen to my body and not to push myself too much. I did lose my appetite but made sure i ate just to keep my energy levels up and i think this helped. Also had a very sore mouth but found that if i used the mouthwash i'd been prescribed this would clear up in a couple of days.
I had a second op on Jan 18th and this time it went fantstically well, they managed to get all visible signs of cancer out and i had two more cycles of chemo after this. I did find that the last cycle was more exhausting but 4 weeks on i am a bundle of energy and feeling fantastic. For someone who didn't think they had a hope in hell i have been given the all clear and have my next check up in June, Hope everything goes well for you, keep positive as i think this is half the battle, good luck
Taxols (DOCETAXEL AND PACLITAXEL) are serious drugs with awful side effects. They can work but I found Oncologists here in South Africa are not happy to deal with their side effects and treat side effects like minor colds. I have been through a 6 course treatment for angio sarcoma in the left cheek. After initial treatment the swelling on the face reduced and I felt that this stuff works. Two months after the chemo I noticed the swelling growing again and now the Onco wants to do radiation treatment. But hold it the side effects of the chemo have not gone - he says maybe they will never go! Huh. Anyway have gone the diet (GI and where possible sugar free etc). The country is also hoping for Cannabis Oils to be made legal - they say they have good results but is that also the same as chemo and radiation - a Lotto on your health. Do you want to take a chance? Keep positive whatever you decide.
I had 6 rounds of Carbo-Taxol in 2009-10. Initially, I had some temporary nerve damage from the effects of Taxol but when the dose of Taxol was reduced by 25%, the nerve problems subsided and then resolved.
Given that you suffer with constipation already, your priority is to make sure that you are ahead of the game in this respect. Before each session of chemotherapy, a pre-medication is given and one of these drugs (Ondansteron) can cause severe constipation. I would recommend taking Movicol for constipation. This is the drug of choice, recommended by most oncologists. I started the night before each session and took 2-3 sachets daily. I wish that someone had given me this advice beforehand as so many ladies are hit by terrible constipation problems which of course affects the appetite at a time when it is important to keep up your strength. Keep well hydrated, at least 2 litres of water daily.
The high dose of steroids, also part of the pre-medication, can lead to sleeplessness. In fact, for 48 hours afterwards, I felt like "superwoman" and then "crashed" when the effects wore off.
About 48-72 hours after the chemotherapy, the worst of the side effects can set in. This is when bone pain starts, but it helps to keep active if you have the energy. Have adequate pain killers at hand.
Five days after the chemotherapy, you will find that you start to recover in preparation for the next dose.
The best advice that I can give you is to try and stay ahead of the problems. It took me until round 3 to have the right strategies in place and this was because the nurses were too guarded in their advice when I needed complete honesty!
Best wishes
Isabelle Cadbury
Thanks for all your replies - my nanna used to use movicol and so does one of my aunts because there were/are on morphine. I'm not suffering with constipation at the moment as I'm taking a cocktail of soluble fibre supplements and a laxative called lacutulose. I'm used to dealing with constipation usually as I've had IBS since my 20s but I knew something was wrong when my usual methods weren't working then I really bloated out.
I had the taxol too as I just wanted to hit it with what ever I could and had a bit of pins and needles but not permanent thank goodness. I was monitored for this anyway after each session of chemo and dose slightly reduced if needed to be without losing efficacy. Yes Chemo is scary but is also very do-able and really what is the option! Make sure you get the right care, ask questions, all the answers from the ladies above are excellent and in their own way add to the bigger picture, they are all "success" stories in their own way just to get through this is an achievement, theres a lot of living left to do! "
You said "At the moment I dread the way medics look at me with a mixture of grief and pity".
I felt that too but realised they dont have all the facts about YOU and some are not as well informed as they should be. They hear the "C" word, the pitying looks come out and immediately your fighting someone elses perspective on this which is often outdated. A tip about the steroids( usually given for 5 days after chemo session) I was told by the Onc to take the 4 tabs( Dexmethosone in my case) all in one go at breakfast instead of spreading out through the day and that ,meant I wasnt hyper at night time. used to pace the house looking for cleaning to do ! That is not me! Take the Movicol definitely and lots of water/ 2 litres a day will help flush the toxins through you body and really helps.Re sex drive, am afraid that was the last thing i felt like after the trauma of diagnosis, major surgery , then chemotherapy but the good news is it does come back!
I dont deny Ive had this experience but life is too full and we are all busy running homes/ families to let this dominate us. I found some counselling helped but again you have to find the right person for you.
The best advice I can give is its your body, your life,stay on top of your physicians, question things till you have answers you understand, get this over and then LIVE IT!
ALL VERY BEST
LYNDY
PS thank you again ladies above for sharing your experiences, it helped me too!
I suppose ever since diagnosis I've wanted to do as many 'normal' things as possible before treatment starts and I don't know if anyone else can relate to how I feel but because of where the cancer is or started from I felt 'unsexy'.
I have an appointment at The Christie on Thursday
Chemo affects us all differently - not saying it is easy for anyone. Be prepared for the side affects they suddenly appear -3 to 4 weeks into treatment. Mouth sores, taste buds go for a leap, cellulitis in arms and legs etc. Be on good nutritional and dietary supplements and be prepared for unexplained bouts of lethargy, imsomnia etc. After all this to watch out for - there is always the chance it may not work or, it gets spread around the body for chapter 2. It is worth risking the side effects to get shot of the cancerous growths though. Best of luck and keep your oncologist informed of all difficulties - by SMS or calls.
I posted this 7 yrs ago. I have had three rounds of chemo since I made this post
So what did you opt for? How did you deal with the side effects? Did you ever get Cellulitis in legs and arms/hands? You are obviously a survivor and well done for hanging in.
Never had cellulitis. Just took laxatives and my anti sickness meds. I have a slower growing form of ovarian cancer. You do know this is a support group for ovarian?
ScardyCat40 - yes I know the support group is for OVCAN. Once I got on I could not change to another support group. However the effects of Taxols whatever form of C you have will impact your life. I just found the side effects were inconsistent, unpredictable and the Onco not always empathising with side effects.
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