Had a radical hysterectomy 6 years ago for cervical cancer, followed by radiotherapy. As a result ended up with lymphedema in my legs (think this is slight) and also episodes of cellulitis, I also suffered with diarreah. Last week a scan revealed that they suspect Primary Peritoneal Cancer - I am now awaiting a biopsy. I have been told I will receive 6 sessions of Chemo - one every 3 weeks for 18 weeks either a 2 hour or 4 hour session depending on outcome of biopsy. Is there anyone out there who has had this - I know everyone responds differently depending on drugs used - will I lose weight, lose my hair, will I be tired from one session to the next, will I become more susceptible to illnesses which may be going around. I know these are questions I need to ask the oncologist but it would be nice for others to let me know how they responded. I am new to this site, I am 60, married with 2 daughters, 5 grandchildren and a chocolate Labrador. I would appreciate any help.
Chemotherapy - What can I expect: Had a radical... - My Ovacome
Chemotherapy - What can I expect
Hello, sorry you're having such a rough time. With chemotherapy, side effects vary depending on each drug, and not everyone gets them. Whether you lose your hair depends on the drug. you dont with all of them. its worth asking about cold caps, as i gather this can prevent hair loss.. About the only common thing is that about a week after chemo, for approx a week, your immune system is low. This doesn't mean you will get every cold etc around, just that you may catch them easier and if you do it may be more serious. I am on my 3rd different chemo, and have only actually had one cold in that time(I have a teenage daughter). The trick is to take sensible precautions, ie tell people not to visit if thy are ill, and if, for example you husband gets a cold, basic hygiene is important(I banished my husband to the spare room when he went down with one during chemo, and I didn't get it!) your oncologist should give you a leaflet about he particular chemo you will be on, which should give you the common side effects. If not, the Macmillan centres in hospitals usually have them.
Hope this makes sense, I'm having problems with predictive text, and might not have spotted all the howlers!
All he best
Chris
Hello joy, sorry you find yourself going through this but you have come to the right place for help and support. There is such a wealth of experience and knowledge on this site and there is always someone to talk to. I finished chemo in January this year. I had six lots, one lot every three Weeks. I was treated with two different chemos, carboplatin and paclitaxol.
I was very scared before I started but got lots of support from the ladies on this site. It was true what they said, that it was fear of the unknown and whilst it wasn't a walk in the park, it was doable. I lost my hair (due to the paclitaxol, not all chemos cause you to lose your hair), felt a bit sick ( but they give you lots of anti sickness drugs and steroids beforehand that really help), generally felt unwell and very very tired (couldn't even brush my teeth) . However, these side effects (apart from the hair loss) were worse in the week following chemo. By week two I started to feel a bit better (and this is when your immune system dips so you're more prone to infection etc) and by week three I felt almost back to normal, just in time for the next dose. I must admit that the more chemo I had the worse the side effects got, this is because chemo has a culmultative effect but at no point was it unbearable.
Of course, everyone is different like you say and every bodys experience will be different but the doctors and nurses are very good and very understanding and there are lots of things they can do and give you to help you through it. Just remember you're not alone, we've all been where you are now (and quite a few ladies on here have had chemo many times) and we know what you're going through.I hope things go well for you, please let us know how you get on and if you need to"talk" there is always someone here to listen.
Love and best wishes,
Lisa xx
Thank you Lisa I am so glad you replied, I am prepared for my hair loss, I have always worn my hair short, so I don't think it will worry me too much I may even dye it purple or green when it grows back - we will see. But the support has been terrific for me on this site - I have had 3 replies, other sites I have heard nothing from - I will certainly keep in touch and let you know of my progress. Once again thanks for the support
Joy
Hi there Joy .. I too have PPC and followed the same treatment path you've been set. Excellent advise above from Chris and Lisa so won't go there but would like to send you all good wishes. X
Thanks for replying Tina. Before you started your treatment were you in much pain in your abdomen, sometimes for me the pain is excrutiating and the rumblings in my tummy and bloatedness, did you find certain foods started it off, and if you did suffer with the pains what worked best for you - I don't like to take pain killers but sometimes it is necessary. Once you started your treatment how long was it before the pains subsided. At present I get good days when I feel perfectly fine with no pains then suddenly I get one day of pain.
Joy
Hello Joy Side affects can vary very much from individual to individual. I have had chemos for inoperable ov/ca and peritoneal ca since beginning of 2009. Carbo/Taxol not too bad. After few lazy days, life goes on. Paclitaxol does cause hair loss, but a cold cap usually prevents this, but hair may thin a little. You might be/feel a little sick but you are usually given steroids for a day or so and eating is not a problem. You will be very well monitored by blood tests. If you need blood or magnesium etc. you will be given it so do not worry too much about your immune system. However, I admit to being fanatical about my hands, and doing a detour and holding my breath near a sneeze and have told visitors not to come if they have a cold. I think I have only had one cold since 2009. Its not as bad as you would think, a necessary evil !
Don't worry!
Jen
Hi Jen, thanks for replying - I feel so much better with the support that I have received from this site, I only posted last night, it is such a comfort to know that other people are reading my post and taking the trouble to reply - I will keep you posted as to how my treatment will be going. Thanks again.
Joy
Hello Joy
Yes, it does seem to affect people differently. Funnily enough, there are quite a few people like me who found the hair loss to be a blessing in disguise. Not that I wanted to lose it but it did save time and effort when I was feeling exhausted. A quick shampoo of the scalp then slap on the glamorous wig (my hair never looked so good) or the scarf if I was having a "comfy day". And my legs were nice and smooth.
My first chemo was the worst but after that they gave me stronger anti nausea tablets which helped. It is important to report any side effects like this as they can sometimes be eased. For subsequent cycles I usually felt ok the day following the chemo, then it would start to kick in towards nightime. I would then feel like a zombie for three days and not able to sleep or eat very much. On the fourth day I would wake up and feel very weak but know that I was on the mend. After that I would gradually feel better and better.
My appeitite was a bit up and down. I did develop some strange cravings for things I hadn't eaten for years. Dairy Lea triangles, peanut butter. If your appeitite is small, tiny portions containing lots of calories are good. (The opposite of the usual health advice.)
Hoping that it won't be too bad for you. Plan lots of little treats for the days when you're feeling good.
Let us know how you get on.
Lots of love Mary xx
Hi Mary thanks for taking the time to reply, I have been overwhelmed with the support from this site and like you my hair doesn't really bother me as I have always had short hair and I have made a joke about it to family and friends and said I may grow it back and dye it purple or green - we will see. I know Chemo is not a walk in the park, but at least I have had other women's views on how they were and how they coped with it and everyone is different. I will keep you posted as to when I start the treatment and which drugs they will be giving me. I have accepted the situation and am quite positive - my Husband is the one who is suffering - he is a wreck and quite emotional - but that is men for you - women are much better at coping.
Thanks again Mary,
Hi ,
I also had Peritioneal and followed the same regime as others ,finishing treatment in Dec 2012 .I didn't find it too bad and I wish you good luck. The site is amazing and so supportive and informative , dy xx
Thanks for replying Dy - I think the site is amazing too - I have posted on other sites and no-one has ever replied - the support has been fabulous - I do appreciate everyone's support it has certainly lifted my spirits.
I will let you know when I start my treatment.
Many thanks
Joy
Hi Joy
I started chemo in late february and my last round is first week in June. I was scared but went with the flow and listened to my body - take it a day at a time. I had Taxol and Carboplatin every 3 weeks and found it not too bad - i feel fine day after chemo then grotty fir 3 to 4 days but by day 5/6 start to feel better. Getting plenty if sleep helps nit easy with the steroids during the first couple of days after chemo as they keep you awake but it does get better after that. Week 2 still a bit tired but generally fine. by week 3 my energy is (almost!) fully restored. I tend to feel a bit down in the dumps in week 1 but know its the drugs and not me. I have not had any nausea but even if i get an inkling of it the nurse told me to take a anti sickness tablet anyway which heads it off asap. The only thing i had on round 2 and 3 was muscle and joint oain during the night which kept me awake at night fir a couple of days, but i also got wise to that one by taking a couple of codeine before it even tries to take a grip ! My appetite is getting better as the chemo goes on and i just eat little and often and have found drinking loads of still or carbonated bottled water has helped with dry mouth issues.
Would echo others advice about eating a little of what you fancy no matter how mad itt seems - i have a craving for tinned spaghetti hoops in tomato sauce which i last ate when i was about 10 years old and im now 43 ! I lost my hair after 3 weeks - thought i would be upset but not so - i think it was because in the whole scheme of things, for me at least, it was not a priority but everyone is different i guess in regards to their feelings about hair loss. I am a wig girl as personally it helps me to feel better in my myself and i can just pull it on and go out - and i do not feel self conscious about it anymore. I got a super synthetic one online for about 80 quid and love it. Theres also the bonus if not having to wash and style my real hair for a few months - one less thing to think about
I wish you all the very best for your treatment and hope you have minimal side effects .
Very best wishes and keep us posted as to how you get on
Fiona
Xx
Thanks Fiona - everyone is so supportive on this site - I do not really mind if I lose my hair I have always worn it short - I just hope the treatment gets rid of my pains - my GP tried to tell me it was IBS - I wish I had listened to my gut instincts as I felt it was more likely to be bowel cancer - I never thought of Ovarian as I had a radical hysterectomy but you would have thought my GP would have referred me much sooner given my history.
I dare say I will probably get cravings - will let you know how I get on once I have started the treatment.
I had carboplatin on its own which was carboplatin given in a 2 hour over 6 sessions every three weeks. I didn't feel very well during chemo though by the third week I could go out and about with my husband if he drove the car. Walking was a problem because I was breathless and fatigued which I still am in fact but not to that extent. However, I know that everyone is different. I'd been given the drug after being in hospital for 18 days and was very poorly in the first place having had an aggressive episode. Maybe that was one of the reasons I wasn't well when taking the drug. It was a special anniversary a few days after one of the infusions so the nurse said to get some chocolates and a good DVD which we did. We had a nice time and just did something with the family once I'd improved. My GP gave me sleeping tablets because the steroids really interrupted my sleep and they helped and the anti-sickness pills I got were very helpful too. It was a hard time and I know it'll come again soon but I got through it with the help of people around me. The support I've had here has been a tremendous boost. I don't know what I'd have done without them. Very often, people around me would deny the seriousness of what I had or completely ignore the fact that I have the disease. The people here just told me how it was so I appreciated the honesty of it all. When you need answers, you've come to the right place. My very best wishes to you ... Love Tina x
Thanks Tina I know this is the right site to come to whenever I have problems about my forthcoming treatment and when I am receiving it- the support I have had from everyone who has replied to my question has been so uplifting and a real boost for me, sometimes family can avoid questions such as my daughters and my 92 yr old Mum who I know is terrified for me, my husband is not sleeping properly (I have to say I am) but men do not seem to handle unfortunate situations - women tend to be much more practical. So I know if something is bothering me I can always log on and someone will always reply.
I will let everyone know when my treatment starts and how I am coping with it.
Joy
XX
Hello Joy! By now you will have figured out that once we start we don't stop coming LOL. Joking aside though it IS the most incredibly supportive group. Quite a few with PPC and many with the various forms of OC. Just about all the experience you could wish for to call on.
So chemo: its rough but you adapt remarkably quickly. I think the grind of the long stretch ahead of treatment can be the most difficult thing - you should mark the progress, and celebrate the milestones as you tick off the weeks.
Difficulties esp with long paths are things like cannulas - the veins get abused by needles and drugs, and they literally retreat. So, if they offer you a port do consider it strongly - sounds bad but not as bad as multiple attempts to get into your veins.
I was lucky - on both my carbo/taxol and then cisplatin/taxol rounds I suffered no nausea whatsoever, and took none of the anti sickness meds. However, I did react v badly to taxol the first time, and it took a bit of balancing of steroids and antihistamine to get comfortable. I found I did get really knackered, increasingly so. My tastebuds disappeared entirely food tasted grey and I lived on rice, of which I had no taste expectation - it was less traumatic than putting something tasty looking in my mouth and tasting grey. The hair all went - cold cap can be painful and I didn't like the sound of that. I did get bad peripheral neuropathy - the numbness, tingling, pain and jerky nerves in feet and legs. Your neutrophil bloods can plummet sometimes - I had one delay as a result, and also one blood transfusion. A stomach bug was BAD, which I caught on the chemo ward! Some above are, in my view, underplaying the immunity issues. I would make a plan to be extremely careful... And lastly, my eyes went! If it affects other nerves I guess the optic changing is unsurprising. Had to change glasses three times. Now they seem to be changing back!
Hope that spiel also helps. There are lists of side effects on the cancer research uk site too, with a trawl.
Keep us posted!
Love
Sue xxx
Dear Joy
Welcome to our friendship circle. As you'll already have seen there's a lot of support here on this site and loads of good advice.
I am two years down the line of diagnosis and remember so well the shock - and and I was terrified of starting chemotherapy. Now I just see it as a means to keep myself well for as long as I can - and it's worked for me. I hope your oncology team can show you round the ward in advance. You'll find it all very normal and even boring. Your first session they'll take plenty of time to explain what they're doing and will be able to reassure you.
You've had so much good advice on here. I can't think of much to add, except to say I enjoyed Chinese Food on chemotherapy. Ken Hom has loads of simple recipes that I could prepare and my husband could stir-fry when he got in. I sometimes found it difficult to actually cook the food as I had a temporary oversensitivity to smell.
Sue's right about veins. They do shrink whenever you need a blood test or chemotherapy. My hospital put our hands in warm water with a drop of oil for 10 minutes and that really helped bring the veins back up to the surface and soften the skin. Staff should be very expert as they do it every day.
Take in plenty to amuse yourself. I treated myself to an I-Pad (good excuse) and personal wi-fi dongle-thing. You can watch DVDs, read books, read emails - and chat to us to while away the boring hours sitting in a chemotherapy day ward. Yes Boring! It is boring! It isn't at all scarey.
I'm glad you've found us. Keep posting and commenting!
Loads of love xxxx Annie
Thanks Annie - one of the things I said when I found out I was to have Chemo - I am going to buy an iPad - have just come back from shopping with hubby and I am now sending this from my ipad. I am so pleased I found this site everyone is so supportive. Will let everyone know when I begin my treatment.
Joy
XX