The doctor let me know on Friday that I have to do chemo. We were thinking radiation originally, but he feels like chemo is the better option right now.
Carbo/taxol - 6 treatments - 1 every 3 weeks.
Does anyone have any tips for starting chemo? I have no experience with this at all. Nor have I known anyone on chemo. They have me meeting with a nurse and a nutritionist before starting, but I prefer to hear it first hand from those who have been through it.
Hi quiggs, sorry to hear you have to get chemo. Nurse will explain everything to you they are very good if there’s something your not sure of don’t be frightened to ask. I’m in Scotland & I got a prescription for a wig which I needed as my hair fell out totally after 1st chemo, but at least it’s winter so you will get away with hats too. I was mainly ok... 1st week ok, 2nd week tired & 3rd week starting to pick up again. My advice carry on as normal, but if you get tired or achy just stop & rest let your body tell you what to do. Hope everything goes well with you, let us all know how you get on.
Lv isobel xx
Hi my first tip is try not to worry I know sometimes easier said. My nurses were wonderful and I found the actual process quite straightforward but it was approx 6 hours per session. My friend accompanied me and we chatted to pass the time which was a great distraction but I appreciate some people would rather peace & quiet. Drink plenty of fluid as this helps flush your system but you will wee a lot but that’s normal. Now I was lucky and didn’t have any major side effects (other than loss of hair) I wasn’t sick but I did suffer with restless legs for approx 2 days after, I lost a bit of my sense of taste & smell. But my main tip is try to remain positive & think of it as just having a bad hangover for a few days. Wish you all the best
I'm happy to hear you didn't have any major side effects. I like your idea of thinking about it like a bad hangover. That's a new perspective!
I was pretty terrified by the prospect as like you had very little experience or knowledge... If you put chemo tips into the search box, youll find lots of threads and discussions. Like most things, once you start it becomes much more manageable and youll be taken very good care of by chemo nurses. Anti nausea drugs are pretty good now and there are options available if you need to find ones that work for you... do ring the helplines if you have any concerns
My top tips would be to keep a simple diary as it helps to understand your own rhythm. THere is a continuum of side-effects (which affect individuals without any great rhyme or reason) and whilst it can be tough, youll find your own way through it. With Carboplatin, constipation and fatigue can be quite common- drink plenty before during and after and try to walk a little, whenever possible even if its a small distance.
Get a digital thermometer.
MOstly though, take the very best care of you.... do what feels right for you... be very kind to yourself , Best wishes Sxxx
O & if just carboplatin, you won't lose your hair, and time having chemo is quite a lot shorter xx
Good to know.
Hi Quiggs... I'm really sorry, I misread your post and thought initially you'd been prescribed just Carboplatin, hence much of the focus of my replies! Im going to leave my responses just in case others are reading who have been given the single agent. The general suggestions and tips apply regardless. Wishing you hope and strength XXX
I agree with Sunfleury keep a diary I had forgotten I kept one it was useful to record your daily temperature as well as just noting how you feel especially after chemo you can then refer back and you should see a pattern in your side effects which will help you to plan for the next session as you will have a rough idea on how you are going to feel so you can plan s day out or have friends around
Drink plenty two days before it starts and have plenty of water during the infusion and two days after to flush your kidneys. They recommend no pate no soft cheese, Live yogurt and take aways
Good luck
LA xx
You've had some good advice here so I've concentrated on the actual chemo ward. Take some shoes with you that are easy to put on in a hurry. You'll probably be in a reclining chemo chair or a bed and it's comfortable to take your shoes off. However, all the saline flushes plus the extra water you'll be drinking, will mean you probably need to make a sudden dash for the loo, accompanied by your drip machine. First time it's a bit difficult to manoeuvre it and if you've got to waste time tying shoe laces like I did, you'll be getting into a panic that you won't make it in time.
If you have noise cancelling ear / headphones, take them as the drip machines (they do have a technical name but I've temporarily mislaid it in my mind) beep to warn the nurses the drip is nearly finished, then a different sounding beep that it has finished plus alarm beeps if the drip has stopped dripping. Multiply these beeps by as many people on the ward and it's not peaceful. Someone may pull the red alarm cord in the loo too, thinking it's the light switch; that's an irritating sound also. If you have an iPad or phone you can play music or audio books through the headphones.
If you fancy a sleep, a mask is helpful to cut out the light.
Some light-reading magazines or ebooks or similar. It's unlikely you'll feel up to reading War & Peace.
Wear layers, in case the ward is cold and / or you find yourself close to the air-conditioning unit. The chemo is stored under refrigeration and so it can initially make your arm feel quite cold. I used to take gloves. It may be warm so you might want to shed layers so be prepared.
Some snack food is handy in case you're asleep when the food comes round and you miss it. If you're going on your own, take a flask of coffee. Once you're connected up, you're not allowed to leave the chemo ward but if someone is going with you, they can get you coffee/tea etc. Maybe some chemo wards have coffee on tap but mine doesn't.
When you go back in three weeks time, everything will seem familiar and you'll be an old hand!
All the best!
Thank you for so many great tips. I will keep all of those in mind.
I was given steroids for a few days while I had mine (I have it three days in a row) but I know some are not offered them. If you aren’t offered then ask for some. They boost your body when it’s needed most. I was also given anti sickness meds to take home too but luckily didn’t need them. Was glad I had them.
You've been given loads of good advice here, I'd just like to add, despite finding it hard, I've discussed it with others going through it and we all found it passed much quicker than you could ever imagine. Each day that passes takes you nearer to the end so hold onto that during any bad times xxx
Hi my mum is going to have her third round of chemo next week so far she been ok not felt sick yet but she has been getting tired what keeps my mum going is every time she has a round that’s one session ticked off 😉the first time we went it dragged a bit as they couldn’t find her vein even though she drank plenty so took us 8 hours to finish instead of the usual 6 all I can say is drink plenty and rest plenty my mum is also recovering from a hysterectomy do to cancer but she’s a battler as I’m sure you are her hair is going thin but she still has hair at the moment good luck with your treatment hopefully a family member or friend will be going with you but don’t worry if nobody can go with you there are plenty of people to talk to all the best xxxx
Hi Quiggs -
I'm in CA so it may be a little different, but I just finished 4 rounds of Carbo taxol, each 3 weeks apart. This I was told is a very potent combination, and I believe it. I am grateful for it. It's manageable, and I'm sure everyone reacts differently, but here is my experience.
I was told in a prep appointment what to expect - and any questions I had were well answered.
Here, they gave me 2 prep IV's, one was for nausea, the other was Benadryl, an antihistamine, to prevent a serious allergic reaction.. Within 15 minutes the Benadryl made me so sleepy I slept almost through the 6 or so hours it took for the Carbo and the taxol to drip in.
I experienced insomnia combined with profound fatigue in about 3 days after chemo for two days, probably from steroids, then pain in joints and malaise for another 3 or 4. And a variety of other odd symptoms. I logged every day.
Some of those days are quite unpleasant but any time you are in difficulty, the chemo nurses are just a phone call and a suggestion or a prescription away. Don't try to be stoic!
That said, I think the taxol makes you lose your hair - at about 14 days or so.
The tips others gave you were great - I'd just emphasize that I was told no less than 64 ounces of fluid a day, especially the day of chemo and the 3 days following. I logged my intake, to be sure I got that much. Also logged the pills i was supposed to take. Also layers of clothing - the room can get cold.
And if you run into something, write us here. And if you want to scream, this is where you can do it freely. Others near you will see your post during daytime hours. For me it's night so I'm slower to respond.
Keep us posted.
Judy
I have just finished 6 cycles of carboplatin and have found it manageable. Drink plenty before and after chemo. Constipation and nausea are the main problems but all manageable with medication.After 5 to 7 days you start feeling better and you can carry on as normal.Have something to focus on while going through the cycles. We had just moved house so we had lots to plan and that made the time go quickly.I found all the ovacombe posts very useful and with others going through similar emotions it helped by not feeling alone.I have not lost my hair just a bit of thinning. Also 1 c. Take care and be positive.
Lots of really useful advice from seasoned experts. There is nothing more I can add but just wanted to send you my very best wishes. We’re a good band of sisters (and some supporting brothers) to have at your side if you need anything over the coming months. Jo 🌺🌻🌸🌼🌹
As Shropshirejo says there is nothing more for me to add with all the great advice above, but just wanted to send my best wishes. Hope everything goes as well as it can for you.
Paula xxxx
One thing I found very useful was to keep a diary. Make a note of how you felt and what and when you took medication. Also bowel movement. I found that as I went through the cycles I learned when to rest and when to take medication to get best results. I think it’s good to get hair short as if you are going to loose it it’s less tressful and annoying. Sx
Hi, you'll be fine. Sounds worse than it is everyone gets anxious about the unknown. My friend stayed with me . Pending where it's done, at my place the first time you got to lay down and watch TV in a private room. By the 2nd or 3rd time you sat with others in a chair. They offered lunch I always had an appetite. Key when you go home drink lots of water. If no one stays with you , you might consider a book. The day after sometimes they'll give you an Immune booster shot. If they do it can cause joint pain. Found out if you take Claritan not the D, for 5 days it helps a lot. Best wishes you will be fine. I also went to have a massage usually the end of my second week. I figure it helps get the Free radicals out so chemo could kill em. Worked great for me I'm cancer free almost 4 yrs. Stay positive. Liz
Hi Quiggs, I am in Australia, and here they insist on separate educational hour at the hospital every new type of chemotherapy treatment you have, and it sounds the same for you there too, they are wonderful and they will give you notes on the treatment and what you need to take and do to minimise and deal with side effects, they are experts in chemotherapy and know all the tried and true ways of dealing with things, we have wonderful Cancer Council Ladies here who are just fabulous in the hospitals and so caring, I felt so bad, I was really longing for my chemo to begin and I felt so much better on chemo than I was before I started, it was making me better, a positive attitude helps and chemo whilst not pleasant is actually making you better! Good luck Quiggs. Ros
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