1st chemotherapy session - Carboplatin- Paclitaxel

Hi Ange19

I had the same chemo as you are having (May-Aug 2022)

I can understand you are worried about the side effects and are feeling apprehensive. I was the same. You are right that people can be affected differently. I remember my chemo consents appointment and them going through the side effects and thinking how scary it was but I now liken it to if you look at the potential side effects on a paracetamol leaflet- there are loads but you are unlikely to have them all, if any.

I think the main thing is to go with the flow and see how it effects you. Any worries or symptoms then give the hospital a call and they should be able to either reassure you or offer medication to help.

My regime was a 21 day cycle and I did use the cooling cap.

I would arrive early and have bloods rechecked. Then at around 830 I would be having height, weight, blood pressure etc done. They would then put on the scalp cooling cap. I had a canula each time so that was put in.

I was given pre meds- anti nausea, steroid and piriton. The paclitaxel is always given before carboplatin. The paclitaxel takes on average 3 hours to infuse and the carboplatin is around an hour. Between each medication they run through a saline flush. I would be finished around 5. 

On the day I would feel a bit sleepy- but that was more the emotional side and the piriton. I was sat in a reclining chair which was very comfortable and they regularly bought cups of tea and biscuits. Sandwiches were bought round at lunchtime. Using the toilet wasn't an issue as you can just take the drip stand with you. I would advise comfy clothes that you can easily pull down as you will be one handed if you have the canula. 

Side effects for me were similar each cycle and tended to accumulate as the cycles went on. They give you a book to track any symptoms and they will write any medication in there for you. They will talk everything though with you so don't worry. They will also give you a 24 hour phone line that you can call.

Side effects for me were mainly hair loss, back pain, nausea, sickness, upset tummy, fatigue and generally feeling out of sorts. This was worse for the first few days and I would mainly stay home and rest as much as I could for the first week. It was a case of snoozing on and off and not doing too much. The 2nd week I would pick up and felt able to potter around at home and could do short walks. The third week I would start to feel much more like doing things. Avoiding infection is important and it's a good idea to have a thermometer and keep an eye on your temperature. Any sign of infection call the hospital. 

What struck me was how calm and efficient the ward was. it was divided up into bays with the reclining chairs. It was bright and airy. I was well looked after and supported. 

I hope this helps a bit, if there is anything you want to ask, please do so. 

Good Luck

Jane

Hi Jane

Thanks for your reply, it is really informative and helpful.  It is just the not knowing what to expect and how you are going to feel, a bit like when you first find out and you are waiting for results.  It’s the unknown.

When you felt alright in between treatments did you go out ?  I have a ticket to the theatre in February but was unsure as to whether to go or not.

Thank you again.

Ange

Yes, its the unknown that makes it feel hard.

I didn't go out other than seeing friends/family in small groups but this was when covid was doing the rounds. I did actually test positive for covid the day after treatment ended.

I also became neutropenic which means I had to avoid infections as they could have become serious. 

I would see how you go and see how you feel nearer the time and run it by your CNS. For me it would have been a worry about being able to sit comfortably in the seats (I had back pain from the paclitaxel) and the risk of picking anything up. On the other hand it's good to have something to look forward to.

Jane

Thanks again Jane.  I’ll just have to see how I am and how I feel.

Ange

I hope it all goes ok today for you. Let us know how you get on and if you need anything , you know where we are.

Hi Ange19,

Jane has explained everything so well, she is brilliant on here, a real support.  I too was so scared going into chemo (my dad was hospitalised regularly with neutropenic sepsis for cancer treatment for lymphoma). So far, it has not been as bad as I thought. I am defnitely suffering more this 4th round, but on 1 to 3 I was back to feeling great within two days of symptoms starting. My symptoms were bad bone pain, literally everywhere, intermittent though, not constant generally just feeling rundown and out of sorts. I have not had any sickness or nausea and feel very grateful for that (I am real wuss when it comes to sickness). This 4th one has hit me much harder. I am on day 6 after chemo and still feel as if I have flu. I am keeping an eye on temperature as Jane says, this is very important, once temp okay I take painkillers for pain. This time round I have the usual aches and pains but also numbness in fingers, stomach cramps and headaches. Hope this helps. Good luck and as Jane said, you may not get any symptoms. I speak to people at my chemo unit who had had none. Oh I lost my hair too but have handled it far better than I thought I would. Take care xx

Hi Hop

Thanks for your reply .  Yes Jane is really good at explaining everything clearly.

Im pleased you did not have many symptoms in your first three sessions, and hope that your symptoms get better soon.  Is this your last session?

I’m just back from my first session, and it wasn’t too bad at all.  Luckily I had no bad reactions receiving the treatments, I am feeling a little queezy at the moment, but I’ll see how I am later.  I spoke to a lady who was having treatment and she had said she has been fine, apart from losing her hair.  

Good luck to you and thanks again for the reply.

Ange

Hi Ange19

My experience is similar to Jane, however I did suffer allergic reactions to the Paclitaxel, the nurses stay with you at the start to make sure it goes smoothly, they were aware I was having a bad reaction and quickly stopped the infusion, gave me more antihistamines and steroids and restarted the treatments some 45 minutes later, but I can tell you that not everyone experiences this, for most it is straightforward, I also  chose to use Cold Cap Therapy to try and keep most of my hair, so the day was a little longer as you have to wear the cap before the treatments start and afterwards for about an hour after treatment ends I think. 

I can tell you that I feel very lucky that I have no lasting effects to mention but then I only had 3 of the 6 proposed combined treatments of Paclitaxel and Carboplatin, the final 3 were just the Carboplatin

Yes you will feel rubbish for few days and aching heavy legs, possible tummy troubles etc then after a week passes after the treatment you sort of start feeling more normal and get better again. I consider myself very fortunate that I was never poorly with infections or stayed in bed all day during the chemo period, in fact I continued to work from home my part time admin job, I went shopping and for walks and tried to eat and drink sensible . I do realise it's not like this for everyone and that's why I consider myself very lucky and hope your treatments go smoothly and don't cause you too many problems. You also have the assurance by means of a little red card that you can call the tel number any time day or night if you have any concerns, if you should feel really unwell when at home you can go straight to accident and emergency department and show your red card, you will be seen as priority as you may need antibiotics very quickly to rule out or treat sepsis.  Whatever issues you come across, the doctor or nurses have the solution, I developed really dry skin with chemo,  they prescribed me an emollient moisturizing cream straight away.

Hope I've put your mind at ease a little, you'll be ok, just trust your instincts and listen to your body especially if it needs to rest, this is a brutal journey but we are strong enough to get through it with a little understanding and support, we're here to answer queries or support you through. Take care x

Hi madesp

Did the cold cap help with hair loss?

Hello Shar58

With some chemo comes hair loss, Paclitaxel, I believe if you have this drug you have total hair loss after 14 days of 1st treatment or so you notice shedding, you loose hair from everywhere including eyelashes and brows. 

I chose the Cold Cap Therapy as I knew my hospital have this facility and thought I should give it a go. I managed to keep most of my hair but still did have some shedding, it was quite annoying as I was finding hair everywhere so I bought a little handheld shark vacuum for the sofa and bed and wherever I could see my fallen hair was!

I still lost some hair and was worried as I already suffered from thinning hair before treatments and so was wondering whether it would grow back,since chemo new hair growth is finer hair but its more or less back to how it used to be I'm glad to say, most of hair loss was at the top, it went thin so I bought some wide headbands and covered that up well. My hair at the back remained unchanged and I really think this was because on the 2nd treatment the nurse put a different size cap and it didn't fit as snug so the contact with scalp was poor at the top, I realised half way through and asked the nurse to adjust it. I did also get a wig with the voucher+money Macmillan provide, to wear for going out and occassions when the hairband wasn't appropriate.

It feels very very icy cold on scalp at first, after 20 minutes you don't notice it as much, some ladies took paracetamol half hour before the cap was fitted and said it helped, I just braved it through, here's a link if you need something else to read it may help. Take care x

paxmanscalpcooling.com/