Carboplatin questions

Hello FizzyLizzy

Welcome to the Online Community. I am sorry that you have had a diagnosis of womb cancer and need chemotherapy. 

If you click on my name you will see my profile, but I had chemotherapy in April-August 2022 for womb cancer. I had paclitaxel and carboplatin. 

I totally understand your worries about hair loss and the feeling of panic around losing your hair. 

Have you asked about scalp cooling? I did this and kept most of my hair and had no bald spots. I had some thinning all over and lost body hair from about 14 days after the first chemo cycle. 

People can react differently to chemo and there are different doses and different regimes. During my chemo treatments there were often people in the bay with me who were having carboplatin. None of them had lost all their hair. Some did have some thinning. The effects will also vary to what your hair normally is like. So if your hair is thicker you may not actually notice so much. 

Although my hair did have thinning, I also had regrowth during chemo. I shed most after the first cycle, a little more each cycle (but already had it regrowing) and then again after the final cycle. I had a wig and head scarves on standby but did not need to use them. I bought some hair fibres which helped disguise any thin spots and also the root touch up sprays as well. They blended away the thinner bits.

I really do understand how you are feeling and felt the same but for me getting rid of any cancer felt more important. I was scared stiff at the thought of chemo but experience I had did not match those fears. Most of my side effects came from the paclitaxel- I know that because they told me. My doses were changed and I was given medication to deal with the side effects and on the whole they worked. I was on a 3 week cycle and found that I felt rough in the first week and then more up to things in the second week. By the 3rd week things were getting back to normal and then the next cycle would begin. 

My advice is to think really carefully about your decision and to get as much information as you can. Talk to your CNS nurse. It is your body and your choice and as my consultant said to me- you can stop at any point. Ask questions to your team. What I can tell you though, from personal experience is that when they tell you all the potential side effects, it is really scary but they have to tell you every possible one so they can gain your consent. However my experience was I suffered very few of those side effects and when I did they were mainly short lived and I could take medication to control them. Its like if you read the pamphlet with paracetamol- the chances of getting all of those side effects- doesn't happen. 

I was very scared before my first chemo but my experience was nothing like I thought it would be. I was sat in a reclining chair. The ward was separated into small bays and it was a bright and airy place. It was calm and positive. I was really well looked after by some lovely nurses. Maybe that's something to consider asking about? Could your CNS take you to the chemo ward to show you around and explain things from the experts point of view but also you would see others who were having the treatments they are suggesting to you. You could also ask to have a look at the cooling cap. Just a suggestion- but looking back- that would have helped me.

Good Luck whatever you decide, but please feel free to ask any questions. 

Jane

Hello

Thank you so much for your lovely reply. I did ask about scalp cooling but I've been told it's not available for carboplatin and I've had a pretty poor experience at clatterbridge Wirral last week during my assessment appointment that has left me reeling. They were not what I expected at all. 

Im very distressed after it and suffering a lot of anxiety as a result. 

I don't know why the cooling cap is such a difficult thing to have or even have offered round here . It's been disappointing to say the least. 

That's really helpful about your experience around hair loss. I don't even know why I'm so upset about my hair. I didn't think I was a vain person or particularly attached to my hair, but clearly it must be more important to me than I think or even realised. Or maybe it's a symptom of something else, 

I haven't asked for a diagnosis or prognosis as I can't cope , I know the basics only. 

I really feel in a dark place. I can't understand why I can't have a cold cap, why it's such an ask. But the replacement place I'm going to instead of Wirral (Halton) doesn't offer cold cap anyway so I won't be able to have it. 

I have tried to look into wigs etc but it distressed me even more so I've shelved that for now.. 

I'll have a look at root sprays and some head scarves maybe if I can stay calm enough to do it. I keeping getting these horrible waves of panic and I feel like I'm drowning sometimes. 

Anyway, thank you again for your lovely response and I'll have a few more reads of it and then maybe ask my team if I can have some more time to get my head around things before we are supposed to start on Thursday ..I don't feel ready at all. 

Hi FizzyLizzy

I understand how you feel. When I was told that I needed chemo, my first thought was my hair. It is not about being vain, our hair is important and part of our identity. Before chemo my hair was shoulder length, slightly wavy and in good condition. During chemo it thinned. A month after chemo finished it started to come back thickly again. It was shoulder length throughout, just thinner. Maybe about an inch shorter at the sides.  I still needed to have my fringe trimmed during chemo. 3 months post chemo I was able to colour it. 6 months I felt it had recovered - condition etc. 1 year post chemo I had it cut back into my normal style. To be honest it looks better than it did before as the chemo has caused a bit more of a wave and thickened it up. Because of the waves it is perhaps about an inch shorter but I get lots of compliments. I have had to work hard with conditioning treatments.

I know how you feel about the wigs. I found that really hard but at my hospital there was a wig lady who came to the hospital every Wednesday with wigs to try on and she had a hairdresser working with her. She was lovely and gave me hope. You should be entitled to a wig voucher to help cover the cost. It was hard to go to the appointment but I took a friend with me. I never liked having to get the wig but I was more worried that I would need it in case I lost all my hair suddenly and I knew that given the choice I would prefer a wig to scarves and would not want to be seen without hair. Some people are braver than me and just shave it off, but I am not that person. The very idea would send me into a melt down. There was a Macmillan volunteer at the hospital who would bring head scarves along to try and give advice but I was too anxious to do it. I did buy some scarves from amazon as preferred to try on at home. I never used them though.

I can understand why you feel in a dark place regarding the cold cap. From what I understand they don't normally offer it with carboplatin as the chances of hair loss are so much lower however I would recommend you go back to your consultant and explain that you are considering not having the chemo and could they intervene. It maybe that the consultant, knowing your circumstances could over ride the policy. Especially with carboplatin as it is normally a much shorter infusion.

I am sorry that you had such a bad experience at your appointment. I was so lucky at mine. I had a lovely consultant who explained things clearly and she had a nurse with her that I had met before. I also took a friend with me. I did not feel rushed and was able to ask all the questions I needed. I expressed my worries about hair loss and straight away she asked if I wanted to try scalp cooling and also asked if I wanted a referral to the wig lady. It made me feel a bit more in control and control is what you need in this situation as cancer takes away a lot of the control.

I think it is very normal to feel upset about hair loss. I doubt there are many on here who would not understand how you are feeling. With the root sprays etc- I found it helped getting them on line rather than going to the shops, but remember that many people use them for touching up their roots between colouring sessions so no body would actually know why you are getting them.

You say that your new place does not offer scalp cooling. If this is the thing that would enable you to feel like you could try the chemo then I think that you need to speak with someone. Whether it is with your oncologist or even your GP surgery. I had a great practice nurse and although I did not see my GP during treatment I had several online consultations where he was able to contact the hospital directly and intervene on my behalf. I just wonder if it is worth contacting them today, explain that your chemo is due to start this week and you are really anxious about it and particularly about the hair loss and lack of access to scalp cooling. I wonder if there is a chance it could be arranged somewhere else nearby? I had a choice of hospitals but I did stick with my original as they were so good. I just think there are probably options/choices that you could talk through with someone. I must admit that once I knew that I could go ahead with the scalp cooling I felt much more able to accept the idea of having the chemo. 

With regard to prognosis/diagnosis and not wanting to know any more than the basics, that is fine as long as you feel you have been told enough to make an informed choice about the treatments. I didn't want to know percentages etc as I don't feel it is necessarily helpful. With chemo as well there are different reasons to have it. Just make sure you have enough information to do what is best for you. But if the hair loss is the main consideration then say that to your GP/Team, I am sure that you are not the only person who will have said the same. 

Jane

Hello FizzyLizzy,

I had the paclitaxel and carboplatin last year, was supposed to be 6 cycles 21 days apart but I had to ditch the Paclitaxel after the third cycle due to severe allergy and so carried on with just Carboplatin for final 3 cycles. I was worried about hair loss so opted to use COLD CAP THERAPY which helped me keep most of my hair, I believe it's the Paclitaxel that causes hair loss not the Carboplatin. Paclitaxel also made me feel rough for first few days then eventually I felt more normal, throughout treatments I managed to work my part time office job from home. 

The Carboplatin was easy, I found I had no issues apart from blood was a bit low, I made sure I ate well and had a small bottle of Guinness with my main meal, I think that helped.

Hopefully this info has been useful but should you wish to ask anything then please do ask.

If you click on my username you can catch up on my story so far.

Take care, wishing you well on your forthcoming treatments. X

I agree with Madesp, my consultant said that my side effects and issues came from the paclitaxel and although there can be some side effects from carboplatin they do not appear to cause so many issues. My consultant told me that carboplatin was like the cake and did the hard work and that paclitaxel was like the icing on the cake and that is why she said it was ok to reduce the doses of paclitaxel when I had issues with it.

Hi Lizzy 

I'm sorry that you find yourself here, but it is a good place to be to get other people's point of view, experiences and generally to hopefully reassure you.

I was diagnosed in Feb 21 with endometrial cancer. I had a hysterectomy then 6 months  of carboplatin.  I really can't say that I noticed hair thinning, although over the years, and due to menopausal symptoms, my hair was thinning slightly anyway. The main problem that I had was bloating  and constipation.

I have since had to have paclitaxel and have of course lost my hair. When it started to happen , it was extremely upsetting but I was prepared with my wig. Once I got used to wearing a wig, I bought another and quite enjoy not having to faff and mess about with my hair.  I often get comments and people are genuinely shocked when I say I'm wearing a wig. I was very open about it and I helped a few people in the treatment suite to take the plunge and they were so happy when they did. Try to see the positive aspects and focus more on the type of treatment that is needed to help you to get better.

Love from Helen xx

Hello everyone , I wanted to pop back and give an update and to thank you for talking to me about your experiences and thoughts on what I was feeling.

So, it's been a week since my first chemotherapy, I had quite severe nausea between day 3-5 but I'm so much better and feel ready to move forward with slightly steadier steps . 

They had a cold cap ready for me and I was so blumming grateful to them. It made the works of difference and although I found I was extremely tearful and stressed out, they were fantastic and they understood I was so worried about my hair.

As for thinking I did notice a little more in my brush but I'm hanging on in there, trying hard to be calm around it all. 

Thank you again for your wonderful words of advice and your experiences. You made such a difference to me. Xx

Hi Fizzy Lizzy

Am glad you are starting to feel a bit better after your first chemo. Am glad that you have been able to use the cooling cap and that they were so understanding. Be prepared for some shedding- mine was around day 14 and don't be afraid to gently brush it out. This stops it matting with the other hair which can cause stress on it. Don't avoid brushing because you are worried about it coming out- if its already coming out brushing wont stop it. Mine shed for around a week and then slowed down. Shedding is to be expected, it is part of scalp cooling and does not mean it is not working. Just treat it gently and focus on what you still have rather than what has come out. I noticed regrowth after my second chemo treatment. Keep going- it is also protecting your follicles and I am convinced it helped with my regrowth.

Please let us know how you get on and good luck with your next cycle

Jane