Chemo

[HenryEtta]

Has anyone got. Had chemo before using Carbollatin And VINORELBINE And did you loose your hair ,

[RLP49]

Hi there, I was on Cisplatin and Vinorelbine initially and yes I did lose my hair, despite the nurse specialist saying I wouldn’t... I didn’t go completely bald but I’d say I lost about 95%. I didn’t lose my eyebrows or eyelashes though and my hair is now starting to re-grow. I wasn’t offered the cold cap as was told it wouldn’t be necessary. I appreciate everyone reacts differently so you may be lucky and not lose yours or at worst just experience some thinning. I do wish I’d been forewarned of the risk, even if they thought it low so that I could have prepared myself both mentally and practically by having a wig instead of having to hurriedly get one.

After my first cycle of chemo I was changed to Carboplatin and Gemicitabine due to side effects from the Cisplatin/Vinorelbine.

[Swimdown in reply to RLP49]

Hi. Yes I had the same treatment as you and was warned that my hair would thin but I probably wouldn’t lose it completeLy. Well it did thin a lot but luckily I didn’t lose it completely and eyebrows and eyelashes remained. It did take a while to thickened again I now have my long thick hair back!

[RLP49 in reply to Swimdown]

Hi - that’s great you have it back, how long did it take to grow? My adjuvant chemo was stopped in March after just 2 cycles as the risk of covid was deemed higher than the benefit of the treatment. My hair seemed to start growing again in May and I now have about an inch, it’s coming in a bit darker and is quite fluffy and sticks straight up on top. I used to have shoulder length, dark blonde hair....

[HenryEtta in reply to RLP49]

Wow that’s bizarre they do say that the hair could be a different colour and texture than you had. Did your hair fall out just after 2 sessions then

[RLP49 in reply to HenryEtta]

It started falling out just 2-3 weeks after the first cycle... How long did yours take to grow back?

[HenryEtta in reply to RLP49]

I start mine on Monday and not looking forward to it . 12 weeks of it 😱 I have long thick hair which I nurture so the idea of loosing it makes me anxious but the alternative of not having chemo is not an option.

[RLP49 in reply to HenryEtta]

Hi, sorry, I thought I was replying to the other lady when I asked about how long her hair took to grow back. I hope your treatment goes well; take all the anti sickness meds on offer and the laxatives if you need them, and drink loads of water. Some people I’d read about have very few side effects, hopefully you will become of them. Maybe ask about the cold cap if that’s an option for you? I won’t lie, I was devastated about my hair but have come to accept it now and I have a wig that I wear if I’m going out, not that I’ve been out much as I’ve been shielding. Faith in Nature do gentle shampoo and conditioner, I’ve been using that since I started losing my hair and I stopped washing it everyday and stopped using a hairdryer. I was due to have 4 cycles over 12 weeks but was ill and in hospital for a week after the first cycle with neutropenia so the 2nd cycle was delayed and then the drugs were changed. I didn’t get to complete my treatment due to Covid which worries me but I’ve recently had my 6 month scan which thankfully showed no residual disease post lobectomy or recurrence.

Good luck with everything and I hope Monday goes ok. If I can help with any other questions, please feel free to ask. X

[HenryEtta in reply to RLP49]

Ah thank you for your message . I will keep you posted

[Swimdown in reply to HenryEtta]

Good luck with your treatment. I hope your hair just thins like mine did on that same treatment! I had it cut a bit shorter prior to starting and I think that helped. I had surgery after the chemoradiation to remove upper right lung so my hair didn’t really start thickening again until about 6 months after that.

[HenryEtta in reply to Swimdown]

Hi what type of cancer in the lung was it . So happy to hear all your hair didn’t fall out so hopefully mine want either . How long was it till you felt better and breathed ok from the lobectomy as I am 6 weeks now and still find breathing a struggle if I climb up the stairs .i have also developed chronic reflux did you get that .

[Gillo22]

Hi

I had Cisplatin and Vinorelbine pre surgery and pretty much lost all my hair. After surgery I had Carboplatin and Vinorelbine and didn’t lose any, so hopefully you’ll be ok.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello HenryEtta,

as you can see from the reply's above everyone has a different response to the chemo, often this can depend on the type and dose of drugs used. Macmillan have a very good fact-sheet on hair loss which gives information on what to expect emotionally and how to prepare for how you might feel. There are also good practical tips on hair care during chemo, I have added the link below.

macmillan.org.uk/cancer-inf...

If you would like to discuss anything further you can email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Swimdown]

Hi. I think recovery time is dependent on the surgery you had. I was treated for Adenocarcinoma in upper right lobe which was too large for VATS surgery so was given chemoradiation first and then large open surgery to remove the upper lobe. I was very active prior to this so found the initial recovery period frustrating but as it was a large op so I had a lot of post op pain and was slightly breathless walking and doing stairs. I gradually increased the amount of walking I did each day and things slowly improved but it took a few months. I didn’t suffer from reflux. Try to take it slowly and get fresh air every day, don’t forget your breathing exercises! I still do them now 2 years on. Feel free to ask me anything else. Take care x

[HenryEtta in reply to Swimdown]

What type of breathing exercises do you do . I am a Pilates teacher so I do lateral breathing but that’s is hard at the moment

[Swimdown in reply to HenryEtta]

Well my physiotherapist has told me to do the ACBT (active cycle of breathing) which you can find on line but check with your physio at the hospital where you are being treated. Unfortunately I developed a cough a few months post surgery which A CT Scan showed is caused by a closing up of the bronchus and middle lobe of my lung resulting in irritation. So that’s why I do the regular breathing exercises which help considerably. Did you see a physio after your surgery to advise on breathing exercises? Immediately post op I did just deep breathing and controlled breathing. Hope that helps.