Hi Silver

I needed to read a positive post like yours as I've been really down these past few days as my hair has started falling out. They told me I wouldn't lose it on the adjuvant chemo drugs (Cisplatin and Vinorelbine) I was on which is why I think it was such a shock to me. Yesterday I went wig shopping. I've not yet found a perfect one but there are 3 possibles. I've not yet had my hair cut short either but it's so thin on top and straggly at the back I will need to make a decision on wigs soon.  I just can't seem to stop crying every time  I think about it and look in the mirror.
I've had a tough time after cycle 1, as well as the nausea and fatigue I was expecting, I had tinnitus and also ended up in hospital for a week with neutropenia, thank goodness I was taking my temperature and knew to contact the hospital if it was 38 degrees.
The oncologist has suggested I try a lower dose of Carboplatin instead, or stop the chemo but I reckon I should try to keep going as although surgery removed the lung cancer the chemo was suggested as a belt and braces due to the size of the tumour, and if I don't have it and it comes back, I think I'd always be wondering if the chemo may have prevented it.

I admire you still working, I too work for myself and usually do contract work but I can't face it at the moment but I know I'll need to do something to keep myself busy on the days I feel ok...

I hope all goes well for you on Monday. I'm seeing the oncologist and having bloods on Monday and all being well will start cycle 2 on Wednesday.

Ruth

I'm with you through this. About to start 2nd chemo on Monday. Felt so ill and nauseous on the first one, phoned Onco nurses 3 times in the night, but my temperature was low rather than high so didnt need to go to hospital. I think its best to stay away from crowds on that 2nd low cell count week. 

I felt so much better when I went to the wig shop yesterday. Clive goes to the hospital once a week so it was through him He took me into a private room and cut my hair into a pixie cut. although I ordered a couple of wigs through his catalogue I found one in the shop which was a bob and he cut a light fringe into that as well.i came out of the shop feeling confident, in fact Im going out for coffee with a friend today and it will be my first time wearing it! Its not very nice having hair all over the house and it was a relief to have it cut. In fact I quite like it and I've never had short hair. Take control and you will feel better about it and it will grow back!

I am the same with wondering if all these awful side effects and chemo is worth it, it will give me an 8% more chance of the cancer not returning, but like you I dont want to take the risk, so will grin and bear it, its brutal. 

Im trying to think of nice things after the treatment is over, we are going to get a puppy and have mini breaks and Im looking forward to my garden, whenever it bloody stops raining. Have taken up swearing too, find that helps!!

Stay in touch

Silver x

Hi, you sound really positive and confident about your new hair which is great to hear. I've been sitting all morning looking at wigs online and reading about the pros and cons about all the different types...

Yes, at times I do wonder if for the 1-2% benefit the chemo will apparently give me, if the risks and side effects are worth it but if it never comes back it will all have been worthwhile although I'd never know if that was down to the chemo or not.. 

Enjoy your coffee with your friend and all the best for Monday and your 2nd chemo.

Ruth X 

Hi Ruth,

I'm so sorry to barge into the thread but I'm really interested in what you said. I was diagnosed with breast cancer last month and now recovering from mastectomy. I've been told chemo will only give me 1-2% benefit therefore they won't advise me to have it. I'm still waiting for Oncotype score to confirm but as I'm only 45 with 2 young kids I can't help but think I want that 1-2% on my side despite the side effects! I was just wondering whether you were advised against chemo too but decided to go ahead anyway?

Hooe you don't mind me asking - this is the one thing I'm agonising over.

thank you so much,

Ayne c

Hi Ayne

Of course I don't mind you asking and I'm sorry you are going through this too, and I hope you are recovering well from your surgery.
My oncologist didn't advise me either way but gave me the facts to make an informed decision and I did lots of reading up too.

I came to the conclusion that any benefit was better than none. I'm only 49. With lung cancer if the tumour removed is over 4cm (mine was 4.8cm) they offer adjuvant chemo, even if there is no evidence of spread to the nodes, which there wasn't for me. My surgeon described it as 'Belt and braces' and I've seen people refer to it As 'mop up'. I felt I had to give myself the best chance of it not returning and I know if I hadn't had it, and it did return, I'd always have wondered 'what if I'd had the chemo'. I also thought the NHS wouldn't offer expensive treatment if research hadn't shown the benefit versus the cost.

I'll be honest, I didn't expect the side effects to be so bad reading online and about other people's experiences and the hair loss is apparently extremely rare for the drug I was on, they told me I wouldn't lose my hair so it came as a real shock and has hit me hard but reading Silver's post earlier has inspired me to try and take control. I did also wonder about stopping after the first cycle but again, feel I should carry on, especially now I've lost my hair, and they're going to try a different drug and a lower dose.

You will make the right decision for you. If you have any other questions, feel free to ask.

Ruth x

Hi Ayne,

I have had masectomy too, but my cancer was in 2 lymph nodes underarm and I have 2 enlarged lymph nodes in my chest wall. I have been given an 8% chance of the cancer not returning if I have chemo. So for me if was an easier decision. I have had my first chemo and the side effects are not pleasant. Everybody is different and I am sure you will make the best decision for you, I would discuss a bit more with your oncologist nurses. Good luck with whatever you decide,  

Silver

Hi.  I am too in the same position.   Am having chemo to reduce reoccurrence.  In my case my income score was high so reoccurrence reduced by over 15% if do chemo so was a no brainier.  
 

I had first chemo yesterday so waiting for side effects to kick in.  Tried the cold cap which actually was far worse than the chemo element as gave me a horrendous headache and had to keep cap on for four hours.  Am going to see if it has any benefit and make a decision about whether I persevere. 
 

I have seen some ladies in the unit with wigs and they look amazing so sure you ladies will do too.  
 

wishing you all the best for your second chemo Silverdays and Ruth.  

The side effects with me kicked in about Day 2. If you are unsure about how you are feeling phone the oncologist nurses, they are so supportive. Everybody has a different reaction, its the not knowing that's the hard bit. Mine is 8% so chose to go through with it. Are you on FEC drugs? Its the middle E one that causes the hair loss. I opted not to use the cold cap and think I will manage my hair loss quite well now I have my wig and various hats. The second week be careful of infection when your white blood cells are at their lowest.

Wishing you well,

Silver x