Stage 2b EGFR L858R lung adenocarcinoma

Hi JoJO

So very sorry that you have cause to be on here.  The positive is that Hubby is getting the treatment he needs.

No one on here can answer your question as it needs data collection and analysis by experts in this field.  If I were you I would settle for the "one of life's coincidences" approach. 

I wish both your Hubby and neighbour the best possible outcomes.

Kegsy x

So very sorry to hear about your husband's diagnosis and a very similar diagnosis in your neighbour, within weeks of each other.  Cancer is so random.  However, a few years ago I used to see a rheumatologist and when he heard about my diagnosis (Stage 2B adenocarcinoma upper right lung) his first question was, did I live in a Radon area?  I'd never heard of Radon, but it's a radioactive gas that can contribute to an increased risk of lung cancer.  My rheumatologist googled and found a map to show me - I live a couple of hundred metres from a medium risk area.  Meanwhile it sounds like your husband is receiving good treatment, and I wish him well. 

Thank you both. So kind of you to take the time to reply. I can advise that we live in a low radon area but it was a good shout. 
xx

Hi Jojo,

Not an answer to your original question but I am also going to be starting the Carboplatin/ vinorelbine in the next week or two don’t know the quantities as yet only that the vinorelbine will be tablet and I’m just wondering how well did your hubby do on that cocktail, I can’t find as yet many people who has been on those two. Also I am also in the lovely Yorkshire area hope your hubby well and getting plenty of walks etc in the Yorkshire countryside.

Tracey x

Hi Holiday Hopeful, I was on carboplatin (infusion) and vinorelbine (tablet) for my first lot of chemo.  I found it quite tough actually. It made me feel pretty exhausted and sort of shaky inside.  My oncologist said I wouldn't lose my hair on that combination, but in fact I did - it was falling out a lot by the second round.  After the third round my white blood cells tanked and I was hospitalized for neutropenic sepsis so my oncologist suspended the fourth round.  I was prescribed the same combination 18 months later for a recurrence in the mediastinal nodes, a 15% lower dose and this time I kept my hair, but once again I got sepsis after only two rounds and my oncologist said my bone marrow had "remembered" and she stopped the drug.  However, by this time I was also having radiotherapy and I finished that (and it was fine!) and then I had a year's immunotherapy (Durvalumab) - and here I am over 8 years since the original diagnosis with no evidence of recurrence so I'm no longer under the care of the cancer team. I think the best way to approach the carboplatin/vinorelbine treatment is to expect that you will feel very tired, and enlist as much help as you can with cooking, cleaning, laundry, shopping, so that you can just go with the flow and remember that this very strong lot of drugs is zapping the tumour.  On the plus side, I didn't suffer from nausea, and I did learn to tie scarves.  Sending you very best wishes for a great outcome, like I had!! 

First of all thanks for getting back to me Pamela Anne and congratulations on your 8 year been free that’s brilliant news, yes that sounds some scary stuff just as I was expecting but I’m hoping I won’t be on such a high dose as this is said to be mopping up but even if not it is what it is and I have to go with it as I have come this far, I am trying to get my body ready for what it is going to have to deal with in the coming weeks and thankfully I do have my hubby and two sons at home still who will help me. I will be counting down the days from the start.

Tracey x

Holiday Hopeful, Oh, with a husband and sons around you to look after you and look after your home, you will be fine!  And preparing mentally for what to expect is a really good thing to do.   There's no pretending that it will be fun, but adjuvant chemo (if this is what it is) is your belt and braces and well worth doing. What with all the steroids and the anti-sickness medications, the main impact is honestly only the fatigue, and if you have such a good support network in place so that you can get lots of rest when you need it, this is ideal.   Please let us know how you get on and once again, sending best wishes.    

Thank you Pamela Anne, yes I should’ve stated adjuvant therapy, to be honest I end up trying to type like I’m talking in a rush because there’s so much I want to say I end up missing out main things but also I really arnt up on all this cancer as everything has moved so fast I really haven’t had time from diagnosis to Pneumonectomy to therapy all been in a short space of time, I am not moaning at all as I’m glad I haven’t had time to dwell and absolutely everyone has been brilliant and I feel so blumming lucky to have had such fantastic people around me including work and home so hopefully I get this and can start posting very positive threads. 
Tracey x

Hi Tracey

al’s situation was similar to Pamela. He was due to have 4 rounds of carboplatin and vinorelbine. The first round was ‘a breeze’ (his description). But the effects are cumulative so 2nd round not so good and 3rd round quite tough. No nausea but bone weary tired, dizzy, bad tempered etc. his blood results were getting worse and oncologist was worried his liver was struggling too much so they didn’t do the 4th round. As it was adjutant ‘belt and braces’ chemo they were not too worried. He’s now on 3 years of oral Tagrisso (osimertinib) which by all accounts is a medical marvel. The tagrisso is easier then the traditional chemo tho’ he’s still tired, dry skin, eye problems, some food tastes a bit odd. But all these symptoms should settle down. He has a scan soon which will hopefully confirm he is ‘currently cancer free’ which are 3 lovely words to hear. 
It helps to try and include a nap or bit of downtime for the tiredness. I still made him walk the dog daily and he is back to playing golf 2-3 times a week and he only uses a buggy on ‘bad’ days. 
So good luck to you, just go with it as you may cope better than him/Pamela but even 3 rounds is a decent dose of these powerful drugs. 
I wish you well. 
Jo

Tracey, absolutely no problem that you're not familiar with all this cancer jargon.  Nor am I, to be honest, but I've tried to interpret all my scans, and asked a million questions, and you gradually become a bit more familiar with stuff as you go on.  I think, also, that everyone's "journey" (as they say) is unique and some of us will have similar experiences and some of us will find things very different.  What JoJo describes about the carboplatin/vinorelbine effects becoming cumulative with each round for her husband certainly gels with what I found too - the first round was pretty easy, the second was harder and so on.   The other good thing is that you'll have blood tests in between rounds, usually just before your next treatment, so that your chemo team can assess how your liver and blood and all are responding to the drugs, and whether you're strong/healthy enough to have the next lot.  So everyone takes a lot of care and you feel very supported all the way. I was disconcerted to be handed a bag of Filgrastim injections after my first lot of vinorelbine and told to inject myself (to boost my neutrophils) for 5 days after each round.  Luckily I had a husband who was glad to do that for me. He also came with me for the long sessions in the chemo suite which can take 4-5 hours because everything is checked, flushed, administered etc etc and they're busy in there. If he couldn't come, I took a friend. It can be good to take something to entertain yourself (we sometimes played scrabble, or did crosswords).  The steroids they give you to ward off nausea may make you very energetic and talkative and "up" for several days, but then you feel very "down" when they wear off.  There are times too when you shouldn't mix with others in places where you could catch an infection, so you can plan your days accordingly and you'll find that this time goes quicker than you think.  Sending more good luck and strongs!